Tuesday, July 20, 2010

A tale of two brothers, oh and two mothers.....


So I was supposed to tell you all about the story of Brody and his Mum, Vicki who is my beautiful friend....  (previous blog) I was on the countdown until Brody's bone marrow transplant which is tomorrow.  I have to be honest.  I've found it really hard to write about what Vicki might be feeling.  I've avoided the blog as I've not had the right words.  Yes, it's true, I've been short on words.  Not often that happens but when dealng with matters as serious as Brody's situation, trust, me.  Words are hard to find.

What I can report is that along with a bit of writers bock I've also had dramas in my world.  J had a wonderful game of shared attention, reciprocal play and imagination with a friend from preschool yesterday.  Oh how wonderful indeed!  Until he wound up in the emergency room!  Yes, a game of chasey wet pear shaped and J ht a pole at full pelt leaving him with a head injury worthy of 5 hours in the local hospital emergency room under observation.

I watched my beautiful boy in awe as he took his hospital visit in his stride and in absolute and complete honesty he could not be picked out as any different to any other kid waiting his turn (albeit impatiently, as they all were).

My J, so hungry but not allowed to eat until he had been examined by a doctor, desperate for chips from the chip machine "stalking" the patrons who placed their $2 in the machine and chose their chips...  "What do you like in there?" he asked everyone.  "Oh look, here come your chips!" He exclaimed as they made the journey through the machine to the hungry customer's hand and J looking on in envy but no meltdown in sight to the surprise and complete delight to me who sat silently watching with no need to step in and "save" him or "explain" him.  Oh sure, he was a bit too close to people and talked a bit too much and a bit too loud but he waited.  He waited for FIVE hours and he followed instruction and he didn't meltdown.  Not once.  So proud I was of my baby who's come such a long way.

The doctor saw him eventually and agreed he had a BAD bump on his head and needed to be watched for signs of concussion but we could watch him at home.  (He's fine now).  So we were allowed to go and our scare for J's health and wellbeing was over for now.

We are so lucky and we know it.

So to go back to my friend's Vicki, Brody and Luke.  They are not so lucky.  They are not sitting in an emergency room but they are, indeed sitting in a hospital.  In isolation.  Tomorrow Luke is donating his bone marrow to Brody.

My son gets to play in the yard with sticks, cars and jump on the trampolene and Brody will be receiving bone marrow into his little body.  Brody who is autistic and tricky and has trouble understanding what on earth is going on around him, just like my boys do is receiving his brother's life saving gift.

I watch on in joy as my two boys share their toys with the structured help of therapists and early intervention and Vicki watches on as HER boys share life.  At least we all hope it's life.

Brody has always been life personified when I've seen him.  He is a happy, energetic and light filled little soul who, just like his mum, makes you want to hug him within moments of meeting him.  Brody has a room filling smile and an infectious laugh and he demands, "Pizza on Tuesdays" whenever you see him.  Brody is brave.

My hospital experience with my boy was scary and unpleasant but my hospital experience was what every parent wishes for in the long run....... I got to take my healthy boy home.

Will Vicki afford the same luxury?

YES!  Lift her up, think of her and get this boy over the line.

I have no say in the outcome.  None of us do.  But lets all hope and join together for Vicki and her boys.

Tomorrow I'll give you an update and I might tell you some of those stories I promised in the previous blog.  I have a feeling my wirters block will be lifted when tomorrow is all said and done.

Here's their links if you want to learn more: Brody's blog, Brody's facebook page


****Post Post note......  FANTASTIC NEWS!  Brody is in remission.  Vicki received the best Christmas present in the world with that news.  Oh and the playdate we dreamed of and the afternoon BBQ with us mums enjoying a wine.....  We are doing that VERY soon.  Dreams can come true.

Thursday, July 15, 2010

Can YOU Imagine?


It's been a while again.  Life is crazy.  It's life though and how precious is that in itself?  Mine might be crazy but it's full and promising and ALIVE with life itself.  I have the luxury of healthy children (yes they have "issues" because of being on the Autism Spectrum but they are physically fit and they have bright and happy futures if we put in the hard yards now to help them develop).

Can YOU imagine life any other way?  Can YOU imagine your children's lives any other way than with a future.  Not even a bright and happy one but a future guaranteed for now with no threat of anything taking the light out of their souls in the immediate future.  Whilst my kids have a childhood of difficulty in some ways and face being different than others, they have souls lit up with the very essence of what we call life.  They are strapping pictures of health with loud, joyful laughter and games together of sharing and sometimes not so much of the sharing but rather boistrous scuffles and the odd clobber between brothers that is natural, "normal" and part of that thing called life again.

Some days the very nature of their life of light and energy exhausts me and I cannot wait for them to succumb to that heavenly place us parents know as bedtime.  I sigh with relief that I have a break from their bounding natures and over active personalities that are enough to wear anyone out.  Oh for a moment of peace!!

Can YOU imagine life any other way? 

In truth no one actually WANTS to imagine life any other way but I'm going to ask you to on this post.  I'm going to take you there.  Where no one can imagine their life or their children's lives being. 

I'm asking you to go there with me because I CAN imagine all too well what life is like when life is not a given for your child ut a luxury and a maybe.  I don't know it for my own children but I've been watching such a life through a friend.  Not a long time friend, she's a relatively new friend who is NOW a lifelong friend.  My sister of the soul as I call her.  My lonely but smiling, brave friend who loves her boys and is facing the most unimaginable situation that any of us could ever imagine especially because none of us wnat to imagine it.

Through truly awful circumstances I have met an incredible woman called Vicki.  She is one of those people with a shining light of life, an open heart, an even more open smile even in the face of what can only be described as tragedy and a generous warm spirit that is infectious.  Vicki makes you want to be like her.  She is grace personified and kindness wrapped into human form who makes you want to hug her within minutes of meeting her.  She's beautiful in every way and I am simply in awe of this amazing lady who is doing it tough.

Vicki is the mother of two boys.  Here is where I want you to start imagining.....  This is no fairy tale though.  This is my friend's life.....  Are you ready?  Imagine you have a wonderful and healthy teenage son who you love dearly and that you also have a younger son who is nearly 5 years old and in his short life has been diagnosed with Epilepsy, ADHD, Autism and now.....  Leukaemia.  Have you imagined it yet?  Vicki does not imagine it, she lives it EVERY day.  For the last 11 months, Vicki has been at her youngest son's side in a children's hospital helping him endure treatment for an illness that sucks the life out of his tiny little body and confuses a child with limited understanding as it is about why he is being subjected to test after test and procedure after procedure.  Brody needs substantial support for his Autism and his needs are so incredibly complex that he has Cancer experts who do not understand Autism in his life whilst the Autism experts do not understand the Cancer.  Can YOU imagine?

I have been blessed by meeting this mother and son team and I love them deeply.  They are my friends but we don't visit each other at our houses for playdates with the kids or a barbecue and a few drinks EVER.  We cannot.  Brody is in isolation to protect him in the lead up to his bone marrow transplant which is in 6 days time.  Brody's chances are not high.  It's a fact.  Vicki knows his odds and she does what all mothers who have been given this vile, unfair and horrible lot in life would do....   She loves her son.  She lives for him and fights for him.  Vicki advocates for him and comforts him when no one else can.  Most importantly to Brody who has trouble understanding his world, Vicki understands HIM and she helps him make sense of everything.  Did I mention she fights for him?  The strength to stand upright every day after sleeping in a hospital room stretcher bed, beside your child in pain and confusion and put one foot in front of the other is a strength I feel in awe of every moment that I am lucky enough to spend with this little family and in the moments I'm simply thinking about them and those are many many moments. 

I dream of those visits with the kids one day.  I hope we get to raise a glass of wine together and watch our kids play, run about in my backyard and maybe even fight.  I dream of stick "sword" fights and superhero pretend games and billy cart races down our hill whilst we laugh together and yell at the boys to "play nice...."  I dont' care how they play really and neither would Vicki.  I think I speak for both of us that we just want them playing.  Playing and living with their full life ahead of them.

For now though, Brody writes my kids letters from hospital and my kids know Brody through videos and photos I've taken and they all call each other friends even though none of these special boys have actually met in "real" life.

I'm not telling you all the whole story tonight.  I'm just asking you all to imagine for a while.  There's much more to the story than what I've shared so far.  For the next 6 days in the countdown to Brody's hopefully, life saving bone marrow transplant I'll tell you more.  I'll tell you how Vicki and I met.  I'll share why we connected and how I became part of their special lives.  I'll share some of our funny jokes and side splitting moments where we've laughed until we cried and then cried until we've sobbed together.  I'll tell you the moments I've shared with Brody the Brave Boy (Facebook Page) who stole my heart and found a place in it beside my own boys and I'll share pictures of my friends Brody and Vicki to help YOU imagine.

I'll share one more thing for now.....  The healthy teenage son of Vicki's who I mentioned before in passing when "introducing" you to this family?  Well it's that son who is Brody's bone marrow donor.

Vicki is the mother of one boy getting a bone marrow transplant and also the mother of a boy giving the ultimate gift.

Can YOU imagine?

To be continued........



Visit Vicki and Brody here if you really really can't wait for my posts over the next 6 days: Brody's Blog