“She is clothed with strength and dignity, and she laughs without fear of the future.”Proverbs 35:21
April 8, 2014…it was just a day. It was a day that had been coming for nearly 18 months. It was a day we could finally breath again. It was the day Matt was officially diagnosed with ALS. I say we could breath again because we had been holding our breath for 18 months. Hiding the inevitable from everyone except a select few and holding on to an ever slimming hope it would not be ALS. Once we got that official diagnosis it was a relief.
Two things to start off with in this first “post” from me, the wife, the caregiver, the mom. The first is, believe that I cried, yelled, denied, then cried again. A lot. About 18 months prior when the first neurologist told us it could be ALS I crawled into Matt’s lap while our 6 month old was napping and I cried. Then I called my best friend and cried some more. I got to the point where I almost couldn’t breathe. Don’t Google ALS when you get the preliminary diagnosis. Google doesn’t know anything about ALS. The second, and this is a piece of wisdom from a woman I greatly admire – Mrs. Lynne Nieto – both of you were diagnosed with ALS. It’s not just your spouse. It’s you too. Your life is about to go all kinds of haywire. There is no way to prepare for the cruelty that is ALS. But, guess what? If you make the decision to stay, you can absolutely crush this disease. By that I mean, you can live it on your own terms. Still laugh. Still love. Still have a pretty freaking great life.
Unfortunately, your spouse doesn’t have the option to “opt out” of ALS. Some spouses don’t think they can stay, for whatever their personal reasons, and they leave. For me, I didn’t have that option. If you have ever met my husband, you know he is charming, handsome, intelligent, and charismatic. He draws people to him. I was no different those 18 years ago. And I’m still not. I have loved him beyond measure for over half my life, and that love has only increased while we grew our family. When we met at the end of an aisle in 2007 we thought we were headed to a life of Naval Aviation not a life of advocacy for the terminally ill. But, this is where we find ourselves, side-by-side most of the time. Sometimes he is the one dragging me along, most of the time it’s my stubborn personality forcing us to do things that are probably beyond him. Fortunately he loves me enough to let me force things.
Since we were told it most likely was ALS, in Fall 2012, we have moved halfway across the country, had 2 more children, completely renovated our home to make it accessible, flown our family to San Diego to take our kids to DisneyLand, talked to countless members of Congress on countless trips to DC, met the President, advocated and passed The Right To Try Act, and taken our 3 kids, au pair, and 4 grandparents to the Grand Canyon. In between all the big events, we taught our kids to walk, ride their 2-wheelers, been to family weddings and funerals, made new friends and said goodbye to others, gone to the beach, had a newborn in the NICU for 18 days and lived a normal suburban reality – just with a guy in a wheelchair. Pretty. Freaking. Great. Life.
Fortunately, I made the decision early on to let my stubborn side reign. Although ALS is a large part of our life, it is not OUR LIFE. I had a very clear picture of my life from an early age. I was that girl that dreamed of the white picket fence, 2.5 kids, family dog and a ruggedly handsome husband. I am living a different version of my dream. I have a natural wood picket fence, 3 kids, crazy dog and a ruggedly handsome husband with ALS. Some days this dream can feel more like a nightmare. I don’t want to paint a rose-colored-glasses view for anyone. There are days when I fall exhausted in to bed, not quite sure of the last time I showered or brushed my teeth, with the sink full of dirty dishes, piles of dirty laundry (maybe a wet load in the washer?), next to a husband I know will wake me up at least 4 times to rearrange him throughout the night with tears behind my eyes and a lump in my throat. On those days I have those thoughts – “I can’t do this anymore.” “I am so tired of this crap.” “I just want to walk away.” “I don’t want to be angry anymore.” And on those nights, before I go to sleep, I try really hard to tell myself – and believe – that tomorrow will be better. I can tell you that there has never been a morning where I woke up that it was not better. There has yet to be a morning in all those 2,113 days that I woke up and have thought “It’s not going to be OK.” That is what I want to leave to anyone reading this. Everyone has their own struggles which are just as real as anything anyone else is going through. Don’t diminish your own struggles. Know, either as you go to bed after an awful day or wake up to a new hardship, it’s going to be OK. You got this. If you don’t believe you do, there is someone in your life who does believe in you. And if you still don’t believe you do, listen to this bit of motivation Matt and I both turn to on those exhausting days: