The old me died in a puddle of tears on that birthing table as my daughter whisked freshly from my body was clucked over and examined and I was left paralyzed from the waist down, terrified and alone. I was reborn into a new world where all of my old besties and allies were no longer at my side, where my husband was gone, and where I was, again, alone against the world.
It’s not terribly different, I guess, than how any of us are born, it’s just that I was older and not covered with that cheese-type stuff.
For eighteen months now, I’ve carefully picked up the pieces of who I was and assembled them back into a reasonable representation of who I am now. I discarded some of the old things I didn’t need: the anger that I’d held onto for so long and the inability to let people in and the long-held opinion that I didn’t need anyone but myself to be happy.
In turn, I’ve added some new things that I think I always needed but didn’t realize: I’m warmer, more loving and I’m more thankful of the people who do love me. There are bad things woven in there too, of course. You don’t go through major traumas without picking up some hell along the way. The darkness inside me is heavy sometimes. Sometimes I wonder if it’s more than I can bear.
These shards of who I am now are stitched loosely together with the belief that the universe is far less random than I’d ever thought it was and that someday, it’ll all make more sense. I have to cling to that idea or I’d probably go crazy and shave my head and tattoo a fire-breathing scorpion on it.
Monday morning, I will go back to the place that I was born. Not Highland Park Hospital, where on July 15, 1980, Rebecca Elizabeth Sherrick* was born, but Central DuPage Hospital, where Becky Sherrick Harks was born on January 28, 2009. I haven’t been back since her surgery.
My daughter, her curls like a halo, finally masking the scar that bisects the back of her whole head, she and I will march into the place where we were both born on the very same day. My ghosts will roam the halls with us, carefully holding my hand, gently guiding me find the place where I will take my daughter to help her find her words.
I hope that when I pass the ghost of myself in the hall I can send her a hug; some silent signal of strength from her future self. Because while the darkness is omnipresent, the sadness an integral part, there is always hope. I hope that she knows that the future is large and that while she will rage, trying to fit in to a world that no longer exists, in all that she has lost, there will be more that she gains.
Monday, the flowers in the vase on the desk will be fresh, and the volunteers will smile, confused by the visibly upset young woman and her beautiful daughter. They will not understand that sometimes, it just hurts.
They will not understand that sometimes, you slay the dragon.
Sometimes the dragon slays you.
Today, Amelia, Princess of the Bells**, she and I will slay my dragon.
————–
*what? You didn’t think my parents named me Aunt Becky, did you?
**Amelia, by my amazing friend the Star Crossed Writer
An army stands ten thousand strong and tall,
But you shall rise above the bloody fray
And rain down vengeance ‘pon your enemies
And all those who would stand against your will.
When darkness threatens fainter hearts than yours
And calls ring out for champions to arise,
The cries will cease and everyone will see
Amelia, the Princess of the Bells.
I just spent two hours trying to explain to my middle child, who is 3 1/2 (and I suspect autistic), that the puzzle she insisted I get down for her did.not.exist, that hitting her sister was unacceptable, and that she needed to be quiet because other people were trying to sleep.
I spent 30 minutes in the closet, pointing to each puzzle we did have and asking, “This one? No? This one?” over and over again. We only own three puzzles, if that gives you any idea of the sheer frustration I experienced. She kept pointing and saying in her fuzzy Bitsy speech, “There! Up there! Pongo!” Pongo, for those who do not know or readily remember, is the father dog in 101 Dalmatians. We own both the original and the sequel, Patch’s London Adventure, but she did not want a movie. That much was clear as day, because every time I showed her the movie case, she screamed and shook her head no. Ooooo-kay, back to the puzzle-pointing-is-it-this-one? game.
Every time I didn’t find what she thought should be there, she got a little louder, a little more shrill.
After thirty minutes had gone by, I was sick of trying to convince her it wasn’t there, and I left, apologizing that I couldn’t find it but that we really don’t have it. I swear. This set her OFF.
She started hitting her sister in her frustration — this is a common problem with her — and we spent the next twenty minutes on a merry-go-round of, “Say sorry to Punky.” “NO!” “Bitsy, we do not hit. Say sorry.” “NO!” “Do you need to sit in time-out?” “NO!” “Then say sorry to Punky.” “NO!” “I’m counting to 5–” “NO!” “–and if I get to 5–” “NO!” “–I’ll have to put you in time-out.” “NO!” “1″ “NO!” “2″ “NO!” “3″ “NOOOOOOOOO!” “4″ “NOOOOOOOOOOOOOOOOOOOO!” “5. Okay, I’m putting you in time-out now for hitting Punky and not saying sorry.” “NOOOOOOOOOOOOOOOOOOOO!” I sat her by the front door (designated time-out spot) and she started shrieking. Not just the typical “I’m upset” screaming most children use to bloody ear drums, but the kind that evokes images of murder and torture. I’m a teeny bit surprised that our neighbors didn’t call the cops or CPS or something. Ten minutes of this while I sat there like an asshole, reminding her to be quiet because people are trying to sleep, including her baby sister.
She refused to calm down. For an hour. And before you think she couldn’t possibly go on so long, I know for a fact that this child can scream and shriek and cry and whine for four hours solid — and that’s only MY record hold-out time. I’m convinced she would have gone on longer had I not given in. But that was almost a year ago, and her tantrums — if you can even imagine this — have gotten worse.
I try redirection, and sometimes that works… but sometimes it just doesn’t, no matter how hard I try. And there are times where I don’t believe redirection is appropriate. Sometimes there just have to be consequences. Like hitting, for example. I’m not going to use, “Would you like to color, Bitsy?” when she’s smacking her sister around. That’s like I’m rewarding her for hitting. If they’re fighting over a toy and I notice she’s getting worked up, yes, coloring works as a distraction. But her safety and the safety of my other children demands a direct correction.
But Bitsy doesn’t take direction well. She screams and hits and bites and throws things, going so far as to plug her own ears so she can scream harder and louder without hurting herself. It’s like she’s trying to drown us out because reality and her idea of reality aren’t meshing, and she can’t handle it. Literally cannot handle it. Not “chooses” not to handle it, not “doesn’t want” to handle it, cannot handle it.
How do you deal with that? I’ve yet to find a way. I can’t trail her all day every day to catch every little stress-trigger and divert her from it. It’s just not feasible — I don’t even think it would be feasible for a stay-at-home parent of an only child. There are things I have to do; clean the house, wash dishes and laundry, mend clothes… And I have two other children, one of whom is only nine months old.
And you might wonder, why would I have another child when she was so time- and attention-consuming? Because 17 months ago (baby was born at eight months, not nine), she wasn’t nearly so bad. Her behavior, while problematic at times, was not constantly this way. She had her bad days, certainly, but she had lots of good days, too. I don’t know whether it was bringing another child into the house or just her own natural progression that did this to her, but I did not intentionally put myself in this position. I had no way of knowing this would happen, but it did, and now I’m stuck in it. And it isn’t just her behavior that makes my days trying.
My beautiful little girl used to eat a wide variety of food; in fact, there was very little she wouldn’t eat. Pears, the peel on an apple, cabbage, horseradish, and sauerkraut. That was it; that was her list of dislikes two years ago, and she’d been exposed to a very wide variety of foods. But now I’m lucky if she eats anything but granola bars, bologna, and fruit snacks. I’ve seen so many healthy foods she loved fall out of her diet, like broccoli, chicken breast, corn, fish, nuts, fruit of all kinds… The only real fruit that has passed her lips in months is blueberries, and I stared in amazement as she ate those.
I don’t know what to do anymore. I have to wait until after the holidays to start the ball rolling on being evaluated, and even then it is a long process. I have very few ways to cope day-to-day. I have no family, no friends nearby who can help me out or give me a break once in a while. And even if I did… who would be able to deal with her? And all three? Forget it! Their father can barely handle them, and he’s their father. He’s good with kids — he has six little brothers! — and even he throws his hands in the air and says he doesn’t know what to do anymore. I can’t even count how many mini-breakdowns I’ve had over the past few months.
This is adapted from something I posted June 18, 2010: Autistic Pride Day. I’m bringing it over here because I’m thinking that if you or a loved one is newly diagnosed with Asperger Syndrome, you might not want to hear any more doom and gloom. You can find plenty of that in the many wonderful, helpful, but somewhat depressing textbooky tomes that are available at your local library. Asperger is challenging, yes. But it is also kind of awesome.
Autistic Pride Day. I know what you’re thinking: Didn’t I just see a bunch of copied-and-pasted status updates on Facebook about that a few months ago? Nope. That was World Autistic Awareness Day, which is April 2 every year. World Autistic Awareness Day is about letting you know that autism exists. Autistic Pride Day is about letting you, the neuro-typical person (or “NT” to us hipsters) know that autism can be kind of awesome.
There is a whole world of autistic pride and politics that I’m just learning about. (The most helpful piece of advice I can give you is that getting worked up about the politics of autism does not help the newly-diagnosed person one bit.) Autistic Pride Day is promoted by Aspies for Freedom, an organization that pushes not just for autism awareness, but awareness that autism has both advantages and disadvantages.
Let me just say this: I’m pretty sure the people at Aspies for Freedom are talking about people with fairly high-functioning Asperger’s Syndrome. If you’re the mom of a severely autistic child who’s still nonverbal at age 6 and never smiles at you, you’re probably ready to tell the nice people at Aspies for Freedom that neurodiversity can suck it.
Little Dude is more along the lines of the high-functioning Asperger’s. And I can certainly say there are distinct advantages and disadvantages to our situation.
In the spirit of Autistic Pride Day, here is my Top Ten List of Asperger Syndrome Advantages and Disadvantages.
Disadvantage #10 Little Dude eats the same thing, every day.
Advantage #10 Meal-planning is a snap.
Disadvantage #9 All Legos, all the time.
Advantage #9 May grow up to be the next Frank Lloyd Wright.
Disadvantage #8 Obsessive-compulsive behavior means we can’t leave the room unless the television and the power strip are turned off.
Advantage #8 Asperger’s Syndrome is the new “green.”
Disadvantage #7 Makes odd, surprising noises.
Advantage #7 Maybe other kids will think he’s beat-boxing.
Disadvantage #6 Despite having advanced vocabulary, Little Dude’s speech is sometimes very unclear.
Advantage #6 Woman behind me in check-out line doesn’t realize Little Dude is talking about testicles.
Disadvantage #5 Does not make eye contact with friendly pediatric nurse.
Advantage #5 Does not make eye contact with anyone at Walmart.
Disadvantage #4 “Motor-planning deficit” means he struggles to take off his own shoes.
Advantage #4 “Unusually intense, narrow area of interest” means he can beat adults at Wii Lego Star Wars.
Disadvantage #3 Talks incessantly about Legos, Star Wars, and Lego Star Wars.
Advantage #3 No longer talking about Dora.
Disadvantage #2 Sometimes says insensitive or inappropriate things.
Advantage #2 These things are hilarious.
Disadvantage #1Random muttonheads Concerned strangers ask me if I think he’ll be ready to potty-train sometime soon, why is he flapping his hands, and oh, you mean he’s like Rain Man?
It’s 1:30 in the morning, and we’re having the worst week since my daughter’s diagnosis of Type 1 Diabetes. Insane blood glucose numbers, ever-increasing insulin needs, ketone testing…and the endless blood sugar testing. My daughter is a pin cushion, and I hate myself each time I jam another needle into her skin, when she winces, but doesn’t say anything, when it hurts badly enough that she says “Ow, that one hurt,” it feels like razors cutting my heart to ribbons.
170 days since the diagnosis. 170 days since I leaned against the wall in the hallway outside the emergency room and allowed myself the luxury of five minutes of tears. 170 days since I called the ex-girlfriend and the midget’s father in the middle of the night and told them to get to the hospital NOW! 170 days since I watched them strap my daughter to a gurney and load her into an ambulance. 170 days since I heard the term “PICU” and realized that’s where my daughter was going. 170 days of trying to readjust to normal, and realize that nothing was ever going to be normal again.
170 means at least 700 finger pricks and 700 injections. And that’s assuming that every day we only test four times and give four injections. Which never, ever happens. When she runs high, I give insulin corrections, then check again to see if she’s come down. When she runs low, I give sugar, then recheck to make sure she’s gone back up. Not even six months in and she’s had 1500 holes poked into her body.
I’m sitting here at 1:30 in the morning waiting for it to be 2AM so that I can test her again, and then lay down and try to sleep, but I know that I will instead spend the rest of the night waking up every thirty minutes to make sure she hasn’t gone low in her sleep. If she does, she doesn’t wake up, which could mean…I can’t even bring myself to type the word, can’t bring myself to use it in conjunction with my beautiful, precious daughter…but it would be very bad.
On the other hand…when she runs high all night like she has all this week, I think about all that sugar in her blood, and the damage it’s doing to her body, knowing that it’s coating the blood vessels in her heart and her eyes and her kidneys, another layer of damage, bringing her that much closer irreparable harm. It sickens me, makes me physically ill, makes me want to scream and cry.
170 days of wishing that I could take her place for each finger stick and injection.
170 days of wishing I could take away her type I diabetes.
hen I showed up to the pediatric transplant unit for my first day of residency, it was mercifully dark and quiet, the nurses flitting purposefully about as stealthily as they could. The only sounds I could make out beyond the steady mechanical hum found on any hospital unit were the occasional IV beeping, signifying, perhaps, an occlusion in the line or that a bag of fluids was now emptied. It was quieter than any unit I’d ever been on before.
Reds and blues and bright yellows lined the hallway and I noted cheerful balloons painted on the walls as I thought to myself, how wonderfully non-clinical it all looked. How perfectly child-like. It seemed only fair that if a kid were sick enough to have to be in the hospital, at the very least, they could feel at home.
I spied a television with a DVD player and PlayStation stashed in a corner, and marveled at how this hospital really had been designed with children in mind. The unit fridge was stocked with puddings and chocolate milk and chips and graham crackers; all stuff my own two-year old would have happily eaten. I felt as though I might actually be in some sort of elaborate daycare facility rather than a major children’s hospital. There was even a McDonald’s in the basement.
It wasn’t until I got my first assignment -a baby; severe liver failure- and saw that my one-year old patient was the size of a three-month old that these children weren’t having much fun. These kids weren’t on vacation. They weren’t at daycare. They were sick as hell. Some were well on their way to dying.
And still, even as these children died, life went on outside.
People bustled by on the streets, knowing, perhaps, the name of the hospital and the types of patients, but never knowing that fear. The fear that lives in your gut once something horrible happens to you and you know how in the cosmic scheme of things, there is no “fair.” They’d never know how terrible it is to listen to children -innocent children- in pain. These people would never have to voluntarily inflict pain upon their own flesh, their own blood, because sometimes life deals you a wild card, and you do the best you can.
They’d never know about the secret places in the hospitals, the PICU’s; the NICU’s where small, but real lives routinely hung in the balance. Where cosmic scales made absolutely no sense. Where kids lived and where they died.
This secret place, the land of tears.
When they’d think of hospitals, they’d think of the places where old people went when they were ill. Where your appendix or a foot or two of colon would be removed and you’d go home. Cured. Where you’d splint your broken arm, x-ray a broken leg, and bandage up that nasty gash on your finger. Where old people died.
Hospitals weren’t places for children. Because in a fair and just world, kids wouldn’t get sick and kids wouldn’t die.
Kids wouldn’t be born without brains, or with only part of their brains, or born too early, too soon to live. Babies wouldn’t be born still. Kids wouldn’t need dialysis or organ transplants. No kid should have to know the torture of chemotherapy. No parent should have to send their kid to the morgue. No family should have to plan a funeral for a child.
Death, dying; transplants and cancer, those are things that should affect the old, the people who had loved and lost, married and had their families, kids, grandkids; people who had lived.
—————–
My universe is less random than I once thought it to be.
When I birthed my sick daughter, Amelia, it just so happened to be where the very same children’s hospital where I’d previously worked had just opened up a satellite unit. At three weeks of age, she underwent neurosurgery, and for the second time in her life, she became a patient there. First in the NICU, then the PICU.
The monitors blipped intermittently for my daughter, gown bearing the same logo I’d seen so many times before, when her heart rate dipped or she’d forget to breathe and watching them, I’d shake her tiny feet, whispering breathe, baby, breathe into her pink shell of an ear. And then she would inhale, those glorious oxygenating breaths filling her lungs as the monitors would once again blip normal vitals. The alarms would stop shrilly alarming and yet another crisis would wink at us in the rearview mirror as it passed.
Her father and I signed furtively in and out of the NICU, then PICU after we were buzzed in by some unseen, nameless, faceless person into a locked, secret unit; mere ghosts of ourselves. We’d drift in and out for the tenth or sixtieth cup of coffee to keep ourselves awake and functioning, getting gluey food from the cafeteria to put into our mouths and chew, never tasting it. Sometimes, our paths would converge with other shells of parents. We’d smile knowingly as we passed; the kinds of smiles you smile without any trace of joy. Those commiserative, “you too, eh? Well, FUCK,” smiles, not the, “hey, friend, how are you?” kinds.
We learned later that we were the lucky ones. The ones that were buzzed out of this unit with our daughter in her carseat, strapped tightly in and screaming her head off.
The unit of sadness, of broken dreams and tears. Laughter and heartache.
When you say things like this, I want you to remember a face.
This is my daughter. In this picture, she’s playing soccer. With a Special Olympics team.
You see, she was born with a metabolic disorder that caused brain damage when she was only a week old. She may never read over a third grade level. She still has a speech impairment despite 12 years of therapy. She’s socially inept at times.
Yeah, she’s what some people would call “a retard.”
Only that word is complete and utter bullshit.
Hearing that word cuts both her and me worse than any knife could. There is absolutely no reason to use that word. EVER. Don’t give me the bullshit that it’s a medical term. If you do, I’m liable to scream “shut the fuck up” in your face. Well, maybe not, but I will be screaming it in my head.
If you’re going to use the word retard, you might as well use words like nig****, fag****, dyke, cunt… Oh, but you won’t use those words. Those are bad words.
But retard? Well, that’s not so bad. After all, the only people that’s only insulting the mentally impaired. And they don’t know what is going on, do they?
I have news for you though. They do know what’s going on. Mentally impaired people have feelings, hopes, and dreams just like the rest of us. If you take a few minutes and actually get to know someone who is mentally impaired, you’ll discover that.
This isn’t about being politically correct. It’s about showing some RESPECT.
