Help! My Friend has a Child with Special Needs!

There are so many rants and articles and blogs floating around today with a title like, ’20 things never to say to a new mother/single dad/parent of a large family/pitbull owner/diabetic/vaxxer/anti-vaxxer/breastfeeding mother… etc etc etc.’ And let me tell you, some of those are utterly warrented. Sometimes, especially on the internet, we engage our mouth (or keyboard) before we engage our brain. Or, to quote my dear, sweet grandmother, “That man just opens his mouth and stupid falls out!” 

Sometimes I open my mouth, and stupid falls out. Once I was introduced to a little girl and a dog at the same time. Their names were Savannah and Winter. I later addressed the little girl as Savannah… and much to my chagrin, discovered that was actually the dog’s name. (I’m all for unusual names, but c’mon, make it easy on the rest of us and give your dog a dog name. I would never have assumed the little girl’s name was “Fluffy”)

So we all have these verbal glitches, but one of the hardest things is when someone is in a situation that you yourself have never experienced. And I’m struck by the need for some friendly guidance because of the vast amount of misinformation there is on the internet and elsewhere about my child’s medical condition, so although some of these my be diabetes-specific, they really apply to any parent with a child needing above-average care. 

Don’t say: “What did you do to cause it?” or even worse, “You obviously caused it by doing ______.” 

Instead, if you must comment on cause, ask: “Do the doctors know why?”

Reason: We live, breathe, and sleep our child’s needs. It’s a 24/7 deal. Sometimes it’s nice to be able to tell somebody what’s going on. It’s NEVER nice to be blamed or guilted. Trust me, we’ve already been through anything we could have done differently in our head. 

Don’t say: “I couldn’t deal with that.”

Instead, say: “That must be so hard. Is there anything I can do to help?”

Reason: Well, duh, it’s hard. But if I don’t deal with it, (in my case, giving daily injections and/or glucose checks) my child dies. Don’t tell me you couldn’t, because if it was your kid, you would soldier through, just like me. 

Don’t say: “Your normal kids…”

There’s no “instead”. Just don’t. Seriously, my four-year-old has better manners than that. 

Don’t ask: “Can he/she do ______?”

Instead, ask: “Is there anything today that he/she shouldn’t participate in?”

Reason: We’re a little touchy about our kids. If we think someone is putting limits on them, we can get very defensive, very fast. Sorry, that’s just the way it is. We’ll try to let you know if there’s something they need to sit out, but more than anything, we and they just want to be normal. 

If you are comfortable with it, uask if the parent would like a break sometime. Offer to learn enough about the care to babysit for an hour or so. 

Offer to get together, and come to them. Especially with toddlers, disrupting the routine is even more explosive when there are higher needs involved. (Bonus points: Bring coffee)

Listen. Sometimes we are going to sound like a broken record. Sometimes that’s what our life feels like. 

Remember: They’re just kids. They need the same amount of love, respect, nurturing, and dicipline that other kids do, they just need a little more, besides. I’m not a better parent, or a worse parent, because my child needs little more attention. It just means I need a little more coffee. 

The Million-Dollar Question

I just had one of the hardest conversations of my life. I would say it ranked somewhere between “Honey, I lost my job” and “Your grandfather is dying of cancer.” 

We have some of our best conversations in the car, and even as young as my kids are, sometimes they get a little deep. Today we were driving home from the doctor’s office and my 3-year-old was examining the green medical alert bracelet on his wrist. His little brow was scrunched up, and I could tell he was thinking hard. 

“Mommy, why do I have Diabetes?” 

Once, in elementary school, I fell backward off a barrel, landing flat on my back and knocking the wind out of me well and proper. I couldn’t breathe, I couldn’t think, all I could do was gasp for air that was just out of reach. The pain of having all the air forced out of my lungs terrified me, and as soon as I could breathe, I started to sob. Not so much from the pain, but from the fear. I’m not talking about delicate little whimpers, either. I’m talking about full-on sobs, to the point that I couldn’t look the freckle-faced neighbor boy (who had won the “king of the hill” battle) in the face for weeks afterward. 

That breathless feeling, those terrified sobs, that “sucker punched” feeling, they all welled up inside me when I heard that sweet little voice ask that impossible question. 

Because there is no real answer.

There’s no “why” to Type 1 Diabetes, at least not that anyone has found. It’s all “we think” and “perhaps” and “we often see” and “there are studies that indicate,” but there are no real facts, other than that his body suddenly decided to attack his pancreas, destroying its ability to make insulin.  (No, I did not feed my child too many pancakes and candy bars. That’s the other kind of Diabetes, which is not an auto-immune disoder)

So how do you explain to a three-year-old that the God who made him, who supposedly loves him and “ordained his days before he was born”, allowed him to get a disease that has no reason, has no cure, and has no end? That requires him to get poked and tested, puts him at risk for all manner of complications, and, at the very least, requires him to wear an insulin pump for the rest of his life? 

Somehow, I stammered out a shamefaced answer. Something full of lame platitudes and encouraging smiles and half-hearted assurances of Jesus’ love and protection. Not that I don’t believe those things, because I do. Not that I don’t think he should, because they’re true. But somehow, in the face of the child that I have to stick and poke and squeeze blood drops out of and attach tubes to, they just seemed to fall short and I was left feeling like I had failed to give an acceptable answer.

What do you do when there IS no answer?  

I know this isn’t a normal, feel-good, fluff post. But it IS reality. I don’t write all this so that you pity him, or me, pity never helped anyone. But I know that my son asked a question today that I didn’t have an answer for. I know there are bigger and more difficult questions, I know the world has bigger problems than one little boy without a working pancreas. I know that my readers have been asked impossible questions. I don’t have answers, but I do know this: 

Parenting is flippin’ hard, and we’re doing our best. Sometimes that’s just all that matters. 

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