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Mum and Dad

What it’s like knowing you will probably outlive your child


Whitney Barthel

posted in Parenting

Of course I can’t say with one thousand percent certainty that I will outlive Daniel, my 7-year-old with Down syndrome. But, the likelihood is that I will.

Down syndrome*Daniel and me boating this summer.

When my husband and I received Daniel’s prenatal diagnosis, my first thought was, “Oh my gosh, I will never get to do anything else for the rest of my life because I’m going to be so busy taking care of him.” It’s embarrassing that I felt this way, but it is the honest-to-goodness truth. *See: I was terrified of Down syndrome, but didn’t need to be.

After having Daniel I realized I didn’t have to worry about him not ever being able to live independently of me, but if I am forced to live independently of him.

Special needs mom life*Daniel and I celebrating the day he finally graduated from preemie to newborn-sized outfits.

Far beyond the innumerable hypothetical roads Daniel will be able to choose from throughout his lifetime, is the even more terrifying “end of the road.” And I can’t think of which would be worse — him reaching the end of his road first, or me.

Perhaps even more heartbreaking than knowing I will someday have to experience a life without my child, is knowing the alternative is also a possibility: that someone else will one day have to take over my role if I am no longer around or am unable to care for my beloved child.

I don’t know which would be worse.

I cannot even fathom the pain of losing a child. And while I would never wish to outlive one of my children (especially Daniel), this holiday season (and my raging pregnancy hormones) had me questioning “what happens if I did vs. didn’t?”

This holiday season has been really cold, even for upper-Midwestern standards. When it is -40 degrees out, sometimes cars just don’t start. So, when Ryan called me at 11:45 telling me he was going to get a ride to town for my family’s Christmas and I would have to get all the boys ready, get the gifts loaded, and get to town by noon in our suburban, I was absolutely not happy but not surprised either.

special-needs holiday*My family at a Christmas party this holiday season.

Thirty five minutes after we were already supposed to be celebrating, I was driving down the gravel road. As the car lurched forward (because that’s what cars do in negative-double-digit weather), I just knew I was forgetting something, so I started going through my mental list. Do I have everything for Charlie (the baby of the family): diapers, wipes, a pacifier? Did I remember to bring Daniel’s things?

Nope. That was it! I forgot to bring Daniel-friendly food. Daniel is working through some sensory issues so he is only able to actually eat certain foods without gagging. Because of this we always pack him food whenever we will be out of the house during a mealtime.

Upon my realization, I backtracked, ran into the house, and grabbed a couple of microwave dinners. And while it would be totally understandable for someone to be annoyed by this, it actually caused me to lose my mind.

Which is kind of hilarious because I literally just wrote about how being a special-needs family during the holidays is awesome.

This seemingly minor sidetrack brought back feelings that have been deeply buried. I thought, I don’t understand why no one ever asks me what they can have ready for Daniel. I hate that they would even have to ask. These are the people who would be taking care of him if something ever happened to me. Why can’t they just know?

I mean, my family is super loving and accommodating. It is no big deal that my one sister is gluten intolerant so there needs to be gluten-free options, or that my other sister hates onions, so those must be omitted from every recipe (even though everyone else loves them). Yet no on can seem to ever remember Daniel.

Special-needs holiday*My family at Christmas 7 years ago. From left to right: My always-late husband, me holding Daniel, Caitlyn (no-onions sister), Alyssa (gluten-free sister), and my brother Jed (no dietary restrictions).

I know Daniel is my responsibility and I have no problem caring for him, but I just felt so defeated.

These feelings first emerged around two years ago as Joey Feek (country singer and fellow Down syndrome momma) lost her battle with cancer. I wrote,

When I got Daniel’s prenatal diagnosis my biggest fears were in this order,

1. Will he ever be able to live on his own? Am I never going to be able to bask in empty nesting-ness?
2. Will he ever be able to ride a bike?

Now, my biggest fears are,

1. If I die before Daniel, who will look after him and be there to love him and clean his ears even though he absolutely hates it?
2. How would I survive if he died before me?

Knowing that someone else will maybe have to step in one day to do my job really sucks. Knowing that this is not the likelihood sucks probably even more.

What aspect of being a special needs parent do you hate most?


Photos by Whitney Barthel

The post What it’s like knowing you will probably outlive your child appeared first on BabyCenter Blog.

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