So…I really wanted to write a happy post today, but I’m a little frustrated. Instead, I’m going to vent.
There’s a reason so many families with special needs children end up divorced or in therapy or both. Marriage is hard enough, but add in a child who needs extra attention and loads of medical and therapeutic intervention and the challenge multiplies. It’s not just the obvious stuff.
Sure, some of it is. The husband feels financial pressures from being the bread winner because sometimes the mother can’t work outside the home. Kenna came home from the hospital on oxygen, a heart monitor, and a feeding pump. She wasn’t going to any day care. She didn’t need a babysitter or a nanny. She needed a nurse.
Luckily, I was able to supplement our income as an author. Then I saved money by learning to market my books, and other authors started hiring me to help them too. It worked enough. Over time, with the fluctuations in the market, my income has increased and decreased, but it’s getting better again. I’ve found my groove. I think. I hope.
Even now, I couldn’t go back to work if I wanted to. There’s no way I could make enough for it to be worthwhile, for one. And what employer would offer me the flexibility I need, for the other. This is one of the many things Sam doesn’t consider. Three days a week she has school and I have to drop her off at 7:15am and pick her up at 2:30pm. There’s no busing for her. She couldn’t handle it with her sensory issues. I carry her into the building every day. She gets freaked out and refuses to walk. Then there are all the doctor appointments. Sooooo manyyyyy appointmentssss! Now we’re adding in therapy with OT and PT on Mondays and we’re not sure which other days, plural, for speech. Suffice to say, on Mondays, I’ll leave the house at 9:30 and probably not return until close to 12:30 or 1pm. There’s half a day right there.
Ah, but aside from the money arguments and your basic who does more and works harder argument, for which he doesn’t have a leg to stand on because if he goes to work and comes home and I do everything else…it’s me, there’s also the rearing of the child. See, raising a special needs child is different. Discipline is different. Expectations must be adjusted. One of us isn’t so good with that and teeters between frustration and over-indulgence. *raises hand* Not it. Yeah, I spend a lot of time trying to teach him how to parent. It’s a good thing I get roughly four hours sleep a night.
Most of all…there’s that. Kenna’s meds have stopped working. We had a glorious three month run. Sam, whose sleep is not impacted at all from her being up from 3:30am on, argues with me on a daily basis. I’m tired of hearing about it.
Sam: You need to go back to the sleep doctor.
me: We already have an appointment.
Sam: Well, it’s probably not even the right diagnosis.
me: We had a sleep study. It’s the right diagnosis.
Sam: The meds aren’t working.
me: Obviously. We’re going to have to increase her dose.
Sam: No. They need to give her something different.
My blood is boiling by now. I go to all the appointments. I meet with all the therapists and doctors. That he doesn’t understand isn’t because I don’t share with him, but because he mostly doesn’t want to be bothered with things he believes I’m handling. So…let me handle it. I don’t need to be micromanaged. It irks me. And I say this because I’m normally too polite to say it pisses me the fuck off. Only now, with little sleep…I’m starting to slip. My normally refined and controlled demeanor is cracking and my edit button is on the fritz. Because this is how the rest of the conversation went down the first night of the argument.
me: Do you have any idea how many meds there are to treat her?
Sam: No, but they need to try something else.
me: Two. There are two meds.
Sam: There has to be something more. They can just give her something more.
me: We’ll be changing the dosage.
At this point he began talking over me and continually repeating himself while I was trying to get Kenna to sleep. It just kinda slipped out…and yet I meant it completely.
me: Shut the fuck up, Sam.
See, I added a curse word, his name, and the phrase I never use and raised my kids to believe was horribly mean. I’m going to hell. Oh, but he stopped talking. I think it was the shock. I think he realized how strongly I felt about the situation. And the shock and silence lasted for all of one night. Because the next few nights we’ve had the same argument and I don’t even respond because I’m not only tired of listening to him spew the same non-sensical, uninformed crap on a nightly basis, I’m tired of trying to counter it with reason, logic, and information. What do I know? Um, pretty much everything when it comes to caring for Kenna in every way, shape, and form. I’m in the trenches.
Luckily, I think the fight finally came to a head this morning before he left for work. He started the same argument again when I mentioned I’d been up since 3:30am. It’s not all bad. You have no idea how much I can accomplish once she falls back to sleep around 5:30am. I managed to get in a workout (three days in a row), and do some of my social media sharing. I invoiced authors. I picked graphics for projects. And now, I’m writing a blog post. I’m an animal.
Sam: She needs a different medicine.
me: There’s only one other medicine.
Sam: Well, she needs to be on that then. They need to try something else.
me: Stop. Enough. You don’t know what you’re talking about.
Sam: Will you just listen to me?
me: Sure. Then will you listen to me?
Sam: Fine. So…they need to try different meds. Maybe Lunesta, or Ambien, or Clonidine.
At this point he’s naming off all the meds he’s ever been on to treat his undiagnosed sleep disorder. Very helpful.
me: Are you done?
me: Good. She can’t be on Clonidine. It’s meant to lower blood pressure and she has a heart condition. They need to be careful of drug interactions. The other two are meant for adults. They don’t give kids all the same meds as adults.
Sam: They can try a small amount. Just cut a bit off a pill and try it.
me: Really? *sighs loudly* The FDA has to approve meds for use.
We went through this with Kenna in the NICU. The doctors had to get FDA approval before they could give Kenna some medicine that escapes me. And I remember thinking how strange it was that the FDA would have to decide if my baby could have what she needed to live. Scary stuff. Yet at the same time, necessary. I get it.
Thus, I’m frustrated. He doesn’t understand the system. It feels like he doesn’t understand Kenna. And often, I wonder if he’s not questioning my ability to handle the situation. Still, I’m not backing down. I’ve got this. Sleep doctor on April 15th. We’ll get Kenna’s sleep figured out. Maybe I’ll get back to holding my tongue. It could happen. As for Sam, he’s gonna have to figure it out. I can’t do it for him. I’m being as patient as my sleep deprived, overwhelmed self can be.
So what’s my blessing? It has and always will be Kenna. She’s worth the sleeplessness, the stress, the fights, the appointments which force me to wear something other than yoga pants, and all the rest. Kenna.