February 23, 2009 arthrogryposis, Family Stories, Orthopedic 0 Comments

by Amy, mother to Linzhi from China with arthrogryposis

We felt the calling to adopt from China in the spring of 2006. We happily filled out our applications, picked our agency, social worker, gathered all our paperwork for our dossier, etc… We were thrilled to get a our DTC and LID in a timely manner and just felt relief that we were finally in line for that sweet “healthy” baby girl or boy. So we thought…

The following April in 2007, I was at home watching the TODAY showing anticipating a story about a Chinese orphan. It never dawned on me that my whole world would be turned upside down in a matter of minutes. As I watched the show, I felt the Lord changing my heart towards “special needs orphans” Don’t get me wrong, I prayed for those sweet little souls everyday but honestly, I never felt we were equipped to parent a child with a special need. I doubted our knowledge, patience, and what would it do to my other children? Not to mention our marriage, time, etc… I didn’t understand why the Lord was asking this of us? Did He feel we were equipped, patient enough, had the time, resources and the faith? Why us Lord? That was my prayer as I prayed that day. Is our child a waiting child? Am I clear, this is what you’re asking of us? I could go on and on because that’s how the next 2 days were, lots of tears, fear, anxiousness and dare I say it… EXCITEMENT!! Once the fog cleared and we received even more confirmation from God we knew this was the road he was asking us to take and we were on board! I must add, my husband was not fearful or anxious, he didn’t hesitate for a minute when I mentioned special needs. I was the one resisting a bit… Just a little bit 🙂

After the decision was made for us to pursue a waiting child things moved pretty fast from that point on. Our agency notified us that we could indeed switch from NSN to SN without a problem and in fact, they were posting a new waiting child list within the next few days little did we know our Linzhi was on that list. I won’t go into detail on the referral process but I will tell you when we were matched with Linzhi, there was no clear diagnosis on her condition. It was stated as “upper limb deformity” and that was it. We put our trust in the Lord and went full speed ahead. He placed her so effortlessly in our arms, there was no point in wasting time worrying on the what if’s. She was ours and whatever her condition we would take care of her.

Once we were matched with Linzhi on June 29th 2007, We received our LSC in 65 days and our TA in less than 10. Before we knew it we were on a plane to China. November 19th, 2007, Linzhi was placed in our arms for the first time. I still get chills when I think about it. Our time in China was filled with tons of “what could this be”? Does it progress? Will she need surgery? Not to mention trying to bond with a three year old that never knew what it meant to have a mommy and daddy so we put her condition aside and focused on bonding with our new child. I think that did wonders for us because bottom line, we all have special needs, right? I mean, some you can see and some are beneath the skin and come out in other ways. The Lord was so present with us when we were discovering our new child in China, he gave us such peace knowing HE was in complete control of her life and we would continue to follow His lead.
When we returned from China in November, 2007 we had another blessing waiting for us. Shriners Hospital in Chicago accepted Linzhi as a patient, we were thrilled beyond belief! The only catch was, her first appointment wasn’t until June, 2008! We prayed and decided to wait until June and not pursue any other medical advice other than regular pediatric visits. I must add a side note. Linzhi experienced major panic attacks when seen by the pediatrician so we accepted that as a sign and spent that time getting Linzhi adjusted to her new family and surroundings.

This is the post from the days events that I copied from my blog

June, 2008 Shriners! Today we received the information we’ve been waiting almost a year for…a DIAGNOSIS!! Today at Shriner’s we learned Linzhi has a condition called “Arthrogryposis Multiplex Congentita” try and say that three times in a row… =) Basically, she has severe contracture “stiffing” of the joints in her wrist, fingers and elbows. The doctor also classified her as a “mild” case because it has not affected her legs, hips, ankles, etc… The Occupational Therapist did tell us it will not worsen or move to additional joints and should improve with OT therapy 2-3 days per week, home exercises (2x’s daily) and she must wear splints every night as she sleeps. I cannot begin to tell you how awesome it was to be at Shriner’s. The staff was incredible and to top it off the specialist that has taken Linzhi’s case is the head of orthopedics at Loyola Hospital in Chicago(one of the best in the nation). God knew exactly where we needed to be for our baby. She did so good today! No panic attacks, just a few tears during x-rays and her splint fitting…WHEW! I can’t tell you enough how much your thoughts and prayers mean to both CJ and I. I love the adoption community and all my wonderful friends that I’ve met through our journey to Linzhi. I mean it, you’re all the best! =) So now, we need to find a local OT therapist that has experience with this type of condition, exercise her precious little arms twice daily, strap her splints on at night (which she loves…go figure) and most importantly PRAY. The Lord is so good to us!!

So now it’s been almost 8 months since we got the diagnosis of Arthrogryposis and I have to tell you, Linzhi continues to improve daily, she amazes us with her problem solving skills, patience, will-power and determination and she does it all with a toothy grin. All three of my kids have changed my life and I love them all the same. Linzhi however taught me one thing I thought would never happen. Linzhi taught me to slow down. I know it’s seem silly but it’s true. Linzhi is 4 years old, I have to feed her almost every meal that requires utensils. I have to take her to the bathroom every time because she cannot manage it on her own (yet, she’s almost there), I have to make sure all the entry ways are clear of junk because if she trips, she has no way of breaking her fall, she needs assistance with every daily ritual that so many of us take for granted like, brushing our teeth & hair, putting on our socks, pulling up/down our pants, zipping our coats, rubbing our eyes, scratching our heads, picking our noses (LOL, I had to throw that in because Rachel my 5 year old will pick Linzhi’s nose for her!!!). Anyway, the list could go on and on but I joyfully do it ever

yday. Yes, it has slowed my schedule down to almost a halt when I really need to get somewhere but it makes me stop to think for a minute. The way I react to her limitations will eventually make her feel ashamed or burdened of herself and that is not how we feel at all so I take and make additional time for her and my other two. Our wish is for her to celebrate her uniqueness and be proud of how far she has come. Bottom line, God makes all of this possible, I always fell short in the “slow, patient, relax” department but since Linzhi entered my life I had to quickly adjust my way of doing things which overall benefited the whole family. Now, I don’t want to paint a picture of shiny happy people family, that’s not the case. Not only did I have to adjust, CJ, Trevor and Rachel had to as well. But God is good and faithful and step by step helped all of us in different ways. Having a child with a special need comes with many challenges, some foreseen and some that come out of left field but it also brings so much fulfillment and joy to be able to witness a miracle everyday from God. When Linzhi turned on the bathroom faucet for the first time our neighbors probably thought we were a bunch of lunatics (our windows were open and we were very loud!) but to Linzhi that was a HUGE victory!!

My advice to anyone thinking about adopting a special needs orphan is this. PRAY, on your knees pray. Ask the Lord what his plan is for this child and if it includes you as their parent. Gather as much information as you can from parents that have adopted a SN child. I was glued to some many blogs during our process and it helped more than I ever thought. Don’t focus on the diagnosis or the limitations, focus on the child! When our agency told us to prepare for this child to be completely dependent on us for the rest of her life, we truly didn’t believe it. And it’s not true, Linzhi’s future is very bright, she is making great strides in OT/PT and her long term prognosis from Dr. Light is this. She will have a full productive, independent life (God willing). Yes, she will need accommodations such as door handles, hooks to help her dress, etc… but overall, our Linzhi has a very bright future!

One last thought to share, if the Lord moved mountains and calls us to bring another waiting child home, we would in a half of a heartbeat!

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2023 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.