This year, it’s time to take action. It’s time to pull our heads out of our asses and make some plans for world domination.
How? By telling the world, not what we want to do this year, but what we will.
So what will YOU do this year?
In 2020:
I will love everyone – strangers, dear ones, and myself – on my worst and best days.
I will keep the faith, in all ways.
I will seek adventure. I will seek new travel opportunities. I will adventure through created worlds – mostly through stories of fiction – and discover new places, people, and times. I will cease seeking to exert control over everything, thus making myself more open to spontaneity and going with “the flow” of life.
I will grow, unfortunately not in height, but in more ways than I can begin to imagine.
I will learn the importance of patience. I will believe in patience as a virtue. I will understand that good things come to those who wait, and I will wait. I will be proactive in my waiting.
I will find balance. Balance between work and pleasure. Balance between emotions. Balance between my head and my heart. Balance within. I will find my force.
I will practice openness. I will open my mind to new ways of thinking and new ideas. I will be less restrained, in most ways.
I will work to further my dreams.
I will live and write my story as my best self and in the best ways possible.
6:15 AM – My boy wakes up. Deep inhale. What will the day be like today for him; for us?
8:00 AM – Exhale. The noise deadline our downstairs neighbor has imposed (“Can’t you find some way to keep him quiet?”) has passed. Now he can play in his room.
8:15 AM – Inhale. He is on the bus for school.
Most of this past month I have gotten multiple calls or emails during the morning hours- “He kicked a student,” “He climbed on the desk,” “Other parents are complaining,” “He hit a teacher,” “I’m trying to understand his disorder,” “We really love your son and want to help him, but we may need to discuss a more restrictive environment.”
If those calls do not come by 12:55, when he is in his afternoon small-group special ed. classroom, I can exhale.
4:30 PM – Inhale. Hoping for a smooth homework, dinner, and bath routine.
If all goes well and no one is screaming by 7:00 PM I’ll exhale.
7:30 PM – Inhale. Just a bit longer now – PJs, brush teeth, read story. Melatonin has made this routine so much easier at night, but does extend the stretch of time between wakeup and noise deadline in the morning.
8:30 PM – He sleeps. Deep exhale. He has probably been corrected many more times than he has been praised. He has told me detailed stories about school, Thomas the Train, the solar system, insects. He has gone to therapy yet has not been able to keep his body still for more than five minutes all day. He has called me “cute little Mommy,” but called a teacher’s aide “a moron.” He has gotten along better with his little sister and lost his first tooth. He has heard and spoken the words, “I love you.”
So, I got my medicine adjusted like I said I was going to.
After a hilarious rigmarole of being referred to a doctor who only saw seniors, then one who only saw children, then one who didn’t take my insurance, I finally ended up with a really sweet doctor (who is the tiniest woman I’ve ever met).
She added another antidepressant to the one I was already taking, and it seems to have helped the symptoms in question – I’m still sleeping odd hours, but it’s only for 8-9 hours at a stretch, not 12-14, and my default state is “bored” instead of “bored and sad and mopey and lonely.”
And yet…
(There’s always an “and yet” with mental illness isn’t there?)
(ed note: Yes. – AB)
And yet I’ve not managed to quite nail things down. I’ll stay up late without realizing how late it is, then sleep until 4 or 5 the next afternoon. The new medicine causes insomnia, so I was warned to only take it in the morning. But if I don’t take it when I wake up at 4 PM, then I’ll just sleep even more. If I do take it, I’ll be up all night and sleep late the next day. If I do manage to wake up early and take my medicine, I’m so tired that even the medicine can’t keep me up and I pass out around noon and wake up at 7 PM (which is what happened today).
I just want to wake up in the morning feeling at least somewhat rested and get tired at night being able to fall asleep. Since when is that such a massive thing to ask? If I could just do that AND have my medicine killing off the sadness and apathy, then all I’d have to do is muster up the motivation to do laundry and clean my room and make it look like a human being lives here!
To top it all off, I’m moving to North Carolina within the month. My best friend is moving back into her childhood home, which she inherited when her dad died, and she’s offered to let me live there rent-free if I cover half the bills. Her area has a much better economy than mine, so I could find a job more easily. And there are nearby schools where I could get either an associate’s or a second bachelor’s degree in the field I want to move into.
It’s too good an offer to refuse, so I’m cashing out my savings and heading up there as soon as she gets moved in and ready.
And yet…
What if it all falls apart?
What if I can’t find a good psychiatrist nearby? I don’t even know what my insurance situation would be before I got a job.
What if I get on this same fucked up sleep schedule again and my room stays this messy and I’m awful to live with and she hates me?
What if I still don’t find a job and I burn through all my savings?
What if I get the degree, and take out a bunch of loans to do it, and still can’t find a job even then?
I don’t know. I was so sure for awhile this medicine had made things a lot better, but I sure don’t feel any less afraid.
His brain stem is deteriorating, a side effect of the chromosome abnormality he has. Twenty-nine surgeries haven’t been enough to save him, though they have bought him more time with us.
We are told that he’s the only child in the world who has his conglomeration of medical conditions (the chromosome abnormality, spina bifida, a connective tissue disorder, chiari malformation, intracranial hypertension, and another half-dozen minor diagnoses).
The amount of pain medication he receives every day is a drug-addict’s dream, is administered around the clock to keep him from experiencing pain. It is so beyond awful that I don’t have words to express my feelings. Watching him decline is the worst thing I’ve ever experienced in my life and that is saying something.
As if that isn’t enough, the two children my family adopted from Ukraine eighteen months ago have a lot more “going on” than we were told about.
My two-and-a-half-year old has Down syndrome, autism, and reactive attachment disorder. She functions at the level of a ten month old.
My four-and-a-half year old has Down syndrome, a heart defect that wasn’t repaired properly, systemic juvenile idiopathic arthritis, atlanto-axial instability, autism, tethered cord, syringomyelia, mild hearing loss, and is considered both medically complex and medically fragile.
We’ve been told repeatedly by numerous specialists, that she isn’t going to have a long life. She functions at the level of an eight month old.
Neither of the girls walks, talks, signs, eats (they’re g-tube dependent, just like my six-year old) or interacts well with people (they interact, but only on their terms).
When we adopted the girls, we knew they had Down syndrome and that the four-year old had a heart defect.
Everything else has been a big ‘ol surprise since we brought them home. Honestly, it feels like discovering new problems with our kids never ends.
We didn’t know our son had this chromosome abnormality and would die soon. If I’d known this, I wouldn’t have adopted him, or at least not when I did.
To top it all off, my marriage is falling apart. I know I should care, but I don’t have the emotional capacity to handle it. I just want him to leave me alone. I don’t want to have to deal with him on top of everything else.
I’m struggling.
I’m struggling in every sense of the word. I don’t know anyone that understand how this feels.
Yes, lots of people have a medically-fragile child.
Yes, lots of people have large families.
Yes, lots of people have multiple children with special needs.
But I don’t know any other people who have a large family with lots of kids with special needs, some who are medically fragile, with one who is terminally ill?
If there are, would someone please point me toward those people? I REALLY could use a friend, someone who’ll say, “This totally sucks!” along with me. I know people don’t know what to say to someone like me, but I still want them to say something – the silence is deafening.
Until…. that deep dark place got worse. Now we’re fighting every day to keep him out of inpatient hospital stays.
I walk on eggshells when we talk because I don’t know what is going to upset him. I’ve had a continuous migraine for the past five days because just thinking about him makes my own anxiety sky high.
He’s a good kid and has such a good heart – I just don’t know how to help him.
Does anyone have any ideas? I am all out of ideas myself and I’m mentally worn out..
