Ellie Marie at 12 hours old.
For approximately nine months you visualize what your baby will be like. Which parent will they resemble the most (obviously Andrew), what types of things they will enjoy, what it will be like for her to marry, will she be a Longhorn or a Fighting Quaker, and will she grow up being close friends with Grace.
Then a miraculous thing called birth happens and out pops this most beautiful being you have ever seen. Her first cry is a miracle. You call the family and tell them the joyous news. Then you start to worry. How can I take care of this tiny being? What if I drop her? What if her head flops?
After that, you hear what you suspected. "I think your daughter has Down Syndrome". Whoosh! Just like that you start thinking about all of the things that are associated with Down Syndrome. The heart issues, the mental retardation, people staring at your child. Then you feel horrible that your little girl must endure so many medical tests. You want to take that pain for them. Then you make those phones calls of "We have a baby girl! But, she has Down Syndrome". Just like that everything you thought about for the previous 9 months starts to disappear. You celebrate the child you have, but you mourn for the idea of the child that never existed.
Ellie is 4 months old now. She is a wonder and beautiful baby. However sometimes thoughts/emotions hit me like a truck. It completely catches me off guard. I see a child Ellie's age in Target and I think "why did that family get the normal child?" I do not even know this family or what troubles they have. I see families with multiple kids--how come all of theirs are "normal" and my one & only child has Down Syndrome? I see how wonderful and smart Ellie is and then I think about what would she have been like without that extra chromosome? Well, I do know this: She would not be Ellie. She would not be the Ellie that we all know and love.
I know that these thoughts are normal. . .well at least people have told me so. Do not think that I love Ellie less due to Down Syndrome. I love her all the more. My little baby is a miracle who has brought so much joy to me, Andrew, my family, and friends. She is a blessing from above. She is brave and endures those painful & frequent medical tests/visits like a champ. She is a happy, "talkative" baby with a smile that lights up her entire face. I would not trade her for anything and yet, I still sometimes feel like shouting "It was not supposed to be this way!" Actually, it is supposed to be this way.
Dedicated to Ellie (to the music of Sandra Boynton's Snuggle Puppy lyrics modified):
Well, I want just to tell you and will not take long.
The way I feel about you is kind of a song.
It starts with an "oooh"
And it ends with a kiss (smooch)
All along the middle it goes something like this.
Oooh, Ellie Bear of mine.
Everything about you is especially fine.
I love who you are.
I love what you do.
A snuggle little Ellie Bear-Bear I love you.
I say ooh, Ellie Bear of mine.
Everything about you is especially fine.
I love who you are.
I love what you do.
A snuggle little Ellie Bear-Bear I love you.
Well, I wanted just to tell you and it didn't take long.
The way I feel about you is kind of a song.
I started with an "oooh"
And I gave you a kiss (smooch)
I hope you liked the middle
Now we'll end like this.
Oooh, Ellie Bear of mine.
Everything about you is especially fine.
I love who you are.
I love what you do.
A snuggle little Ellie Bear-Bear I love you.
Ooh, I love you. (smooch)
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