My bad day

Today is Sunday December 11, 2011.  I'm tired from lugging up Christmas decorations from the basement.  My heart isn't into it. And my legs feel heavy. This year is not feeling like holiday cheer for me...not yet anyhow. Today as we were about to take him out for a walk...he projectile vomitted. Which is a huge problem, because he had a surgical procedure to prevent this from happening. Why? Because he aspirates when this happens. And I found myself right back in "Daniel factor" mode.... call the doctor, get the zofran, pedialyte, congestion? Fever?    As it is, I have to take him for a spinal xray this week for the scoliosis.  I feel like I am doing a good job with him....but there is always more you wish you could be doing.  Sarah and Thomas have wish lists...  and so most people, for that matter....but Daniel???   Daniel can't tell me what he wishes for.  He can't tell me when he feels nauseaus or if something is hurting him.  Day after day after day....he is 14 years old....and I love him so much... but today I'm ....well...just kind of blank and sad.  I know I have to pray. But sometimes...I just sit in the darkness.  and think.   We put the tree into the stand. Put the candles in the windows.  Even set up my Christmas village.  But I don't feel a relief from my never ending gut feeling of fear...  fear that something else is going to go wrong.  Fear about the financial pressures here.  Fear that I am not healthy and will get sick.  I guess its natural...when you live with a medically fragile son.  And I guess I just talked myself into every reason why I SHOULD be praying, right?


"Lord, please, grant me with the ability to stay motivated, stay positive, and continue with resilience to fight this fight I am in..  Thank you for the many many blessings you have given us.  Please care for the children and their families who are burdened so heavily just for the sake of wanting to live.   Thank you for loving me, and for giving your precious son to us...  Please God...help me to remember that Jesus is the best gift.  And in times that are so tight...he is our light and salvation...  thank you.  I am so humbled and grateful."


With love Julie

Last Year's Tree...    I have work to do still....

Now...back to Daniel's side I go.   Maybe tomorrow I'll put lights on the tree.  Maybe tomorrow I'll be in the hospital praying for healing.  Who knows.  who knows.