Heart
It’s not too often I get serious on this blog, but the theme this week over at Mama Says Om is “Heart.” This story is 7 years overdue…..thanks ladies for your continued inspiration.
Dylan was born a healthy 8 pound, 11 ounces. He had a bit of a fever and so the hospital took precautions and placed him in the NICU for his first three days of life. I was 24 years old, and had a good sense of who I was, and was so very happy to be a mother and wife. This was all I’d ever wanted. Growing up, my mother carefully wrote in my big blue school years memory book, and every year, while the desire to grow up and be a nurse, doctor, artist, dancer, or lawyer kept changing, the word mother was always written first.
Dylan was what people call an ‘easy baby.’ He rarely cried, nursed like a champ, slept a normal amount of time, and I loved cuddling him in my arms and dancing in the living room, making him smile, and going for walks in our Vancouver neighbourhood, a few blocks to the coffee shop for a latte or to Baby Gap to peek through the clearance rack. Despite Dylan’s happiness, I was still quite a nervous mother, and I got anxious when strangers touched him or breathed in his general direction. My heart would beat faster and although I smiled at well-meaning-germ-infested people, inside I was ready to ditch the stroller and run screaming with my baby in my arms.
Around the age of 3 months, Big D came home after work to a terrible mess. It was late, around midnight. The house was a shambles, the dishes unwashed, the living room cluttered with Kleenexes, burp cloths, blankets and me in the center of it, holding Dylan on my shoulder, rubbing his back while the small lump just kept weeping and every once in a while, crying out in what seemed to be pain. He was warm, feverish, but I had taken his temperature several times and it was only slightly elevated. All the alarms in my heart and head were going off and I knew, in the depth of my soul that something was horribly wrong.
Knowing how neurotic I can be about germs and sickness, Big D tried to assure me that our bundle of joy simply had a fever and he would be fine….that I was breastfeeding and that was what was best, so everything would be fine. I explained that Dylan had barely nursed all day, he had hardly slept and that he had been crying since 8 a.m. that morning when he was awake. I insisted that something was wrong, that I could *feel* it and please would he take us to the hospital. I felt sick to my stomach that I might be right. I wanted to be the crazy mother, fretting over something small; I wanted to go the hospital for them to send us home with a script and a solution. For once I wanted to be just a hypochondriac.
That did not happen.
After a mere few minutes in the waiting room and answering a few questions, we were whisked into a cubicle with a pink striped curtain and told to wait for a nurse. It didn’t take long for a nurse to come and assess Dylan. Temperature, blood pressure and heart rate were all up. Clearly the medical professionals were concerned. Within an hour of arriving, a doctor informed us that they suspected meningitis and wanted to perform a spinal tap. I stood up to go with them and the nurse motioned for me to sit down. “You don’t want to be there,” she warned me. I disagreed and tried to stand again. “Please, you don’t want to be there. We will take good care of him, I promise. You may want to try nursing him when he comes back.” I sat, robotically. Big D put his arms around me and I stared at the steel rungs of the hospital bed.
I don’t recall our conversation, but I didn’t cry. Not then. Sure, it upset me, but I was angry more than anything. We were so happy. Why was this happening? I sat there, numb and puzzled.
When they returned Dylan to my arms, he was screaming and red. I tried to get him to nurse but all he wanted to do was nuzzle against my skin. It was heartbreaking how limp he became, almost like defeat.
The test for meningitis came back negative. Dylan was admitted to the children’s hospital and they started an IV drip of antibiotics. Solution for everything - or so they thought that day in March 1999.
For five entire days, Dylan got progressively worse. He developed a red rash on the trunk of his body. His eyes were bloodshot and he began sleeping all the time. His fever stuck at a low-grade. His tongue was red with white dots, and they called it strawberry tongue. He vomited and had diarrhea constantly. They put him on a feeding tube because he wasn’t eating. My best friend became the hospital breast pump. I would trudge down to this tiny room where they had 2 hospital-grade breast pumps, and Reader’s Digest Magazines from 1987. I would try to read to take my mind off of my only son, but I ended up staring at the brown wall in front of me and zone out while the machine hummed breast milk from my strained body. I hadn’t cried yet. I hadn’t slept either, and I barely ate. I was consumed by every detail of what was happening with our baby and couldn’t focus on anything else.
We hadn t talked about it, but I was thinking about funeral plans for Dylan. I didn t know how I would cope, but I was thinking through how life could ever just be if Dylan died. I felt empty and numb. Still I did not cry.
On that fifth day, the resident doctor approached me as I sat, holding Dylan’s tiny hand. He motioned for me to come into the hall so he could speak without waking our frail infant.
He looked me in the eyes and quietly said, “We think we know what Dylan has.”
I blinked.
He explained, We think Dylan has what’ s called Kawasaki’s Disease.
Still numb, I clinically asked, What do you do for that?
We give him a blood product, called Gamma Globulin, through his IV, for 24 hours. If he doesn’t show improvement, then we do another course for 24 hours. It has proven to be successful in Kawasaki’s cases. He’s young, but we caught it early and hopefully there has been no damage to his heart. Most cases, especially in rural areas, are not caught until 40 days in and the kids end up with heart aneurysms.
How did he get this? I was still, soaking up every word, trying to memorize everything the doctor said so that I could explain to Big D, who had to work through the day.
There is no known cause. We don’t know how kids get this. Dylan’s case is atypical. Most kids who get Kawasaki’s are of toddler age and of Asian decent. Dylan being a Caucasian 3 month old is very strange.
Well what if this isn’t Kawasaki’s? Will this Gamma Globulin hurt him; will there be side effects?
No. None.
At this point, I was angry again. Why hadn’t they figured this out sooner? What if his heart was damaged? What if it was too late for this treatment?
Then what the fuck are you waiting for? Keep in mind; I had not slept in 5 days.
We’ll start now, he said, and he put his hand on my shoulder. Not in a patronizing sort of way, more like I know you’re not being a bitch on purpose.
At some point, the head nurse came in and looked at me. I mean really looked at me. It was almost like in slow motion, or kind of blurry like a dream. I was so tired I was starting to slur speech and my eyes were all messed up.
You need to go home, she said.
What?
You need some sleep. Can your husband stay? Look at you. You need sleep.
I need to stay here, I replied calmly, I can’t go home. What if?
Go. She was insistent. Go home. Go straight to bed. Take a shower in the morning. Grab a coffee and eat something, THEN you can come back. You’re no good to Dylan if you’re running on empty.
My chin quiverred. The tears flowed from my eyes, and I fell into her arms. She hugged me tight and rubbed my back. It was like she knew I didn’t have anyone to lean on except for Big D, who had to work. He had a brand new job with a huge company and great potential. He couldn’t miss work.
I sobbed hard, leaning on her, letting everything out. It was ugly cry time and the tears would not stop. We must have stood there for a good 2-3 minutes, not talking, just her letting me cry it out. When our embrace broke, she handed me tissues, looked me in the eyes and told me that Dylan was in good hands and please to go home tonight. I don’t know if it was fatigue or the knowledge that she would not be argued with, but I nodded my head.
When Big D arrived at dinnertime, I took him outside the room, just like the doctor had done with me and explained everything, and answered his questions. The head nurse came back to talk to Big D about him staying and me going home.
I actually went home that night. I drove myself in our car, the 10 minutes to our apartment in a quiet neighbourhood in Vancouver. It was so weird having this terrible freedom of going home without Dylan to feed or change, or buckle into a car seat. I parked the car and unlocked our apartment door, standing in the doorway a moment to smell the familiar smell of home: Dried herbs hanging in the kitchen, the musty dense smell of wet shoes by the door (that is very common in Vancouver), and the faint smell of disposable diapers in a tote bag by the door.
The walk down our narrow hall to the living room was heavy. My shoulders felt heavy, my eyelids were definitely heavy and as I turned the corner into the living room, I could smell the nursery calling me. I darkened the doorway of Dylan’s bedroom and flipped the light switch. The bright blue paint shrunk my pupils and I closed my eyes. Tears fell. I swallowed hard. What kind of mother am I that I could leave my child in a hospital to come home and sleep in my comfortable bed? What did I eat that made him get sick from my breast milk; the same breast milk I insisted was best for him, despite the disdain from others? What did I expose him to at playgroup? At Baby Gap? On the street as strangers cooed at his innocent face? I fell to my knees and lay in the fetal position on the small mat in his room. I cried quietly, all the while wishing I could hold him and kiss him. My arms and lips ached for him. My entire heart felt as though it was being torn from my chest. It hurt so much.
48 hours and 2 Gamma Globulin treatments later, Dylan was not better. His fever had gone down one degree. That’s it.
Doctor’s then put him on steroids. A risky thing for an infant, but it worked and he recovered, albeit not completely. Today, at nearly 7 years old, he still has 2 aneurysms in his heart that hopefully will go away as his blood vessels grow to the size of these nagging things.
Every day is a blessing with Dylan. We aren’t supposed to worry unless he complains of chest pain, but telling a mother not to worry is like telling Troll Baby not to poop 4 times a day.
Dylan goes every year for a complete heart checkup and so far, so good. He has to take baby Aspirin, which makes him prone to nosebleeds, but he plays soccer and hockey without a problem, and is an exceptionally bright child who is creative and sweet. The day he was born, he curled up inside my heart. I wish I could curl up inside his and fix the damage.
Posted by Karen Sugarpants @
10:20 pm |
I’ve Been Published!
I submitted the following to a local parenting website and it was published today! YAY! I feel so official! The official link is www.londonmoms.ca or you can read it here:
So Christmas is looming over our heads and there are millions of commercials streaming across my television, followed by an I want that!
It is already taking its toll. That and the ba da ba ba ba I’m lovin’ it jingle is slowly sending me the way of the local psych ward. It’s on EVERY kid’s channel, in between EVERY commercial for kid’s toys. Toys made cheaply and requiring many batteries. Toys that cost an arm and a leg but don’t even last into the beginning of the next year. Toys I step on in the dark, nearly turning an ankle or puncturing the skin of my delicate feet. Gack!
It’s bad enough out on the roads, people cutting each other off with minivans and shopping carts, glaring at each other while they fight their way through the turmoil to create the perfect Christmas. Every store you go into is manned at the door with sad little faces of Girl Guides, Boy Scouts and the occasional hockey team, looking for donations to save the children of the whales who are friends with the seals and the whole lot of them have some rare disease I’ve never heard of. Enough already!
It’s bad enough that once I do find the perfect’ gift for that impossible-to-buy-for-family-member, that it costs my entire Christmas budget that I SWORE I would not break, no matter how hard perfection pulled on my heartstrings. Well my heartstrings are not of steel cable and there I stand, in the line-up with said perfect gift and imagining impossible-to-buy-for-family-member’s face when they open this prize. I whip out my credit card and shove aside the thoughts of the impending bills that will sit on my dishwasher in February like nightmares that won’t go away. Oh boy.
Not only am I running around trying to find something perfect for everyone in my family, but I also have to consider the visitors I will have during the holiday season. I have to make sure my Christmas lights are of the popular variety this year and if I don’t have LED lights, coupled with a timer that will illuminate my perfect house at the perfect time, then I just better crawl into a hole and plan to set my alarm for January, because that just won’t do. Not at all.
And what about the inside? Do I go with 4587 three-inch red bows tied perfectly to my tree this year, the newest technology of tinsel, or both? I have to subject the family to the tree picking ceremony, in which I drag everyone I love into the cold in early December to pick the biggest and most perfect tree I can’t afford. The husband and I bundle them all up and in the Christmas spirit, whatever THAT is, we drive to a lot where bearded men in lumber jackets suggest the best one for our family. After spending an hour, and $45, my family isn’t speaking to me and they wait in the car, trying to warm up what’s left of their toes. My toddler screams from beneath his 18 layers of wool, as my frozen fingers tie the tree to the roof. Before he breaks the sound barrier, my husband ties the last knot and we’re on our way. I decide I will get them all into the season by treating them to hot chocolate on the way home. Unfortunately, no one can get out of the car. We have tied them all in with tree rope.
The food at Christmas is nothing short of spectacular. I battle the temptations for what seems like an eternity. Every party I’m invited to, I am subjected to exorbitant amounts of butter, lard, and sugar. I try to stick to the veggie platters and light crisps but the smells and appearance of those dreadful treats are enough to suck me in. As my hips grow throughout December, I try to find time between shopping, parties, and fighting through parking lots to exercise. Leaving the gym with wet hair in the midst of our winter wonderland, I end up being a premium member of the virus-of-the-month-club. My mother warned you about that. Oh no! My mother! What to get her? I’ve somehow forgotten her in the chaos and I know I’ll never be forgiven if I don’t figure out something! But it’s December 24 th ! I’d better pack my bags, because I’m going on a guilt trip.
So by now you’ve got the picture. I’m here to tell you, this isn’t how it has to be. Perfection is futile and well, stupid . Don’t get sucked in. Don’t let your kids get sucked in. Slow down. Park as far from the store as possible and breathe the winter air deep and steady. You may not be able to avoid the crowds, but 10% of life is made up of what happens to you. 90% of life is decided by how you react. You cannot control the crowds, the scowls, and the tension. You can control how you react. Spend time in your jammies, playing with your kids. Decorate the tree with them and let them put the decorations anywhere their little arms can reach. Get a tree from the hardware store. Buy boxed cookies and treats. Eat what you want, and balance it out with a salad later. Go for a walk with the kids to look at other people’s lights, rather than trying to fit that gym in. Go tobogganing. Go skating. Go make snow angels on your front lawn and let them watch over you. Follow the lead of your kids and enjoy each other. Forget the perfect gift, tree, party, dress, or parking spot. Merry Christmas should mean Merry Christmas. Let your heart be light.
Posted by Karen Sugarpants @
6:33 pm |
Innocent……..nope!
Path of Destruction
He also bites the heads off of Little People!
DJ Jazzy Troll
mmmmspspspppppssssssspppppbbbbb!
