I love and dislike going to our DS Support Group every month. Before you get me wrong, I really love going. I love the people there and the wonderful friendships we have made. I love getting to see the other kiddos play with each other and noticing how much they've changed in the last month. Last night I went (Dan stayed with Averi so that I could go) even though the speaker was from a different county then we are, just because I wanted to be there with everybody.
I dislike going because it seems to be the only place that gets me chocked me up when I talk about Averi. At the beginning of each meeting we go around the room and say what our child is up to. I always divert to Dan so that I don't have to try to get through it, but Dan wasn't there tonight. It's not that I started bawling or anything, but I had to work really hard not to. These are the people that I feel best understand what we are going through so my emotions just run high.
At the same time, it's always bitter sweet to see how well all the other kiddos are doing. I am truly excited for them and proud of the progress they are making. Seeing them, however, reminds me just how far behind Averi really is. I often feel like she is the outlier. Living in our little hole at the hospital seems to make me forget that there is a real world out there where kids actually progress and develop at a 'normal' pace.
It's even harder when typical kids, who are quite a bit younger than Averi, do things that she either can't do or has just learned to do. Again, I'm honestly excited for them but a small part of me feels like they are rubbing it in my face.
Recently a friend announced that their 1 year old could do something that Averi has spent months mastering. My initial response (in my mind of course) was, "Why can't you just let me enjoy her accomplishment without outdoing it?" It's hard accepting that your child will always be delayed, but it's even harder to witness it. I just want the very best for my kids.
I am so grateful for our support group and the knowledge that I'm not the only person who experiences these emotions. I am also grateful for the opportunity to see them each month. I seriously love going, even if it is a bit of an emotional ride. They celebrate all the small things that Averi is doing and help me enjoy the progress she is making, no matter how slow it is.
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A journey through life with Down Syndrome
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Places That Care About Me
- Allergy Clinic
- Audiology
- Cardiology
- Down Syndrome Association of Central Ohio
- Down Syndrome Clinic
- Ear, Nose, and Throat
- Early Intervention
- Gastrointestinal
- Hearing Clinic
- Hematology/Oncology
- Neonatology Clinic
- Nutritionist
- Occupational Therapy
- Pediatrician
- Regional Infant Hearing
- Surgery Clinic (G-Tube)
3 comments:
Our little Averi is not an outlier - she is an outinner - she has her own inner circle of special talents - the best and biggest is her smile. Love ya.
I know exactly what you mean. Because we spend so much time in the hospital because of the whole leukemia thing Emily's gross motor skills have really started to lag behind even kids with DS. I think she just doesn't have the energy a lot of times to put the effort into getting her body to move. I can't wait till Averi and Emily kick leukemia in the butt and can move on with their development!
I love seeing you just as much. I am so very proud of everything Averi does. It breaks my heart to bits knowing that you guys have to go through so much and I would do anything to magically take it all away. Before you know it, she will be out crawling her man. Love the video of her getting out of sit. Love the smile on her face. Wish we could come and visit, but I honestly can't walk but two feet. I will call you tomorrow.
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