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.
Okay, that’s a total lie. I like many things more than a bargain, up to and including sleeping, heavy sarcasm, sitting on my ass, strawberry-frosted donuts, The Twitter, mocking the founder of Facebook Mark Zuckerberg, mocking myself, obsessing over cardigans, Vicodin-chip cookies, Hostess orange-flavored cupcakes, designing photon rings in my backyard, my roses, test-driving cars, napping, thinking about napping, and watching reruns of Law and Order.
But when I get a bargain, I get the rush that I’m pretty certain causes otherwise normal people to get up at midnight and stand out in the freezing cold to be the first in line to buy something abnormally cheap on Black Friday.
I just couldn’t bring myself to actually do it, rush or no.
I’ve thought about why I wouldn’t do it most of the week (still flat on my back in pain)and I think it boils down to not being a Team Player. I’m just not a Team Player. Shut your whore mouth.
Even if I could get my spot in line and guarantee that the item I wanted would be mine ALL MINE, I would be carted off to jail well before the doors opened.
How the hell do I know this without ever having stood in a single line? SIMPLE. I read your blogs. You guys DO stand in those lines. And between my Pranksters are peppered The Crazies. Aunt Becky don’t play with The Crazies. Especially the PUSHY crazies.
The very moment some asswad threw an elbow, tried to cut in line (HATE! THAT!) or made a comment about my happy pants (they have hearts on them!), I’d be all, “Nice teeth, Cleatus, why don’t you and your recessive genes kiss my white ass and crawl back under the rock that you crawled out from under.”
Then, his fifteen cousins would come over and beat my very small-wristed ass into a bloody pulp. Not before, of course, I got in a couple of squirrelly kicks. Then the cops would come and we’d all get hauled to jail and I wouldn’t end up with the electric back-hair groomer I’d so desperately wanted for 90% off.
What a mess.
So instead, I’ll sleep leisurely in and when I wake up, I’ll catch a few shitty sales online. None will give me the same sort of thrill that getting my nose-hair trimmer would, but I really need to let my surgical scar heal before I can go to jail. That way, I can avoid being someone’s bitch by beating the shit out of someone when I first get there.
It’s not the same, I know, so instead, I’ll live through you.
Tell me your stories. I’m sure someday I’ll go shop the Black Friday sales and bring a video camera to capture it all for maximum hilarity (for my blog, of course). Hopefully Cletus will avoid the lens when he beats me silly.
So tell me all about your experiences with the sales.
My delicate wrists are going to live vicariously through you this year.
Those tables, forever missing one, are each welcome to share their loved one with us so that we may never forget.
I’m asking you today to pass this post around to anyone who may need it, you can use it if you need it, and you don’t have to have been the parent to feel the loss.
The way I generally organize these precious names is pretty easy:
Name, Parent’s Name, Date of Birth, Date of Death, Cause of Death, a Picture or 3, and if you feel like it, a bit more about your child. Who they were, what they loved, what they hated. Anything you’d like.
You can either send the information to me, becky@bandbacktogether.com or you can use the online submit form. Or, you can lurk. All are acceptable and all are welcome.
One of those things that I always figured I’d do when I was bored and had scads of free time, which, you know, I’m just swimming in with my three kids and houseful of pets, was to learn to decorate cakes.
I somehow forgot when I was hatching my Great Plan, that I have absolutely no eye for detail and have about as much fine motor skill as my poo-eating dog. But yes, in my head, I was going to be the next star baker.
Just like I was going to be the next Rembrandt, Britney Spears, and uh, Martha Stewart, because all of those plans were SO SUCCESSFUL.
But when I saw that I could buy something that fit my “I never got an EZ Bake Oven” fix AND test my prowess as a Master Cake Baker, I was all over it. (if you have no idea what I’m talking about, go here)(then come back)(and you should know that I do love me some Pioneer Woman)
Really, I didn’t see how I could go wrong. Except that a 29-year-old woman with a full kitchen of her own had bought a toy cake bakery. That seems all kinds of wrong when you put it THAT way.
But let’s not dwell on the negative here, Internet!
Microwaving, AWWW YEAH!
Now, see, THAT is the kind of cooking I can do. Short and sweet. None of those wonky STEPS that I can misconstrue or FORGET because I’ve accidentally wandered off to see what happens when I put the cat in a box.
While I don’t know why someone would want a pamphlet of “DUFF” inside a box clearly marketed for children, I suppose that is neither here nor there. He seems a little, uh, CREEPY and vapid, doesn’t he? (I know he’s on the Ace of Cakes)
No accounting for taste, I guess. Which is why you read my blog.
While shit, man, that’s waaaay too many instructions. I don’t need to read instructions. Those are for sissies.
Why, isn’t that perfectly darling? A wee cake decorating set! I can’t figure out what most of the doo-hickies are for, but, you know, I AM READY TO LEARN. Providing I don’t have to READ WORDS and FOLLOW INSTRUCTIONS.
Well, THAT is fancy-pants. It’s either a toothbrush holder…or a sex toy. Kind of advanced for children.
Huh.
If parents can get outraged by the Fresh Beat Band, why not providing our children SEX TOYS!!1!! OH THE HUMANITY!!
Guess you know what I’ll wander off to do.
….
BRUSH MY TEETH, YOU PERVERTS.
Here we go, with some mother-humping yellow cake. That’s wicked yellow and I stirred it approximately 4.3 times before it was mixed thoroughly. Because that is the way I make cake, bitches.
Well, now, here I have expertly poured two thimbles of cake into the microwave pan where I shall bake it for exactly 30 seconds. How can this be bad?
(cue ominous music)
Well. That…uh, looks appetizing. It’s really a shame that I can’t make this blog post scratch and sniff, because this smells like burning hair.
nom nom nom SOYLENT GREEN nom nom nom.
The Soylent Green patties are, I should note, about the size that one might expect to feed a wee field mouse. I am holding my lens cap up for perspective.
Cue the old joke… “the food was so bad….And there was so little of it!”
In an effort to cover up the horrible yellow color of the cake, I have chosen blue as my fondant color. Note my expert mixing technique. I should probably get a medal from the Mixing Olympics.
This fondant looks like a pile of, well, blue…poo.
I’m certain that I can roll it out and make it look better.
Oh. Well. Um.
Maybe I should have read the directions.
I know, I’ll read them now!
Okay, that looks NOTHING like what I’ve got.
Uh. Well. I KNOW. NEXT STEP.
Icing. I can cover this with icing. THAT’S ALL. I bet it’ll look as good as new in NO TIME.
That looks a lot like we’re about to artificially inseminate something. WICKED.
My pre-iced cake on it’s pretty little platform. Doesn’t it look like, well, someone with no thumbs decorated it?
Scratch that. People without thumbs could do better. BLIND people without thumbs could do better.
Aunt Becky’s Weapon of Mass Destruction. The ICING GUN. Prepare to meet your MAKER.
Uh. WHOOPS.
I genuinely do not know what I did wrong here. It appears as though my icing gun misfired.
I, um, I swear guys, this NEVER happens to me.
(cue inappropriate jokes)
UGLY CAKE, PREPARE TO MEET YOUR MAKER, uh, PART II.
Awww! Lookit my whimsical, drippy heart! With some balls thrown on it for good measure. Because everything is made better with colorful balls and icing.
(go ahead)(make your jokes, people)
Ladies and Gentlemen, this is the reason that you do not want me to cook when you come to my house. THIS is the reason that I order takeout.
Because while this appears to have been done for comedic value, it actually was not. This was genuinely the best that I could do.
I’ve been with my husband for eight years – married for five of them. We have a beautiful four-year old son, three dogs, and a cat. For the most part, we are a happy family.
As long as I’ve known my husband, he’s had these episodes.He loses control, and snaps on everyone and everything in his path. He’s broken windows, phones, end tables, lamps – the list is never ending.
When these episodes happen, the man I married isn’t there.
He’s gone, and something else takes over. He’s told me on numerous occasions that he doesn’t remember what occurs during these episodes.
He can remember the episode, but he doesn’t remember his words or actions. He told his psychiatrist that he almost blacks out when he gets to that point in his rage.
She gave him some more medication, and basically said, “See you in a month.”
He feels worthless, and that makes him angry. He isn’t a talker, but when he does talk I can hear the anguish in his voice.
He says nothing happened to make him the way he is. Nothing terrible – nothing worthy of the rage inside him.
He doesn’t want to be this way, he doesn’t want to be anxious and hopeless and angry and sad.
But he doesn’t know how to stop.
It used to happen when he couldn’t find any weed. Then someone would come through with some, he’d smoke it, and the world would right itself.
That ended with a police escort to the local hospital.
He spent three days there, changing his medication and talking to someone for ten minutes a day. He attended group sessions, and when he came home, he was ready to be better.
It was a week before he had another episode.
And since then these episodes have been happening every 3-5 days. Some are more serious than others. The last time, he threatened to kill himself.
Unfortunately, that isn’t anything new, except that, this time, he also threatened his mother and I.
We’re going to try therapy, but right now, it feels like he’s a ticking time-bomb, set to go off at any second. From the outside, I know it doesn’t look like he’s trying but he is, he really is.
So this is where I need help, The Band:
Do I stay, or do I go?
Do I walk away from my husband because he’s sick? Or do I stay, even if it’s to the detriment of my sanity, and my child’s well-being?
I don’t know what to do and I have no support network.
My son’s father was never in the picture, and my mother is a recovering addict – currently incarcerated. My godmother, the woman who raised me, is dead. I have a brother, but he has no job, and no home.
My best friend was witness to the gun incident, and has mostly given up on me. She told me that I’m codependent, and making terrible choices for my child. She thinks I should leave my husband, like she did. But her husband was an alcoholic – mine isn’t.
My in-laws have been terrific. Any time we need somewhere safe, their home is always open. But they are elderly – one of them is in a wheelchair. I feel I can’t burden them with this. I feel I am making them choose between their son, or their grandson and I.
Where can I go? What should I do? Please, The Band, help me. I feel so alone. I’ve prayed to every god I can think of, and I still feel so lost.
There is no handbook for when you marry someone with mental illness.
