July 6th 2012
As I leave today (having had a rare visit on my own with you) I watch for a while through the centre doors…it’s lunchtime, you sit, head upright, being fed your lunch. Eating, swallowing well, it’s an amazing sight.
Full of promise and how far you’ve made it.
I get to come back in again tonight to see you, Lola comes with me, some mummy and daddy time on her own. She makes herself a picnic all by herself, tuna mayonnaise sandwiches, flapjack, cucumber an orange and an apple and twiglets. She brushes her hair, gets herself in a pretty dress and stripy socks and sandals. Bless her heart, she’s growing up fast…
At first you were in your chair, but you’re tired and ask to go to bed. You seem flat, unhappy. Lola lays down beside you and we have a few laughs, but your energy ebbs low and your frown and tears overtake the small smiles. You tell Lola you love her, stroke her head, cuddle her close and cry into her hair. You kiss and you kiss her and tell me ‘this feels so weird’ referring to you and your situation.
We both try hard to lift your low spirits, but they’re too low. I lay next to you on the side the arm and hand can’t move. All I can do is cuddle you, tell you how far you’ve come. The mountain you’ve already climbed. To look back at the moment, see what you have done.
This is a part of an amazing recovery process-awareness, and I have been hoping for this for nine long months. That you know where you have to go, that you were not always like this, that the fog would lift. I did not hope for the distress, the tears, the heartache…I don’t know that I expected it to be anything else, I just hoped, and still do, it would not be so painful.
But how can it not be? When you, Alex, see where you are.
The improvements are mountains you’ve overcome, but you are unable to see it now, you feel there’s so far to go…
You shout at me when we have to leave, it’s 9.30pm, visiting finishes at 10, and I have to get back to the other kids. ‘go away, leave me!’ over and over. I do not let myself absorb it, I fight hard to not take it in. I know you’re lashing out, angry, frustrated. I repeat to you that I am here no matter what, whether you tell me to go, I will be back in everyday, I am never quitting, and neither are you.
To see you like this is torture. But when I leave, you have calmed, you sleep, and Lola is reassured that you have your lion and the teddy they bought for you. She thinks you’ll sleep well with them.
This is agony Alex, I will never know what you truly feel, I can only teeter on the outside and imagine.
But today you stood for the first time, alone, for 3 seconds. Chest out, stomach pulled in, straight, and you held it for 3 seconds. This is another first. Each week there seems to be another first, and maybe you cannot see it through your anguish to be further on, but I will remind you, and I will never quit.
I am amazed by you, you still, 10 and a half years on, blow me away Alex Wood, and I love you for better, for worse, in sickness and in health…you're not getting rid of me!
I love every inch of you, through and through, and I know our love is strong enough to fight this battle…you are healing, recovering, as agonisingly slow as it is, just imagine another nine months form here where you’ll be…
I am back in tomorrow with the kids. We’ll go out, get some fresh air, breathe, together as a family.
You’re still my everything, and am here, bound to you for an eternity.
I hope you have peace in your dreams tonight.