In the quiet moments when all I have is my thoughts, I think of Avery as just my son. My perfect boy. Nothing in this world can ever measure up to his grace, smile, and courageous spirit.
However, there are days when those thoughts are over shadowed by others. In those moments, I wish we were never told that he has Down syndrome. Its the thief that robs me of accepting his tantrums as just that- a tantrum. A typical toddler expressing his discontent with whatever decision I have made for him. Instead I am quick to assume the worst. Waiting for the other shoe to drop. I so badly want to celebrate his unique spirit and see him for who he really is. I want to take in all that the “terrible two’s and three’s” have to offer without constantly thinking there is something worse occurring.
I have silently struggled with Avery’s abilities over the course of this year. I am not proud of it, but it’s real talk. For me, I have had a hard time knowing where his Down syndrome ends and where he begins. It hurts to say that out loud.
Oh, hello mommy guilt! So nice to see you again….
Then it all became so clear.
I had inadvertently placed him in a box, given him a label, and shuffled him among the others. I was in such a hurry to “accept” his diagnosis that I failed to realize that I have this perfect little boy…
How could I not have done that though? I jumped into the world of Down syndrome head first and it was all I knew for months on end. I didn’t see how it was clouding my relationship and ability to really connect with my son.
At first, it was helpful for me to be immersed in all things Down syndrome related. It made sense, and it made me feel safe to be “prepared.” I tried to educate myself as much as possible and learn all I could about what I could expect from Avery. I subscribed to many blogs and connected with other parents through social media, and was fully engaged in each of his therapies.
Looking back now, I realize that I was spending more time learning about his diagnosis than I was learning about my own son.
My journey is ever changing, and what worked for me once will not always look the same. While I still want to remain educated and involved, I am learning that my happy medium exists in the space where I can see Avery for all that he is, but still keep my bits of knowledge and resources in my back pocket for when I need them.
Its time to reconnect and allow my eyes and heart to see my son for all that he is.
This year, my resolution for 2015 is to allow my sons spirit to shine, and to put his diagnosis on the back burner.
It will always exist, but he is so much more.