Down syndrome · Uncategorized

Heavy

I’ve heard this one a lot: “But…that’s normal for a child with Down syndrome, right?”

Each time, I say, “Yes, it’s pretty normal for a child with Down syndrome to (Insert: have a heart problem/ need a lot of therapy/ need surgeries /get sick a lot).” When I want to say, “It’s not normal for us. This isn’t normal for me. It’s still really hard.”

I have conditioned myself to speak of these things as they are normal. They aren’t normal. Expected, maybe. And that helps me to be prepared.  But having my child in the hospital,  or going through endless amounts of therapies, or preparing  for her to have surgery isn’t any easier for me to go through than if a parent of a “typical” kid goes through it just because Abby has Down syndrome.  It all carries the same weight.

Sure, time and experience have worked to strengthen the muscles of my resilience.   I’m a little stronger and I feel like I can endure just a little bit more than I could. I watch as people who have children with needs that far surpass Abby’s carry a weight I do not think I would be strong enough to bare.  In talking to them it is the same as it is with me: you do it because you have to, you learn as you go. You get stronger. You carry on.

But the weight is still there. At the end of the day it still feels heavy on my shoulders, and wears through to my soul. We all have our ways of coping with the weight. We have religion, we have friends, we have support groups. These things all work to help lighten the load for a time, but no one, no matter how faithful or popular, can go without shouldering the weight on their own, and though we may have conditioned ourselves well, it’s still pretty heavy.

 

21 thoughts on “Heavy

  1. I think it’s great that you are able to keep that perspective there…others have it harder…others are dealing with more…BUT…

    This is YOUR kid.

    I get the heaviness. I even get that you’re building up some resilience muscles…just sorry you’re having to work them out so much.

  2. When S first had his stroke my husband said to me “Are you still going to say other people have it harder than us?” (We have children with multiple disabilities.)I told him that it was bad, granted but S was ALIVE! It was how I held on in those dark days. So yeah…I get this.

  3. Sending Hugs your way.

    Also, I think it’s perfectly acceptable for you to tell someone when they ask if these things are normal, just what you said. These things are expected, but not normal for your family.

  4. When people say stuff like that, I’m sure they have no idea how invalidating it is, but crap, it has to be hard to hear it all the time. And I hate when people say, “well, yeah, your kid has autism, but at least it’s not cancer” or whatever. Sure, I agree, there are people who have it harder, but that knowledge does not make what I’m going through any easier.

  5. Sometimes you write things that I would love to print out and hand to people to read when they say things I deem ridiculous “oh well atleast he xyz!” or “don’t worry heather – God only gives you what you can handle!” and so on.

    This post is added to that list.

    I understand the heavy. I don’t like it. But I carry it.

  6. Seriously. These things weigh on you no matter how expected they are. It’s like hearing the cardiologists talk about Cora’s impending open heart surgery (that she had almost 2 years ago) as no big deal, just routine. I just kept thinking that maybe it was an easy surgery for them but it was not routine for me and my poor little one in serious heart failure. And I’ve had these thoughts so many times since. So glad that there are others that relate and sending some virtual support your way.

  7. “I think that if I ever have kids, and they are upset, I won’t tell them that people are starving in China or anything like that because it wouldn’t change the fact that they were upset. And even if somebody else has it much worse, that doesn’t really change the fact that you have what you have.”
    ― Stephen Chbosky, The Perks Of Being A Wallflower

  8. Amen! I used to get so angry when it felt like others were so flippant about everything because it was “normal” for Down Syndrome. Like Open Heart surgery because it IS OPEN HEART SURGERY. Thank you for letting others know how this still feels to be the Mom. A tired Mom but always getting stronger when there is no other choice.

  9. Until you had Abby and started blogging about Down Syndrome, I had no idea that there were so many associated health problems that were considered “normal”. I would be upset if anyone made a comment like that to me. Stuff like that is hard and scary regardless of whether or not it is “expected”. And just because someone else might be “worse off” doesn’t invalidate what you and your child and your family are going through.

  10. Dude, your kid has Down Syndrome. But having heart problems is not normal, kids don’t have them normally. Kids having a risk for cancer is not normal. Worrying about your kids future is normal, but not worrying nearly every second of every day. Wanting it a little easier is normal, but not thinking that nearly every second of every day.

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