Beam me up…

The excitement in Eli seemed to mirror the excitement I was feeling. As I watched him with a Little Smiles Stars Ball book opening it to the page with his picture, getting ready to sign his first autograph of the evening I watched as he opened his sharpie and put a big E over his picture. I watched him and fought back the tears that wanted to flow freely about so many things but at this particular moment it was from watching his little hand shake as he held the pen. The whole reason I/we believed something was not right in the beginning has now become even more prominent and a reminder of this horrible disease that we are fighting. IT SUCKS!!!!

As we finished a wonderful evening to honor some amazing children we knew we had to get some sleep for the MAW walk this morning. What a wonderful showing by some of our amazing family and friends. To be there to walk with us as we try to give something back to a wonderful organization that has given us so much…so many memories that hopefully will live on for a very long time. A young adult wish recipient spoke about what MAW means to her and her family…how she is so grateful and how she will work volunteering for MAW as long as she can! I really hope someday Eli AND Ella can share their experience of what their wish was and how MAW made that come true. The truth is we just don’t know and we might never know so it is just another opportunity to live in the present moment and try not to think of the future.

While I try to live in the present moment there are many reminders in the present moment of things Eli just can’t do like kids his age. After the walk I dropped Evan at baseball practice. When I pulled in we went past Elis age group and I can’t help but wish he was out there playing. Fact is, he is just not strong enough…truth again is I don’t know if he will ever play again. Maybe he will be the kid that parents feel sorry for …maybe he will think he is better than he is because he gets treated differently or maybe he will realize that he just can’t keep up with everyone else. Sometimes he asks me but mostly Hut “Will I be on the All Star Team like Eric and Evan” What we both say is “work hard and keep getting stronger” …we have to believe WITH him…no matter how hard of a stretch it is TO believe.

There is a song by Pink…Beam Me Up… I am sure most people have heard of it. It is a great song that I love but there are a few lines that really move me. “Beam me up, let me be lighter, I’m tired of being a fighter, I think a minute’s enough, just beam me up” This line particularly speaks volumes. It can be so tiring being a fighter…fighting the disease, fighting my emotions, more importantly fighting to try to find peace, joy and light on the days when darkness seems to overpower everything. Maybe that minute…if it could ever happen, would be enough to recharge to just keep on keeping on…or as my brothers and I used to say as my dad was dying …Just keep swimming (in our best Dory voice)

So today we got really great news…finding out when Ella will be treated!! We also found out that Elis marrow looks good and the enzyme that he was lacking is now in his body at almost 3x the amount of normal! Simply wonderful news!! It is just so nice to have a plan. As I have had the day now to think about the news and feel everything that comes with it I can honestly say that the feelings are so mixed. There are good and bad things about knowing what to expect when we go back …I think they both are obvious what they are but some are worse than others. The thought of Ella turning into a semi monster from anti-seizure drugs just makes me sick to my stomach and the picture that is in my mind of her little bald head is just something I almost can’t fathom. Sometimes I beat myself up thinking these things are trivial but I will acknowledge how I feel and try not to fight it.

Maybe one day God will beam me up, give me a minute and I will ask him why…then maybe he will give me the strength I need to keep going because I am sure I could never understand his answer anyway. Until that day I will just have faith that SOMEDAY …YES SOMEDAY I will know why and this will all make sense.

Elisabeth Kubler-Ross …”People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in; their true beauty is revealed only if there is a light from within.”


~ by Rebecca on October 21, 2013.

3 Responses to “Beam me up…”

  1. Dear Becky,
    I am in awe of how beautifully you express your feelings. I hope that you feel even a little relief putting you inner most thoughts into words. I think about your family everyday and send all the healing light and love I have for all of you ,especially precious Ella and Eli. I love Elizabeth Kubler-Ross . You are all beautiful people and your light shines brightly from within.

  2. You covered so much in this post I can’t imagine you aren’t exhausted after writing it….You are so honest with yourself it will only serve you well through this journey even though it may hurt sometimes…As an outsider, another parent, who sees your son, and sees other kids on a day to day basis doing regular things so easily, I never look at Eli & feel bad for him, Yes I have tremendous compassion for him it almost overflows sometimes reading your posts, but pity? Feel bad for him? NEVER…compassion. Inspiration soars out of him without him even knowing it – and that is just one of the many things he is & will be extraordinary at…baseball may not be it or golf of track because the symptoms caught him before you were lucky enough to get to Milan, but he may coach that team, or manage that organization or teach that student…for now, he is fighting & inspiring and that is EXTRAORDINARY.

    Your children are in a place that so many others with MLD will never be, a place of hope, real life hanging hope. EXTRAORDINARY…the LIFE of Eli & Ella and their amazing family.

    He truly inspires ❤️
    Thankful. Praying. Believing!
    Next up…Ella, the warrior princess ❤️

  3. Becky, do they have any idea if the good cells will reverse the damage in Eli, or are they supposed to keep him stable? I pray there is no more progression for Eli! Your strength shines through in every post you make. I admire you.

    Great news about Ella and the plans in Milan! It must be much harder knowing all she’ll endure. Hopefully she is blessed with peace and understanding through the trials and tribulations. I know you will all come out on top with all of this!

    Thank you for the update. I pray for your family often. You have such beautiful children!

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