6 weeks of summer holidays in front of me. 6 weeks with a 5 year old with Duchenne Muscular Dystrophy and Autism and his 2.5 year old whirlwind of a neuro-typical, very active little brother.
How do I feel about it? Overwhelmed. And then guilty. And the guilt comes in confusing, competing forms.
I feel guilty that I feel overwhelmed. I feel that I should be enjoying every second of the time I have with my boys
A feeling that is constantly compounded by the knowledge that my son has a progressive and life limiting disease.
I should cherish every second, every moment because I know that there will be a time that Sebastian won’t be here, and I’ll look back and wish I had been more patient, more present. Less irritated by snack demands and constant bickering.
The huge pressure of “making memories” that will get us through the tough times to come.
More than that, I feel an ever present anxiety that threatens to overtake me if I stand still for long enough. I feel an urgent need to make sure that we “do” things, that time isn’t wasted.
Not just because his time with us is limited but because also because his mobility is.
I find myself wondering what he will be able to do this time next year and knowing that there are things that will soon become impossible. It is in the back of my head all of the time.
And then I feel guilt for Toby, for his brother who runs through life at 100 miles an hour, builds himself balance bike courses in the garden, naturally gravitates towards other children, hero worships old boys and who would love an older brother who could do all of that with him.
Sebastian’s interaction with him is so much better than it was a year ago, and I have a huge amount of hope for their relationship.
I see the delicate strands of what will be a of brotherly love grow stronger every day.
But I also know that Toby wants to rugby tackle him to the floor, wants to do “ready steady go” races, wants an older brother to talk to him and involve him in his games and would follow around the house.
Our summer activities have to cater for Sebastian’s needs over Toby’s. There is no way of getting round that. And I feel guilt.
Here’s what I’m realising that the guilt boils down to. Acceptance. It all comes down to acceptance. I keep thinking that I’ve got that one down, but I’m learning that it’s a constantly changing journey.
This summer is different from the ones before it in that the gaps are widening.
My friends who have children of Sebastian’s age are on a different path.
That path was more parallel a year ago, the differences were easier to ignore. As our children grow, ours is veering in a different direction. And I’m really not saying that direction is worse.
But it is sometimes just acknowledging that is huge. Sebastian’s peers are reaching the stage where those tiny advances of independence add up to make a big difference.
In equal measure, there are extra things that I have to consider about every trip out, every activity.
Just little things, but the balancing act is precarious. The plates in the air threaten to fall.
I want to carry on doing the same things, keeping up with the same activities, giving Sebastian and Toby the same life I always would have done.
And then I am weighed down by a familiar sense of failure when I don’t quite manage to do it.When the competing mobility limitations, autistic needs and two year old tantrums mean that we all end up in a sweaty tearful mess.
Because here it is: my son is disabled. I can’t just carry on regardless, I can’t just pretend that we can do it all.
While I will always do my absolute best to ensure that he is fully included, that we fill his life with everything we can, it is also true that our lives are not the same as they would have been without Duchenne.
I battle with that every day, with knowing that I cannot change that.
And while that will never mean that our lives are full of sadness, it does mean admitting that some are things that are harder, that make the day more challenging and there are actually things that we just can’t do.
There are days when I feel like I can put my big girl pants on and give it all a good go. And then there are days when I have to accept my own limitations as well as those given to us by Duchenne.
So I’m working on knowing that I am doing the best I can on a journey I often feel ill-equipped for.
That the guilt I feel for the days that I know I didn’t make the most of him, that going to bed wondering if I gave him enough joy, enough love , enough life to make up for the fact that he won’t get long enough is an impossible standard to set myself.
I'm also learning that we find our moments of imperfect perfection through it all.
And that Sebastian’s smile when he splashes in the paddling pool will stay with me forever.