I remember vividly when my first son was born I pictured his first day of school, our first trip to the beach, our first Christmas, our family holidays...
I dreamt of all the wonderful places I would bring him and imagined the fun we would have.
When my second son was born I had all the same milestones floating around in my head.
By the time my third son came along, my reality had changed drastically, all I pictured for my third son was his health. Milestones seemed unimportant.
With Ethan we have gone through the some of the usual milestones but we’ve also gone through ‘other’ milestones which we could have never seen coming.
These ‘other’ milestones, we learned after Ethan's diagnosis of Hunter syndrome were all ‘normal’ and in line with what the syndrome does to those who have it.
How clinical and cold does that sound, eh?
We heard that line an awful lot throughout the years especially when we felt something was wrong with Ethan or if we disagreed with the doctors and specialist.
It just became background noise to us, or perhaps that is what it had to be for us to have the strength to carry on; knowing Ethan and his own milestones would never match any dreams we could have ever dreamed of for him.
And that is sad; it can be debilitating at times. Sometimes it feels like we are grieving even though our son is very much still here. And that feeling of grief can lead to guilt.
Parenting is never guilt free for anyone.
Ethan brought us through some amazing milestones which we never thought we would ever see Ethan do or enjoy; going to Disneyland twice, winning a child of courage award, visiting a pilot in the cockpit just before we took off, making a documentary, taking a spin on a helicopter(just because Ethan is Ethan), watching him run, laugh and talk, listening to him sing, watching him dance like no one was watching and then telling those who stared to ‘Fug off’ (I’m sure you can guess what fug meant!)
Then there have been some very different milestones also; some were necessary for Ethan to get the most out of life, others were heartbreaking - his first hearing test, getting his first set of hearing aids, his first set of AFOs, his first handmade shoes, his first set of hand braces, his first IEP meeting, his first physio session, his first OT session, his first speech and language session, then his first; lung test, MRI, operation, Botox injection, five minute walk test, Echocardiogram, carpal tunnel test plus the procedure to correct it, scans, clinical photographs, his first hospital stay, his first wheelchair, his first swallow test, his first peg feed…
No one could have seen all those milestones fifteen years ago.
On Wednesday we face yet another milestone. This one is one that we have struggled with over the past few months especially.
We are going to a place where the words ‘end of life’ care are common place.
We are going to visit and stay in a children’s hospice for a few days. Let me be clear, Ethan is doing really really well currently but like all those experts like to remind us, Ethan has a terminal condition.
Ethan is fifteen which is seen as a ‘good’ age considering he has Hunter Syndrome , I even hate typing that but it is still a fact whether I type it or not.
We are going to a children’s hospice for two nights with Ethan. I've never been to a hospice let alone a children’s one.
I’m sure it's bright, airy, full of fun , love and laughter but I wonder if there is a sadness there too and if there is , will I be able to handle it, will my husband ?
That question I cannot know the answer to until we visit the hospice.
We were offered the support of the hospice simply because of Ethan's condition.
We heard about it years before but never felt comfortable with accepting their support as Ethan wasn’t what we would call ill at all. Ethan, at that time did not need medications, supports or help with feeding, dressing ...all he needed was two eyes on him at all times and a willing sprinter!
It was this time last year that the hospice was suggested to us again.
I still said no, Ethan had such a severe decline that I was afraid if I had said yes, that I was admitting that Ethan had not long left with us.
When we got Ethan stable again, we began to ask more about the hospice and what they do.
Turns out they do a lot of cool sh*t! There are fun days, parties, special events and even some sort of mock Oscar nights!
They include the whole family and they help us make some memories as a family. They also provide support to us and help us get what Ethan needs in his local community.
I think now is the right time to visit the hospice, while Ethan is well enough to enjoy what they offer and truthfully , if he has a rapid decline again, I think the support of the hospice will be invaluable to us as a family.
I don’t know how I will feel or how my husband will feel when we first step foot into Laura Lynn but I think Ethan will feel very special while there and I have no doubt that they will all love him.