special need highlight: adopting a child with limited mobility

April 26, 2014 by nohandsbutours Central Nervous System, Family Stories, Incontinence, spina bifida, wheelchair bound 5 Comments

It was April 2012. We had just completed our first adoption from Uganda. The 6 month wait had been satisified for the state of Ohio and we’d just fully adopted our new son.

Then…we fell in love with a story and a picture. A sweet little boy waited for us in China!

10 months later, we were bringing him home.

During the fundraising and paper chasing, I began to become burdened to help advocate for other orphans…afterall, it was via Kelly’s blog that we found our amazing son!

I began to share children as God would lay them on my heart.

One girl, in a string of many, was a 9 year old girl with spina bifida waiting for a family. Her file said she could not walk and was incontinent.

Etsy

I shared her on November 20, 2012.

The next February, someone else also advocated for her, using the same now-familiar picture of her in pink sitting in a wheelchair. Waiting.

My heart did a flip flop and I heard God speak to my heart plain as day, “You can handle her needs.”

“What?!”

{for the record, we were not looking to keep on adopting!}

Then I looked back to the verses I was reading in the Bible. I literally had stopped right before the words, “Be careful that you do not refuse to listen to the One who is speaking.” (Hebrews 12:25)

Um wow.

We got TA for our son in China just two days later. So, with the excitement of adopting our son we traveled to China with a secret burden for this girl who also desperately needed a family.

As it would turn out, we would adopt our Toby, return to the States and a mere 3 days later begin the process to bring that very same wheelchair-bound child home as well.

We were indeed crazy. Cray cray crazy.

And fast forward 10 months, we boarded a plane and brought her home to our family too.

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While in China, a great scare took place. You see, we did step out in faith…at just the right time. Had we refused to listen, or even dawdled…our dear daughter (now known as Esty) would have died in her orphanage.

Being incontinent, she used diapers. The orphanage only permitted her 3 changes every 24 hours. She sat soiled most of the time. She trained her body to not drink much water. All of it was the perfect scenario for repeated UTI’s. And the day we busted her out of the orphanage (4 months ago!) she was actually very sick.

They did not tell us she was ill. They merely gave us Tylenol and said, “for IF she runs a fever.” It turns out that she not only had a UTI, but her kidneys were infected. By Friday she had gone septic. Her life was about to be snuffed out. We got her to an International medical clinic and got her on an IV antibiotic treatment that lasted 5 days. The doctor said this was life threatening and she would have been gone within the next 1-2 days!

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Literally, had we not left the week that we did…she would have died. I cannot imagine! She is so much part of us now.

Her file listed her special need as “Spina bifida” along with “deformed feet” and “incontinence.” These alone are manageable. It turns out there is so much more than just these diagnoses. Her kidneys are permanently damaged and do not function properly. She has permanently dislocated hips, scoliosis, possible cord tethering and neurogenic bowel and bladder. Oddly, her feet are not deformed! She now wears AFO’s (ankle-foot orthotics) and is learning to walk using quadri-canes!

Often I go back to God’s whisper, “you can handle her needs,” when I am stressed out, tired of driving to doctor appointments, tired of passing around our other 6 children and caring for her needs that are at times, nothing short of overwhelming.

I remember: I do not do this in my own strength.

We adopt not because WE rescue these children, but because HE displays His passionate pursuit of their hearts through our hands and feet. We serve, we love, we train hearts and cry with them as a beautiful picture of what Jesus does for us…and through us.

This afternoon, she and I were talking about Easter. When Esty came to us, she was on death’s door and knew nothing of Jesus. Today I answered multiple questions about Good Friday, Easter morning, baptism and repeated to her the truth that when we give ourselves to Him, He changes our hearts completely.

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Just this morning, when she struggled to catheterize in the public restroom…I offered to wash my hands and assist her, “No! I can do it!” she emphatically stopped me. I was amazed. She had been working non-stop for a straight ten minutes to make it happen and STILL she did not want me to bail her out. Someone else needed the restroom and knocked outside the door. I was antsy to get moving and free up the bathroom. I waited another few minutes trying to NOT help her. (It would have been SO EASY for me to do it for her!) “Want me to wash my hands so I can help?” I asked her softly. Her answer as determined as ever was the same, “No, I can DO IT!” her eyes strong with determination.

And she did.

Not all spina bifida cases are as severe as our Esty’s. Many children can walk freely. Some run! There are some who have completely nothing at all below the waist and will indeed be wheelchair bound. We have been called to our daughter who will most likely learn to walk with canes or some arm type brace but use the wheelchair for long distances. Her incontinence will be lifelong as will her other diagnoses. I am confident that the longer she is home, the more we will learn how to manage these things and will one day fall into a routine. I know that she will become independent.

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By saying yes to her, I landed myself a front row seat to watching God work His miracles in her life, as well as be inspired by someone who has the cards stacked against her, but comes out on top EVERY. SINGLE. TIME.

~Guest post by Amy (Visit Amy’s blog for an amazing update on Esty’s health!)

Waiting Children

Cailey was found at 2 years old and had already had surgery for her SB. At the age of 4 years, she had detethering surgery and from that time, she has been trying to walk. She has progressed from walking by holding onto the handrail and then standing unassisted and finally to walking unassisted although she is unsteady and falls easily. It is assumed she has accomplished that all on her own – without the aid of PT, AFOs, all without the love and support of a family. Just think of this child’s potential with access to therapy, AFOs, and perhaps forearm crutches and most importantly a family to cheer her on! She has a spirit of determination and preseverance. Sadly, that spirit won’t take her very far being an orphan in China. An update said: She refuses to be confined to a wheelchair and continues to try and walk although she is unsteady. Cailey is on the shared list and can be adopted by a family or single woman using any agency.

Cailey

Peri is 8 years old, and new to Heartsent’s list! Peri came into care when she was 6 years old, with a scar suggesting she had undergone surgery for a spinal meningocele. Peri cannot walk, but is able to crawl. She is bright, very social and sweet, and loves music. Her file states that she is not afraid of strangers, that she is lovely and has a good self care ability, being able to eat and get dressed on her own. Beautiful Peri is not able to use the bathroom without help but she can play on the ground and crawl. Contact Heartsent for more information. She can be adopted by a single woman or a family.

Peri

Sulley is in a great care facility! All of his friends have left or will be leaving with their families soon. It is starting to really get to him! He has an account on Reece’s Rainbow. Sulley is an adorable boy with a great sense of humor! He is attending school through his group foster home. Sulley has a diagnosis of postoperative meningocele, scoliosis and deformity of thorax. This funny, sweet little boy is waiting for a fun loving family to find him. Watch his videos here and here. Sept. 2013 update on Sulley: “There are five kids in (Sulley’s) foster family, four of the others have families coming for them and will be adopted soon, he is the only one doesn’t have family, he tries to not show people he cares about it, we all can see he cares and also makes him is different from before, he is not that happy and joy like before. But it is true he is more complete medical case.” Please someone choose Sulley! Imagine how happy he would be to hear he had been chosen by a family and was being adopted!

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For more information about beginning the adoption journey contact the Advocacy Team.



5 Responses to “special need highlight: adopting a child with limited mobility”

  1. My daughter, Madison, has renal refllux and has never been dry. She is now 15 and doing really well, but we had the same diaper problem in China. She was only changed a few times a day and had welps on her pelvic bones because the diapers were too small for her, but forced onto her anyway.

    It took a good 2 months to get the welps to go away and we were so thankful to find pull ups and now Depends to help her incontinence. We have since learned that she has one kidney that is in moderately good shape. If we could have adopted her earlier (she was adoption 3) we may have been able to help her sooner, but we came at the right time (his time)

    So many things to learn and be thankful for! She was such a sad 6 year old at adoption-but we enjoy every day with her at 15 and I am so thankful for Depends I may have to buy some stock in it!!!! Love her–lots of education needed in institutions about these children. Thankful for the groups that are trying to educate the aiyes that take care of our children and other left behind! Blessings to you Amy–and thousands of other families making a difference! Sheila Temple

  2. Sarah says:

    Thank you for sharing your story. Our 10 year old son has s/b. He is an absolute delight. We could never have asked for a more affectionate, sweet, enjoyable little boy. We cannot imagine our lives without him.

  3. Karen Pugh says:

    Loved the story ! My 8 yr old also has SB,( a milder case) , one kidney and chest wall deformity. It’s amazing what skilled medical care can do ! After two massive operations, she can run and play like anyone else. She’s on an overnight camp out with her Brownie troop tonight☺️

  4. Heather Knowles says:

    I was born with SB. My parents were told I would never walk, I would be incontinent, would not live past puberty and would never be able to bear children. I am 55 years old. I am fully in control of bladder and bowels. I have 3 birth daughters and 2 adopted daughters.

  5. Kam says:

    AMEN!!! LOVE this story of God’s grace and favor…both for you and beautiful Esty! To God be the glory, great things He has done!

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