As I sit here in the wee hours of the night I look at the calendar on my computer and can’t believe that tomorrow is Dec 20th. Three months since diagnosis date of Sept 20th. They say your life can turn on a dime…I know I felt like most of you until that day…”that happens to other people not me”. I have enough shit in my life so God would never allow anything like that to happen to me. Well….NOPE …don’t ever think that because you never know how strong you are until strong is the only choice you have.

Just a few nights ago I remember doing laundry and I simply lost it. Every emotion that I never dealt with three months ago I was now facing. I remembered hearing the words “he might live a year, maybe ten…we just don’t know” It rang again and again in my head…I just kept thinking this is true… I am now living it and it is crazy! “No cure, treat the symptoms,” All these things I was now faced with as I was looking at Eli’s undershirts wondering if he will ever wear the hand me downs of his brothers…”God I just don’t understand!”

So… I feel that I have been pretty good the last three months… I mean I lose it here and there but I expect that of myself. Of course things can creep up and for no good reason… tonight  was one of those nights…I came home from starting my Christmas shopping and I don’t know what happened but something set me off…  I got upset and went upstairs. Now here is the funny part…I recently got a tattoo that says Fear not and here I am fearing EVERYTHING!!!  Will Eli stay stable, what about chemo, will he eat enough, can I fatten him up now…and the biggest question… how in the world do I tell him he is sick? This just literally breaks my heart. I can barely type it without crying.

I saw my friend Polly tonight and she told me she made a book of pictures for Eli & I am sure for me also for when we are in Milan. Pictures of Eli & his best buddy, pictures of this baseball season where I was so lucky enough to coach him. I just can’t imagine leaving… but thank God I will have these special memories to take with us to keep on keeping on. I can’t imagine what I will need to keep me going being so far from my family.

Eric & Evan do not want to go to Milan right now so I am letting them make theat call. They both want to play baseball this summer and I get it. I just know that I do not want them to regret this decision as they get older. As I say all the time… they will be in therapy for something as they get older… I just don’t know what it will be for yet;)

Here is brings me to the next problem…how can I leave my Eric & Evan for 6 months??? Maybe I will see them for a week here or there but to be without them for so long will be like missing a part of me!! How to be separated from your babies for all that time is beyond me.  I remember when my dad got sick this year, it was this first time I had left the kids for more than one night. Although it was a challenge, we face timed every day. For the month of January I was back and forth 4 times and it was quick…thank goodness! I am scared of how much I will miss them.

These emotions are hard… some days I do not want to do a thing; I do not want to talk to people, or answer emails… I barely want to talk to my own family…I don’t want to have to put on the strong face when all I want to do is crawl into a ball and go in the corner.  God just help me on this journey…that is all I can ask for. Let me love these warriors to the best of my ability

John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

May I remember these words spoken …and feel blessed that I believe in a plan… in God’s plan. He has brought so many AMAZING people into my life through MLD …so many amazing people who are praying for  Eli & Ella and believing in them  too!!! It may seem hard to believe but I feel so blessed. So blessed that so much good has already come of this disease!


~ by Rebecca on December 19, 2012.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: