I'm probably not in the best frame of mind to write this post, but I need to do it so that some day in the far future when my son asks me, "what did you think when you found out that I'm going blind" I can be as honest and forthright as possible.
First, the back story.
When Noah was about 2 years old, James and I felt very strongly that it was time to bring another child into our family. I had some complications with Noah which left us worried that bringing another baby into the world might not be as easy as it had before, but we felt like it was a righteous desire and in line with what Heavenly Father wanted us to do so He would make it possible. For three years we tried on and off unsuccessfully to get pregnant. I lost faith. I told myself that our problems were a sign that we weren't supposed to have another child, especially since there was a good chance that child would have the same retinal disorder as our other children. We gave up and stopped trying for a long time. But eventually we were humbled enough to admit that our pride was holding us back from whatever blessings and plans Heavenly Father had for us, whether they involved expanding our family or not. We went through fertility testing and found that because of my issues from previous pregnancies, coupled with issues from James, it was probable that we/d never get pregnant again. Oddly, James and I found comfort in this news. It seemed to be a long sought after answer to prayer, and we decided to be happy and complete with the two children we were blessed with.
And yet, I cannot tell you how many times I would be in my home just performing some mundane task when I felt so strongly that someone was watching me or with me. Without telling James, I prayed over and over to Heavenly Father, promising Him anything and everything if we could just have another child. I promised to not fret over weight gain while pregnant; that unlike my other two pregnancies I would take care of myself and enjoy that process of creating another being. I told Him that I would accept any handicap, disease, disability a child could have willingly. Most importantly, I told Him that I could and would love and accept another child who would be blind, and trust in Him that all would be fine and that there was a greater purpose and plan behind that disease. I felt like I was truly willing to give everything I had, all my faith and more, to trust in Heavenly Father's plan.
It's obvious by the fact that I have three kids instead of two that Heavenly Father heard our prayers and at the right time- His time- we were blessed with our Zachary. The last 5 years have been a whirlwind with Zach. From the trauma of his first few days of life to his unshakable stubbornness and fierce independence, I always thought those would be his challenges to overcome and it has never once entered into my mind that Zach might have RP. But to fulfill due diligence, we decided to have him tested to rule it out. As I stated, I felt it was just a formality so I put it off as long as possible. Fortunately, my good husband was much more in tune with the Spirit and pursued the testing sooner rather than later.
Today Zach spent 4 hours at the Moran Eye Center with Dr. Hartnett. I must begin by saying how incredibly blessed we feel to have been led to Dr. H. We have fought with our insurance company for almost 8 months to get her as an approved provider. She is the only pediatric retinal specialist in the West, and the only Dr. really qualified at Moran to diagnose RP so early. With this knowledge, James went to war with the insurance and two weeks ago got the approval (another incredible blessing). Zach was first seen by a technician who noted that his acuity was 20/60, but that it was not uncommon for a child that young to fail the test. Next we saw Dr. H's resident who did a more thorough exam of the retina. She finished and began telling us about all the tests Dr. H would want to run and setting up further genetic testing. It seemed she was beating around the bush so she didn't have to say what she had observed or concluded from the exam. Although I knew she probably had to defer diagnosis to the senior physician, I decided to be blunt and ask her if she was seeing mottling in his retina. Without going into a complicated description, mottling of the retina is the only was to visually diagnose RP without genetic testing. She was surprised that I knew this, although after dealing with Noah for 6 years I think I'd be a dummy to not. She said that she did see mottling consistent with RP. The minutes she affirmed my assumption, I lost it. Not crying. weeping or whaling losing it, but I couldn't force the tears back from my eyes. I'm pretty sure I say "oh crap". James was very quiet. Then this young doctor did the most amazing thing. Her eyes welled up with tears and she said "I am so sorry". I imagine these doctors have to give bad news to dozens of patients everyday. It must be so emotionally exhausting, and I've always understood that as the reason most try to be very objective and composed in front of their patients. Her empathy in that moment was so unexpected and so appreciated. I love the Moran Eye Center. Everyone there is so kind and so compassionate. They are unsung heroes.
Dr. Hartnett came in after to confirm the diagnosis and offer all the help and support she could give. She has a bevy of tests that will need to be run on Zach to get his baseline numbers, but she was so understanding of his age and the trauma that going under anesthesia would cause. She kindly offered to wait for a year until most of them can be performed without any poking, prodding or being put out. She offered to put us in contact with RP parents groups, social workers for rehab, anything we need. On the spot she wrote us a letter to the school district confirming the diagnosis and authorizing the use of all her resources and asking them to do them same. She requested 3 different kinds of retinal photos which we were then able to compare to Noah's at the same age. It was amazing to see how similar they looked. I am so grateful for the technology that will help us follow the progression of the disease. I'm grateful for a doctor who had empathy, who told us she wished she had a magic pill that would make this disease go away, but that she had great faith in science and technology and that they would find a treatment someday.
On our way home I called Lacy, Noah's vision specialist and braille instructor, to apprise her of the situation. True to form, she was on the job within minutes of our call. By the time we reached her school to drop off the letter from Dr. H, Lacy had called her boss Karla and they had started the IEP process and had the forms waiting in the office for me to fill out. In all this, I am so overwhelmingly grateful that Zach was diagnosed before he enters Kindergarten in the fall. He will be able to learn to read in print and Braille concurrently, with each form aiding and assisting the other. Noah started Braille in the first grade after he was already reading, so his print efficiency has always been so much higher than his Braille and they are trying really hard to bring his tactile reading up to the same reading level as his print literacy. Zach will not have that problem. He will learn both at the same time.
In all this I have forgotten to tell you what a rock star my son is. Zach was perfect the entire time. He was obedient, helpful, funny..... he charmed the pants off of all the ladies in the office. He has no clue what's going on and I don't think we'll explain too much until he's older and can understand the situation. Right now we just told him that his eyes are sick and he was good with that. James and I are, well, not exactly okay but made it through today. We held it together until we were in the car on the way home. James was overcome when he called his mom to tell her the news, then later as he sent an email out to all of our siblings. I feel so bad that my crummy genetics have caused this. I know that this is Heavenly Father's plan for my boys, and they are strong enough to face this challenge. I also know that without a doubt how they view themselves and their capability rests 100% on how we teach them to look at themselves, and how they face this disease. If we feel sorry for them and allow them to us blindness as an excuse for not trying, they'll never be successful. But if we tell them they can be anything and do anything they want to, they'll find a way. They are learning Braille now so that they'll be successful, literate adults. They are training in braille and low vision technology that will make them able to work in their chosen fields. They are going to go to college and study whatever they have a passion for, and they'll make careers out of it as blind adults because they will be prepared for what is coming.
One more note that I cannot forget. Much is said of the purity and completeness of a parent's love, but second to this is the love of a sibling. When we dropped off the paper's to Lacy, it was close to the end of school so we decided to check out Noah. As he was at recess I went in search of him on the playground. The minute he saw my face he started crying. He cried "oh no, why Zach? Why does my brother have to have this disease. It's not fair." All his questions were valid, but what struck me as so amazing was that never once did Noah ask why WE. His only concern was for his brother, and he was brokenhearted that his brother was going to have to face RP. What an incredible child. He has wisdom and compassion far beyond his 11 years. After he had composed himself, Noah started formulating a plan to teach Zach the Braille alphabet over the summer so that by the time he started formal training in the fall he'd be ahead of schedule. Zach could not have a better or more loving brother. His sister was pretty worried too. Taylor spent a miserable day at school after I texted her from the Dr. office with the results. Her misery was written all over her face when she came in from school. She is so hurt, and so worried about both her brothers.
It has been such a long day with so many tears. Right now I feel numb, just like I did after Noah was diagnosed. James gets all his tears and anger out the first few days, but I stow it away so inevitably it pops up at the oddest and most inopportune times. It's surreal: I am going to have two blind sons with moderate to profound hearing loss. Is this really my life?