It is days like today that I hate my child’s disability
Yes, I can say that. I have the right to break this optimistic facade every now and then…
I have days, like today, when I feel like her disability makes me put her needs above (to a degree) the needs of my other children.
Ballgames are missed. Play times are cut short. Night time stories are rushed. And, one-on-one moments are fading.
I hate that.
And, it’s not LB’s fault. I 100% know that- but do they?
I try my best to work in these times, to create these moments; but, they seem to be dwindling as her needs are increasing.
Like today, Ry & K are going to a local campground with their granny & cousins. There will be lots of fun in the sun. Laughter will be filling the air. Cannonball contests will definitely happen. Memories will be made.
And I wont be there.
I fear that I am falling out of their memories.
I fear that all they will remember about me is: Mom was always home with LB or I don’t know where mom was, but she wasn’t there.
That is my biggest fear.
Because I try, I try to be there with them.
I try to do little things alone with them. To quietly, each night, look them in the eyes and say just how much I love them. To, when possible, set LB down when they tempt me with a race, a tickle war or ask me to color.
I try to be apart of their memories, more than just a background spectator.
But, my fear is that it’s not enough.
They will grow up – so fast, I know it.
I will blink, and they will be gone.
My chance will be over.
And, all they will be left with are the memories – but will I be there?
And then, not only do I fear selfishly for me, but I fear for LB too.
Will they resent her?
Again, I try so hard to make it so they don’t. To help them understand that she loves them so much, and it’s nothing she is doing intentionally.
I pray that they grow up and see that. To see that, whatever happens to her that keeps my time monopolized, it’s not her fault.
It would break my heart to see something like this slowly deteriorate the bond they all share.
Ry & K have such a pure and doting love for LB; and, she absolutely adores them. They are her world.
For any of them to lose that, would break me.
All, I can do is pray and hope that as they grow older:
First, I am able to be there for them – to share in these special moments, to create our own special moments, and to make every moment special.
and, Second, that they know that no matter where I am – in the background, on the sidelines, or right by their side – I am, always was, and always will be their number 1 fan.
For every single one of them: Ry, K, & LB
– no one will ever love you more than me
(with the exception of your daddy & God, of course)