You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight…Rascal Flatts
It’s been a rough go lately. Between Nik’s lingering non-specific illness, sleepless nights, Niksdad’s demanding nursing school and clinical practicum schedule, and the specter of school not yet completely eradicated, I can honestly say that I have indeed felt helpless and like I have lost my fight. Don’t get me wrong, I won’t stop fighting for Nik, for my family, for myself. Well, if I’m completely honest, maybe myself a little —it’s always easier to put myself last when there are big challenges in our life and it feels like something has to give. But I am tired —too tired to stand today. (Forgive the self-indulgence which follows.)
On so many levels Nik is doing great. He’s recovered from our Texasinine dining experience and he’s still the same happy-go-lucky little boy he’s always been. The play and laughter are still present, though the eating anything by mouth still is not. He’s doing so much better now that he’s not in school. Except…
I know I’ve written about it a few times before so forgive me if I repeat myself —I’m too lazy to find the posts to link to. Nik’s been battling this odd “affliction” that no one can seem to identify. The lymph glands behind his right ear are chronically swollen —some days worse than others and some days causing more discomfort than others; the two are not necessarily mutual. Nik also has multiple nights of interrupted sleep from this same “affliction;” he will wake screaming in pain and hitting his head or biting his hand really hard. When this happens he is usually inconsolable. Advil given through his g-tube usually mitigates the worst of the pain after a while and he is able to go back to sleep for, oh, another hour or so. Then it all starts over again.
This behavior is not limited to overnights; it happens sometimes in the middle of a play or therapy session. This morning, Miss M got to witness it firsthand during feeding therapy. I thought she was going to cry because she was so upset for Nik. As quickly as it comes on, sometimes it can go just as quickly.
Throw in the lingering low-grade fever Nik’s been running nearly every day now since mid-September —in conjunction with the upper respiratory gunk, the ear infection, followed by the GI bug. Well, you might imagine that we are all a bit frazzled and concerned. Something is going on but no one seems to be able to tell us what.
Then, there’s the ugly specter of our school experience which isn’t quite over. You see, though we’ve had him home from school since September 17th, we haven’t yet officially removed Nik from school. I guess, technically, they can’t cite us for truancy since he’s not legally required to be in school. Still, the district might be able to argue that we are interfering with their ability to provide Nik’s free, appropriate public education (FAPE). The only reason this might be important is if we need to keep them in the picture after all. Though, one could argue that Nik’s IEP as it stands right now —still missing a speech/language/communication section with any evaluation of present levels of functioning as well as no stated goals and objectives, PT and OT goals which do not presume competence and do not address Nik’s significant sensory needs —could hardly be construed as a promise to deliver FAPE even if Nik were in school seven days a week!
I am still waiting for answers from Legal Aid. Meanwhile, school has scheduled an IEP meeting on the 15th for us to officially remove Nik and to “review the educational services for which Nikolas will no longer have access.” Ordinarily that wouldn’t make me anxious except I know that Medicaid now has a copy of the letter of medical necessity from Nik’s doctor. You know, the one that says he shouldn’t be in school due to his health? Yeah, that one. I am worried that they are going to try to use that as leverage to keep school in the picture and maintain responsibility for providing services. If that happens, we are back at square one as far as IEP’s go.
I can hear the old Clash song in my head, “Should I stay or should I go now? If I stay there will be trouble. If I go it will be double…” ARGH! Why can’t it ever just be a simple, cut and dried situation? And worse, why do I feel like the floor is constantly shifting under my feet?
I need to take some time to write out the pros and cons of each decision but I feel like I don’t have complete information for either case. On one hand, having school involved will mean slugging it out for an appropriate IEP; I already know that will involve due process and, possibly, litigation. Still, it would resolve the issue once and for all —hopefully in favor of increased and more appropriate services and supports for Nik. There are so many unknowns and the process can take so long. It could, possibly take us a year or more to get things sorted out.
On the other hand, if we simply cut school out of the picture, we run the risk that Medicaid won’t or can’t cover what Nik needs. Can we muddle our way through to cobble together some homemade program for Nik? Quite possibly, but it’s daunting and could have some pretty significant gaps in it —especially regarding speech/language/communication.
Why can’t I make a decision and stick with it and trust myself implicitly? Why am I so afraid of making a significant misstep? Why am I feeling so weak right now?
Why are you all so damned far away that I can’t come over and cry on your shoulder or drink tea (or something stronger) in the warmth of your living room or sit in the dappled sunshine in your back yard and recharge? It feels so hard to pick myself up and brush myself off right now but I know I must. But it’s lonely. Very lonely.
Even this doesn’t seem to help me today. Sigh…
Oh, my. Big hug, then I’m gonna tell you to breathe. B R E A T H E. Really. It’s all going to be okay!
I think it feels overwhelming because IT IS. Some of these decisions are yours to make (like telling people about Nik’s needs, and his health concerns, and things you see as his mama. Shout them from the highest moutnain top until someone hears you!)
Other things can’t be decided because there are too many variables. The school may, or may not, fight you. Medicaid may, or may not support your decisions. Nik may, or may not, benefit from either home or school. There are too many things still up in the air to make any kind of plan; yet.
You will begin to get answers, and things will start to untangle. The school will tell you its position, then you can think about it and decide what you feel is best. Same with medicaid, and all else.
Too, kids grow and change. What is right at this moment, might not be right for the long haul. So it’s good to be flexible, and make your decisions based on the best information you have at the time, and you don’t have all that information yet…you get the idea.
But I don’t think this is what this post is really about. I think it’s a mother feeling powerless to help her child, and I know what that’s like, sister! I wished you were closer too, so I could make you a cup of tea and slip you chocolates (when the kids aren’t looking because they are terrible chocolate gobblers.)
I’m thinking of you…hang in there!
No chocolate here, ’cause of allergies…but I have tea. When do you wanna come over?
Great comment above…I’ll just agree with Jennifer…BREATHE and take it one day at a time. Hugs to the “Nikfamily”
*the deleted comment above was me. I made a reference to location, then thought you may not want where you live public so I figured I’d err on side of caution and remove my comment.*
Mom2R that was sweet of you. Jennifer, you’re right..I should have titled the post something like “Feeling overwhelmed and just need to vent…” LOL
And today is another day…
I’m late to the game but just wanted you to know I’m thinking of you and hoping today is a better day.
Have a drink (stronger than tea) and have one for me too while you’re at it.
I’m also late, but wanted to offer long-distance hugs of hope and perserverence. Take a deep breath and prioritize. And if you always put you last, you won’t have the energy or even desire to do the rest, so somehow, even if you have to lock yourself in the bathroom with a cup of tea with the timer set for 10 minutes, take some time to decompress.