Forty-five years ago, I came into this world after the expected length of time with all 10 fingers and all 10 toes. New-baby plump, pink, and hollering out my displeasure at being squeezed out of my warm, comfy spot. I was the fourth child in my family; the first two girls were fine, the third did not survive past his premature birth.
The fifth, my brother, arrived some three and a half years after I did, hale and hearty.
I was born broken.
Only no one could see it: it was on the inside. Within hours it became apparent something was wrong. I was not keeping formula down, I couldn’t tolerate my mother’s breast milk, formula, formula substitutes of any kind. I did not have a single bowel movement.
Tests were run, x-rays were taken.
Turns out I had the congenital defect, “Hirschsprung’s Disease.” A major part of my intestine, to put it simply, did not have nerves and therefore didn’t work.
When I was two weeks old I had my first surgery. Between a third and a half of my large intestine was removed and a colostomy was performed. There are a multitude of photos of me with both a diaper applied the standard way and one wrapped around my tummy over the colostomy opening. My mother became very adept at doing massive amounts of laundry. This is before the era of disposable diapers.
Over the course of the next several months, I had multiple abdominal surgeries.
At the ripe old age of 7 months, it was time to put me “back together.” They operated on me once again and did a re-anastomosis. A re-anastomosis is a surgery that re-connects the remaining colon to the portion of the colon near the rectum. A re-anastomosis was performed so that the colostomy can be closed and I could begin to have regular bowel movements.
My first memory is from when I was seven months old. I have shared this memory with my mother, with whom I haven’t really talked much about things other than the above. I remember lying in a crib, my legs spread and ankles tied to the crib bars, and my wrists tied as well. I remember laying there just looking at my mother through the bars of the crib.
Not upset, not crying, just looking at her.
She’s told me that this exact moment did, in fact, take place. That I was calm and accepting of whatever happened. She explained that I had to be kept perfectly still after the re-anastomosis surgery because, back then, they had to apply clamps to the “seam” where the intestine was put back together. These clamps were inserted through the anus and could NOT be removed or dislodged or the seam would come apart. The clamps would fall off when the seam was sufficiently sealed and the tissue was not as swollen anymore.
Thankfully, this is no longer a necessary part of re-anastomosis surgery.
For a few years after this, I would continue to have follow up surgeries for scar repair, another infection and incisional hernia. And it took years – well into elementary school (which is another story) – for me to learn how to control my bowels.
I don’t know what it’s like to not have a roadmap of scars on my belly. For one surgery they even opened me from the back, putting the incision in the crack of my bum. This is just my reality.
I’ve had additional surgeries, mostly related to the massive amount of scar tissue from my surgeries as I was an infant. I ended up having a complete hysterectomy (I was only 24 years old – I’m honestly still dealing with that loss).
But I’m alive. My parents told me the doctors said it’d be a miracle if I lived past 10 years of age. They didn’t tell me this until after I was well past 10 years old… and now I’m 45. I guess it all worked.
To top it all off, I was born in southern New Mexico to a dirt farmer and his wife in the 60’s. Imagine the empty rattling when one shook the coffers. My family reached out to the March of Dimes, and they were wonderful to us. There wasn’t a children’s hospital in southern New Mexico so all these surgeries and medical care took place at the nearest one – in Denver, CO! The March of Dimes covered many costs for my mother and I to fly back and forth, the costs at the hospital and the surgeries.
Thankfully, my level of Hirschsprung’s was a fairly mild one. I was lucky. Most babies with this disease have much more severe issues and more extensive damage/surgical needs.
Some babies with Hirschsprung’s even face mortality at birth or soon after.
I’m still broken in other ways, but in this, I am a survivor.
Fourteen and a half years ago, our lives changed forever.
We had already suspected that something was not quite right with Anna. She had stopped nursing after a few days. I assumed that it was my fault, and since I was afraid that she was hungry, switched to formula and bottle feeding. She did well with that for a few days, but then it seemed like a challenge just to get her to drink an ounce. We called the nurses on the maternity floor where she was born and were reassured that she probably just had gas and an upset stomach because of the switch and not to worry.
I was still worried, but we had our first postnatal pediatrician appointment the next day (July 25), so I knew we would get answers then.
In the meantime, I received a phone call from someone from the state of Michigan. I’m not sure – my memories of that are vague. I remember that she told me that Anna had potentially tested positive for one of the disorders in the newborn screening test, and we should go to the hospital to get blood drawn to confirm it.
I was concerned, but still focused on our doctor’s visit.
When we went to see Dr. Simms, her pediatrician at the time, as soon as we were called back to the exam room, she greeted me, looked Anna over, then excused herself to get one of the other doctors.
I guess she wasn’t sure how I would react to what she would tell me next.
When they returned, she explained that Anna had tested positive for maple syrup urine disease (MSUD), it was very serious, and she was very sick. T
he only specialist in the state who saw patients was located at University of Michigan: we were expected down there and we needed to leave as soon as possible. I remember that her southern accent was soothing and the other doctor gently held my shoulders and guided me to a chair, but my mind was in a fog. I didn’t understand… Anna was born healthy. Both of her Apgar scores were 9. That meant we were supposed to live happily ever after.
Right?
Right???
At the time, Lance was working at Hafer Hardware, and it was lunch time. Dr. Simms allowed me to use the phone in her office to call him. I called the store, but he had just left for lunch. And of course, this was before we had cell phones. I’m sure it was only a few minutes before he finally called back, but it seemed like an eternity.
After reaching him, Anna and I headed home to pack before we headed to Ann Arbor.
On the drive to U of M I poured over my “What to Expect” book. MSUD wasn’t in there. I had heard of it, but only as an ailment of a serial killer in a crime novel I had read, not as a real disease.
When we got to the ER at U of M, Dr. Allen, a neurologist who treated patients with MSUD, and a gaggle of med students crowded into the small room. I remember that he removed Anna’s diaper and passed it around for the students to smell. He then took a swab of her earwax for them to smell. We were completely flabbergasted… what did he think he was doing?
We didn’t realize he was doing it to show the students that both smelled like they had been smothered in Aunt Jemima’s.
You see, there were signs that Anna had MSUD, but we never picked up on them.
She had a very high-pitched, shrill cry, but we joked that she’d sing opera someday. By the time she was 3 days old, she tensed her muscles so tightly she rolled herself over. We bragged that we had a wonder baby who was months ahead developmentally. Her diaper smelled sweet and syrupy.
We chalked it up to being new parents, and being so in love we thought her dirty diapers smelled good.And what we thought was fussiness with the bottle and me not being confident in nursing was actually because her brain had swelled so much that she lost the suck and swallow reflex.
By the time we were in PICU, she had an IV in her scalp because she was so dehydrated that it was the only blood vessel they could use. She had an NG tube giving her nutrition. She was hooked up to heart monitors and pulse-ox monitors. She looked so tiny and helpless there in the bed. We’d never felt so helpless as parents as we did then.
That day is one of the few times I’ve seen my husband break down and sob.
What information we were given about MSUD over the past few days was overwhelming. Most of the official definitions included two very frightening likely outcomes: mental retardation and death.
The prospect of having a child with a restricted low-protein diet was daunting as well. Would we need to become vegetarians, too? If we wanted to eat meat, would we need to hide it from her, making late night drive-thru runs to satisfy our cravings? Those fears seem so trivial now, but they were so real to us then.
Over the next two weeks, Anna got stronger.
After she got out of the PICU, she was moved to a regular room. After she regained some weight and was able to take feedings by bottle, we were able to come home.
She was sent home with the NG tube, as she was still taking about a quarter of her formula that way. Shortly after we got home from the hospital, she grabbed the NG tube and pulled it out, flinging stomach acid all over me. I should have known then that it would serve as foreshadowing for how the next thirteen years would go!
Thankfully, we were able to remove the tube after a week.
As I think back to those days, I also look ahead to what faces us.
When it comes time for her liver transplant, I know that we will face long days in the hospital full of tears, hope, fear, and prayers. The big difference will be that this time, we will be filled with hope.
Hope that although we will be entering a new chapter full of uncertainty, we will be free of the fear that MSUD has caused over the past 14 years.
Addiction isn’t called a “family disease for nothing.” The family of an addict is just as impacted as the addict.
This is her story of her son’s addiction:
My child has become an addict and loving my child is so very hard. I’m trying to find my happy as I learn to deal with his addiction.
With the overload of health issues around here, along with the common “life stuff,” I willing took a break from blogging after the last attacks from trolls; trolls who don’t know me, know my child, know my life, know my situation, and will never understand my life or my thoughts.
Simply: I took a break because I wasn’t strong enough to keep going,
Three blogs, five days a week, and two little freelance writing gigs with groups have kept me tied to the computer dumping out my odd take on humor, insane fake advice, and occasional a vaguely serious topic.
I have decided I will blog, on my blog, and the trolls will not, cannot affect me. I won’t allow them that kind of power. I have to share this story because as odd or awful as this is, I can’t believe I am the only one. Sometimes knowing you aren’t alone, can make a differences on your life. It has in mine, just like everyone here at Band Back Together.
I call it “living” but it’s really just existing – when I can muster the strength to push the elephant in the room to the back of my mind. This horrible addiction elephant.
When someone you love makes horrible choices, you can still love your addict child, but you also have to make a choice.
I made a choice to love from a distance to allow my son to deal with his addiction on his own time, allow that person to do things at their will, wherever they wanted. The condition was: I would not support that person, their activities: not emotionally and definitely not financially.
Of course that comes with a higher emotional consequence for me, a soul-eating, mind -boggling, hellish existence.
Torn when the phone doesn’t ring, furious, emotional and torn when it does. There is no happy medium, is no mutual enjoyment of life, it’s an inner ring of hell.
It’s odd how the human brain learns to process things so completely outrageous and unacceptable if they happen often enough; the brain removes logic to save the heart. The brain knows if one more little piece of your soul falls to the floor, you will collapse and finally fade away.
Things you never thought you would hear, become expected. Disappointing? Of course. Scary? Almost every time. Seeing red with anger? A lot. Somehow, your brain allows it to roll off your back.
loving an addict through childhood
You can’t fix it, they don’t want to be fixed, no matter how absolutely insane and ludicrous the situation, you cannot even point out how completely illogical the situation is, let alone offer solutions. There are no less than 683 million reasons why all of your ideas are completely stupid.
You learn to focus not on the highs, not on the lows. Not the shocking news, but only that you love that person, your child, who just happens to be an addict.
You make sure whatever you say won’t offend them, or their choices, and you make double damn sure that person knows you love them, you love them deeply, you love them completely, you love them from your soul. You only want the best for them, safety for them, happiness for them.
No one really has the same idea of happiness.
it took me 43 years to realize that.
Another thing I learned; just because it’s ” the normal” thing that you’d make anyone happy, happy and delighted and feeling so very lucky, this can seem like hell on earth to someone with a different view of happy. So who am I to attempt to enforce my idea of happy on anyone? Simply put, I am no one. I am just a daughter, a wife, a sister, a mother, an aunt, a friend.
I am made up as we all our of a unique cocktail of our childhoods, our teachers, our elders, our peers, our life lessons, co-workers, books, and shows we have seen. Just a big casserole of a human being trying to find “happy.” When I achieved happiness, I assumed it would be wonderful – more than wonderful – and that, in turn, everyone else would become happy. Everyone would see how hard work brings happy, how loving each other brings happy, how walking the right road, singing your own song, and smiling would obviously land you in happiness.
The past 20 years, I tried to shove people into the happy, I tried to drag them into happy, push them in, beg them, lure them, slide shows of happy, handmade cards, long emails, song dedications, heartfelt talks, and hugs, I could surely get them to happy. Once they saw happy they would be like “duh, I want to be happy too!”
I was wrong. Their happy was so different than mine so I had to accept they would not be in my happy with me. Maybe they were taking a different route, and we would meet up in happy. Maybe their happy just meant more pit stops, more experiences, different criteria, maybe their happy would never lead to the same location as my happy. What would I do then?
Their happy could be really good for them, so I will work on being happy for their happy.
Little crumbles of your heart fall as your soul tears.
In the end, all you really want is for them to be happy. You convince yourself not to be such as narrow-minded selfish ass who demands everyone’s happiness is within arms reach of your happiness. We are not all alike, and really, what a boring world that would be. Keep telling yourself this as it makes it easier to persevere your heart, mind, and soul. Besides, it makes them happy that you are happy for them. It’s painful but it’s good for them and for the relationship.
Then the call comes, not a happy call, you are prepared because you know when this disease spins ’round, the calls come in two forms and two forms ONLY.
One, the world’s best thing ever, everything is amazing.
The next call, though, could be in a week, a month, a day, or within several minutes: the world is ending, there is no hope, no escape.
There’s not a single thing you can do to make it better. So you listen, try not to cry, remembering to love, offer helpful solutions, offer to make arrangements or calls, you do what you can and it’s usually for nothing. It rarely works out, but you make damn sure they know you love them so much you can’t breathe when they are in pain.
The calls – you see the caller ID – it’s a number from a state that you don’t know, but you do know who is on the other end, you never know the type of call, only that it’s from them. So you take deep breaths and you prepare to play the roulette game of their life. What kind of call you don’t know it could be: an incredibly fantastic words of grandeur.
Or the call can be gut-wrenching, heart-breaking, sobbing pleads for help.
You don’t know, because you can’t know but you answer the phone, inviting the roller-coaster of love and hate and pain into your world.
Nothing surprises you now.
As long as it’s their voice on the end, you are prepared, it’s now become common practice. You’ve learned to stop yelling, begging, urging, and learned to focus on conveying the fact that you love the elephant in the room. You love that elephant when your eyes open in the morning, and you love that elephant when your eyes close at night without a tear running down your cheek. No one sees your tear.
No one hears your cry and no one, no one can understand why this elephant is needed, deeply; it has become comforting.
Then as you are in your happiness on the back porch wind blowing you sit with your little family, cross-legged looking at your happiness, eating sandwiches, and thinking how peaceful and loving and happy this all is.
The phone rings.
The addiction elephant steps outside. The elephant sits on your chest, takes your breath, and overcomes you. Sometimes, when that elephant climbs on you, you compartmentalize you soul, your heart, and your brain as this allows you to attempt to speak in a sane, calm, tone, using gentle words, no blame, just love.
The call ends, with mutual ” I love you’s.”
The happiness is now gone for them as they are faced with a very adult matter that can’t be “worked away.”
You don’t remember the rest of the happy picnic: the people in your happiness with you do not have a conversation about it. You move on as you do after every call. But something is wrong, very wrong
You can’t tell anyone, yet you don’t cry, you don’t sob, you don’t fall to the floor, you don’t steal a car to get to the addiction elephant to hold them.
What the hell is wrong with you?
Why are you not responding like a human?
Why aren’t you happy?
Why not like the other times?
You haven’t fallen apart yet.
Will you fall apart?
Will this change your ability to move forward?
You know that If this person comes back, can you handle it?
Can the happy team handle it? What will be the cost of the elephant if you don’t?
What will be the cost of happy if you do?
I know the other shoe will fall, there’s just no way to process this without dying more inside. Maybe I am out of a soul, a heart, tears. Maybe I have been cried out, maybe I am stronger, maybe my brain is trying to protect me.
I am very much not okay, mostly because I feel okay, there is no way that I should feel okay.
Why am I not shaking, sitting in the shower crying, sobbing, and vomiting like I’ve done before when the bad news comes?
I’m not even shaking.
The shoe will drop, I hope, I beg, I have the strength, the knowledge, the wisdom, the compassion, the ability, the life experience, balanced with the brain, the heart and soul, to take this journey.
To share my happy, to understand their happy, to make a new happy, but most of all, to convey they undying, deepest of love and the basic humanity to make their happy the best happy I can.
Please find your happy; let everyone you know how much you love them – no matter what what makes them happy.
Me: Sam, would you like to have beef stew for dinner again, like Daddy and me?
Sam: Yeah.
Me: Great. Dinner is in ten minutes.
I am pleased that Sam says yes. I am pleased that he tried the stew at dinner last night. Trying new foods is a sign of health in our son, while rejecting foods is a clue that he is doing poorly.
We sit down to dinner. Sam looks at the bowl of stew in front of him.
Sam: I won’t eat this.
Me: Why?
Sam: I didn’t ask for it.
I’d sorted all the vegetables in the pot and put the best-looking ones in Sam’s bowl, because he won’t eat them if they are mushy or misshapen. Ian, Ruby, and I can live with less-pretty vegetables.
Me: Yes, you did.
Sam: No, I didn’t!
I’d poured Sam’s serving of broth out of the steaming pot five minutes before dinner so that it would be just the right temperature for him. I’d taken out four chunks of meat, cut them each into smaller pieces so their size didn’t freak him out, and then tasted a small piece from every chunk to make sure that none of them had that gamey flavor that stew meat sometimes gets, which would also freak him out and end dinner with tears. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
I close my eyes and take a breath.
Me: I would like you to eat your stew.
Feeding Sam is a delicate experiment, not only because a particular meal might fail if something is not right, but because a single bite of something he finds unpleasant will eliminate that food in his diet. It happened with a spicy bite of chicken when he was five, and now, two years later, he gags at the sight of chicken.
Sam, his voice rising: You didn’t ask me if I wanted this.
Me, my voice rising: I did ask you, Sam. Daddy and Ruby heard me ask you if you wanted stew.
Feeding Sam’s four-year-old sister Ruby is easy. She likes most of what we put in front of her and is eager to try new foods. As I argue with Sam about his dinner, Ruby quietly gets to work on her bowl of stew, the bowl of stew which I did not check over, taste or otherwise de-fuse before serving to her.
Sam, whining: I want to eat noodles.
Me, stony: You can have noodles if you eat your stew.
Sam stares hard at me, then lifts his spoon to his mouth. His small pink tongue darts out to lick the spoon, then disappears. He squinches up his face and says: The broth tastes bad to me.
The words pour out of my mouth hot and mean: You liked it yesterday.
Sam starts to cry. He beats the table with his fists. Ian warns Sam not to let his volcano explode. The developmental pediatrician had given us this metaphor for Sam’s angry meltdowns. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
Sam yells tearfully that it isn’t fair, that he didn’t ask for the stew, that it tastes bad to him. Ian gives him a second warning. Something shuts down inside of me, as though my anger abruptly recedes, and I gaze toward the stewpot, thinking placidly about throwing my bowl of stew against the purple tile backsplash behind the stove. About how the stew would splatter, how the shards of the blue Heath bowl would fly. Sam lets out a howl and my anger floods back into the foreground. I excuse myself and go to the living room.
I sit on the couch, sadness and fatigue eating at the edges of my anger. Most days, Sam’s issues threaten to overwhelm me. Now seven, he has had a sleep disorder since birth, and gets up for the day, every day, hyperactive, between 4 and 5 am. He is anxious, depressed, irritable, hypersensitive and over-reactive, and has been all of these things — in some way or another —his whole life. We recently found out that he also has celiac disease and cannot eat the gluten in wheat, barley or rye, and so now is on a strict gluten-free diet.
This is the son we have, the person we have to work with every day. Most of the time we do not feel equipped to do this, do not feel confident in handling what comes our way from minute to minute. I am, however, a competent researcher, and so I seek answers. This is one thing I can do.
Instead of working at my actual job, I’d spent my morning emailing with doctors at Stanford University, the University of California at San Francisco and the University of California at Davis, trying to find a physician who understands the relationship between Sam’s anxiety, depression and morning insomnia. We have seen psychologists, psychiatrists, a developmental pediatrician, a holistic pediatrician, a sleep disorders clinic, an occupational therapist, an osteopath, a chiropractor, and a speech therapist — the latter for the oral-motor disorder he developed because parts of his mouth were so sensitive he could not let his tongue go there. No one, except for the speech therapist —who assured us that correcting Sam’s speech should only take three or four years of twice-weekly therapy — has an answer for us, for our child.
When Sam was four, he picked obsessively at his head until it bled, and chewed his fingernails to nubs. When he gnawed off an entire toenail, we took him to a psychologist for help with the anxiety that drove him to tear off parts of himself. The psychiatrist heard his story and said that Sam didn’t need therapy: he had sensory processing disorder, difficulty taking in and figuring out what to do with everyday sensory information: sound, sight, taste, smell, touch, awareness of his body in space. That explained why Sam gagged at certain smells, could not dress himself, had fine and gross motor delays. Why, as an infant, he had cried at loud noises, at sunlight, at the feel of wind on his face. But why?
We are cautious in the way I imagine an abused wife is around her husband when he’s been drinking, certain he will explode, wondering only when. No one could tell us this. I’ve asked them all.
One psychiatrist told me, when I asked him why: We must have a certain epistemological modesty about what it is possible to know. In other words, suck it up and live with it. But I can’t— I need to know why my son is this way, so that I can help him live a less disordered life. I can’t see where modesty about my quest to help my child serves any purpose. Except, perhaps, that it might preserve my own sanity.
I feel so often that I am failing with him. Trying so hard and still failing.
At home we do what the occupational therapist calls a sensory diet to manage his sensory integration dysfunction, and what the developmental pediatrician calls cognitive behavioral therapy to redirect anxiety and rage. We are trying to control his behavior, mood and sleep disorders with nutrition — he takes fourteen different vitamins and supplements twice a day, and sits in front of a 10,000 lux light box every evening. We have adopted strict timetables and firm boundaries and clear expectations because Sam thrives on structure. In these ways, we prevent as many meltdowns as we can.
Still, we are cautious in the way I imagine an abused wife is around her husband when he’s been drinking — certain he will explode, wondering only when.
Ruby finishes her dinner and comes in to see me on the couch. I lie down with her delicate body on top of me, her back to my front. Cuddling. Snugging, as she calls it. Loving. We giggle and I start to feel a little better. She is my love, my light. I feel fortunate to have her, my normal child, my sweet girl.
Me: I feel lucky to have you.
Ruby: I feel lucky to have you too, Mommy.
Sam comes in. I ask if I can talk to him. I send Ruby to the kitchen in search of a gluten-free pumpkin muffin (Omnivorous Ruby has more-or-less happily gone gluten-free because of Sam’s illness). I tell Sam that I feel sad because I’d asked him if he wanted stew for dinner, and I gave him the best vegetables, and I cut up the meat and tasted each piece to make sure it was okay for him, and he still wouldn’t eat it.
His face crumples.
He starts to cry.
I pull him onto my lap and lie back down, hold him on my body the way I’d held Ruby. He is larger and more full of sharp elbows and wiggle. He starts to sob. I stroke his arms.
Sam digs an elbow into my ribs and wails: I hate you, you never do the right thing, I wish you weren’t my mother.
My hands freeze and my heart locks up. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
I take a deep breath and try something I learned in parenting class. As he howls on top of me, I say, with as much gentleness as I can muster: It sounds like you had a hard time with dinner tonight.
He doesn’t hear me through his sobbing.
I sit up and move his body off mine, position him next to me and look directly into his eyes. Say again, slower: It sounds like you had a hard time with dinner tonight.
He takes a ragged breath and sighs in two parts. Says: Yeah. Dinner was hard for me.
My heart melts a little.
Lock, melt. Lock, melt. This is the tachycardic dance in my chest every day I live with Sam. Sometimes it feels like I just can’t take it anymore, can’t handle the overreactions, the accusations, the sobbing, the vast despair. I don’t sleep enough to withstand it. I ask why he is crying. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
Sam: Because I feel so bad.
Me: What do you feel so bad about?
Sam: Because you did all that work for me and I didn’t eat it.
I melt the rest of the way. His despair becomes something to feel compassion for, not something hateful, hateworthy. Sam starts sobbing in that way that is not easy to stop. I put my arms around him.
There are things we could, should have done differently with Sam. We should have gotten help with sleep earlier. We should have figured out his sensory issues when he was a baby, not a four-year-old. We should have found a more aggressive pediatrician who helped with referrals and diagnoses. We should have taken special parenting classes sooner.
And there are still questions. Should we medicate him? With what, when his doctors can’t agree on what is wrong? Could we have found his celiac disease earlier? Are we, as our pediatrician once suggested, making too much of this? But here we are, on this couch, in this moment, and we have not done these things or answered those questions, and I have to decide how to respond to the howling boy next to me. My boy.
I murmur: It’s OK. I love you. I even loved you when I felt sad about the stew. I will always love you. I’m not mad. It’s okay. It’s okay. It’s okay.
His sobs start again. I hold him.
Me: It’s OK. Everything is going to be OK.
He cannot stop crying.
Ian comes in and says it is time for Sam’s supplements. That Sam already has two warnings. That it’s not OK to let his volcano explode like this.
Me: No, this is different.
Ian stares at Sam for a moment, taking in the ragged breathing, the small face wet with tears and snot. Then he says to me: Earlier when Sam was upset we did some squeezies, and Sam felt better.
Squeezies are the sometimes-ineffective and sometimes-magical joint compressions that the occupational therapist taught us to do on Sam. They are helpful during a meltdown when words don’t work. I often forget to try them.
I sit him in my lap and squeeze him firmly: shoulders, upper arms, elbows, forearms, wrists, hands, each joint of every finger. Press the flat of my hand into his stomach, compress his ribs from the sides, gently press his head down into his neck.
He begins to calm down. Still taking uneven, gulping breaths.
Me: We will get help for you. For this bad feeling inside. We are working on it.
Sam: Okay, Mom.
I squeeze his smallest, last finger. He catches sight of a toy catalog on the floor and asks to look at it, sitting up next to me on the couch. He takes a shuddery breath. Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam, opening the catalog: Is that a bouncy house?
Then, with more enthusiasm: Is that a pirate sandbox?
He smiles.
We look through the catalog together, and then I tell him it is time to go take his supplements. He does not argue. He looks at me.
Sam: I wish you could do my bedtime reading tonight, Mom. Daddy was giving me warnings. He thought my volcano was exploding.
Me, thinking for once it is Ian and not me who has missed a cue: It wasn’t your volcano, Sam. This is something else.
Sam: Daddy thought it was the same thing.
Me: Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam: Okay, Mommy.
Sam goes into the kitchen. I sit on the edge of the couch alone for a moment.
I take a deep breath, and then go back into the kitchen to find my family.
Since 2003, the March of Dimes has led Prematurity Awareness Month activities in November as part of its Prematurity Campaign.
The goals of the campaign are to reduce rates of premature birth in the United States and raise awareness of this very serious problem.
Please, we encourage you to to submit your own stories of prematurity with The Band.
Four years ago I would not have paid attention to an event like Prematurity Awareness Month and I likely would not have even known about the work of the March of Dimes. Today I am proud to be a supporter of the March of Dimes and their important work.
On March 8, 2007, my niece, Lucy Clare entered this world after my brother, Jonathan and sister-in-law, Mary, made the difficult decision to have an emergency c-section at 25 weeks gestation. In the weeks leading up to Lucy’s arrival, Jonathan and Mary knew that there was a chance Lucy would have to arrive early. She wasn’t growing and the doctors said that if she didn’t reach 500 grams (1.1 pounds) there would be very little they could do.
We all held our breath as Mary went to each ultra-sound appointment, hoping that this baby (gender unknown to all but them) would grow – just a little bit more, just a few more grams. They were briefed by the ob-gyn on what outcomes to expect if she was born at 32, 30 or 28 weeks.
A few weeks prior to Lucy’s birth, they were given a tour of the NICU so that they would be prepared for what they may encounter. At their last appointment, on March 8, they were told they had to make the difficult decision – wait another week and risk that she wouldn’t survive in utero or deliver that day knowing that the hospital had never had a baby that small survive.
Wanting to just give Lucy a chance, they opted for the c-section.
Lucy was a micro-preemie in every sense of the word. She weighed only 400 grams (14 ounces) and was just 10 inches in length. At her lowest, she dropped down to 290 grams. She was given surfactant therapy – its research was funded by the March of Dimes – for her lungs.
She breathed with the help of a ventilator for five weeks before being switched to CPAP for two months and then on nasal cannula until she was discharged. Lucy’s time in the hospital was filled with ups and downs – it often seemed like one step forward and two steps back. She faced many of the challenges that preemies in the NICU face: infection, retinopathy, the struggle to breathe on her own, a heart condition and feeding challenges.
Lucy spent 182 days in the hospital – six long months – before she joined her family at home.
Today Lucy is a happy, funny, easy-going 3 ½ year old who adores her big sister Stella and is starting to enjoy her baby sister Mallory. She loves books, colouring, watching Yo Gabba Gabba and dancing. But she still faces many challenges: she takes medication for pulmonary hypertension, she relies on a feeding tube for 100% of her nutrition and she has deteriorating eyesight. She has therapy appointments with a feeding specialist, physiotherapist, and attends weekly sensory motor sessions.
The work that the March of Dimes does through education, Prematurity Awareness Month, March for Babies and so much more, is crucial to helping all babies have a healthy start. Our family considers itself lucky that Lucy is here today and we want to do everything we can do to raise awareness for prematurity-related issues. It’s our chance to give back just a little bit.
A wise woman told me to write up my story and tell the hell out of it. So, here I am.
Sometimes, I feel like I have the only kid like mine. My son was diagnosed between 3 and 4. He is one of 3 I have, with special needs. For the time being, I’m focusing on my oldest.
We knew something was not right with him. He threw an 80 lb. mattress across the room at me. How does a 3 year old do that? He never slept. He would have meltdowns and throw things at me. I have gotten black eyes from everything from a book to an army boot to the back of the head.
Thankfully, I had a wonderful doctor tell me how to deal with the meltdowns and those came less and less often. However, he would wander. We had two incredibly scary events where he wandered off when he was 5, but he had angels and off duty police officers watching out for him.
When we got the Autism diagnosis, I knew nothing about Autism. Most people equate it to the movie Rain Man. I had never seen the movie so I had no clue. All I knew was Doug Flutie, an NFL football player, had a cereal that’s proceeds went to autism awareness. The only reason I knew that is because I saw the commercial once while my husband was watching a game. That’s all I knew. Nothing else.
So, the journey was rocky and hard. The first year my husband was stationed in Korea, so he was not around to learn what I did.
I relied on “friends” I thought that I had to help. Instead, I got investigated by CPS (child protective services) for making everything up. The only thing that was founded was that I was stressed. (Gee no idea why???)
My son’s first year in school was horrible. Open classroom and he would have meltdowns. They did not want to deal with him, so 5 out of 5 days he went to school, he was sent home early. I had no idea what I was supposed to be doing or how the school should have been handling him.
Thankfully, the school he was moved to had a wonderful Spec Ed teacher that knew what she was doing, to this day, I will still kiss the ground that she walks on.
He improved and stayed in school. Had messy moods and lack of sleeping so we had to join the medicine bus. So many doctors and specialists, “you should do this” and “don’t do that and this and that.”
The kid is a loving, sweet amazing kid. He has a hard time showing that. He has many co-morbidities along with his autism. ADHD, ODD, Anxiety, depression, hypermobility, OCD, etc.
In our journey with him, we realized he wasn’t like most kids with autism. So many can use an iPad and it’s nothing. A phone and no problem. With my son, he can not tell the difference between reality and what’s on the iPad or phone. We tried. We tried so many times, so he could be like his friends or brothers. But it ultimately turned out so, so, so, so bad.
When he was 11 a child that bullied him at school told him that triple x rated stuff on the internet was bad and if you looked at it you were super special because not everyone’s computer can look at it. Ever since that day, my son has been fixated on it. At 11 he had no idea what it was, just that it was special and not everyone could see it. As he grew into puberty it got worse and worse. I still don’t think he knows exactly what its supposed to mean to a person, because his thinking age is around 10, but he knows its bad, he’s told his therapist it’s bad. He’s tried to look at it on the internet at school.
We had everything on our cable blocked so that he could not watch it or order it and somehow he got around it and we had a $900 bill. (I’m still drinking coffee to cope with that one)
Now he’s in a dark, dark place. He’s obsessed with death. He writes and writes and writes about death scenes. Then he tears them up. He talked to his therapist, but he sees no problem. We can not even let this child watch cop TV shows it’s that bad. Nothing to do with magic, or death.
My husband and I have been watching his behavior as of the last 2-3 months and I’m not liking what I see. Neither does my husband.
His moods are very erratic. One minute he’s happy, the next he’s angry and ready to fight. Then he’s happy. (Note: he has not touched a soul, just has gotten angry with words) These mood changes make me think he’s bipolar. We were warned that he probably was a few years ago. We knew it was coming.
Now we’re questioning the doctor, because my husband and I are so completely and mentally drained from dealing with his moods and trying to keep his brothers from upsetting him. The doctor is trying to tell us that he’s making it all up and that we just have to deal with it. My first thought, no lie, was, “The fuck you mean deal with it? I’ve BEEN living with it! We came to you for help on how to KEEP dealing with it, asshole!” I, of course, did not say that, because I was too tired.
This kid has been in-patient 7, lost count after that, times for being bullied and being suicidal. I’m scared to death something is going to set him off. Granted all sharp instruments are kept under lock and key. We continue to try and understand what is going on, but our son can not tell us because he does not remember the mood swings.
His doctor said, because he does not feel bad for being angry and mean, he is not bipolar. DUDE, he’s autistic, he’s not going to feel bad.
I had 2 major surgeries and he bumped what I had surgery on, I started crying and he didn’t give two craps. That does not mean he’s not bipolar!
It’s hard to keep him busy. He gets bored with puzzles and crosswords and TV, because we have seriously toned down everything that he can watch. I’m just at a loss on where I should go from here. There’s probably a lot I left out of his story, I’m sorry for that.
Here’s another twist on his story. He legit thinks he’s from another dimension. He thinks he is a female from another dimension, that he will leave to find when he is 18 years old. There are artifacts all over the world that he has to collect in order to remain safe in this other dimension. He thinks that the here and now is just temporary. Because of his beliefs with this, he can not watch or read anything that involves fantasy. Because he can not and will not be able to tell the difference between what is real and what is not.
His therapist and I had a long talk today about it. I had to stop from bursting into tears, because I have never heard of another child like mine. I explained that to him and asked what do I do. He said I do what I’m doing… Be mom.
It did not help when he said that in the 13 years that he had been doing what he does, he had never met another kid like my son.
Sometimes, being a mom is rough as hell when it feels like no matter what you do, it’s out of control. You know all those books you read before you have kids? I never read any chapters on Autism or special needs and I sure as hell never read any on how to deal with this kind of life for your child.
I guess I should add that I am dealing with my own depression and anxiety right now. My anxiety is off the charts and my shrink threw me into counseling. Didn’t even ask just threw me in. I also have a chronic illness and it flares up in the form of pain when I’m extremely stressed out, the last 3 months I’ve gotten little relief.
It’s sad to say at this point, I’ll deal with me as it comes. I just want my son to be okay. I know I need to worry about me, too. If he is okay, then I can be okay.
Basically, I’m writing this because I just need to know I’m not alone. I’m so tired. My gut instinct with this kid is never wrong. My gut says he needs help with this anger thing and his doctor is being stupid.
