Friday, September 4, 2015

The Day I Thought My Heart Would Explode With Happiness

I have some really, really awesome news.



That's right - my precious-almost two year old-stubborn and hardheaded toddler took his first steps last Friday while I was out of town at a funeral.

Cue ugly tears because ugly tears are exactly what was streaming down my face when I saw this video of Colt at daycare. Be still my heart little boy!

I think all momma's struggle at some point with comparing their child to other children around them. But, it's an even bigger struggle when you are the parent of a developmentally delayed child. Colton has always been behind in comparison to neurotypical children his age, but the older he gets, the more apparent and obvious those differences become. Previously, I still made the excuse that he was just "a little behind." But, there's no denying the fact that my baby is different. 

After his autism and chromosome disorder diagnosis, we attempted to bombard ourselves with research. We tried to cram every little bit of knowledge in our brains. Anything that had to do with autism, 1q21.1 microdeletion, sensory processing disorder, and apraxia of speech were on the forefront of everything we did. We knew Colt's two biggest struggles would be motor and speech. And that couldn't have been more spot on. We finally feel like we've made some headway in the motor department and although that is a load lifted from my shoulders, it just reminds me that we have such a long way to go in the speech department. I've been so focused on PT, strengthening his weak ankles, and walking practice that I have completely put speech on the back burner. Now that we have somewhat conquered one beast, I know I need to be better and more proactive in finding quality speech therapy for him. 

Although this little boy can't formally say words - he's never been short on something to say. He babbles ALL the time! It's so very precious but I really, really wish I knew what he was saying. The lack of communication has been the major source of meltdowns lately. Not being able to communicate with each other leaves us both frustrated, upset, and angry. 

It's really hard to believe that my handsome little baby is about to turn TWO YEARS OLD. Seriously, where has the time gone? It feels like it was just yesterday that I was feeling his little baby flutters and kicks in my belly and here he is, becoming such a big boy! 

Although I am SO happy to be seeing TWO - because let's be honest, the infant and baby stage was far from my favorite. But, the older he gets, the more mommy anxiety I get. 

Where will he fall on the spectrum? 
Will he be non-verbal forever? 
Will I ever hear him say "mommy" or "I love you?" 
Will he ever live independently? 
Will he be in diapers forever? 
Will he ever go to college?
Get married? 
Have children? 
What will happen once Vince and I are gone?
Will I ever be able to monetarily afford to give him the best possible life - along with all the help and therapy he deserves?

All of these questions and more float through my head on a daily basis at the speed of light. I try and keep a positive attitude, live in the moment, and be thankful for all the little successes. I tell myself that things could be much, much worse. And while I understand that and realize that, it's still hard to be upbeat when other kids are making laps around us in terms of development. While I bask in all the things he does and all the progress he makes, I still constantly question why and what I did to deserve autism in our life. 

There are more days than I care to admit that I grieve for the child I had envisioned Colton being when I first became a mother. I grieve for the dream I had for his life. I grieve for the difficult road we have ahead of us. I grieve for the "normalcy" of parenthood. I grieve the things Colton will miss out on because of the dreaded "A" word. I grieve the fact that our life constantly revolves around therapy, specialists, and intervention. I grieve the fact that all of those things are monetarily bleeding us dry. I grieve the fact that I can't give Colton the care and attention he deserves because I'm forced to work full time. I grieve the fact that I will never end up having the big family I wanted because the chance of having another child on the spectrum and with the same chromosome disorder is just too big of a chance to take. I grieve the fact that Colton will never have a sibling and have the type of relationship I have with my brothers. I grieve, selfishly, for the fact that I may have to take care of him for the rest of my life and never feel that "empty nest" feeling later in life. I grieve the fact that anxiety now consumes my life and that going out in public puts me into near panic attacks on a daily basis.

Despite those feelings of grief, I realize that just being able to make it this far on our journey is reason enough for celebration. And celebrate we will little boy, celebrate we will!