Sunday, May 11

Mom’s day

I’m not sure how Mother’s day became a national observance.  I guess I could Google it, but it really doesn’t matter.  What is important is the fact that I was blessed to spend today with Jim and both of our children.  As Mom’s we nurture, cuddle, teach, feed, and follow a care routine for our children that is very intensive at first and then morphs into a unique path for each child. Much of life and what happens to our children is out of our hands.  We do the best we can each day and then get up and do it all over the next day, all out of love.

Today we celebrated all being together and it was wonderful.  Lindsay and I both received many hugs from Jackie that have more meaning now than ever before.  Jackie continues to eat a little more at each meal and is starting to make more sounds from his speaking valve. I am hoping these noises lead to words.

Communication is still a struggle.  Jackie is getting better at pointing out pain areas. He was also pointing at one corner of the room but we could not figure out what he wanted.  We gave him paper and he roughly spelled out water. He had been pointing at two water bottles sitting beside his bed that are used for trach/O2 use. Even though water is too thin of a liquid, he can eat ice chips.  He also wrote –  Wheres my pudding.  Granted, the penmanship is not good, but this is a great communication break through.  Florent thought maybe Jackie would like to type out words on a keyboard.  We had tried this once before and  again it seemed a little too overwhelming for Jackie.

We are looking forward to talking with our docs this morning to get a feel for when we may be able to head to Magee.

I hope your day had some memorable moments.  Keep giving the love, it will come back full circle in ways and forms you may never thought possible.

Thank you for your positive thoughts and prayers.