Tuesday, May 25, 2010

DS Support Group

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.


Glenn and Melanie said...

Ahhh Tiffany, I always love reading your posts - and you will be so happy over the years that you took time to do them. I am somtimes amazed that you put things on here that I didn't know about - even though we talk almost daily. I must admit - this one brought a few tears. Just as your heart aches for Averi - my heart aches for you and for your family. I wish it didn't have to be hard. I love you!

Vicki said...

Oh you've brought me to tears. I've always thought you were amazing. I guess the Lord knows you, your family and Averi are amazing. You give me the strenght to keep going with my much smaller problems. Thanks for your example.
BTW, the blog entry on the zoo, I loved reading it on both blogs--each one had great info about the day! What fun!!

Lauren in GA said...

Tiffany, I started crying when I read this. I am sorry it is so hard. You really are amazing and I am truly in awe of you.

Mark said...


My name is Mark and our son has Laryngeal cleft type I.

To obtain more insight in this rare anomaly we realised an online platform for parents by parents with children who have laryngeal cleft, where they can share their stories and exchanges experiences with eachtother.

I'd like you to join as well and share your story.
You can register for free via this link: http://laryngeal-cleft-support-group.ning.com

If you have any questions please feel free to contact me at laryngealcleft@gmail.com

Have a great day!