Little Wonders

Today was one of those days, filled with lots of things to do but not accomplishing much. The girls, Simon and I went to clinic, got blood draws, met Dave for mickey d’s in the car downtown and came home to put Simmy to bed and spend a much needed hour on our van, which I’m embarrassed to say was like driving a fast food restaurant/toy/book store with lots of dust on the dash and empty diet coke cans in the holders (trying to make up for lost time during abstaining for Lent). Felt good to get that done and the girls were an amazing help, I think the popsicle reward helped motivate them along. As I look back at the last 2 + weeks I feel the weight of the world lifting somewhat but also somewhat heavy. Its hard to explain the daily emotions or even minute emotions we have felt lately. We have had STRs drawn twice now that have told us simon is at 100% donor cells and fish labs (not totally sure) but these tell us we have 5% male cells looming which coinside with our stem cells vntrs of 94% donor and await antibody draws to tell us if we will have a problem with rejection from Simon of Marriana’s cells. We are so in the realm of thinking that this is our summer for Simon to be born, to live as a 20 month old boy should be able to and our setbacks always remind us that transplant or NEMO are not just an operation to be healed by time and be done with. Its always scary to think about the meds he is on and long term effects or the time it may take to get him off of them and have the result we long for. Today while at clinic I had the rare opportunity to speak with the “head” of stem cell. Dr. Kletzel who is a very empathetic man and one who you know wants the best for your child, why else would he do what he does, but is also Mr. Rose colored glasses and sometimes makes you crazy for his optimistic outlook when you feel so shitty, but today I found much comfort in talking with him and seeing him sit in a chair in front of me speaking to me like a friend, after all 20 months gives me that right, to think of all the stem cell doctors, nurses, nurse practitioners as friends or family right. Simon has some bad scaring on his legs and arm from the last skin flare up and I was offered a “home remedy” from Mexico from Dr. Kletzel and really it made it feel genuine. I cannot explain all the feelings that cross my mind daily. A lot of it is guilt, self doubt, fear, and hope. I wonder how life got this way, how my son was meant to suffer and how much we will rejoice at the time of complete healing. I also look at things like the moon tonight and think back to how much I used to love to take my telescope onto our deck and look up at the night skies and wonder…….and how much of that I have forgotton or lost or grown not to have the energy to care about. it’s a hard balance. Most days I sit and think in time our life will be as it was, daily work, school, activities and sibling fights that drive you crazy. Right now I wonder how all the families going through serious illness make it. How do they continue on. We have 3 immediate family members in desperate need of help right now and the sad thing is none of us have well enough situations to be there for anyone else. Its just not right. After thinking about how this all came to be it is my destiny to get the word out to healthcare providers through pamphlets or something about NEMO and signs of carriers that noone even suspects is a problem so that other families, perhaps can make the choice if they can bear the pain and all that goes into trying to cure this. I could not imagine life without Simon. The girls and him love each other so much. They play and seem to know words with one another that I cannot decipher. Its totally amazing and I thought it was just a twin thing. Simon loves everything about life. He loves to come into the kitchen when I am cooking and say “uppy” so he can sit on the counter, pour salt or pepper into whatever I am making, help stir pots of bubbly foods and taste things as we add spice or sauce to them and say mmmmm more……Those things to me make my days and worries all disappear. He deals with this everyday, I get a break to go to the store or spend time with just the girls or a much needed dinner alone with Dave, but Simon, he gets the pokes and pains every week and still smiles at those of us who make him go and put him through it all in hope of finding the answer, providing a solution to a healthy life. I will learn so much from him and there is no doubt I will find things in life that matter more than any mother ever could have imagined. Please pray for him, for vntrs of 100% donor cells. God Bless Tracy