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.
Tuesday, September 27, 2011
Thursday, September 22, 2011
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.
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.
Tuesday, September 20, 2011
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.
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.
Monday, September 19, 2011
Morning Glory Disc Anomaly for Dummies (AKA Me)
I'll be the first to admit it, I am a chronic Google-er. If I have symptoms of a common cold, before even thinking to call an advice nurse or even just compare symptoms with a sick coworker who more than likely passed me the illness in the first place, I will first Google everything and convince myself I am dieing of cancer. My mother had promised me the minute I found out about my daughter's syndrome she would first break ground on the Google-verse to see if there was anything that was going to devastate me. This prevented me from Googling MGDA until we were out of the parking structure, but the very core of my being refused to let me get away with ignoring it for long.
It's a blessing in its own way. If you google Morning Glory Disc Anomaly, you get a wikipedia article, a link to the Children's Hospital in LA, and a whole bunch of abstracts. I know what an abstract is, I see abstract and I immediately think "Here is a dumbed down version of an article that you would have no chance in hell of understanding, for your convenience, of course." I hardly even bother when I read the word abstract anymore after being thoroughly lost three words into the first one. So much for me understanding. For right now, I know MGDA is an issue with her retina and how it is attached to her optic nerve. When looking at her retina, the ophthalmologist saw what resembled a morning glory. From what I understand, IE what the almighty Wikipedia has told me and what a family optometrist said, MGDA is incredibly rare, something like one in every one to three million people in America. If you go to the March of Dimes website, it isn't even listed under congenital eye defects. Despite the rarity of it, the morning glory is distinct enough a specialized pediatric ophthalmologist who may have not even seen a case before was able to recognize it off the bat. Despite how rare the specific type of optic nerve anomaly is, optic nerve damage itself is much more common. This just falls into a much more specific category of optic nerve damage. I keep comparing it to a chromosomal disorder, there are more chromosomal disorders than a person can count, though many seem to manifest themselves in similar fashions to the untrained eye. I still don't quite understand what makes MGDA so unique from all the rest, except that is might be a little prettier to look at when under the close eye of a specialist.
At least the name sounds pretty..
It's a blessing in its own way. If you google Morning Glory Disc Anomaly, you get a wikipedia article, a link to the Children's Hospital in LA, and a whole bunch of abstracts. I know what an abstract is, I see abstract and I immediately think "Here is a dumbed down version of an article that you would have no chance in hell of understanding, for your convenience, of course." I hardly even bother when I read the word abstract anymore after being thoroughly lost three words into the first one. So much for me understanding. For right now, I know MGDA is an issue with her retina and how it is attached to her optic nerve. When looking at her retina, the ophthalmologist saw what resembled a morning glory. From what I understand, IE what the almighty Wikipedia has told me and what a family optometrist said, MGDA is incredibly rare, something like one in every one to three million people in America. If you go to the March of Dimes website, it isn't even listed under congenital eye defects. Despite the rarity of it, the morning glory is distinct enough a specialized pediatric ophthalmologist who may have not even seen a case before was able to recognize it off the bat. Despite how rare the specific type of optic nerve anomaly is, optic nerve damage itself is much more common. This just falls into a much more specific category of optic nerve damage. I keep comparing it to a chromosomal disorder, there are more chromosomal disorders than a person can count, though many seem to manifest themselves in similar fashions to the untrained eye. I still don't quite understand what makes MGDA so unique from all the rest, except that is might be a little prettier to look at when under the close eye of a specialist.
At least the name sounds pretty..
Tuesday, September 13, 2011
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.
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.
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