Living, learning and loving

Life can and will throw curveballs… It’s a given. Maybe yours will come early, maybe later in life …. Maybe they will be thrown at you as long as you are on this journey called life. Life is never equal or fair and once we realize and accept that we might be able to live the life WE were meant to live.

Ha ha ha … I just re read what I wrote and had to laugh. I may write these words, think them and even believe them but until I can truly accept them as truth it’s just another statement. Maybe someday I will but until then I will continue to press on and learn what I can on this journey, always hoping to improve who I am and how I deal with my own curveballs.

Recently I was in Milan with the kids and Mommom… I had the opportunity to meet so many different families who are struggling with having a child or children with MLD. I didn’t know what to think before meeting everyone… How would I feel? Would it be helpful? would it be sad? It was a lot of everything! It was a gift! MLD is a rare disease … Not cancer and not something you find many other people have. To have met others who are going through the same thing was simply wonderful. Filled with tears and laughter were our moments together.
My heart so heavy for Tyson and Rylee whose hopes were dashed for Gene Therapy and on the flip side feeling so happy to meet the Price Family and see Giovanni four years post transplant (number two in the trial.) We spent hours together …. Dinner, hours on the sofa talking and crying in the hotel and just enjoying being with others who understand. LEARNING …. If you allow yourself, you can learn from everyone that crosses your path. I find myself open to everyone I meet…. Taking it all in … Believing people are put in my life for a reason.

I always believed that people are good! Even the not so good ones are good if they let it come out. I think it helps when you look at the world this way… Believing that if people have the right people around them and can let their guard down the good will shine and the love will be let in. When you believe this, people will show you that you are right. It’s truly what you want to see in the world. People surprise me every day with their kindness. A couple of weeks ago a young boy in Eli’s scouts (Thomas) told his dad he wanted to win a prize for Eli out of the crane game… He did and gave it to him at our Den meeting. It brought tears to my eyes. The school and staff goes above and beyond with their love, care and kindness…the neighbors (Calvarese) who make sure Eli gets across the street when the bus comes if we are not out there, our friends, doctors and nurses in Italy who love the kids and have opened their hearts to all of us. Just one instance today as I took Evan to CHOP after hours for his knee. One or two people there knew Eli and Ella and their story from all the times we have been there and a few didn’t know them yet every single one of them was so kind, caring and compassionate the whole time we were there… Going above and beyond what is expected. They are just another reason why I have so much hope for people. It turns moments into memories when you witness the goodness in people.

I really have to say thank you to those who have allowed me to feel everything I do… To those who know this is a journey and the journey is really just beginning… Eli and Ella are not free of MLD and we don’t know what lies ahead….we do have hope and I do cling to that but I am not naive. I cry, I have sorrow I have fears and I hate how much my life has changed. My faith comes and goes, relationships have been lost and some strengthened. I appreciate those who let me BE and love me anyway. It might only be a few that you realize you can truly be yourself with and I’m learning that’s all I really need!

When tomorrow comes I will try again to live, love and learn…. I will try to focus on what really matters and I will hopefully be a little better at dealing with the curveballs life keeps throwing at me. One thing is true no matter what and that is this…. I will always be grateful for it all… The good, the bad and the ugly …. Because it is here where you learn who you have the capability to become!

“When we long for life without difficulties remember that oaks grow strong in contrary winds and diamonds are made under pressure”



~ by Rebecca on February 22, 2015.

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