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.

Mum…no

My kids both amaze me. They are both compassionate, caring and smart people. The clever bits are more difficult for most people to see in our girl. Not talking {in the traditional sense} tends to make some folk miss her intelligence. But tonight it shone. She needed something and let us know loud and clear.

The bed time routine around here is involved and lengthy. There are a plethora of medications to measure and deliver. A book to read. The usual PJs on and toileting after transferring to her bed from her wheelchair. She then needs a drink of water through her PEG and air vented out. Tooth brushing…face washing….special cleaning of her sore chin and cream applied. By the time we say goodnight a marathon  has been run. But tonight she protested. Her bed side was raised and we were walking out but she said “Mum no!”.

Sometimes she can be reluctant for us to leave so I list the bedtime routine to reassure her that all has been done and it’s time to sleep. Tonight she listened, expectantly. Then I got to one medication and her eyes lit up. I had forgotten it. She knew and she wasn’t going to let us leave without getting her point across. I’m so proud. And so was she…with a little “I told you so” glint in her eye. The kid is a rock star!

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.

Tantrums

Tiredness goes from a creep to a sprint by the end of the day. Shoulders slumping; feet shuffling. The twilight hours in the last week of a long school term dragged even more. So it’s understandable that grumpiness came with…right? The frustration of bed time so near and yet there are still things to achieve. The foot stamping started as things go awry. It’s all a bit too hard; taking too long; too tired; too sore. Had enough. A tantrum is coming. Boom…there it is. But this is neither of the kids. It is me.

Being a carer is getting harder. She is bigger-heavier-stronger. I am older and in more pain more frequently. The combination isn’t pretty. As parents most of us mourn the passing of babyhood and toddlerhood. But there is joy to be found watching your children move toward independence. It is different for us. There is joy but it is different.

Missy is fully is fully dependent still. She will always need help with everyday tasks. She has never been able to  get herself out of bed and make a ridiculous mess of breakfast all over the floor. She is unable to use the loo. She can’t pull a multitude of clothes out of her drawers and dress up a multi-layered storm. She just can’t. As well as making me sad…this makes me very tired. So I get frustrated…and then guilty. Oh the guilt of wanting to have an easier day. Because it’s not her fault, or mine. It just is. And sometimes it sucks.

{Dedicated to all those out there travelling a hard, suckish road at the moment. You are not alone.}

The Little Things

Under the guise of “I’ll feel better if I write about it” I was about to blog a whinge. A big one. I had gone to the extent of researching the effect of stress hormones on the body. Because surely I have lots of them surging around me in the last few days. First, I thought actually eating lunch {at 3pm} and having a coffee ay my favourite café would help. So I grabbed the mail and sat.

Then I opened the mail and cried. In a good way. And in public. You see, while cars can break and some may not do their jobs  the way you think they should {read ~ my way 🙂 } there are good folk out there. Thoughtful, kind people. It is often a little thing that tips me over the edge into the land of stressed, grumpy mum. But it is also seemingly small gestures that lift me up. Friday was a bad day. Awful. But I was lucky enough to receive kind messages, unexpected flowers, a gorgeous chauffeur and a mystery box of delicious kindness. And today, on the edge of grumpy-dom, the post came.

I don’t really know how much to say about the two people who made my day. One is a mum whose life has thrown her some big challenges lately and whom I admire greatly for her tenacity and determination. And the other  a young lady with a charitable heart who could teach adults a whole lot about community spirit. They both wrote to thank me. The thoughtfulness it took to put pen to paper and actually find a stamp touched me. The words they wrote brought tears.

In a week where the constancy of care and washing and juggling problems has me flailing their appreciation {when I didn’t even do anything} was much appreciated.

“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.