Fear Not

On this day last year I was in Florida preparing to leave my dad for the last time, enjoying his hug and making it last as long as I could…knowing it would be the last hug I would get from him until we meet again someday. Just a few weeks before we found out he had lung cancer and just not two weeks before we found it had spread everywhere. WOW!! What do you do when you find out you may only have weeks with your loved one?? You live, enjoy every moment and you make as memories as you can. That is what I did along with my brothers, step- sister and step-mom. What happened in the last few weeks of his life and how my dad handled himself as he was dying has prepared me in many ways for what would lie ahead in my life. I have learned to appreciate the different relationships in my life and all the great things I get from each one…I have learned that no matter how much we worry it will not change anything…and most importantly I have learned that I am much stronger than I ever believed myself to be and I can pull strength from somewhere even when I think there is none left.

The last month has been filled with many emotions…figuring out when we would be heading to Milan for evaluation, hoping and praying Eli would remain stable, trying to keep life as normal as it can possibly be and finding a balance between everything!!!  some days I don’t know how to do that as life seems to be slipping away at times.

The last 4 and a half months has all been for the journey that is about to start. From the day we came home after hearing Eli would die from this dreaded disease after being told there were no options out there for MLD, to deciding NOT to let the doctors words become a truth in our mind this has been the journey of every high and every low. Make-a-wish was the most surreal thing I personally have ever experienced. It is hard enough to accept that your child (children) are eligible for a wish but then to witness the kindness and joy from the people from make-a-wish,  Dave & Busters and the WWE it is like getting on and off of that emotion rollercoaster over and over. Eli’s smile when he got to arm wrestle Sheamus and race cars with the WWE Superstars was enough to make anyone feel the magic of the night. There were many moments over the weekend that I had to step away and shed a tear or two. Some days I have to admit I still can’t believe this is real and not a dream. I cried out to God more than once on that trip…it’s not fair…I love you so much and have always been proud of that. I have shared your love and I have forgiven over and over again…ALL FOR YOU!!! All I ever wanted to be was a mom and now the possibility of having 2 sick kids is staring me right in the face, shaking me to the core.

This week will no doubt be the most important week of my 40 years of life. I have asked for prayers and asked for people to believe they have both already been accepted  but truth is the whole thing is out of my control. God knows what lies ahead for both of them and I have learned to give it all to him. I want so much for his will to be mine but if it is not it can only mean that he has something else in store for Eli.

Tomorrow I will share my story of faith at a Community event that some awesome women have put together for our community. As I was thinking back to my relationship with God and how it really started I can always remember thinking that God had a BIG plan for me. I guess God was listening when I asked him to use me…when I told him I wanted to make a difference….this must be it and I will try to see every good thing that could possible come from this. As I was recently reminded and this is exactly what I mean …John Chapter 9 Verse 3 ³ “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. AMEN

~ by Rebecca on February 7, 2013.

Posted in Diagnosed