How do you forget moments like this in your life? I don’t think you do. They stand out in your mind as vivid moments, not just memories, but moments that you feel like you are living over and over again every time you think about them. I don’t think I will ever forget that drive home after I got the call about our sweet LB, after I learned she had down syndrome.
I tried to stay calm and cry only silent tears because Ry was in the backseat. We had just left her dance class and all I wanted to do was get home to my husband. I wanted to tell him, to cry with him, and to figure it out with him.
I remember Ry asking me what was wrong, because obviously I am not good at silent crying, and I could only respond that mommy was just worrying about stuff.
Once I walked in the house, I immediately told J that I talked to the geneticist. He was very calm and didn’t seem worried at all to hear what I had to say. I sat down next to him and tried my best to get out words, but I couldn’t. All I could do was nod, cry, and barely say the words I had been waiting to say all evening: “The baby has down syndrome.” When he was able to piece everything together, we just sat on the couch together and stared out into space for a few minutes.
He didn’t cry. He didn’t even seem upset. And that made me mad.
How could he not be upset by this? Why isn’t he showing me any emotion at all? All I wanted to do was cry together. To have a raw moment where all of our emotions were exposed and we could just be there for each other. But he didn’t.
He just tried to calm me and kept saying, “It’ll be okay. She’ll be fine.”
I now look back and know that he was trying to be strong for me. I was a wreck, but it made me feel worse. I felt like something was wrong with me for not immediately accepting the diagnosis as he seemed to and for being so emotional about it. If he could accept it without hesitation, without worry, what did that say about me?
It’s silly thinking about it now, but at the time I didn’t stop to see that we were both processing it, just in different ways.
I later found out that he did cry. A lot. Mostly when he was alone driving to work and many times when he tried to tell people for the first time, like his best friend and his dad. I think he just felt like he had to be strong for me and held everything in when I was around.
After I calmed down, I felt like I needed to explain to him why I was so upset; even though, I really knew he already understood. I was not upset that we were having a child with down syndrome, that wasn’t the problem at all. The truth was, I was scared.
I am a natural worrier. I worry about EVERYTHING- and I’m not exaggerating.
So immediately I was scared something was going to happen to our baby. I remember saying over and over again that I didn’t want to lose the baby. And it’s what I thought about 80% of the time. The other 20% was spent worrying about all the medical issues that are associated with having down syndrome: heart abnormalities, vision and hearing problems, speech problems, childhood leukemia, and the list goes on. Then, I spent an extra 20% worrying about her quality of life.
I wasn’t sad for us. I knew we would love her no matter what. But I was sad for her.
What does this mean for her future? Will she ever be able to be independent? Will she get asked to school dances? Will she feel alienated? I had so many things running through my head it was so hard to process it all.
Until one day… I just gave all my worries up to God.
I know some may roll their eyes, but it’s true. My heart wasn’t heavy any more. I knew that she would be born however God wanted her to be. She would have the life God wanted her to have. And she would do the things God wanted her to do. He gave her to our family for a reason and I don’t think it is because she needs us; I think it is because we need her.
We needed her to push me into putting my faith in God more. We need her to show us how to stop living in our “perfect” bubble and help us face the realities of the world. We need her to open our eyes to love others and not judge so quickly.
Now, do I still worry? ABSOLUTELY!
I just don’t let it consume me like it did. I talked to so many people once I got over my fears and they all couldn’t believe how “well” I was accepting the news. Many people tried to comfort me by telling stories of how their great-aunt’s cousin’s neighbor’s co-worker was told their child had down syndrome and they ended up being perfectly healthy. But those stories did not comfort me- in fact, they often times frustrated me.
I finally had to start explaining how I felt when people would tell me those stories, and my view is simple.
I cannot hold onto hope that she doesn’t have down syndrome.
That’s not fair to her and it’s not fair to me. Because I know, if I keep it in the back of my mind that there is that chance she doesn’t have it, I will subconsciously hold onto that hope. Then, when she is born, it’ll be like my world is shattered all over again. And that is not fair to her.
I don’t want her to be born and the first emotion she feels from us is disappointment. I don’t want to look into her eyes and have her feel anything else other than pure joy and love. She deserves to look back at us and feel how much we love her- down syndrome or not. The only emotion I want filling up that room, and our hearts, is love.
I still have close family members who have not accepted this diagnosis. They seriously look me in the eye anytime I bring up her having down syndrome and say, “She doesn’t have that.” It breaks my heart.
We are a month away from her arrival and that scares me. I know everyone takes this type of news in their own way, but I don’t want people walking in and crying when they see her, all because she is not what they envisioned in their head. It’s just not fair to her; and now, that is one of my greatest fears. Not only do I worry about the world accepting her for who she is, but now I have to worry about her family accepting her too.
Down syndrome will just be a small part of who she is. It will not define her. She is so much more than that; I can tell already.
She’s a feisty, wiggle-worm who makes my heart so happy. She loves pushing the limits- literally -she stretches out as faaaaaar as she can until I yelp, and THEN she will jerk her limbs back in! She is already her own little person.
Her brother and sister are still too young to try to explain this to (I have tried and it went way over their heads). They will figure it out eventually, but all they know right now is how much they love her and how excited they are to meet her –which should be NEXT MONTH!–
Our views have changed so much in the past few months already.
A couple of months after we found out, children with down syndrome and her having down syndrome was all that was on my mind. I was researching everything I could and wanted to talk about it 24/7. But now, it’s hardly something I think about.
She is our little LB that we love so much, and that’s all that matters to us.
–Next Post of LB’s Journey: Finding out her diagnosis of down syndrome is not the hardest thing we will have to handle on this journey.