Shantel mentioned in Lucy's 2 month post that she had been having trouble seeing. Babies develop differently, so we were not so worried, but as she got a week and then two weeks older, you could tell Shantel was getting more worried.
Shantel: If I'm being completely honest, I felt that something was wrong at about 6 weeks. My biggest concern was that Lucy wouldn't look at me and often would be surprised if I quietly walked up to her and started talking to her. I felt my mother's-intuition saying "this is a big deal, there is something bigger at play here". I mentioned it to David a couple of times with increasing levels of concern - and then I asked my pediatrician about it at her two month appointment. Dr. Foster confirmed that something was probably up and he also mentioned seeing some horizontal eye movement/stutters. He didn't seem overly concerned, but enough to refer us to a Pediatric Ophthalmologist. I set an appointment for 6 weeks out and decided to just keep loving and praying while we waited for the appointment. I was concerned, but I didn't really know what to do about it.
Over the next little bit, Lucy's vision issues got increasingly more obvious and our concerns increased right along with it. The shaking of the eyes got worse and her eyes started wandering all over, never really stopping, and never focusing on anything. My dad came down to help us with our basement and when he was talking to Luce, trying to get her to look up at him, he suddenly stopped and looked at me asking "Does she see very well? Can she see me?" I had already been planning to ask him to help David give her a blessing, but knowing that he noticed without me mentioning it made it clear that it was more than just my hyperactive mom-radar.
So this takes us to September 1st. It was just after the pediatric visit and Shantel was getting more worried. It was fast Sunday and we decided that we would be fasting for Lucy. As I did, I felt such incredible peace that everything would be okay and particularly, the Heavenly Father was aware of Lucy and her situation. Shantel asked if I would give Lucy a blessing. I decided that since Scott was coming down on Monday (Memorial Day), that I would ask him to help me with giving her a blessing. That afternoon we gave her a blessing. Specifically I blessed her that her vision would improve, and her brain would continue to develop the way that it should. I felt peaceful, but obviously still uncertain about what was to come. Especially with her getting older, it was clear that she could see and respond to bright light, but that she did not really focus/see or respond to anything else.
After my Dads visit, my mom called me and asked if she could come down and stay because she wanted to see Lucy and be with me. We hadn't really mentioned our concerns to anyone, other than offhandedly to David's parents who had been coming to help finish our basement. But my mom came that Friday and was pretty worried. Lucy wouldn't track anything, wouldn't focus, and her eyes were wandering without ever resting unless she was almost asleep. (I also wondered if that's one of the reasons she still sleeps so much, because trying to see/focus is exhausting to her.) My mom encouraged me (strongly) to call the Ophthalmologist and demand to be sooner than six weeks. "It's not just a routine checkup!" She said, "Something is wrong - you tell them that something is wrong with your baby and that you need to be seen ASAP!" This heightened my concern, because I'd been telling myself that everything was really okay (even though I had been feeling in my gut that something was off). So I called to reschedule. The nurse went through the entire Saratoga Springs schedule with no openings, and then went through the entire Orem office with no openings. But then suddenly she said "Wait! Wait a minute, can you hold?" Then came back on the line and said "Wow. We actually have an opening for Tuesday morning of next week. Can you make that work?" When I confirmed, she said "I can hardly believe it, It's a miracle. We never have openings so soon that don't get filled by our cancellation list." As I got off the phone with her, I distinctly remember thinkings "Wait! I don't want a miracle. I mean, I don't want to need a miracle to get her in sooner than the six weeks." I'd rather just wait my six weeks and go in and find out that everything is fine. I've since repented of that, because I will take all of the miracles that I can get on behalf of this little girl.
Shantel's Mom came back down the next Tuesday to watch the kids so that Shantel and I could go to the appointment. All week we had both been feeling that everything would be okay and feeling very peaceful. But not that nothing was wrong or that there might not be hard things coming, just in the kind of peace that comes from the spirit. We were both a little bit nervous headed to the appointment and did not know quite what to expect. When the doctor came in he asked a few questions and then started looking at her eyes. As he examined her you could tell that he did not really like what he was seeing. He kind of was saying hmm... and then asked for some things from another room. Lucy did not really respond to any of the things that he was doing or showing her. After a few minutes he told us that he wanted to dilate her eyes and examine a little bit more, but that he felt fairly sure that she has Nystagmus and Albinism. In truth- these are things I had never heard of and I did not even understand the words coming out of his mouth. He said he would discuss these more after he looked at her eyes and was more sure of the diagnosis. They dilated her eyes and then Shantel and I went out to the car to change her diaper and start to soak things in. We came back 30 minutes later and he finished examining her. Based on that, his diagnosis is that she has Nystagmus and Albinism.
I'll probably save the details on what those mean for a separate post and focus here instead of what it means and what we feel.
He said that both can cause a range of vision loss from severe (legally blind) to not severe (can wear glasses and drive and live fairly normally). Nystagmus is an eye condition (shaking of the eyes) and Albinism is a genetic disorder. He said that there is no treatment for either condition that can improve them. He said that because she is so young, he did not really want to give us his opinion on where she will fall within the range on her vision. At 6 months, he'll be able to tell better where she falls. It also sounded like vision will typically decline, or at least vary, until about 6 months and then stabilize wherever it is. He said it would be a miracle to see any drastic improvement.
It was so much to take in at that moment. I did not know what to expect, but hearing that Lucy may not be able to really see, and that she may not ever be able to see...it was a lot to take in. I was able to stay fairly composed so that we could ask a few questions. The doctor kept asking if we had anyone in our family with Albinism because it is genetic, but we really don't. I have never heard of Nystagmus and asked him to write the names down so we would even know how to search for them. We discussed various things that could be done now, but since they don't improve vision (only confirm diagnosis) we decided not to do anything. Basically we go back in 3 months when she is 6 months old. Until then, we can only wait and pray.
So, now we are praying for a miracle. As soon as I heard the doctor say "It would be a miracle if there was significant improvement" I was reminded of my earlier lapse when I thought that I didn't want a miracle. I do want a miracle, desperately. Specifically, that our Lucy Holland's eyes will improve over the next three months and that the impact that her conditions will have will be small. I have felt so much comfort and peace from Heaven. I feel a small voice whispering that this is part of her journey here on earth. I wouldn't feel good about praying and asking for these things to be taken completely away, because I feel like they are integrally a part of Lucy's life and that she (and us) will be better because of them. But I do believe that prayers make a difference, and that a group of people faithfully praying for the same thing has power to change a persons life. And if that life can be that Lucy is less impacted throughout, that is what I will pray for.
That day, and the next few days were fairly emotional. The sadness would come in waves, thinking of all of the what-ifs but through it all we felt an underlying peace about Lucy, her life, and her place in our life. We reached out to friends and family and we met with overwhelming love and support.
We didn't have answers to very many of their questions, the doctor had given us a few small bits of information, but mostly just gave us a website to get more info. It wasn't very helpful, especially because we don't really know where Lucy falls in the range of things. (My mama-intuition tells me that she is on the more severe side of things, the inflection of the doctor and just my own experiences with her.) However, I am so grateful for the love and prayers of those around us on her (and our) behalf. I feel like we've been buoyed up to the point the I can truly say that it doesn't really matter what happens in 3 months - whatever the plan that Heavenly Father has for Lucy, we know that it will be the best thing for her. We know she was sent to us for a reason, and we are just so grateful that we have the resources and the support to help her get all of the help she could ever need!
Describing it in waves is the best word. Especially that first day. It was so much to take in and then you would think about it and this wave of emotion would come. To love Lucy so much and feel this worry, you just feel it so deeply in your heart. We drove towards home, but stopped at the church for a few minutes first because we just were not ready to go home yet. I think the idea of talking to other people about it and telling people would make it more real. However, I truly was filled with peace. It was the same peace from before, that Heavenly Father is aware of Lucy and our family. A few days later someone was asking me about Lucy and her conditions and asked what Lucy can see. Honestly, we don't really know. However, she really has not shown any indication that she can see anything. Shantel would come up close quietly, right up to her eyes, and then as soon as she would start talking, Lucy would realize, "hey, my Mama is here." That night we started asking Heavenly Father for a miracle. We believe in the power of prayer and miracles and we need a miracle that Lucy's vision will improve.
We are mostly back to normal life now. It's funny, because in some ways it feels like everything has changed - or that everything should have changed. But really, Lucy just needs held, fed, and loved. The other kids still need food to eat, homeschool taught, and time to ride bikes with the neighbor kids. Life just moves forward and I think that's a good thing. We will wait and we will pray and we will keep going with the things that make up the rest of our life.
David and I were discussing things one night and as part of our conversation, we talked about how this does nothing but make us recommit to making our home one of love and faith. We will be faithful through whatever difficulties come. We will teach our children to rely on prayer and faith, and to have confidence that there are loving parents in heaven who are on our side even when we have hard things in our life (especially when we have hard things in our life). That is one of the reasons we are writing this blog out tonight, because we want our kids to know that when faced with an uncertain future and an unknown challenge - we choose to be faithful. We choose to pray. We choose to follow God. We feel His loving arms wrapping around our family and His spirit filling our home.
In our discussion we talked about faith and hope. We decided that we would pray for a miracle, because we believe that God can and does provide miracles. I connect so much with the story of Shadrach, Meshach and Abed-nego. They did not pray hoping that God would save them, except maybe he would not because we don't always get what we want, or God has other plans. They said with certainty, God will deliver us. Then only after declaring the certainty that God will deliver them, did they acknowledge, "but if not." That is how I feel. Often I feel that in our day we don't see miracles, because we limit what God can do, but not truly believing that he is a God of miracles and will do miracles in our lives. We don't want to limit God, we want to pray with the faith to know that God will heal her. He will improve her vision. But if he does not, we will follow God's will and know that it is for our good. Having trials is not something to get through in life, it is what helps shape you into who you are.
I have felt so much recently that we often "curse the Lord for our blessings." I have experienced this where something happens and I am upset because of it, only to realize an hour or a day or a month later, that it turned out to be for my good. I believe trials and challenges are the same. We may not understand why a particular trial or challenge has come upon us. However, we can always remember that Heavenly Father loves us, and has not forgotten us. Sometimes that trial may turn out to be what that person or family needs. Other times, it is part of the refining fire that shapes who we are. Always, those trials are there to help us understand our reliance on God. To turn to him and understand how much we need him.
We decided that we will pray for a miracle. We will also treat this as something that is there to shape us towards Christ. We will build a fortress of faith within our home. We talked about how important the next ten years will be in shaping our children's faith and testimony. These ten years are the vital time we have and we will give our best effort to our children, even when it is challenging.
Given the nature of the diseases, life really has gone back to normal. There is nothing different we need to do to take care of Lucy right now. However, we are praying for these three months, with all our heart and all our faith and Lucy's behalf. We truly have felt God's love and peace and it is real. He is there, he knows us and he loves us.
I am so grateful for Lucy. She is so sweet. I am also so grateful for Shantel. I am lucky, that no matter the challenge, I want to meet it with her. We have such good children, who love Lucy and each other.
No comments:
Post a Comment