There are countless reasons to start a blog, but this one in particular I hope to use as a way to show off my little angel, to vent about the frustrations of being a new mom, and to record her progress for other parent's of babies with Down Syndrome to read, learn, and maybe hopefully help.
Let me start by saying it is definitely hard news to hear your baby has ANY kind of abnormality. You create this picture perfect baby in your head and when you receive the news, trust me I know, it feels like a punch to the gut. You feel alone, insecure in your capabilities of being a mother (or father), afraid for her health and future and for your own (after all, I am only 23), angry and wondering "Why did this happen to me?". I can't help you with those feelings, nor can I tell you they will go away. I'm at the beginning of this journey myself and I'm still having trouble grasping the concept. But what I can tell you is it's not the end of the world. I'm still here, I still have my loving husband and all my supportive family members and you know what else? I have a beautiful baby girl whom at the moment, is just like any other baby. She makes silly faces, she eats, she poops, and she sleeps. She's got daddy and all the grandpas wrapped around her tiny fingers and I doubt that is likely to change.
So, for my first lesson I've learned:
Lesson #1 : Ignore the statistics, Keep the Advice
Congratulations! You have a new baby and if you're reading this, he/she probably has Down Syndrome. Now comes all the doctor's visits. You'll hear all kinds of statistics at these appointments, including the following:
1 in every 700 babies are born with DS.
40% will have heart defects.
25-35% will have thyroid defects.
1 in a 100 will get Leukemia
and there were probably more I can't remember....
These most likely did not make you feel better. But what if I told you only 1 in 5 babies with chromosomal defects even make it to birth? This was the one statistic that made me go from feeling like the most unlucky girl in the world to winning the lottery. I have a baby, a baby I can hold and love. I'm one of the 20% to get this feeling. I hope that makes you feel a little better, like it did for me. Sometimes when I'm feeling down, I revert back to this one statistic.
I'm telling you to ignore these things because they are just numbers! What if we all lived our lives by statistics?
We'd all be afraid to get up in the morning, to touch anything, and we would all become hypochondriacs. Ignore the stats! You'll thank me.
::Giselle does in fact have a small hole in her heart and it looks as though she is closing it on her own. Her thyroid checks out fine and we will be rechecking in about 6 months::
KEEPING THE ADVICE
Here are some of the best advice I've heard.
Enjoy your new baby. Do not jump into all the associations, the facts, the brochures, the schools, the therapy, anything. That stuff will be there in a couple of months for you to start looking into. Just take the time to enjoy your newborn as if she were any other child.
Make sure you provide your child with every possible opportunity. Make sure that your child is only the limited by their condition, not because you never gave them the chance. Give them a conductive, loving environment to live in. So many parents neglect and don't even try to raise their kids with any sort of expectations just because they have Down Syndrome. It's hard to tell if those kids ever reached their potential. Here is a really good article about this.
http://www.about-down-syndrome.com/einstein-syndrome.html
This concludes my very long opening. My blogs are going to be much more personal, like a diary. I hope this helps and I can't wait to share our adventures with the world.
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