Archive for the 'endurance' Category

Transitions are hard, but worth it.

Tuesday, November 13th, 2012

I am constantly amazed by how normal our lives are.

What? Stop laughing!

I  concede  that sometimes everything that can go wrong does go wrong. Insurance for one thing has gone wrong lately. We were suppose to be covered, but it had not been activated after my husband’s career change. Then we got the fun of getting denied for a trip to the casting clinic, a trip to the pediatrician, a trip to the ER, a trip to the pharmacy, a wheelchair order that had been in the works for over a month (which is now semi-permanently  stalled), Roland’s walker (we now have to borrow one instead), and a trip to the orthotist for the lift in Laelia’s shoe that allows her to walk. All in the same week. I admit. Those times suck the life out of us. But I think every family has *something* that sucks the life out of them if they let it.

But day to day my kids are active, happy and sweet. Normal. They will squabble like siblings–”don’t touch my crutches! I want that! Noooooo!”–but they also love each other. Last night Laelia was falling asleep before I got her in bed. Roland crawled up to her while I was removing her KAFOs and very gently reached down and gave her a kiss on the cheek. He said “ah uv oo,” which is what he says after he hears, “I love you.” Precious!!! Right after that he grinned and went to pick her nose, but I grabbed him in time. Stinker. ;)

Often if Roland is having a hard time sleeping in his crib Laelia will walk up to the bars and stick her face between them to make faces at him. I hear him giggling and I pretend I don’t know anyone’s up. ;)  Laelia has also taken it upon herself to be Roland’s personal English tutor. So far she has taught him “up,” “good boy,” “good girl,” “thank you” and “you’re welcome.” She encourages him a lot while he parrots the noises back to her. I love seeing him grin when she praises him.

So I guess I want to say that life is good and we are happy.

It’s been three months since Roland has been home. The transition has not always been easy, as adding a child to a family is often a difficult transition no matter who you are. There was a time when I was so worried about Roland’s transition from orphan to son, especially when I would see behaviors that made no sense to me. One of the first weeks he was home Laelia won an award at school for citizenship. (Oh I shutter to remember this story.) I had to go to the school to see her accept it in the morning. I had to bring Roland. The little guy had a hard time in an environment of children. I’m sure his institutional spidey senses were going crazy. I don’t know what orphanage connections he was making, but I do know he threw the biggest screaming fit through the first two children receiving their awards. He was bright red and screamed so much that he threw up a bit on his shirt. I had to leave the room as the other parents had brought video cameras and I was ruining their moment. Laelia was the third and final child and the teacher came to get us from outside and told me that we could just let Roland scream and she would talk loudly, but it was important I be there. Laelia had just been through a lot of transitions herself and was not reacting well to Roland’s screeches. She refused to go to the circle. (Did I mention she was getting this award for following the rules?) She simply said no and then planted her stubborn little feet. With Roland arching his back and swinging his arms and legs wildly I knelt down by my daughter and in my sternest voice told Laelia she would go to the circle (then lowering my voice to a dangerous level added) right. this. minute. She complied. Roland swung an arm around and clocked me in the face, my glasses went flying. Thankfully at this point he was only in two casts and not all four, so his arms were not the plaster punchers they are now. I had to hold his arms down which caused him to scream like someone was killing him. My ears were ringing. I didn’t know this little one well enough to know what soothed him yet and nothing was working. I got lots of nasty looks from other parents which was the real kicker. I realized that it looked like I had broken my son’s legs (which I got accused of by strangers that week) and now he was throwing a fit because I was a mean mommy. No one would believe the unlikely story that he had a joint condition and had *just* been adopted. I was dying for this dumb award to just be thrown at my child so I could retreat. A parent was still filming (why? shoo!) and Laelia got her award. But she had an attitude and pretended not to hear the adults. So I took her award and told her she could have it back when she’d earned it. One parent blocked my escape and asked if her son and my daughter could take a picture with their awards. Uggggggh. My son was now upside-down in my arms from squirming around and I had my neck craned back to avoid his kicking feet. “Quickly,” I snapped and then waited an eternity for them to finish while my daughter refused to smile. I was red in the face when I finally marched out of that classroom, crumbled award in one hand, screaming boy in the other. But a few steps outside was enough to get Roland to calm down and cling to me. I was so unhappy with him I didn’t even speak when he asked, “Dadoo?” (His way of saying, “Mommy?”) A guy walked past us and stared. I just thought,  What?! Ever see a tantrum before!   Then another dad walked by near the school gate and looked straight at his shoes. What?! Am I embarrassing you?!!  Then, I swear, a THIRD guy walked by and this one grinned and chuckled at us. What?! Okay that was a weird reaction. Roland is not even throwing the fit anymore, I mean he’s just sitting in my arms grabbing my shirt…. *gasp*

Yep my son had grabbed the front of my shirt and dragged it down to expose my entire (colorful) bra. I had just flashed every man I had walked past. When I realized this and grabbed my shirt up, Roland began to laugh. Yes laugh. He is lucky he’s cute.

See this memory was floating through my head last Thursday during my parent teacher meeting. Laelia and Roland played happily while the teacher went on and on about how wonderful Laelia was and how good she was doing. Roland didn’t scream once and when his toy would fall out of his hands he would say, “Uh oh,” to his sister who happily got it for him and lectured him to thank her each time. (“Day do!”) Roland seemed so happy and adjusted compared to our first classroom appearance. Now he was with his family and content. Instead of a stranger, I was a comfort to him. And my shirt stayed up to my chin the whole time. :)

I found out last week that my sister and her husband have decided to adopt from the Republic of the Congo. Their son will be an abandoned (most likely starved) little guy. She was on the other end of the phone while I cried that my son wouldn’t stop crying when he got home. She was there when I told her that I had to go out one morning to a doctor’s appointment and my son was now stimming like crazy and wouldn’t make eye contact. And if I was going to scare her away with how hard a transition can be, then maybe getting my son in four casts (plaster punchers) may have done it. :)

But transition is an easy price to pay for a little human person being added to the family. And realistically our eight week transition was not that long. Right now both my kids are enjoying Thanksgiving break and playing together. Roland can pick up his own toys after they are done. They both cleaned their room the other day by themselves! Laelia has been doing more physical feats with Roland around to encourage her (read: chase her around). I’ve seen Laelia “fast walk” (run) without crutches to avoid a rolling Roland bulldozer. Roland has done more physically too, but it’s not like he had much of a chance in an orphanage to begin with. It’s fun to see your son become a well-adjusted typical two year old in the space of a few months. It’s fun because you know it wouldn’t happen if you hadn’t adopted them, so it gives you this proud feeling of accomplishment even though you just provided the environment and your kid did all the work. :)

I can’t describe how happy I am that we adopted. (I literally can’t get computer time enough to talk about all our joy.) I can’t tell you how happy I am that my kids get a cousin from the Congo. Life is full. It is good. Adoption is worth it. Transition is worth it.

 

First month home!

Tuesday, September 25th, 2012

This is that first month home  blog post I promised. It’s over a week late. Sue me I’m busy. :)

Let’s get to it! Here’s everything: the good, the bad, and the ugly.

Roland the Adjusted

Roland has been adjusting nicely. There’s no official measure of this of course, but if there were, he’d be rocking it. There’s also no official timeline of this, but if there were he’d be on the faster end of things I think. (I’ve learned that kids with physical limitations bond faster because they have to rely on their caregiver. That is definitely true in our case.) The classes we took during our home study process (the first step in adoption) are finally coming in handy. We also have a support group online. Those two things have put a lot of light on Roland’s behaviors. Understanding him has helped us parent him. For one thing diaper changes were somehow traumatic. Before my mind went to dark places, I got the advice that he probably just doesn’t like the vunerable position he’s in since we were placing him on his back. We made diaper changes more fun, added toys and eventually he felt safe in that  vulnerable  position. Now it’s fine. He occasionally throws a stink (pun totally intended) if we change him, but only because he’d rather be playing, not because he’s scared.

Food was another part of adjustment. If he saw food anywhere around the house that was not in his mouth right that very second it would cause a melt down. Not getting it into his mouth fast enough while he was at the table also caused a melt down. If it was food he hated BUT it was taunting him with the mere fact that it could never be touched by mortal taste buds… melt down. He was always afraid of not getting fed or not getting enough. We had to have Laelia eat her food in another room so he wouldn’t freak out and try to grab it out of her mouth anymore.  (He once threw himself on her red tray table to get to her food. He did it so hard that it collapsed the whole thing. Food flew everywhere and he just put his little body on top of the food to guard it because he had no way of getting it into his mouth with his unbending arms. Then he made loud Ukrainian noises at us when we tried to remove him from the pile of food. It was totally like this.) Things are much better now. I can make a cup of tea while in the middle of feeding him breakfast and he waits for me. I just ate something in front of him without thinking and he happily played with toys because he had just eaten. Obviously he trusts us to feed him consistently now.

He can also now eat our foods with their different smells and textures and that helps. Cheerios and graham crackers were yucky to him several weeks ago and now they are ambrosia. He came to us not being able to chew and that caused any chew-required foods to be avoided. Now he chews and swallows and even drinks from a straw! We’re so proud of him!

Of course on Saturday someone handed him some fruit snacks and he swallowed them whole. When we made chewing motions and pointed to his teeth he enthusiastically made those chewing faces right back to us and then swallowed another fruit snack whole. *sigh* It’s progress. ;)

As far as other adjustments…

It didn’t take long for Roland to realize that Daddy comes home around the same time everyday and it’s fun to block the door.

Or that if he grabs Mommy’s hand and puts it on his little head that Mommy (aka the sucker-for-baby parent) will coo over him and love him all over.

Or that everyone wants to take his picture.

And every picture looks like this, “Oh boy a camera! Must point at it!”

And if we ever see mommy go into the big box in the bathroom it means she’s being eaten by a giant monster and we must bang on the glass door and scream the ENTIRE time to keep the monster away.

As soon as mommy turns the water off we get super excited and tell her all about how we helped.

(I used to leave the shower door open enough for him to stick his head and one arm inside and happily play in the water. Not since getting his can’t-get-wet casts though.)

Let’s see, what else?

Roland has two stimming behaviors that have followed us through this first month. To stim is to self stimulate. You see this in kids with autism or kids who were institutionalized. It’s a way of creating stimulus  when there is none, but this coping mechanism sometimes becomes ingrained and follows children home from institutions. Usually stimming includes rocking or moaning or rubbing or licking and it is always repetitive. Roland used to rub his eyes over and over, but that is largely gone except for when he’s really tired. Only two behaviors have really lasted the month. The first is a movement he makes with his head. He shakes his head “no” in a slow motion moving all the way to the left and then all the way back to the right. This is his way of avoiding eye contact. He will do this if he’s overwhelmed. And once his head is all the way to one side he’ll look at you by straining his eyes and using his peripheral  vision. It removes him a step away from full-on eye contact. I don’t have a video of this as it happens so rarely now, but the day (a week and a half ago) he had to go with Daddy to get x-rays (I was throwing up at the time and couldn’t go) he did it to me when he got back. It was like he was saying, “Mommy wasn’t there. I feel abandoned. I have to regress to this behavior to look at her.” But really I don’t see this lasting the second month.

The other stimming thing he still does is a humming noise he makes. We call it his “thinking noise.” This, I’m pretty sure, will last SEVERAL months/years. It happens when he’s bored or working out something in his head. He used to do it 100% of the time whenever we handed him a book. We used to joke, “What bad things did the books do you to baby?” Here’s a video of him making his noise. It doesn’t mean he’s unhappy and never turns into crying.

One adjustment Roland has made is to bond with a primary caregiver. In this case that’s me! (Bonded for life! Woohoo! Watch our future Mrs. Rolly! I’m gonna be *that* mother-in-law. :)) Bonding is super important and helps when visitors are introduced into our lives. He needs to know that these are friends, but they won’t take him away to live with them. They go home and we stay here. We have been working on this so that he’ll be ready to have his grandparents come visit. We’re making progress. As you can see last week we went to Philly and he played with other children. He even got held by others, but  preferred  me. It was awesome. And a good sign. But before that we had a play date and he had a great time, but as soon as they left he was a mess.

This was his first ever play date. He had a lot of fun.

Click here for a video of his dance party.

That night he was up from 11:00pm to 7:00am crying and getting reassured. It didn’t make sense to me, but when I got on the support group and said, “My son is pulling an all-nighter!” Someone wrote, “Did he gave a great day or a birthday party?” Really?!!! Yeah he had his first play date. Poor thing is either  sabotaging  himself or wondering if the fun people will be his new parents. Grrrr orphanages suck!!!

Adjustment is hard, but it’s going really really well!  We have a little ways left to go, but not a long way. Mostly we have been blessed with a well-adjusting, happy kid. A kid so happy he wakes up with smiles in the morning and even when he’s throwing a tantrum over a toy he’s not getting (scissors, sharpie markers, etc.) he is always brought out of it by being picked up and loved a bit. Very spoiled child over here.

Roland the Trouble Maker (abridged… very abridged… very very very abridged)

Roland has an engineer’s brain. It’s kinda awesome to watch him work things out in his head, kind of like our friend Abu does. So I’m resigned to the fact that Rolly will be taking our thermostat apart or “fixing” the microwave some day. In the mean time his engineering mind mostly causes messes or trouble. Like the time he got my cell phone out to play with. I had locked the keypad so I let him play with it. He not only unlocked it, but texted “I’m in a meeting” to my husband using the saved text thingy already in the phone. That led to some funny back and forth between me and my husband when he called to ask if my meeting was over because he had been sitting on some important information about Laelia’s school. I was mad because I’d been waiting for that info all morning and could not figure out what he meant. Roland also set an alarm clock to go off at noon everyday on my phone. *sigh*

What other things has he done recently? Oh my word you would not believe me.

He turned on my work printer, pressed “print” which printed out my time card, then danced to the “music” while it printed, then repeated that 14 times before I realized what he was doing.

After two weeks home I just resigned myself to wasting one bag of Cheerios and one cup of water per day. He just loved to open the bag (hard to do since he can’t supinate well), get the lid off the cup and just start dumping it all over himself.

My son loves to pull the siding off the walls. It exposed the nails so we put some duct tape there so he couldn’t do it. Why Mommy why?! That was like my favorite thing to destroy!

Five minutes alone in a room. Enough said. (Those red things used to be the sides of a box of toys.)

Look at those two stinkers! After I took this the phone rang. When I came back a minute later they had flooded the bathroom. No joke. Roland had also put the toddler toilet seat in the bathtub and the plunger in the toilet.

One day I had put over an hour of work into a project for my job. Roland happily entered the room, saw a button (ooooh button) and turned off my computer. All work was lost. When I said “nyet!” he ignored me and happily turned off my husband’s computer too. Now we have a baby gate thanks to Craigslist. He just stares at the buttons with longing in his eyes on the other side of the gate. Must. Press. Buttons!!!

He chases and actually catches the kitties who then become his little furry pillows. (Video here.)

Here’s him dumping all the shampoo into the bath water along with anything else he can reach. Baths and destruction are like his right and left arms.

Even at the famous train table at Shriners he’s the one destroying the track.

Oh I could go on and on and on. There’s the time he pulled the window slates off, then he unplugged the Internet router, then there’s the fact that he’s always pulling all the books out of the bookcase, and all the DVDs out of the cabinets, and soup cans out of the pantry which I find in the garage because he gets them through the kitty door. We now have to put the cats’ food and water dishes up high after Rolly had a little party with them one day and move all plugs behind the couches. He has pulled two pictures off the walls, set off my car alarm using my keys, got all the pots and pans out, stole and lost the clean and dirty magnets that go on the dishwasher, found my box of letters from when my husband and I were dating and tore them up, oh and he got into the bathroom.

Steve came over and had to baby proof our cabinets after this.

I swear I have too many stories of this trouble maker happily making trouble!

Usually they end with him falling sound asleep in the middle of his destruction.

Moving on…

Roland the Skilled

Holding his own cup!

Playing the piano. (Video here.)

After a month of daily stretches we finally got enough bend in his elbow to hold his food!

Side view of his new bendy arm!

And that’s just holding the food. He also fed himself a graham cracker for the very first time! Click here for that video.

Roland loves the wheelchair. Click here for a video of him using it!

And I know I’ve already shared it, but the video of him knee walking with a walker is just so great. Click here to see it. (I also love his happy noises in this video.)

Roland the Patient

Pretty much Roland’s medical treatments are very easy. They would have been bad if we hadn’t already been through the entire thing already (only harder) with Laelia. Pretty much when the doctor is breaking news to me like, “Well…….. it looks like he may need surgery on his hips.” I’m all like, “Oh a release? For the hips? Yeah we don’t call that ‘surgery’ in my family. We call that ‘day at the hospital followed by ice cream.’ Unless you’re talking about cutting my child’s legs off and then screwing them back into a different position then just call it an ‘outpatient procedure.’” :)

But seriously, his AMC is more mild than Laelia’s and while still requiring hard medical intervention, it just feels like we’re on a vacation.

You know what? The best part?! There’s no “mommy guilt!” You know, like the kind I felt after my daughter was born thinking I had caused her condition. It didn’t matter that amyoplasia has no known cause, is not genetic and they’ve ruled out accidents and diet for possible causes. It didn’t matter because she grew inside me and my womb crushed her. That’s hard to forgive myself for. With Roland I have only ever had the good feelings like I’m doing good in the world by helping my son thrive. That has made things easier. Much easier. Most of us special needs bio moms gave birth and were dealt a blow and grieved a diagnosis. But with my son it was so different. Choosing this path has been empowering in a way. It’s hard to  describe, but add it to the amazing realization that I did not have to go through pregnancy or labor or breastfeeding again and just call me insanely happy.

(Well, some people may enjoy those things. For me it was “get it out,” “cut it out” and “pump it out.” Did I like that? Figure it out.)

Of course there are set backs when you don’t have a baby from birth. I can’t tell you how many medical  questionnaires  I’ve filled out with question marks or “who knows!” next to the question. Was he premature? Was he breach? Was he small at birth? When did he cut teeth? When did you first notice____?

The other down side of not having him since birth is that he has missed some windows for things. For one thing he doesn’t qualify for a cranial band (those helmets) because he’s too old and his head has firmed up. He’ll just have that flat spot on that back left for life, and it may or may not cause headaches or jaw issues later and may require surgery.

He also has some lead in his blood from living in the orphanage in a third world country. Actually there are a lot of little things when you bring home a little one and a lot of initial doctors appointments where you wonder what will be discovered and where that discovery will take you.  And they always want a sample or three of your child’s poop. Welcome to tiny shovels and vials. Welcome to blood work. Welcome to range of motion measurements.  And welcome to shots since you have to retake some important  vaccinations  because they are notorious for being junk or expiring in his birth country.

As far as orthopedic treatment right now we’re doing serial casting. Roland got casted recently (as you can read in the previous post) and hated life for about a day. But after almost two days he’s back to the old happy Rolly. Oh look there he is tearing up my carpet. :-/

Here’s a video of Rolly re-learning to crawl with large plaster casts on. Next week we’re adding at least one arm cast to the mix too. Poor dude.

Roland the Little Brother

Riding on the wheelchair with Big Sissy

Cuddling on the couch. He won’t let her hold him like a baby and she is resisting the urge right now.

I have to say I’m impressed with my daughter. She was an only child, a spoiled child, but she took on the big sister role even before he came home. She prayed for the orphans in Ukraine and Russia and Bulgaria every night. She mentioned things she was going to help her brother learn or do when he got home. After her last surgery she woke up and the first thing she said was, “When baby brother has surgery, I’m going to hold his hand.”

Laelia calls Roland “baby brother.” We’ve all started doing it. They fight like siblings and cannot share a toy without someone screaming (Roland). But it’s so very normal. Laelia loves to dominate and mother Roland. Roland had to learn to have a sister who is bigger than him and wants to pat his head and hold his hand. At first a larger child wanting to touch him just scared him to death. In his orphanage he only ever played with a small “groupa” of children his age. He never experienced love, or watched someone else be loved. Watching Laelia fall down and get comforted led to him crying out to be comforted. (Which was a break through at the time.) Watching Laelia say words to him, led to him making similar sounds.

I’m starting to think that larger families are just so perfect for these adopted kids. I wish we had more siblings to give him.

My favorite part of parenting is watching my children grow and mature. Roland went from an orphan to a member of a family. And Laelia went from only thinking of herself to thinking of her brother. I love to hear my precious daughter’s voice on the baby monitor in the middle of the night singing to her brother who woke up crying. Or even her world-weary voice saying, “You’re okay baby brother. That’s enough. Go back to sleep.” Haha!

But of course my daughter will also pick on her brother. She likes to set all his toys to Spanish and then laugh and laugh while saying, “Bwahahaha!!! Now you’ll never learn English! Hahahahaha!!” (It’s kinda hilarious.)

Roland the Talker

Roland says kitty and Laelia. That is all. :) “Why you no speak English?!”

Oh and “da” which means “yes” in Russian.

Okay well he’s also just started to parrot some sounds back. When I say, “up” he sometimes says, “ahhhb.” Or at the post office today I said “people” and he said “peeool.” Last night I was tickling him and said, “You want more?” And at the word “more” he opened his mouth wide for food. (“More” is a word we often use at the table.) So he’s getting it.

He only says “mama” when fussing or crying. For example when I’m in the shower, “MA MA MA MA MA MA MA MA MA!!!!!!!!!!”

Mostly, and I mean almost always, communication is simply raised eyebrows, a pointing finger and the sound, “Mmm.”

(Update: Week five and he now says “no.” Often.)

Roland the… Roland

Pretty much the weirdest thing about bringing Roland home was that he was not the baby I had prepared for. I think during the waiting period you fall in love with a picture and then you fall in love with an idea of a child who is not real. That’s not necessarily a bad thing, in fact I held onto that one picture like a  talisman  through the pain and travel and paperwork. When the real boy entered the scene he was wonderfully better in some ways, and woefully hard in other ways. But he was real. We were expecting a baby who didn’t move. We got a tiny tornado. We were expecting crying and we got total happiness  punctuated  with bouts of screaming. We were expecting gratitude and we got honesty. Oh and we expected him to chew. And we got schooled in the heimlich.

He has a personality. Part of it was shaped by having to look out for himself–hitting and screaming and fighting for what’s his. Part of it was shaped by being always around other small children so he is loud and screams for attention. Part of it is due to his arthrogryposis limiting his mobility. Part of it is foreign, from a culture I don’t fully understand. And part of it is biological from a gene pool I don’t share.

But largely, little by little, day by day, a major part of his personality is being shaped by me. It’s incredible to watch. He gives kisses like I do. He gets excited and shakes a bit like I do. He makes faces like I do. When I’m telling him, “Can you say BA NA NA?” He says back to me, “Da na da, DO DO DO?” in (I swear) my tone of voice. We even joked he was teaching us his language, the language of do do. :) Okay none of those things are relaying my point, but just trust me, this boy is assimilating into a family for the first time ever. It’s amazing to witness.

Hardest: The easiest parts were kind of covered already in the adjustment section so I’ll tackle the hardest. I think the hardest part of adoption so far has been during the first several weeks anytime Roland threw an angry fit. The first three days were different. Then we were in the fire and we knew it, and it was so bad that we couldn’t  concentrate on ourselves at all. I think caring for extreme needs like that was easier on us, maybe because our brains shut down and our instincts took over.  Then there was the get-to-kn0w-you period of time after the initial shocks were over that I didn’t expect for whatever reason. He would cry and we would play the figure-out-why game. Now after a month I know why he’s crying 95% of the time. That has helped.

But I’m talking about the angry, I-want-my-way, typical toddler fits. (Typical fits, but unusual triggers.) I didn’t expect to be so insanely angry when he’d scream, and I didn’t expect to remain bitter towards him even after he was happy again. I didn’t expect to feel violent thoughts when I’d had enough. There have been two days in a row, and then another day a little later, where I simply faked being a loving mother. I did all the steps without any of the feelings behind them. And I know my husband had more days like that than I did. It surprised me that this anger would be a side effect of bonding, of things getting better. It humbled me. I felt like a terrible person. When Laelia was this age and did the exact same thing I would get angry, but when she was good or cute again the anger would vanish. Yes she threw this or hit that or screamed, but, you know, she has her daddy’s eyes and my stubborn chin. How can you stay mad at that? But with Roland, this adorable little stranger who was hurting my ear drums and causing my heart to race, there was a bitterness that lingered. It required a lot more monitoring of my own reactions and thoughts. When he would be over his fit and happy again I would see it as manipulative and just want to leave the room (which I couldn’t). Thankfully these situations didn’t happen very often and everything seemed to reset in the morning. The Bible says God’s mercies are new every morning. It’s true. It’s a natural reboot. Roland wakes up with a smile on his face and he  beams  with joy when I make eye contact with him for the first time. And I fall for this baby all over again.

Hmmm, another hard thing is that there is a constant-ness to parenting an adopted child. It’s been five weeks. Whatever heartwarming story or fiery speech that geared me up to tackle bonding has well worn off by now. Now it’s just the constant being with him. The constant co-sleeping. The constant not being left alone. The constant carrying around the house or wearing him. The constant bother of being someone’s emotional well-being. It’s worth it, most definitely, but hard. Not enough to make me want to claw my way out of my house and run down the street screaming, but let’s just say that when Roland is sleeping soundly enough for me to escape, I do. And often.

And during those times can I get someone to please remind me that I should really be showering, doing dishes, brushing my teeth and folding laundry? Because I don’t know how this happens but I always end up either playing Plants vs. Zombies or watching reruns of Xena Warrior Princess on NetFlix. ;)

Most satisfying: I love being covered in children. (I can’t tell you how large my heart got in my chest just thinking about this.)  I love saying, “My kids.” It was so surreal the first time I said, “kids.” I love the plural. I love kissing two little heads in my lap. I love cuddles. I love love love my kids.

I was told that the first three months are a time of constant holding, never leaving him alone and sleeping together. And that’s what I’ve done. But tonight he was doing so well that his daddy took him to run some errands and I took Laelia to Home Depot to get her a cactus and let her run around in the plant area. It was the first outing with just us girls since Roland’s been home. We loved it so much. Laelia talked the ENTIRE time. But what amazed me was how much I missed little Mr. Clingypants. When we walked in the house after less than an hour away, Roland saw me and started laughing and grinning and holding his little arms out while half crawling/half stumbling his way towards me. I ran to him and scooped him up in my arms where he squealed in delight! I love him so much! This boy is pure joy!!!

First trip to Philly with Rolly

Sunday, September 23rd, 2012

I haven’t had a ton of time to blog, but thankfully my friend Julia already did for me. Click here to read her blog and see pictures of all our kiddos.  We hadn’t seen Julia in person since Aaron’s first trip to Philly right before he got his first casts. Now Roland was getting his first casts and we run into them again. Every time either of us adopts a child who needs serial casting we’re sure to run into each other. ;) Julia and Rob and their boys are part of our AMC family. And Aaron and Laelia were flirting something obvious.

Aaron: “Laelia wants her water, but I have to get it.”

Laelia: “Push me on the swing!”

Aaron: “Gotta go.”

(Video here.)

At one point she spilled her water and Aaron ran to get the towel. Amy was already carrying it over but Aaron convinced her to give it to him. He triumphantly brought it to me to clean up the water. :) He even helped Laelia stand up using the step in the living room. He got down and showed her over and over how to do it and then cheered her on. I think Aaron enjoyed being the more mobile one for once and Laelia enjoyed being the center of attention (For once? Ha!) so their relationship works well. ;)

We were invited over for dinner at Amy and Adam’s house. (Here’s Amy’s blog.) Amy and I have been chatting lately since we learned we have both adopted out of the same orphanage. I was so glad for the Facebook correspondence, but it was even better to sit down with her at her kitchen table for some one on one. All I can say is that if you’re feeling something about adoption you can bet another mom is too. And it doesn’t take super human beings to adopt, just us.

We also got to meet Susanna and several of her children. (Here’s Susanna’s blog.) They are the family that adopted little Katie, who at ten years old was only ten pounds when they adopted her.  My husband and Susanna’s son, Daniel, had a long conversation about math. I think my husband would be up for adopting again if we could adopt Daniel. :)  I’d have to put my foot down since theoretical math conversations all day long would not be good for my brain. ;)

Roland and Katie

Ball fun!

AMC reunion

Backing up a bit. So I had to work late into the night before our trip since it was my last day of work and there was a lot to do. I packed our bags two hours before we flew out. Oh and of course my dumb cat with the feeding tube decided to claw the tube out of his neck the day before. He was going to spend the next few days at the vet while we were gone. And now he has a big hole in his neck. That cat… Just what we needed. More stress.

Dumbest cat alive won’t feed itself.

Roland did better on these flights than the long flights home from Ukraine. It is amazing what a month of love and bonding can do. He was still cranky and tired, but clung to mommy instead of wiggling out of my arms and throwing huge fits on the floor of the aircraft. Our first flight was uneventful, but the next flight was majorly delayed. An air conditioning unit had blown a hole in the side of our plane and finding us a new plane took several hours. And  Roland had a major melt down during what turned into a five hour layover. He cleared two rows of seats in the waiting area. Seriously. Some people just quietly got up and found other seats. Others grumbled under their breath. My boy has lungs! (I need to take him to the DMV so he can clear the line for me.) At one point all he wanted to do was run (crawl) away and go get into other people’s bags. I made a make-shift leash and attached it to his shirt. He thought it was great until he realized he could no longer reach the other people in the waiting area and smack them. (Hitting is his new way of saying, “Hi! My name’s Roland!”) This led to melt down city, with the added effect of looking like he was freaking out over being chained up. Thankfully another passenger brought his one year old over to play. (Parents get it.) Actually it was really good for me to see that this one year old acted a LOT like my son. I realized that even though Roland turns two in 21 days he has a mental delay and I need to treat him like he’s still a baby. Watching the other little boy smack the stuffing out of our toys put Roland’s hitting in perspective and caused me great relief. I’m sorry but I have only ever parented one mild, gentle creature before; I know nothing about this boy business. My default is to over-react every time with, “Oh no, you think this is orphanage behavior? Is he violent? Will he need therapy?!!!”

We have since made high-fives okay and if he hits we say, “Oh not there, here!” and put out an open hand. He happily smacks away.

Okay so back to the miserable trip. We arrived at our hotel around 4:30am and still had to eat dinner. McDonalds is open 24 hours, but it turns out that neither of my smart children will touch McDonalds so we made the oatmeal I brought. At some point I realize it’s past 5:00am and we need sleep.

The next thing we know we wake up and it’s noon and we realize we have not checked out of our hotel room! So we call the front desk and the lady says, “Oh no, you checked in this morning, you have until tomorrow to check out at noon.” Yay! That’s like two nights for the price of one! It turns out she was new (and wrong), but they honored what she told us and gave us the next night for free. (Even though the next morning two room service people were startled to see us and tried to kick us out.)

So we didn’t check out (yay!) and instead went over to DuPont hospital in Delaware to meet Dr. Rahman and the WREX team. They watched Laelia play, took some little measurements of her arms and then strapped her up to a WREX. They are making one for her that will be ready in a few months. Laelia is excited!

Click here for the video.

I was impressed at how knowledgeable they were, and how willing to help Laelia they were. Her triceps are tight (she does everything with them) and they were adjusting the WREX to help loosen them up. I felt like I was on Team Laelia and we were working together for her. (I wish IEPs still felt like this.) I went into the appointment feeling like I needed to show we qualified for this, but they were just happy to help her. One of the guys held her upper arm firmly and asked her to bend her elbow. I was just about to explain that she didn’t have any biceps (required to do that) when she moved that little elbow a slight bit. Turns out she has a different tiny muscle (he explained which one) that did that for her and he noticed it right away. Wow. I’m used to knowing more about my kids than the doctors. Not this time.

The next morning (okay afternoon, but our schedules are totally wacky at this point) we headed over to Philadelphia Shriners. Laelia and Roland were really good for their appointments. Roland did not like to be measured with the “go-knee-o-meter”, but he calmed down right away. Laelia loves Dr. van Bosse and was ready to show off her walking skills. (Of course he was ready to sing her praises to all the other doctors.) She gave him a little bear we had picked up for his little son. It came all the way from Ukraine.

Laelia was also happy to avoid casting. She’s walking so well that they want to let her be mobile, continue to let the plates in her knees do their job and we’ll adjust the braces to  accommodate  her re-clubbing foot. So an easy appointment for my little girl. Turns out that when standing her knees are 15 degrees from straight instead of the 5 degrees when she’s sitting. To fix this they add a strap to her KAFOs. They didn’t have time to fix them while we were there so they’re mailing them to us on Tuesday. (It’s a long wait for this mobile little girl!)

She also got her x-rays like a pro. She told the technicians all about how she used to cry (very true) and how her mom used to cry (not true) and how everyone was sad (just her), but now she’s in kindergarten so she’s practically an adult and can handle silly x-rays. :)

While waiting for Laelia’s wheelchair to be fixed (they fixed it despite the fact that it’s not from them) we ran into the arm doctor: Dr. Z. (The Z stands for Zlotolow… but I know him by “Dr. Z.”) Dr. Z recommended we cast Roland’s elbows and do them one at a time so he’ll only be in three casts instead of four at a time. If he were a lot less mobile it wouldn’t matter, but to bind all his limbs would be mean to this active guy. We’ll begin casting the elbow in a week and a half here in San Diego. But the funny part was when Dr. Z walked in the room and my husband whispered to me, “Mark Ruffalo.” Totally! Am I right?

Also while we were in PT we let Roland run loose with a walker. He was knee walking for the first time ever and he loved it! Click here for the video.

Roland had had x-rays done before we came to minimize the poking and  prodding. We found out he needs his clubfeet casted (duh), possibly two tendonotomies  on them (two?!), his hips need a surgery (but NOT the awful osteotomies that Laelia had, just a release) and when he’s four he’ll get his knee surgeries. We’ll either get him in fixators (one at a time) or do releases and 8 plates like Laelia had done. It totally depends on the contracture severity. (Please please please no fixators.) First things first is clubfoot casting. That’s the Ponseti method for you AMC pros.  Roland was pretty good for the right leg and mesmerized by the wrapping. Then the left leg he started to panic since that one was getting a good stretch.

Then he cried for the next couple hours straight.

We had planned to visit the other few AMC families while we were there, but Roland was really not doing well. So since he is so new to our family and to medical treatment I felt I had to go someplace safe and just hold him. There was “no room at the inn” so to speak as our sweet deal with the hotel had run out and the Philly Ronald McDonald houses were full. So we drove back to Delaware to stay at that Ronald McDonald house there. (About an hour’s drive.) It was really nice.

Roland screamed all night long. No one slept.

He would jerk and then scream. Since we were all sleep-deprived zombies we didn’t really notice (care?) that the jerk always came first followed by the screaming. Lucky me got stuck with him in my bed so every time he screamed I would rub his back and comfort him. It wasn’t until we were on the plane and he was still doing the jerking thing that I started to worry. He would be sound asleep and then jerk or spasm (or convulse? or seize?) and then cry until I comforted him. Then go right back to sleep. Repeat and repeat. Now it’s scary because he was diagnosed (we had believed incorrectly) with convulsive disorder while in the orphanage. They also gave him something to get him to sleep in the orphanage, and for the first time we had given him something to help him sleep (and reduce pain)! Could it be? Is there a drug connection here? We discontinued the Tylenol with Codine immediately just in case. To my surprise the screaming stopped and the jerking stopped. Oh my goodness, was it the pain meds? Or just the shock of his first casts? Or did I happen to stop meds at the same time he happened to get over it? Was it really convulsing??? I have no idea, but not being able to give him pain meds is a bit of a scary thought as he has surgeries in his future.

I took this video on the plane. At the 52 second mark his body jolts and that was not me or the plane  turbulence doing it. He jolts. Wakes up. Cries. Then goes back to sleep. Anyone have any idea what that was? It happened a LOT. Just like that. Seizures?

When we finally got home it was near midnight. While on our lay over the vet had called and told us that we needed to put a feeding tube back into our cat since force-feeding was not getting him enough calories to survive. That surgery would cost $900. There’s no way we could afford that (as we’ve already sunk money into this cat already and now I have no job) so we called back and tearfully said, “Just make him comfortable. We can pick him up on Sunday.”

Since then we’ve gotten the cat to eat a little and been able to keep his medicines down him. We’re not telling the kids how bad he is just yet.

I have never been so happy to see my own bed. We put a sleeping Laelia in her bed and a sleepy Roland in his crib. I just slithered into bed like a snake and Charley even rubbed my back for a while. It was heaven, until Roland started to cry and Charley’s place in bed got  usurped  by someone younger and cuter. What can I say. ;) *sigh* I was passed exhausted, but thankfully he was doing better even without the pain meds. Charley got a full night’s sleep in the next room and was able to take over a lot of the parenting the next day because of that. So I’m happily blogging while Charley does all the heavy lifting.  Life is good! :)

The hard times and the good

Tuesday, September 18th, 2012

Peek-a-boo!

Today was the day I was going to write about my son’s one month home. He’s been with us one month. I have so many pictures of this trouble-maker, you have no idea. And videos. And accomplishments. And joy. And love. And a high number of just his finger. (Stop pointing at the camera, my love, and keep doing the cute thing you were doing. I give up. Cameras are too cool and must be pointed at.)

But life is happening and it’s too much to find the time to write. I will share–believe me these picture demand to be shared–but not until next week. I hope next week. After we’re back home from medical travels. (Oh I’m not looking forward to having Mr.  Trauma  back on a plane. God help us.)

You see today is hard. Today my husband is sick. Today we missed the school bus. Today Roland has an appointment to get casts and we’re going to the appointment but refusing the casts… again… because our son is not ready. Tomorrow we fly to Philadelphia and Delaware for medical treatment for both kids. We arrive so late that we can’t get into the three Ronald McDonald Houses and must get a hotel. Today I called the rental car company and found out our reservation wasn’t put in. Today I feel defeated, busy and stressed.

But where my focus really is, even if it shouldn’t be, is that today is the last day of work for me. I had to leave my career. It was work-from-home, but my position required coming into the office for some much-needed meetings, and I just can’t. I don’t know when I could as my little one learns he is safe and that we won’t leave him. My family demands so much right now. I was pulling all-nighters to get my work done. Leaving my job to care for my family has made me feel like the biggest quitter ever. Six years I put into my company. Six years. I won’t even have more free time if I do this, just a couple more hours sleep a night… when Roland lets me. Oh and I’m good at what I do. I get a sense of self from what I do. A sense of pride. And we rely on my income. I don’t know what we’re going to do, although I know we have a few months to figure it out. Today is hard. Not just because I have a ton of work to do for my company before I leave everything in other’s hands, but because this was my life. The life I liked.

“If this life I lose I will follow you.”

This life is a blip. A blip. One tiny speck on our timeline of eternity. In that perspective it’s easy to lose this life to gain so much more. Is my son worth it? Damn right he is. Damn right.

(Yep cussing on the blog. First clue that I’m overly emotional.)

And I haven’t packed for Philly yet. In fact (shocker) I haven’t unpacked from Ukraine yet. Heh.

So instead of writing about all the joys of the first month, I’m going to leave you with some of the beauty in the pain.

I’ve talked a lot about the first three days of non-stop, mindless screaming from our new little son. (It helps that I’ve spoken with another family who adopted out of his orphanage and some of my  suspicions  were supported.) That was hard. But by day four, I don’t know, I was filled with love for this screamer. It could have been the wonderful prescription medication I was on, but something was different that day. We had just settled into the uncomfortable knowledge that this could be our life now. It could be our life for months or years. And we needed to function despite that. It’s scary when after three days you have no light at the end of the tunnel. Three days is long when your child is screaming at top volume, but it’s longer when you don’t know if it’s just three days or a lifetime.

Want to see a glimpse of day four? Turn your volume down and click here. By day four I loved this little boy. By day four his screams were not high-pitched anymore, and he seemed to be asking for comfort instead of reacting to an unseen terror. I held him on the couch after not showering or brushing my hair or teeth for three days. I held him and whispered love to him. I was able to smile–a small miracle. My husband took a video. We wanted to capture daily life.

Then, and I cry as I remember this, then this happened: This. For the first time ever he came back to us. Back out of the world he was in. I can’t describe how for three days his eyes were just blank, unfocused. Then he started to make eye contact. Then he didn’t thrash when I touched his face. He came back. He came back.

And he made kissy faces. “More kisses mom. Yep right there on my forehead. Perfect.”

When I wrote the blog post about (not) living happily ever after, I was being very honest. I thought maybe people would not want to adopt after reading how we were adjusting. Then THREE people emailed me after that and said that they read the post and were definitely going to adopt. One started the process. Another picked an agency. A third is definitely, seriously considering it a few years down the road. Wow. Wow. Really guys? After I post about screaming? Welcome my fellow crazies! Haha!

They get it; it’s about people.

Now do me a favor and click here. Read  this story and then you can tell me that we’re all crazy. (We won’t argue.) Go ahead. I read that link and cried my eyes out. It speaks truth to me. It lets me know I’m not a freak show for wanting to go back and get another one, or support others getting theirs even though I know it’s so hard. Just read it. (Despite the amazing support we’ve received, we still have the same crowd mentioned in the story.) Do me a favor and just read it. I didn’t write it, but we sure lived it.

See you in a week, friends. Hold onto this promise from me, incredible joyful stories are coming. Just give us one more week or so of hard. Pray for us.

And they all lived happily ever after… kinda.

Sunday, September 9th, 2012

Click to enlarge image.

I started a tradition of drawing really bad cartoons over at my other blog. The above creation was inspired when someone actually said this to me. SOMEONE ACTUALLY SAID THIS TO ME! (Boohoohoo.) For real. Seriously. But  I did not cold cock them. Oh no, I just gently corrected them. And that one  herculean  act of self restraint pretty much means I can yell at the next one hundred people karma free. Pretty sure that’s how that works. Don’t correct me.

(Disclaimer: This is my story as Roland’s mommy. His daddy and sister have their own stories. I may get their permission to share their stories with you, but for now this is my story.)

(Um… other disclaimer: Imma ’bout to get preachy.)

When your child first comes home is a time known as the honeymoon phase. It’s been described as a time where they are so new and well behaved. Then something triggers culture shock or they finally feel safe enough to show you their grief and life gets harder for a time. My girl crush, Jen Hatmaker, describes it really well here.

But for very little guys who don’t yet get self preservation skills, they are brutally honest almost immediately.

When Roland arrived on American soil he was glossy-eyed and shell shocked. I had this wonderful moment with him where after 28 hours of travel and dehydration he let me make a warm bottle of breast milk (donated) and he downed the whole thing and fell asleep in my arms. Precious.

Then he woke up.

And proceeded to scream.

For three days.

Straight.

I spent most of the first three days curled up on the living room floor with my child who screamed and thrashed. (Full body thrashing convulsions.) I held him while he screamed at top volume for over an hour at a time. As he screamed his whole body jerked violently. He screamed until he threw up. I looked at my husband and we both said without a word, “What have we done?”

During those three days there would be periods of “not screaming.” Not to be mistaken as periods of peace or happiness, just… not screaming. We would walk on egg shells until something triggered him. Food triggered him 100% of the time. He had MAJOR food issues. He had sleep issues. He had abandonment issues. He stimmed. He had sensory issues. Changing his diaper was traumatic. Changing his clothes was traumatic. Holding him in my lap facing away from me was traumatic. Bonding was out the window. We were hunkered down in survival mode.

We were in the trenches.

When people congratulated us on our adoption we felt so hollow inside, like we couldn’t accept their well-wishes on account of feeling so broken like we had ruined this. Obviously things got better. Three weeks later I’m full of cutesy Rolly stories and I go around showing off my son proudly. But for three hard days, and about a week more of “not easy” we were in the trenches.  And it was hard on everyone.

Keep in mind that during this time one of our friends had a  tragic  accident where their adopted daughter drowned and now is suffering brain damage, and another family traveling the same summer as us got word nine days before departing to meet their son that he had died waiting for them. Those stories made me cling to my son, despite the hard times.

Things we heard in the trenches:

“I really hope this was God’s will for you.”

“You asked for this.”

“I’m not sure how much we are suppose to take on other people’s problems. I mean how hard is your life going to be now because of this.”

“Adopted kids grow up weird.”

Okay that last one was said by Pat Robertson who is not a real person, but the other three things were said by real people, aka people in my life. Shockingly, these were professed Bible-believers from three different faiths.

I’ve already written a blog post on why the Bible-believing crowd should support orphans which you can read here. In it I site over a dozen Bible passages (not an exhaustive list) commanding followers to support orphans (and foreigners and widows). One I don’t quote much, because it’s always quoted is James 1:27 which says that you’re not really the good religious person you think you are if you’re not helping orphans and widows. God’s will for someone’s life is not some magical feeling individuals get while they’re meditating where they hear a whisper telling them to buy a car or have a baby. God’s will is outlined in Scripture: Love God. Trust Jesus. Give. Seek justice. Do good. Think good. Care for orphans. Help your neighbor. Etc.

Not God’s will? It’s clear as day!

As far as claiming that the Bible calls people to lives of comfort and never to anything hard (or too hard to handle), well that’s a lie. I’m convinced God does not want you to be comfortable. Peaceful, hopeful, content, sure, but not comfortable. And usually it’s something too hard to handle alone. Let’s just look at some Bible-y peoples and their easy lives, shall we? Jesus was  crucified. God is constantly grieved. All of Jesus’  apostles  died in cruel ways, save the one that got exiled which is no picnic. Most of the prophets were killed, all of them went through cruel things. Their lives were the least comfortable. Job was God’s favorite. Joseph too. Moses. John the Baptist. I don’t want their stories. Do you? The Levites were never given property of their own, despite how valuable that was in that day and age, because God was their portion. Every character in the Bible went through hardship for God, because of God. The Bible says to followers, “Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.” (1 Peter 4:12) That’s your Bible, people. One that points towards eternal rewards and not toward earthly comforts.

My experience in the trenches may be limited compared to others.  We think Roland was coming off of something, maybe a drug to make him sleep through the night. He screamed like a mindless crack baby. And whatever it was in his system he had to come off it cold turkey. Our friends who adopted from a different orphanage in the same country were given the names of the medications their son was on and they were able to get the prescriptions in country and have their child come off it gradually. Not us. Roland’s little system just crashed. Remember the breast milk and the child in my arms when we first got home? I held that memory through the next miserable 72 hours.

He needed his Mama. Even during the worst of it if I moved away from him a few inches he would roll towards me while thrashing around. He felt safest to scream while right up against my leg. (Yay.) Walking the halls with him helped. I whispered love to him when I didn’t feel it, when I was a shell of a person. My ears were always ringing. He was so angry.

Three days. And then Roland was back. Well hello there Mama!

My sweet, goofy boy.

We still had a long way to go, a lot to grieve, but we had support. We had meals from close friends. We had emails and Facebook messages. We had other adopting families tell me that it’s okay to feel the “what the bleepity-bleep have we done” feelings and to love your child when that biological pull is not there. Roland still had the occasional melt down, especially over food or if he thought we might be walking away from him, but things were better. Everyone was breathing. Laughter came back. When he threw a screaming fit, Laelia and I would just shrug at each other and have an entire conversation through it while I rubbed his back. We were adjusting and eventually I could bring him out of his fits quickly. I was starting to get to know Roland and learn about his trauma and his triggers.

After those three days, that biological pull was there. As if I’d birthed him. Amazing.

Now my son is not just a screamer, although his nickname is Mr. Screamers, but so was Laelia’s when she was little. Just imagine the jolt to his system! He had never been out of that orphanage. Never. been. out. I made him suffer through his very first car ride (which scared him), his first rain (the umbrella scared him), his first walk through the city (which scared him), his first  chew-able  food (which he choked on), his second chew-able food (which he threw up) his first three plane rides (trauma), a new place to live, new smells, new foods, new expectations, new sights, traffic noises outside and a whole host of culture stress and shock.

(But I gave him kitties and he loves kitties. So there you go.)

But it got easier. It got better. After only a week if someone said, “Where’s Mama?” he would turn around and put his arms up for me with a huge grin on his face. I was told to hold and carry him everywhere and I have. I’ve held him while peeing. Don’t judge. ;) I’ve gone days without showering or brushing my teeth like having a newborn. It took a week for him to have a meal without a melt down. Cheerios were a form a torture at one point, and now they are his favorite food. We still are feeding him baby food out of ziplock bags with the corner cut off to squeeze in his mouth, but he ate veggie  lasagna like a champ! I could dry him off after a bath without towel trauma. He started cuddling during nap times. He let me change his shirt without crying. His pants. His diaper. Dear Lord his diaper.

Oh, and I got a tooth brush in my son’s mouth for the first time in his life. Where’s my medal?

After two weeks we could do diaper changes while laughing and playing. He drank his first cup of water without it coming out his mouth or choking on it. Meal time no longer was traumatic and he no longer freaked out if I had to get up to get something during the meal. He also no longer ate until he hurt. He was trusting us to care for him. He was trusting food would still be there. He was gaining weight.

Haven’t seen  stimming  since the first week.

Roland is 23 months old, but had a mental age of 9 months at the time of meeting him. After two weeks of us visiting him in the orphanage daily he was up to a 12 month mental age. Now after a few weeks at home he’s up to 18 months on a good day. That’s what love can do. He can say his sister’s name. He can say kitty and then point to a kitty. But when I try to get him to say Mama, he just gets excited and throws himself into me as if to say, “You’re right here.” :) He said, “Ma ma ma ma?” after a nap the other day and my heart simply exploded with love.

After daily stretching (which he lovessssss, not) his elbows gained 15 degrees of ROM on the right and almost 10 degrees of ROM on the left. For those of you without experience with arthrogryposis and range of motion, that’s a good thing. It means his elbows can bend a slight bit more. It means changing his clothes is easier and soon he can start feeding himself long soft bread sticks. He’s already shown an interest in self-feeding.

But besides the very real triumphs and glorious stories of my son overcoming, well, everything, the real reward is in our changed perspective. I got to experience first-hand the redemptive work of God that he did for me. The Bible says that God adopted us. We are heirs of God and co-heirs (with equal portion) of Christ. The Bible is full of adoption language! Check it out: “Yet to all who did receive him, to those who believed in his name, he gave the right to become children of God.” (John 1:12)  What a life-changer this is. I thrash and scream at God because I don’t understand him or his ways, and I certainly don’t understand his care of me. But God loves me. Forever.

***Roland, it’s mommy’s job to love you. You’ve already given me more than I could ever give you. I would take you again in a heart beat. You are mine.***

Please consider adoption. And if you do not qualify legally to adopt, go here, pick a  category, find a baby and do something, anything for that child. Or go here and support an adopting family. That counts as caring for the orphan. Orphans are God’s very heart.

The story of Roland continued

Saturday, September 1st, 2012

“I will not leave you as orphans; I will come to you.”  John 14:18

Being at home was surreal. We were legally a family of four, but could not claim our son from the orphanage until after the appeal time ran out. Not that we didn’t have plenty of distractions. I was unpacking and repacking, Charley was getting documents notarized, Linda (Charley’s sister) was moving in, Niki (our roommate) was getting ready to move out and Laelia was settling back in after a lot of travel. We were also trying to get return tickets set up, which after some back and forth turned out to be one-way tickets. I told Chelsea we didn’t know when we would get to come home. I’m super comforting like that. ;)

When Chelsea and I got to the ticket counter we were told that Ukraine may not let us enter with one-way tickets. It was pretty funny. I also think the guy thought Chelsea and I were adopting as a couple. Let’s just say you get a lot of strange questions when you travel with an empty car seat stroller (that Germany liked to lose).

Traveling without children is glorious. I highly recommend it.

When we landed I recognized Niko and all the sudden realized how comforting and familiar Kiev was. There’s the lemon and chocolate ice cream and there’s the random people in my personal space and there’s where I get  grivnas for my dollars and there’s the unbearable heat (which happened to be a record-breaker for Kiev). Home again home again. :) We were asked if we wanted to wait around for an hour for another family. It turned out to be Chris and Julie who we started this whole process with! Super exciting to see them again! In fact we also got to meet several adopted families who we’d been Facebook friends with but had yet to hang out with. It was a lot of fun!

AMC mommies

Then we settled into our apartment. Chelsea and I scored a better apartment than what my family and I shared a couple weeks earlier. We hauled some water up there and battled the multiple locks to get in. (Three locked doors until you get in the apartment, five locked doors until you get into the bedroom with the  meager  AC unit where we were huddled.) So we were plenty safe. I was so glad to have a friend for this part of the trip.

I’ve got to say that for the first week it was like a vacation. We did a lot of tourist-y things that I couldn’t drag my daughter to while we were here the first time. Plus I could now find my way around. Chelsea wouldn’t sit still so we had a lot of adventures. :) We mastered the metro. We saw all the sights. We visited anyone who was in Kiev for any reason who we kindof knew from Reece’s Rainbow. One night we got on a bus late at night going “somewhere” (we can’t read the signs) and got off after about six stops and found our way back. Just for fun. This was a grand adventure.

While I was gone for the two weeks, Laelia had learned two new tricks (Linda was taking over PT at home). She learned to walk down a step with her crutches (video here) and open doors (video here). She could not wait for me to get home and show off her skills. I was able to Facetime with her one morning and she was so darn cute and showed me how she also learned to lock and unlock the doors. (Ut oh! Haha!) She said she missed me and it about broke my heart. I love my little girl.

The first full day in Ukraine was a big paper chase. We were in a car for over six hours just so I could sign three pieces of paper. It was killer. But I finally got my son’s birth certificate! It now listed his new name and me as his mommy! That was super exciting.

At least they assure me that’s what it said. I can’t read a word of his birth certificate. Our last stop that day was to change his tax code. I guess it’s like our version of a SS number. They need to officially delete (or change, I wasn’t clear) the tax code to show that Yegor no longer existed now that his birth certificate has been changed to Roland. This needed to be done *before* we could apply for his passport. After waiting for hours it was clear something went wrong. Our driver was late to pick up the next family from the airport and we needed to leave. We just prayed it would work out.

It didn’t.

We couldn’t get Roland and take him to get his passport photo without this code change. We couldn’t get this code change. If we couldn’t get the process started on his passport then we couldn’t leave. And without reason to visit (like to get official stuff done on his passport) it was hard to get a driver from the team to take us to the orphanage since there were so many families in need of the team this summer. I posted the following plea for prayer on Facebook Thursday night: “We hit a snag in the paperwork processing part of this adoption. I’ll just say something went wrong and it kept us from getting Roland’s passport photo today or seeing him. It’s been five days and I have yet to hold him, and it may be four days before we can move forward in this process if they don’t fix it tomorrow before the weekend. We’re now behind and may be looking at more days here.”

The next day we waited around for hours for Niko to call us. Finally we got word that we could move forward and at least get the passport photo taken, although the problems had not been completely resolved. We jumped in  the car and drove to his orphanage. I was so excited to see my baby again!

First we had to drive down the road to get a picture taken for our embassy appointment. Upon entering the car for the very first time Roland burst into pathetic, fearful tears. It broke my heart. I started singing to him and he only  whimpered  occasionally after that. Cars are scary. (Ukrainian traffic is more scary.) Once out of the car he hammed it up for the first pictures. He is so darn cute! Then we had to make the long drive to Kiev to get his passport pictures taken. I sang and rocked and comforted. He did okay, considering this was all so new, with only this occasional whimper. It was his nap time, but he couldn’t sleep through something like this, even with the rocking motions. His eyes were wide the whole time.

I sang every song I could think of to him. From Christmas songs to Take Me Out to the Ballgame. I started singing How Great Thou Art, but when it came to the line of, “And when I think, that God, his son not sparing, sent him to die, I scarce can take it in,” I started totally choking up and tearing up. That was a no go. Wow, now that I have a son… well that means a lot more to me.

Finally we arrived for passport application and pictures and then got in the car to go all the way back. Poor little guy handled it like a champ. I think he was relieved to be dropped back off at the orphanage though.

Then the second of our delays happened. The person in charge of processing our passport had some sort of death in her family and was unable to be reached. So now we were waiting on a passport that was not coming, couldn’t reach the lady doing it (God forbid someone else takes over in this case), and without a passport in hand we could not finish our embassy appointments. We ended up going to the first embassy appointment without the passport. They said we had to bring it to our second and final appointment the next day. We hoped and prayed and waited but it never came. Also there was no word on if it was coming.

We had to cancel our second embassy appointment.

I spent $40 to visit the orphanage for seven minutes that day. It was suppose to be 30 minutes, but between delays and the nannies “getting him ready” our time was only seven minutes. I had just enough time to promise him I would come back for him. (It was either leave then or try to find our way back with a $100 taxi who didn’t speak English.)

The day we were *suppose* to book our tickets home  had come and gone. We were stuck. Chelsea had to work on Monday. I had an important medical appointment in San Diego for Roland on Tuesday with an adoption specialist. It was stressful. And part of the stress was that I didn’t have my little boy who was now legally mine.

So I made the decision to take Roland from the orphanage without having his passport. They recommend taking your child out of the orphanage closer to when you travel home so as not to confuse them with new living arrangements that don’t last. But the thought of leaving him in the orphanage one more day just hurt my heart. So I told the team I was taking him. When we arrived at the orphanage I was asked if I had an outfit for him. I didn’t. I had plenty at the apartment, but was under the impression that they sent them home with one. (They do.) They said, “Then maybe you wait and get him tomorrow.” Nah uh. I just offered to pay for the clothes on his back. It was  unnecessary  as they gave them to me. (Girl socks, pants four sizes too big and a shirt and sweater.) I also requested the blanket on his bed. They handed me a very stinky sheet. (It made my eyes water.)

I had asked to see how he ate his lunch. They put me in a white coat and led me up to the feeding room. Every child sat in a little chair and ate with a giant oversized spoon. Every child except Roland who was on the floor. They told me they fed him tea and stew. They warned that Roland has a tiny mouth and to put the spoon back in his mouth with little tiny bites on it. He didn’t know how to chew and just swallowed the food whole. Roland was “done” before the other children and he sat there watching them eat. Then I took him upstairs to finish signing him out of there. I felt strange in my white nanny coat.

This is the director of the orphanage and our driver, Niko. Both of these people are wonderful, and our family owes them a great deal.

We walked out of the orphanage forever. Here’s the video I posted in a previous teaser post.

He would never go back there. Never be left alone. We took him back to our apartment in Kiev. By this point the unbearable heat was gone and it was raining and cold. We walked around in the rain trying to find diapers since our local pharmacy (because they only sell diapers there) didn’t have any. (The umbrella scared him.) Roland was in the city with it’s noises and he was completely overwhelmed. He  buried  his head in my chest and threw up down my shirt. But finally we found some diapers.

And finally, like magic, the passport came through! We drove out to get it and held it like it was made of gold.

We quickly had Yulia set up a new embassy appointment for Thursday and booked flights home for Friday.

Unfortunately our friends Julie and Chris didn’t end up getting their passport in time and had to cancel their flights home. We visited them and their new son, Ryan, in their apartment before we left. Isn’t Ryan adorable?! They are the same size, but Ryan is several years older.

In Kiev Roland explored the apartment. He loved to turn on the microwave. (Who puts a microwave at toddler level?!) He loved to open and shut the hall door. When I tried to feed him lunch I realized that Roland has a lot of feeding issues. For one thing he doesn’t know how to chew. And I wasn’t about to stick a large spoon down his throat. The first stupid thing I did was feed him a grape that he choked on. Ugh. You’d think I’d never had a kid before. Then we tried little bites of pasta. We settled on baby food in jars and he happily ate that. Little guy couldn’t even bite off a tiny piece of graham cracker. Both Chelsea and I were pointing at our teeth and making exaggerated chewing motions. He sucked everything like a bottle (like chewy granola bars) or swallowed it whole (he gummed and swallowed an entire banana).

Roland got his first real bath. He loved the splashy fun. It was hard to scrub him as he was just a blur of motion. I learned he hates to have his little hands scrubbed so we had to pretend to play games with them. He was so happy. And he finally smelled wonderful. It was easy to curl up with him that night and smell his shampooed little head.

When it was time for bed I put his sheet (eww) on him for a familiar smell and curled up beside him. He didn’t move from that spot and slept almost through the night. This would be the last time this would ever happen. I’ll explain more on that later. It was so nice to sing him to sleep and hold his hand until he drifted off. His arms don’t bend so he sleeps with them out like this.

It had just been one day, one huge day, and his life was forever changed. He was loved. He would never be left again.

Our ride to the airport showed up at 3:00am the next morning. Roland said goodbye (he can wave bye-bye) to the team, and to Erika (Bernadette and Mason‘s mommy) who enjoyed loving on him. Travel was hard, not as hard as it could have been, but hard nonetheless. Roland still has belt burns on his skin where they made him put on a seat belt for the first flight and he twisted and freaked out. The next two plane rides I did not make him wear it. He freaked out and would slide to the floor, then would fall asleep, then would be fine, and then freak out again and slide to the floor. He threw up. He couldn’t keep liquids down. He choked on a tiny piece of bread. He pooped a ton and had to get changed on the plane which he hated. He screamed a lot. I’m sure the other passengers loved us. :) I got through half of the Avengers movie and that was the only break I really got. Even when he was calm I was still worried about him.

We arrived home completely worn out. Just by accident we ran into some church friends in the airport parking lot on their way back from a trip to visit family. I got to show off my new baby. It was fun and I was starting to regret not having a big reception when we arrived. (After 28 hours of travel, one big cheering crowd can’t really add too much more to the trauma, right?) Roland got to see his daddy for the first time in almost a  month. Even though I was starting to get sick to my stomach (probably from a bug I picked up), I was so relieved to be home. We were home.

And life was about to get interesting. And hard.

To be continued…

The story of Roland

Sunday, August 26th, 2012

I titled this blog post, “The Story of Roland,” but this isn’t really his story. There are parts of his story I will never know. Parts he’ll never be able to communicate to me. His story started in a hospital. He was born to parents who were married and waiting for their first child. He was wanted, probably planned. But the contractures on AMC kiddos are the worst at birth. I remember the first time I saw my daughter’s twist of limbs that would not move and I was pretty scared. But there was a social worker, several doctors and nurses, a geneticist and lovely prescription medication at the ready. I vaguely remember the social worker listing all the resources we would have available. I was grieving heavily at the time so don’t remember much, but we were left with many brochures for when we were ready. I doubt any of that happened for Roland’s parents. They named their son Yegor. They gave him their last name. Then they signed him over to the government and left him at the hospital. He was moved into the orphanage to be fed and warehoused.

He was never visited.

Until two weeks before we showed up. That’s where his adoption story begins.

A family came into the country. They were looking at babies to maybe adopt one. They didn’t want special needs, but were willing to look at children with something “fixable.” They visited Roland because he was still pretty little, but because of his special needs they just couldn’t commit to him. They decided to put off committing to him for two weeks. Their appointment at the Department of Adoptions was set for a Monday. We showed up for our Department of Adoptions appointment the same day, a mere couple of hours BEFORE they did. We committed right away. By the time they showed up the little guy was taken.

This ordeal gave our facilitation team grey hairs. They knew we were coming and that we knew about arthrogryposis and we were a better match for Yegor, but they could say nothing. If the other family had committed to him before we showed up then we would have had to turn around and go home! I knew about the other family as we waited for our appointment that Monday and stressed and worried about it until we were safely done with the process that day.

We met our little guy for the first time that Wednesday at 9:37am. For the video click here.

When they brought him out it took my brain a full ten seconds to recognize him. His strawberry mark was gone and there was a thin scar in its place. His head had a huge flat spot from being left in a crib which changed his features slightly. His hair had grown out, his eyes had settled on brown and he had grown. I actually saw his legs before I realized I was starring at my baby. Roland (or Yegor as that was still his name) was shy. He was scared. His little heart was racing. His little lip was sucked in. He couldn’t make eye contact. He’d already been handed to strangers a couple of weeks ago who never came back. He didn’t know what to think.

I started to sing the Disney song, “I know you, I walked with you once upon a dream…” which was fitting since I had been dreaming about him like crazy. Slowly slowly he came out of his shell. He started to ask for things. He pointed at a toy and said, “Do.” (We would later call this the “language of do.”) So I took the toy off the window ledge and we started to play with it. Click here for the video of Roland learning to relax around us and start to play.

By the end our little guy’s personality was coming out. This video here is more like he is today.

One nanny asked if we clearly saw his arms and legs. Then she carefully asked us if we still wanted to adopt him. Still? We were so busy in our own little world we had forgotten that we had papers to sign. Still? Oh right because his legs and feet are bent? Or his arms are straight as rods? Why in the world would that keep us from wanting him?!! We replied, ” Still? Yes! Absolutely!” And then we listened to make sure the interpreter put enough  emphasis  into the words.

We got the chance to speak to the doctor on staff about Roland too. She knew that Yegor was severe, but after meeting Laelia she got some hope. She asked us all sorts of questions like how many surgeries we think Roland would need and if he would walk. I answered that he would absolutely walk one day. She looked at Laelia and agreed with me. Then she asked us very hesitantly if we wanted to adopt him. (Remember the last family to visit him were just “looking” and not serious about him.) When I enthusiastically said, “Da! Da! ABSOLUTELY!” she got all emotional and grabbed my hand to warmly rub it and shake it. She started saying, “Good good. You are good. You are very good. Thank you. Thank you.”

Do I want my gorgeous, talented child? Still? Yes and please. Am I in silly backwards world?

As far as arthrogryposis goes, Roland has joint contractures in all four limbs, but he also has strong muscles. (I’ve been in email contact with Dr. Judith Hall about this and we’re trying to figure out if he has amyoplasia or not.)  His fingers and wrists are affected, but barely. His elbows and knees are the most severe. His feet are clubbed (bilateral). He has AMC in his jaw and it’s hard to open his mouth wide or keep 100% of any liquid in his mouth, but he’s getting better at it.

As far as other needs, he’s an orphan who has spent his whole life in an institution. So yeah. He was given a mental age of 9 months old. (He is 22 months old.) He is not attached to a caregiver. He gets scared of things outside the four walls he grew up in. But he’s a tough little guy and nothing keeps him down for long. Within two weeks of visiting him he was up to a 12 month old level and could maintain eye contact. Booyah.

We spent every day with him for about an hour in the mornings. We drove two hours a day in crazy Ukrainian traffic. I got car sick every. single. day. Laelia usually fell asleep so that helped. :)

Going crazy!!!

Konk.

Nausea remedy.

Everyday we saw more and more of our handsome little man come out. And he started to recognize us and put out his arms for me when he saw me. We loved on him a ton for the hour to an hour and a half we saw him in the mornings. Cue the montage!

Is that enough cuteness to crash your computers? Good. It wasn’t all playing with Roland though. We also had to notarize stuff and drive to appointments. But our Reece’s Rainbow team held our hands the whole time. They really are an amazing team of people who are good at this!

At one point in our trip I started to get upset at myself for knowing about this little boy for a year before we committed to him. I raised funds for him and shared his picture on Facebook and wrote blog posts (on this blog), but was unwilling to leave our life of comfort and follow God’s heart for the orphan. How stupid and short-sighted was I?! I cried over it. I cried over my son’s life. Then we picked up the pieces as a family and moved forward to right those wrongs.

We got word that we had a court date, but these things aren’t set in stone so we didn’t count on it until a final phone call from our facilitator. The next morning we got to see Roland for 30 minutes before we had to drive to court. It would be the last time we would see him until after the appeal time ran out. I promised him I’d be back for him. I promised him I’d love him and get him out of there. I promised I’d fight for him. Then they took him (always a sad end to every visit) and I left to go change into something proper for court.

Nothing screams “courthouse” like bubblegum pink.

We passed court!

They always ask why you want a “disabled child.” They don’t get it. We were ready. The judge and jury deliberated for only a couple minutes before they called us back in and rattled off that we were Roland’s parents. His name would be changed to Roland Quest Wesley and his birth certificate changed to reflect us as parents. We just stood there trying to listen to the interpreter and absorb what had happened and what would happen next. We walked out of the room and Laelia asked what happened. (She had been sitting semi quietly in the corner playing with the orphanage director’s purse.) I told her we had passed court. She started cheering, “Yay we get baby brother!!!!” while hugging us. :)

Then we packed all our things quickly since our ride was coming to pick us up and take us to the airport at 3:00 a.m.

Laelia did really well for the next 28 hours it took us to get home with three lay overs.

Then we settled in at home, empty-handed and waiting. It would be ten days before my friend Chelsea and I would head back for two weeks to finish this process.

To be continued…

Three steps forward, one step back

Thursday, March 15th, 2012

So after our three hard days of evil AFO adjustment came our breakthrough: Laelia slept through the night and woke up without her face all scrunched up with pain. We relaxed and considered it a victory. The very next night Laelia slept a bit and then woke up screaming. For all our caution the shoes had caused a deep red mark on her left foot. She cried for twenty minutes after I removed the brace. I finally put her in a hot bath and the heat soothed the pain. She stayed in the bath for three hours begging me not to remove her. With a red mark that fierce I can’t put the AFO back on and I can’t tighten the straps. The orthetist can’t see us until Friday to adjust them either. Crap.

I put in mole skin and that helped a bit, but they still couldn’t be tightened. I really did not want to lose three days worth of pain, but didn’t want to make it worse. A friend on Facebook (thanks Martha!) suggested New Skin (the liquid bandaid) to put on the red marks to protect them from the brace. Apparently that’s what ballerinas use when their shoes are rubbing holes in their feet. It was worth a try. I called Rite Aid to see if they had some. They had it at the counter when I ran in. I explained that it was for my daughter’s braces and I’d never used it before. The gal ringing me up immediately tried to stop me from buying it! She said stuff like, “You don’t want this. This is like for burns and stuff. Let’s find something else.” And I was like, “That’s fine. This is what I want. I will… buy it… now… thank you?” Finally she said she would never put this in a child’s mouth and I realized our communication error. “No, it’s for the braces on her FEET, not on her TEETH!” We both laughed. Now that I’m back home and smelling this stuff I want to thank her even more. It’s strong, like an oil refinery. I scratched my face and it burned my eyes a little!  If this was going anywhere near a child’s mouth that would be abusive!

Thankfully the mole skin plus the liquid New Skin did the trick. She was able to wear her braces. I think the left side is a little loose because it’s hard to judge when you’ve packed it with mole skin, but hopefully it’s fine. I hate this stuff!

And just for the record this has nothing to do with her surgery. This has everything to do with her feet missing heel pads and having been severely clubbed at birth. The ankle foot orthotics (AFOs) are killer because we’re trying to avoid yet another surgery on her feet. Her knees are doing okay post plate insertion. She does not like to bend them though, and that’s probably good because we’re not suppose to work on bending them until they’re straighter. Still when she’s not in her protective KAFOs (that keep her knees straight and secure) then she will hold her breath when I pick her up because she’s worried I’ll do it wrong and bend those little knees. But she is standing again and taking steps (although not as many as in her casts), and she’s getting better everyday.

Well now that Laelia is feeling only a slight irritant instead of major pain, she has become only a slight irritant instead of a major pain. (Come on other mommies, back me up here.) One day I couldn’t take it anymore. She’s been acting out and whining a lot over silly things. Finally I called my husband and said, “I can’t take it anymore!” And I loaded Laelia in the car and we drove somewhere. Anywhere! Just needed to get out of the house. We drove to a fish store actually. Laelia wheeled herself all over the place and the whole time kept gasping and shouting out her discoveries. She loves fish. And yes I bought our family it’s first fish. ($4.99?!! Didn’t fish used to be 20 cents?!)

Meet Rocky!

Laelia’s eyes got wide at the thought of getting and naming her own fish. I was so proud of myself for thinking up a way to teach my child responsibility instead of just staying home and strangling her adorable, annoying little self. She promised to feed it and play with it and love it. We got it home and the first thing she did was pick up the container and start shaking it while loudly singing, “FISHY FISHY I GOT A FISHY!!!” She’s seen Finding Nemo so many times and yet has learned nothing from Darla apparently.

After explaining how to care for her fishy, we got it’s food out. Laelia had to finish all her dinner before she could feed the fish. (We had fish for dinner, is that wrong somehow?) Laelia gave it a few balls of fish food that were the size of dust particles before announcing, “This is boring! Can we feed him the entire bag? Can I play with him? Can we get another one?”

*sigh*

Adjustment following AFOs: Seven tricks

Sunday, March 11th, 2012

These are the things that make us quite blue.

Here they are now:  Pain One and Pain Two!

Laelia  got new braces this week. Now you’re probably wondering why that means we missed an art show at the Park Gallery (where Laelia was one of the artists), a birthday party, church  and a couple of promised  trips to the zoo. Let me explain.

There’s nothing I dislike more than painful ankle foot orthotics (AFOs). My husband and I have considered surgery over  using AFOs (not a good idea by the way)  and had our worst parenting experiences following getting new AFOs.  Dark times.

We have been through this before, but that only makes it marginally easier. When you’re looking at getting casts off and seeing your darling child’s legs again all you think about is bath time and putting them in real pants. What no one seems to warn you about is that you’re in for pain. New AFOs that are really doing their job WILL make your child weep in agony. (My first experience with AFOs when Laelia was a bitty baby went something like this.)  This time we at least knew what we would be looking at.  Still we got our hopes up just a bit that it would be easier now that Laelia was older. It wasn’t.

When I was  younger I would get  the braces on my teeth adjusted and they’d hurt. It was done after school and all I could have for dinner  a few hours later was  aspirin. Sometimes I couldn’t sleep. And I was one whiny teenager during those first two days  following an  adjustment.  AFO pain is suppose to be comparable with that, only with a little kid who could probably out-complain someone who was just hit by a bus.

(Speaking of, Laelia scared me to death when she started to scream her head off in the middle of the night. It turned out  she was frustrated with the volume control for her movie. Of course everything is major when you’re in discomfort, but still.  I gave her a stern look and asked her, “When are you allowed to scream like that?” She hung her head and guiltily replied in her little voice, “Only when I’m on fire or being eaten by a bear.” That’s right!)

So how do we get through new AFOs? There are some tips and tricks.

#1. Send husband far, far away.  My super wonderful husband  is mush when his daughter cries. Plus he works two jobs to support us and our adoption and needs the sleep. (Plus I have a personal theory that hardship makes women stronger and reduces men to tiny, helpless children. *ahem*)

#2. Remember it always takes three days with AFOs. After three days life gets normal again. Keep your eye on the goal. You can do almost anything for three days, right? Plan on getting no sleep for those nights and treat it like having the flu. Call in sick and hunker down for some hard times.

#3. The trick is to  not ease up on the dorsiflexion  straps. Loosening the straps leads to a month of this and this. I’m serious. It also leads to months of whining about loosening the already loosened straps. This is the first time in our child’s life that I have not loosened the straps. I always have caved on this point in the past. (What can I say?! I’m weak!!) Don’t do it!

#4.  Medicate the kid. Now when it comes to medication I always hesitate. I hate “unnatural” things in my body, even when they’re good things. And being a first time mom I have been scared to put anything into my precious daughter’s system, especially when she already has to have meds after surgery. But medicine  takes the edge off. So this is the very first time I actively asked for a prescription for pain meds before starting this new AFO process. It made me feel icky, but I’m glad I did it. It helps on  a physical level and also on a psychological level. When Laelia knew she was taking the pain meds she started feeling  better. When we hid them in her food she only felt marginally better.

#5.  Take the AFOs  off and check the skin.  I know it’s hard to even look at these things let alone touch them. And yes your child will scream while you remove them and then scream louder when you put them back on. But you need  to check for redness, “work” the straps and change sweaty socks.  Wet socks  lead to  skin breakdown (click on that link only if you want to see bloody pictures of my child’s foot). Then you put those braces right back on  without loosening them! Stay  strong through the begging and pleading and shaking. (Kick your husband out AGAIN when he comes to make sure his daughter is not on fire.)

#6. Be super mom. It was hell the first two nights and  we got next to no sleep. We watched kid’s shows all night while I rubbed her back and legs and the tops of her feet with the braces on.  Hour after hour after hour. She cried and whined a lot. I had to sometimes leave the room to go punch a pillow and cry before coming back to her. (A crying child does not always result in sympathy, but instead you just want them to stop!) But I always  let her know I’m in this thing too. I stayed firm about  not loosening or taking off her shoes until she finally (30 hours later) stopped asking. We got through it together.

#7. Don’t loosen the straps.  Did I mention that already? :)  Some say to work up to the lines, meaning start out with them loose and work up to full tightness, but don’t ever start tight and loosen! Not worth it. (For the record, we didn’t do that. We started with them on the lines and stayed there. That way it would be really hard for three days instead of a little less hard for a week or two. Last time an ulcer developed. Then you back off. We were lucky this time.)

The pay off:  Last night (day three) she complained when I put on the straps but  then she slept for 14 hours straight with those braces on. She woke up saying that the pain meds had worked and  her feet  didn’t hurt. She has finally adjusted. And her feet, although a bit red in places,  look beautiful and have more range of motion.

Yay! Ugh. Now what day is it? *collapses*

See you in six months!

Thursday, March 8th, 2012

It doesn’t matter how ready I am or how many business cards I hand out explaining  Laelia’s condition, people will still look at a girl in full leg casts and ask how  we broke both her legs. And that’s if they’re nice. Most whisper in vicious tones to each other loud enough for us to hear as we stroll past. On our way back from our surgery trip last month a flight attendant guy asked, “How did you guys end up  doing both legs?!!” I guess he was pointing out it would be hard for a four year old to do it alone and her parents must have helped push her off the cliff. Most just say, “Poor thing,” as they walk past. I hate that most.

But I found the best way to avoid all the drama and have some great laughs and conversations. I simply wrote “skydiving accident” on her shirt.

I got lots of laughs and lots of random people coming up to us saying they liked her shirt. Only one lady actually asked me, “Was she really in a skydiving accident?!!” It was great. :) After the shared laugh I would just say, “She has an orthopedic condition,” and it was enough. No more strangers’ nasty comments, and even  the shared whispers behind our backs were light-hearted. My favorite: the “poor little thing” people added, “skydiving is rough for anyone.”   :)

Sunday everything went wrong that could have gone wrong. We got to the airport and realized we only had parts of Laelia’s wheelchair. Charley did a mad dash back home as we checked into our flight. They held  the plane  for us. We made it with one minute to spare. It was super stressful and wouldn’t be the end of the stress. In every flight we had that day we displaced someone from their seat who was not happy with us. We had no idea that because of Laelia’s casted, unbendable legs we were required to put her in a window seat in case of emergency. No one likes to give up the window seat  we came to find out. One guy refused to talk to us even when I was thanking him for moving and offering him my free television. (Later he paid for  Laelia’s milk we found out. Apparently  he got over it!)  We landed and ran to our next plane. We boarded quickly and then sat on it for over an hour and a half as they did maintenance. The power went out and it was a little scary. Finally we were up in the air, but some people would miss their connecting flights including us. (Remember these trips are three plane affairs for us.)

During the second flight Laelia announces that she has to go potty. Of course if the plane had left on time she wouldn’t have had to go on the plane in full leg casts. I gently carried her in there, but her legs were hanging off the potty and we both didn’t fit and I bumped her head and her right leg. And she ended up being in pain and screaming for a solid twenty minutes, holding up the line. She didn’t even go potty. Lots of angry looks later we landed. The flight attendent told me that if I missed our window to get to the RMDH that maybe the airline would put us up in Milwakee. I explained that then I would miss her doctor’s appointment.  I got in the line to learn my fate and  was standing behind a family who was put on flights to Philly that would arrive at 10:30 pm. They were told they were lucky since it was the last flight they could book. My stomach was in knots because if we arrived that late we couldn’t stay at the RMDH.

(Oh speaking of the RMDH I called during this time to make sure we had a room and was told we were not on the list! Lots of stressing later they ended up finding us a place to stay, but only if we arrived by 8:00pm! Now it looked like we wouldn’t make it there!)

Well it turned out they had room on a plane for two people but it took off in 30 minutes and was with a different airline! We had to run out of the airport and then re-enter with US Airlines and do security all over again. (Where they separated me from my daughter, which made me crazy and I complained loudly until we were reunited. Not cool TSA.) We barely made that flight before the doors closed. And then we sat there as it turned out the plane was covered in ice. (I nervously counted every minute.) They sprayed it down for a while before we could get out of there. I called RMDH when we landed and said we would arrive after they closed. They said they would wait 30 minutes longer (until 8:30) only because they had a volunteer willing to wait. But they just could not wait any longer than that. Of course we exited the plane and discovered that Laelia’s wheelchair was missing. (Of course.)  We were the only ones on the plane with the cleaning crew before they found it and brought it up to us. Then we raced to get our luggage only to discover it was lost. (Not joking.) Not just left behind, but not in their system. I explained that we had been on three different airplanes and two different airlines today and they explained that it would be a miracle to get us our luggage. That’s when it hit me, besides all of our clothes and coats and toiletries, Laelia’s medication is in that bag! Ugh. So we filled out our paperwork for missing luggage and raced to the shuttles for Thrifty Car Rental.

The shuttle didn’t show up and the security guard hadn’t seen it in a while so he  suggested we take a taxi over to the rental place. Just as we were about to do that he comes running after us to tell us the shuttle finally came. We made it to the rental car place, but they left us on the shuttle! (I’m still not joking.)  The guy driving got out to help some VIP members get settled and didn’t come back. I couldn’t operate the wheelchair lift myself and kept waving that we were on the shuttle and no one came back. I got on the intercom equipment but couldn’t figure out how that worked either. Just as I was about to start honking the horn wildly the driver came back. No word. No apology. Just worked the equipment as I stood there in tears. We ran in the building to a long line. Oh no. RMDH had just closed for the night, but we still had that 30 minutes they offered us.  I cut in line and asked to speak to a manager. (I knew three managers’ names and was ready to demand them ALL in a minute.)  He helped us get our rental car  since we already had a reservation. Then when we got out there our rental car seat was too small, not in there properly and would not adjust easily. And it was against the law for him to help me with it.  I fought and silently  cussed at it in the cold as Laelia (as she’d been doing this entire trip) whined. I looked at her and said (I thought very calmly), “Not another sound Laelia.” Then  I finally got it in there, adjusted it  and  put Laelia in there when  the ridiculous harness pinched her. The thing was total and complete crap. Then I raced to the RMDH. Half way there my daughter asks, “Can I talk again now?” I had forgotten I said that! What a good girl she is! I was stressed out of my head, but managed to sing Old McDonald Had a Farm the rest of the way there with her as she laughed. (And on his farm he had a bridge! Bridge?!! Hahahaha!)  We arrived at 8:31pm.

Now they didn’t have to let us in the building. They have a strict rule we were breaking by coming so late. There were security issues involved here. But they saw how broken we were and how tired (and heard about everything that happened) and  in their way the RMDH made it all better. Laelia had a rough day, but they handed her the most gorgeous Ariel the Little Mermaid doll in the world. It’s part of a wonderful  collection we had seen in Disneyland and we wanted one so much!  She cuddled and kissed it and was the happiest little child ever. (“This is the best day ever,  Mama!”) We checked in and had our first real meal  of  the day. It took a while to calm down from all of that, plus we had to get toothbrushes, a pair of pants for Laelia for after cast removal the next day  as well as other things (like a ton of Pull Ups). We finally got down at midnight.

Laelia also developed a sty on her right eye. Ugh.

At 2:00 am we heard pounding on our door. I quickly got dressed (through the pounding) and answered. They had our luggage, but I had to get all the way dressed and go down the elevator and  outside in the cold to sign for it. I grabbed shoes and with no coat  ran to sign for my bag. So we were now fully awake. I  had Laelia’s medicine that I put in her cup and was thankful at least that I could shower and put on clean clothes. (What I shouldn’t have done is dig through my suitcase so messily. That would come back to bite me later.)

Our appointment was at 10:30am, but we probably only got four hours of sleep (and not in a row) after a long, stressful day/night. We ended up waiting for five hours to see the doctor. We fell asleep on the table waiting for the KAFOs to be adjusted. We got out of there at 6:30pm and missed dinner at RMDH where we were hoping to meet up with more AMC families. (There were about ten other families with AMC there. Just further proof that this is AMC mecca. It’s so wonderful to see all these kids through the years. I now believe completely that every child with AMC, no matter how affected will achieve ambulation!) We went straight to Rite Aid to get Laelia’s pain prescription, but they had trouble with our insurance card.  We got back to the house around 8:00pm when I discovered that they had NOT included a doser for measuring out the 7.5 milliliters.  A RMDH volunteer went out to the store and bought one for us while we ate leftovers from the meal. She refused to tell me the cost. It took over twenty minutes to get Laelia to take her darn medicine, but once in her I could tell things were going to get better.

When we got back up to our room it was  clear someone had been in our room because I only locked the deadbolt before we left and now the door handle was locked. I walked in to find  a notice that said there  had been an inspection and  I needed to clean up my room.  I felt completely violated. I wanted to crawl into bed, but Laelia had just had her casts removed (which she screamed through) and needed a real bath after  a month. I put her in the tub and she soaked while I cleaned up the room, most of which were things I had thrown out of my suitcase to run out the door. We had to refill the tub and clean out the dead skin four different times. I gently rubbed her legs over the scars and sensitive skin until my back could not lean over that bathtub anymore. Then once she was out I scrubbed the whole tub. We fell into bed around 11:00pm. I couldn’t breathe and my throat was sore. It was official; I was getting sick. My back was also pretty sore. Laelia told me she was sorry I felt bad. This child had just come out of casts and her legs were throbbing, but she was being empathetic. She’s a sweet little soul. She cuddled up with Ariel and tried to sleep for about an hour before I let her watch Snow White instead.

They weren’t able to do all the work on her braces on Monday so now Tuesday they had to have us back in. No problem we’d just stop by before or after our scheduled PT appointment. “What PT appointment?” I was asked.  That’s right, scheduling had forgotten to put us in the schedule. (Mariann was on jury duty we found out later so couldn’t fix it.) Without PT we couldn’t measure and work out the lift for Laelia’s shoe that we needed because of her pronounced leg difference now that her legs were straighter. Plus we couldn’t come back a different day because we  would fly  out the next day! It was a mess. I had to wake up early to call the hospital and then they called me back to come in. When we got in, the front desk/security people didn’t know we had an appointment and it took forty minutes to convince them to let us up. We were late for the appointment. We raced through it. Oh and before any of this on our way from the  parking garage to the main floor of the hospital the elevator started to shake violently. I thought, “Just great. Philly is finally going to kill us.”

During our long wait I started chatting up the front desk lady. I asked  if she had people pointing out the error in the artwork above her head all the time. I guess not!  I notice this like every time! Anyone else? (I had to get Laelia’s crutches out to show her how they work.)

Notice the pediatric crutches?

He’s gripping invisible hand grips. Nothing is holding this boy up!

When we finally saw the doctor that we do all this to see we  talking about his newborn and my adoption and conference and fun things. Finally  he said, “I guess I’ll see you in six months. Or whenever you can work out getting both your  kids  here.” Now if you don’t know  our history, our journey with Laelia started out with every doctor saying there was nothing they could do and finishing up our disappointing visits with, “See you in six months.” I have hated, “See you in six months,” for that very reason. But when  Dr.  van Bosse said that, it was because Laelia was walking and looking great. He said that because he had fixed Laelia’s legs. A few degrees in the knees would be smoothed out as the 8 plates did their job, but she was within ten degrees and looking beautiful! She was  ambulatory!

I refrained from hugging him and sobbing. For the first time in my daughter’s life I was  thrilled to hear, “See you in six months.” (Plus I would not mind avoiding Philadelphia for a while…)

Notice the leg difference and the white lift on her shoe?

Straight legs, feet and hips.

The legs, feet and hips she was born with.

We got  home late last night. I have had  a nose bleed off and on for  the last 24 hours.  I’m also  battling a cold. Laelia wet through her Pull Up and her  pants and onto the plane seat on our second flight yesterday. Without a change of pants I just sat her on papertowels for the flight to Denver. Then it turned out we had no time between flights. We landed at 5:50 and the next flight boarded at 5:30. Really?!!! We got off the plane twenty minutes late for the next! We had to fly home in the same wet pants because of that. Then my husband showed up in a clown car (aka his VW Beetle) because he forgot he would need my car to fit everything. But we did finally fit everything including Laelia’s wheelchair, our luggage and ourselves.  (The VW Beetle is a stupid car.)  A security personel yelled at us for taking so long. Finally we were about to take off and Laelia says in her sing-song voice, “Um, I think you’re forgetting something…” We hadn’t buckled her into her car seat.  We laughed the whole way home.  It’s been a looooooooong three days. Thankfully it was so insane that it was bearable. I think if   just a few of those bad things had happened then I would be livid, but so many things happened that I had to just laugh and  treat it like some divine test. We made it. We survived. And now we gear up for Charley’s surgery. At least his is right down the street. I’m hoping we’re all healthy by then.