When You Forget How to Be a Mom to Your Medically Fragile Child

Driving in the car last night, in a moment of quiet, it was so beautiful as I looked out at the fog along the horizon. I thought of the fact that I rarely have quiet moments like this in my life. I’m certain most moms and parents cherish these quiet moments. Often in my quiet moments, my head starts buzzing about all the things I’m not doing for my son, Von. The appointments I haven’t made, medications I haven’t reordered, therapists I haven’t talked to about progress and the lingering doubts about what I’m doing as a mom, parent and human for my son.

Quietly, I listened to the hum of the car over the country road and thought that in the midst of all this chaos of having a child with so many needs, I’ve forgotten simply how to be a mom. All the activities, crafting, cookie baking, trips to the amusement parks, movies and museums — they’ve never really happened. Playing pretend, making forts, playing hide and seek or giggling until you cry have never happened. Somewhere in the midst of this chaos, I became a case manager, nurse and doctor, and I forgot how to be a mom.

In fact, I would relent I’ve never really been a mom because Von’s been sick from birth. It’s been a world of hanging on for the next disaster, appointments with constant bad news and fighting for every single milestone. It’s been a goal-oriented event of trying to get my child not only to survive his adolescence but learn along the way.

As the thoughts poured in about the life I envisioned versus the one I believe I was given by God, an image of a wind-up toy came to mind. I imagined slowly spinning the winding key on the back of the toy. The toy starts to move without any thinking. Movements are mechanical, automatic and repetitious. When the key is done, the toy stops moving. It occurred to me that every single morning, I wake up, I wind my key on my back and I simply have been going through the motions of being a mom. There hasn’t been a lot of emotional thought in the process, no time for reflection, and certainly the movements from day to day have been the same as I try my best to survive another day.

My life is a series of mechanical events that have sucked out the joy of motherhood. There is no thought about crafts, baking cookies or playing pretend. In fact most days, my key is wound so tightly I feel like the toy that has malfunctioned, and I’m lying on my back moving but going nowhere. I feel my legs and arms working to move, and I can’t move. I can’t make any progress because I’m stuck in the same place every single day. In the morning when I wake, I think of all the things I’m going to do differently. All the giggles and games we are going to play. Then I’m hit with the laundry list of therapy appointments, doctor’s appointments and to-dos for homework given to us by his therapists and nurses. I wind up my key, and I move through another day.

I forget by 9 a.m. that I was going to bake cookies, make crafts, laugh or simply enjoy being a mom. By noon I’m defeated after another meal that has taken more than an hour for him to eat. I worry he’s going to become failure to thrive again, why he’s not chewing, why he won’t swallow and when he will actually want to touch food. By 3 p.m., I’ve forgotten I wanted to play a game of hide and seek, because I’m watching his chest to see if he’s retracting, looking at his eyes to see if they are puffy or dark, checking his temperature and feeling his hands to ensure he’s not clammy. It’s now time for dinner, and I sit down for another meal that will take an hour. I stare blindly at him, and I hope it will one day just click. He will magically chew, swallow and do it all by himself.

Dinner is over, and all I can think of is having 10 minutes to myself where I’m not worrying about his health and development. As I drift off to sleep, my thoughts go back to him eating, medications and therapy. I forget again I was going to hug him so hard he pushed me away. Or that we were going to cuddle in bed before he went to sleep. My sleep is constantly interrupted by dreams of what could be or will be, and I wake up to the same reality.

It isn’t that I dislike my life, but there are days I just wish there was a different reality. Moments when I could simply enjoy being his mom. Of course life isn’t all doom and gloom in our home, I do get quiet moments and giggles with him. But they are fleeting. I try to make sure we have these moments every single day. I gently tickle his feet, nuzzle his neck and throw him in the air. I chase him up the stairs and follow him in to his room. I let him roughhouse, climb and explore with me. Yet, these moments never feel very authentic. They are just another part of my wind-up toy. Planned moments where I’m going through the motions of being his mom.

I know it will get better. I know we will find a way through this darkness. But there aren’t always happy endings when your child is medically fragile and developmentally delayed. There are really hard days, hard moments and hard seconds. There are times it’s hard to breathe.

The next time you see me struggling, frowning or even quiet, just ask me if I’m OK, remind me I’m doing my best and pray that we will get through this and come out the other side victorious. I don’t want to be a wind-up toy forever.

If you are reading this, feeling like this, just know there is a way to get through this. Every single day we have the opportunity to change the way we parent. We can become more present by asking for help and getting help with our lives. We cannot be everything to our children and also expect to be good parents.

I will take the first step in getting assistance, and I hope you will, too.

Follow this journey on Without a Crystal Ball and Von’s Super Hero Facebook page.