Sweet 16 and never…

Tomorrow my sweet girl turns sixteen. I can’t believe we are here. I feel blessed to have her and surprised at the speed time is moving. In Kmart the other day I asked what sort of birthday cake she would like and what she might like to take to school when she goes back. She said cupcakes and “Sweet kissed not.” “Oh”, I replied in a matter-of-fact that’s-a-cute-theme way. Then, a pause, and “Ohhh”, in a this-is-bigger-than-cake-toppers wobbly-voiced way. She has heard it many times in the last couple of weeks….sweet sixteen and never been kissed.

I don’t know what it means to her. I haven’t been game to ask. To me…it makes me sad. While I have every expectation that this feisty kid will live her life well and on her own terms I can’t foresee what that might look like. This kid is so loved and yet birthday party invitations are rare. She has lovely friends but never has she had a sleep over. Life is pretty good but different. Relationships are difficult for us all to build and maintain and she has a few extra challenges. Will she find a special friend who will recognise the worth of getting to know her?

This birthday eve I was hoping not to ponder a big question. This annual night has a tradition of finding the grief that has been silently walking alongside and throwing it in my path. Contemplating the meaning of life and love is important and significant. It is also risks derailing my heart. All young ladies should be able to titter behind their hands with friends over that special someone. I’m not saying she can’t or won’t I just recognise the extra layer of trickiness that will entail if she does indeed wish to titter. Sigh. Sweet 16 and never been kissed…yet. I shall bow to higher wisdom and leave it at that and up to her.  Happy birthday gorgeous girl.

Teen Queen

Recently I came across a quote which resonated. “Disability does not mean inability.” {I can’t recall where I read it and a quick search reveals many people have said it so I give credit to them all!} It applies to our girl in so many ways. She may not speak but communicates in other ways. Her legs don’t carry her around all of the time but her wheels sure do. Little miss may not be able to climb out of the window or swear at me but she is thirteen and a half and is wielding defiance like a sword!

The kid’s expertise at reading body language and facial expressions have helped her to develop epic skills of pushing my buttons! You may wonder how dear reader…let me tell you. It begins first thing in the morning when she has buckets of energy and I don’t. Getting her dressed can be akin to defending myself against a black belt with a wet paper towel. The legs kick {c o n s t a n t l y}, arms flail around and butt lifts off the bed with reps that would make a pilates instructor proud. “She can’t help it…she has cerebral palsy” you may think. Yes she does but she sooo can help it!

The attitude and determination with which she tackles life are a little harder to smile at when aimed at my stomach with full force before I have so much as had a cup of tea. She fools people with her sweet smile and delightful personality…there is a ninja hiding under that beautiful mane of hair. Let’s talk about planking. It may not be such a thing anymore but no one has told the kid. She times it perfectly. As soon as the hoist sling or two people lifting get close to her wheelchair under the impression that she is cooperating…boom. The head flings back…bottom up…legs straight just waiting for a selfie and social media praise for her extraordinary plank. Meanwhile poor helpers desperately encourage/plead/beg/yell at her to BEND. Guess what she does next? She laughs! Yep.

I often finish the morning routine in a sweat of exertion and frustration. A couple of days ago when she sat sweetly in her chair after a Tyson like fight to get pants on I asked her why. “Why do you do that when I know you can cooperate beautifully? Do you enjoy getting mum worked up?” Her answer? One of the most enthusiastic nods I have ever seen. So to anyone who may have thought the teenage years would be a little more cruisy with a kid with CP…umm no. Hormones still run rife and she finds a way to make her mumma crazy {ok, fair call…craz-ier!}. I have a little confession…I am a bit proud, she’s so clever even at my expense. But please don’t tell her. I am sure she has more weapons up her sleeve!

Grin and we might be able to bear it!

Accessibility is important in literally being able to get to school. But it isn’t everything. Access can be tweaked and small steps ramped if the school is willing. That is the key…being willing and accepting of a kid who does things a little differently. Last week we went on a somewhat scary tour of a mainstream high school. We listened to the principal and saw the facilities. We appreciated the ramps but were most impressed by the smiles. Smiles from teenaged students!

I now live with two teenagers and know they sometimes get a bad rap but they are not known for their cheerfulness. And the sunny looks happened not once but several times! In a world where my girl still has people stop in their tracks and stare, I was pleasantly stunned. As we had arrived the reality of transitioning to a whole new school hit hard. I was tempted to get back in the car before even trying. I know my girl so well but it takes a lot of time to teach all of her intricacies to others. And secondary schools can be prickly places for the most confident and able kid.

To succeed at school one needs to be able to communicate. Learning how missy talks takes some time and effort. And, of course, recognising a smart, funny person with a lot to say. Seeing a young  lady not just a wheelchair. In class time much of this will be the responsibility of an aide. But peers are so important to time at school. And these students filled me with hope.  For me, last week (and often) it all begins with a smile.

HIE…an anniversary

The “Hope for HIE” foundation has April 20th marked as a legacy…for children gone too soon. Have you heard of HIE? I hadn’t until…..I heard it from a neonatologist…in a small room…at The Royal Children’s Hospital…with a young nurse holding my hand. It is our girl’s diagnosis. Hypoxic Ischemic Encephalopathy.  (This is why it has an acronym…so hard to spell!)

In a strange coincidence today is also the anniversary of our foray into this new world. It’s the girls birthday. The day is always a bit tricky….for me not her, as usual. I celebrate her life and her excitement and I grieve and contemplate “what ifs” and have scary moments, pictures and conversations pop into my head. It has been quite the rollercoaster and that is typical of HIE.

She is exactly who she is supposed to be. I firmly believe that. (Yes…there IS a but!) But…..if I could take away her pain and help her do more of what she wants to do then I would. So I can’t help thinking…why didn’t the medical team cool her? How did they not see what I plainly see now with my untrained eye? This pointless pin ball game of “what ifs” is ricocheting around in my head.

But I want today to be joyful. I want to be grateful so I shall shake this off….to Taylor Swift if I must! This extraordinary kid has brought so much to so many. She attracts amazing people to us. She teaches every day. She makes me laugh and cry and be silly and dance. She exudes love from every pore. And today she has moved into teenager-hood…..today she is 13! Crazy right!

Considering her early prognosis this alone is incredible. So today I think we can both celebrate our Missy Moo and honour little ones with HIE who grew their angel wings by looking for joy. Join in. Look for Autumn (or Spring) colour. See that bird flying past. Smile at a young person helping out. Marvel at a toddlers chatter. Breathe in fresh air. Take a photo. Surprise a friend. Share a coffee.  Search out the joy…or make it…and tell me what you find. For in all of the craziness of a HIE diagnosis and the challenges it brings these little things really are what matters most. To my gorgeous teenager who reminds me of this….happy 13th birthday kiddo. Love you buckets.