Finding my balance – What is Normal?

Term time started and even though I was aching to my bone from the summers’ chaos (and fun!), I couldn’t wait to get into the woods with the dog and soak in some nature.

I like to take the treacherous route sometimes. To climb over some rocks, slip in some mud, find things that are lesser found.

It’s a welcome distraction. Sometimes though I panic. I was walking a longside the river, admiring how the sunlight bounced off the water creating a glittery sheen when I could hear voices.

My anxiety started to set in. What if I get mugged? What if I have a violent confrontation? What if they steal my dog? Immediately my mind was flashing images of “stolen dog” posts on Facebook.. how would I tell Phil?

My mind has an annoying habit of always resorting to the worst case scenario.

As I reached the top of the hill I could see that it was two women, older than me, with a dog. I felt relieved. Not that they weren’t capable of a good mugging… just they didn’t fit my stereotype of a thug.

I prepared myself to let out a polite hello and then realised I knew one of the women. An ex colleague from over a decade ago.

In my excitement I almost forgot my words. I nearly opened with “I’m collecting conkers!!”, Instead I mustered up a jovial “hello you!”

Recognition of me took a few seconds and then she said “oh wow you haven’t changed!! How are you? What do you do now?”.

I always feel awkward explaining what I do now. I don’t often have to explain it as when Amy was born the news got out fast about the girl who had the terrifying birth story.

There were outpourings of messages even from people who didn’t even say hi to me in the street before all of this.

“I’m a full time carer for my daughter” I said.

Their faces went from happy to pitiful. “It’s okay though! I mean… it’s not.. she’s severely brain injured… but she’s stable!”.

I realised this also didn’t sound positive. There was a stunned and awkward silence. I had a surprised audience now.

I had taken the conversation from happy casual chatter to now quite serious stuff.

I don’t want it to go that way, but for some reason there is no light hearted way to explain our story. I explained that she has cerebral palsy and epilepsy.

“That must have you on constant alert!” one of them said. “Yes” I agreed, “I was always quite anxious before this but now I’m a nightmare!”.

I was pretty much portraying myself now as this mentally unstable frantic person… which yes to a degree I am… but what people don’t know is that actually.. this is our normal.

I don’t wake up each day surprised that my child is severely affected.

I do wake up knowing that the day could involve literally anything.

I don’t go to work, do a shift, come home from a vaguely uneventful day and then clock off. I spend the day checking my phone obsessively when she isn’t with me, but I don’t do it filled with panic. It’s just normal.

“I bet it has made you a stronger person” the lady said. She hit the nail on the head with this remark. I have become more assertive in a positive way.

I now know that yes, you have to fight a lot for children with complex needs. Not only do you have to fight, you will go through things that are hard to bear.. like watching the 10th cannula attempt on your child as they scream not knowing why this is happening.

How do you bounce back from that? I don’t know, but we do, somehow.

You become stronger mentally, physically, and even philosophically. This strength does come at a cost, we are exhausted, our emotional reserves are often depleted.

It makes it harder to maintain relationships, or to have any sort of routine or structure in life. But we persevere, through love, determination, and a longing to give our children the best life possible.

It’s only when you have encounters like this that you realise that your personal normal is very far removed from other peoples’ normal.

It can make it feel hard to relate to the world. I left the encounter feeling quite positive. I felt proud. I thought yes, my normal is a bit different… but I’m rocking it.

She gave me a reassuring squeeze of the shoulder, wished me well, and we parted ways. I felt great.

In that moment I reflected on those early days, and it made me see how far we have all come. I felt a surge of emotion. I wished Amy was with me in that moment so I could hug her and appreciate how glad I am that she is in our lives.

Recently I have been thinking a lot about cuddles with her. I remember at the start when she was a baby. She didn’t have a cerebral palsy diagnosis yet.

In my naivety I sort of assumed that she would “get better” or maybe just be a bit delayed.

I didn’t have a clue what to expect.

I remember holding her in my arms on the sofa and feeling heartbroken that she couldn’t seem to settle. Why weren’t we normal? I would find myself constantly comparing myself with other mums.

She would wriggle and writhe in my arms constantly. It was like she just couldn’t get comfortable.

For a long time I thought it was because I wasn’t set out to be a mum. I wasn’t a natural at this. I would see other people hold their babies and their babies melt comfortably into the embrace and fall asleep.

It caused… and still causes.. quite a deep anguish in my heart.

It was only later when I learned that physically my child is unable to stop moving. Her particular type of CP manifests itself in the form of constant unpredictable and rapid movements.

It takes a very long time to get her to sleep. It takes a lot of brain power for her to try and calm her muscles so that her body can sleep.

Sometimes it’s like her limbs are working against her. You can see how hard she tries to do something, but any slight heightening of emotion will set of a whole cycle of severe dystonic movements.

It looks exhausting. Her movement disorder is severe. We recently had a sling assessment and I was told it is not safe to hoist her on my own.

We tried 5 different slings and decided to try some other companies. We have tried several medications to no avail.

We have exhausted our options one medication at a time.

The movement disorder clinic are proposing brain surgery to help her (DBS). Imagine I had known back then what we were dealing with?

I wouldn’t have spent so much time berating myself wishing I was a better mum. I was doing my best, and that was enough.

I look back and I wish I knew back then that I wasn’t a bad mum. I wasn’t bad at holding my child. I didn’t know that 5 and a half years on I would still be holding and trying to calm the movements of my child.

I was just adapting to a new normal.

I sometimes have weeks where I am so busy. Collecting prescriptions, attending appointments with Amy at various hospitals, dealing with various illnesses and seizures.

Often our days are dictated by how Amy is feeling and behaving. I sometimes forget that all of these things aren’t getting in the way of normal.

They aren’t things to have over and done with so we can continue as normal. This is our normal. I wish I could stop viewing a lot of things as an inconvenience because actually this is how it will always be.

But I think it will take time to accept.

There is no normal. Not in any family. No one persons life is “normal”.

We all have our own normal. Some normals look a lot different to someone elses. And everyday I am learning to accept that and push forward.

Can We Talk About Medical PTSD?

Last year I wrote a blog about caregiver PTSD; a very common, yet unacknowledged phenomenon that occurs in parents of special needs kids.

I talked briefly about the medical PTSD aspect that affects two of my children, but there was, and is, so much more to say.

I don’t think I have met a child who is not afraid of the doctor at some point.

I remember hiding under the exam table when I was little, wishfully thinking that the doctor would open the door, think I wasn’t there, and leave me alone.

That fear subsided as I got older and more mature, but for kids with medical PTSD, that fear almost never goes away.

Many people mistake Medical PTSD for anxiety, and not to minimize the effects of anxiety, but this is something totally different.

Medical PTSD, from my own experience with my kids, can actually cause anxiety that spills over into other aspects of their life.

Medical PTSD is melting down the minute we enter a medical office of any kind; the smells, the atmosphere, the scrubs all bring back traumatic experiences of being hospitalized numerous times, the pain of recovering from many surgeries and being poked and prodded too many times to count.

Medical PTSD is not even able to examine my child properly in some instances because they won’t, and can’t calm down long enough. We have to have all dental procedures done under general anaesthesia because of this.

We try and combine dental work with other procedures that require anaesthesia to minimize stress and recovery time.

Medical PTSD is regressing emotionally after every hospital stay, every procedure. Sometimes it takes days to bounce back; sometimes, it takes weeks.

Medical PTSD is being scared to let Mom or Dad out of your sight when you are in the hospital, even at 8 years old, even if it’s just when they run to the bathroom, to sneak Ninja style out the door once your child falls asleep so you can do a cafeteria run or grab some much-needed coffee.

Medical PTSD is seeing absolute fear come over your child’s face at the mention of going to the doctor’s, even if the appointment is not for him.

Medical PTSD doesn’t only take a toll on the child who suffers from it; it affects those close to them as well.

Parents and caregivers of children with Medical PTSD experience their own form of distress, watching their kids go through all that they do.

So, to all the parents and caregivers of medically fragile kids out there: I see you, I get it, and you are not alone.

All the Things I Love About You

From the moment you wake up every morning, there is a contagious, bright smile on your face.

You may take a few minutes to stretch and clap your hands before agreeing to be picked up from your bed, but you always greet the day with happiness.

I love the way you gently pat your Daddy on his back, as he’s simultaneously patting yours, when he lifts you up for that first morning cuddle.

I may get just a little frustrated as you crawl away when I’m giving your morning meds, but you always cut your eyes at me in the funniest way to make me laugh.

At nearly nine years old, you certainly don’t need words to convey a little bit of sass and attitude. With merely the raise of an eyebrow, you tell me so very much.

I love that you have such a silly and strong personality.

When we’re out in public, the joy that you exude amazes me.

No matter where we are, you acknowledge every person that passes by, and you flash that dazzling grin of yours.

Everyone comments that you’re the happiest child they’ve ever seen. No one is a stranger; no one is unworthy or unwelcome to you.

I love that you don’t see others’ differences and that you have the ability to melt the hardest heart with your grace.

In the car on our way to school, I always ask you if you’re excited to see your teachers and friends. Your response of loud, robust clapping is easily understood.

On our trip, every morning, I play the same song for you, “Somebody to Love.” I light up when I hear you let out the most gleeful squeal, each time, with the very first note.

I sing way off key and I watch in the rearview mirror as you kick your little feet to the beat. I love our “conversations” and that music seems to move your soul, just like it does mine.

At home, you babble excitedly when your big brother leans down to speak to you.

When your Daddy is in the room, he’s never far out of your reach. Seeing you pull up to stand beside him, wanting to be constantly by his side, is the sweetest sight.

When I’m finally able to lure you away and grab you up to read a book, you snuggle up close and laugh when I kiss your forehead.

You amaze me by turning the pages each time I pause in reading. Every time we get to your favorite page, you let out the liveliest giggle and press your tiny nose into the picture.

I love the way you interact with your family, and the special bond that you share with each of us.

I love how smart you are and that you recognize all of your favorite things.

You are so very loved, little one. I could fill hundreds of pages with the reasons why you’re loved.

You’re one of a kind and you bring wonder into our lives.

I’ve never met another person with the strength, determination and zest for life that you have.

I love that I get to be your Mom. You make me want to be a better person, and our world is so much better because you’re in it.

I love all the wonderful things about you.