Monday, March 19, 2012

Wake Up and Sing

Well, today was rather uneventful for miss Evelyn. She is still struggling with pancreatitis; which can be pretty painful, so she slept a lot today. Her trach healing and breathing are still going excellently, and we will begin some 'heated trach collar trials' tomorrow - which means that she will spend some time off of cpap, breathing completely and totally independently. It is really a tiny step up from what she's already been doing, but is the next and final step towards 'wirelessness'. If her pancreatic enzymes still look wonky tomorrow then they will do a CT or MRI to get a good look at her pancreas. Due to a lot of air (gas) in her intestines, the ultrasound tech couldn't see her pancreas at all today.

Aside from a Daniel and Kim - led trach change, and more training for us, the only other things of note today were visitors. We continue to have the opportunity to visit with so many wonderful people, and today was no exception. This morning I had a really nice visit with a woman from church, and this afternoon Evelyn had a visit from Memri and Jacque from the Center for the Visually Impaired's BEGIN program.

Ms. Jacque was Evelyn's first vision therapist; she is also a musician, artist, professor at Morehouse, and is THE baby whisperer. Memri is a family counselor, cheerleader, motivator, and has the best dry wit in the south. These two women are both remarkable - when a baby is diagnosed with a vision impairment, and is fortunate enough to be referred to CVI, Memri and Jacque and the staff of the BEGIN program enfold that baby, and family, with love and hope. From one on one vision therapy, counseling for families, and Wake Up and Sing (the most wonderful music group ever) the services they provide are immeasurable - yet magically free of charge. Today Ms. Jacque brought 'little David' (her traveling guitar) and sang some songs for Evelyn, and Memri reminded Evelyn of just how wonderful she is, and how loved. There is a very rich peace and joy that you can't help but feel when you're around these two ladies, and in fact it became a 'must do' every Thursday for Evs and I to come to CVI for Wake Up and Sing - sometimes more for me than for Evelyn.

Having a connection to the Center for the Visually Impaired early in Evelyn's life was so valuable for our family. We met and made some very good friends, learned so many great skills for working and living with Evelyn, and most importantly - we learned that it was okay to be happy. For a while after receiving a tough diagnosis it seems like a betrayal to think about the mundane parts of life - after all, your child has *seizures* or *is developmentally delayed* or *is medically fragile* - and since managing all of that can easily consume your life, you start to think that that is all your life should be about. The simple act of coming to CVI and singing with our baby, talking to other parents and developing relationships reminded us that our lives should revolve around God, not Aicardi Syndrome. It was a place where everyone was dealing with the same kind of 'stuff', so if so-and-so got a haircut, maybe it was okay to think about things like haircuts and toenail polish and (in Daniel's case) GT football again.

I guess what I'm saying is that BEGIN is a very special place, and Jacque and Memri have something very special within them. If you know anyone of any age who is visually impaired, please tell them about CVI - they service people ranging from 0-100 years old (and older!). If you feel so inclined, consider making a donation of money or time; it is a very worthy cause.


Kristin Boatner said...

I enjoyed your post today! I miss Wake Up ans Sing and those ladies a lot! I'm working on Thursdays now so I can't visit. I was able to visit a couple times after Regan passed. I miss seeing you and Ev too. Hugs to you both.
Kristin Boatner