I Need to Live Forever

Yesterday, while driving in the car, my husband and I had the conversation I have been dreading for years.

The conversation that makes my heart hurt and brings tears to my eyes instantly.

The conversation about the future. The one that needs to be discussed but breaks my heart to even think about.

When I first became a mother to a little boy, I pictured ball games and cleaning muddy feet before they walked into my house. I pictured a future so different than the one we were discussing.

Our son Jayden is seven and has severe Autism. He can talk – he tells me I want juice or I want pasta. But he cannot tell me if his head or stomach hurts.

He is seven and spends up to nine hours in therapy daily.

He always has a doctor appointment on the calendar.

He is not even fully potty trained yet.

He depends on my husband and I for everything.

But – what happens when we are gone?

Who will love him and care for him so gently like we do?

Who will listen to Sesame Street for hours a day and not go completely crazy?

This is the scariest part of Autism for me.

I can handle any hard day he has, even if I am left rattled and clinging to survival. I can handle it because I have so much love for his smiling face, but who will be there for him when my husband and I are gone?

Who will lay in the bed while he pushes his legs under ours until he falls asleep?

We were driving home from the almost two hour drive we have from the military base to pick up his medicine and we were stopped because of an accident. There was a car on fire and reality hit hard.

Jayden has a younger five-year-old brother Jaxon that is the best little helper around. He does so much for his older brother from holding his hand and getting him inside our house safety so I can unload groceries to cleaning up his puzzles he leaves everywhere.

He is his brother’s biggest cheerleader, and he celebrates every milestone like he personally won the lottery. If we are in a situation where Jayden’s tablet dies, we do not even have to ask Jaxon, he is already coming to the rescue and giving his brother his tablet.

But the reality is when we are gone, I do not know who will step in and take the role of caretaker.

Will he spend hours a day asking for his Daddy like he does when he is at work?

Jayden is a full-time job; he can be naked in five seconds or less when you turn around to get something. He has zero awareness of safety, so you always need to be on high alert.

I want Jaxon to have a full life because as a five-year-old he has scarified a lot more than a five-year-old can understand.

Jaxon does it without a second thought, but I do not want his whole life to revolve around Jayden’s needs.

I want him to live, to play ball, enjoy his friends, go to college, get married and have children of his own.

Reality has a way to really smack you in face most of the time when you are not expecting it to.

As we were there watching the fire truck and ambulance come and go from the scene of a terrible accident that was less than two hundred feet away. My husband and I talked about what Jayden’s future will look like without us.

We talked about our family, residential facilities, and funding.

Most parents are worried about paying for four years of college.

I wish that paying for two boys to attend college was what we were discussing.

Written by, Kirby Morgan

My name is Kirby and I am the mom to two amazing little boys Jayden who is seven, Jaxon who is four and I have a have one bonus daughter Kayla who is seventeen from my husband’s previous marriage. My son Jayden was diagnosed with Autism at two years and four months old. I was pregnant with Jaxon when I received Jayden’s diagnosis and Jaxon was born four months after Jayden’s diagnosis. You can follow our journey at Beyond Autism Jayden’s Journey.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

23 likes
Prev post: Finding My IndependenceNext post: What if the Danger to Yourself is You?

Related posts

About Me
About Me

Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

READ MORE

Join Coop’s Troop
Join Coop’s Troop

Become a Supporter of Finding Cooper's Voice and join our online community, Coop's Troop. Membership includes Facebook Lives with our family, giveaways and more.
JOIN NOW

FindingCoopersVoice
Most Popular
Sign up for Finding Cooper's Voice
* = required field

powered by MailChimp!