Kayleigh, part two

The scheduled our appointment for the next day. I went home and called Donny to fill him in, and it's a miracle I was able to talk coherently. I honestly do not remember much about the rest of that day or the next morning, I think I just walked around in a fog. We headed to St. Louis the next morning, Donny's parent's met us there. I remember being just a great big bundle of nerves. We finally get to see the doctor, after what felt like forever. He looked at her eyes for a long time. Then he sat back and with a chart, very calmly explained what had happened to our baby. She was born with a birth defect in both eyes. In laymans terms her eye simply stopped developing at some point in utero, both eyes at different stages. Her right eye's cornea is severely misshapen, her eye looks very cloudy and muddled and there is only a tiny speck of black in the middle for a pupil, and it is very noticeable. She can see nothing out that eye, it is light sensitive, but that is all. Her left eye has the same condition, only not as severe. She has a pupil and an iris and it looks fairly normal, but if you look closely her pupil is not a perfect circle like most peoples, it is larger and is misshapen, and it does not dilate. She can see out of that eye, she is near sighted, but with glasses she has 20/20 vision, in that eye.

I cannot even tell you the emotions that roll through you when the word birth defect and your baby are used in the same sentence. Kicked in the gut, air sucked out of you, room spinning, those are just a few phrases that might capture a hint of what you go through. Only a parent who has experienced this can even imagine. I just sat and stared at him with a look of dumbfoundedness on my face. I didn't say anything, because I knew if I said anything that the dam of emotions that I was barely keeping in check would break and I would have a breakdown. We went back out into the waiting room to wait to see the doctor again and talk about where to go from there. I just sat in the waiting room like a zombie, staring straight ahead, like I was in a trance. I couldn't put a coherent thought together, I was simply trying to digest this news.

We went back in and spoke to the doctor. The next step was to see a cornea specialist. If she was a good candidate a cornea transplant was a possiblity. We left that day with our world changed forever. My heart became much more fragile, and has never fully recovered. I could not call our family and friends to tell them what was going on, the minute I started talking about her I would melt into a puddle of tears. When Donny told my mom I could hear her start crying on the phone and hang up with him quickly. It was a hard day.

We saw the cornea specialist the next week. The plan was to bring her back to look at her eye in depth, through ultrasound and then to admit her to the hospital to put her under anesthesia so they could make a thorough exam of her eye with high powered instruments. They needed to make sure that the rest of her eye was formed properly, to make an accuarate assesment. We got through all that. We found out that the rest of her eyes was, thankfully, normal.

The doctor told us this, we could do a cornea transplant, it might work, might not. There were lots of risks doing transplants on babies so young. And if we were going to do the transplant and have any chance of it working it had to be done now. The thing with the eye is, the muscles and things behind the eye, don't just automatically work at birth. They "learn" how to work, thus why a newborn doesn't see well. If those muscles and such go too long without being used, they will never learn to work. So the transplant would need to be done asap so that those muscles would still have time to get off their lazy butts so to speak. Doing the transplant any time after the early months/few years of life, even if successful wouldn't work because the eye wouldn't know what to do. His recommendation was that since she had vision in her other eye, it was very risky to put her through the surgery, when it might not even be successful. Had she been blind in both eyes he would have recommended the surgery. We opted with the doctor.
I still always wonder if we made the right decision. Even if we had done the surgery I would probably still second guess myself.

We took our baby home that day and got on with our lives, and really have rarely looked back. Because of Kayleigh's limited vision she did not reach the milestones a baby is supposed to reach. She did great at her 6 month appointment, but at her 12 month she was way behind. This is where she began therapy, and also when she got her glasses. Therapy was such a blessing. The therapists were so sweet, they definitley eased the mind and fears of parents who had no clue what to do with their precious baby. She transitioned to wearing her glasses just fine. Within a week of having them she was wearing them from morning to night.

At one time she was seeing 4 different therapists at once, between the ages of 1 and 2. This time is where she struggled the most. She didn't walk until she was 21 months old. She certainly didn't jump, run, hop, climb or do those things like all the kids her age were doing. She was a sweet little girl. So good and obedient and so tender hearted. She was so easy to parent, aside from her developmental struggles, she was a breeze. After age 2 she really took off and we were down to 2 therapists. She was very smart. She learned all the academic things with ease. After age three she went from having therapy once a week to once a month, and at age six went to not needing therapy at all. She has thrived.

Life was/is mostly normal for her, and us. She goes once a year to see her pediatric opthamologist. She does all the things kids her age do. From an outsiders perspective, unless you saw her eye, you wouldn't know she had any issues. She has a few minor things that she might deal with here and there, but nothing she hasn't been able to handle with ease. Her birth defect is very visible, and for that we can do cosmetic contact lenses. We tried them a few years ago. They definitely worked, but the trauma of trying to get her to wear them was too much at the time. And a weird thing happened that day when those contacts were put into her eyes, and they looked normal.

I started crying, not out of happiness, but because with those contacts in, covering her birth defect that has caused us so much pain, it seemed like my daughter wasn't there any more. The defect, which I hate, is such a part of her that now without it, it's like she isn't herself. I kow that sounds weird and doesn't make any sense, it didn't to me either. But it has shaped the beautiful person she has become, that now when we try to change it, it seems like we are trying to change her, and I don't want to change her, she is perfect just like she is. I don't want her to feel like she needs to be changed or conformed to what we think is pretty in order to feel accepted or beautiful, and I think that is what made me cry the most. I know that those feelings of insecurity, awkwardness, and alienation are going to creep into her life soon with the coming of teenage years, and that breaks my heart for her.

I know the next 10 years of her life will probably be much harder than the first 8. I pray that with God she will gain the strength and peace to know that she is beautiful and doesn't need man's approval to feel worthy. I pray that we as her parents are able to mold and make her into the poised young lady who feels confident in who she is and is able to handle any challenges that come her way. I pray that God fills her with His love and she knows that those things, such as outward beauty, don't matter as much as we think they do and that she will gain an eternal Heavenly perspective on life and live each day to be beautiful for God.

I really don't mean to make everything sound trite or that everything is all hunky dory all the time. 99% of the time I have come to terms with it. Then sometimes those raw emotions of bitterness, resentfulness, helplessness and hopelessness pour over me and I weep for my daughter and what I feel can be a hard road. But I also know that I am so blessed, I have my daughter with me, she doesn't have leukemia, a tumor, isn't on a ventilator, some things that parents have had to deal with that are far greater challenges than anything we have to face. And I know that we are just fine.

There is a possiblity that what happened to her eyes can be degenerative, meaning it could get worse in her eye that has sight, with the possibility that it could progress so far that she could be blind in that eye as well. To be honest that possibility cripples me with fear. I have learned to put my trust in God and take it one day at a time. At the beginning it was one hour at at time. But you know what, we got through it! And I know that the person she is today and will become has been shaped by how fearfully and wonderfully made she is and for that I wouldn't change her for anything. Does that mean If I could would I miraculously make her better, of course I would. With that though is a two edged sword. I would never want to change her sweet spirit. So would changing what God has allowed in her life change her emtionally, I'm sure it would. But obviously that isn't what God's plan is for her. Whatever His plan is for her, I am so grateful that I am getting to be a part of it. And I just pray that I don't screw it up!

Sorry for the novel. To be honest here this is the first time I have talked in depth about what we went through, and I really could have written for hours more. I wrote this as much for me as anyone, and it felt good. I hope her story can bless someone or if it could bring someone to know Christ that would be the ultimate in a happy ending, because that is really what life is all about.