Archive for the 'angry' Category

faith healing (because again?! people!)

Friday, May 30th, 2014

Trigger warning: Sarcasm, faith healing, more sarcasm

*ahem*

There’s a reason we don’t pray for someone’s amputated leg to regrow. Even those with the gift of healing usually draw the line there. I have never seen a group of amputees line up outside a faith healing tent and come out with arms and legs. I’ve known three faith healers (family friend, friend of friend, family member) and all three have never even offered to regrow people’s limbs. (Rude!) We humans reason (correctly) that there’s a natural order to things. Could God regrow limbs? Sure. So why don’t we regrow them through faith? Because we are not lizards (yet).

So why do people insist that God can regrow my daughter’s muscles that she literally does not have? Literally! The anterior horn cells in lots of places were disrupted during fetal development and those body parts did. not. form. And (I’m sad I have to even make this point *sigh*) that fact does not change just because you can’t see it!! (Science!)

If I was born without a liver or foot or brain could prayer create one out of thin air for me? Does God bend the laws of physics in that way any other time? (Imagine playing Monopoly and then the creator of Monopoly is all, “Randomly all properties will now be used as tarot cards. Oh you have Park Place? That means you’ll be unlucky in love. But hey you’re winning! How? No clue!”) Because that’s what you’re saying. Just realize that. That right there. You’re saying that!

If you pray, pray normal things. (Talking to unfathomable cosmic creator of all things with your mind = normal!) Okay, like I pray she works hard in physical therapy and that her goals are worked toward with patience and with grace. I pray she learns how to navigate the world with the incredible body she does have! (Because she’s different, not tragic.) I pray for wisdom for us as we make medical decisions on her behalf. I pray for technology to catch up to need. (But I’ve given up on insurance catching up to need a long time ago.) I pray for her to have this light that shines in the dark spots of our culture. I pray she grows up to help the poor and fight injustice. And today I prayed for the poor unaware bully who got her lip! (Note to bullies, don’t call my daughter “bossy.” It somehow gives her cosmic authority to take charge of the correction of your mistake, known to you as “bossing you more.”)

Heck I can’t tell you what to pray, go nuts! Pray she grows wings! Because wings!!!!

Just, I don’t know, please see arthrogryposis logically and don’t get stinking mad at us or God when the laws of physics don’t go topsy turvy at your prayer missives. My kids will do amazing things and “prove doctors wrong” but it will likely happen within the realm of reality and follow the rules of the universe.

PS: My son is also missing muscle, but not as notably so he has received considerably less offers of miraculous healings. Don’t worry, he’s not feeling left out. Unless you start offering my family faith healings *and* cookies. Which is only polite.

PPS: But but but! What about Jesus and the dude’s ear or part of St. Augustine’s leg or stories like that? Most faith traditions have miracles or healings that held some purpose. I think we could *at least* agree these are exceptions to the rule.  And I am referring to modern, has-access-to-Internet faith healers in this post.

PPPS: Chocolate chip cookies with chunks of brownies in them. No store bought crap.

Expecting the unexpected

Friday, March 7th, 2014

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Can life get better?!!! Right after we found out that Raymond had a family, we got word that a donor had dropped several thousand dollars into Aubree’s account! Aubree is another one of “my kids” (orphans with AMC who we advocate for). Aubree now has $15,000 in her account!!!!!! WOW!!!!!!!!!!!!!! And since that money went into her grant I’ve had two moms ask me what would be involved in adopting her and that they were praying about it! Of course they are far from committing, but the financial burden being lessened is really opening up doors for Aubree who has about a year left before she’s ineligible for adoption. Whoever you are, thank you thank you thank you for giving to Aubree!

So many people ask us why we aren’t adopting all these kids we advocate for. Let me just say that if I *could* there are FIVE kids with AMC who I would adopt in a heartbeat (not an arbitrary number, three are in China, two in Ukraine). Our experience adopting our son with AMC has been one of the best things that has ever happened to us. I say all the time that I would adopt ten more Rolands. But in reality it would be closer to 20 or 30. ;) They would absolutely trash my house, but it would be worth it. :) But our lives are heading in a different direction. Several months ago we went to a Resource Parent Orientation. A week later we made the decision to apply to become foster parents. Our focus will be on reunification with birth parents (aka we’re not in this specifically to adopt again). And our social worker will be helping us care for children who will be a good match with our own children and their needs and vulnerabilities.

Three days after returning from Laelia’s last surgery we started foster parent training classes. (And if you read the last blog you know that was not a stress-free time for us.) Hubby’s classes are in the evenings after work and my classes are 6.5 hours long on Saturdays. Except for this Saturday because the kids and I are flying up north to see my cousin Nate!

Nate has done two tours in Iraq, been the subject of the HBO documentary “Shell Shock,” and spent the last several years in prison for holding a gun to a cab driver’s head when he was having a PTSD flashback. (The cab driver was Iranian and part of Nate’s job in Iraq was to do this very thing. He thought he was there.) No one was hurt at all, and they found Nate crying and completely confused at what had happened when he realized he was still here in San Diego. But no treatment was offered and the presence of a gun meant automatic prison time so he took a plea deal. He was just released Sunday. He hasn’t seen Laelia since she was a tiny thing. She hardly remembers him but she’ll see him again tomorrow afternoon. We fly out early in the morning. After doing the cross country trip from hell two weeks ago, this trip will be easy, even if I am going alone with the kids.

And after we get home from this trip we wait three more weeks and have our lives upended yet again.

Here’s the story: Two days before Laelia’s surgery we had an appointment with Dr. van Bosse to see the kids. While in the waiting room (with several other AMC families) we discovered that the upper extremities doctor, Dr. Zlotolow (we call him Dr. Z), was leaving for the day and we had forgotten to actually set up an appointment with him. We needed him to look at Roland’s elbows as we had just finished up the second round of serial casting. Thankfully he agreed to see us before he went home. He vasillated between recommending the surgery and recommending waiting. Roland’s arms look pretty good: one is at 75 degrees and the other around 90. Finally Dr. Z made the decision to keep an eye on Roland’s arms and put off any surgeries. We got a prescription for two elbow splints which work really well. I know we’ve gained ROM (range of motion) on his elbows just from stretches and these wonderful splints alone. Will he have that elbow release surgery in the future? Who knows. So far he hasn’t had a single surgery. Lucky duckie.

But we really didn’t expect the doctor to look twice at Laelia’s arms. Blessed with excellent passive ROM from us stretching her since birth she doesn’t qualify for any of the usual AMC-related arm surgeries. She also lacks the muscle for a muscle transfer. So we were very surprised when he showed us plain as the noses on our faces that she needed arm surgery to assist with feeding herself. In every picture I have of her I’m now noticing how much her arms are rotated. If you try to put your own arms into that position you’ll realize how awkward that feels. Here’s one example in a picture.

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Laelia’s hanging arms are twisted inwards with palms out.

What will fix that is derotational osteotomies (cutting the bones and rotating them). The same thing they did to her legs when she was three, only this time with her arms. If successful it will help her with reaching her mouth and holding a ball. If REALLY successful it will help her to clap her hands together. (Right now she claps the back of her hands together.)

So when is this major surgery happening? April 1st. Not an April Fools joke this time. (Although everyone will probably think so based on my track record.) She will not be able to use her arms for six weeks after that. She will not be able to walk since falling (which happens) would have dire consequences on those healing bones. She will not be able to write, play on the iPad, feed herself, etc. For all practical reasons she’ll be a quadriplegic. She’ll need constant care and supervision. And we thought this last trip to Philly would be the last one we would have for a long time. Boy were we wrong. Two more trips in April alone. Big time recovery. More stress.

Another complication recently has been with our insurance company. They are refusing to cover Laelia’s leg braces. So she STILL doesn’t have them, and it looks unlikely that she will get them before the next surgery where she won’t be able to walk. I can’t tell you how awful it is that she went through a leg surgery and now doesn’t have the needed braces! The old ones don’t fit anymore and they are hurting her. The CA doctor (more accurately his nurse) I sent the prescription to messed up big time. The orthotist tried to get them made and our insurance told them they would not be covered.

Long story short our only recourse if we don’t want Laelia’s legs to atrophy after surgery (where they stressed the importance of PT and correct leg braces for recovery) is to have them made by the same people who were so incompetent when Laelia was a baby that we fired them. And it is taking forever!!!

Laelia has huge “balls” on the bottom of her feet so we could not have her braces made in Philly as they require many many adjustments as the giant sores move and the braces are always needing to be repadded. Laelia’s feet are also starting to reclub. Ugggggggggggggh. Reminds me of this thing I saw on Facebook: “When someone asks you ‘What would Jesus do?’ remember, a valid option is to freak out and turn over tables.” Author unknown.

Yeah, I’m about there emotionally.

 

I’m going to end this post on a happy note: random pictures of my cute kids!

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Laelia’s trying on a wig.

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Laelia seeing her first ever movie in a real theater: Frozen

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He always steals my oven mits. :)

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Roland found and destroyed an entire roll of wrapping paper.

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In-N-Out philosopher

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Swing outside Children’s museum

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Roland hiding from the doctor for his appointment

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Tired Roland is tired.

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Don’t let Roland drive the bus!

 

Our system sucks

Monday, April 1st, 2013

First the good news: Roland has his casts off! Roland can now play his recorder again! It’s his favorite toy and he skillfully manages to conjure the most high-pitched squeaks from its bowls. Did I mention he walks now? So if you ever leave a room because his musical gift has just about shattered the cochlea of your inner ear, you’re in luck! He will follow you around subjecting you to more! (Video.)

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Yes he actually fell asleep with it in his mouth.

Okay the bad news is not that he loves his recorder. :) The bad news is that Thursday (cast removal day) sucked. It was so horrible that I’m just now posting pictures. Many of you know some of the story because you either got a frantic call from my husband that morning or you were one of the people who helped watch Laelia since Thursday was a half day at school before Spring break and mommy was indisposed.

Since Roland is in Early Head Start now and has three hours of preschool twice a week (which he loves) I had a break from both kids Thursday morning. I have been cleaning bathrooms and doing other odd jobs during my kid-free mornings for Raymond, putting a few dollars in his adoption account, but this morning I had some blood work I needed to get done. So I instead spent my morning at the clinic being waited on by vampires. (I’d rather clean a bathroom!) There was also a glucose test I was suppose to do so I had been fasting. They ended up not doing it because I was not feeling well.

Roland’s appointment was after that. I showed up white as a sheet and a little out of it. I had packed a banana, freeze-dried sweet peas and some almonds in my purse so I wouldn’t be light-headed, but I wanted to get us all checked-in first before getting into them. The check in line was longer than usual and Roland was fussier than usual. He gets a little upset when I get him from preschool (he’s having fun) so Mondays and Thursdays he has a little more of a behavior problem, but nothing major. Well nothing major until you add the fact that he recognizes the casting clinic waiting area and knows what’s coming! He was just either fussy, whiny or in full on meltdown mode the whole time.

When we checked in there was a small problem with our insurance, as they said we didn’t have any, which took about 25 minutes to rectify. I paid the co-pay and headed to the other room. Right as I was able to open my snacks we got called into a room. Our regular doctor was out sick so another doctor was waiting for us. He looked 13 years old. Seriously he was a baby. After asking the normal questions (if anyone smoked around the kiddo and if we kept the casts dry) he said he had to get all the x-rays out before he could remove the casts or take more x-rays. He asked me which arm was broken. I informed him the right arm at which point he said, “You didn’t seem to know two weeks ago.”

Teenage doctor and I were about to have words. For one thing I felt like I was old enough to be his mother so I gave him the “mommy tone” you use with small children. For another thing he obviously did not have kids of his own or he would have qualified for a Lifetime special (13 year old dad). He brought up the right arm x-ray from two weeks ago and showed me the small lines in the bone that showed it had been broken. I told him that I already knew about that and I asked for an x-ray before they remove these casts to make sure everything was okay. He seemed to ignore me! So my mother tone got a little stronger. “I. need. you. to. x-ray. my. child.” He nodded and left the room and came back with a social worker lady. Because demanding basic care for my child sent red flags? Baby doctor’s thinking is beyond me. At least there was another woman in the room old enough to be the doctor’s mom to help me order him to give the best care to my son. (I just wanted to get done and eat something!) The social worker was nice, she just kept smiling and introducing herself and asking how I felt. I told her I was fine and just needed to eat something. They didn’t allow eating in the room, but they wanted me to take my son back out into the main waiting area and eat there. (Roland is just crying this whole time and it’s hard to hear much of anything.) I’m sorry but a good mother doesn’t let her son be terrified of casting longer than necessary so I forgot the food entirely and just asked to go to x-ray. They finally said yes and when I stood up to leave I totally lost my vision for a second and had to use the wall to balance myself out.

It’s called blood loss. I also had a vasovagal response to having my blood drawn that morning. The pre-pubescent doctor kept trying to interrupt the social worker (who was nice and asking if I was okay) to show her the x-ray of my son’s broken arm. When he said, “The minor handicapped child suffers from arthrogryposis and also a broken arm…” I finally lost all my patience and yelled that he was an idiot. I think I hurt his ego. Seriously it was like he was Doogie Howser and just trying to prove he was a real doctor.

He called security. Seriously?!!

Now I know the security guy. He sits at the desk before you enter the orthopedic area. Sometimes he buzzes me in without being called so we can play with the toys in there. He even has held the narrow door open while I navigate my double stroller through it. He’s this older, over weight guy. When he walked in I think he recognized me. I said hi and he said hi back awkwardly. The social worker said, “It’s fine, we’re just going out to get a snack.” The doctor then piped up like a wounded toddler, “You need to help her walk out, she’s under some sort of influence.” For one thing, what an infantile thing to say! He knew very well it was because I wasn’t feeling well. I hadn’t mentioned the blood work because it was none of his $%&# business, but I never once did anything to show otherwise. I turned to stare him down because I was not leaving without giving him the worst look imaginable. I told him I would report him. When the security guy put his hand on my arm it scared me because I didn’t really think he’d grab my arm and I hadn’t seen him coming. I jerked my arm out of his grasp.

It was like you would jerk your arm away if you felt something tickle you. It was not wild. I did not swing it. I did not step towards him in any way. I simply jerked my arm away. I was tired, hungry and I had just had blood work done and now it was looking like Roland would be in casts forever. I was going to be late getting Laelia from school too. I swear people are so bent on following the rules and keeping to the letter of the law that they don’t consider the circumstances at all. I walked back out to the larger waiting area and two more security guards were waiting there, a skinny guy and a woman. I recognized the woman because Laelia had said her braids were pretty once and asked me to do her hair that way. These people kindof knew us. They said they wanted to clear up what happened and asked me if I’d been drinking. I explained the blood work (even though I don’t think they can legally asked me about that since it’s medical) and explained that I needed to call my husband. They said I should wait but I realized they were just security people and not real police so I called Charley up and he got Chelsea to get Laelia and drive her to Lauren’s house. I then told Charley about doctor Doogie and asked him to look up ways to make serious complaints about a doctor.

Charley showed up at the hospital to get Roland into the clinic and get his casts finally taken off. I wish there was a way for Doogie to have to pay for the lost wages. While they were in there two police officers showed up to get statements. They said the security guy had said I took a swing at him. Even the social worker said it was a “knee-jerk reaction” because I just hadn’t seen him coming. I got arrested for disorderly conduct. At least I think so since I don’t remember (several days later) them even reading me my rights or anything! Charley was in the casting room so I asked the social worker to get him. I followed them to their car feeling like I weighed 800 pounds. I didn’t get hand-cuffed or anything either. They drove me down the road and I mostly just sat in their office a long time. But then I finally ate something and everything was better! Too bad I had to go to a darn police station to get food!!!

I got my fingerprints taken and at one brief point I sat in an area where I could still see the police office but it was technically behind bars. That’s about as bad a story as I have for being a hardened criminal. Ten minutes behind bars. Charley came to get me and that took forever. At one point an officer offered him a coffee and Charley had a knee-jerk reaction too and punched him in the face.

And that is why we’re both sitting in jail right now.

Happy April Fools.

See, isn’t that story so much more exciting than what really happened? Which was me having a vasovagal reaction, passing out, waking up in an ambulance and being too nauseated and weak to even attend Roland’s cast removal. I thought so.

Grief and pain and brokenness–confessions of a mom

Monday, March 25th, 2013

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If you see the title of this blog post you’ve already guessed something is not right. In fact this has been so hard to talk about that I’ve deleted the whole thing more than once out of fear and shame and then had to re-write it.

So let me start out by showing you happy pictures.

This is my little girl winning three medals for running track at school.

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This is my son and I playing and cuddling.

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And here’s Laelia who now reads sentences!

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All I could do in kindergarten was finger paint rainbows. Only rainbows. She is learning tenses and memorizing lines of plays. Wow.

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And here’s Roland eating his breakfast while running around the house. I sneak fish oil in those fruit and veggie packets he loves. Then we have a vitamin D gummy that he loves and some oatmeal with flax seed that he doesn’t love. His diet is healthier than mine will ever be. Still making up for some nutritional gaps from the almost two years he was an orphan.

I really get a lot of personal satisfaction from being their mom.

Can you tell?

(Yesterday at church our pastor introduced us to a man with ten adopted grandchildren. My husband said, “Oh we couldn’t fit them all in our home!” I piped up with, “YES WE COULD!” and got a hug from the pastor for that comment. ;))

I want more AMCers. It’s no secret. I love having AMCers and one weird reason is that they fit into my “leveling up” video game mentality. Just like you would level up characters in a game, I level up my kids by giving them their stretches, vitamins, doing physical therapy, taking measurable steps towards walking, self-feeding, potty training, etc.  My son started walking after only being home six months! Walking everywhere! I don’t even know how I would parent a typical kid without AMC. It would be boring. After all, I’ve leveled all my video game characters as far as they’ll go, even when it’s not necessary to beat the game. Typical kids wouldn’t even need physical therapy. What would I do with myself?

It’s weird. I know.

But I’m trying to explain why I continued to do my son’s stretches for two+ weeks despite how much he protested. I’m trying to explain what kind of person would be so bent on gaining range of motion daily that she would have no inner voice telling her something was wrong.

I had no idea.

I had no idea Roland had a broken arm.

For weeks.

And I was stretching it daily.

If you’re an AMC mom then that last sentence put an ache in your stomach. We have to stretch our kids. We know they don’t like it. We know it’s best. But we always wonder what this discomfort is doing to their little psyches.

Since the day we adopted him, Roland was both an incredibly strong and an incredibly sensitive child. He was the one who timidly asked for cuddles and also screamed for them. He is the kid who is “always happy” and “so mad” all in the same situation. He is also hard to read. He learned “no” and “ow” pretty early on and has used them both appropriately (“no” he doesn’t want that) and inappropriately (“no” he DOES want that). And he says “ow” when he sees a shadow, someone claps their hands, we go over a speed bump, he hears a cat meow or if he legitimately gets a booboo. Not only does he say “ow” in all those situations, but he also becomes whiny and sniffle-y. Thunk goes the neighbor’s front door. “Ow mama,” sniff sniffly sniff sniff goes the Roland.

Lately it had become a bit worse. To quote myself from a blog post twelve days ago, “Some days I’m only one more ‘No!’ or ‘Ow!’ away from grinding my teeth to nubs.”  But I had no idea when I wrote that how Rolly had been privately dealing with a great deal of physical pain. And how much worse had those “ow”s and “no”s and grimaces gotten in the last weeks? I had attributed it to becoming a typical little boy complete with melt-downs and tantrums. But in lots of ways he wasn’t typical. He wasn’t tough. He was loved, but still breakable–physically and emotionally.

Lately I have had to say “squeeeeeeeze” before hugging him or that big squeezey hug would cause him to yelp. But when he knows it’s coming he enjoys it immensely. I had been frustrated at how gentle he was and how pouty he reacted to me loving him. Man… and I know this isn’t the first time he’s dealt with pain, with adults who don’t know him and don’t get it. The clues to him being in real pain were there, but they were hidden.

And I keep thinking if I just knew him better, if he hadn’t just plopped into my life six months ago, then I would have caught it.

I should have caught it.

Oh God and I stretched that arm.

Worse.

It gets worse.

I started doing feeding practice once his right arm magically started bending enough to reach his mouth.  (Ugh, how long have I been an AMC mom?! Contractures don’t do that magically!) I sat him down with a child-sized red table in front of him and his favorite fish cracker snack on the table. He happily put crackers in his left hand and I corrected him. “No, use your right hand. Lefty doesn’t reach.” And I put them in his right hand. He immediately dropped them and screamed at me. A discouraging start.

“Sorry, Rolly, but you have to learn to feed yourself.” I said patiently even though I was frustrated because before recently he seemed to be right-handed. Now he seemed to be left-handed. Was this kid playing us?

He responded by dropping his head and eating the crackers off the plate like our cat eats from a bowl, hands-free.

“No no no. Use your right hand,” and I put the cracker back in his right hand.

He then handed that cracker to his left hand and tried desperately to get that hand to reach his mouth. His joint contractures in his elbow kept the cracker dangled in front of him like a carrot in front of a horse.

I put it back in his right hand and slowly stretched the hand back to his mouth.

He screamed.

I was used to his screaming. He screamed earlier when I wouldn’t give him something off the store shelf. He screamed when his sister had a toy he wanted. He screamed that morning when I told him we had to change his diaper before breakfast. We joke that Roland only has two volumes: ear-shattering, high-pitched screaming and regular voice. No in between.

He screams. It’s what he does. So I ignored him.

When I brought his right hand to his mouth he would not hold the cracker so it fell. And fell. And fell.

“I know you can hold a cracker. I don’t know why you’re being so stubborn!”

Again and again. Stretching and stretching. Screaming and screaming.

Again and again until I was losing my patience.

“Roland I know you can do this! You can hold this cracker. You can use your right arm. Why won’t you try?!”

“No!” he screamed and spit.

After a while I got so upset that I yelled, “FINE!” and stormed off, slamming a door.

I came back a few minutes later after I’d calmed down to find him face-planted in those crackers, stuffing his face.

That did it.

I picked him up and put him in his crib.

“Time out!” I said to his screams and protests. “And no more crackers!” I dumped them all in the trash, fuming.

When he calmed down from the injustice of it all I asked him, “Are you going to be good now?”

He responded weakly, “Da. Goo ba.” (Yes. Good boy.)

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Oh my heart hurts just remembering this. And I’m so embarrassed and so ashamed to share it. At first I was just terrified anyone would find out. Like child protective services would come take my kids away. I would become the cliched adoptive mom done in by the pressure. How did I miss a broken arm? The telltale bruise on his elbow? His grimacing face and heart-breaking tears every time we started doing his stretches. Which, by the way, was five minutes a day, every day… every damn day!

After the doctor told me it was broken I went into shock. I live four minutes from the hospital so did manage to get us home before I threw up and balled my eyes out. The next day I didn’t want to get out of bed. Roland turned on his music box in his crib (the only clue he’s awake) and part of me didn’t want to get him knowing I would see that cast and be punched in the face with that guilt and grief.

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The arrow on the right shows the fracture. The arrow in the middle shows a possible second one. And the circled area and beyond is where the bone was growing out funny because of continued trauma (aka stretching).

The whole reason we even got x-rays of his arms is because I thought his LEFT arm was bothering him. I had even discontinued stretching his LEFT arm because it seemed to cause him trouble. The doctor must have thought I was nuts when I was there for his left arm and his right was broken.

The AMC in his arm (the joint contratures in his elbow) had protected him since it left his arm stiff like someone in a splint. It also hid the break as he happily went through life the same as always. His “orphan training” taught him not to cry. So yes we missed it. But everyone did.

Ugggggggggh.

But I was suppose to be his safe place.

I was suppose to save him from pain.

Oh sweet buddy, you were hurting. How did mommy not notice?

They ended up casting both his arms because, as one family member put it, only I could freak out enough to get the other arm in a preventative cast. There was no way I was ever doing another stretch ever again at that point, and the poor doctor wanted to go home, so Roland got two casts–one for the broken arm and one to stretch the other arm.

It’s broken. Broken. Every time someone has commented on Roland’s casts I’ve always been able to say, “Nothing’s broken. He’s fine. We do this for his joint condition. It’s like braces on your teeth.” I’ve repeated that line so many times it’s part of going out in public. But the first time someone asked me this after the break discovery I about cried. She quickly said, “It happens to everyone. Don’t worry, Mom!”

Before this I would roll my eyes that someone would assume my kids were broken, that I neglected them enough for them to get hurt. Both my kids even have t-shirts that say “Sky diving accident” on them because so many people ask us how “it” happened and serial casting is just not in the public consciousness.

But now I’m the mom who has a kid with the broken arm. And I’ll never judge anyone else again.

So what caused the break in the first place? They guessed bad nutrition–the same explanation they gave me for his day of hypoglycemia in the hospital which has not been a problem since–caused by two years of poverty coupled with stretching him too aggressively. I do around 80% of the stretching. What if I broke his arm? The thought has paralyzed me. It’s paralyzed my parenting. It’s made me feel like an abuser. A failure. How many years have I been stretching AMC limbs? How many times had I given a tutorial to new parents worried they were doing it wrong? The doctor asked if I was holding his arm down low at the elbow or up at the wrist? I instantly knew what he was going to say. I knew better. You see Roland struggles against stretching as any two year old would. And he has enough muscle in his arms to yank them out of a good stretch. So I was holding his arm too high in order to get him still enough to stretch him and a little thing called leverage is why you don’t do that. My daughter is missing a lot more muscle in her arms and never fought against the stretches like Roland does so I never held her too high. I always had the perfect position with her. But with my son I held it too high. It was too much pressure. I hurt him. And I’m so sorry.

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“Do you feel if you can’t do something to perfection, you ought not bother? Do you frequently feel pressure to perform tasks that will result in applause? When you blow it, do you wait a long time before trying again?”

That’s what Beth Moore asked me last week. Or at least it’s what she wrote to her readers in a book anyway. I’m reading her book about an orphaned girl named Hadassah who rescued thousands of people from death and was the hero of Persia around 480 B.C. She didn’t do it perfectly. In fact she seemed to hesitate more than once. And she was afraid. We know her by her Persian name, Esther. When I lived in Israel we celebrated her story during Purim. And it didn’t matter how she did it, she saved lots of people. She did what she needed to do. Even saying, “If I perish, I perish.”

Yes I feel like I need to do parenting perfectly or it doesn’t count and God isn’t honored. Or if not “perfectly” at least almost perfectly with tiny little mistakes where I don’t cause great pain and suffering to my children. (My children should all suffer from the horrible haircuts I give them! Nothing else!) But my track record includes having two unnecessary surgeries on my daughter before we found her doctor in Philadelphia and breaking my son’s arm. And it’s darn scary to keep trying when I’m constantly reminded about my failure.

I never liked the story of Esther because it was so “human.” Other Bible stories are so supernatural. God takes the reigns and saves the day. Moses parts a sea and it’s a powerful sight! Joshua fights a battle and wins. Deborah defeats an army and songs are sung about her leadership. These people are larger than life! But Esther was a glorified orphaned hooker, shaking and trembling and hesitating, yet she did was she needed to do.

And although it doesn’t say this, I bet she had small children too. She had been married for five years in a culture that valued offspring. And no pill. I wonder how that affected her decisions and made her hesitate. For a character I never liked, I now respect her, the mess she was.

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Roland seems fine, but I have just cried and cried over him, holding him close and rocking him gently. Now when I hear “ow” (like just now when his stuffed animal fell off his walker) I just lean down and say, “Oh sweet boy are you okay? Did your stuffie get an owie? Poor stuffie. Have some cuddles.”

Roland is still bonded to me. I didn’t scar him for life. He still looks to me for comfort despite my failings. He still takes my hand and puts it on his tummy when he wants “ticky ticky” (tickles). He still enjoys peek-a-boo with mom. He still demands “up” and gets held and kissed. I’m not perfect and nothing about adoption is pretty or perfect. I’m not overly good or overly bad. If every orphan waited for perfection in order to be rescued then no one would be rescued. If every mom waited for perfection before adopting then every orphan would remain an orphan.

It’s okay to just do your best. I’m an okay mom doing an okay job. Some days I rock this job. Other days I don’t. Behind every great kid is a mom who thinks she’s doing everything wrong… or so I read on Pinterest.

And I want to thank the many, many people who wrote me during this time and told me about their whiny kids who days or weeks later turned out to have a broken bone! I appreciated it greatly! (I’m sorry it happened to your loved one, but I’m so glad I’m not alone!) And thank you especially to the AMC mom (you know who you are) who told me about breaking her son’s arm during stretching! Maybe this is more common than we think! It’s a club we never wanted to be in, but I’m glad to have company who understands.

So I am getting back up, picking up my kids and holding them close. I’m rejecting the lie that my son was better off where he was. I’m rejecting the lie that I’ve ruined my kids for life by making mistakes. And I stand by my claim that having AMCers is the best. They are bright, able, loving and precious. They make the game of life worth living. They deserve a mom who is trying, and one who doesn’t give up and doesn’t stop learning and changing to be what they need. I’m going to shed this shame and the fear of people knowing I’m not a great mom and just do better.

The easy life

Wednesday, March 13th, 2013

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I wanted to write a little about how we’re doing considering it’s been six months since we brought our newest little home. I’d describe our adoption as “easy,” not that it was always that way, but because on the grand scale of things we have been incredibly blessed, and that has nothing to do with us. We weren’t especially prepared and we weren’t especially good at patience or parenting tricks. Regardless Roland has fit in really well, bonded incredibly fast and we all love each other. And thanks to our wonderful family and friends we were able to provide him not only a home, but a loving community.

I have incredible respect for those families who choose love during the hard times. I sometimes think I have this so easy because God knows I suck at being a loving mother during a screaming fit. And even though it’s been easy (much easier than we expected) it hasn’t always been roses. I’ve struggled with anger during the last six months. You’d think communication difficulties would just be hard on the little one, but I found myself getting angry! “What in the world do you want?!” has come out of my mouth more than once. And I have felt deeply the irony of yelling, “Stop yelling!” And some days I’m only one more “No!” or “Ow!” away from grinding my teeth to nubs. Oh and have I mentioned that my cute little man still has the well-earned nick name Mr. Screamers? I feel like my major accomplishment in this adoption has been to show the world that ANYONE can adopt.

And even though Roland has had some trauma in his past, most of what we’re dealing with is just two year old boy. I think my biggest parenting handicap is the fact that Laelia was so easy on me!

But really even when we were loving a picture of a boy and imagining what he would be like, I didn’t really think I could have as much love for him as I do. I mean Laelia is my world. She’s my life. Come on, she’s Laelia! So how after six months do I have as much love for my Roland as I do for my Laelia? He’s not flesh of my flesh. I didn’t have his newborn face to memorize or breastfeeding to bond us, but I love him as much as my daughter. How? I don’t know. It’s true that love doesn’t divide, it multiples. But I didn’t expect it on this scale.

Sometimes holding my little cuddly boy is healing. Just goodness.

We adopt because we were adopted. We love because we are loved. We give because it’s all been given to us. Our entire family is one collective response to a divine Initiator.

People say all the time now much Roland looks like us. And I know that’s true, but when I look at him I notice every single Ukrainian feature. I’m drawn to those differences like anyone is drawn to notice the differences in things. The things that look nothing like us are just as beautiful as the things that look like us. His eyes are the same color as his sister’s. His skin has the same paleness as both parents. But that Russian nose and dark eyelashes are on a completely different genetic canvas and they are beautiful.

So I know I haven’t found the time to write endlessly about our days, regretfully, but know that we are imperfect people who are enjoying life and learning as we go. And things have been good.

Really good.

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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!!!

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.

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*

The kid is alright

Saturday, November 12th, 2011

All this  last week I have been adjusting to my new role of housewife, super PTA mom and work-from-home  employee. I’ve been failing miserably! Thus no blogging this week. And before this blog post turns into a whine fest about how much I miss my normal job and boohoo I have to do dishes now, I’ll start talking about Laelia.  :) People  have been  asking about  the kid  to see if she’s doing okay after surgery. She’s doing so well I forget she had surgery last week. This was what she was like right after surgery.

Last  Saturday she was begging to do some weight bearing on her knees. Since physical therapy for the first week is Laelia-directed, I let her do it.  I was still a little  afraid I’d break her, but she was harder on herself than I would have been. With a little   help from Dora the Explorer, Lali logged  over an hour of weight bearing! She’s very independent and nothing will hold her back.

I cringed thinking of her sore hips, but she wanted to hear daddy’s story while holding her toes.

Laelia’s school: Last  Monday  I had a school meeting to determine if Laelia could go back to school. It was going to be with a nurse or health person of some kind. Anyway when we landed in San Diego and I  listened to my messages I had  missed two calls from the school saying that the health person was not available for another week! I thought, “Oh no! No school for a week and me with a new job on Monday!” Well thankfully Sunday night our SEEC (Special Education… something something) coordinator, Sue,  called and after I explained that the surgery went really well and was even technically “an outpatient procedure”  (Laelia didn’t stay at the hospital overnight… and she didn’t really need to stay very long at all) then  Sue suggested I email the school to tell them since I couldn’t call on a Sunday night.  So I emailed the director and hoped for the best. I worried about it all  that night despite trying not to think about it.  The next morning I showed up for school and once people saw Laelia and that she wasn’t in pain or in casts, and she didn’t need any medication of any kind, they let her stay at school that day! When the director said, “Okay sign her in,” my brain didn’t register the words and I was all, “Sign her in for what?”  :) Before  I had been told  she would  definitely  not be allowed  to go back to  school on Monday, but since she was fine they let her! They are saving our big meeting with the health person for after her bigger surgery this spring.

Laelia’s bus: Tuesday morning after the bus didn’t show up I fought with the  bus people  over the phone for 40 minutes. A weird thing happened–they  put me on hold at one point  but without actually putting me on hold. That meant I could hear them dealing with another parent who was very upset. I also could hear them dealing with her in the way they deal with me: with the tough talk, “I’m sorry ma’am, next time call at least two weeks ahead of time… uh huh… well then you should have stood in a more visible spot… uh huh… well it’s our procedure to…” and so forth. When they hung up with that parent I heard them say something like, “Well she’s right. We didn’t do our job and now her job is in jeopardy. I feel for her.” Then they got back on the phone with me!!! And at this point everyone just seemed more human, and I felt more confident in what to say. Long story short, a bus came that morning (very late) for my daughter, and after that her regular bus drivers (whom I adore) have showed up every morning and afternoon since!

Mommy works from home: The great thing about this shift in my job is that I’m able to attend every school meeting. Like Thursday night I went to a Community Advisory Committee  meeting for parents and staff who support  students with disabilities. It was boring as heck, but I ended up meeting people. In fact  I met someone who would be able to assist me when  we return back to school after Laelia’s next surgery!  My goal is to go to EVERY school meeting in any way related to my daughter’s needs or education from now on. It’s really confusing, but I’m learning stuff! Like there’s something called SELPA and it stands for “Special Education… El… Pa.”

One of the perks of working  from home is that I no longer panic when Laelia gets kicked out of school. Like for example  we were told  Thursday that there was no school on Friday for  Veteran’s Day. (We had missed the reminders since we were in Philly.) In my former life that would have meant some mad scrambling and most likely a day of Laelia and Chelsea bonding while Mommy went to work. This time it meant working from home while my daughter was home! That was exciting for all of three minutes. I was looking forward to this new dynamic of working while parenting. I now know this is impossible. Utterly, miserably impossible. I’m never trying it again. It doesn’t work. No good. Nope.

Next time I will parent during the day, and then start work at 3:00 a.m.  when work  can actually get done.

Laelia’s shots: So Laelia was driving me crazy-go-nuts on Friday since I was trying to work from home at my computer while answering her incessant calls every five seconds followed by the whining and crying of an only  child who is being  ignored. Laelia had a doctor’s visit that day, the school reminded me, because even though our lives are surrounded with doctors, they don’t count! Without a physical from a local doctor Laelia would not be allowed to return to school. In the waiting room a nice couple holding a newborn picked my brain about pediatricians while they offered my little angel a mini Hershey bar. She ate half before her name was called.  After her name was called (Lala or Layla or Layloni, they were close) evil Mommy took. her. candy.  *gasp* Mommy mentioned something  dastardly about “eating it later.” This led to screaming the likes of which has never before been heard. Her first two attempts at the eardrum-piercing scream were too breathy, but the third attempt nailed it. She  had people on the other side of the office poking their heads out from behind their paperwork to stare. Telling her that because she screamed she was now getting no more chocolate did not help matters. Threatening her with a time out got the response of, “You can’t give me a timeout, there’s no timeout place here.” Wow. Let’s just say it takes a lot to make me laugh hysterically in public, but I did. Then I said in a sing-song voice to my precious little daughter who I was not strangling (so, WINNING), I said,  “I hope you get lots and lots of shots today!”

Okay the truth was that I honestly did not know she was getting any shots that day. I never would have  said that if I had known she was getting shots that day.  I thought she was just in for a physical where they checked her tummy and stuff. But she was also in for four shots. Four.  And when the nurse told me this in response to my sing-song statement, well that sobered me up real quick. I immediately said, “Oh honey you are getting shots today, but I didn’t know! It’s not because you didn’t behave correctly. Shots are good for you and they make you healthy. They are not a punishment.”

Nothing I said mattered. For the next half hour everyone within the building heard the loud wales of, “Iiiiiiiiiiiii Doooooooooon’t Liiiiiiiiiiiiiiiiiike Shots! Nooooooooooooooooooooooo! I doooooooooooon’t waaaaaaaaaaaaaaant!!!!!!!!! Waaaaaaaaaaaaaaaaaaaaaaah!!!” I told her that if I could I would take one for her. She got hopeful and said between sobs, “I wish you  could take all  my shots!” Stinker.

After the pokes they gave her a treasure box toy for being so… um, loud? She happily strolled out of the office cheerfully playing with her tiny plastic camera. I didn’t strangle her once.  Where’s my parenting trophy?

More parenting stuff: In other news, I’m starting to regret telling my daughter about the time I found a horse outside. He had escaped from the fair and was wandering the Carl’s Jr parking lot all done up like a faerie tale. It was probably the most exciting thing that ever happened to little kid me. I ran up to him and held his reins. I had no idea what to do next, but was grinning my head off. My sister had to tell my mom that I had a horse when she showed up. Her facial expression was priceless. It was a great memory. I told  Lali about my horse during our bedtime story. (A quick aside about our bedtime stories, in the beginning it was all  Bible stories and great works of literature. It didn’t take long to devolve into Disney princesses. Now I’ve started telling her  stories about my childhood and how her daddy and I met and married. I lost my mom when I was nineteen and I regret not knowing more about her precious memories. So now I make an effort to share mine.)

But now  I’m constantly hearing in my daughter’s overly excited voice, “The next time you see a horse outside get me!” Then her tone drops to a  serious one. “I want to ride him. I will ride on him. On the horse.”

:)

Tonight I taught Laelia how to play Uno. We take out the wild cards for now, but leave in all the other ones. She beat me three out of three games! I only helped her the first game! She’s really good at this even though the box says ages 7 and up. Because of the arthrogryposis in her hands we hold something (in this case the Candyland game box) between us  so she can lay her cards out without having to hold them. And that way I can’t see her cards. Well not that I’d need to since every time she  has a turn she starts out by  announcing every card she has.  (It makes the game take ten billion years to finish. “Oh that’s a green seven. That means I need a green card or a  seven card.  This card in my pile is red and it’s a six. This card is blue and it’s a zero. This card…”) The discard pile and deck are to the right of the Candyland lid so we can both see them  and get to them. It works really well!  Well until she has to reach over to grab a card. Then I catch her starting to poke her little nose over the lid to see my cards.  She says, “I’m just counting them!” Or, “I’m just seeing if you have a four!” So, you know, it’s totally justified. :) Still I don’t know how she’s beating me. I’m not letting her win! Maybe I need to start enforcing the rule where you have to  say “Uno” when you have one card left. Instead she does a little dance and sings, “I have one card left! I have one card left! I’m gonna wiiiiiiiiiiiiiiiiin. You’re gonna loooooooooooooooooose.”

I respectfully reply, “You mean ‘Uno’ dear.”