Once a month we attend a DS New Parent Support Group. It is wonderful. We have become friends with several of the other parents. It’s nice having friends who can actually empathize with what you are going through and to be able to follow the progress of everyone’s kids.
Although I’d be totally happy just sitting and visiting, each meeting is accompanied by a guest speaker who specializes in an area pertinent to people with DS. Some nights I just wait for it to be over so I can start talking to the other families but tonight the guest was an ENT and we were ready to hear what he had to say.
It was very informative and he answered several questions that we had about Averi’s unilateral hearing, her tracheomalacia, and her laryngeal cleft (he’d only seen one in his 18 years of practice, proof of how uncommon they are).
As we kept asking more questions, I realized that several of the other parents were giving us that “are you serious” look. One mom even asked us how we look so sane with so much going on. For the first time I stopped, looked around the room, and realized that we have one of the most medically complicated children in the group.
I knew that the other kids were progressing faster than Averi (which trust me it’s very hard to accept that your child is behind the children who are already behind) but this was the first time I recognized just how much we really do have working against us. We spend so much time trying to learn how to eat that physical progress has been put on the back burner.
I actually felt sorry, not that she is here because I love her to pieces, but that life is so hard for her and for our family. I want the best for my children and even though I am literally going crazy trying to keep up with all her appointments I just wish there was something more I could do.
I left the meeting knowing that we will be back next month but not knowing if I want to go because it will just remind how much harder we are working to make less progress than the other kids.
I tell myself everyday – it doesn’t matter when she learns it, it just matters that she does. It still doesn’t keep my heart from aching.