Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Thursday, February 3, 2011

My courageous baby has breathed for the last 48 hours on his own, without the help of a ventilator.  For the first time in his life.  Yep, we got orders for a TRIAL DC of the ventilator at night.  You'd think I'd be happy, but I'm a nervous wreck.  Pacing, flaky, can't sleep.  Can't quite stay awake.  Checking sats, checking breathrate, checking for work of breathing. Checking checking.

How hard it is at times to accept God's will.  The morning I was told Joel might not live through the day was easy in that sense.  I had absolutely no control over what was in front of me.  I could pray for the intensivists.  I could pray for nurses.  I could pray for my son, but I knew that God wasn't short on change.  If His will was to heal my son, save my son, it would be.  I could rest in that.

And here we are, 9 months later, so far from the danger of that day.  But it doesn't matter, I still need to trust in God's will for Joel.  I need to know in my heart, minute by minute, that if Joel doesn't get off the ventilator at night the first time, it's going to be ok.  I need comfort today.


  1. This is such fantastic news. But I KNOW how crazed you must feel trying to monitor him through it. 48 hours!! On. His. Own. Strong work Joel!!!! Hang in there mama! Praying you have peace as he continues these big steps towards being vent FREE!! <3 you tons!

  2. I just wanted to tell you that I am proud of you! I know that it takes a strong and determined person to handle everything that you and your family are going through. I can somewhat relate. The boy that I take care of, has a lot of the same medical needs as Joel, except he has only had a trach for about 3 years. I have only been a care provider for him since he got his trach. But, ever since he was a baby, his adoptive mom has spent countless hours and many sleepless nights taking care of him and sometimes literally keeping him alive. He is now 12 years old. I don't know all that you are going through, but I do know that it can be difficult and even scary at times. Keep your faith in God, he will sustain you and your family.