Life After A diagnosis

Back in May, I wrote a guest blog for  Inspired by Drive and now I want to share it with all of you! 

I have always felt like I matured at an early age. My mother was a single mother, we found my grandmother dead at age 4, OUR best friend. (that memory is still vivid as can be in my brain) and when my mother got married, I became the oldest of 4 in our home. This came with a lot more responsibility than any child should have because while my mom was  working 16 hour shifts to provide for our family, my EXstepfather would often take off. Leaving me in charge of my siblings more often than not. Doing homework, cooking, cleaning, driving them to school, & picking them up. These responsibilities, and experiences are things that I feel prepared me to be a special needs mother.. I had to grow up, and step up at a young age. 

I was 19 years old, so in love.. I remember so many details from the night we took that positive pregnancy test. The driving in silence... the most.  together - but silent. I was going to be a mother, at 20. 

Halfway through my pregnancy and committed to our future in parenthood, we were given devastating news in such a kind, and caring supportive way. But to this day I wish the specialist wouldn’t have sugar coated anything and given not only the best case scenario, but the worst as well. It would have been a little easier to not be blindsided by all that we were while I was labor. Our first diagnosis of CDH.

Austin was born in LA, right across from CHLA, so we were “prepared” for the worst case scenario. Are you ever really prepared? Good thing, because at 1 week old he was transferred there and at 2 weeks he was placed on a heart, lung bypass machine so he can take a break from fighting for his life.

At first I was numb, and I had a routine. Everyday I stopped at the chevron to get my coffee, and I drove my Mother in law’s bright blue pt cruiser. I stayed until about 2pm everyday so I could beat the traffic leaving LA. I didn’t really want to leave, but Austin was extremely sedated and usually asleep. I just sat by his bedside reading books for the most part because I didn’t get to hold him until he was 3 months old, and even then it was rare because of all the machines he was hooked up to. It just felt uncomfortable for the both of us. It was hard. So hard. And I was trying to get home to the relationship I was so desperately trying to hold on to because we were dealing with the current state of our son’s well being in two completely different ways. And this was just after diagnosis number one. Austin almost died at least two times that I am aware of. Do you know how much that does to a couple? Let alone a 19 & 20 year old!

We were not able to get a final diagnosis until he was 2 years old. I fought hard for those answers, because I knew he came home a completely different baby after the second hospital stay. A total of  4 months in the NICU (a majority of that, they called him the sickest baby in there) and 2 months after the whole was torn in his stomach in the PICU.  That diagnosis, of cerebral palsy, the answers we had been looking for since he came home...hit us like a ton of bricks. We were checked out from one another. I help tighter, while he pushed away (typical man lol)

We had to take a break. We needed space and we needed to weather our own storms. We had to mourn the loss of the Austin we might have had. I felt so alone, and deep in the darkest space for a while, but that break was so good for us. During that time I finally found myself again. I became confident in the future ahead. My future as the mother of a special needs child. I had finally accepted Austin’s diagnosis. There was a light in the darkness. And that’s where my advocacy journey began. Jonathan and I realized we were always going to be, better together.

He finally proposed after like 7 years, lol Followed shortly by a baby girl, Paisley Gray. The light was brighter then ever. Fast forward to now, and we have created such a meaningful life after our diagnosis. Austin has two little sisters and is so loved. He gets to ride horses every week for therapy, we are surrounded by an amazing community of fellow special needs parents, and all because I chose to believe in, and share our story. So I could heal myself, and show others they are not alone in their struggle.

I thought our life was over. As dramatic and cliche as it sounds, it had only just begun. We still have so much to look forward to and milestones to reach. I don’t know everything, but what I do know is I can’t change what happened. I can only look forward.

So if you are in a dark place after a diagnosis, keep you’re head up! I promise you, that there is a beautiful life ahead. A life full of perspective and supportive friends, women that understand your journey, and I found mine on Instagram! And if you want, another baby, have that next baby! Because there IS a life, after a diagnosis!