To the Parents of an Older Child With Special Needs

I’ve barely even begun this journey, and I’m exhausted. Seven months, three weeks and six days ago, I was oblivious to the road ahead. Our fourth child had a seizure at just 4 weeks and 3 days. Shortly after, we learned the cause was due to a genetic mutation on her CDKL5 gene. After a quick Google search that day, I learned my beautiful baby would most likely not walk, talk or feed herself. According to the International Foundation for CDKL5 Research, most children with CDKL5 are in wheelchairs and “dependent on others for everything.” My husband and I were left feeling devastated and at rock bottom. 

There have been many days since that I’ve wished to throw in the towel and give up.  Instead, I give myself a proverbial smack, wipe away the tears, suck it up and just keep on going. More often than not, I go through the day as if I’m an empty shell, simply going through the motions but not present. There have been a couple days where I do not know how I functioned at all. I feel so guilty because I’m sure my other children can tell. I have conversations in my head about what they will say about me when they’re older, that I was always preoccupied or appearing sad or frustrated all of the time. 

It’s often during these more challenging days and times when I think of you most.

I think of how many times over the years you’ve had to pick yourself off the floor on days when it was just plain hard. I think of all the times you must have wanted to say, “I’ve had enough.” I think of all the challenges you might’ve endured, and I’m sure there are some I don’t even know exist.  It all makes me wonder, how have you done it?  How do you do it?  How do you keep doing it?

People have told me I’m strong, that they don’t know how I do it, that I’m an inspiration. You know better than I do that I’m only doing what I have to, what any parent in our situation would do. Maybe you can relate when I say being told I’m “strong” or that I make someone “proud” is not always enough. 

Sure, those sentiments make me smile and give me a little boost of reassurance, but then looking at my daughter, being “strong” and “inspirational” has done nothing to help her physical, mental or emotional development. 

I know this journey is going to be an uphill battle, and there will be depressing and challenging days. I also know the journey will have plenty of celebrations that will counterbalance the negatives, and of course, in the end, it will all be worth it. 

However, no one knows more than you that this road with all the bumps, forks and unpaved paths can be hard. Tell me, how do I maneuver through it all? I know like parenthood and life in general, we all experience things differently, and I’m sure I will learn along the way — but what advice can you give a rookie to reference for many years to come?

What I’m asking, dear moms and dads who have traveled this road for much longer than I have, is this: What gets you out of the slumps? What makes you stay sane? How do you balance your fears alongside reality? Is there anything that will help heal the feeling in the pit of my stomach or the ache in my heart? When all you have is hope and faith, and you begin to see those fade, how do you get them back? How do I climb to the top of the mountain and get some fresh air? If I keep my eye on the prize, what does that look like? If I’m honest and realistic about what the future holds developmentally for my daughter, have I given up on her? Does that mean I already lost the hope? If I keep dreaming about what the future might hold, am I just naive if I think those dreams might actually become a reality?

My motto over the past eight and half months is that we will try everything once. It doesn’t matter if the idea appears ridiculous or holds no water. If someone tells me dancing in rain puddles will get my daughter to laugh, you bet I’ll place her outside in a storm. I’ll continue to dream and take chances, but how do I protect my heart from the extreme pain that follows when those “miracle treatments” just don’t work for us? How do I balance the fact that I feel like a failure, when I know deep down it really won’t make much of a difference if I sit that one “potentially life-altering experience” out?

If you, my dear veterans, could give some advice for me on this journey, what would it be?

Sincerely,

A rookie mom to a special baby girl who has special needs

Follow this journey on Sonya’s Story.