Friday, February 4, 2011

The Disability/Ability Thats Got Me Thinking!?!

This pic has nothing to do with the post! I love this sign and take a picture of it every time we eat at this restaurant! 
Except the pic is a little different now- we have 4 treasures in it!! Can't wait for next year!

Okay- my friend Sally said very simply-

So I will. No we are not doing anything- we can't yet. We have to wait until the time is right.

Lately I have been thinking about limb differences or missing hand or foot. Our friend Anita is sharing her Journey to Kaleb and that little guy has my heart wrapped around his finger.
And our friend Karin has shared her daughter Zoey's journey. Zoey had her foot amputated and is now sporting a very nice prothesis!
Both of their stories have spoken to my heart. 
I know there are many more in fact if you know of one please send me to that blog!

I have always looked at anything regarding the limbs as a major disability. Let's face it we need our hands and feet.
But these children cope, they improvise and the do so well. They make it work. I think they are incredible and I am finding myself intrigued and wondering more about this disability- which I now look at it like an ability!

I have to be honest- it is one that I have actually been a little afraid of - it looks different, people might stare or look at my child(it could hurt my child and upset both of us). Because of God's desire for our family(it's large) - well, we get stared at a lot. A caucasian couple - with 4 to 6 to 8 asian children- we are going to get stared at no matter what- better get used to it!!. At that point they won't be staring at our son's hand- they'll be thinking lots of things but his hand or her foot won't matter. Plus IF you choose to dress them a like which we often have, it's like we are immediately calling attention to ourselves anyways!

It just doesn't feel so scary- it feels doable.

The other two disabilities/ abilities that I have thought about is congenital heart defect - it is amazing what these surgeons can do! It's like giving a child back his life!
Thalasemia is another one. I am not sure that I completely understand it but from what I have read it is doable. Sometimes downright easy and other times it requires monthly DR. visits for blood transfusions- I can do that!

Have you found God working in your heart regarding adopting a child with special needs? Has He opened options to you that were previously closed?
I think He is so amazing!!


Andy said...

Hi Jean! I have followed your blog for awhile now and you are a great leader in the voice for adoption! Our daughter has cleft hands and feet. We are very passionate about this special need! It is really not a need at all! She has had a few ortho surgeries to make things function a little better and "look" a little better, but her function is perfect. Her hands and feet will never look "normal" but she is more than normal and it does not really affect our lives at all. Our adoption agency has mentioned that majority of parents will not even consider this need because of the looks, but it is such a do-able special need. If you are out there researching limb differences, please consider cleft hands and feet!

"Are These Kids All Yours?" said...

Totally....our Hannah that went to be with Jesus a week before her Ethiopian adoption- had severe scoliosis and spina bifida. We are open to pretty much anything. I think it TOTALLY used to scare me more.....until God totally opened us up. One thing we have really had on our hearts lately is Down Syndrome. Who knows where that will lead.

Wright Family said...

I used to drive a friend to a nearby hospital every month so that her baby could have a blood transfusion. I don't know if it was thallasemia, but I do know that when he got older and his parents moved to Africa as missionaries, he didn't have worry about malaria because he couldn't get it due to his blood problem. God will bring good out of bad and sometimes let us see it !Catherine

Rebekah said...

Jean, both our waiting boys have limb differences. One is much milder than the other. ZZ will need a prosthesis, and this is something we have no experience with, lol! But his vigor and exuberant smile tell me he will adapt very well! (You ought to see the video we have of him running down the hall on his knees! Precious!)

(And I totally am smitten with another waiting little boy who is missing an arm. But I guess I can't do anything about that now. Do you have to wait til you get home before you start looking again, lol!?!)

Chad and Kristy said...

I ran across this blog awhile back.. they just adopted a little girl with no arms.. she is adorable and amazing.. they also have two blind girls adopted from China.. they just brought one home the same time as the first child mentioned above. Blindness has always been out of the question for me but this little girl just melts my heart.. she is so sweet and loving... every time I read about her she just gets more beautiful!

Holly said...

First of all I'll bet you didn't know that Josiah has a limb difference :) Yep. his is mild. He has what is called hemihypertrophy which basically in laymen's terms means that one of his legs is bigger around and in length than the other leg. It could continue to grow just as it always has proportionatly or someday just take off and start growing really fast and out of proportion to the prior leg length discrepency. I will be happy to talk more if you want. Also, I have a friend who adopted a son from China who was missing an arm and he is fine and healthy and happy!! I have another friend who is in the process of adopting a little boy also missing an arm and on my blog roll I have some bloggy friends who just adopted a little baby girl born with no arms at all. She uses her cute little toes in the place of fingers. She is amazing! They also have 2 children from China who are blind, one who has a serious heart defect and one who has arthogyposis (sure I butchered that) and they have 3 or 4 biological children as well!
My passion has become HIV+ adoptions though we do not have any children with that condition!
If money were not a stumbling block for us, the little boy I just posted about today would be ours!!
Thanks for sharing!!

Adeye said...

Yup, friend, God has done such an incredible thing in my heart too over the years! I NEVER thought I could do mental disability. Ever!

Oh things have changed :)

Janet and Kevin said...

Our Elijah has a heart defect in addition to his cleft lip/palate. The holes in his heart that Ch*na reported have healed, but he still deals with pulmonary narrowing. We see a cardiologist every six months, and at this point Eli does not need surgery. He might in the future, and it does scare Kevin and me, but we know he is the son God wanted us to have, so we went with it!

janet and gang

KT said...

we have two adopted kids from china and one, shepherd has a limb difference. here's our blog
he is the most precious child and everyone loves him so much!
I am also advocating for several children right now and one will be 2 this month and is post op VSD

annek said...

Hi Jean!
Love your blog and your family's heart for adoption. We are also
"older" parents whom God has shown that we have more room in our home and in our hearts for another child. We have three bio kids, one son from Korea, and two from China - we are leaving in three weeks to go pick up this last little boy, Joshua. He has three fingers on his right hand and just a pad on his left. This seemed easy to us - no surgery required. I think he will adapt easily because having hands like this is all he has known. But yes, people will stare and ask questions, but our job is to give him the confidence that he needs and teach him that he is precious in the Lord's sight. You can follow along on our trip with my daughter's blog:

Take care and may God direct your decisions.

Anne in AZ

Susie said...

Hi Jean,
Well, you saw my blue baby this summer in Nanning! 11 days after we came home Lizzie had her open heart surgery and has healed amazingly. She is unstoppable! She may need a valve replacement in the future- hopefully in her 20s or 30s if at all. She right now goes for checkups every 6 months...she has some stenosis, but that is not unexpected. No restrictions on her b/c of her heart! We weren't going to do a heart baby- no way! That was too serious! Thank GOD we changed our minds! Now the most serious thing on our minds is how to keep her safe from climbing! You can read about her recovery on our blog from July if you want!

Sophie said...

Good post Jean, it's amazing when we are open to God's plans how He changes us and makes us look at things differently. I too have considered adopting a child with a missing limb but the thought frightens my husband. Truthfully heart conditions scare me only because my brother died suddenly at 27 from a heart condition that we were unaware of, it was devastating. As long as you're aware of the health issue you can prepare yourself.

And you're right, people will stare regardless.

Suzette said...

When we said we were open to a heart condition we expected to take on one that was very minor. Little did we know that our baby girl would have tricuspid atresia and would have to undergo a very lengthy open heart surgery quite so quickly. God has blessed us so abundantly through this and we have seen Him work miracles. We were originally told she would most likely always be on medication and would most likely never bear children. When we went for her 4 month check-up our dr. told us that in 6 months if she continued to do so well she could come off of all meds and should grow to be a healthy lady in the future. God works miracle!

Anita said...

Well I kinda wondered if our sweet boy had opened your heart to his needs. :) He's got my heart wrapped around him too!! Yep, he has a limb difference and a heart defect (repaired VSD) and one more, too (we'll see what more when we get him home) AND Kaylin has a repaired heart defect (Tetralogy of Fallot - ToF). If you need any questions answered about those needs, feel free to email me.

Always amazing how the Lord works in our hearts as we set out for NSN when we first started to our daughter and during the process the Lord confirmed a heart defect to me. Could NOT imagine our lives without Kaylin!


Sally-Girl! said...

Funny, I have always been terrified of heart issues and recently have started thinking, "Wow! Wouldn't be awesome to be able to change the life of a child with a serious heart defect that in no way could ever be repaired in China?!"

And since Gracie has so rocked our world, who knows maybe another designer gene kiddo is waiting for us!!!

Great Post Jean!!

Annie said...

Oh Jean, you are speaking right to my heart!!!! My brother has no fingers on his right hand and missing/small fingers on his left hand. He also has no toes on either foot and can do ANYTHING he puts his mind to. When I first saw our Lizzie's face, I felt drawn to her but when I scrolled down and saw her hands, I knew! I knew she was my daughter. Those were my brother's hand and I knew the Lord had been working on my heart for just this moment, ever since I was a little girl! Lizzie, like my brother, is amazing! I cannot tell you how many times people come up to me with a huge smile on their face because they have watched Lizzie (at 4 years old) make goal after goal in soccer or TD after TD in flag football. She is a true blessing straight from the Lord! Please email me if you have any specific questions. Lizzie has missing and fused fingers as well as having had one clubfoot and no toes on the other foot! I cannot imagine my life without her or my brother. They are my heros!

David and Janet Hurley said...

This is our "second time around" parenting too. When we were raising bio kids, I thought they had to be potty trained, count, say abc's and all that stuff before their piers......but who cares!!! God has definately taught us alot with age. Even so, I have always just NOT EVEN LOOKED at kids with hydrocephalus and heart conditions. Our son AJ, waiting in China, has both....although his hydrocephalus diagnosis is now absent corpus callosum, and his VSD has been repaired. I have not posted about his needs on our blog, but God led us to him because of WHO he is, not WHAT he is. He was our son's (Wes) best friend at his foster home for 4 years. When we wrote our care and nurture plan, we actually had to stop and go look up his need on his paperwork, because we weren't sure what it was.
But that's how God works. He loves us because of WHO we are, not WHAT we are=).

Learning Together at Home said...

Jean, we have two bio kids and are bringing home our third SN kiddo from China (we leave in 9 days!!). Our first adopted child has CL/P (severe and partially repaired in China) and also perforated ear drums. Once home we foudn out he has Apraxia of speech and moderate hearing loss. Our second adopted child was adopted older with one known need and just last week we heard officially that she also has Thalassemia (Alpha Minor - no transfusions, just a low iron count). Our third adopted child has a bilateral lower limb difference. Basically he was born without full legs. More than likely he will have amputations done in order for prosthetics to be fitted. He is already toddling around on his little risidual limbs! It's so amazing to think of the path that God has taken us on and in such a short time. I am so honoured to be able to be a part of His plan for our kids. I'd be happy to chat with you any time about any of my kids' needs.

Angela said...

Our sweet Lily, 8, home one week today, has several missing fingers and toes. As far as I can tell, she can do anything any other 8 year old can do. And honestly, I often find myself forgetting that she is missing anything. Probably because I am constantly mesmerized by that amazing smile of hers...

Stacy said...

Hi Jean!

I also have been considering lately heart issues and thalasemia. Hep b doesn't scare me much either.

One of my best friends has 2 girls from China. Their youngest, Ellie, has a limb difference. Lori only blogged while in China on the My Adoption Website. I will send her to your blog and have her give you her email address. Ellie is adorable and can do anything.

Can't wait to watch your trip to China!!

Stacy Richmond

Family said...

I love how God works in people's hearts. I have always always been drawn to kids with limb indifferences that is why I think its odd that he directed us towards our soon to be son with albinism and another with Peters anamoly. Neither I were aware of before, but now am not only totally in love with the boys but more than ready to travel their journey of special needs with them forever.
I can't wait to see what God is going to do with your new found interest!

Jo's Corner said...

Now this is coming from an adult with a limb difference. I became a BKT (Below The Knee) amputee about 4 years ago. And, honestly, there is not much that I can't do! Except walk! : ) But, I will walk when I get a prosthetic lining that I'm not allergic to. I am in a wheelchair and I get out and do ALL of my shopping, drive to Rochester for chemo appts., literally nothing has changed for me as far as my abilities. I just do things different than I did before.
I do not see or think of myself as Disabled. I really want to address the "appearance" part of your post. The people staring part. Yes, people look at me. How can they NOT see something different about me? But, it has never phased me a bit! I have to say that it's the little ones, the toddler age that is so much fun when it comes to my leg. They ALWAYS want to know "where is your leg"? And, I always answer them with respect and explain in a sensitive manner so their question is answered. And, then they are okay. But, after I explain, they ALL bend at the waist and try to look up my jean leg! It is so cute! I also tell the parent they are with, how well they have done in teaching their child that it's okay to be curious, yet polite. (Oh my, the looks on their faces when the child approaches me is Priceless!) Those Mommies and Daddies look terrified at what their child is going to say!. Buy, always, always the child is just so polite and only curious. That is why I adore children! They are so Real!
Having a limb difference is not a huge issue for a child. Especially for a child born with a limb difference. They have already learned to compensate and do things their own way. Children are incredibly resistant and do amazing things!
I hope this has helped some. I just love your heart and how you are open to bringing these gorgeous children into your family! Hugs! Jo

Kim said...

Jean I just wanted you to know that My Best Friend in the world adopted a 5 year old girl with Beta Thalasemia Major and her daughter is such a gem!!! If you have any Questions I can get you in contact with her... I too have been feeling a pull to those Children with limb diffrences.... God is moving my heart for the orphans ..... again!
Your Sista in Christ,
Kim Hughes from KC Mo

Sara said...

We adopted a little boy from China, 6yrs.old, now 8. He was born with cleft lip and palate. Had surgery in China (not correctly though, which was no surprise to us). He has had 2 surgeries to correct his palate and is doing great, just like a normal running around happy kid. We have a few surgeries ahead of us, but is not a big deal at all. He knows he needs his mouth fixed up :-)

Enjoy your blog! You and your husband are great parents!!

Faye Verquer said...

Go get little Luke from Bill and Lynsey!!! I would LOVE to be able to do that....