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How Can One Child Have So Much Woe?

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.

When The Treatment Is Worse Than The Disease

I have a dear friend who has Hepatitis C. He went through interferon treatment, which is considered the gold standard for hepatitis C treatment, last year. The side effects were severe but it didn’t kill his disease and he will undergo an experimental protocol in January.

His wife, an even dearer friend, lived through hell during his treatment and now she has to return.

All I know how to do for them is be there when it starts. I will to walk through hell with them. They would do the same for me.

Ironically, they will probably have to one day. My better half has tested positive for Hepatitis C. I am just grateful that his viral load is still low enough that the doctors recommend against the interferon treatment; instead they are waiting, watching.

It is bad enough that these two men, so full of life and benevolent mischief, have this disease that wants to kill them. Yet, to add insult to injury, all four of us are recovering addicts. You’d think we had walked through enough hell just surviving addiction, getting clean, and finding a new way to live.

I feel so powerless, so inadequate. I want to scream. I want to fucking punch something

What Dad Taught Me

I’ve been thinking a lot about my dad lately. He was my hero.

My dad was the kind of guy who can get through Ivy League med school by drawing cartoons in the back of the class, and still somehow graduate in front. He wore a necklace that read, “War is not for children and other living things,” and took my family to Peter, Paul and Mary concerts.

Dad never read me bedtime stories. Instead, when I was four, he began explaining the theory of evolution in nightly increments. Tom Petty was often blasting in the car, and he used to do a weird hand-clapping maneuver that involved taking his hands on and off the steering wheel which I found exhilarating. He was lucky not to have been pulled over, but it made him the coolest person in the world.

Dad took me to Washington for our last trip. We sat in on an NPR recording and toured the White House. I didn’t understand why on Earth he would pack in THAT many museums visits into one trip. Turns out, he wanted to cram in a lifetime’s worth.

Dancing was the same thing. My father loved to dance with us whenever he could. One day, he had my sisters and I wear dresses, and gave us all a long, special dance to our favorite music (three-year old Carrie, and seven-year old me picked blended folk -too embarrassing to mention. Our favorite Hebrew album was included in line-up. Luckily, my youngest sister was still too little to talk.)

I never understood why he danced with us that day until years later, after he was gone, when I finally learned what a wedding was.

I could go on and on about my father, about what a wonderful guy he was, how he told us if he had to do it all over, he would have been an architect instead of a psychiatrist…

I can generally pull off humor in the most dire of situations, but when I write about my father, it’s hard. I’m still angry at the doctor’s mistake that caused him to hemorrhage and receive an HIV-infected blood transfusion two months before they started screening blood for HIV/AIDS. My dad was gentle, funny, and brilliant – a wonderful human being. I’m angry that my grandmother lost her only son, and I’m angry my mother was left alone with three kids. It’s a miracle my mother never contracted AIDS from my father, thus everyone else in my family is healthy. (We think my mother has Delta 32, making her resistant to AIDS.)

Still, this kind of thing is not supposed to happen.

On World AIDS Day, I want to look back, to smile and thank him for the presents he gave ME.

To the baby born on January 14th, 1952 at Beth Israel hospital in Newark, NJ, weighing 7lbs 11oz, and to the 42 year old man who stood at 6’4, thank you, Dad, for teaching me that no one is infallible. For teaching me that, regardless of race or socioeconomic status, we all are equal.

HIV/AIDS was still relatively new back when my father was first diagnosed. There was still enough stigma that, even in his obituary, my mother wrote he died of cancer because she was afraid of what the people in our small town would think if she told the truth.

Thank you, Dad, for teaching me the importance of being real and speaking the truth. Thank you for showing me firsthand that we all deserve a voice, especially those sick or marginalized.

I always told people the truth about my father, regardless of what people might think of me or my family. I lost friends, as did my mother, but I always wanted people to know that AIDS can happen to anyone.

I stopped believe in miracles that February. But I started believing in the ability of words to transform people’s lives.

Thank you, Dad, for having a bigger impact on my life than anything else in my twenty-five years. If I could give you all the presents your heart desires, I would.

That you lived gave me enough to last a lifetime.