Feeling it all
I wonder who I am sometimes…am I the one with the great faith believing in Gods plan no matter what or am I the fearful woman who still feels like a young girl wishing this was all a dream…some days screaming out at God wondering how this could really be a part of a bigger plan. It seems as though the doubting me is the one I seem to see more of lately. I don’t like feeling that way but it is something that I can’t fight. I have been trying to embrace every feeling and emotion that I have lately hoping that if I feel it maybe it will help get me one step closer to acceptance of what lies ahead.
I remember being at Disney looking around at all the families you see and I couldn’t help but wonder if they are living a life like I used to live…a life filled with normal worries about sports, is the house clean today, can we go on vacation this year and where to. Actually I don’t really remember what I used to worry so much about before Sept 20th. I just know now that I will never have that type of normalcy again for the rest of my life. It will be a new normal and I am not looking forward to it. When I thought my life was hard back then it was but I would give anything to get those days back. I know for me personally I find myself getting caught looking at a picture from a while ago and I get lost in that…lost in what life used to be like before my life was changed forever.
Slow torture is the only way to describe what I feel like I am going through waiting for our next visit to Milan. In late November we found out they would see both kids to evaluate but they would see them in Feb…ok time to wait…2 and a half months…lets believe they stay good till then. As Feb 8th came upon me I was so excited knowing that Eli seemed GREAT! Almost better than diagnosis Month. Everything went great but now we have to wait another two months …OMG… I almost can’t take it. Two more months of waiting, knowing something could change… I mean it is MLD, it is progressive…of course it might change. Now I have ANOTHER two months to wait, hope & pray. A slow torture as I said, knowing that if they had the vector done in February they would have taken them both but now it’s back to more waiting.
So now as I wait I try not to think of how it will go in Italy. I try not to think of what they will go through or what it will feel like if I have to send Eli home on a plane with his dad. Unfortunately those thoughts do creep in here and there but then I try to look at my healthy kids today and know that for any of us all we truly have is this moment that we are in RIGHT NOW. Gosh that is so much easier said than done.
I saw earlier this week that Kindergarten registration is this month at Oaks. I remember how excited I felt at the thought of Ella going to Kindergarten. As my last child she is also my most “advanced” and by advanced I mean she can color a mean picture and stay in the lines too!! She is so ready and so was I. I could finally volunteer for EVERYTHING because they would all be in school! Eli and Ella would be sick of me because I would hopefully be in their class way too much. So as I let the feelings of sadness soak in about another dream not being as you thought it would be I felt sad and moved on. Ella will not be the only one I am sad about… I am going to miss Evans confirmation, I will miss countless of baseball games and if you know me you know that is a very big part of my life. Eric is now 14 and trying to figure out where he fits in and how his life has changed being the oldest. I am trying to plan little things for the boys when I am gone so they will know I am always thinking about them. Some might say you can’t think of all of these things, they will just make you sad but I say you have to acknowledge everything, feel it and then you can put it in its proper place. Of course the most important place for me to be is in Milan and that is all there is to it! Someday it will make sense to all of us.
Almost 6 months ago…wow almost a half of year has gone by and I can honestly say that I am a totally different person and although I have my faith I still HATE this situation, I still scream at God, I wonder why me, I doubt, I fear, I cry and I wonder some days how in the world will I do this.
As I look at all the other amazing MLD families that I have “met” out there I say to myself “They are doing it” and they are doing a great job!! We are all on different journeys but we are all in it together and I am so grateful for the strength that I gain just from knowing them.
God knows I will keep fighting and even when I have my bad days (which seem to be more and more) I still know that I will take one step at a time and not look back…he will carry me forward even when I don’t want to go forward anymore.