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The 3 Things I Needed to Hear After My Daughter With Down Syndrome Was Born

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When we had our daughter, Ava, nine years ago, we didn’t know she was going to have Down syndrome. We even chose not to know if we were having a boy or a girl. The fact that we were fortunate enough to create life was an incredible gift in itself.

And what a gift she has been. For those who don’t know Ava, she can be quite a feisty little thing. So it was no surprise when she decided to flip over in my belly a week before she was born. A week later, I went into labor and doctors realized she was a breach baby, so I had to have an emergency C-section.

It was quite hilarious now that I look back, since we had our other daughter, Karishma, with us and had to quickly find someone to take care of our then 18-month-old while we were at the hospital.

Oh, and there were no beds available, so all this happening in an office at the hospital!

I went into the operating room while my husband, Doug, handled Karishma. Thanks to our good friend, Tim Weaver, who came and got her.

As they prepped me, I kept asking for Doug. He finally arrived, and minutes later a baby was born. Doug said, “Looks like we have an Ava,” and I asked if she was OK. I saw her for a second before they took me to the recovery room.

The next thing I remember was Doug meeting me at the recovery room and holding my hand. I asked about Ava, and with a worried look, he said, “They think she has Down syndrome.” I asked if he is OK, and he said, “I am glad she is here.” These words made me love Doug more than ever. I knew we were going to be just fine, and I, too, was glad to have her here with us.

As the day went by, the doctors told us about the risks Ava could face. Plus, she had pulmonary hypertension, which they said could be a problem with her heart. They decided to transfer her to the Children’s Hospital of Philadelphia (CHOP).

As we prepared for that, my doctor told me I could have gotten a test to find out if she had Down syndrome before she was born, as if I would have done anything differently. Others told me “maybe they will find a cure,” and you shouldn’t tell anyone until you have the final genetic test results. The most popular one, “God doesn’t give you more than you can handle.” And on and on it went.

Then, just as the stress was getting to us, our friends, Julie and Bob, came to visit us at the hospital with a beautiful plant and an enormous smile and said, “Congratulations! She is beautiful!” Julie held Ava and told us how amazing she is and that she is going to be just fine. These words were exactly what we needed, and I’m still thankful for these two friends who welcomed our child just as everyone else was welcoming their child in the hospital that night. We were happy to have our little Ava regardless of the chaotic negative noise around us.

A day after she was born, Ava was transferred to CHOP. Doctors thought having her at CHOP would be safer, since they didn’t have the capabilities to help her if she did have a heart defect. During our terrifying ride to CHOP that afternoon, I remember praying that she would be OK and that I didn’t care if she had Down syndrome. I just wanted to hold her in my arms. When we got to the NICU, she was in the arms of an amazing nurse. This nurse had the most calming smile as she looked up at us and handed Ava to me.

Fortunately, Ava did not have a heart defect. Then, they thought she might have spinal bifida because of a dimple on her bottom. Turned out, it was just that — a dimple. We let out two sighs of relief and said many prayers thanking God for this blessing.

When she was transferred to the ICU, she had yet another great nurse who was always laughing and joking around with us and Ava. As we left the hospital two weeks after she was born, we had a clean bill of health. We had never been happier. Now, we get to just enjoy her. I remember just staring at her with awe. She looked at me with a look she still has that says, “Life is good and everything will be just fine.”

As we packed up everything, a nurse stopped by to say goodbye. He told us it has been nice taking care of her and said, “Enjoy her. She is a keeper.”

Now, when I’m having a rough day with the school district or when a random person says life must be difficult for us, I think of the three things I needed to hear when we were at the hospital:

1. “I am glad she is here.”
2. “Congratulations! She is beautiful!
3. “Enjoy her. She is a keeper.”

These are the words that matter, and life with Ava matters more than I ever imagined.

Originally published: August 8, 2016
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