A letter to Brody

Dear Brody-

For the longest time people would say "thank gd they won't remember any of this..." And here we are at 3 1/2 years old still going through it and now I fear you might. You have overcome so many miraculous obstacles because you are so determined, proud and smart. There has been so much in your life that has been out of our control but I always fought those forces to find the answers and bring you back. For the first year of your life you continuously, time after time came very close to not making it but mommy never left your side and we were vigilant, creative in our treatment recommendations and aggressive advocates for your best interests.

We have come so far and you have developed into such a funny, little voiced but big personality kinda kid. We thought we were at the end of the road and putting all of this behind us by getting your gtube out and scheduling your trial to get your trach out but we should know by now go expect the unexpected with you. Nothing seems to come easy to those who deserve it most and you definitely deserve to catch a break already. A bump in the road sounds so cliche and for the kid having yet another surgery, having a MRSA infection rip apart your surgical site, get his fresh incision barbarically torn open without any anesthesia let alone pain meds and gtube shoved back in, a whole bunch of traumatic stuff in the middle, and now another more invasive surgery-the saying is more like a crater on a highway.

Living your life in and out of hospital after hospital, rehab facilities and being poked and prodded as long as you have been alive has not been easy on any of us. I just want to give you the normal life you and your brother deserve and to put this all in the past. I don't do much praying anymore (but can always use he help from those who are strong believers) but my wish for you today is that tomorrow goes smoothly and your wound will finally heal, and you can have that belly we've been talking about for weeks now... Just like your brothers. My dreams and prayers for you are constantly changing and I hope that by next week our focus is on our next big accomplishment of decannulation of your trach and this is old news.

To those of you with sick children (and unfortunately I know too many), only you can truly read between the lines of my entries at everything else that goes into these non-stop procedures and hospital stays that torment our babies physically and emotionally scar and rip our hearts out.

Brody, I really believe you are destined for big, huge, pay it forward kind of things in your life. I think that at your very young age you and your brother know very well how much you are loved and how hard your mommy and daddy will fight for you. When you hug it's hard and with solace and gratitude. We have always said you have the eyes of an old soul and even though you are unable to speak the words I know you get it all.

You guys are my life and I love you so so much. Wear each battle we have been though with pride because at 3 you are tougher than anyone else I have ever met.