Expectations of Perfection

I read this post on The Mighty earlier this week about a mother who confessed that she often just doesn't feel strong enough for her son to meet all his needs. I cried through most of it because even though our contexts are completely different, I felt the rawness of this woman's story so completely.

Because I feel it too - completely inadequate more often than I'd like to admit. It irritates me when people say, "I don't know how you do it" or "I could never do what you do." Partially because it's not like there's a choice, and of course they would if they had to. And also at the same time, perhaps somewhat contradictorily, I feel like no one is adequate for any of this. Definitely not me.

About five or six weeks ago, I failed to give Cyrus his evening dose of medicine. This is the only second time we have ever completely missed a dose, but unlike the first time, the fallout was more severe. Basically, the next morning every time he woke up he immediately started seizing. He had four seizures in a three hour period, two of which required emergency meds. And the week after this event, his choreiform movements exploded in intensity as they sometimes do after severe seizures. This makes it harder for him to go to sleep, which in turn causes more seizures.

His seizures themselves have also changed from mild partial seizures to stronger tonic seizures - the first seizures caused by the missed dose could have triggered a cluster. He's now back up to 5-8 seizures per day. And it's hard not to blame myself for all of this. My husband keeps telling me that I can't expect myself to be perfect. That we're both going to mess up sometimes. And the fact that we've only messed up twice in two and a half years is an amazing accomplishment. And intellectually, I can agree with all that. It doesn't change how I feel though, especially when the consequences for messing up even just once have become so incredibly severe. (On the other hand, we now have a pretty good idea how much his meds do in fact help him). How can I not expect myself to be perfect?

And you know, if giving him medicine was the only thing we had to worry about in his care, being perfect might be slightly more attainable, but it's not.

Daddy is still the best!

It took six weeks to go to all the specialists' offices to get all the medical orders we needed for Cyrus to start school. This is a task that apparently has to be redone every year. When Cyrus was shown to have a high level of crystals in his urine we had to take him to a sonographer to check for kidney stones (he's clear!). We also met with the neurologist last week, to see if we couldn't get this latest cluster of seizures back under some semblance of control and she is suggesting that he get a VNS implant, which may require surgery.  A pre surgery consult appointment has to be made to discuss if we want to pursue this. In the same week, his 30-day IEP meeting is taking place and his IHSS hours are up for review which involves a meeting with the social worker from the county.

I've already used up all my personal days this year, so I am unable to go to any of these. I always give Kyle my list of questions, but since I don't hear the answers, I can't write a list of follow up questions. And that just makes me feel insecure and unqualified to make decisions regarding his care.

And then the sales person from the wheel chair calls once a month, and wants to know what progress I've made on getting our very needed wheelchair van funded through the Golden Gate Regional Center (GGRC).

I usually dread this call, as it is a reminder that another month has gone by and I've made no progress at all. But this month, I've actually done a lot, but despite this, I still don't feel any closer to success. The process is long and the GGRC requires that we apply to three different charities, California Children's Services, get denied from my own insurance, and then meet with their OT who will determine if Cyrus actually needs it before I can get funding from them.

The bus has arrived

We've applied to the charities. This was an involved process itself - as for each one I'm basically applying for a grant. The nice thing though, was I didn't have to care if they say yes or no. Either way, I'm closer to my goal. And CCS has a rejection form letter they will just hand you, if you ask for it.

Kyle has tried endlessly to get any kind of response from the insurance company who keeps changing their requirements of what they need from us. First, they wanted a prescription, which we obtained. Then they wanted the code for the piece of equipment in question. We talked to the wheelchair van dealership and they told us there isn't one - that usually when there's no code insurance companies just automatically deny coverage.

Except for my insurance company, Anthem Blue Cross of course - they won't give us an answer one way or another until they have "reviewed" the request, and they are apparently unable to review the request until they have a code. Even when we explained that we really only needed a denial letter from them - that we don't actually need them to pay for anything, they refused to consider it.

"Will you put that you refuse to consider it in writing?"

"No."

After lunch, we go for a walk

I just want to start crying. Why is so hard to get a denial from my insurance? Why is getting services and aid so hard in general?

I have asked for help from other parents who said their insurance was only too happy to deny them coverage on something. I've also been in correspondence with people who work at CCS who are experienced at dealing with insurance companies specially with regards to equipment, but they seem to completely misunderstand what I'm asking for help on. And I've reached out to our assigned social worker who has not responded to any of my pleas for aid with more than "I'm looking into it" that last few times she even responded to my inquiries.

So yeah, I feel inadequate. Incredibly inadequate.

Then this well meaning new special needs mom friend I made is telling me, "Kari, you have to get help now. You have to get actual respite workers (who we've had trouble finding) in there now before you burn yourself out. And I agree with her, but that's also more bureaucratic fighting, and I just don't want to do it. It feels right now in this moment, so much easier to just do it ourselves. She insists in the long run that this will not be the case.

And intellectually again, I know that she's correct, but it doesn't change the fact that getting help is hard, and yet another thing to do, and another place for me to feel too small to handle all of it.

Having fun with his teacher, Mitzi!

All that being said, Cyrus himself is doing really well. Even though he's having more seizures, they mostly don't seem to be slowing him down. He has been going to school for about a month and has adjusted well. He has a fantastic teacher who he is already smiles to in greeting. She also sends us home a recorded report everyday with an assistive communication device that allows us to send messages back to her the next day (I think they're also using this to train us parents in how to use the assistive technology they are teaching Cyrus). He has a nurse who has already had to care for him through a status seizure and rides the bus with him every day, and he still gets PT, OT, and speech therapy. He's pretty wiped out by Friday, and slept in this morning until ten! Which was positively luxurious for his parents too!

We did find out that Cyrus needs glasses because he's apparently pretty far sighted, and now when they are on we're rewarded with more social interactions such as smiles and vocal play. We will find out at our 30 day IEP this week if Cyrus qualifies for vision therapy as well.

Our random medical tests in an attempt to figure out what Cyrus used to be so unhappy about did reveal that he may be lactose intolerant, or may have kidney stones, but as mentioned before we ruled the latter out already. Since we have removed dairy from his diet he has, in general, been happier and more content again. Yay for small mercies!

He seems to be going through a growth spurt - has put on three pounds since December, and is now 3 foot 4 inches tall. And just the other day, I caught him sucking on a finger in his mouth. He's never done this before! He's actually self-soothing with his thumb or pointer finger pretty consistently now. He'll sometimes even put himself down for a nap!

And I keep trying to remind myself that even when things are not perfect and even when I cannot be perfect, there is much to be appreciative and proud of as well.

Perhaps I should follow Cyrus's example and learn how to self-sooth!
Oh wait, that's why I write this blog.