Who comes first?

“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.