As we celebrated our daughter's return home following surgery (she had skull surgery due to a condition called craniosyntosis), we looked forward to finding out whether we would be having a niece or nephew in September. My BIL and SIL would be finding out the gender of their baby and we were pumped.
What came next was a shock to say the least.
My phone rang, caller ID said it was my SIL. I answered the phone, "So boy or girl?" She said, "Girl." I said, "Oh, I totally had my money on boy." LONG PAUSE. "I'm just kidding...I'm thrilled! Are you still there?"
The news that followed was a shock. The baby had soft markers indicating Down Syndrome. The baby has a heart condition that will more than likely require surgery to correct. My heart sank. No... not another hospital stay.
The questions start.
Is this for sure. Are they confident?
When will she need surgery?
What does that mean for her long term?
What exactly does Down Syndrome mean for the baby? For you guys?
I didn't ask all those questions of course. I'm sure my SIL had all of these and more running thru her head. Instead I went into supportive mode.
I've got a friend whose son had heart surgery as an infant. I can ask her about her surgical team. We will find the best surgeon and go from there. They can fix it.
The amnio came back. Results are conclusive. EKG shows a heart valve defect. She will need surgery around 6 weeks of age.
I act supportive.
They are waiting 6 weeks. That is good. But in my head I know they don't like to put little tiny babies under unless absolutely necessary. My daughter's surgery waited until she was 6 months to get her to a nicer stable weight. I don't say that to them. I focus on the fact that they are giving her 6 weeks to bulk up.
What does this mean for their marriage? We all worry about how this will affect them. Will they be able to handle the stresses of a special needs baby? Unfortunately there is doubt. But we are all hoping that they prove us wrong.
So now we go back to "normal-waiting-for-baby" state of mind. We are starting to talk about baby showers, color of the room, girl names, and shopping. We bury our feelings, thoughts, and concerns and only voice them to each other (the extended family that is). No one says "boo" to the couple. Just positive thoughts. Lots of prayers. And hours and hours on Google searching Down Syndrome and heart defects.
We pray for this baby... like we did for my daughter. We pray. We pray. We cry. We ask "why?" Then we cry some more.
Then, one day I take my son to his elementary school and I have my daughter with me. Into the office walks a little boy with Down Syndrome. He comes over and looks at the baby and says "what's wrong with her head"? And I say, "She had an ouchie and the doctors had to fix it. She is ok now. Her head is healing." And that little boy looks at me and says "Oh, she is a special little girl." I wipe the tear from my eye.
"Yes, honey she is. Thank you," is about all I can muster.
That was what I needed to shake me back into reality. This little girl will need us. She needs our support and love -- and she'll get it. Her birth will be a happy day, because lets face it -- whenever a baby enters our lives, it is a happy day.
Now, I am supportive.
Photo Credit: andrewmalone.
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