As I started this blog there was this grand plan of accomplishing various projects and goals for the new year after the horrific 2014 I experienced. However, as some may notice that has not been the case. I have fallen in the pit of doom known as “life.” I do not say this to say that this year sucks already. On the contrary…this year has been amazing for the simple fact that my little boy, Marshall, has filled my heart after the void left by the passing of my mother last year. I can’t explain it. He gives me peace like no other. This little boy is why I delayed blogging further. Aside from him needing me constantly, my husband and I have been dealing with our little one’s current problems…his vision.
In early February I took Marshall to the pediatrician for fear that he had caught a cold that was going around. What happened next has been life altering. While Marshall did not have a cold, the pediatrician, who is wonderful, grew concerned about Marshall’s vision. This caught me off guard. My little boy was only 2 months old. How could anything be wrong with him? We were sent to the only pediatric ophthalmologist around us for further consultation on the same day. So here I am. A bundle of nerves. Worried sick about my little one. When we get to the ophthalmologist’s office we were greeted with a lack of kindness and understanding with a side diagnosis of Marshall having cataracts and other possible vision problems including something known as Persisten Hyperplastic Primary Vitreious (PHPV). Instead of informing us further about the vision concerns the ophthalmologist simply handed me a tissue, since I was crying my eyes out, and told us we could go now. Aside from the day my mother died this was by far the worst day I had ever had. My perfect little boy could possibly be blind is what we were told.
One thing the ophthalmologist did right was to refer us to the WVU Eye Institute in Morgantown, WV for further tests including an ultrasound on Marshall’s eyes to test for the PHPV diagnosis. Luckily we didn’t have to wait long to go which was great news because my husband and I made ourselves sick by looking up the outlook for this disease. When we arrived I was terrified of what we would find out. I was quickly reassured as Marshall was seen and we were told immediately he did NOT have PHPV. Never have I felt a weight lift off of my chest like I did in that moment…however…we were not out of the woods. Marshall’s new ophthalmologist diagnosed Marshall with Microphthalmia, or Small Eye Syndrome. This diagnosis was made because Marshall’s corneas measure at 7mm when they should be 9 or 10. Approximately 2mm stood in between Marshall and this diagnosis. The next questions that arose were what does this mean for Marshall developmentally and the honest answer we were given was…”I don’t know.” Typically this disorder is simply a symptom of another underlying cause which is why the next step of Marshall’s treatment was an MRI to see the brain development and how well the optic nerve has matured behind the eye. So here we were again with wonders of what could be wrong with our little one. All we could do was sit back and wait for an MRI to be scheduled and then come and see the ophthalmologist for further evaluation.
If anyone has experienced an MRI it is safe to say they can be a traumatic experience. With Marshall’s age the decision was made to put him under which terrified me. It was also heartbreaking not being able to feed my little one until the procedure was over. It was simply exhausting. In the end, Marshall did remarkably well and the next day the ophthalmologist called us with the results…Marshall’s MRI came back clean. Our little boy was perfect…except for his vision. So what we were left with was a diagnosis of a mild form of Microphthalmia with the monkey wrench in the condition being the presence of partial cataracts in both eyes. The important thing we could do was to make sure that Marshall stayed engaged and learned to interact and grow. Only time would tell how his vision was.
This leads me to today as we went back to the ophthalmologist for further evaluation. Marshall’s lenses “appeared” to be more cloudy which baffled him because he could tell that Marshall has become more attentive in focusing and looking around. So, I come writing this with mixed emotions. I would love to say that Marshall has perfect vision but I would be lying. The truth is I don’t know what he sees and how well. What I do know is that he CAN see and coming from the beginning that he would be blind I will take this news. The plan is to come back in three months to see him again and make a decision on whether cataract removal is necessary at this time. I love the fact that Marshall’s new ophthalmologist is not jumping the gun on surgery. Research states that babies with full cataract have surgery immediately. In Marshall’s case with partial cataracts it is a wait and see in order to reduce his chances of having other eye problems as a result of the surgery like glaucoma.
I wanted to share Marshall’s story here for all of the parents out there who are going through something similar with their little ones. There is no worse feeling than to think that our children will not be “normal” as they grow older. What I have learned is that technology is a wonderful thing. I know that if Marshall’s vision is not the best there are so many avenues that will help him lead as normal of a life as he should have. Besides, who wants normalcy anyway? Going to the Eye Institute I have witnessed some resilient and spunky kids with their exhausted parents right there supporting them.
We learn to take it one day at a time. Life is far too short to live in fear. From all of this I have discovered so much about not only how strong and intelligent Marshall already is but also how strong my husband and I are, both as individuals and also as a couple. This experience has strengthened our marriage and has helped us become even better parents…at least I think so. I see the importance of keeping a child engaged no matter what age they are. I see the importance of talking nonstop to Marshall. I see the importance of holding and cuddling him as much as possible and as a result I get to experience him looking directly at me and putting his hands on my face. To truly experience that in fact my little one sees me is simply amazing.
We go back in July but until then we just keep doing what we’re doing. It works. Parents, it’s tough but our little ones are resilient and I believe stronger than we are. They are smart so let’s have them experience the world around them. Let’s not live in fear. Let’s embrace the unknown and place our faith in who we must.