How Can One Child Have So Much Woe?

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 | 6 comments

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.