Fear Not

As Eric just turned 16 I look back feeling melancholy. Since MLD I don’t look back too much at the life I used to have… It does no good.l… Yet the pain and sorrow is covered by love and kindness by so many. I wish that helped me as much as everyone wants it to.

I find me being so hard on myself and beating myself up every day…. The “shoulds” that are constantly forming in my mind every time I feel sorrow. I should be grateful, I should be happy, my child could be in a wheelchair already so I should be thanking God every day they are not. The list really goes on but it’s pointless to keep going. Here is the thing… I am all those things BUT I am still in pain and I still have sorrow. Acceptance has not come yet and I don’t know why… Yet I do have an inking as I search every single day to find my own personal truth.

When we are little our dreams are all different … My dream and wish was to always “just” be a mom. I wanted to simply love a child (or 4) and show them that my love was unconditional… I knew that they would be my first priority and they would always know they could count on me. I didn’t plan on MLD… I mean who does? That’s a joke… No one plans on cancer, accidents, rare diseases… We think we will have kids and the big problems will be preventing them from drinking as they get older…. Or worrying about them driving. Never did I think of the possibility that two of them might not even make it to that age. How does one even comprehend that?? It’s better off not to try.

I know today the struggles are not what some with this disease are facing but nonetheless they are struggles. Hearing your son say at least five times a week (sometimes five times a day) that he wants to go to heaven to be with God is gut-wrenching! Somedays we talk about it, somedays I know he is just sad and that is why he says it so I comfort him and other days I change the subject. It’s never easy because I don’t know what is going on in his brain… Neither does he. He says it often that his brain is messed up and doesn’t work like it used to. Just sit with that for a minute. Your son knows that something is wrong with his brain but can do NOTHING about it let alone understand it. I can do NOTHING either and it is painful.

Today I ran into someone and she said “so, are the kids all better now?” Now I know she meant well and I don’t expect anyone to understand but boy do I wish it was that simple; cut and dry. I wish they were “fixed” . If only time could be stopped and they could be little forever…

Here is a great song and I love the lyrics by Billy Dean “let them be little”

Let them be little, ’cause they’re only that way for a while
Give them hope, give them praise, give them love everyday
Let them cry, let them giggle, let them sleep in the middle
Oh, just let them be little

I’ve never felt so much in one little tender touch
I live for those kisses, your prayers and your wishes
Now that you’re teaching me how only a child can see
Tonight while we’re on our knees, all I ask is please”

I love the verses and tonight I will just say that simple prayer…. Please… Hopefully God will know just what I need and answer my prayer.

~ by Rebecca on February 9, 2015.

Posted in Back to life and living, Life after diagnosis
Tags: Eliandellasprayerwarriors, journey, joy, life, metachromatic leukodystrophy, MLD, sorrow