Archive for the 'coping' Category

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!

 

Hard times are rare, but unusually hard

Thursday, February 27th, 2014

 

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So I never blog anymore. Mostly because I’m living more adventures than I have time to write out.

The last two weeks have been nutso. But even though I started this blog to write out my hard times and get perspective, I’m writing today with great news!

Raymond has a family! A family! A family! Raymond has a family! Tra la la la la!

Raymond is this guy, an orphan on Reece’s Rainbow, and I’ve been advocating for him for about three years. He was the focus of Bring Hope, a blog I co-author. He was the focus of Grafted Branch, a .org my husband and I run. He’s been the focus of many blogs of mine. He has also had a spot on the sidebar of this blog for many years. He’s there now. :)

One of my friends wrote to tell me that she and her husband were interested in adopting Raymond out of that orphanage he’s in, but a lot of logistics were in the way. I thought they would be the perfect family for him, but I’ve had people interested in my other kids I advocate for and the majority of the time it doesn’t work out for various reasons. But they worked out their logistics and committed to Raymond! (Stacy you are the best mom ever! So excited for you!)

And that has nothing to do with me, but it changed the direction I was heading in. I had stopped praying several months back. I’d send up an occasional weak prayer, but it was empty. So hard to pray when you know that little boy is wasting away month after month with no end in sight and we can’t adopt him right now. I had felt this complete disconnect. And Raymond’s circumstances had a lot to do with that. The morning I received the news from several friends (who get up before I do) that Raymond had a family was the first day I was able to pray again. I was praying and crying as I emailed Stacy to ask if it was her (it was). I just gushed out my thankfulness to God for this one little life soon to be saved.

Life has been hard the last weeks for our family. Unusually so.

Laelia had her 8 plate removal surgery on February 12th. This was suppose to be a). an easy surgery and b). her last big surgery for a while. Neither would end up being true. The whole family flew to Philly since Roland also had his appointment. (He’s looking at 8 plate and external fixator surgery about a year and a half from now.) During Laelia’s surgery while we were playing with Roland on the 6th floor I got a call that they couldn’t bend Laelia’s legs once the plates were removed. That wasn’t good. So they wanted permission to put a pain block in and do a more aggressive surgery. I ran to the 3rd floor to sign the paperwork. They did several releases in her thighs to get those knees bent. It wasn’t that successful and it made recovery a bit harder. When she woke up she had troubles breathing which is rare for her. I spent the whole day bent over her until my back was sore. That night my huband stayed the night and I took Roland back to the Ronald McDonald House where we finally (after being turned away to a hotel initially) got to stay.

Then a blizzard hit.

Public transportation was down, roads were closed… It was one of the most stressful things I’ve ever gone through–being five minutes down the road from my post-op baby and no way to physically get to her. Finally, after taking great pity on me, the staff at RMDH got James, their shuttle driver, to make a trip once it was safe. It turned out a family at the hospital were desperate to get back and I was desperate to get there so he’d make that one trip. Then we’d be stuck at the hospital indefinitely. Well long story short, the family desperate to get back was my family, Charles and Laelia. The hospital worked out an early discharge and they were on their way. (If they hadn’t figured out we were the same family it would have been terrible to have swapped positions but still be separated!) Laelia was sore and cold but once she was back in my arms she was going to be okay. Another storm was coming, but we could beat it and fly out before it hit. So that was the plan but the night before our flight home she threw up all that night. Then she threw up 12 times on our planes home. We thought it was from the anesthesia, but it turned out to be a virus that had broken out in the hospital. So after two days with no sleep and a cross-country experience I’ll never forget we got a ride home (thanks Debra!) and then got in our car and drove straight to the ER. Laelia threw up violently in the ER parking garage. But they put her on some meds and that was the last time she got that sick.

Until my husband started throwing up.

And then I got a really bad cold and I couldn’t breath, but throwing up trumps a bad cold so I was still the single parent and taking care of my husband.  But my cold was awful and the sinus headaches kept me from sleeping. When Laelia was done throwing up she had lots of complains about potty time. Turns out she had a bladder infection, which involved another doctor and another medication in the middle of everything. So she’s been sleeping with a towel under her at night because the bladder infection makes her feel like she has to go all the time.

So I was putting that darn towel under my daughter and stupid me decided to just pick her up and move her onto it… while bent over her… while twisted a funny way. I blame the complete lack of sleep for my idiotic move there. She weighs like 50 pounds of dead weight by the way. Yeah I completely threw out my back… which not only kept me up all night in pain, but required two out-of-pocket trips to the chiropractor and put me out of commission for things like dishes, doing the kids’ stretches, walking, bending over, etc. That put a lot of strain on my husband for several days. And just when my back felt better I got another different cold, this one with mucus. Seriously.

So that’s where we’ve been. In Stressville. So why am I smiling like a crazy person and jumping (awkwardly because of my back) for joy? Because Raymond has a family coming for him. I have a major headache while my son is shaking a bottle of Tylenol right by my head like a maraca. And Raymond has a family. I’m coughing so hard I accidentally peed. But Raymond has a family. I leaned over to grab a toy off the ground and was not able to stand up again. Well, Raymond has a family. I haven’t slept in weeks. But Raymond will soon have a safe place to sleep under the roof of his family. My hair looks like this.

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But Raymond has a family. ;)

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Raymond

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Flying to Philly

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Laelia and Roland at the RMDH

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Roland’s friend Luke at RMDH (whom Roland calls “Mylukey”)

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The Please Touch museum in Philly

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Motorcycle at the museum

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Bakery at museum

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Hospital at museum where Laelia had the most correct medical knowledge and vocab of any of the kids there.

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Waking up after not much sleep (it was 3am our time) for Laelia’s early morning surgery.

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Waiting for surgery

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Roland waiting for surgery… in the toy room :)

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Going into surgery

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Laelia waking up from surgery looking like she has princess hair. My daughter is magic.

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Snow plows excited my son like nothing else.

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Snowpocalypse!

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Back at the RMDH after surgery

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Mean mommy made Laelia do the required homework.

The next day was Valentine’s Day. These are the cards I got:
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Yeah, Roland wrote his to the bus. :-/

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While we were snowed in Roland and I took down the snow decorations and put up Valentine’s day ones.

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We hated snow at this point. Trash it, Son!

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Laelia standing that night without braces! (Later that night she started to throw up.)

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Flying home while sick was hell.

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Laelia at the ER here in San Diego. She’s still wearing her flight wings.

 

New diagnosis

Friday, August 2nd, 2013

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my hubby and my baby

I haven’t wanted to sit down and open up on the blog lately. I have my fingers in too many pies, and a lot of my work is done online so when I have a minute to myself I don’t exactly want to bang out more copy at a computer. I’ll just make this brief, or as brief as I’m capable of. Last Friday Roland had a great day. He went to preschool. He wrestled with his sister. He got into the tickle fight to end all tickle fights that ended with all of us on the ground gasping for air. He threw some blocks and crashed his walker into everything. He grinned and laughed and spun in circles. Then it was dinner time. And he didn’t want any. Then he threw up. He’s thrown up before without incidence so we waited it out with a cup of apple juice. But he threw up everything that touched his lips until he cried. I put some glucose gel into his mouth and rubbed it into his gums when he wouldn’t swallow it, but it was too late. An hour after the first gag he was seizing. And we ran out the door to the ER.

We were in the hospital from Friday night until Sunday night. It’s thrown off our whole week. (Sorry for the 200 emails I’m ignoring and the two orphan care blogs for Aug 1st that posted on Aug 2nd.) The ER is only three and a half minutes down the road and he was rushed in and given some glucose after they recorded his blood sugar at a 14. (The lowest it should have been was in the high 70s!) The doctor said this level was low enough to cause brain damage and wondered aloud why the hell our insurance had not covered the life-saving glucagon gun the last time he did this?!

[For our new readers, about 8 months ago at the tail end of December Rolly had a similar seizure fit and a ridiculous blood sugar score of 19. I blogged about it here. The doctors guessed since it was an isolated incident and probably wouldn’t repeat after he was getting good nutrition. We chalked it up to a lack of “reserves” from poor nutrition and orphanage life in general. Our insurance even refused to cover the glucagon gun making it almost $500 out of pocket and outside our budget. So we watched him like a hawk for three months and then shrugged it off.]

Now that he’s had his second episode, despite excellent nutrition for almost a year, it’s clear our son has an unknown metabolic disorder and a temporary (until we can figure out more) diagnosis of “seizures due to low blood sugar.” It’s like he’s hypoglycemic, but just sometimes. And both times his crashing has had a clear progression of lack of appetite, fasting, lethargy, vomiting and then, after lots of vomiting, seizures. And even though this process takes a couple hours, that’s still really fast! Thankfully after this second life-threatening episode our insurance finally covered (in full) the glucogon gun. Two of them actually. And a new monitor.

Rady Children’s hospital is excellent when it comes to parent training. We were re-trained on our glucose monitor that has been doing nothing but collecting dust for eight months. And I used the glucogon gun on my son to test if it worked while he was still in the hospital. It worked great, but dang. The needle is the size of the inkwell in a pen… just really big. Roland was pretty mad at me after that.

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yeah I hadn’t given him the shot yet

Then I took his blood every 15 minutes after that for an hour. Yeah. *Me.* The girl who passes out watching other people give blood and has passed out twice from giving blood herself was taught to take blood and test the sugar content. And I can do needles now. I didn’t even pass out a little bit!

I even practiced shooting Mr. Bear full of insulin. Roland looked so protective of Mr. Bear after that.

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(check out the countries represented)

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Laelia cried the whole first night, refused to sleep without Roland there (they share a room) and said in a pathetic voice, “He’s gotta be okay. He’s my best brother in the world.”

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Best brother got an IV in each arm. One to take blood and one to give sugar.

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Then best brother tried to pull out both IVs like a million times until they were forced to put arm immobilizers on him.

So we’re home now. We’re doing okay. Roland is his old self again. We’re just all in a daze figuring out our new normal.

And we have appreciated all your prayers so much. And those of you who just wrote to ask how we were doing and say you were thinking of us, and those who offered meals or help, or those who visited… it just meant the world. It was very sustaining and I know I never thank people enough in the moment. I just suck every last drop of love or energy or help they’re offering and then a week later when our heads are above water I stop and think, “Wow that was amazing and they meant so much to us. I hope they know that!” So thank you! You’re appreciated. I hope you know that.

Alright I’m tired and the kids need a bedtime story so I’ll wrap this up.

Right now our three biggest issues are:

1). Getting an appointment with the metabolic doctor. I’ve called and finally I was told a WEEK after our hospitalization that the doctors would “talk about it” and give me a call “in a week.” I verified they actually meant I had to just wait around for 7 days and couldn’t make an appointment in the meantime. Yes that’s exactly what they meant. But, hey, maybe they can get us in next month! Yay? :-/

2). We’re new to this and right now we’re constantly worrying about what he’s eating, how much he’s eating and how often he’s eating. It’s stressful. Like right now he won’t eat dinner and that won’t fly these days! And peanut butter on whole grain bread is served for like every meal. So eventually we’ll figure this out, but right now it’s stressful.

And 3). Roland’s new diagnosis disqualifies him for Head Start. (Where he would go next year for preschool after aging out of Early Head Start.) We were counting on that. And I doubt anyone else will take him either.

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When Hollywood does good

Thursday, June 20th, 2013

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James Gandolfini (picture taken from Getty images)

I know this blog is about my kids and their amazing lives, so it may seem strange that I feel compelled to write a brief memorial to James Gandolfini. But little do people realize the connection between this man and rescuing our son from a third world orphanage.

This is just a (long) story of someone doing something good in life, and that goodness, like a waterfall, trickling down and touching others who will never meet him. We just learned yesterday of Mr. Gandolfini’s death by heart attack at the age of 51 while on vacation. It was emotional to read. My son never met Mr. Gandolfini and neither have I, but our family, and extended family, owe him.

Mr. Gandolfini did something good with his talent and position that indirectly helped us adopt our son: He produced a documentary called War Torn: 1861-2010 which featured my cousin Nathan.

When filling out applications for home studies–the first step in the adoption process–social workers mail you a bunch of application forms to fill out (and charge you a lot for doing so) and then consider to take on your home study based on the answers. One question is if anyone in your family has a felony. Yes, my cousin Nathan. Are they in prison? Yes.

And from what I’ve read and learned elsewhere this is where our adoption process may have ended. Anyone just paying attention to the cold hard facts would know that a close family member, someone I grew up with, from a side of the family I’m close with, is in prison for a violent crime.

So I was angry. Angry at my cousin, our system, our military and my own neighborhood for giving out free drinks to the returning hero that night. My impaired cousin, suffering from PTSD after two tours in Iraq, started bossing around, then put a firearm to, an Iranian cab driver here in San Diego. You see Nate had starting having a bad alcohol-induced flashback where he thought he was in Iraq, and sad as it is, this was part of his job in Iraq, to detain suspicious drivers. The Iranian cab driver (the only description I know him as) did not get why this guy was ordering him around and did not know what was going on. It’s like two different movies were playing at the same time: One where an innocent man was being threatened by a crazy person (the true story), and the other where a soldier put in charge of detaining suspected bomb carriers (my cousin had driven over a bomb once, had three friends killed in action and this threat was real to him) had to pull a firearm on a suspicious man (my cousin’s head’s story). The cab driver acted appropriately, called the cops and, although it was terribly scary, no one was hurt. Nathan was taken into custody crying and confused.

And Nathan got six years in prison (a plea bargain) after being threatened with 15. (But he’s due to be released early. We’ve been told March 2014.) No look into his history. No care of his medical condition or time in Iraq. No consideration for it being a first offense. No treatment plan. Nothing. Just a DA up for re-election, a situation with a firearm (which adds 10 years to any sentence here in CA) and an open and shut case. (At the time there was no Veterans Court in San Diego, but I’ve been told there is now.)

A camera crew (sent out by Mr. Gandolfini) showed up to film Nathan after he was sentenced, but before he was scheduled to show up for prison. They were doing a documentary on “Shell Shock” which we now know as PTSD. While us Wesleys were cut from the documentary, my cousin Charilyn, Nathan, Josh and my aunt Charlotte all got to share Nathan’s story. And we got to know our cameraman, Matthew O’Neill, who we forgot was even filming because he was just so personable. (And he let my daughter play with his really really really expensive camera because it made her giggle. We liked him.)

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Laelia (on the drive home): “Where Nate?” Me: “He had to go bye-bye.” Lali: “Bye-bye Nate.”

Two minutes later. “Where Nate?” (She thinks about it.) “Nate bye-bye.” (Feb 26th, 2010)

And that’s why the social worker asked, “You have a cousin in prison, but he’s featured in an HBO show? I think I saw that. Can you explain what happened?” They learned that the violent crime was just because of the presence of a firearm and not because anyone was hurt. They learned it was a very specific set of events that are not likely repeatable. They learned about Nate, the real person, not the criminal justice statistic. And my family (and extended family) after background checks and questions and lots of fact-checking were approved as a suitable and wonderful family for an orphaned child. Our son came home eight months later.

James Gandolfini did a documentary on PTSD that shook up the way we treat and view people suffering from it.

And that had a trickle down effect.

This film was shown to military personnel where they discussed it at length.

Things started changing.

Nathan’s mom became an advocate for returning soldiers and their families working through Blue Star Moms which began here in California.

Soldiers who were once told, “Don’t say you have any nightmares or any problems, or you’ll be delayed even further [from getting home],” and came away with the belief that “If the Marine Corps wanted me to have PTSD, it would have issued it to me in boot camp,” are now getting the resources, education and support they need. Or at least it’s getting better all the time.

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I’m cuddling my son this morning. He has a yogurt mouth, a pencil in one hand and is singing two letters of the alphabet very loudly (making cleaning the yogurt off his mouth nearly impossible). It’s scary to think that not too long ago we may have been unfit to adopt because of the ignorance surrounding PTSD. And I’m left here thinking of the hundreds of people, from financial supporters, encouraging/praying friends, government officials, USCIS personnel, Reece’s Rainbow staff and a million notaries who helped bring our son home. And in that list, strangely, is one Hollywood actor turned producer.

In memorial of Mr. Gandolfini. You never know how one good thing can really make a difference.

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AN UPDATE: I want to say that this is a very messy story. It’s not clear-cut, clean or nice. There are no “good guys” or “bad guys” but a lot of human people, even human court people. The law is set up as black and white and as unfair as it sounds to us, there is a real victim who got a bad scare that night and it probably left him shaken for a while. Choosing to drink to excess, whether to drown out a condition as bad as PTSD or for any other reason, is wrong. I hope there’s nothing political about this story. It’s just a true story about a good thing Mr. Gandolfini did to help soldiers and their families, which also helped us adopt our son.

Rachel weeping

Tuesday, April 9th, 2013

“Thus says the LORD, ‘A voice is heard in Ramah, Lamentation and bitter weeping. Rachel is weeping for her children; She refuses to be comforted for her children, Because they are no more.’” Jeremiah 31:15 (600 BC)

“Herod [...] became enraged, and sent and slew all the male children who were in Bethlehem and all its vicinity, from two years old and under. [...] Then what had been spoken through Jeremiah the prophet was fulfilled: ‘A voice was heard in Ramah, weeping and great mourning, Rachel weeping for her children; And she refused to be comforted, Because they were no more.’” Matthew 2:16-18 (Six hundred years later.)

“[On] December 28th, [Putin] signed a law that bans Russian orphans from being adopted by American families, depriving some of his most vulnerable citizens of their chance for a better life. The fact that Mr Putin signed it on the day marked by many Christian churches as the Massacre of the Innocents was a coincidence, but it added to the dark symbolism of the law, which has promptly been dubbed as ‘Herod’s law.’”  The Economist/Moscow News (Two thousand years later.)

“Our Rachel isn’t the one of Ramah in Israel, she’s every mother who watches a baby die in Eastern Europe.” Anonymous

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Elizaveta has AMC and is stuck in Russia.

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Danika has AMC and is stuck in Russia.

“And what about the ones we can rescue? Do we? Right next door in Ukraine and Bulgaria and Poland and Serbia there are many, many orphans waiting. They are dying waiting.”

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Rachel, why do you weep?
Why do you bury your face in you hands?
Is there no one who would reach you?
Is there no one who understands?

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There is no one to comfort her, (there is no one to comfort her)
For her children are no more, and there is no one to comfort her.

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Raymond. Available for immediate rescue.

Rachel, why do you cry?
Why do you hide your trembling lips?
Are those tears stains on your brow?
Are those tears on your fingertips?

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Aubree. Available for immediate rescue. She has asked tearfully for parents.

There is no one to comfort her, (there is no one to comfort her)
For her children are no more, and there is no one to comfort her.

Now and always,
Now and evermore,
Now and always,
Now and evermore.

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Leo. Available for immediate rescue.

I see angels in the distance,
In the distance, I see angels, and their shadows fall like crosses on the fields,
Some are swinging low the sickles, some are binding up the sheaves,
Some are sifting out the harvest yield,

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Caius. Available for immediate rescue. Needs a mommy.

Rachel, run to join the angels in the harvest in the distance, rising from your bed as from a dream,
In the feint and splintered line where the wheat field meets the sky, you might find your sorrow made complete.

All who sorrow with her, lift your heads,
You might hear the sound of Rachel gently weeping, for the gathering is done and her children have come home,
Whom she counted lost and dead, now to find were sweetly sleeping

in the fields

where angels have been reaping.

“The Harvest is the End of the World” by Charlie Peacock

 

 

 

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.

Roland don’t ever scare me like that again, you hear me!

Tuesday, January 1st, 2013

It went like this.

Super happy crazy boy one minute…

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(Click here for video.)

And seizures and vomiting the next minute.

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We had a super fun time with pizza and friends. Everything went great. I put two hyper, pizza-covered kids into bed around 9:30pm. The next morning around 8:00 Roland woke up covered in vomit.

After that he stayed in my arms for the next three and a half hours. I admit I enjoyed it. Baby in one arm and Facebook in the other. We took naps together and he snuggled under my chin. Then he would make a noise, I would get out the bucket and he would puke and then go right back to sleep in my arms. I just purred over him. He is usually so crazy rambunctious so this was nice. We even took a picture to remember this.

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But the poor guy kept throwing up which worried me. He threw up small amounts eleven times in those three or so hours. I had a cup of apple juice ready for him but he wouldn’t stop puking or sleeping long enough to get any fluids. Then right before noon he started his first seizure. I ran him out to the living room to show my husband. It was the tail end, but Charley took a video. When he started another one we ran out the door. I jumped in the driver’s seat while Charley loaded him into his car seat. He didn’t look good. The emergency room is only about four or five minutes using back roads so I took off instead of calling 911. Roland had five (maybe more) seizures after that. He was seizing in my arms as I ran him into the ER, and he continued seizing as the RN took him from me. The RN’s name was Steve and he was a big guy. My little guy looked *so* little in Steve’s arms as they quickly made their way through the double doors. Whereas I was a panicky mess, Steve calmly described the seizure as it was happening and that made me feel like maybe this wasn’t so bad. Maybe everything was fine and they see this every day and it turns out okay. So I calmed down a lot.

Then I answered about 800 questions about arthrogryposis and adoption, none of which were helpful for a seizure, but the doctors needed his history. One doctor asked if I was his mother and then demanded to know why I left him in an orphanage for almost two years. I explained I adopted him and he’s been home four months. She replied incredulous, “Wait, but you said you were his mother!”

The truth is shocking. He has no medical history. I don’t know what he weighed at birth or if he came early. I don’t know how healthy his mom was or what surprises are in his genes. I don’t really know what they gave him at the orphanage. I don’t know what drugs he’s been exposed to. I know he has a lead count of 2 (at 3 they do medical intervention) and he has had to catch up on vaccinations, but other than that I’m no help at all. I kept being asked, “Has he ever done this before?” And kept having to answer, “Not in the last four months!”

And in the back of my mind was the knowledge that he had been misdiagnosed with convulsive disorder in Ukraine. That diagnosis turned out to be false. (The “doctor” had mistook a jerking arm for a convulsion because she didn’t realize AMC came with muscle loss and he would need to swing his body or bounce his arm to move it. After meeting Laelia and seeing how she moved the doctor said Yegorka [Rolly] did not have convulsion disorder after all.) But what if it was true? It was scary to think about.

I was worried Roland would be scared of the hospital or strangers, but at this point Roland was completely unresponsive–no eye contact, couldn’t close his mouth, non verbal, limp, eyes rolled back. The nurse was checking out his head and shoulder for veins, but finally it was decided that he needed an emergency cast removal in order to place the IV. I was glad Laura (from Dr. W’s clinic) was there to do it since we know her and she is super fast. Roland had a startled response during the sawing part, but he was not “there.” His eyes were crossed and downward, the right side of his mouth did not move while the other side twisted in pain and he looked like he was in a coma. I kept crying, “That’s not normal. He never does that.”

Roland was given ativan and glucose. He was hypoglycemic with a blood sugar count of 19! Normal for his age is 70s to 80s! Eventually Roland made a noise. I asked him to say hello but he couldn’t. (I ask him to say hello about a hundred times a day and he happily complies about a hundred times a day.) He was rolling his eyes looking around the room, but unfocused. It was creepy. Eventually he looked right at me and seemed to recognize me (he had not up until this point) and he lifted his arms for me. The nurse said, “That’s the glucose working!” I asked him again to say hello and he tried so hard to speak but couldn’t. A tiny squeak came out, but you could tell he was trying. It took him a while to come out of the seizure. Eventually Roland looked at me, right at me, and said “da.” Then he looked down at his arm which now had no cast and an IV and wires and he just looked baffled.

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Roland’s right arm without a cast and with an IV.

Every finger had to be poked more than once so eventually he was just covered in bandaids.

Charley and Laelia then came through the doors at this point. We were transferred from the ER to the critical care unit as a family. Because they had to move fast and Laelia cannot walk that quickly Steve put her on the bed. She comforted her brother and enjoyed the ride. Roland was still completely out of it and barely noticed his sister.

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We left the ER and arrived at the critical care unit. Roland was connected to more monitors and the doctors came up with a game plan. They wanted to get Roland’s numbers up, keep them up long enough to make sure he was out of danger, and then purposely lower them again in order to run tests. So he went from 19, up to 120, then artificially crashed back to 40 to run the tests. Poor guy was so scared every time someone took his blood pressure or poked his finger or anything. Then when they introduced glucose again after the blood draws his numbers shot up to 250! His poor body just couldn’t regulate.

The hospital had Christmas presents for patients left over so they gave him a dog pillow. Roland hugged and kissed it (he’s really attached to stuffed animals) and then fell asleep with his wittle face pressed against the bars. That was his favorite way to sleep.

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After the tests were run we had to wait overnight to get answers. In the afternoon Roland was sick of the hospital and tried to take a nose dive off the crib and pull his wires out. I ran home with Laelia and we grabbed Roland’s pillow, blankie and teddy bear for comfort. (Also a toothbrush for Daddy.) Roland settled at that point and fell asleep… only to be woken up several times with blood pressure tests and blood draws and finger pokes and monitors beeping.

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Okay here’s what we know. We know the seizures were absolutely caused by low blood sugar. Not an injury (that boy is always bumping his head), not a brain condition (so no MRI needed) or anything like that. Here’s what we don’t know: why vomiting caused his blood sugar counts to crash that much. It shouldn’t have. Also we don’t know if the low blood sugar caused the vomiting or if the vomiting cased the low blood sugar.

Here’s the doctor’s guess after two days in the critical care unit: Roland had very small reserves for glucose from his life in the orphanage, exposure to lead, lack of medical care and poor nutrition. The doctors say that all his medical issues from being deprived early in life will be completely reversed with time and not to worry, but we will keep an eye on his blood sugar from now on. We have been educated about hypoglycemia and what to do in an emergency. (Of course our insurance denied us for the emergency medicine that would have saved our son five seizures if we had had it. Thanks insurance!) We got a chemistry quiz and biology lecture from the endocrinologist who should really be teaching in a classroom somewhere he’s that good. When we got home we had training on this new condition, a glucose monitor that even blood-phobic me can use and an emergency plan in place. After one night’s sleep at home Roland was happy and bouncy again.

 

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Just kidding guys! I’m fine now!

:-/

 When we got home we were informed that we had end of the year adoption reports to do. They ask what Roland’s diet, daily routine and health is like at home with us. It took everything in me not to write, “Like hell you care! F you!” and send it back just like that. But if Russ*a can punish thousands of dying orphans for the mistakes of 19 American families (out of 60,000 over 20 years) then I had better do what’s asked of me and what I’ve promised to do and continue to play nice. Still I’ve been pretty mad at Roland’s birth country, orphanage and birth family as well as those in my church and community who do. not. care.

*deep breath*

But now we’re doing well and everything is slowly getting back to normal. Roland says hello.

 

 

 

 

It’s Not Your Fault

Monday, November 26th, 2012

I wrote this for the AMC newsletter a while back. My audience was new moms whose children had just been diagnosed with AMC. The piece is titled, “It’s Not Your Fault.”

 

We tried seven ultrasounds to find out our baby’s gender. Each time we saw a black and white blur curled up into a pretzel. We were never told that our baby had any special needs. We weren’t prepared.

Babies with AMC are born stiff and curled up at birth. Ours was no exception. I just wanted to know if I had a son or daughter–something seven ultrasounds couldn’t tell me. After they pulled my baby from me via C-section I asked again what my baby’s gender was. “I don’t know,” a female voice said and then added in horror, “I can’t pull the legs apart!” The mirror they were holding up for me to see below the curtain got quickly snatched away. I started to get scared. “Why are the legs in the way?” I asked. A blonde woman leaned in close and rubbed my arm. “It’s not your fault.”

It’s not your fault. That was it. That’s not an answer. That’s a puzzle. What’s not my fault? What’s not my fault!

I didn’t see my only child again for five hours.

The first meeting with my daughter was shocking. Not because of her limbs (they had her swaddled), but because she was a tiny human life. The awe of it was overwhelming. She started to cry so I spoke her name. Laelia. She stopped and looked straight up at me. She recognized my voice! The intimacy of it actually frightened me. I immediately felt the weight of being completely responsible for a little someone. And not just any someone, but someone with special needs I didn’t understand.

Blame it on the heavy medication after my C-section, but I could not pronounce the word arthrogryposis correctly for the first three weeks of my daughter’s life. Heck, I had a hard time saying AMC. ACM? The days ahead were filled with physical therapy, fighting with insurance, painful stretching, serial casting and worrying. Not to mention breastfeeding. I found I was afraid of my daughter—afraid to hurt her. I didn’t understand her body and I grieved for the daughter I had hoped to have. This wasn’t supposed to happen. I stayed in this state for the first four months of her life as every trip to the doctor brought more bad news. She was missing the muscles to walk or lift her arms. She would be in a wheelchair for life. She would never walk. Upon hearing this, my cousin told me to start a blog and journal out my feelings. So I did. With a heart full of lead I started my very first post, “I have a physically disabled daughter…”

It has been four years since I have described my daughter in terms of “physically disabled.” It’s funny, but that just isn’t a good definition for this goofy, quick-witted kidlet. These days my blogs are full of life. I write about how Laelia lifts her arms by swinging them, how she walks all over the house in her KAFOs and how she’s the smartest kid in her preschool. That’s not the picture the doctors gave me, but luckily for me I had my AMC family—a group of people who knew this condition and didn’t let me give up.

So would I have chosen to have a child with AMC had I known? Yes. I’d choose this. My daughter is pure joy. Would I do it again? Haha! Absolutely. In fact, we are!

This summer we will be traveling to meet our son. He will be just under two years old. He has arthrogryposis. Arthrogryposis. I say it like a veteran now. Overseas my son has been given no hope of living a normal life. But I know different. I see his little legs and feet in that pretzel position and smile. Someday I’ll blog about what a joy he is. Someday when he’s crying I’ll speak his name. Roland.

And someday during an examination a medical professional will try to get his legs apart and I’ll tell her, “It’s not your fault.”

Worst day ever.

Thursday, November 8th, 2012

My day started out so well. I knew it was going to be hard since Roland was getting four casts changed, but the positive thing (about the only positive thing) about a hard four-limb removal/recasting is that after it’s all over Rolly sleeps like a rock when we get home. It’s like the nap of champions for an otherwise allergic-to-sleep awake zombie child. There’s a lot of emotional energy that he expends during days like this and sleep is healing for him. I was thinking maybe I could watch something on Netflix. Maybe I could even tackle the dishes. It wasn’t going to be a bad day, at least that’s what I told myself.

Roland was awful hyper this particular Tuesday. He was his tornado self. And I wish I could get a forecast for his levels of destruction before planning anything. But alas I had today and only today to go vote and he had to come with me. The polling place was very close by and I carried my son in there. They gave him my “I voted” sticker, which made him so happy. It should have instead read, “I distracted.” Or better yet: “I did karate moves while mommy held me football style and tried to vote with her other hand. Then I almost knocked over the cardboard booth, yelled hello (my new favorite word) to everyone ignoring me and tried to grab mommy’s ballot while loudly saying, ‘daaaaaaaaaaaadoooooooooooooooooo!’ which I’m pretty sure means, ‘Don’t look at that, look at me!’ And then they gave me this sticker! Best voting day ever.”

Then straight from polling place to hospital. It wasn’t until we pulled up to our spot in the loud underground parking garage that Roland got a reality check and calmed down from his happy madness. He wasn’t even singing or kicking when we entered the double doors. He was clinging to me by the time we went back into the clinic rooms. People commented on how good he was being. That’s fear, people.

We hit a snag when entering clinic. My husband had a career change recently (last week) and our insurance is through him. And even though we were suppose to have insurance during the transition, it had not been activated. And they would not remove any of Roland’s casts without payment or insurance. I was not about to lose weeks of ROM due to money so after many phone calls that went nowhere I ended up having to pay out of pocket. It was not cheap, but I couldn’t leave my son in four casts!

As for some good news, Roland is 50 degrees away from straight knees. He has 60 degrees of bend in his right arm and 75ish in his left. (Up from, 5!!!) That means we’re looking at only another month or less of casting his upper body before going into splints and back to daily stretching. His feet also look good. He has a flat left foot and is 20 degrees away from flat in his stubborn right foot. No idea how much longer lower body casting will be. But I’m encouraged!

After the buzzing saw, clean up and recasting was behind us I got a phone call from the school nurse. Laelia had a stye  on her right eye that was going away, but had developed a bad stye on her left eye recently that had just ballooned overnight. We think Halloween makeup didn’t help. Well the left stye had burst during class and I needed to pick her up immediately. I am literally right next to the ER at Children’s and so I ask where I should take her. They tell me the pediatrician. So I go to Laelia’s school, pick her up from the nurse’s office and drive straight to her pediatrician. I am a bit panicked because her eye looks so bad. Eventually a nurse comes out and says, “Yes you definitely have to see the doctor. You don’t have an appointment, but we’ll fit you in.” (I’ll fast forward the story past the waiting drama followed by Laelia needs to go potty drama, followed by poop blow out by Roland and realizing I did not pack wet wipes drama.) All of the sudden the receptionist goes, “Wait it’s saying your insurance is not activated.” I completely forgot. Didn’t the casting clinic work out fine? Oh right I paid out of pocket. I was really not thinking straight. I tried making all the same phone calls to no avail. I asked them to please just see my daughter and I would make payments if I had to.

Well two hours later both her pediatrician and another  pediatrician told us, “Go to the ER. Now.”  So now I’m loading both children up and we’re rushing to the emergency room WHERE I HAD JUST BEEN! (Casting clinic shares its rooms with the ER.) At this point Laelia’s eye had filled with puss and she couldn’t see. As she would put it, “But that’s what my other eye is for! Can we stop for tacos?”

We had one funny moment when I storm into the ER with one kid in a wheelchair and the other in four casts where the guy behind the desk asks, “I need both their names. Was it a car accident?” I’m like, “No, you’re just seeing the cyclops.”

They said they could see her right away so I was starting to relax. Then I hear, “Do you have insurance?” Acccccccccccccc!!! Yes. No. Well it’s the ER so they saw her anyway. The doctor said he thought it looked infected so they got a culture and prescribed an antibiotic and eye drops. But when he cleaned up her eye she started screaming. So he had me finish it up while he went to fill out the prescriptions. So I’m being so very careful but notice my towel is getting pink. Then all of the sudden, just like a horror movie, blood starting gushing from Laelia’s eye. It was like a red flood. Literally. Think the scariest thing you’ve ever seen. Laelia was screaming in pain. Roland was screaming to be louder than Laelia. I had to leave them both screaming and run from the room to get someone to help. In my mind I thought for sure my daughter would go blind and my son would be traumatized. (He is still hurting with four newly placed casts and no nap.) Doctors rush in.

It turns out that she may have had multiple styes and one popped at school while the deeper one on the inside of her eyelid popped and bled after I tried to clean it. So great. My daughter’s eye just decided to explode today… twice.

 

A little puffy and crusty three days earlier.

But she’s still happy. (There’s one on her right eye too.)

One day later.

But she’s still happy.

It pops at school into her eyeball.

Picked her up from school like this. (Note the smile. Really?)

At the pediatrician.

Partially blind in that eye at this point.

Home from the ER.

Can I have ice cream?

Roland threw  hysterics  off and on from that point forward. Through the horror, through the waiting, through the check out and anytime I wasn’t looking at him. He wanted his nap, darn it. Then he quieted down for a moment, looked up at me and threw up. Everywhere.

WHAT HAPPENED TO MY NAP?!!!!!!

Followed by *puuuuuuuuuuuuuuuke*

We were a wreck by the time I got to the check out desk. At this point I was upset about not having insurance… or wet wipes. They were telling me a ton of information about how to pay for this ER visit that I only half heard. Both my kids were crying and I still had to get Laelia’s antibiotics. I just kept nodding and signing things and then they let me leave.

We walked down the road into the pharmacy. While Roland screamed and knocked things off the display shelves (yeah they loved us) I handed the lady my prescription paperwork and it wasn’t, I swear, until she asked for my insurance card that I remembered, oh yeah, I DON’T HAVE INSURANCE! Accccccccccccccccc!!! After some back and forth, I ended up paying out of pocket for the meds since we needed them immediately.

I was walking back to my car (on the other side of the world) when Roland’s front stroller wheels decided to stop making any turns. So I was pushing him while dragging Laelia’s wheelchair behind me with her facing backwards, then having to stop and readjust every two feet. Thankfully a good Samaritan saw me and, even though we were going the opposite direction and well out of her way, she grabbed Laelia’s wheelchair and started small talk with her while following me to where they stab and rob people… I mean the RMDH parking garage. Specifically into the farthest, darkest corner of it where I parked when it was daylight and now was pitch black. The lady was nice enough to help without asking why my son was in four casts or my daughter had blood all over her face. Smart woman.

I had been calling my husband all day, but I had his other number to his other work phone that he had in his bag. He wasn’t able to find out we were in the ER for several hours. In fact it wasn’t until the very end of the day that he was able to come help. He made it to the ER just as we were leaving! We headed in two directions so Charley could get the tacos and I could get the ice cream for the little cyclops princess. Charley then fed the kids and gave me a little break to check email. The first email I read was letting me know the child (orphan) we had been advocating for this month had died.

I just burst into tears. My problems are so small. My insurance issues so petty. My children are happy and healthy most of the time. They are loved. This little seven, no, eight week old baby girl died alone and unloved. Three families had been interested in her. Friends had offered to blog about her and were working on their posts. And just like that. Gone. I haven’t gotten any details, but last I heard she had some fluid in her lungs from not being upright (read: held) enough. She was left in a hospital, but not getting the care she needed.

There was a moment where Laelia’s eye looked super gross that I considered for only a moment just going home and doing my best to take care of her there. It was because of my insurance situation. She had an infection and her stye would have burst at home. That would have been awful. And Laelia is the most precious thing in the world to me. But my insurance situation almost kept her from getting the care she needed. For those who don’t have insurance, who can’t afford it, who live without it, well, I just can’t imagine what they face.

Roland screamed off and on until well past midnight. He turned out to be dehydrated from throwing up, but he was able to keep down some water once I got him to drink it slowly. We were up anyway watching the elections. “President Awana” (Laelia’s words) won the election. And I have to say that I was relieved that Obamacare won’t be repealed. It will save lives. It will be there for NICU babies. It will be there for those with preexisting conditions like my two. I know Obamacare is unpopular to some people, but right now I want to give every penny I have to helping those without health insurance. I want to raise funds for those without it, especially those at risk like children or the elderly. I’m heartbroken for these people. I see this need with new eyes. But at least now the Affordable Health Care Act won’t be repealed and more people will get the access to health care that I have enjoyed most of my  privileged  life. Sorry this didn’t start out to be some political talking point. Definitely with elections having ended I’m not trying to make people think or vote a certain way. But I’ve heard a lot of dumb things during this election (which seemed even more petty as we sat in the hospital), and a few people didn’t stop to think about the hurting human beings they were referring to before spitting out their views on who deserves what. Bottom line: People in different situations than me deserve food and health care. I am not better than them.

It’s now Thursday night. Laelia swallowed a whole pill in a spoonful of apple  sauce   I’m pretty proud of her. She even held still for her eye drops. Roland threw up his peas and it makes me feel a little better thinking it might be a stomach bug and not stress from what we went through a couple days ago. We ended the night by lighting the candles in the fireplace and singing songs before bed. Laelia knew all the words. Roland… didn’t, but that did not stop him from making noises we’ll call singing. ;) We prayed for the orphans still waiting for families. Especially Aubrey, Elizaveta and Raymond. Then I tucked my children who I’m so so so thankful for into bed. They are gifts to me. I’d go through a hundred days like Tuesday as long as I get to be their mommy.