My Boy Since Cancer
Since my six-year-old son Jack was diagnosed with Leukemia in January, there have been both sweeping changes and little changes in our life. Some are harder to describe than others - some more subtle while others are glaring. Sometimes aspects of his personality that were there before might come out in a more noticeable way, or they might be more hidden, protected. Jack is still himself, of course, but the version of him we are living with now isn’t as steady or balanced. I often wonder how much of him is changing permanently because of this experience.
I’m not sure I can still describe him as a “happy-go-lucky” kid, for instance, which would have aptly described him last year.
Now his mood can change on a dime, and he is VERY sensitive. He is quick to cry, quick to anger, and quick to feel defeated. No amount of good-natured teasing is allowed. A simple behavior correction or disagreeing statement will send him running to his bedroom with a shout of, “I’m going away from you now!” If he gets angry, he’ll growl and even hit himself in the head.
Source: bandbacktogether.com
I Need A Break
I need a break.
From reality.
From responsibility.
From being a daughter.
From being a sister.
From being a friend.
From being me.
I need a break from coming home from a full day of work to a full night of work. Fixing dinner, cleaning up, potty time, bath time, jammie time, story-time, bed time.
Even when my kids are spouting puppy dogs and rainbows out of their asses, sometimes I look at them, and wish I were laying on a raft in a pool by myself, margarita in one hand, guacamole in the other.
I am tired.
Tired of having to be there for someone somehow 24-hours a day. Tired of the endless responsibilities of adulthood. Tired of society’s pressure to be perfect at everything all the time, while looking like I love every minute of it.
Source: bandbacktogether.com
Ask the Band: Is It Me?
Here at The Band, we believe in kicking stigmas to the curb, flinging glitter, and shining a light into the dark. And now? Your bandmate needs a sounding board.
It’s time to Ask The Band!
Is it me? Am I the problem? That’s what I’m wondering today, in tears for the second time this week.
We’ve opened our home to my husband’s sons. Two teenage boys I had no hand in raising during their formative years. Two boys who havesevere problems due to the neglect and abusethey suffered at the hands of their mother and stepfather over the years.
I also have a special needs daughter, and our younger child to care for.
I battle with the kids daily - it’s leaving me exhausted and fed-up. I feel like I’m doing it alone, since my husband, their father, refuses to change his work schedule, so that he’s home before the kids go to bed.
I am diabetic and I have dietary needs that aren’t being met, to ensure we have enough food for these two growing boys. I used my own money to make sure they had proper-fitting clothing for school, instead of using it to take care of myself, like I usually do.
Source: bandbacktogether.com
The Day Motherhood Sucked
A few weeks ago, I put out a Twitter call for hugs from The Band, and boy, you know I got them. This is why…
My heart is heavy. I’ve had to make some very difficult parenting decisions that tore my heart out. I love my children so fiercely. I can’t imagine my world without them. But today, my home is absent one child. Her absence is felt.
I feel it when it’s dark and she doesn’t come out of her room for one last hug or a complaint of “I can’t sleep.”
Source: bandbacktogether.com
Pediatric Kidney Cancer: Wilms Tumors
My youngest son was born with a condition called hydronephrosis. Hydronephrosis means that his urine was flowing from his bladder back up into his kidneys, causing kidney damage. In addition, one of his kidneys was smaller than the other.
The original surgery to repair his ‘plumbing problem’ was perfomed just before his first birthday. Unfortunately, we had an unexpected complication - his bladder decided not to work for the eight months following. This resulted in a week-long hospitalization as he was in acute renal failure.
We’ve been through a long, hard year handling his urological issues: two major surgeries, acute renal failure, straight catheterization at least five times a day, four months with nephrostomy tubes [nephrostomy tubes are tubes that are surgically placed in his back - placed in his kidneys and hooked to drainage tubes and catheter bags], before we finally thought he was on the road to good health.
Then, we noticed his left arm looked swollen - but not his right. We were referred him to a hematologist who believed he had “hemihypertrophy,” a diagnosis that was confirmed by the geneticist we met with in September.
Source: bandbacktogether.com
I Will… Come Out On Top In 2012
This year, it’s time to take action. It’s time to pull our heads out of our asses and make some plans for world domination.
How? By telling the world, not what we want to do this year, but what we will.
So what will YOU do this year?
It’s already been a rough year for me. Just seven days in, my five-year old son was diagnosed with Leukemia. It has floored me. I am still in shock. Daily I struggle with the WHY WHY WHY of it all.
Still, I can make this year my bitch. I can not - and WILL NOT - let the whole year be a sinking ship.
I will take care of myself. This means giving myself a break, letting myself off the hook, taking days off work when I need to, continuing my healing through therapy, taking naps… It also means getting dressed every day, showering, and not letting myself slip into a depression. I will continue to do things that bring me joy - like travel - and try to let go of the worry.
Source: bandbacktogether.com
I Was Born Broken
January marks the first of our Spotlight Series, and we’re choosing to honor Aunt Becky’s daughter, Amelia, who is the sole reason that The Band exists.
Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
45 years ago, I came into this world after the expected length of time with all ten fingers and all ten 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.
Source: bandbacktogether.com
Diagnosis: Memories Of Fear And The Unknown
January marks the first of our Spotlight Series, and we’re choosing to honor Aunt Becky’s daughter, Amelia, who is the sole reason that The Band exists.
Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
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.
Source: bandbacktogether.com
Okay, Pediatric Cancer – It Is SO ON
October is Breast Cancer Awareness Month. Here at The Band, we’re devoting October to ALL types of cancer. We’d be
honored to share any of your cancer stories.
I’ve always thought cancer was a bitch. But now I know that it’s so much worse than words can express.
Yesterday, my best friend Jill called to say that her two-year-old daughter Emma has a tumor. It started as a bump on her tailbone that wouldn’t go away. After an MRI, a CT scan, blood work, and a biopsy, they know that it’s a germ cell cancer that has spread from her pelvis to her lungs. She starts chemotherapy tomorrow. Jill and her husband are shocked and terrified, of course, and all of us who love them are in disbelief.
I know intellectually that little kids get cancer. But it’s blowing my mind that it’s happening to someone we love so much.
Last week, Jill and her husband worked; their daughter went to preschool; they ran errands and watched college football on the weekend.
Today, they’re the parents of a child with cancer, and they live at a hospital. Emma can’t go back to daycare while she’s getting chemo, so Jill will have to quit her job, losing that income as well as the opportunity to do work that she loves. Their life is upside down and sideways, a jack-knifed rig aside an unfamiliar road.
Source: bandbacktogether.com
A Day On Dialysis For A Child
It’s no secret that my daughter Quinnlin was nearing dialysis before her transplant evaluation. Her kidney function trended downward at a steady pace for a couple of years and then dropped at an alarming rate, over a period of 4 months. She would likely have had a catheter placed for dialysis within a month of having her transplant. If I hadn’t pushed for a preemptive transplant, she would likely have been on dialysis until we could arrange testing and surgery.
We had all seen the effects of kidney failure in my seven-year old son, Gage. We’d all witnessed Gage’s decline and I assume we all shared some silent guilt that he got as bad as he did – without dialysis he would have died in a matter of weeks – before transplant evaluation. By the time we got the evaluation, he had very little kidney function left. His body was being poisoned from the inside out.
I’m still astounded that a child should have to go on dialysis while waiting for a kidney, even when there are willing potential donors, and in our case, multiple willing potential donors.
It’s a sign that they’ve lost touch with the impact of dialysis on the child and the family. I know that dialysis kept my son alive and I am grateful for that option or he would have died. Don’t misunderstand that. I am grateful every day for a machine that kept my son alive until he got his new kidney.
Source: bandbacktogether.com
Weight Of The World
Today started with a second dose of IV drugs for my three-year-old daughter and the news that we were free to leave the Children’s Emergency Department once the infusion was complete. Laila’s pediatrician would arrange the remainder of the antibiotic therapy to treat the fleeting fever of unknown origin.
Fine.
My hip was threatening to jump ship after being subjected to a night of (non) sleep on an ER gurney. As far as Laila, the fever, and the long night in the ER, it seemed a bit insane. Kids get fevers. Then they go away. She didn’t even look sick. At three AM, while I was struggling to get comfortable, Laila was laughing and playing in her wheelchair.
But three weeks ago, Laila had a central line (a long-term, tunneled IV catheter) surgically placed in her chest so that we could deliver additional nutrition to our mysterious little peanut. Now it seems that none of the usual rules of common sense apply when it comes to fevers. After a whirlwind of a day that involved phone call after phone call between me, the infusion company, the pediatrician and the lab to try to avoid ending up at the hospital with my medically fragile child, we were sent to Big City Hospital so that Laila’s reaction to the drugs could be monitored.
Source: bandbacktogether.com
Julia At Support For Special Needs Goes To 11
To celebrate our one year anniversary, we’re going to work to highlight other sites around the Internet that are Doing Good. Every Tuesday at noon (central time, yo), we’re going to bring you a story of why someone else chooses to devote their time Doing Good.
You know our beginnings. Now it’s time to see theirs.
I’d like to introduce you to Julia from Support for Special Needs. Becky and I had the pleasure of meeting Julia at Type A Parent Conference in June and fell madly in love with her — after we realized she wasn’t THE MOVIE STAR Julia Roberts and realized she was A BIGGER AND BETTER STAR than Julia Roberts. She’s got an amazing site that helps find common ground among those who are raising children with special needs. But it’s not our story to tell, it’s hers!
Source: bandbacktogether.com
Our Normal Is Different
Our normal is different.
What I don’t think a lot of healthy-heart parents understand is that a pill or surgery won’t “fix” our special-heart babies. Yes, it will treat their symptoms or correct a defect, but ultimately, we always watch, wait and worry.
My son has hypertrophic cardiomyopathy. He takes one little pill each day, sees his cardiologist every six months, and is told not to participate in any competitive sports. He has been “stable” his entire life, but just under the surface is the constant worry that today will be the day something happens.
Every day that he wakes up, I am grateful.
He is thirteen, and I still watch him sleep, checking for his chest to rise and fall. I listen for his breathing. I don’t think parents of heart-healthy children can comprehend the daily knot in my stomach while watching and waiting.
This summer he wanted to go to sleep-away camp. His cardiologist said no. He was worried about the most dangerous potential complication: dehydration. The doctor didn’t have faith that a nineteen-year old counselor would understand the severity of our situation.
Source: bandbacktogether.com
Trying To Hold It All Together
I’m trying not to lose it right now. Really trying.
I don’t want to cry in front of them. But I’m so tired right now. It’s just been one of those days.
I’m waiting for a call back from the pediatrician because he definitely has sprained his foot/toes or has some injury that is making it too painful to walk, although his x-rays indicate there probably isn’t a break. This happened yesterday at his third trial class of Tae Kwon Do, which he claims to really like, but he kicked the block instead of the target because he was not paying attention when the instructor was showing the class what to do.
Granted, there were about forty kids there and he was one of only about three white belts. His doctor thinks he has mild ADHD but the more I watch him, I’m sure it’s more than mild. He cannot focus. He cannot be still. He flaps ALL THE TIME. It’s killing me that I’ve never noticed these things before. Or have they become worse only recently? He has many classic Asperger personality “quirks” but not enough to classify him. Because my son is worried he doesn’t have enough friends, or a best friend. It’s breaking my heart.
Source: bandbacktogether.com
