by Band Back Together | Oct 30, 2018 | Arthritis, Childhood Diseases And Disorders, Chronic Pediatric Illness, Family, Feelings, Grief, Group B Step, Health, Help For Grief And Grieving, How To Help A Friend With Infertility, How To Help A Parent With a Special Needs Child, Infertility, Loss, Meningitis, Muscular Dystrophy, Parenting, Pregnancy Complications, Sadness, Special Needs Parenting, Viral Infections |
Friday’s child is loving and giving.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.
by Band Back Together | Sep 6, 2010 | Baby Loss, Coping With Baby Loss, Grief, Group B Step, Help For Grief And Grieving, Loss |
Journal entry, Wednesday, June 11, 2003
After about an hour, the nurse came to the waiting room where we were sitting, having NO idea whatsoever what was going on… thinking our baby just had a cold or something. She said ever-so-calmly but with great concern, “We have him stabilized, but you have a VERY sick little boy. He was not breathing when we got him from you.” And then we were told we could see him shortly.
***************
My baby was THAT sick? How could that be? Twenty-four hours earlier he was pink and rosy and smell-goody and perfect? Twelve hours ago he acted like he didn’t feel well, but NOT BREATHING? How did I not know that? I’m his mother. I’m supposed to know these things.
Charlie was born 20 days earlier than this-happy, healthy and alive. From the moment he was born, he was wise. People commented on that in the hospital even. He was just alert. He had big brown eyes and a look in them that would melt your heart. In hindsight, he wasn’t meant for worldly things. He was meant to be a protector… and angel.
Back to the hospital. Jason and I went to see him when we were finally allowed back into the PICU. We were gently led to the bed where part of my soul still lives. My six pound baby had ten pounds of tubes and wires and things keeping him alive. I remember vividly not being able to breathe but still not realizing the severity of the situation.
We held vigil at the hospital for the next 3 days. In that time we were told that he had contracted late-onset Group B Strep which had caused meningitis and sepsis. They did a spinal tap which showed his spinal fluid looked like Jell-O instead of water and a CT scan showed most every part of his brain had had massive strokes, including his brain stem.
At last we were taken to the “OH SH*T” room where we were told our baby wasn’t going to live. He wasn’t going to have a first birthday or a first day of kindergarten, would never play t-ball or football or get a high school diploma. He would never meet the girl of his dreams and have beautiful babies and name them after his wonderful parents. In that tiny, dark room, our hopes and dreams were shattered.
On Friday the 13th, the most unnatural day to do this, we made the decision to turn off all support to our pride and joy. But we wanted to do it on our own time. And we weren’t ready right then.
Saturday morning started with my sister coming and bringing all the hats Charlie had received for gifts. For six hours we played “hat of the hour” and changed his hat and took pictures. He was held by us, his grandparents, aunts, uncles, anyone who came by and wanted to. It was a parade of visitors that day and for most it was the one and only time they had seen him. There were enough tears to fill a bathtub from friends who had driven several hours to pay their respects to our son before he took his final breaths. I can’t tell you how much that has meant to us over the last seven years.
At 5:00 on June 14th, 2003, just one day shy of his original due date, we gathered with about 2 dozen very special people in the tiny PICU room and our preacher had a baptism for our most precious son. Charlie was in a beautiful white t-shirt, a green and blue hat, holding his silky blanket and puppy dog. Our preacher spoke a few touching words that I wish I remember and baptized him. My sweet Aunt Diane started singing “Jesus Loves Me” and I remember sounds of moaning and crying coming out of mine and Jason’s mouths that in hindsight don’t seem human.
After everyone left the room, we were left with our son. Our intensive care doctor, Dr. Clark and nurses Julie and Tina there to help with the removal of support. In the next 43 minutes there were tears, kisses, touches, words of love and more tears. We were later told by Tina who was in the room, that as the machines flat-lined, a big ray of sunshine came in through the tiny crack in the curtain. It had been raining for 4 days non-stop so the ONLY explanation was that Charlie’s soul was leaving the room. At least that’s what I’m sticking with.
Charlie was bathed, wrapped in swaddling clothes and taken to the funeral home. Jason and I retreated to our home and opened the door to our new normal. And as our world stopped, everyone else’s went on, waking up to greet their Daddy’s with breakfast and homemade cards and fun on Father’s Day.
We woke up to the truth. That our lives would never be the same.
by Band Back Together | Sep 6, 2010 | Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Group B Step |
Your baby got sick. Your baby has lasting health problems. Your baby died. What’s next? Who do I blame? Surely somebody is to blame, right?
Not always. *
Our son Charlie died from late-onset Group B Strep in June of 2003. He was 24 days old. The doctors said there was a 50/50 chance that he got it from labor (me) or that he just got it from “life”. So my husband and I made the conscious choice to not dwell on or even think about who or what was to blame.
That’s crazy, you say. We could sue somebody and get lots of money if they were found to be at fault.
OR
On the other hand, I could blame myself daily and end up sinking into an even deeper depression and spending the rest of my life beating myself up for carrying GBS and killing my child.
No amount of money would bring my baby back. If there were a specific amount, I would beg, borrow, steal, cheat and maybe even kill to get enough money to bring him back. I would sue whomever and whatever I could if they would bring me back my sweet, pink, smell-goody, bright-eyed Charlie.
But that isn’t going to happen. Ever. So I have made peace with the fact that no negligence was done, by myself or my husband or any medical staff, and have told that part of my grief to take a hike. I’m not thinking about it anymore.
*Exception: If there was gross negligence on the part of a caregiver, doctor or hospital, and you have the resources and truly believe you have a case, then going after compensation may be okay. I’m not attorney, but I do know it won’t bring your child back or make your child whole again.
