Terminally Ill

By Jasmine Bailey-Barfuss

Terminally Ill is a grown up term – so is Chronic, A-typical, Sick.  I don’t like any of these words.  But I don’t believe an agreeable term actually exists for: my children are sick and struggle in some way every day.  And they’re all words that I hope I don’t say too often around my children.

However, the children are smart little cookies.  At times it seems that Isis carries the weight of the world on his little shoulders.  He sees the disabled parking pass dangling from the rear-view mirror. He has spent every winter since birth in the hospital, has spent countless hours in therapy and at specialist appointments.  He knows that he and his sister have Rigid Spine Muscular Dystrophy and that it isn’t just a thing, that he can’t join most of the games children play on the playground during recess unless adapted for him, that a common cold could put him in hospital, or worse.

I never thought of my children as “terminally ill,” though – not until a special team at Primary Children’s Hospital referred to them in this way.  It shocked me.  What were they talking about? Asking me if I had prepared for the end, if I would keep life support on or not? I proceeded to float outside of my body and view this conversation as if it were someone else’s life.

They were right, though.  There was a reason they had asked to speak with me as Phoenix lay in a bed in Intensive Care (now stable and out of danger).  I needed to make the hard decisions now, so if and when the time ever came, I would know what to do already.

And of course I knew my children were “terminal.”  I had seen Isis die and get resuscitated already. But no one had ever said it out loud before.  From very early on in Phoenix’s life we always secretly thought we may lose her to the inevitable spinal surgery she would need, but I had never added that up to having a “terminal” disease.  The research papers I had pawed over in a frantic attempt to understand this rare disease never said terminal.  But then, they didn’t say that much – such is the case with rare diseases.

The team brought me back to my body and very matter-of-factly, but compassionately, told it like it was.  So I had to think – what would I do if the children were on life support with no hope of pulling through?  What would I do if they needed a permanent trach?  Where would I draw the line – at what quality of life?  My father, while dying of Motor Neuron Disease, always said that he would not have a trach.  As a result, he didn’t live as long, but his quality of life was such that living a shorter time with this disease was, in a way, a blessing.  Now, what did I think for my children?

Phoenix was in Intensive Care with a common cold and I was sitting by her side watching her struggle to recover, panicked over the hugeness of the hospital bill and mulling over some pretty big issues.  Couldn’t I just sit there and hold her hand?  Couldn’t I just focus on her? But the seed had been planted and I had to think about the realities of having terminal children.

Once I had (somehow) thought it through logically and (somehow) made the tough decisions in my mind, a massive, all-encompassing weight lifted from my broken heart.  Acceptance replaced the dark weight that had burdened me for so long, and a strong desire to make each day as fun as it could possibly be – to cuddle the kids as often as I could, to hear them laugh every day, to hear myself laugh every day – these desires slowly filled the space where the darkness had lived for so long.

I can say the word “terminal” now and not cringe.  Acceptance is an amazing thing.

In the past I would work on “accepting” a new symptom as it arose, and then the next symptom would arise and I would go through the grieving and acceptance process all over again.  Add child number two into the mix and I honestly don’t know how I was ever not crying.  But this new acceptance felt different – it was an all-encompassing acceptance – the Big Acceptance that I needed to be able to move on and be a happy individual – the acceptance my husband had somehow mastered years before.

I, on the other hand, had been completely defined by the fact that I had sick children. If I was asked to write a bio about myself it would center around the fact that I had two children with Muscular Dystrophy, because that was all I thought about and all I focused my energies on.  I was a sad martyr.  I was no longer myself.  That vibrant, “crazy” and eccentric Jasmine of younger years did not exist any more, not even a glimpse of her.  I was an activist for my children’s health and for healthcare reform – and that was it.

That was sum of me.

And it was a highly stressful existence.  It is no wonder my marriage broke down – it simply was not a good enough way to live a life.  I was barely – barely coping day-to-day as this person.  And frankly, I was often not coping at all.

Acceptance really is an amazing thing.  It is all a process and I needed to be this sad-shell-of-a-Jasmine in order to reach the next stage – The Big Acceptance stage – the place where I could be happy despite life’s circumstances.  The place where I could see how well the children really are doing with the bodies they have been given.  They AMAZE me, these two angels given to us.

And I know that it is up to me to make the children’s lives, as well as my own life, as wonderful as possible.  No more dwelling on the negatives and what-ifs.  Lots more dwelling on love and laughter and each of our talents.

My new motto in life has become, “Life is short, live today.” That is why Phoenix and I stopped in Hawaii on our way back to Australia at Christmas.  That is why we rented a campervan and went off exploring Southwestern Australia.  That is why I let Phoenix run around the house without any knickers on – she loves it, so who cares!  That is why I sing like an opera diva at the top of my lungs and let the neighbors’ dogs howl along.  That is why I tickle Isis every day – there is nothing sweeter than that smile of his, and I saw it far too sparsely during The Year of Hell last year.  That is why I pick up my paintbrush now instead of just wishing I had written and illustrated that children’s book I’ve wanted to create for the last twelve years.  Life is too short to not go to every opera during opera season; it’s too short to not have dinners with friends and feed the ducks old crusty bread scraps up at first dawn.  Life is too short to not let the kids make a mess playing with cookie dough.  Life is too short to not lay on the grass and let the spring sun warm the soul.  It is too short to be angry; too short to not stop and literally smell the roses; too short to not get those dreadlocks I had been dreaming of for a year and too short to not say “I love you” and mean it.

Life is far too short.  So I am doing some living today and I must say, it feels wonderful!!!  I am so grateful to have been able to break away from some of that horrid darkness and enjoy a little more of the happy light in life.

For the full blog post and more, please visit Jasmine’s blog at:  http://glooart.com/blog/

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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