It doesn’t have to be RARE to turn your life upside down
We never imagined our world could ever be turned so upside down by a rare disease that we never heard of, but who does. We are not alone though, and even though it might not be a rare disease for you, it could be a divorce, cancer, or the death of a loved one.
We tend to live our life and never think certain things can happen to us, only other people.
I remember when I was 15, all I ever wanted was to be a mom. I had so many hopes and dreams of the life we would have and there was no reason to believe I couldn’t have that dream come true.
When Eli was diagnosed he was still pretty darn perfect and could still run and play baseball, he had friends, and enjoyed life, despite being such a challenging baby.
When Ella was diagnosed a few short weeks later, I wanted to die. I really couldn’t imagine the thought of losing two of our four kids. It was a deep and dark place for a very long time.
I would have my wine at night to numb my pain, because it worked… temporarily.
We fought for the trial even though many were against it. They thought we were crazy not to do a bone marrow transplant.
We spent many sleepless nights trying to figure out what we should do and how we can convince them to accept Eli and Ella in the trial.
We sent daily emails and videos to Italy hoping and believing that we would get our miracle.
When we found out they would be accepted, it was the best and scariest time of our life.
Separating our family for so long, the unknown treatment and side effects, the list goes on.
These moments will be etched in my brain forever and I will always wonder if we made the best decisions for them.
I never pictured the future of our life, because I couldn’t imagine what it would look like. It wasn’t just about Eli and Ella but Eric and Evan and Hut and I.
I continued to numb because that is the reality of not knowing how to feel what I felt. I didn’t want to feel it all.
The depression and anxiety got worse knowing we would have to do this again with Ella, however to most, my face told another story. A mom that was ok, getting by, and holding it together.
Inside I was dying.
I could not accept this as our reality and now almost 13 years later, it’s still hard.
The only difference now, is I make it through without numbing. Four years now living alcohol free, dealing with feelings as they come and go, knowing feelings aren’t facts.
Life is hard… every day! It doesn’t mean it’s not filled with joy, and we don’t laugh and have fun! We do, but it never isn’t challenging.
There are so many challenges that we face on on daily basis but there are a couple that are beyond overwhelming.
Eli and Ella’s memory is enough to break your heart.
They forget names, what we just talked about, that they will never drive or have kids, they forget that their friends are not the same anymore as the gap continues to grow due to their maturity. They forget how to get around in a place we have been many times. Many days it is like we live with two little people who have Alzheimer’s.
We hear these same unanswerable things every day:
When will I drive, when I have kids…when I move out…I want to go to college, I want to drive, I miss friends…why do I have this disease, why can’t I heal, why does my back hurt, why don’t my legs work, why do people stare at me, will I die from this?
It’s so overwhelming that sometimes Hut and I just have to look at each other and laugh because the alternative is not good!
MLD has completely changed our family,
My heart breaks more often than not for Eric and Evan and for Eli and Ella. Eric and Evan at least got the good me, the fun mom who did everything I could with them, lots and lots of fun memories. Now Eli and Ella might get get MORE of me but that doesn’t make it better. They get the stressed mom, the mom who cries easily, the burnt out caregiver mom! That is so unfair to them and I’m so sorry for that.
This is a scattered writing, but that’s how this life is. I could write for days about the changes that MLD brought to our lives because it is never ending. However there has been so much good as well and I will share that as well.
Life is hard, I know we are not alone on this journey and I understand other families suffer like this for other reasons, or other diseases.
I have always worn my heart on my sleeve about so many things and will probably continue to do so. It’s who I am.
Maybe someone can learn compassion, can feel better knowing someone else went through something similar that I share about our life. Maybe all the sharing is just to keep ME going for one more day.
We really only have today anyway, doesn’t it feel good knowing you can be someone’s light in their life. We have had many that have shared their light with us, enough to pull us through some really hard times! For that I am beyond grateful!
It’s amazing how you can hate your life and absolutely love it at the same time!!! That’s me! Our life is simple, filled with forgiveness, love and ever growing acceptance that things don’t always turn out like you want them to, but when they don’t, I can promise you this, PEOPLE SHOW UP!!! It’s so beautiful!!! If you let them, strangers, friends, Family, teachers, FB friends, People show up and help you through!
I am so grateful for my vulnerability over the years because I know in sharing so much, that I, WE, are not alone!
Fear Not 