When Hope is All You Have

It feels like an eternity. Its been only 2 weeks since Mason was transferred from the ICU to the pedi rehab in NY. It has been 79 agonizing days since we last saw him walking, happy, climbing, playing and soaring to milestones no one ever deemed possible. Those are just numbers, I miss him. I don't ever have moments where I wish we could go back to that day and change something. Of course I wish we could erase the whole day. What I mean is I know we did everything we could. From the second we began bagging to the moment my hands lay on his chest and CPR began. We saved his life. He is alive. He got into that ambulance breathing with a weak pulse but alive and responsive. One day, maybe years down the road, I will allow myself to recognize how strong I am and for the strength that exploded from every inch of me that day. It feels like a bad dream. The strength that somehow comes through every day I wake up and continue on through grief. If I had to pick one word repeatedly said to us the first few days, weeks, right now it would be hope. We have hope. Have hope. There is always hope. Let's hope. Those echo in me and its aggravating and pleasant all at once. I suppose there is no way to really put into words all that has transpired these past few months...4 years... What I can't put into words I can show in pictures. The progress we hoped for has been slowly showing itself.
                                             Day 2 Post Respiratory induced Cardiac arrest, 
                                        shortly Before the seizures and neuro storming began.

Day 76 post arrest induced hypoxic brain injury. Two weeks since arriving from the ICU into 
the TBI Rehab Unit and we think the start of a smile has begun. We hope. 

I am often asked how do I do it? How am I functioning? There is no answer. It;s the same as me asking myself how have I held my childs lifeless body? How have I survived months and months of living in an ICU and 13 hour surgeries, countless surgeries,  traveling to hospitals not knowing what will happen in the OR every single time. How is it that I prepared a Turkey meatloaf from scratch tonight, kicked off a Thirty One party, fixed a washer bellow that had come loose, rushed one of the girls to get ear buds number 5 million, oh and start the day rushing 2 teenagers to school before coffee because the bus was legitimately MIA and 14 degrees out? All while knowing I will make the trip to the rehab tomorrow and try to hold on to all the hope in the world and remember it's only been 2 weeks of therapy. While passive, at least he is tolerating it. We were so blessed to have this past year of amazing progress, defying odds and watching him smile and run around like a toddler should, trach and all. We just hold on to hope. I hope tomorrow I see a little sparkle in his eye that says he knows I am there. 



  1. This is so difficult. A sick child is so hard as the worry never leaves. Sending you all the best.

    1. I call upon the eternal Present that is within and without us joining us together as one.This child needs help but needs it quietly, without expecting gratitude or rewards.. Let the healing power of your spirit run through your hand as you reach to touch another, but say nothing to the person you help. Learn to give invisible.

    2. Nothing to say? The above spiritual message comes from my heart.


Post a Comment