You have a few years under your belt as a parent of a child with special needs. Life is… stable. Then something unexpected happens at precisely the most inconvenient time, and you find yourself not sleeping, contemplating which doctor to call next, figuring out what to do about work, and simply worrying. You’ve gone from steady and calm waters to navigating the unknown… again.
This is literally where I find myself this fine June evening wonder what in the heck has happened to the last couple months. Last time I remember looking up it was April. Where did May go? It’s like it completely vanished from my calendar.
As a mom, you wish time didn’t move so fast. You want these little mini versions of yourself to stay young and little and want to snuggle every chance you get. Time just doesn’t want to stand still, not even for a few minutes. The next thing you know, you’re missing an entire month. I mean, seriously? Where did May go?
Riley’s last day of school was last Thursday. Let me tell you, when she first aged out of Early Steps, I was terrified of placing her in the hands of the school system, but to my surprise, she did absolutely wonderful. Like most things in life, some days were difficult, but overall it was such a great experience for her and me. She sleeps better at night, she was getting all the same therapies, it was just a wonderful thing.
She’s been home and out of school now for a whopping 4 days. She had a seizure. Then she went and had another in the same day. Now for those of you following our story, you’ll know that Riley has infantile spasms. This was not her typical spasms. This was full on scary, should we give her emergency meds and take her to the hospital scary.
The unknown is a very real and scary place in the world of special needs parenting. Your mind goes a mile a minute and you just don’t know how to organize those thoughts sometimes. You start to think, “This is not right, this is not part of our plan, what do I do?”
Navigating the unknown of epilepsy is already difficult. Infantile spasms are notoriously difficult to control. Riley is on a multiple different medications that help ease, but not stop, the spasms. She used to have upwards of 20 episodes a day, ranging in duration of 1-6+ minutes. Now we have much less in frequency and length/strength.
This seizure was not an infantile spasms that we know and can easily stay calm about. This seizure was scary, and we weren’t prepared. We knew, the doctor’s had told us, that she would grow out of the infantile spasms. We were also told that they may change into a different type of seizure entirely. Yup, we were warned. Nope, still didn’t prepare us.
We don’t have a diagnosis of the type of seizure this is, yet. We’re in the process of getting it figured out, setting up a 48 hour EEG. We’ve been in contact with her neurologist, but we can’t get an answer soon enough. In a world of instant gratification, I just want to know right this second what’s wrong with my daughter and how to fix it for her. That’s not too much to ask, right?
If you’re just starting down this path, neurology is a guessing game. I know from experience, my daughters and my own. Sometimes things happen and it’s going to be a long road to figure out what the culprit may be. That doesn’t make it any easier for anyone involved. Some days you just want to pick up the phone, call the doctor and ask them “Why can’t you just tell me what is wrong?!? For the love God and everything good, just please tell me now!!!” A little dramatic?? You betcha! Lack of sleep, lots of stress, it makes you dramatic.
So how do you end up navigating the unknown? That’s the million dollar question.
I get it. It’s scary, like being sucked down a sewer drain by a clown holding a bunch of balloons, scary. But you’re stronger than you think, and you can do this. It’s perfectly normal and completely OK to be scared. Just keep it together, and focus on that beautiful child of yours. They need you, and just like the kick ass momma bear you are, you got this.
Assess the situation. Then prioritize the hell out of it. If you have a child with epilepsy, like mine, assess what’s happening. Time the seizure, know what to do in case of emergency. How long do you wait before administering emergency medication. Who do you call, do you have a plan of action to get to an emergency room near you, if needed. Have a plan of whom to take your other child(ren) to in case of emergency. Figure out what you need to do in order to best provide for your child in a time of emergency.
Try doing a dry run of possible scenarios. If Florida Power & Light can do dry runs for hurricane preparedness, then we can probably practice what to do in case of a seizure lasting longer than 5 minutes.
Navigating the Unknown
Navigating the unknown doesn’t have to be scary if you plan, stay focused and prioritize for emergencies. Make sure to have access to important documents when an emergency does occur. Keep papers with doctor’s names and phone numbers (have the after hours numbers easily available as well), important cheat sheet on your child’s health care.
Being prepared may mean a little extra work up front, but in the long run, if you need to make things happen quickly, you’re already prepared and you won’t feel so overwhelmed but the unexpected.
You got this, pretty Momma. You got this.