May 30, 2013 SUMMER IS HERE!!!

May 30, 2013

It's a BEAUTIFUL day here in Sandy Hook, CT .  Seriously, the sun is shining and its supposed to be summer time warm today.  Hard to believe that June is around the corner.  May has been a whirlwind of concerts, plays, events, stressful things, sickness, broken washing machine, more concerts, Sarah getting her license, and more.   Daniel, in his quiet life, watches it all smiling from his wheelchair.

I am so very proud of my children.  Sarah has just excelled over the years and followed her heart.  Now she is getting ready to go off to college in August.  Unreal in so many ways.   Thomas is my little sweet big guy.  Taught himself how to play Trombone this month.  And can't wait for football.  I have to find something to do for the summer.

I still have not been able to get Daniel anywhere that he could swim, although I know how much he would love that!!

Fun with paint at school!!

Water time!!

He's been sick with an upper respiratory infection that created alot of congestion.   Off to the ER we went on Monday and the x ray did not show pneumonia!!!  Thank you GOD.  But he's pretty sick, even today not looking too well.   But his resilience never ceases to amaze me.  I honestly never know what to expect with this kid.

I am sitting here in my office writing.  My office that is also my bedroom because John exiles me in the middle of the night due to my snoring.  I have to remember to call the ENT to look at my sinuses.  I never have time for me.   Anyhow, just sitting here thinking about how many things kids are doing in the Spring, whether its sports, theatre, dance, or whatever.  Graduations every where.  Proms, and weddings and life changing events for families all around.

And then, there is my Daniel.  He is my buddy.  I adore spending time with him, and it is nice that he clearly likes his one on one time with Mom.  I just wish for once, there was some special event. Some special exciting new thing for Daniel.   So I have been praying that somehow we can figure out how to get a dog for Daniel.  I can't afford to buy a puppy these. days.   But a friend of mine is helping me reach out on Daniel's behalf to possibly acquire a dog for him.  That would be a big event!!

All I can say is, please be grateful for the gifts that your children have.  Don't be sad that they are growing up and becoming independent. It's what is natural and part of life's process.  Moving on and carrying forward to the next moments of life.  Time doesn't ever stop.  I have to remind myself to be grateful for the positive and wonderful family that I have.  Well, children anyhow.  But even with our dysfunction somehow they manage to be smart, resourceful, talented, and loving kids.

It's May 30th.  The sounds of birds and lawn mowers.  And in here, the sounds of nebulizer, vest treatments, oxygen machine humming and feeding pump whirring and beeping.  I don't like congestion.  Too many scary variables there.

Enough for now.  Praying for Daniel to get a dog somehow.  Praying for our family and that financially things will get better. Praying that I will finally pass my P and C exam. Praying that God will touch our hearts and heal the things that harden our hearts.  I am grateful.  Very grateful.

Peace out from Julie, Mom to Daniel, (bi-lateral diffuse Polymicrogyria secondary to CMV infection in utero. Non verbal, feeding tube fed, wheelchair, seizures, respiratory problems, othopedic problems, severe gastrointestinal reflux.)