There are a few moments in life that have such an impact on you that just thinking about it can bring back all of the raw emotions just like they are happening again. One of those moments for me was the day I found out my baby I was carrying would have Down syndrome.
I still remember every single detail about that day. I was standing in the toy section of Dollar Tree with Luke and we were just about to walk to the check out register when my phone rang. I told my doctor that I was checking out but he didn’t want to tell me while I was in the middle of the store so he told me he would call me back in five minutes. I’m pretty sure time stood still during those 5 minutes. I sat in my car staring at the clock with my stomach in knots. I knew something was wrong. It was my doctor calling and not the nurse. He wanted me alone to talk. I knew this could only mean there was a problem. I tried to find something for Luke to play with in the backseat so he wouldn’t be paying attention to me.
After what seemed like hours, my phone rang again. I’ll never forget his first words to me, “I am so sorry to tell you this but your test results have come back and the baby is positive for Down syndrome.”
I just sat silently looking at Luke in the rearview mirror and slowly pulled my sunglasses from the top of my head to my eyes. I could feel them welling up. I didn’t want Luke to see my crying. The rest of the conversation was pretty much a blur. It was like I went into some type of trance. I could hear him talking but it was almost as though he was talking to me from a dream because it felt so far away.
At the end of the conversation, I asked the doctor if I was having a boy or a girl. He seemed surprised by my question and told me that he forgot to look at that and would call me back tomorrow to let me know.
Sadly now I realize that the majority of people that find out they are having a baby with DS, will choose to abort them. So I’m sure he was caught off guard to hear I still wanted to know. But that was my BABY in my belly. It wasn’t my Down syndrome in there. I was already in love with my baby and there was never a question on what I would do.
I somehow managed to drive to McDonalds after I hung up with him. The whole time barely able to see because I was fighting my tears for Luke. I had been successful with keeping him busy and he had no idea what was going on.
I called my dad and asked if I could bring Luke over for a while. When we got there, Luke immediately went off to play. I took a huge breath because I knew getting words out would be next to impossible.
I managed to ask my dad if he would let Luke stay there for a few hours. That Clint was getting off work and I needed to talk to him privately. My dad could see my eyes welling up and asked me if everything was ok. That was all it took. The tears came flooding out and almost incoherently I sobbed to him “No! My baby has Down syndrome!”
I felt like I was going to collapse on the floor. My father is truly one of the best men I have ever known. However, he is not a very affectionate man. And that was always a good thing to me because I was not affectionate either. I knew he loved me. It didn’t have to be said and he didn’t have to hug me for me to know.
But in that instance, just as I thought I would collapse, my dad grabbed me and hugged me so tight. He looked at me and said “It’s going to be okay. We are all going to love this baby just like we do Luke!” He held me a few more seconds and let me just finally sob a little. Then I wiped my face and got ready to leave so I could tell Clint what was going on.
I honestly do not remember anything about initially telling Clint. I don’t remember his immediate reaction. I think it was shock more than anything. But what I do remember was once it was all out there, just gasping for air through the sobs and yelling “Why????? What did I do to deserve this??? Why is God punishing us???”
I did not go to sleep that night. I stayed up the entire night crying uncontrollably. I just kept praying asking God why was He going to punish my innocent baby. Begging Him to take his wrath on me but not my baby.
Those 24 hours were without a doubt, the hardest I had ever experienced. The next several months were not much easier.
We met with a high risk specialist that pushed for us to terminate the pregnancy. We read horrifying stories of parents that would just abandon their child with DS because they just couldn’t handle it. We were met with so many people telling us how sorry they were. It was nothing like the exciting pregnancy I had experienced with Luke.
I would love to say all of that changed as soon as we had baby Ace, but that would be a lie. We had a long period of darkness, sadness, and depression. But eventually, I had my “Ah-Ha!” moment with Ace and started to see that he was a great baby. I started bonding more with him and fell in love all over again.
You know the saying, “the more things change, the more they stay the same”? Well, I’m afraid that applies here as well.
You see, it’s been 2 1/2 years since Ace made his entrance into this world. Yet just the other night, as I was lying beside his crib waiting for him to fall asleep, I found myself sobbing once again.
Once again I caught myself crying out to God asking “what did I do to deserve this??”
The difference was this time, I was crying out in gratitude. I sat there looking at Ace as he was slumbering off and was just overwhelmed with how much love I have for him.
Ace has brought happiness, joy, and love to our entire family in ways that is impossible to put into words. He has taught us so much. More than we will ever teach him.
Ace has taught all of us what true unconditional love looks like. His heart is more pure than anything I could have ever even imagined.
He has more determination and strength than any full grown adult I’ve met. He is the embodiment of caring and empathy.
It has become a little bit of a joke in our family. Luke has and will always be my mischievous boy. So he finds himself in trouble way more than he should. He loves to point out when he gets in trouble that Ace hardly ever gets in trouble. To which I immediately point out that if Ace does ANY of the things that Luke does, he will also be in trouble.
Luke will inevitably reply with “Well Ace doesn’t usually do wrong. He has Down syndrome, remember?!” I asked him one time what that had to do with anything and Luke looked at me (with his “you can’t possibly be this dumb” stare) and said “you know Down syndrome means you are born with extra! So Ace can’t help it that he is extra sweet, extra loving, and extra cute!!!”
I personally think this is the best explanation of Down syndrome I have ever heard!
I have come to accept that our life was forever changed, sometimes in very hard ways. Luckily we were never a normal family to begin with so we think Ace fits in perfectly with our unique family. We have had to make a lot of adjustments. There have been some hard time and some scary times. Luke and Ace have typical sibling spats. But I have also never seen two brothers that love each other as much as those two.
I know now that there will likely be many more times that I will lose control and call out to God asking him what we did to deserve this, such as when Ace gets so sick and has to have medical procedures no small child should ever endure. But I also know without a doubt that there will be even more times that I cry out the same question to God with happy tears in my eyes, such as when Ace finally walks without his walker or the first time I get to hear Ace tell me he loves me.
One thing I’m even more sure of than that is that I would not trade a single one of those tears to change him. I still don’t know what I did to deserve this, but today I just want to add one more thing to pray out…
THANK YOU GOD FOR BLESSING OUR FAMILY WITH THE MOST PERFECT GIFT EVEN WHEN WE DON’T KNOW WHY!
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