Special Needs Marathon by Joanna Kent

The other day I read, “Remember how exhausting that newborn parenting phase was? Well, some special needs parents have been doing that for years. So let that sink in.” It is a meme that is supposed to inspire thought and compassion from those who don’t know what it’s like to have a child of severe need but have a child and therefore know the feeling of exhaustion. But, unfortunately, to me, it placed an elephant in the room.

I want to address the elephant in the room. Oh wait, that’s my son. He happily jumps, throws his body, non-stop wants to eat, loves to play in the water, and boy does he love to kiss and hug—all of which he does to such a degree that it exhausts the most able-bodied of people.

So here we are. Five years into the infant stage.

If it isn’t enough that he needs help with every aspect of his life from drinking water, eating his food, getting dressed, still using diapers at age 5, and sleeping in a crib for his safety, he also lacks understanding and control. So, like many young and curious people, he hungers for more space to move, more food to try, and more of life.

But he doesn’t know what that means. He doesn’t realize that, of course, we love to give him cuddles and hugs, but the constant picking up of the deadweight of a child who doesn’t help you, takes a strain on any able body. He doesn’t understand that grabbing on your clothes or hair isn’t helping you pull him up. He surely doesn’t know that leaving his legs to hang and not wrapping them on your waist makes carrying him an exercise in mental and physical frustration. Nor that he shouldn’t place every item, down to the wall and the ground, into his mouth.

So here we are. Five years into the infant stage. Five long years of one child still needing so much to keep them safe. That physical toll is one thing, but the mental toll is another.

[…] I see a psychiatrist, a therapist, and I do marriage counseling.

Physically I work out daily. That means a walk, cardio, or strength training is a must on my list. My son is growing. I don’t have a choice because, as one of his principal caregivers for the rest of my life, if my back gives out, I don’t have the luxury that he will magically pull it together and “buck up” as a typical child might be able to.

Now realize I didn’t say “his life” but “my life.” That is where the bridge between physical exhaustion and mentally exhausting merges. Because the reality is, I don’t know how long that will be.

Mentally, I see a therapist. Correction, I see a psychiatrist, a therapist, and I do marriage counseling. Because even though I am “strong” and have weathered some pretty tricky things by myself, recently, I have decided that if I want to make sure I can maintain stamina and my mental health overall, I need more help.

You do not need to hit rock bottom to realize what you are doing isn’t sustainable.

I have help. I have a lot of support compared to some people, not as much as others. But, for years, it was only my husband and me. At times it was only I, and at other times, it was only him. The reality was, we could do it because we had no choice. That also doesn’t mean the toll wasn’t too high.

We are all just trying to survive at times.

But as there have become options, I have reached for every line of help I could because the people that come into our lives for the brief time they do are like water on a hot day. Sure it feels great at that moment, but it doesn’t last long.

So I don’t just take the help. I appreciate it. I treat every person who comes into our lives and homes as though I need them. As though they are essential because they are. Sure, I am human, and I can get snippy, tired, or just not kind enough, but I correct that as soon as I can because they choose to be in our lives. Their time is priceless too.

I do not subscribe to any help is better than no help, though. If they can’t meet my son’s needs, then I prefer none at all. However, I realize that some people don’t have this luxury because they have other obligations. So at times, subpar is better than nothing. We are all just trying to survive at times.

So, I decided I don’t want to “just survive” anymore. I want to live, which means working out harder physically and mentally, but not for my son, for me.

Share this:
Joanna Kent
Joanna is mom to a "typical" 7-year-old and a special needs 4-year-old son with a rare genetic disorder. She is a full-time mom, caregiver, and content creator for OHS. She wants to share experiences hoping that others can benefit from what she has learned along the way.

4 thoughts on “Special Needs Marathon – the elephant in the room”

  1. Hi! I live in Colombia. I have a 10 yo boy, and a 9 yo with Rett’s Syndrome. Happy to have found this site!!!!!! Do you aldo post in Instagram? Would love to follow aswell!

Leave a Reply

Your email address will not be published. Required fields are marked *