Syndrome

My Daughter has Morning Glory Disc Anomaly, or Morning Glory Syndrome.

First post here, and wow. I just wrote for the first time that my baby has a syndrome . It still feels so surreal at the moment.  To verbalize, to admit it. I keep just saying that it is Morning Glory Disc Anomaly, it sounds less than it is. It was even nice of them to name it something like Morning Glory, it has a nice ring to it. It's like having cherry flavored sucker but coloring it blue because I hate the color red.. I actually love the color red, just a tangent.

It's not like I'm surprised something is wrong. People said I was overreacting, my favorite thing my mother told me was "Stop seeing Kiwi's. You go outside and you see Kiwi birds, but all they really are are sparrows."  I've been seeing Kiwi's since she was 2 days old. Never doubt that mother's intuition... Part of me wants to scream at the doctor, I told her I thought something was wrong at the two week check up, I had another phone call appointment around the five week mark where I voiced concerns again. It wasn't until her two month check up that she said "Oh wait, something is wrong" and sent me to a specialist. Would it have changed anything if I had known sooner? Probably not, but I would have had to stress over not knowing for a few weeks less. I can see it in my face. Every day I went not knowing what was wrong with my baby, it looked like I was aging years. To finally know what is wrong is in its own way a complete weight off of my shoulders. On the other hand, it makes my heart ache to know that something is in fact not as it should be.

So what can we do now? For her, absolutely nothing. Unfortunately there is no treatment, she simply gets to go through life only seeing colors and shapes. If she is lucky, she may be able to read large print. For us, we learn to adapt. We make the house safe to have a baby crawling around that can't see as well as other "normal" babies. Normal... What is normal anyways? This is her normal.  The first person that says anything about her not being normal gets punched in the face.

At least she can still hear. She can still learn to play instruments, I've always called her my little rockstar.  If she can't read with her eyes, there is always brail. At least she is healthy, at least she is alive, at least my husband is still by my side and our relationship is stronger than ever, at least she wasn't born decades ago when special needs children weren't even taken out into the sunlight, at least I have had plenty of experience with special needs children working for the school district, at least her father grew up with a sister who had special needs and this is his normal.  Is this the end of the world? Far from it. As far as I know, right now this is the beginning of a new adventure for Will and I.  She's already been on it since she was born, maybe she'll be able to show us the ropes.