Defying the odds as a special needs parent

There was a time after Jax was born when I thought my life was over. I didn’t see a “hope and a future.” All I could see were feeding tubes, feelings of desperation, and what seemed like the never-ending race to find a diagnosis for her. I told myself there was no way we could have more kids. I wasn’t sure if I was going to be able to work and take care of her. And I questioned if I would ever be able to laugh and enjoy life again. 

You could say my life was a bit upside-down at the ripe age of 26. 

These feelings didn’t last forever, and neither did the stage of grief and despair. 

As one day passed, then the next, and then a few more, my perspective and outlook on life and our situation began to change. I would attribute this shift to other special needs moms who have gone before me. Mothers I look up to and admire so much for the beautiful journey they have so openly walked. 

So I made a shift. And my fears turned into a fight. 

• The fight for Jaxlee’s development and an independent future. 
• The fight to invest in myself as an entrepreneur (also a woman and a mom). 
• The fight to hold onto my marriage and the dreams we’ve always had for a big family. 

I put my foot down and declared I was not going to let a diagnosis limit the life I had always dreamed of living. 

In that same breath, I don’t want to sugar coat it or downplay our struggles. 

Here I am, about to deliver my third baby. 

I am feeling overwhelmed with the thought of caring for three kids: a 6-year-old who has special needs and requires a lot of care from me, a strong-willed 2-year-old in full potty training mode, and a newborn. And that’s just on the parenting front.

I’m also running a business and married to a fireman. Ya, it’s a lot. 

Many days (recently especially) I feel like I’m running ragged. Between the poop explosions on the carpet, the insurance calls & follow up games, constantly advocating for Jaxlee’s education and accessibility, and making all my business dreams and ideas a reality– it can feel like too much.

Or, it can look like this:

The beautiful life I would be missing out on if I hadn’t kept going. If I didn’t decide to go for it and figure it out along the way, if I had been paralyzed in fear by the “what ifs”, I would be missing out on the fullness of life we always dreamed of. 

Sure, our extracurricular activities might be dictated by a therapy schedule, and our family unit runs a little differently than the majority of our friends (fire families can relate), but we are doing this thing and we have found there to be a lot of joy in the simple moments. 

I say all this to first, be real. None of this is easy and I never want this space to give off the impression that it’s all about Jaxlee improving and Braedy being cute and my business booming without me trying.

Nope, it all takes a LOT of trying. On purpose.

We made a choice six years ago in how we were going to raise Jaxlee, and how we were going to operate as a family. Six years later, we make that choice– every day.

Every day we choose to accept the challenges and grow from them. Every day we choose to see the over-the-top schedule and take it one step at a time.

Whether you’re a special needs parent or not, a fire family or not, you’ve got your own battles and areas of loss. You’re not alone. Life in its fullest capacity is worth fighting for– especially when it’s hard.