Saturday, December 15, 2012

Hope in a place and time of tragedy

We knew going into this that things have to be worse before they can be better and that Max would look sicker and sadder before he would look healed.  We knew there would be long days and the moments when you think 'what were we thinking?!'  Still, you know that and it still is hard living it.  We took Max to the OR smiling on Monday and brought him back on a breathing tube sedated and spend the next 72 hours sitting by his side when he LOOKED so sick.  He wasn't, he was healing.  But lying there not interacting with the ventilator humming it would be so easy to forget that this is a step of hope, not a step back.  My spirits would get heavy as I missed Addie terribly and I missed seeing Max's smile and kept having a hard time remembering THIS IS GOOD when it did not look good. 

I never found the NICU to be depressing the way I find the PICU to be depressing.  In the NICU the babies are tiny and early and the parents are scared but most will get better, they just need a medical womb and some attention to get them there.  There are some very sad cases but a lot of new parents kangaroo caring their little ones, a lot of smiles through the tears.  I felt like it was a hopeful place, babies getting better and going home with normal full lives ahead.  Emotional, yes but tragic, only rarely.  But the PICU is different.  When Addie was admitted to the PICU last December, there was a night when we couldn't leave the room for hours because 4 children who had been shot by their father were being rushed in.  There are drownings, there are abuse cases.  Kids fighting against RSV for their lives.  Babies, toddlers, teenagers on ventilators who just hours before would have been running around.  When I am in the PICU, I get sad for the children and the families surrounding us.  I am always aware of how much tragedy there is.

And then yesterday, of course, we were all made ever more aware of how much senseless tragedy there is in the world with the shooting in CT.  As a mom and as a teacher, I was shocked and devastated for those families and the school.  I wished I could have seen Addie to hold her extra close.  I couldn't even think too long about how awful it must be for them because I would not have been able to handle thinking through that grief while sitting next to Max still with a breathing tube, getting better but still facing his fair share of hurdles.  I prayed for everyone involved for a peace that I certainly cannot understand and for love and support for them during this time.

I also looked at my circumstances differently.  I looked at sweet Max on his ventilator and remembered that he is not here in the PICU because of a tragedy, he is here because of a gift his dad gave him.  He is not here because something suddenly threatened his life but rather because of a planned pathway to hope.  His breathing tube was allowing him to heal and get ready for a better life than ever before.  I realized that in this place where there is so much tragedy and on this day where there was so much tragedy, that sweet Max is sweet wonderful hope.  And we are blessed beyond words to be here, hard of a process of this is, on the pathway to a better life for Max.

I wouldn't be normal if I didn't admit that there are days when everything we have been through feels like tragedy to me.  When it feels awful and unfair.  The 8 months in the NICU, the 20+ surgeries, the close calls with Max styopping breathing at home, the brain injury and CP, the hearing loss.  I can lose my persepctive on days and feel that our family has experienced tragedy.  And then sometimes I just need to remember what tragedy really can look like and realize that my babies are alive and smiling.  They have overcome.  Ours is not a story of tragedy but of healing and hope. 

I spoke to the media director here one day this week who is arranging photo shoots and possibly the news to come cover Max and Addie's birthday party which we are quite excited about.  He kept saying 'this is a wonderful story of hope for Christmas time' and it was such a great reminder to me this week.  This year all four members of our family have had major surgery.  We got Max's CP diagnosis.  And we are leading up to Christmas with Max still having a ways to go to get out of the hospital and with my not having seen my Addie in a week.  It doesn't FEEL always like the heartwarming Christmas of my dreams.  But then I sometimes just have to look at it from another perspective and see what tremendous miracles have happened this year and what a wonderful place we are ending this year.  Sometimes I have to ignore the voice that reminds me all of all the things we still have to battle and deal with and just celebrate myself this hopeful beautiful story of two precious babes who beat the odds.  To embrace the story of hope in a time when there is a lot of tragedy. 

I pray today for all the families grieving, in CT and in hospitals around the county, and I thank God once again for saving my babies lives.

1 comment:

Tyler Miranda said...

Thank you for the update Stephanie. My wife and I haven't stopped thinking about little Max since his transplant and we are so glad he is doing well. What a strong boy you have!!