“Love is the only engine of survival.”

Leonard Cohen

People tell me they admire me. It’s a very weird experience for me. I am not comfortable with it. I’m not a particularly admirable person. I’m really quite average. I was thrust into an extraordinary situation and am dealing the best way I know how. So when a friend tells me that I “inspire” them, I really am baffled.
I get that our life seems tough to a lot of people. And it is tough. Living with ALS is no walk in the park. There are hopeless days. Days that are filled with tears and anger. Days where nothing goes right. But those types of days happen to EVERYONE. To differing degrees, but I can’t name a single person who is in a constant state of awesomeness. Everybody gets through those icky days a different way. I personally put my head down and literally push my family over the finish line. And then usually find a stash of chocolate somewhere before going to bed. To each their own.
Our life is extraordinary as well. Because of ALS we have had some amazing things happen that would never have happened otherwise. Flying to Colorado and Arizona to speak at events. Meeting the President and Vice President of the United States. Cultivating friendships with some of the top lawmakers of this country. I understand to the vast majority of America that these are not common things. I understand it would not have happened had Matt not been Matt and gotten ALS.

Maybe that is why people tell me I am an inspiration. Matt has this intangible thing that elevates him above the average human being. People gravitate towards him. They trust him immediately and tell him some of their life stories within minutes of meeting him. He was telling me the other day that on his bus rides he used to take from our house in Richfield, MN into Minneapolis for work, there was one guy who was telling him he had completely ruined his life because he used to beat his wife. Not sure about you, but not a conversation I would have with a stranger on my morning commute. And that’s not the first time something like that has happened to him. It still happens to him. Sometimes I drop him off and go park the van and by the time I get back he is sitting with someone who we don’t know that is telling them about their fears for life. It really is crazy and I wouldn’t believe it if I hadn’t seen it for myself numerous times. Maybe some of his intangible has rubbed off on me over the years.
I have the opposite effect for the most part. I am firmly in the RBF category – Resting Bitch Face for those who don’t know. Some of my closest girlfriends have told me that when they first met me they thought I couldn’t stand them. It’s just my face. And I’m not an open person. I don’t radiate the light like Matt does. It’s more because I get very nervous and scared when it comes to meeting new people. I overthink and worry about first impressions, which is funny when my first impression is that of a bitch. I like to think that I am not and the people who know me can see that!

You see, I care what people think of me. At least what the people who I care about think of me. Strangers, not so much. But the people who I have in my life because I choose to have them there, their opinion of me matters a lot. For my own mental self-preservation, I can’t appear weak in front of them. A bit of my identity is wrapped up as the wife of “Matt Bellina, ALS advocate and extraordinary person”, the backbone that doesn’t ever bend. You need us in Washington tomorrow? I will figure out a way. Matt needs to meet with 4 senators this afternoon? I will walk, pregnant, around The Mall and visit the Smithsonians with our 2 kids while he does it. Want us to fly to Arizona? I will literally carry Matt onto the plane to get us there. You need our family to do something, I figure out a way to get the moving pieces lined up to make it happen. Failing to make it happen is not an option. It’s just survival.

Aside from survival, it’s love. Crazy, Stupid, Love. Isn’t there a movie about that? It’s the love I have for this man and his for me. I wouldn’t do the things I do for just anyone. I’m not that magnanimous of a person. It’s the love I have for my kids. I think most mothers would crawl across broken glass for their kids. This is a little bit the same. I want them to have the best lives possible and that means trying to keep their childhoods “normal”. It’s God’s love for us, as a couple. He put this obstacle here because he knew we would be able to scale it together. None of what I do in this ALS life is because of me. None of it is superwoman powers. I think a lot of cALS feel the same way and would tell you the same. It’s not super anything.
So, you see, it’s survival and love. I love this man, myself, my family, this life and I will help my family survive it. Although, I hope I can help them thrive, not just survive.

“Sometimes it’s the smallest decisions that can change your life forever.”

Keri Russell

When we decided to try for a second child within a year of our first, my friends in Minneapolis asked, “Why?!”. Not because they knew of Matt’s struggle but because our firstborn tends a little to what some might categorize as ‘crazy’. He crawled at 6 months, walked at 9, was high energy, and, in my humble opinion, was highly intelligent for his age. However, my response was always, “The second one can’t be any worse!” Our second came 2 weeks shy of our first’s 2nd birthday. He was a perfect scrawny thing that was opposite of his brother. He loved snuggles, being held and was thankfully a pretty chill baby. A cross country move and diagnosis later, I got it in my head we (me) really needed a third child. Like REALLY needed a third child. Matt was using a walker full time and wheelchair on longer trips. After a year of me asking (nagging constantly) Matt capitulated and let me have my way and now we have 3 handsome, perfect, rambunctious, crazy boys!
It’s a little insane to have kids in the first place when one of the parents has ALS. I completely understand couples that marry after diagnosis and still want to have a family. I also understand couples who choose not to add a little one. I am not sure why a couple would add a second, let alone a third child into the mix, but long ago I stopped trying to understand why I want what I want. A lot of times I don’t make sense even to myself. However, we found ourselves on March 4, 2017, almost 3 years post diagnosis, 5 years post preliminary, welcoming our third boy into the family.

We went in eyes wide open. We knew that already the task of being the physical parent for the older 2 had fallen largely to me. At the same time, Matt was increasingly needing me physically. Adding a newborn was going to stretch us to our limits. Little did we know that this guy was going to enter the world and the next day be rushed to the NICU because he stopped breathing and then spend the next 18 days there. Matt was recently full time in a power chair but I would drive us back to the NICU every day and most days go back at night.
Looking back, it was a gradual entry into what has now become my daily life. Not that we still have a really sick kid, but rather trying to split myself into too many roles and then getting angry when it doesn’t go the way I want. Remember when I said ‘I don’t want to be angry anymore.’ Most times, I cause my own angry. I can admit that now, but catch me when I am angry and likely I will blame you. Matt and my mom can fully attest to this character flaw. Most of the times I feel stressed and upset are because I have in my head this image of the wife/caregiver/mom and I find myself falling short. I am fully Type-A and have a hard time letting go enough to have things any other way than what I believe is best. Instead of giving myself the grace to fall short – because everyone does – I start looking for external reasons why I am not living up to my image.
Enter ALS. It’s the perfect scapegoat, right? I mean, my life would be perfect if it weren’t for this disease. I have a gorgeous husband, healthy kids, live in a great neighborhood, have awesome friends, my list can go on. If it weren’t for ALS, I wouldn’t have to choose between taking care of my husband and taking care of my kids! And that, my friends, is the hardest part of being the mom and the caregiver. I have to choose who comes first. On a daily basis there are times I have to choose to help my husband or one of our children first. I won’t say I am gripped with fear that I will choose wrong, because to know me is to know that I can make decisions and pretty much think they are always right, but I have times where I wonder if my ‘right’ decision was actually wrong. When I have a chance to sit and think, “Does Matt feel loved?”, “How can I make Matt’s life better?”, “Today I will not get angry at Matt because it’s not his fault. Does he know I don’t blame him for all this?”, “Are the boys going to be upset because I chose Matt?”, “How long did I ask JP to wait?”, “Does Kip get so angry because I don’t love on him enough?”, “Is Pax being crazy because he needs more attention?”, “How bad am I screwing up my kids?”. The kids and Matt are equally important. The little guys might not need me in the way Matt does, but that does not lessen their need. In their brains, they need mommy. Full stop. In reality, Matt probably needs me more. They do not always understand that reasoning.
I am not going to lie. We were circling the drain. Maybe even halfway in the drain looking back. I was physically and emotionally beyond my limit. I can’t say I always made the right decision on who to help first. I really really hope I didn’t do any lasting damage to my children’s psyche but we will have to wait and find out. Matt saw and recognized my struggle better than I ever could and in his infinite wisdom found our saving grace.

Her name is Adriele. After a couple fights, harsh words from both of us, tears and finally acceptance that getting help was not a sign of weakness in myself, I agreed to bring an au pair in to our home. (I know this is not a reality many families with ALS can afford. As I have said, we are extremely fortunate that Matt is a veteran and ALS is a service-related disease.) It might be the single most significant decision we made as a couple in our fight against ALS. Welcoming someone outside your family into your home might seem like a daunting choice but it was absolutely the right choice for us. We had a 6 month old, 4 year old and 6 year old. As I said, I was physically and emotionally unable to provide for them the way that they deserved. I have such respect and awe for single parents. It has to be the hardest thing to do. We were blessed to have Adriele in our home for 2 years – and are about to welcome our 2nd au pair in 2 weeks! Our boys love her like the family that she is to us. She was a mix between an older sister and a cousin. They tended to listen to her better than they listen to either Matt or me. She was another safe haven for them to land when Matt and I were not able to be there for them. It was also so comforting to know that our children were safe and loved if an ALS emergency came up.

We have the added bonus that Matt’s parents decided to relocate from Massachusetts to Pennsylvania 2 years ago. By the grace of God a contract fell through on a house 3 blocks from us. Deb and Jim were able to get it before it came back on the market. We are able to walk to their house now and it is awesome for the kids. Our quality of life has gotten so much better with them living close.
I urge anyone fighting this disease, or any difficult struggle, to let the people in their life step up. Rather, let them show up. As I write this, I realize I am being a bit of a hypocrite because I don’t always take the help offered and almost never ask. If you accept the help, a neighbor bringing over food for dinner, a friend taking your kid to sports practice, an in-law doing your laundry, you are not being a nuisance. I often find myself feeling like that and say “I got it” even when I don’t. It almost goes without fail that then I find myself overwhelmed, having to choose between Matt and the boys and then getting angry at both myself and them.

Accepting help is not a sign of weakness. This disease is difficult to manage on any day. When you add children in to the mix it takes on a different level of difficulty, young children especially. If you take on the role of your pALS caregiver it can be really hard to make the decision of who needs you more, your children or your person.
If you have the grace to admit that you are falling short, you don’t have to make the choice, everyone can come first. There will still be days where you find yourself lacking at both the role of parent and caregiver. There will also be days where you find you are a super hero and you did it all on your own. On the in between days you will find you have a group that loves your family and cares about you. That there are people willing to step in to the gap that this disease inevitably creates in a family. Accept those people, love those people, appreciate those people and they can make it so that there is no having to choose.

“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: