Lately I have been having trouble breathing and its not about asthma. During our inter stage period, I wrote about the space between fear and faith. I have often heard people say “where there is fear, there is no faith- where there is faith there is no fear.” I disagree, at least for now, there is a huge gaping space between the two and that’s where we live. We were given this world- the world of ICUs and crash carts, the world of people staring at us as we tube feed our child, the world of transplants and surgery on little bitty organs. A world no one should have to see- and we are told to exist in this world and have hope that things will eventually get better- but there is no way out. Sometimes this feels like hell and sometimes I feel like we are so lucky to have been given this world because it heightens our awareness of life, our awareness of love, and forces us to slow way down. Living with the unknown, the impending maybe of a crisis is really hard; so hard it makes me breathless….
And then I look at him- there he is- happy, funny, teething, standing, laughing, snuggling Paul. Paul who loves big kids and the Disney Chanel. Paul who loves to read and bang things around and will not sleep until his Daddy gets home to rock him and I realize that I would never trade him for anything. Nothing in this world can prepare you for anticipatory grief or actual grief- nothing can prepare you for what it means to give anything and everything to something that might break, or might not. Nothing can prepare you for feeling so breathless and feeling so incredible all at the same time. I don’t write this to depress you or make you feel sorry for us….I guess I just feel like it helps to let it out and when and if Paul gets to a point where he wants to read this he will know what we were feeling and how truly loved he is.
As Halloween approaches, I want to issue a spooky suggestion- let them have more candy, hug them SO TIGHT, take in every single moment of the costumes and the pumpkins and the parties. Take it all in and remember we are given one life and with children there will never be another moment like the one you are in right now and that’s something so precious.
Last year, I carved the pumpkin in the picture below when I was pregnant with Paul. I was so sad, so scared so worried about what was about to happen in our lives in the coming months. Halloween night our best heart buddy friend Jude came over to our house for the first time dressed as Cat in the Hat and we played with our dog and some little trains we had in Paul’s room (Jude still loves Ruby and the trains) we began a beautiful friendship with a family that also lives in this world and was willing to walk us through it. Last year, I did not know if Paul would be here this year- I did not know if or how we would celebrate Halloween 2012. And now we are picking out costumes, planning our trick or treat route, and trying desperately to teach him to say “boo”.
Thanks for following our journey and for listening. Sometimes I feel lonely, but I know that I am not alone because of you- our family, friends, acquaintances fellow heart parents, and people who just follow Paul’s journey, so thank you. Ok, I think I can breathe now- time to play and laugh with my sweetest boy….