Over a year since my daughter was recommended for autism spectrum disorder testing…
Over a year…
And still nothing…
Our journey has been a lifetime in the making. My daughter’s lifetime specifically. We have been trying to receive an accurate diagnosis for her since she was five years old.
We have received brief moments of hope but mostly it’s been long periods of silence.
We got the recommendation. We went through the loads of paperwork before we could even be considered for an appointment. We’ve jumped through the hoops and ended up empty-handed so far.
I am ever thankful to God that we weren’t a family who was naïve enough to place all of our eggs in the basket of the medical community. If we had, our baskets would be empty.
Instead our daughter was born into a family doesn’t blindly follow. She was born into a family who will make their own path if the one available doesn’t fit. She was born into a family that knows how to sacrifice and is willing to do that for the well-being of family members. She was born into a family of fighters.
With being stated, I have had a lot of emotions as this “anniversary” neared and past. I am proud of my daughter for not giving up despite how difficult things can get sometimes. I am glad that I had the foresight not to expect anything. I’m happy that I’ve spent the last few years (specifically the past year) studying like I was preparing for a college exam learning everything I can myself and not wasting time waiting on help from others (which still hasn’t come).
I find myself feeling a twinge of pain when I see others getting the help that is so deserved for their children while mine gets ignored. I get tired of being a fighter sometimes. I feel sad when she struggles more than usual and I can’t do anything else to help. I feel angry that the system continues to fail us. I feel exhausted on the bad days. I feel triumphant on the good days! I feel so honored yet humbled when I am told that God chose me for this task. I do not feel worthy.
My opening of this post included the words, “one year…and still nothing…” That may be what the medical community has offered so far. But our blessings do not depend on the medical community.
It’s been one year of intense study for me. It’s been one year of teaching my hubby what I learn. It’s been one year of applying what I’ve learned with my daughter. It’s been one year of seeing some positive results from what I’ve learned. It’s been one year of baby steps (but any step that takes us forward is more than we had the day before). It’s been a year of bonding (because everything I learn draws me closer to my daughter). It’s been a year of acceptance knowing that I can only change what I have the ability to change.
And probably most rewarding, it’s been a year of “big hugs” and “I love yous!” The unemotional one-sided weak-armed side hugs have been replaced with full-on hugs (bear hugs, if she’s in the right mood). She can see people reaching out to her and she is responding. She can feel safe. She can feel understood. She can feel loved…not just loved but loved for who she really is. There is a connection there that I have longed for so long! I have to say…It’s been a pretty good year! :)
We went from this family photo, where she is visibly uncomfortable...
To this one, where she is fully involved.
Love those BIG Hugs!!
