search instagram arrow-down
Luke Rosen

KIF1A on Twitter

Austin

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.

9 comments on “Austin

  1. Colleen Koran says:

    Ashleigh, you are strong and have a strong family unit. I look up to you and Dustin.

    Like

  2. Trudy says:

    Very well written Ashleigh. You and Dustin are both such amazing parents and Austin and Peyton are lucky for that. Love you all❤️

    Like

  3. Kathy Devanny says:

    Life is not easy, but is so very hard when it is your kid. I agree so much with dislike of “God does not give you more than you can handle”, God is love, and His own son suffered terribly. He wants only good for His children as we do for ours. See also https://patientworthy.com/2017/07/06/ulta-rare-mps-iii-story/

    Like

  4. Lorelei says:

    Oh my niece is so eloquent in her thoughts. Love you all to pieces and respect all you do as parents every day. Ashleigh, you are so strong and Grandma Debb does so much as well. What a great support system for Austin (& Peyton…because someone has to stop her from bugging her brother all the time 😉 ) ❤ ❤

    Like

  5. Evelyn Green says:

    Ashleigh,
    You are an amazing Mother and woman. I look forward to the wonderful pictures of your beautiful son, Austin. Deborah and I are friends through Desk and Derrick and when I see a new picture of Austin posted, it puts a smile on my face and love in my heart.

    If only every child had parents like you to love them, what a fantastic world this would be! It is obvious that Austin is completely and unconditionally loved.

    Much love to you and your family

    Like

  6. Darry says:

    We are as well here for you guys. You guys rock and have patience beyond my imagination. And have seen it over and over in the short time we got to know you guys. You have a fantastic family😊. Also one that is not a fan of that phrase. And wish the unexplainable could be explained. Cheers to you guys and all the hugs or coming your way🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

    Like

  7. Kar en says:

    As I look at Austin’s picture and see his beautiful smile, it is because of you and Dustin! He knows his childhood is wonderful and will never know different, and that is because he is so loved and so blessed to have you both.

    I have had the pleasure and blessings to know you all and I can only imagine the strength and love to have had to take from each other. I will give you hugs forever! Thank you for your words of not only wisdom, but of truth! xoxoxo

    Like

  8. anouk lanouette turgeon says:

    You are so right Ashleigh and I so totally agree with each word. (And I also hate that phrase.)

    Like

  9. Shayla says:

    You my dear continue to amaze me at how wonderful & real you are. Nothing you are dealing with is easy and I think if you guys so often. I appreciate every blessing in my world and wish I could pass them onto you just as much. We love you guys so much and you are my “hero mom”.

    Like

Leave a Reply
Your email address will not be published. Required fields are marked *

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: