I look back at the past few years and I can’t believe we have made it… this sounds depressing but I am so tired, and really just frustrated today. I know that the news at Josh’s last ECHO wasn’t terrible, I understand that there is hope, but yet here I am, a few days later and it’s begun to sink in that here we are yet again ‘waiting and seeing’ and I am tired of it. I know that God’s hand is working, that he has blessed us and Josh, and I know I sound like a spoiled brat as I write this, but honestly I can’t help but ask why they didn’t just replace the valve if this was going to continue to be a problem… my brain says that there is a reason, it was dangerous and risky and the bigger he is the better… but let’s be honest, repeat surgeries can’t be much safer can they?
This being a new problem is another source of frustration for me. I can’t help but asking ‘what next?’. We are always given a new set of symptoms to look for, a new thing to worry over, a new problem with his heart and it leaves me wondering. What if they fix this and something else goes wrong? At what point is it unfixable? I mention this to someone and they feel the need to ease my mind, tell me not to worry about what if’s, not to lose faith, not to doubt. They try to make me feel better, but the reality is that I need to say what’s on my heart, I need to share my fears, speak them out loud because if not, then all those fears creep up like monsters under the bed in the dead of night.
My head knows the that I am blessed, my head knows there is hope, my head knows that God can do anything, my head knows that he’s got a plan and that he is in control, my head knows that the doctors we are dealing with are some of the best, my head knows that surgery is not necessarily a sure thing, that Josh may well tolerate this new development for years to come, my head knows that when and if we have to deal with this surgically then we will find the strength, and the courage. My head knows that every day of ‘waiting and seeing’ is a day that Josh knows no suffering, that he can have as normal a child hood as possible. My head knows a lot it would seem, but my heart is not listening today. My heart is afraid and angry and frustrated and just plain exhausted today. My head needs to speak up and tell my heart what it knows…
This journey is such a day to day thing… I can be full of hopes and possibility today and then crushed in defeat the tomorrow. I look back at the miracles we have seen so far, and I try to hang onto them, hold them close for moments like these when I have nothing to hold onto, but today I find no comfort in them. Today I look at them and I am forced to ask myself what the purpose was? Why were they able to fix the tricuspid last time in what we believed was a miracle when three months later it would again be causing grief because of that fix? Was God listening to all the voices that I know were praying for Josh? Did he not here the begging of masses to heal this little boy? Does he not listen to my daily cries for his healing? This again is not me trying to get you to answer me with pat answers, I don’t need to be told ‘yes he hears you…’ because I do KNOW that he hears me… I just need to share honestly in the yucky thoughts too and not just always the positive faithful thoughts.
Tim preached today about the Holy Spirit (worth a listen if you have the time – go to St. Paul’s website in a couple days to hear it). My only thought through the whole sermon is how desperately I miss feeling loved by my Father and Creator, how much I need his comfort and to hear him tell me that he is indeed in control of this. That he knows’ what he’s doing and not just playing with my son’s heart.