When Mother’s Day changes

When you’ve only ever been blessed with healthy children, you know Mother’s Day will mean handmade cards, presents wrapped in Kleenex, and maybe a gift that Dad helped with. I know because here I sit, the day before Mother’s Day and my three girls are whispering about the gifts they made at school and asking me what they should tell Daddy to shop for.

It’s sweet. I’m blessed.

But this year all I can think about is last year. My husband had flown to another state to be with his family after his dad had a major emergency surgery. He had been gone for a few days. Our little man, Bo, had been handed a scary diagnosis two months earlier and had been put on a medication that had changed his personality completely.

But at least he was seizure free. A whole two months. I was breathing easier even being the only adult in the house.

And then I saw it…Bo was walking through the yard. His eyes rolled up in his head and his head drooped. His shoulders rolled forward. He kept walking, but I knew something wasn’t right.

I’d heard of seizures called drops, Bo had even had one or two in the minutes before a grand mal seizure, but never just walking around.

My stomach sank. My heart hurt. It was a new seizure type.

And then it happened again.

I called my husband in tears to tell him. I called the on-call neurologist who put him on new medications and raised his current medications.

I cried myself to sleep that Mother’s Day… feeling like a failure. Like I let another type of seizure “get him”.

The summer of 2017 was incredibly hard… those droopy-headed half-seconds, officially called atonic seizures, turned into bigger muscle loss. By July he was having over 25 of these seizures a day, and they were lasting long enough that he was falling in his face with 90% of them.

The story continues from there, but that’s a post for another day.

I don’t remember my first Mother’s Day with all four of my kids in my arms, but I doubt I will ever forget the Mother’s Day that broke my heart. That Mother’s Day will always mark “the time the drops started”.

Unfortunately, as moms, we can’t remember the happy moments of every special day, but we can easily recall the bad. So this Mother’s Day, dwell on the happy, ask someone to take a picture, write a note in the calendar about what you did…

Remember the “Happy” in Mother’s Day

*This post was originally published on my previous blog: The Strong Mom Life

To ER, or not to ER

So there’s this weird inner struggle when you have a medically complicated child, it’s not the same with your other kids.

Our first three kids, all giggly girls, get sick from time to time, usually once, maybe twice a year. We’ve been fortunate on that end. And when they get sick with a stomach bug or a cough, we pretty much always treat the symptoms at home and keep them comfortable until it passes. No big deal.

With our son, who has something called Dravet Syndrome, we have this crazy internal and verbal struggle with what steps to take when. It’s hard to know when to call a doctor, but as we have no after-hours type care available in our town, if our reasoning brings us to a point of “he probably needs to be seen”, we have no options except to head to our local emergency room.

And no, there are some times when we have to go that aren’t exactly emergent, but we also know all too well that if we don’t play offense, it will become emergent.

Tonight struggle was brought on by an older sister who had a tummy bug yesterday and spent most of the night bent over a bucket. This morning, although she had stopped, he cheeks started to flush and she felt worse than yesterday, even though the vomiting had stopped around four this morning. And this afternoon and evening, she’s sporting a fever.

How does this affect our son? He’s about 24 hours behind her in symptoms, and started throwing up around eight o’clock this morning. And here is where the struggle begins…

“He’s been throwing up all day, should we take him in?”

“Well, he’s kept his anti-seizure meds down all day, so that’s good.”

“Right, but if he gets a fever (and for him, as seizure will hit as soon as he crosses the 100 degrees mark, sometimes the 99 mark) the meds aren’t going to carry him through without a seizure.”

“So should we take him in?”

“I don’t know, it’s really not an emergency right now.”

“True but if he gets a fever and has a big seizure during the night we’ll have to call the ambulance and wake the girls up, and wake grandparents up to drop off the girls.”

“Yeah, but I hate to take him in just to run tests and send him home with instructions to “just wait it out”.”

“But what if it is something serious that they can treat to help?”

See where I’m going with this?

-signing off from the mom who is waiting for hubby and the boy to get home from the ER….

*This post was originally published on my previous blog: The Strong Mom Life

Mom

The word mom has so many meanings. For some, it’s who you have, for others, it’s who you miss. Some wish they were a mom, and some have no desire to ever hold the title.

Then there’s us. Me, maybe you, the one who IS mom.

From the moment you see that positive pregnancy test, you are forever a mom. Whether you carry your baby for nine months or you say good-bye before you’ve met, you are a mom.

From the moment you saw a picture, or a case manager places that child into your life… that’s it, your heart and your soul belong to that child. You are a mom.

And the thing is, you never know how hard it’s going to be. There’s no way for you to know, because until you’ve looked at that child that is yours, you only know about the physical needs. No one mentions the conflicted feelings of not being a good enough mom, no one mentions looking at two (or more) options for your child and not knowing which is better or worse.

Yes you know you need to cook and clothe and keep this little person functioning. You know you need to raise him or her to be a member of the community.

But what people fail to mention, is how Strong you need to be.

You need to have a strong heart and mind to not go crazy when you are functioning on almost no sleep, while that little bundle of joy screams their head off.

You need to be strong when they are doing something they’re not supposed to, and you have to discipline their adorable little self.

You need to be strong when they are learning how friendships are developed… when they come home from school crying that they have no friends, and they just wish someone would play with them.

When they start driving… you’ll really need to be strong (and I’m not even to that point yet… but I know it will be hard) and not just follow them in your own vehicle everywhere they go.

It keeps going…

There’s also a type of strong that every mom (except an amazing few who choose the path) prays they won’t have to be. The mom of a medically fragile child. That’s a different kind of strong. No less, no more, but it’s different.

I have five children. The one who first made me a mom lives in heaven, we’ve never met face to face. Three healthy girls followed, a then a boy, one we thought was healthy until we were shown otherwise when he was 8.5 months old.

That’s when life changed. That’s when I became that “other” kind of strong mom.

*This post originally published on my previous blog: The Strong Mom Life

Doin The Mom Thing

Hello! My name is Kristi, and after many years of doing many things, I’m now just doing the mom thing. I did the college thing, I did the work thing, I did the photographer thing, I did the business owner thing that went along with the photographer thing, I did the stay at home mom thing, I did the working mom thing, and now I’m doing the special needs mom thing with the stay at home mom thing.

Sometimes though, I still want to do my own thing. The crafty chick thing, the relaxing thing (if I can remember what that is), the volunteer thing.

I can’t get away from the thing that I’m currently doing, and I wouldn’t want to… and this blog will be my accounting of how I handle it all.