Before LB’s birth, we thought we had it all figured out.
Don’t get me wrong. It was scary, beyond scary, but her disabilities seemed like something we could handle.
The idea of her having Down Syndrome and “Congestive Heart Failure” was a concept we had quickly come to terms with — but it was just that: an idea.
This idea was abstract, something we could think about. It was a thought that we talked about, had come to terms with, and accepted. But as much as we talked about her having these issues, it was nothing compared to coming face-to-face with the reality of it all.
And that’s when it hit him.
The day she was born, and even a little towards the end of my pregnancy, I could see him struggling. It wasn’t something obvious, and it wasn’t something that hindered his love for her — actually, quite the opposite, I think it made him cherish her more (I wrote about his overwhelming love for her in a previous post — click here to read that story).
And to be honest, I know I saw him struggling, but I don’t think I let it hit me until one certain moment.
When LB was born, everyone knew she had the “chances” of having Down Syndrome. And I honestly think that majority of our family still expected her to be born without it. Not in hopes of changing her, but just in hopes that her life might be a little less difficult.
I never had the invasive testing done during my pregnancy; therefore, what I did have did not conclude with 100% accuracy that she had Downs. The test was “only” 98% accurate, and people often said, “Well, there is a 2% chance she doesn’t.”
Even my husband.
So, when she was born, everyone was waiting. Waiting for confirmation.
I saw it immediately. I could tell our sweet LB had Down Syndrome — but J kept saying, “I don’t see it.” And everyone else just said nothing. It was like the big elephant in the room. Everyone was thinking about it, but no one wanted to bring it up.
Perhaps because they thought it might upset us; yet, little did they know, I was dying to talk about it. It was a part of her I had grown to love during my pregnancy. Her Down Syndrome didn’t define her to me, but without it she wouldn’t be the same little baby I had spent the past 9 months loving and praying over. To me, it was just simply a part of her.
In the hospital, I tried bringing it up but everyone seemed to quickly change the topic.
“Oh, look at her hair!”
“She’s so beautiful!”
“Look how big she is!”
They’d say anything to try and avoid the conversation.
Because, I think they saw it too, but didn’t want to be the one to say anything.
It took weeks, literally — it took 4 weeks, to get actual 100% confirmation.
And I will never forget the moment when the news arrived, because that’s when I realized what he had been struggling with all along.
J had just arrived home from work and I was sitting on the couch feeding LB. Cartoons were blaring in the background and he walked around the corner. There was no “Hey, how was your day.”
Instead, as soon as he stepped foot into the living room, he said with hesitation,
“Well, she does have Down Syndrome.”
I looked up at him with a puzzling look on my face. And my immediate response was,
Because I did. It still bothered me that people were doubting it. I thought this was something we all had come to terms with, especially J.
But in that moment, I realized he really didn’t.
Something I had accepted so long ago, was something that had been tormenting him. He had been holding out hope that it wasn’t true, that it was a mistake. He was still holding onto hope that she didn’t have Down Syndrome.
And that’s okay. Any parent would wish something away that they knew was going to cause their child to struggle, even more, in life.
He left the room and my mind was racing. How could I have really missed this? Now, looking back, all the signs were there. His constant, what-ifs. The way he saying he “didn’t see it” — like he was trying to convince himself. How he never once talked about it after her birth, except when he was doubting it.
I think I knew it all along, but I just kept telling myself that he was okay.
He had to be, he was the one who accepted it from the moment we found out. Throughout my entire pregnancy, he was the one comforting me with my worries about her future. He reassured me that she would be okay and it was going to be something we would easily be able to handle.
So what changed?
He saw her.
Not only that, but he fell in love with her.
He really fell in love with her.
And I say that, because I know he loved her while I was pregnant, but it must be different for dads. Reality doesn’t hit them until the babies are born — when they can see them, hold them, and bond with them.
Mother’s are able to build that bond with every kick they feel, every minute they spend thinking about the life growing inside of them. To dads, the baby is still just an idea, a thought into the future.
And that’s exactly what happened with J.
It was easy to accept the thought of his child having a disability. In his mind, everything would be fine. He wouldn’t treat her any different. She’d play sports. Our family would support her. Everything would work out.
He had accepted the idea of having a child with Down Syndrome; but when she was born, when the idea became reality, that’s when he began to worry.
When he saw her, his love for her came crashing into him like one big wave.
This was his baby, his tiny helpless child. He held her and looked into her eyes and his heart filled with fear.
He now knew the difficulties that came with Down Syndrome and the heartache that her heart condition would cause. And all of the sudden, he was scared.
With that wave of love, came a wave of fear that crashed into him even harder.
HIS child, HIS love, had a disability that would cause her many different kinds of pain throughout her life — and that’s hard for a parent to grasp.
True acceptance is hard.
And even once you accept your challenges, it doesn’t make them any less scary- just more real.
While he struggled with acceptance of her conditions, I struggled with acceptance of the future.
I accepted her having Down Syndrome during my pregnancy; I did not allow myself to hope it was a “false” reading. I knew if I did that, it wouldn’t be fair to myself or to her in the end.
That wasn’t my hurdle.
Instead, when she was born, I saw her and feared for what I knew was ahead of her.
I feared for as far into her future as marriage and independence to as her current as her medical issues. Everything seemed so scary to me. And still does.
She has a big surgery ahead of her, within a few short weeks actually. Which is funny, because when I was pregnant with her, the weeks seemed like decades away — But now, these same weeks feel like they are speeding towards us too soon.
How do you leave your child’s life in the hands of strangers? How are we supposed to leave her in a hospital room knowing that she will be wheeled away and undergo major surgery? How is this our life right now?
I still haven’t truly accepted that all of this is about to happen. Often, I find myself praying for a miracle. God healed so many extremely sick people in the Bible. He brought people back from the dead. Why wont he just heal her?
But I know her healing is on His time, not mine.
On my time, she wouldn’t be put through surgery. We would go to the cardiologist for her weekly check up and he would shockingly exclaim, “Her heart is perfectly healthy!” And, that would be the end of that journey.
No surgery. No heartache. No worries.
But, with each passing visit, that seems less likely to happen.
However, If she has to go through surgery, I choose to believe that that will be how He heals her. He will guide the surgeons and they will make her a new heart, a healthy heart. Through them, we will find her healing.
LB’s Journey has been full of twists and turns.
Just when I thought we had accepted everything and were ready to face it head-on, we saw her sweet little face and got a swift kick of reality.
Even though acceptance may be found, it doesn’t necessarily make the process any easier. There is no magic pill you can take to avoid the pain of worry and sorrow.
We often view acceptance as this wonderful concept that allows us full clarity and an eased mind. But it couldn’t be any further from the truth.
All acceptance really is, is knowing what problems you are facing and understanding there is nothing you can do to change them.
No matter how much you want to…