I because Cerebral Palsy

On Sunday missy and I met a curious little dude at the market. His mum gently suggested he say hi. He was quite shy so my girl used her communication book to ask his name and tell him hers. He asked his mum why she’s in a wheelchair. The lovely mum began to explain but she wanted to use her book again. It was the first time I have ever seen her explain her own diagnosis….my voice may have wavered as I said the words on her behalf…”I because cerebral palsy.” The mum (who I now have a mummy crush on) took the opportunity to relate missy’s words to the para-olympics they had been watching at home. Meanwhile his baby brother and my baby-adoring girl made eyes and had a little chat.

 I had seen the little man looking and took a sharp breath in expecting past experiences….but his mum turned it around naturally and gently. She made it ok for him to ask questions and answered them all. She encouraged him to interact and check out missy’s communication book but didn’t insist. Parents often look awkward when their kids stare and I get that. It is not always easy to know what to do and is a rare thing for a parent to ace it like this lovely mum did. A simple smile would have sufficed but this chat was so much more.

It reminded me of another occasion. A time when a child looked at and spoke about mine. It was so very different. I was shocked by what came From his mouth . There have been numerous occasions in between. Pointing. Staring. Swivel-on-the-spot-mouth-gaping. And a gorgeous girl who simply wanted to tell missy they had the same dolly. On Sunday we met a mum who made it normal for her son to be curious. And my girl….she shone. She took the opportunity to speak for herself, about herself.  At what the girl calls “country market” we were reminded that there are good people out there…really good ones. And for that we are grateful.

A numbers game

Numbers are my thing. I am comfortable with calculus and positively perky about Pythagoras. But sometimes numbers work against me. There are a bunch of “non-fun” figures I can reel off from recent experience. It has been 3 months now since my girl has been well. This included 4 visits to the emergency department and 2 hospital admissions. As well as 4 courses of antibiotics and twice daily finger prick blood tests. My missy endured 7 X-rays, 3 ultrasounds, a PEGogram and a full body bone scan coordinated by 3 medical teams. Her last admission involved 31 nursing shifts. Nearly 1.5 litres of fluid was drained from around her lung by a surgically inserted tube. Yes just 1 lung was affected…the other was doing all of the work keeping her breathing. She’s only 12 years old but has lost at least 4 kilos in that time…and I think I found them! Her last stay in hospital was 11 days. That’s a long time. The kid has not had a full day of school since the 17th of August and had missed many other days of school in the weeks prior to that. But, even for me, not everything is measureable.

No number can come close to capturing the worry…the fear…the stress…the exhaustion. Nor the admiration. For adversity tests our strength and despite, or more likely in spite of, everything that was thrown her way….the kid came out on top. She is still tired and battling medication side effects but she is at school today! I applaud her courage and marvel at her forgiveness. The pain she endured and tests she cooperated with would floor most adults.  Being a tween, contributing to her own health care is more important than ever. This can be an enormous challenge for a non-verbal child. But she did so very well. In the early days of her second admission to hospital her plaintive “help” nearly broke my heart. Even then she consistently asked and answered questions not letting fatigue beat her. The cheeky sense of humour (that I think comes with her red hair!) snuck out from time to time too. When asked by a doctor if she needed anything her reply was “Yes, MY room”. Apparently she thought the nurses and I were asking too many questions about pain relief before removing her chest tube. Her repeated reply when asked for her thoughts…”Hurry up. Do it.”. Just Nike that thing hey kid…the bravest of the brave.

And now, after 8 straight weeks of home or hospital, I hope we have come out the other side. Have we come out unscathed? No. Hospital has left it’s scars on her…and us, her family. Added to her numbers could be the very small hours of sleep for me, or the huge number of kilometres driven to and from the city every day by A, or the number of days I felt like I was no longer mother to her brother, or the amount of tears shed while begging her to stay strong. It was just too close…she was too sick….she became a ghost of herself. The numbers that now have to build back up are her hours at school and some healthy weight gain. And the one figure that has always been and will remain the same is how much I love her and her brother…infinity.

What I am glad I told a newer mum….and what I wish I had added

 
Fellow mum, I was pleased to meet you yesterday. You took me back ten years. To early days when I was still reeling from a diagnosis and unsure of what lay ahead. I enjoyed our chat. And I meant what I said…..

You are doing a great job.”

It’s true and important for you to hear. Even (or maybe especially) from someone you just met. Not to mention your child is simply gorgeous and clearly adores you. But there is more. I wish I had told you:

  • Many of us {in the club} have a particular concern for our kid apart from the obvious fear of hospitalisation. For me it was, and is, learning. I am a teacher so I guess that stands to reason. The first time I found the courage to ask about my daughter’s cognitive ability is etched in a frightful memory. The specialists response was grave and uncertain. But my kid learns…and loves it. The worry that sits heaviest in you is more than understandable. I think your child will surprise you too.
  • A diagnosis is most helpful when filling out forms {heads up…there will be many more forms!} and that’s about it. Trust yourself and those in your medical and therapy posse who have earned you respect. And keep asking other parents. Their experience is gold.
  • I am still smiling thinking of the way you described your kids together. They are lucky to have each other…and you. Siblings have a tricky road and you are paving it well.
  • Google describes “normal” as conforming to a standard; usual, typical or expected. I say every family has their own definition and you are rocking yours.
  • It is still early days for you. I distinctly remember waking up one day when Missy was about 3 years old thinking “Ok. So this is us now…let’s do it.”  It really was an overnight change in my headspace that made all the difference to tackling whatever came our way including expecting the unexpected. Patience is indeed a difficult lesson but it will be rewarded.

The most helpful pearl a stranger passed on to me was as simple as it was magnificent. “Enjoy your baby.” I think you already have that one covered.

“It was still beautiful even though it was broken”

Throw back Thursday. I wrote this piece back in March 2010 during a creative writing class. The title was the topic given. I remember struggling with the word “broken” in the context of my girl but once her story was in my head it had to be told.

“Where does the red hair come from?”

The first time that question was asked, I sucked in my breath and looked wide-eyed at the tiny bundle before me. She didn’t cry, didn’t really look at me but I touched her face and smiled hello oblivious to this quiet significance.

Throughout the pregnancy she emitted a quiet wisdom. I confided in friends. She’s different somehow. No, nothing is wrong. It feels like she has a definite purpose. She will teach. I struggled to recall it fondly as this tiny person had a seizure in my arms. This time was supposed to be easier; the second child should mean a familiarity with motherhood and no fear. The special care nursery brought fear. It bred fear within it’s walls.

A plethora of tests. A surge of white-coated visitors. “We’ve tested for this and tested for that. It’s not some of the bad ones.” But it was bad. She didn’t cry; she couldn’t suck; she had seizures; she lived in a humidicrib. My mind scattered thoughts in rhythm with the expressing machine I was attached to. My stomach dropped knowing she couldn’t suckle this precious nutrition herself. I chatted with her while I held the feeding tube high but it wasn’t meant to be this way.

I had to leave her there. I was discharged and had to go home. The cadence of expressing continued but on my couch, at home, without her. “Enjoy some sleep while you can” they said. It was as if the very marrow had been drained from my bones as I sat, at 2 am, extracting milk into a machine instead of feeding my precious girl.

The smell of the hand wash made my stomach churn. Walk in the door, wash your hands. Touch your nose, wash your hands. I cherished the short time I could touch her and admire her gentle face. That stunning hair. I learnt to hold tubes and leads out of the way to change her nappy. I learnt to look at her instead of the monitor when an alarm sounded. Being her mum was still beautiful even though our world had been turned upside down.

It’s just a cold…

I cried last night. Cried and cried. My girl has been sick. A horrible virus that brought a fever and a cough. The thing about a kid with a dodgy swallow and poor immune system is these colds are so much harder. So much. There’s vomiting from coughing a lot. Suction to keep her airway safe. The struggle to keep her hydrated and out of hospital. Diarrhoea because of antibiotics. Then, when she starts to improve, her dystonia goes nuts. So I swing between worried and tired and frustrated and helpless and guilty and back to tired.

The worry began as soon as she felt a bit hot. It cranked into high gear when I walked into her room at 5:30am to find her moaning with a temperature pushing 40C and seizures distorting her pretty face. So I stripped her off…cooled her down…made silent bargains…grabbed the phone, just in case. I wouldn’t (or even couldn’t) be any where else but Missy is hard(er) work when so sick. She needs constant supervision which often means a jog between her (watching, waiting and hoping not to see any more fits) and the laundry to clean vomit off clothes, towels, wheelchair and the carpet. She outdid herself this time though…never before have I copped vomit to the back of the head in the car while driving to the doctor! Keeping fluid up to her is almost a full time job itself…..down her PEG, by hand, 10mls at a time…slowly but constantly.

The stuff to worry about and do is hard….the swirl in my head even more of a challenge. Waking time spent holding my breath, watching; dark hours listening for any cough or noise from the next room…dreading movement that may herald a seizure. The what ifs and possibilities play havoc with my brain. The memories of previous hospitalisations haunt me. I remember this one time (not at band camp…that would be fun) when she’d been unwell, had a huge seizure and ended up taking a siren aided ride to hospital. The ward had already been home for a couple of days when I remember looking at her, still not properly conscious and thinking…”What if this is it? What if I don’t get my smiley girl back?”. At times like this I don’t need to relive past troubles, but I do.

The dystonia Missy has is constant but she has learnt to work with it-use it to make her arms and legs do what she wants. When she’s sick it’s different. It pains her and worries me. All of her muscles contract and she writhes in her wheelchair with a frown and a moan and nothing able to comfort her. While her fever and seizures and lung health worry me, this stage frustrates me the most. As pointless as it is, I tell her to stop it…”Just stop it!”…like she can. Enter motherly guilt! And tears. That has been my rollercoaster for two weeks. Days tending to her needs and the piles of washing and trying oh so hard to be patient as she slams her poor little toes on the metal footplate of her wheelchair. Taking deep breaths as I watch her rub and push her face on her shoulder supports increasing the patch of red, irritated skin. By the end of the day my patience is hanging by a thread and she is exhausted. I get grumpy for her…then with her…then feel guilty all the while completely knackered. The chronic sorrow of grieving for what isn’t amplifies it all. It started as just a cold…but this kid doesn’t do “just”.

 

 

http://www.rch.org.au/kidsinfo/fact_sheets/Brain_injury_Dystonia/

Help?!?

I scared myself last week…like really scared…at 3am, the time for all sensible thinking! I had endured a day of back pain that came out of nowhere (not exactly true but I hadn’t done anything stupid) and packed a punch. Bed brought little relief with stabs in every wiggle or turn. In the end I rose to walk the house hoping for ease…then returned to attempt to sleep. One change of position and the pain stopped….stopped. All I could think was how could I push a wheelchair from a wheelchair. I had to get back up and walk to reassure myself that I could. I have never been so close to calling an ambulance…for me.

So began a very challenging week. The pain was barely manageable and the restricted movement meant I couldn’t do my job. No dressing, hoisting, changing, caring for my girl. No driving. I have really struggled with it…still do. It’s great to be the independent type…except when it’s not. I have had to ask for and accept help. Hard. Don’t get me wrong I am overwhelmingly appreciative of all of the help I have received. Dinners, many support workers shifts, coffee, lifts to appointments, drivers to pick up my girl, drop offs and pick ups for my boy, cleaning….truly amazing. But I still think I should always be able to do all of that myself.

The thing I have been mulling over (as I sit and sit some more) about the human condition is there is hard stuff and associated fears. Hopefully not constantly but it’s around. I have been contemplating how I can now make this challenging experience part of my story without it defining me. I have always had a “funny back”. (Language was of importance in my family as a kid so even with a congenital deformity I was discouraged away from the term “bad back” as “everyone has one of those”.) The physical strain of caring for a child with high needs is great. I still don’t want to be the carer with the bad back but I can’t ignore it and I realise I am different due to my recent experience. Not necessarily in a good or bad way but different. Lately I have been admiring a friend for the way she is incorporating her challenges into her own story. She may or may not agree with me, and I know it hasn’t been easy but she seems to be striking the balance well. The experience doesn’t define her but she acknowledges the way she has changed…and grown. I also recognise that for others melding a difficult time into their story is very distressing.

For me, at the moment, I think I am getting there. Changing my perception of this difficult time has made an enormous amount of difference. I still have pain today, much more so than yesterday and that will ebb and flow. There is still fear a horrible flare will recur and still fear that I won’t be able to do everything a want to do as a parent and a carer and as a person. That I won’t be able to look after myself much less my family. But I have managed to get my head in a different space to make it ok. It’s part of me, part of my story. It is a work in progress mind you…there is still editing to be done.

One of the things I admire about my daughter is that she seems to do that seamlessly. Well she seems to because I don’t really know how much of a challenge it is in her head. But there is something about her that enables this kid to incorporate difficult experiences into her story without letting them define her and without caring about other peoples perceptions. She just does her thing…and that’s pretty cool. That’s my aim…to manage the pain and fear as she does. But don’t expect superwoman. There will still be tears and swearing and whingeing to whoever will listen cos man it hurts.

Day 3

Autumn sunshine was streaming through the windows. So, I thought I would sit down in a warm spot with a cup of tea to read my book. Just for a bit while she sleeps. It seemed like a good idea. Then, without notice, one of the characters in my previously light-hearted novel was diagnosed with cancer. And that was it. The catalyst for a dam-burst.

There have been a few tears and a lot of stomach clenching, arm prickling, head spinning moments since her seizure Friday night but I seemed to have missed the day three blues…or is that horrors. It always happens, I’ve noticed. The third day after a big seizure or health scare adrenaline seems to subside and all of the fear and panic of the event is felt…all at once. I thought I had skipped it. But no. Day seven has become day three.

Only a couple of hours ago I was joking about the “fun” of cleaning phlegm and the follow through vomit of a huge cough off the carpet. You see she’s still not well. She had a day and a half of no visible seizure activity then the little ones came back. Poor Missy only managed a half a day at school this week before a very croaky voice (kinda funny in a non-verbal kid…her voice was about an octave lower!) precipitated an awful cough. So she managed to enjoy her birthday party (thankfully) but is now too hot and coughing up more gunk than her little body should be able to hold.

So I have had to keep going…avoiding that number between 2 and 4…until now. One line in a book brought me undone. I felt a little upset…good books will do that to me…but as one tear was shed I realised I couldn’t stop. A wave of gut wrenching sobs engulfed me. I could feel an ugly noise trying to escape but I sucked it back in to avoid waking my girl. Instead the rasping shake of my diaphragm trying to take in air took over my whole upper body. I dropped the book……….and the strain of the last seven days and cried and cried. Seizures suck; the ugly fear of what could happen is sickening. Living with the anticipation of “the next one” is…….I have no eloquent words, it sucks too! And now I’m *^%@# (insert whichever expletive suits your own sensibilities) e x h a u s t e d.