Austin

By Ashleigh Aikman-Holland

 

After a particularly hard night (Note to self: no researching KIF1A after 9:00 pm), I awoke to a strategically placed note – left just for days like this! And it got me thinking.

People always tell me “God won’t give you any more than you can’t handle”, but I dislike this saying immensely.  I don’t handle my son’s diagnosis well; I have breakdowns, I get angry, overwhelmed and upset.  It is something we live with every day.  I am angry and sad.  It’s as if my feelings are not justified when I hear that dreaded phrase.  I don’t understand why God would punish me because I am ‘strong’ or punish a child because ‘we can handle it’.  I am not strong, I am not handling it – I am merely surviving and pulling it together for my family.  We try to give our child an amazing life, but his abilities are extremely limited.  Our hearts break when we hear children laughing or running around as these are things we will never get to experience with him.  Because Austin cannot exactly regress much further than he is (he does not walk, talk, sit, crawl or stand) our child and children like him will sadly live a shorter life than other children.  It’s our reality. Imagine going through each day knowing that your child’s days are numbered – the last thing you want to hear is “God won’t give you any more than you can’t handle”.  Apparently, the person who originally said this was not faced with extraordinary challenges.  Anyway, I digress.

The note I was referring to came from Austin’s respite worker.  She acknowledged how hard we were trying with him, how much we gave to him on a daily basis.  She spent numerous hours/days with us as a family and saw us on our bad days and good days.  There was no mention of advice, only kind words about our son and us as a family.  Words that I really needed to see in that specific moment.  “We could all take a lesson on how to love unconditionally from you” – and the tears started again. It’s true, I believe we have an extremely strong family unit; we are able to lean on each other, cry on each other’s shoulder and talk about our frustrations with funding issues and caring for a child with disabilities.  We don’t deserve to watch our child struggling, watch him suffer with seizures multiple times a day, but he does deserve to be loved unconditionally.

Do me a favor, the next time you are around someone in a tough situation, instead of repeating the above phrase, listen to them and try not to give any advice; I can almost bet they have already exhausted all options. Just stop and give them a hug.  Hug them like you mean it.  When you feel like it’s too tight of a hug, hug them tighter. They are going through a really tough time, and I can almost guarantee it will mean more than anything you could ever say.