Everything is Going to be Fine

"Everything's going to be fine.
You have lots of doctor appointments in the future. Some day you may have surgery. Some day your condition may worsen. Some day you may find or develop another health problem. Some day you may have pain. Maybe you've already hit "some day".
I have felt your pain. I have felt your frustration. And sadness.
Everything's going to be fine. You are talented, intelligent, and beautiful. Your medical conditions pale under the light you hold within.
Doctors are bossy and narrow-minded. You are powerful. Demand what you need. Demand respect. Demand treatments that help your condition with minimal side effects or risks.
Everything's going to be fine.
Not because your body will become perfect. Not because you only have this "one" problem. Because you will rise to the challenge. Because you'll find this is not a "game" to win. You will have strengths, advantages, comforts and skills. You will accomplish great things. You will endure. You will love your defects as a part of your magnificent self.
Everything's going to be fine."  ~Amy Gashly, Unilateral Morning Glory Syndrome

 And everything is fine. Every day that passes I grow easier with the Bug's condition. Don't get me wrong, some days are harder than others, some days I want to do nothing more than cry all day and go to bed early, hoping the next day I will wake up and somehow it is all some sort of dream and everything is okay in the sense that it is normal. Instead, I wake up and feel that everything IS okay and everything IS normal. It is our normal. 

We fall into routines we don't even think about, a bib coming on means it is meal time, a washcloth in her hands means it is bath time, hands on the side means it is time to be picked up. It has begun to change the way I myself look at the world. I have become aware of things I would have never thought about before. The sounds of the motor on the refrigerator kicking on when the door is open, the different sounds the knobs for hot and cold water make, the cool temperature of silverware when pulled freshly from the door versus how it changes after it has been used over the course of a meal. Maybe, just maybe, we as people with full vision are the ones who are missing out on what the world has to offer.

Things aren't just okay. Things are fucking fantastic.

Down Syndrome, Maybe?

It's been hinted at more than once. Someone looks at my daughter and asks if she has Down Syndrome. The more it happens, the more I find myself starting to believe it. At first, it feels like they are just looking at her eyes and assuming because they drift up like they do that she has it. I'll admit, before we had an official diagnosis with MGS I thought it might have been Down Syndrome as well.  We brushed off all of her symptoms because we thought it was all related to her eyes, but as we approach her four month wellbaby visit with her pediatrician, I find myself bracing for the news that something else may be going on.

It started with a comment my mother made on Sunday. We skyped, as is our main way of communication so they can see and ooh and aah over their granddaughter. My mother didn't speak much for once. I attempted to get in contact with her for the rest of that day, and ended up touching bases with her the next morning. She knew why I was calling. I felt the same thing she saw. Something was off with Bug.  She was the first to say it.  Bug looked a little bit like a Downs baby.  She didn't have to say it, I knew I was thinking it.  It had been suggested before, but everyone brushed it off when they learned of her eye disorder, much like we all had, but it was different coming from my mother. Of course, she had mentioned it once before as well, but she also had decided it was all related to her eyes.

It has been mentioned before that Google is a dark friend to have. I found myself knee deep in symptoms of Down Syndrome yesterday. Do I see a Simian Crease, or are the three lines in her hand just bunched together? Is it sandal toe, or does she just have more control over her big toe than her small toes and separates it more easily from the rest of her toes?  Are her eyebrows similar to other children with Down Syndrome's eyebrows, or are they just her daddy's eyebrows?  The major scare on my mind is the fact her head is small. Her weight measured in the 75th percentile at her 2-month wellbaby visit, while her head was at the 26th percentile. I have heard they don't worry until it is in the 10th percentile or lower, but what about me? When should I as a mom worry?

So I get to send my husband in with a new concern to the pediatrician on Tuesday. He gets to hand over a list of things that have me worrying, and she'll be checked out. I'm scared to ask. I'm scared something is going to be wrong and she'll verify it. I know as far as getting her help is concerned, I need to know everything that is going on, but I also know I could be a lot happier pretending something isn't there.

I'm tired of being the strong mother who faces adversity and challenges with my daughter and meets them head on. I don't want to play this role anymore. I'm scared for my daughter.

L'Shana Tova (AKA In With the New Year, Out With the Old)

A message came up last week that made me stop and take note. The side scroller on Facebook had a comment I made last year on the day before Rosh Hashana, or the Jewish New Year (In case you did not know, I am Jewish).  I wrote "Hope the next year is better than this year". It also happened to be the day I got my big fat negative on a home pregnancy test, followed by the tell tale sign that there is no baby on the way that can not be mistake.   My husband and I had not been trying for a child, but we had thought there was a chance I might have been pregnant, and ended up getting rather excited over the prospect.  With the negative test I felt all my dreams of having a child disappear, and through that pain we made a decision that is definitely definable as life changing. We decided to actively try to conceive, and here I sit, a year later, watching the beginning of the year 5772 and recalling those feelings of anguish and despair alongside the feelings of elation that the new year brought when we made our decision and received the positive results the following month.   I stare at the status telling me of such heartache I felt last year, and part of me wants to laugh. Not because I had no idea what real heartache was, but because I had no idea what joy the next year would truly have in store for me.  I can dwell on the hardships that will come in this following year while we discover the full extent of my daughter's syndrome, or I can look forward to a year of enlightenment as she continues to show me how she can adapt to the world around her with her compromised vision. The ending of this year is no different than last, I limit myself to ten minutes of complete sadness every day, as well as hope at looking towards the new year as one of growth. The only thing that seems to have change is my perspective, and the realization of that is itself as life changing as a positive pregnancy test.

No hoping needed. This year is going to be certified bad ass.

What Did People Do Before the Internet?

Today I woke up to the normal routine of checking my email, once again.

Today, I received an email from Baby Center once again.

Today, I have hope.

Today, I feel like everything may not be perfect, but everything is going to be okay.

Today, I met another mother of daughter who has bilateral MGS.

To the beginning!  As I opened my daily Baby Center email, I saw I had a message from a person I had never heard of before.  It was another mother who had seen one of my posts about MGS on the babycenter forums and felt the need to send me a message. Before I knew it, I was directed to a Facebook group for people who are living with Morning Glory Syndrome, and still rock.  I was knee deep is posts from other parents like me who wanted to know that there was hope at the end of the tunnel, posts from people who were living with my daughter's condition and still thriving, posts that made me feel at home with a complete group of strangers. They were like me, my daughter, my husband, and they were all wearing the one in a million statistic like a badge of honor.

Today, for the first time since we have had this diagnosis, I feel like my husband and I aren't alone.

Today, I think I met an angel.

Adaptation

As I opened up my email this morning, I saw the usual mundane drabble that gets shipped to my inbox weekly, the stuff I usually click on delete before I even give it a second chance, but something caught my eye. I should have known better than to look at an email from Babycenter.com labeled "Your 2-month-old: Week 3".  Such emails are filled with all these fun milestones that "should" be happening with your child this week, and since they started talking about eye development, they have done nothing but cause me worry with how my daughter had been falling behind each week.  As I opened it up, the first thing it spoke of was how your child should be discovering her hands by looking at them intently. Great, another milestone she simply cannot reach because her hands are far too small of an object for her eyes to fully grasp, even if her eyesight is on the better side of the spectrum for MGDA. Once again, I deleted the email, sighed, and carried on with my morning.

Coffee, breastfeed, call to my mother to give me the strength to make it one more day, diaper change, allotted 10 minutes of self pity time for the day, singing time with Bug while flailing her arms and legs for her, another feed,  and putting her down for a nap.  It was somewhere in this mix of a morning schedule I had realized an interesting behavior in Bug that I had not really noticed before. Well, rephrase, I had noticed before but it was played off as something that babies just do.  She had her hands clasped together.  No, not just holding her own hands, but running her fingers over her fingers, pulling her hands apart, and repeating the same motion.  Moments like this usually would make me cry, but today I felt nothing but pride.  My daughter wasn't going to miss this milestone at all, she simply is going to figure out about her hands the only way she knows how.

Take that, weekly baby email. You aren't going to make me feel terrible about my child's lack of development this week.

Welcome to Holland

c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Preparing for Your Child's MRI

Nothing says goodmorning like a letter from the hospital for pre-MRI instructions for my daughter. She'll have her first MRI days after turning four months old. The first line says to not feed her after midnight. How Gremlins of them. I am quickly pointed out the exceptions to the rule are breastmilk, which is allowed up to 4 hours before the scheduled MRI, and Pedilyte/Water/Apple Juice up to 2 hours before. No metal straps on clothing or shoes, my mind immediately thinks of those educational videos about the terrors of wearing metal too close to the MRI machine.  It means I have to wait on getting her ears pierced, despite the tradition in my family to do the ears within the first three months. My daughter will have to be put under general anesthesia in order for them to get the scan, the thought of it all is just making me sick to my stomach.

There is a part to everything that is going unsaid.  I saw it in the Ophthalmologist's eyes when it was mentioned, I see the worry in my father-in-law's face whenever he sees my daughter. My sister-in-law has had a tumor in her brain since birth. Her specific disorder is called Juvenile Pilocytic Astrocytoma, or JPA, and manifested itself quite differently from my Bug's disorder, but once something like that happens in a family, and another child is born with any other sort of syndrome, the thoughts start forming, even if no one is vocalizing.

Quick, silver lining this thing.... I suppose if they thought there was something wrong and this wasn't a precautionary scan, they would have scheduled it sooner than a month and a half away, and we would have been sent to the pediatric neurologist. This does just seem like a covering their backs sort of scan, even the ophthalmologist didn't really seem that concerned about it, but the fact that it has to be done at all is unnerving. At four months old she should be starting to play with toys and lifting herself up off of mats at tummy time, rolling over perhaps, not going under for a scan of her brain.

Another huge silver lining is my mother is coming out from across the country in order to be with us for her MRI scan.   Whatever happens, she will be here to share in it all. We can either grieve or celebrate, but the important thing is I will have someone there to hold my hand, someone I look to for strength when all other options have been exhausted.  I hope and pray one day I will be able to be my daughter's rock like my mother has been mine.

Here's to waiting for a month and half for an MRI that may or may not come to anything. If I was not breastfeeding, I'd toast to it.