On Sunday, my niece, Lola, was blessed. It was so fun for all our family to be together, and she is a gorgeous little girl that I am excited to get to know. But my eyes kept drifting to the family a few rows ahead of ours in the chapel with a young child with Downs Syndrome.
My cousin recently found out that the little girl she is carrying has Downs Syndrome. My thoughts keep turning to her and her family over and over in a way I don't think they ever would have before my Connor was diagnosed with his disorder. There is something that bonds us all together--all of us moms who have to deal with the pain of watching our children struggle with more than it seems they should have to bear, and with the painful knowledge of the struggles they will face in their future.
In two weeks it will be one year since we received Connor's diagnosis. In that one year, I can't say my day-to-day life has really changed that much. C still gets his same OT and PT as he was then, and he is just as happy as always. But I know I have changed.
When he was first diagnosed, I cried every day. I couldn't sleep with all the thoughts and worries and anxiety. Some days I wanted to hold him so tight, and some days it was hard to just see him and be reminded over and over of this new knowledge of his SMA. Little thoughts would pop into my head for a millisecond, that maybe I didn't get enough of some vitamin, or maybe something hit my belly really hard while I was pregnant...but then I would remind myself that this was genetic, and there was nothing I could have done. I cried after every new doctor's visit and physical therapy appointment, because it was so hard to go through the story of how we found out over and over again and rehash those initial feelings only to end the appointment being told all the things my son couldn't or wouldn't do in their particular area of expertise.
At this, one of the most difficult times of my life, one of the very greatest blessings I had came from perfect strangers. I started to meet moms and dads from all over the country whose children also had SMA. From the very first phone call or email, each and every one was willing to pour our their hearts to us with love and reassurance that they too felt just what I was feeling, and yes it does get a little better, and these are the things you might face, but these are some great resources that can help you. One mom gave me names of several families in our region of the country, and now we've met many of them. Another mom had just gotten her son's diagnosis a month before we did, and emailed with me during the hardest part, just as a different mom had done/was doing for her. I think Connor has six different blankets, most from people I have never personally met, sent to us to show their love and support when they heard about him.
And now, I still cry (like right now) about the diagnosis, and when C tells me he wants to stand up or gets frustrated when his body just won't move like it should. But I know now that if I did the last year, I can do this too. I know we have so many family and friends who love us and support us. And I know I have a huge network of people out there I have never met who know exactly what I'm going through and will do anything to help me.
So that is what I wish for my cousin...that she will know there are so many of us out here who love and support her, and that she will find those strangers but soon-to-be friends who know just what she is going through to help her along the way.