Fear Not

They say it all the time… Don’t look back, you can’t change the past, you can only learn from it. I can only hope that one day I can stop looking back, wondering what life would look like if it just kept going as it was.

It’s something that happens often when I see kids Eli or Ella’s age out and about.. Whether in Kohl’s or Wegmans or just at a park with their mom. The sadness that still comes over me is enough to make me frustrated, sorrowful and angry… And it’s been two years!!!

It’s something that happens every time I watch Eli walk down steps …. Watching his little legs wobble wondering how long they will continue to hold him up… Will it be forever or do we have a year?? Why is this even a question that has to be asked or thought of?!! This is when my mind goes back to where it doesn’t belong…. The past, when there was never a question about life and death…. Not a fear of wobbly legs or the trembling of a hand.

I believe everyone deals with things at different times and acceptance comes sooner for some than others. For me… I don’t know if it will ever come. Just typing these words makes me cry because I want to be like the other people I know…. Why can’t I be like them. They seems happy, accepting and have learned to move on and find a balance. Me, not so much.

When all I ever wanted in life was to be a mom it’s hard! Raising kids differently than I was raised, making them never question being loved… Being there for them and loving them unconditionally while helping them to become strong, compassionate caring individuals… This was what I wanted in life. Now it is a struggle to accomplish these things along side of doing everything I can to help prevent disease progression, to try and make every moment memorable and to focus on the present and not the future.

The present is a moment between the past and the future…a place between that not so healthy place to dwell and that place where you can only imagine what will happen next. Every day is an experience to try to learn to stay in that in-between state …may the only time I look back be to continue to help propel me forward.

It’s a sad feeling when there is not much you can do for your child who has a rare disease such as MLD. When you are forced to watch the realities of what the disease can start to do to your child and you are helpless to stop it… This is what real pain is like…a helplessness like no other.

So maybe someday I will accept what is happening to these precious babies and their body…. Maybe I will be able to let go of the dream that I held for so long about what I thought my life would be like and maybe just maybe if I am lucky today will be the worst the disease will get and looking forward will be something to get excited about again!

~ by Rebecca on October 12, 2014.

Posted in Back to life and living
Tags: acceptance, eli, ella, future, helpless, life, metachromatic leukodystrophy, MLD, past, presrnt