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Our Family Has A Lot Of, "Stuff".

Our Family Has A Lot Of, "Stuff".

I was laying in bed with our 8-year-old reading bedtime stories when I remembered I wanted to remind my husband of a medication change for our 5-year-old.

I quickly ran to the top of the stairs to let him know we were increasing one of his night-time meds and ran back to the bedroom with our older son.

When I hopped back in bed my 8-year-old asked, “Mom, is it harder having a CDG (congenital disorder of glycosylation) kid than a regular kid?”

I asked him what he thought?

“Yep. You have his tube and you have to think about a lot of stuff.”

A lot of stuff.

We do, we have to think about a lot for Christopher.

We have to think about medications, specialists, therapies, appointments, illnesses, and so much more.

We have to remember to administer medication multiple times a day, watch for the warning signs of low blood sugar or an illness brewing.

We have to do daily therapies to help him make progress, inch by inch.

We have to juggle life with our elementary age son and infant, along with getting Christopher to his private therapies after his few hours at kindergarten.

There’s also the IEP, communication with his intervener and school nurse, paperwork for the county, and always fighting for what our son deserves and needs.

But we also have to think about how having a child who is severely developmentally delayed and medically complex affects our other children.

Our 8-year old’s questions keep coming.

He knows his brother was born differently.

He knows that he’ll never grow up and live alone after a conversation when he talked about life when Christopher is an adult and has his own house.

I had to shatter his vision of that when I told him that Christopher won’t ever live without mom and dad.

The response to that was a, “hmmm”, followed by, “I don’t want to know more,” as he hid his head in his pillow.

I worry so much that he’ll resent the time we need to take to care for Christopher.

I worry he’ll feel the weight of the future on his young shoulders.

I worry that we aren’t doing enough to show him he matters just as much as his brother who requires much more.

I worry that he won’t know how much he’s loved.

When I asked him if he thought it was harder having a brother with CDG I anxiously waited for his response.

“Mom, you’re the greatest, *insert kiss*, and I think it’s more fun.”

I know that being Christopher’s brother comes with a lot more.

More patience, empathy, and experiences beyond his age.

I know that our family has, “a lot of stuff.”

But included in that, “stuff”, is love beyond measure.

And fun.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Melissa Schlemmer

Meet Our Blogger

Currently I am trying to juggle life with an infant, 7 year old, and a nearly 5 year old with special needs. Life is all kinds of crazy, but we are loving it all. I’m passionate about advocating for our son and sharing our story so other parents realize they aren’t alone in this.

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