Love Beyond Sight

December 6, 2016 cataracts, congenital blindness, December 2016 Feature - Sensory, Family Stories, first year home, hypoplasia, medical needs checklist, micropthalmia, Newly Home, prosthetic eye, referral, Sensory System, vision loss 1 Comments

I have always been a planner, always been cautious. I had even been planning this adoption since I was 12! What I hadn’t planned was that China would become a special needs adoption program by the time my husband and I were able to adopt.
It was daunting looking over the Medical Checklist. I could barely pronounce half of the items on the list let alone know what the condition entailed. I was scared. In the months leading up to filling out our Medical Checklist, I filled my head with more knowledge than I ever thought possible on needs from limb differences to skin conditions and heart conditions to vision loss.

After a lot of prayer, help from BTDT Moms and our pediatrician, we filled out our Medical Checklist. The condition we struggled with the most to include on our MCC – vision impairment.

I was going to plan this adoption process just like I had everything else. I may have a Medical checklist on file, but I knew the breakdown of special needs most seen by my agency so I had a pretty good idea what kind of referral we would get, and I knew the timeline would be about two to three years. A long wait, but that was that.

While I was on all the Facebook Waiting Child Sites and Rainbow Kids, my husband and I had decided, we are planners. Stay the course. Our agency will call us with the child that was meant to be ours.

We submitted our medical checklist in March and waited for a match. God had other plans. While I was looking through one of the waiting child Facebook groups and one day in August, I saw a little face.


jenny


I didn’t even read her info… I just saw her face and I knew… that was my daughter. I could not believe it. I had heard other families tell stories like this – as soon as they saw their child’s face they just knew. When I heard those stories, I thought they were crazy. I thought that is not how it is supposed to happen; you are supposed to be matched with a child by your agency and follow the process.

This was not part of my plan. This is not how we were supposed to find our child, but when I saw her I couldn’t deny it. That night I showed my husband her picture and the available information. His response: “How soon can you call?”

Could this really be happening?

The next day I called as soon as the agency opened.

The description on FB said she had some vision loss due to cataracts and hypoplasia in both eyes. It mentioned that she did seem to have some vision and could be seen tracking objects.

We were able to obtain her file and the file was very vague. It also looked like she might have some additional conditions that could have been part of a syndrome. We had several doctors look over her file and none seemed to agree on a diagnosis. What everyone did seem to agree on, though, was that this little girl has at best very limited vision – that she would eventually be totally blind if she was not already. And every day spent in an orphanage where she was not getting care could make her vision worse.

We knew other families had turned down her file and, while I was (selfishly) grateful that she was still available, I wondered what these families knew that we didn’t. To be honest, though, at this point we didn’t care what anyone said.

We wanted to know to be prepared, but she was our daughter regardless.

We read a quote by Francis Chan: But God doesn’t call us to be comfortable. He calls us to trust him so completely that we are unafraid to put ourselves in situations where we will be in trouble if he doesn’t come through.

This describes our journey perfectly. There were so many fears and unknowns with our daughter’s vision. Of all the conditions on our medical checklist, this was the one we were the least comfortable with.

But God doesn’t call us to be comfortable; He calls us to trust him.

I connected with other moms on FB who were parenting blind children, obtained resources and we continued to educate ourselves on blindness. We even had the opportunity to take our daughters to the American Printing House for the Blind and let them try a braille writer and cane prior to bringing their sister home.


jenny1


As we were preparing to travel, we had a new plan. I knew the steps we would take when we got home to address her vision and get her started right away with early intervention. We were ready.

I thought I would be able to assess her vision once she arrived and communicate back with our International Adoption doctor right away. The day finally came and our daughter, Hannah, was brought to our hotel room. The lady who brought her was one of the directors of the orphanage. She had not personally spent time with Hannah and could not answer any of our questions.

Hannah was bundled tightly and sweating so badly that I had to take her first layer of clothes off. She ended up being sick; she had a high fever and her mouth was so swollen it looked like she did not have any teeth. Our agency sent a doctor to our room, he gave us amoxicillin granules that we had to mix with water and told us repeatedly that she had “fire in the belly” (we still don’t know what that means).

The first few days she could not sit up on her own for long periods of time, she had a hard time swallowing and she did not make any noise. She was so floppy and had very low muscle tone. I was terrified the first week we were in China. I think the mixture of the sickness and grief from being taken from all she had ever known was just too much for her and she was shutting down.

We moved forward and continued loving her, kissing her, feeding her, playing music, talking, cuddling, praying and within a few days she seemed to gain some strength and started showing some personality.

By the time we left for Guangzhou, she was crawling and we were able to tell that she did have some vision and a lot of low muscle tone. Her vision seemed to get better throughout the trip, and I was amazed by how well she could maneuver the tight spaces in the hotel room.


jenny2


Before Hannah, I thought that being blind was total darkness and everything else was a visual impairment. Truthfully, there are very few people that do not have any sight. Most people who are blind have some vision or light perception. I thought we could handle Vision Impairment and not a blind child, but my child may always be classified as blind and that is OK.

Hannah has been home about eight months now. You would think with all the doctor appointments (and my planning), we would understand her vision by now, but we don’t. We know she has congenital cataracts, bilateral microphthalmia and atresia of pupils (only one of these things were listed in her file). All things that sound super scary to me when listening to the doctors. We don’t know how her vision will be once the cataracts are removed. We know she will be getting a prosthetic eye in the coming months to ensure that her face continues to grow correctly.

As for the future…
Will she drive?
Will she use braille?
Will we get a service dog
? (my kids hope so!)
That is all to be determined.

What is determined is that visual impairment is not an issue for our family.

Visual Impairment has not changed the way we parent. Sure we have to keep up with her glasses when she throws them across the car. We may have to move our seats around at the kitchen table occasionally so she is not sitting in the sun, because she doesn’t do well in bright light. We may find ourselves being cautious when she is on a playground or in a new environment. But this little girl never ceases to amaze me.

She has everyone fooled. When people meet her for the first time and see her walking and playing they have no idea she is legally blind. Even the doctors watch her with amazement.

Our house is not overly clean and organized. My big girls play with toys of all kinds, and they are everywhere. And Hannah, she plays too. She is no different from her sisters. She gets around great. She is everywhere! She stands on her head and climbs everything. She’s doing gymnastics, and will be starting preschool next month.

If you had told us six months ago she would be walking and climbing and ready for gymnastics, we would not have believed it! Now most days I forget she even has a visual impairment and so do most people.

I am grateful that my planning and lack of knowledge did not keep me from our daughter. I am convinced that she does not need my planning to help her achieve whatever she wants. There are blind doctors, lawyers, moms and dads.

Nothing will stop this little girl.

We are just here to make sure she gets the care she needs and, above all else, the love she deserves.


jenny3


Resources:
Hadley Institute for the Blind and Visually Impaired
American Foundation for the Blind
Wonder Baby: Perkins School for the Blind
American Printing House for the Blind

– guest post by Jenny



One response to “Love Beyond Sight”

  1. Julie says:

    Aww thanks for sharing. We leave for China in a few short weeks to adopt our daughter who has a vision impairment. Your story is very encouraging. Our daughters caregivers tell me she doesn’t know she is any different from others and we plan to keep it that way!

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