Handling change, manual handling and handling reality all of which have been at the forefront of my mind for the past couple of weeks.
At a recent hospital appointment when Mojo's weight was taken we learnt that it had, at long last, reached the dizzy heights of the bottom of the spectrum. This means her little biro dot now sits proudly on the bottom of the range of 'normal' for her age. It feels weirdly secure, as though we have pulled ourselves up to the cliff edge after years of clinging on the edge by our fingernails. We're still on the edge of course and it's precarious and requires care and attention but we are, for now, facing the right direction.
Weight is good, weight means health, growth, development. Weight however, as it turns out, is quite heavy! Now I have a confession. I'm a wimp. I'm a tough nut emotionally these days but ask me to carry shopping or lift...well pretty much anything heavier than a cup of tea, and I complain. It's a long standing joke. When I was a Girl Guide my dad put my overnight camping backpack on me and I fell over backwards like a cartoon. A gym instructor once told me he'd never seen anyone as unbendy or as weak in the arms as me. I think he was genuinely impressed that I was surviving in the real world!!
I feel it when I go to move her from sofa to chair, when I carry her upstairs or lift her out of the bath. I feel her getting heavier. It is slow and gradual but transitional. We are moving from a time when I can carry her like a heavy baby to a time when we, and me probably sooner than most, are reliant on the wheelchair, hoists and winches. This will bring restrictions, restrictions on where we can go what we can do and where we can stay. It's a slow burning niggle at the back of my mind (and the bottom of my spine!).
With an eye to the future I have, over the years, signed up for various newsletters of companies which develop equipment and mobility aids etc. There is some amazing stuff out there to make life easier for our girl. Many of these companies offer great advice and community blogs as a resource for families.
One of these articles has sat unopened at the top of my inbox for the past few days. I read the subject line initially without thinking too much about it. But then, because it was there at the top of the pile every time I opened my computer, I kept thinking about it. It was an article aimed at helping people plan for the future and it was entitled 'What if we outlive our children?' and it sat there bold and unapologetic daring me to read it for days until I decided not to. I'm sure the article would have been uplifting in the end, exploring both options, who will take care of our children if we DON'T outlive them and how will we cope if and when we DO outlive them. I just wasn't in the right frame of mind for that rock and hard place dilemma this week.
Then, on the other side of the world a beautiful six year old girl died suddenly and our community of parents was rocked, once again, by the tragic loss of a child with HPE and the unavoidable reality check that follows. The little girl was a twin and her mother posted a picture a few days later of her equally beautiful twin sister dressed in a party frock on the way to her twin sister's 'going away' party. I wept for about 20 minutes for two children I do not know and their parents. I've not used their names intentionally as it's not my place to invade their privacy (and I sincerely hope my mentioning it doesn't), I don't know their mum, even online, but I've thought about her SO much and I've prayed so hard for her girls.
For us the 3rd August came and went this year. Four years since our baby's diagnosis landed in our lives. I found this year that it wasn't the initial meeting that I remembered, it was the follow up with an American locum doctor at Hammersmith which took place a few days later. This doctor had met other children with HPE before so we were sent to talk to her. After we looked at the MRI and talked about the likely outcomes she said 'do you have any questions' and I asked her if our baby would be able to smile. I don't know why that was what I wanted to know, but it was. Would I know if my baby was happy? As I scrolled through our recent holiday pictures that question came back to me. Would I know if she was happy....what do you think?
So as ever it is this girl and her smile that make handling possible. Handling emotionally, logistically and yes, even manually!!