In so many ways my children have become who I am…. Literally. There are very few times in my life when I am away from them. Ava was our first to come along and she rocked our world. We had never laughed so hard, felt so much love, or strived for so much in our lives. Then came Jaiden and he/she taught us that love that is lost is something you never get over… never. Finally came Jackson and boy he is constantly throwing us for a loop. I find myself so busy taking care of my children and learning for them and through them that they have become a lot of my identity. And recently more so if I had to take on a title it would probably be: Heart Patient Crazy Mommy. Although I say it in good humor, there is a lot of honesty behind that title. In so many ways Jackson and his condition has taken a hold of every area of our lives and reshaped it. It’s taken over our finances, our location, our priorities, and our marriage.
I find that sometimes the best way to help yourself and others is just to be as honest as you can and so to that I would have to say, “Congenital Heart Disease (Congenitally Corrected Transposition of the Great Arteries) has taken over every area of my life.” In so many ways it kind of has to. After all, as a mother I have to do everything I can to give my kids the very best. I heard it said once from a surgeon that heart patients have to have something to fight for, if they don’t, their heart won’t fight to beat in recovery from surgeries. Granted, some hearts stop beating simply because it is time for them to. But, it stuck with me. So, everyday I wake up and I try my very best to give Jackson every reason in the world to want to fight for his life. I feel guilty when I am not holding him, I stress when he is upset, and I worry constantly that I am not giving enough time, energy, and effort to both my kids. (this is probably true of most moms). Between budgeting, bills, grocery shopping, nursing, hospital appointments, school planning, cooking, etc, it’s overwhelming.
But then the time rolls around every night when the kids go to sleep and there is for the first time a moment to sit and rest. But, wait, “a payment plan needs to be set up for that bill, the car transmission light is blinking( research the fix), ava isn’t signed up for dance class, must sign up to meet other moms in the area, Jackson needs a refill prescription, and on and on. Enter now my husband who is wanting to catch up and spend time together….. ahhhh!!!! To my poor husband, you get the little ounce of what is left of me and on some days the nothing that is left and I am so sorry. I’m trying!
So, tonight I ponder about the life that I have and the life that I strive for. I have all the incredible ingredients, but I am all out of whack on how to make it just right. Life will never slow down and I will always be the mom that pushes myself to go to the ends of the world to do what I can, but there has to be more than just trying to keep my head above water. I want more than surviving, I want to enjoy my life more than I ever have before.
So tonight we bought bikes and tomorrow we are headed out with the bike cart in tow to enjoy this new city of Houston. We moved here for the heart of a little boy but we as a family will not be defined by a medical diagmosis. It’s time to stop pushing so hard that we forget to slow down and just be what we are. A family trying to fight for what’s most important in life. A mission. An opportunity. An open door. A chance at life together. I will never know what his little heart is doing, but today it is beating. So live, breathe, end enjoy the time that we have. Tomorrow will be what it is, but today….. today is m