Saturday, 13 April 2013

Dear Alex, The Next Step?

13th April 2013


Dear Alex,


You sleep. Kids jolt and dream and turn and kick covers off. I write.

We had our time away and something that came out of it was how much rest you need. I am glad we did it, and that we did it all of us together. But how times have changed honey...

I have come back more tired than before I went! It was a great deal of work even with a carer too. But the kids loved every second of it and so my heart lifted every day at their happy chatter and big smiling faces.

We went swimming! You came in the water too...wheeled in by the carers and a float wrapped around you under your arms, you were a mixture of the innocent delight only a child shows and calm, as you floated and felt engulfed in water for the first time in nearly 19 months...

This path is filled with various stages, phases-some that keep coming around, some I've never experienced before, some I wish would never rear their heads again. These feelings at the moment I have are mixed. I've been living very day-by-day, sometimes hour-by-hour just to get through, but I feel now I need to think about us as a family and our future. How am I going to provide for this family of ours? Forever?! Now, very much going it alone, in the sense that you cannot advise, decide, help, support... I feel the weight of responsibility and almost a crossroads as I decide what to do next for the family's well being as a whole. It's all been about you for the last 19 months, but things have altered, you are not making progress quickly or changing greatly. We are on a very long path now of tiny changes and minuscule progress.

I'm unable to think emotionally, I'm numb again, I think not of the implications of you being this way forever, but I feel it creeping up on me like poison ivy, reeling and winding its way around my thoughts and my heart, it'll choke me at some point...

Because how can it be I'm never going to get you back how you were before? How will I ever be able to really confront that?


But I think I see our future more clearly now, and I don't see it being vastly different to the way we are living now.


So what's my next step for this family of ours?

Me xxxxxxxxxxxxxxxx

Tuesday, 9 April 2013

Dear Alex, First Time.

4th April 2013

Dear Alex,

First time in bed together, sleeping in the same bed 18 months, no longer, it has been. I didn't realise it would feel this good, like 'coming home'. Your side is up against the wall so you won't fall out. And I lie in your arm which holds me, regardless of its twitching and shaking.

I drift off to sleep in your right arm...

I drove, navigated, packed, organised with military precision the journey and the holiday, we are currently in Butlins at 'Spring Harvest' nearly 4 hours away from home. The cats are being fed by my lovely neighbour, my wonderful friend has taken Oliver for his holiday and I bundle Alex, a wheelchair a carer suitcases, equipment and supplies and 2 children in the car as the other 2 travel with the second carer coming.

So I did it! I made it and my goodness I feel grown up and actually quite proud of myself for achieving it!

...I am woken several times by kids not used to me being in a different room, let alone in a different bed from me. Who seek me for reassurance and I shush them and coax them back into bed. You groan much of the night and grind your teeth, a noise I have a phobia of. You kick your legs and shout out and I barely sleep as I lie there my sunken heart trying to grab onto some kind of positive acorn. But I realise that if this is every night, and I hear you at home so I'm sure it is, then I cannot sleep in the same bed as you...and my heart just keeps silently sinking in the dark of the wakeful night.

Still, I get up and take the kids for an early breakfast. Feeling their excitement and watching Mitzi cartwheel down the walkway, Lola holds my hand, I have Esmie in my arms and Monty sprints on ahead. The sun is shining and I have my amazing blessings. We start eating and I receive a call from the carer who needs me to come back and help with you. So the kids stay there with my friends and I go back to the Chalet to help.

You're in tears, kicking out and you only want me. I manage to dress/wash you and get you sat up in your chair. Finally calm. Holiday doesn't mean escaping from it all I realise, because you are as you are now and this our life, it is the way it is.

But I cannot break, despite being tired, and my expectations of a magical night sleeping in your arms, holiday bliss with no cares no worries, being quashed, I have to bottle up and put a tight lid on what I feel. I must go on with my racing heart and give everyone an amazing holiday.

Swimming with the kids almost takes my mind off things. Only you are sat at the edge of the pool with the carer next to you, you cannot see your kids play, their shouts of 'watch me! Watch me!' It's so hard not to think of these things, remembering how it 'used to be' how you would help them swim and jump in impressing them with a backflip or somersault into the water.

But times have changed and this is it and this is my life and I cling on to how I am blessed, simply and richly, regardless...


Me xxxxxxx