Strength does not come from what you can do, it comes from overcoming the things you once thought you couldn’t.”

Rikki Rogers

Ready for the no-holds-barred truth? No rose colored glasses. No painting a shiny pretty gloss on it. Living with ALS is an absolute nightmare I wouldn’t wish on even my worst enemy. It seems every day there is something ripping off a freshly started scab so the bleeding never stops. It’s the slow death of dreams, plans, friendships, lives. I’ve mentioned enough times that we are the fortunate ones. We have so many blessings from this disease – friendships, advocacy, experiences – but between those blessings is absolute devastation.

The strength it takes to wake up every day in a body that is failing you is incomprehensible. I know plenty of ALS patients who have eventually succumbed to that weight and set it aside. I am living with a man who takes that mountain, every day, and carries it in his immobile hands. Every day I see Matt unable to be the father he wants to be to our sons. The mixture of joy and pain in his eyes when the boys are playing sports, jumping on the trampoline, going to a campout, going for a walk. How he aches to give them a hug. I can’t tell you how many times in the 7 years since he was forced into his wheelchair his body has failed to let him be an active dad. Each time his body gives out is another small cut. The amount of emotional pain, along with the physical, that my husband has had to endure would cripple many a lesser man.

Our boys are absolute miracles. Every child is a miracle, obviously, but how God stitched these boys together inside me to make them ready for this life still amazes me. JP is the ultimate protector. He holds everything inside because he worries Matt and I will be sad if he shares his fears. However, late at night when I tuck him and lie with him to talk about the day, with the lights off, he feels safe to talk. He is afraid. He is afraid to lose his dad to ALS, that kids will make fun of Matt behind his back if he comes to events. JP checks every venue to make sure Matt can get there in his chair. He worries about Matt choking, his bipap breaking and Matt suffocating. If Matt is physically exhausted and needs extra time in bed, JP asks “Is Dad dying, Mom?” He has started helping with Matt more if I am busy around the house or with his younger brothers. On May 4, we went to hang out with friends while Matt went to bed. JP said he felt like a horrible son for leaving Matt since they both love Star Wars and it was May The Fourth. On the way over to our friends house I explained how Matt understands and isn’t upset that JP is a normal 12-year-old who wants to hang with his friends over his ol’ dad. My heart nearly shattered when JP said “Yea, but we aren’t going to get as much time with our dad as most kids. I’m a horrible son for leaving.”

Kip holds an immense amount of anger. His sense of right-and-wrong and his outrage when his version of “right” is wronged is something to behold. His rage almost rivals mine. Kip is our sports lover and it is not lost on him that with almost every team he is the one who can’t have a catch with his dad. His dad can’t ever be his coach. Regardless of that, Kip still seeks his father’s approval on every play. He searches the stands for Matt’s smile after a triple, a touchdown. While he is our naturally athletic child, he is the one that needs the most pushing. To reach his potential, he needs someone who can dedicate time and energy to his technique, who can push him past where he thinks he can go because he has so much left inside to give. Kip needs a dad who can whoop his butt when his sportsmanship suffers for his competitiveness. Both Matt and Kip know that Matt could be that dad is only his body didn’t limit him. The unfairness of this flies in the face of Kip’s sense of right-and-wrong.

Pax lives under the assumption that any attention is worth whatever he decides to do. He is a one-kid wrecking ball…on speed. I described Pax to his first grade teacher as “a whirling dervish”. In his life he has had to wait until I am done with Matt too many times to count. The whole reason we started down the au pair road was because I was doing an atrocious job of being a mom to a baby while a caregiver to a disabled husband. He recently started talking about “when Dad gets better” or “when Dad walks again”. His hopefulness and certainty of this outcome help us all stay positive. It’s a done deal for Pax, Matt is beating ALS. Pax corrects my driving when I take a turn too sharply or hit my brakes too hard and Matt is jostled in the back. He is his dad’s protector, moving people out of the way in public, fixing Matt’s hands, climbing in his lap to straighten his head. At 7 he takes care of his dad as best as he knows how. God, I hope one day Pax is proven right.

While the above are all observations from the front row, there is one perspective I obviously know intimately. The caregiver and wife. I put caregiver first because that is what ALS does to a marriage. Our marriage has had to take a backseat to this disease. And I’m angry about that. I will forever be a proponent of marrying someone you enjoy as a person and not basing your marriage on physical compatibility. Anger is my default emotion – ask Matt and my mom. I’m not sure that is the best personality to deal with this disease, but it does help that my anger goes hand-in-hand with my stubbornness. We were supposed to live the military lifestyle. Matt was going to be a rockstar pilot, we would live all over the world and expose our perfect children to different cultures, then settle down in the Northeast when Matt retired to civilian life and I would get to pursue a career/passion in the arts. We would have the dream marriage and be madly in love with everything that goes with that until we were old in rocking chairs on the porch of my parents house in OBX. It’s laughable and cry-able to think of that naive 23-year-old bride.

Living with ALS is waking up not knowing what the day has in store. Is Matt going to have energy and be up or is he going to need to spend the day in bed? It’s not letting too much hope creep in because the falls have become too painful. It’s fighting with agencies and corporations and politicians for the most common sense issues. It’s giving everything you have knowing it still is not going to be enough. And also knowing you have to get up the next day and do it all over again.

BUT…there is always a but…ALS is so much more than the bad. It is strangers showing up to help and celebrate. It’s friends who run to us instead of away when things are tough. It’s realizing at an earlier time than most who our family is, blood or not. It’s coaches from years ago jogging across the field to just say “Hi” and ask how our kids are doing, by name. It’s messages from social media saying our family is a bright spot in their day, or inspiration as their family is facing this too. It’s running marathons with the names of people who are a part of our friends’ stories repeated over and over in my mind. It’s our friend getting to the water park early and staking out the best shaded spot with the comfy recliner because that’s the best spot for Matt. It’s waking up in the morning, exhausted from not sleeping well, and looking at the love of my life beside me and knowing, without a shadow of a doubt, together we got this. The good that comes along does not make up for the bad that this disease brings, but it makes it easier to carry the load.

ALS is isolation, love, pain, joy, thankfulness and despair, all co-existing, at the same time, inside yourself.

Do you know what my favorite part of the game is? The opportunity to play.

Mike Singletary

Let me preface this whole spiel by saying I am talking about “pay-to-play” leagues. The ones where the parent pays a registration fee and their kid has a spot on a team. There has been a culture shift since I played sports as a young girl and teenager, and it’s not a good one.

I started playing soccer when I was around 5/6 years old. I fell in love with the game. My earliest memory of soccer is that one of my coaches was named Ursula. This was around the same time that Little Mermaid came out. I was both in awe and terrified of her. Not so terrified that I did not go on to play soccer competitively until I was 18 years old. There were seasons where I was on 3 teams at the same time. I loved the game.

I can remember some wonderful coaches from my days with “Magic”. (That was our team name for my intramural soccer team from our little area of Virginia Beach.) We had Coach Paschall for a couple years. He was tough but fair. I think he really made us into a great group of girls who played for the love of the game. Then my dad came along to coach…*insert groan here*. Obviously he was hardest on me, meanest to me, most unfair to me. HOWEVER, now out of my angsty years, my dad is one of the coaches I look to as an example on how to coach young kids in a way that fosters a love for a sport that keeps them playing, and then coming back to coach. When I would complain I was not getting enough playing time, or he was playing the weakest player on our team, or he was playing such-and-such at a position she is not good at, after a withering disapproved stare and “We will talk about this later” he explained to me why he coached that way. In my dad’s philosophy, EVERY player gets equal playing time regardless of their skill level. (or as equal as possible) He wanted every girl on that soccer pitch to come off the field feeling like she made a contribution to the team, her presence was valued, and she couldn’t wait until practice that week to get to play again. My dad made sure that every girl got a chance to start in multiple games. If you showed up to practice, paid attention, and worked hard, you could try a new position if you wanted. If you had a bad attitude, even if you were the most skilled player, the sidelines were where you were standing and cheering on your team. And you know what, we earned a lot of gold trophies with that team, even with the coach’s goal not being to win.

On the flip side of my dad and Coach Paschall, I also remember the coach that, after over a decade playing and dozens of teams, made me hate the game. All this coach cared about was what your last name was and if he was friends with your parents. One girl and I, who were not his family friends, went from being starters on the team to not even playing a second of the last game of the season. It was to the point where my parents said other parents were asking if we had gotten into trouble or were failing any classes and that is why we were benched – which made me at least feel better that someone other than my family thought it was unfair. After that season, I did not touch a soccer ball again for 3 years. Then I thought, “This is stupid, I love playing soccer!” So in college I started playing again with friends in a co-ed intramural league where the point was more to have fun and drink beer after the game than to get wins. It brought back why I loved playing this game so much.

After getting married and moving to Whidbey Island, I decided I wanted to try coaching. I started coaching a kindergarten girls team – that was…fun. They were the Blue Birds (after the parents and I fortunately steered them away from naming themselves the Blue Balls) and they were adorable. I was asked to help coach a U16 girls team during that same season. Those girls were also…fun. Both of them were great learning opportunities on how to deal with the players and the parents. The next season I was fortunate to coach a U10 girls team who were AMAZING. By far, favorite age group. They played hard, listened, knew a little bit about the sport already. Since then, I have coached some teams in Minneapolis and have started coaching Kip and Pax as they have decided to give soccer a go. All-in-all I have been coaching intramural soccer for over a decade, ages 5-16, boys and girls, so if anyone wants to explain to me about coaching sports to get results – which has happened with some male coaches – I also have a little bit of experience to back up my critiques. While some of the teams I coached have done really well and others not so much, I measure my success or failure as a coach if I see those same players back on the field the next season.

Youth sports, specifically intramural sports, are being ruined by parents and coaches. There, I said it. Parents are screaming at the officials from the sidelines, coaches are yelling in kids faces, people are being thrown off the field, kids are coming off the fields crying because their team did not win. What the heck happened to instilling a love of the game in children?! That is, quite literally, the point of intramural sports. Teach the kids the basics of the game, get them to play as a team, and enjoy whatever sport you are coaching. I have heard multiple dads say “Yea, we played really great and won that game.” I want to ask them, “So you laced up some cleats and went on the field to play against a bunch of 10-year-olds? I should hope you won!” Parents, you did not win, or lose, or even play. Your child did! That is one of the first ways I can tell if my kids coach is going to be great. If they refer to the team as “the boys” or “the girls” or “the team” and not talk about it in the first person, I know they get it. So so so many coaches do not get it anymore. And parents do not either. This is a game, this is a sport, these are kids that want to have fun and play and run. Winning is icing on the cake, but not the point of the meal.

JP was blessed to have a Little League coach that exemplified sportsmanship. Jim Clark has sons that are skilled baseball players. He probably works with them at home, but their natural talent is also apparent. Naturally, this led Jim, also a baseball lover, to get into coaching Little League. Jim coached in a way that values talent but awards sportsmanship. During one game, Jim’s son had a rough outing as a pitcher. I don’t remember what the stats were but I think there were a bunch of walks, like all pitchers have from time-to-time. Some of the kids on their team were visibly frustrated and angry with Jim’s son. When he was replaced as pitcher, his son slowly walked to the dugout, head hung low and tears in his eyes. In the dug out, Jim later told parents, there was only one kid on the team who came and sat next to his son to cheer him up. Saying things like, “It’s just a game. You know you are still a really good pitcher, right? You will do better next time, it’s only one inning.” That encouraging kid was not the best on the team. The next season, during the Opening Day Ceremony, Jim did not ask a star player to lead off the proceedings. He asked that encouraging little league-r to lead the league into a new spring season. Doubtless that encouragement from his past coach did more for his love of sport than any double-play or grand slam could ever.

Since we are in football season, I am going to equate this to our flag football league here in our slice of Bucks County. Before the season even began, we had an email from the league issuing a warning that yelling at officials or the other team, being generally unruly and being unsportsmanlike would earn you an ejection from the fields. After a second offense, your child would be removed from their team and your family would not be allowed to attend any flag football games. Our flag football league is K-8th. The littlest ones can’t tie their own shoes and the oldest can’t drive. What does it say about the prevalent atmosphere that the league has to issue this warning?

The officials in our league are in high school. Not legal adults. The amount of times I have seen grown adults screaming at the officials is embarrassing. To the point where the refs parents had to start coming to the game to defend their child who was making $25 to ref an 8-year-old flag football game. In our first year playing in the league (4 years ago) we were blessed with 2 great sets of coaches. JP ended up with 2 teenage kids who had aged out of the program. At first, us parents were very hesitant about having two kids coach our 3rd graders. It ended up being a fun season. Since they did not have kids on the team and didn’t have any relationship with us parents, the kids got to try a bunch of different positions and had a blast playing. They would do anything for those teenage coaches. They always came off the field laughing, win or lose. They also learned a bit of sportsmanship from those 2 coaches. Always hand the flag back to the player, never run your mouth on the field, always wear a mouth guard, let your coaches talk to the refs. That little team started out a joke and ended up making it to the championship game. Their female coach was very loud and could be obnoxious, but she was 15. As I mentioned, there were grown men and women screaming at her. To her credit, she never backed down.

Now, I will end this saga with, other than my dad, my Gold Standard of coaching. Kip’s coach that same flag season was Anthony Fittizzi. First, this team went undefeated for the season. That is not because they had unbelievable talent – though they had talent – or Anthony paid off the refs. I truly believe it is because Anthony taught the boys the way intramural sports are supposed to be coached, so those little first and second grade boys would give their hearts and souls on the field to make Coach proud. Not once that season did Anthony yell in the boys faces or at a ref. I’m not sure he ever raised his voice in anger at the boys. Anthony modeled the behavior he expected of his team – be disappointed, let your frustration be known respectfully, get on with the next play. He let multiple kids try their hand at quarterback, not only his kid. With the exception of a game or 2, every kid had a chance to run the ball or be a target for a throw. Every player came off the field during the game, even the most skilled. But the thing that sets Anthony apart, for me, is *George* (name changed since I didn’t get permission from his parents). I am still not sure how George got on a team of first and second graders when he was only 4 years old. Maybe his dad paid off the league? George’s flags practically dragged the ground he was so young. A lot of the time he wasn’t sure which way our team was trying to score or whose flags he should pull. George got the ball every game. His flag was usually pulled behind the line of scrimmage, but that did not stop Anthony from calling a play with him as the running back the next game. In the final game of the season, playing the Dolphins in a very close game to either win the championship or watch the undefeated season slip away, guess who still got the ball? Yep, George. And wouldn’t you know, it was his best run of the season, probably about 3 yards. I think Anthony celebrated those 3 yards more than the undefeated season. George also pulled a flag. And guess what else. George is now arguably one of the most skilled and hardest working players in his age group.

Unfortunately, since Anthony, we have not had similar experiences. Most of their coaches since then have played to win, not to instill a love of the game. It’s that way across the board in this league. The tackle kids, who know how to play, stay on the field the whole time while the less skilled and knowledgeable players are on the sidelines watching the action. Last season, the parents on one of the 3 teams were so embarrassing with their behavior towards the refs we usually sat apart from the team and left the field quickly after the game. Already this season an assistant coach has gotten in the faces and yelled at a bunch of first graders because they were “not paying attention to the game” after they had been on the sidelines over half the game. One coach on a different team was literally red in the face yelling at his players on the field who did not line up exactly how he wanted them to. Another of our boys asked his coach to try quarterback, his favorite position, but was told that was the coach’s son’s position so he wasn’t going to get a chance.

Maybe I was insulated as a player and did not notice the parents on the sidelines growing up. I do not remember screaming parents or coaches. I don’t remember coaches putting our worth as a team in winning. I know I loved to win but playing with my friends and playing with class was more important. When parents are having to bribe and force their kids to play, something is wrong. When kids are leaving the field crying after a loss or a missed play, something is wrong. If grown men think it’s appropriate to yell in first graders faces, something is wrong. When kids are leaving sports altogether, something is wrong.

As an intramural coach in most sports, you usually do not know what you are getting. The league assigns teams and sends out the rosters. You don’t know what background the kids are coming from. Maybe they are from a single-parent home and their mom or dad is out of the picture. Maybe dad is a workaholic and is hardly home but was a star high school athlete and rides their kid too hard. Maybe playing a sport is what makes their heart happy, even if they are awful at it. Maybe, like our boys, they have an involved dad but have never been able to have a game of catch with him; never even a high-five for a job well done. Maybe their parent berates them for a missed play and in their house winning games is what gives them value.

I believe that if you volunteer as an intramural coach you have a responsibility to every child that is on your team. You have the ability to either instill a love for the game or crush a kid. You can give these kids a joyful experience or you can make them feel like they aren’t worth the effort. As I was mansplained last weekend by the assistant coach that yelled in a foursome of 6- and 7-year-olds faces “I have been coaching for a while and I know how to get results”. I have a feeling I know the “results” that matter to that coach. I hope those plastic trophies, medals and souvenir t-shirts are really worth losing kids to the sport. That bragging around a fire pit with your Bud Light to the other coaches that your team has a winning record is worth making a child not want to play anymore. I know one 7-year-old who has already asked to leave his team and never play football again.

“Don’t think I did it for the fame, yea. I did it for love of the game, yea.”

Every person needs to take one day away.  A day in which one consciously separates the past from the future.  Jobs, family, employers, and friends can exist one day without any one of us, and if our egos permit us to confess, they could exist eternally in our absence.  Each person deserves a day away in which no problems are confronted, no solutions searched for.  Each of us needs to withdraw from the cares which will not withdraw from us.

Maya Angelou

If you know what show the header is from than you are most definitely a child who was raised in the 90s.

So…how is everyone doing? It’s been a hot minute…or years…since either Matt or I posted on here, right? Quick Cliff Notes for anyone who is still reading this – Matt is still alive and thriving, the boys are busier than ever, I am still working towards finishing my Horticulture schooling.

The longer notes…Matt is doing really well. He has been on a liquid diet for almost 3 years and was sooo over it. I did a juice cleanse for 3 days once and resorted to chewing ice chips just to chew something! The will of that man to go 3 years on liquids, oompf. I am happy to report that he screwed up his courage to try to eat something and didn’t choke in the process. He now mostly eats soft and/or slimy foods, but still solid foods. The only thing we can attribute this to is the Grace of God. Matt has not started any new medications, he hasn’t started any new exercises. We recently took a trip to the Padre Pio shrine near our home and met with a priest who spoke in tongues and prayed over Matt. Something worked because any slight improvement in ALS is rare and comes from the one most benevolent God.

Matt continues to ride his recumbent bike at least 4x a week. He gets strapped in there pretty good. He has feet straps, hand straps, and straps to keep his knees from collapsing in and banging his shins against the central column. The weather has definitely been “April showers” so far this month so he has not gotten outside as much as he likes, but the boys sports do get us all out, rain or shine.

Our biggest hurdle recently was finding a caregiver. We are going on 7 years with me being Matt’s primary caregiver. That takes a toll on both our mental and physical capabilities, as well as a strain on our marriage. Good thing we are both stupidly stubborn and love each other with wild abandon, but we want better for ourselves and our children. Unfortunately, we learned the hard way that using an agency for staffing wasn’t fitting the bill. We had no control over who was sent out and a couple times had to send the person away the moment they got here because there was no way they would be able to adequately care for Matt. Who knew a search for a good caregiver we can trust would take years? I’m sure some of our friends in the community know this but we did not. We have had people start then quit multiple times…and sadly not because of us, I think. They had major life events happen, they had to move, they wanted more work than Matt needs, so many reasons that would always squarely put us back at the starting line. So I took a year off school to focus full-time on caring for Matt and the boys and to work with our support system to find someone(s) who could come alongside our family. Friends, as of right now we have 2 beautiful, loving caregivers who are here to provide for Matt every day of the week except Sunday! Hopefully I am not putting the cart before the horse because they just started this week, but after almost 9 weeks of no outside help, the prospect of 6 days a week is AMAZING.

The boys have been beyond busy. All of them have varying interests that always overlap. For the first time, this season, we are fortunate to have flag football and soccer practices at the same complex so one driver can knock out 2 events at the same time. Our oldest has found a love for jiu-jitsu. JP started about a year and a half ago and has really thrived. He loves the structure and the team and the respect that comes along with this sport. We have traveled for some tournaments and with each one we can see his confidence grow and his skills improve. Far and above anything else though, JP loves Boy Scouts. I know it is a tough one for Matt because he wants to be able to do ALL the Scout things with JP, but it is great to see our firstborn have something he can share with his dad. Matt was an Eagle Scout and JP is already planning his path there too. I asked him the other day what was his favorite extracurricular activity and without hesitation he said “scouts”. The troop is active and welcoming and JP has his “tribe” there which makes us so happy that he has found a place where he fits.

Kip continues to love any and every sport. I swear he could get into golf, tennis, badminton, anything that involves competition and this kid is in! He started soccer a couple years ago. This mama was SO HAPPY! Matt has always told the boys that soccer is a sport only girls play. I did play soccer, for many a year, and was dismayed that none of our boys were going to play. Fortunately, Kip had some friends, whose dads did not have such strong opinions, and they convinced Kip to give it a try. I love being able to coach him in a sport that I have so much love for, even if he is not always thrilled and says I am too hard on him. Football continues to be his main love. For his 10th birthday just he and I went to the Eagles home opener this past fall. It was against the Vikings – he was born in Minneapolis – so it was extra special. It was a night neither of us will forget…for the good and the bad. (Yes, Eagles fans are obnoxious, but the club is amazing and made sure Kip felt extra special for his birthday.) He still holds fast to his dream to play for Georgia before going pro.

Pax is still a whirling dervish. The boy can talk nonstop, eat nonstop, play nonstop and still have energy for more. He crashes hard at night when he finally quiets down and sits still. He has such a big heart for his friends and when he loves he loves with his everything. Pax might be our soccer player. He is all over the field so it will be interesting if as he grows we can channel that into an actual skill position. I also get to coach his team, but at this age it’s more organized chaos than soccer. Pax’s biggest flex is that he is completely unfazed by anyone who is “different”. He is our only child who won’t have any memory of Matt as a “regular dad”. I got a call from school today – always fear-inducing – letting me know that the autistic support staff asked that Pax be allowed to participate in an outing with the autistic children next week. As the staff works to teach kids who learn differently about how to interact in public, they recognized Pax always includes these kids in activities at school and doesn’t treat them differently than he does the other children in his classroom. I guess there are silver linings to this disease.

Lastly, me! I have loved going to Temple and leaning in to my passion for plants. Matt got me a hobby greenhouse for our anniversary and this year I hope to fill it with plants and vegetables and flowers. I have one spring semester left until I get my Associate’s of Horticulture, which I believe will nicely compliment my Bachelor’s of Fine Art from Tech, so I can work in some sort of landscape design space. Ultimately, I would love to partner with or found a non-profit that provides green healing spaces to families who have been touched by terminal illness, but baby steps. For the next year my focus is to have in place an awesome support team for Matt where he feels safe and happy so we can enjoy being a family and can pursue our passions. Also the boys – puberty is already starting! God granted me boys because I’m not sure I would survive a girl adolescence, especially if she would have been anything like me. These 2 older guys keep me on my toes and are turning my hair grey faster than I care to admit.

To that end, I was led to reboot this blog in hopes that I can get some “stuff” out that also helps other people. There have been a lot of times as we have waded through these past couple years where I have simply felt alone. Not that I don’t have friends here, or my own support with family, but that no one else is doing what I am doing. Experiencing what I am experiencing. Even Matt, he has his own unique experience with this path that is not the same as mine. It can be an isolating place to be. So, my hope is that now that I have gotten the updates out of the way, I can focus on sharing in a way that will give aid and purpose to anyone else who is in a similar boat. And if you have sent a contact in the past few years and I have not gotten back to you, I am deeply sorry. Life happened and this blog did not fit in that life. I hope to remedy that soon.

Mistakes and pressure are inevitable; the secret to getting past them is to stay calm.

Travis Bradberry

Y’all, I did a thing. I applied to Temple University and I got in. For the Fall Term. Like in 3 months I will be in college again.

Matt has been bugging me for years to go back to school for another degree. He was thinking Business. However, I don’t do well with numbers and I don’t really have any desire to own my own business after seeing how stressed it has made my mom with her small business over the years. Both seem pretty integral to running a business.
What did I want to do? What do I love to do? Because it has to be something I love to do in order to take me away from the boys and from Matt. If you have read any previous posts you might now know that I love the outdoors and I love gardening. So, I did what most people would do. I Googled “Master Gardener classes”. I looked in to becoming a Master Gardener, but for Bucks County the course for that isn’t offered for another 2 years – thanks Covid. I looked at Associate’s Degrees at the local community college. Nothing. That lead me to “Horticulture”. And wouldn’t you know it – Temple University had an Associate’s Degree in Horticulture. Better yet, their Horticulture program was not on their main campus in Philly but at their campus in Ambler, which is 25 minutes from our house! Woohoo. I set up an interview to discuss the program. I got all my questions answered and decided, why not? It’s $55 to apply. Go for it!
I did. And in typical “me” fashion, in the drop down menu where I choose what degree I was interested in, I came across “Landscape Architecture”. Hmm, that sounds interesting. Read some more about it, “hmm, that sounds like exactly what I want to do.” So, long story short, I have escalated from a ONE COURSE, 50 volunteer hour certification of Master Gardener to a Bachelor of Science in Landscape Architecture. From a weekend class and then some to a 4 year degree. Yep, I did that all on my own people. I’m crazy.

Now, I think I have mentioned this before. I love my family very, very much. I think I’m a pretty alright mom. I do yell at the boys more than I like. I try to be there for them and love on them as much as they will let me. I want them to know that they are by far the most important things in my life. And I’m pretty decent at taking care of Matt. I also try to make him feel that he is the most important thing in my life. That his happiness and comfort and safety is up there on the daily.
But, the boys are getting older and needing me less. And I don’t want to get on in life and look back and say “I did great taking care of my guys, but I never did anything that really sparked life in me.” That isn’t to say that being a wife/mom/caregiver doesn’t bring me fulfillment, but it also doesn’t spark a passion in me. I’ve never been drawn to the medical fields so being a caregiver is more because I love Matt more than words can accurately describe than because it is something I want to do.
And I feel a little (lot) selfish for doing this thing for myself. It’s going to put a lot of strain on our daily life as a family. But Matt convinced me to do it. It’s not something I think I would have done if it wasn’t for him pushing me. I had to convince myself also because I already have a degree I didn’t really do a ton with. I used it for maybe 2 years. As a Navy pilot’s wife there was not a whole lot of job opportunities at the bases we were stationed. Because I don’t want to put this strain on my family if it’s something I won’t use. Something I will wake up every day and be excited to go to work to do. Something that has potential in our area for the long term.
Sooooo, if anyone is in the greater Bucks County area and knows of a top notch home aid that is looking for some hours in the fall, we have got a job for them. We are going to see if I thrive under pressure!

“Government’s first duty is to protect the people, not run their lives.”

Ronald Reagan

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On to ALS enemy #2 – U.S. Food and Drug Administration. So much could be said about this bureaucratic quagmire. It’s a behemoth of an organization that is so confusing and has an unbelievable amount of red tape. It seems, from the outside, they are protecting us to death. But pALS are already dying so that doesn’t make any sense.
In 2019 we had an in-person meeting with some of the officials that were instrumental in the Nurown trial. Honestly, I had a hard time staying awake. I feel like it started off well. Through some contacts we had in Congress, the acting head of the FDA joined the meeting, but left about 5 minutes in. From there I felt it went downhill. One member of the FDA in particular was incredibly condescending. Another treated the group as if we were his children, not in a condescending way, more in a placating way. Once I was insulted for the group I tuned out. Through these 2 individuals I feel like we can completely sum up the basis of the problem with the FDA in how it approaches ALS and our community.

For starters, they absolutely believe they know better than us when it comes to this disease. I do not feel like they honor or respect our opinions or input. And isn’t that crazy?! We are the ones living this hell. We are the ones with firsthand knowledge of what is going on. And with my husband there – freakish smart guy – there are people in the community who know and understand the science behind the disease as well. In fact, I would venture to say that the ALS community as a whole is very versed and informed on the science behind the disease. So to treat us like we are somehow less than them is rude, to put it nicely. Then we come to the paternal nature. Like we are petulant children throwing a hissy fit over a drug. They try to placate us with words but no action. I don’t know how long they promised the Guidance Document for ALS Trials before they finally published it. It took Matt saying he was going to starve himself for them to publish 12 pages of guidance. I think it was over 5 years it took them to review and publish the document. That’s the equivalent of a parent saying “2 minutes” when we know it is really going to be 10.
The community has asked for more modern trial design. Did you know that the trial requirements for an ALS treatment are the same for an acne treatment? In what world does that make any sense? A terminal illness is treated the same way as a cosmetic inconvenience. If that doesn’t blow your mind you are special. The placebo arm of a trial is somewhat cruel when it comes to a terminal illness. In regards to NurOwn®, the procedure involves taking a bone marrow aspiration then injecting manufactured stem cells into the spinal fluid. It’s not a comfortable procedure. Half the trial participants essentially got sugar water – that’s cruel.

Another problem with the FDA is conflict of interest. Panelists have to disclose any conflicts when they are selected to review a drug, but there are loopholes, like in everything. While they might not get incentives up front, a couple years down the road they might get some kickbacks. In the way of speaker fees, donations to their research, etc. The larger pharma companies can afford to incentivize panelists. Unfortunately, small companies are the ones researching ALS. These companies cannot provide the same sort of future bonuses that big pharma can nor do I think they should for ethical reasons. Big pharma can also make it worthwhile for panelists to not let the small guys get a leg up. I would hate to say that corporate pharma is keeping a treatment from market, but I will imply it. Big corporations do not like the little guys succeeding, in any market. A long read but check out this article giving real numbers to this issue: Hidden Conflicts?
Obviously the FDA is broken in how it approaches ALS. It is also not helping many other orphan diseases. The market for a treatment is not as lucrative for these diseases. There are not enough people dying and it is not a communicable disease. The FDA needs to stop protecting us to death. They need to allow innovation so we can save our pALS and find an end to this disease.

“People can tell you to keep your mouth shut, but that doesn’t stop you from having your own opinion.”

Anne Frank

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PSA: This is my opinion. Caitlin’s opinion. Matt has advised me otherwise, but a lot of times I don’t follow his advice.

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My feelings about ALSA. Let me preface this – I am talking about National ALSA. In my experience, local chapters are far more in tune with the community and, ours in particular, are wonderful organizations. Some have been so disgusted with National that they have tried to branch off from the organization, showing they care for the patients and their families exponentially more than National cares. If you missed that jab, let me put it more clearly. I do not believe National ALSA truly cares about the patients it is supposed to represent. I do not think National ALSA wants a cure for ALS. Part of the problem comes from the contradiction of any non-profit formed to help cure a terminal illness. If they are successful in their mission, they have essentially worked themself out of a job. However, on the flip side, imagine how in demand a board would be if they actually worked their butts off and were instrumental in curing a terminal illness! If they did not focus more on making their community comfortable as it died.

Because that’s another problem with ALS. Our pALS die too fast. The memory is short. The ones fighting now might not be around in 2 or 5 or 10 years to keep fighting and making a ruckus. Our loved ones are comfortable as they die, but that is not what our community wants. Our community wants a cure. And we want an organization that has the backbone to go out on a limb and fund the underdogs who are searching for a cure. Because you can bet our organization has the funds, but it most certainly lacks a backbone.

Take the above for example on what I mean. In 2017, Total Revenue versus Grants and Similar Amounts Paid was pretty close to even, off by $2.5M. In 2018, the difference between the two came close to $10M while the salaries increased by $500K. I do not have the time or energy to go searching for the 2019 tax returns because ALSA now makes it difficult to find anything relating to how they are spending their money, but I am guessing it doesn’t look too good for them. For the LIFE OF ME, I can not understand why an organization refused to help fund a Phase 3 Trial for an ALS therapy – the first one of that magnitude and excitement. It literally escapes me. If your mission is to find a cure, help fund a promising therapy. Seems like a no-brainer to me.
Recently, if you follow any ALS advocate on Facebook, there was a picture circulating of a very nice lake house. Said lake house was purchased as a second (maybe third?) home by the CEO of ALSA. This purchase raised quite the hub-bub in the community by its price tag. It’s a beautiful home, lake front, a sprawling 4,800+ home perfect for AirBnB. It was purchased for close to $900K, as a vacation home. I don’t know if we can all agree, but I will say it is in poor taste if you represent a community that is fighting a terminal disease that lays waste to families monetary and emotional resources, that many in the community are unable to sustain life because of the cost – to then buy a home with such a price tag as a vacation home. But hey, maybe it’s wheelchair accessible.

I believe one of the biggest problems is that the big wigs at ALSA have honestly lost touch with the community. Barb Newhouse, CEO of ALSA prior to this one, met with my husband, myself and other pALS in our Congressman’s office, without any handlers or staff, and we felt like she listened to our voices. I can not imagine that happening in the current climate. When the CEO of a non-profit makes over $350K a year in salary, not including bonuses, yet the organization has nothing meaningful to provide for its efforts, there is a serious disconnect. During one phone conversation we had with their media guy, back when we started in advocacy and Right To Try, I saw red. We were asking ALSA to help us with RTT and they were refusing. This particular person explained to the group that he understood. He had friends he made while working at ALSA who had died from ALS so he understood our position. Absolutely, positively, unequivocally I saw red. There is no way you can understand ALS unless you live it day-in-and-day-out. At the end of the day, this guy got to go home and leave ALS at his friends house. And the leadership board at ALSA gets to leave ALS at the office. They do not wake up in the middle of the night with their spouse who can’t breathe. They do not have to take their family member to the ER with yet another concussion from falling. They do not have to watch their spouses body deteriorate in front of them, daily, with no options to stop it. They get lake houses. They get “work trips” to Australia. They get expense accounts. It should not be an us vs. them thing, but that is what it has turned into. They do not get it. National ALSA should be ashamed and apologetic. They should do better. They should be the ones calling us asking us to help them get legislation through that helps pALS.

Our mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

The ALS Association

Instead, ALSA has repeatedly asked for pALS to advocate for the National ALS Registry – something that ALSA gets a no contest grant for each year from the federal government. It asks pALS to advocate for better health care. It asks them to do annual walks that, wait for it……….raises funds for itself! (We don’t even need to go into the fact that their biggest annual fundraiser are walks, for people who can’t walk. Couldn’t think of ANYTHING better?) National ALSA consistently asks pALS for things that benefit the organization but never gives the community what it wants. If ALSA had produced anything meaningful to the ALS landscape that would be one thing. But sadly it has not. It helps our pALS be more comfortable as they die. Gives them equipment to help with their progressively failing bodies. Provides clinics that they go to every 3 months to learn what parts of their bodies are giving out fastest.
Since its founding in 1985 only 2 pharmaceuticals have been approved as treatments in ALS by the FDA. The first is Riluzole, approved in 1995. Admittedly a lot of pALS do not take this because the side effects are not worth the abysmal extra times it gives the patient. The second is Radicava, approved in 2017. Radicava is supposed to slow the progression of physical loss, but it is not fully effective – post approval studies show no meaningful impact – and is an injection so not a lot of patients choose to submit to this treatment either.
So, in 36 years, an organization that has as its opening to their mission statement “to discover treatments and a cure”, has nil to provide the community in that department. An organization that received an ungodly amount of money from a viral fundraising campaign brought about by 2 pALS in the community – not the ALSA fundraising arm – has nothing meaningful to provide to the community. Pete and Pat were so excited about the prospects and hope brought about by the Ice Bucket Challenge. Sadly, these two men have fallen victim to ALS whilst ALSA still has millions in the bank. ALSA has failed us. ALSA continues to fail us.

I want to be like a kid and scream and throw a tantrum. I want our pALS to be heard. I want our pALS to be seen. I want ALSA to understand they are royally f’ing up. I don’t want to listen to my husband on another Zoom call with other pALS trying to figure out a way to save their own lives. There should be no Matthew McConaughey Dallas Buyers’ Club ideas floating around. These people should be with their families enjoying whatever time they have left while ALSA is doing the heavy lifting. These pALS should be the ones enjoying sunsets on the upper deck of a private lake house while ALSA gets the FDA to expedite therapies. It’s outrageous, infuriating, mind-boggling and heartbreaking. We have to find a way to fill the hole that ALSA has created when it abandoned this community. Because that is what it has done. ALSA has abandoned our community to serve itself and it’s time we did something about it.

“Immortality is to live your life doing good things, and leaving your mark behind.”

Brandon Lee

I need some help. I’m at a loss. I have an idea and no knowledge of how to make it a reality.

For those of you who do not know Matt or me that well, we love plants. Matt is partial to trees, I like the pretty plants. The previous owners of our home had cleared out almost all the trees and plants from the property. They were old, didn’t want to do the maintenance. Over the 7 years we have owned this home we have put in thousands of dollars of plants. Because we are “cheap” we also put in countless of hours of sweat equity and an almost trip to the ER with planting everything. (A 135lb girl is no match for a power auger and the shale layer in our backyard. Definitely a 2-person job.) It is not really a joke when Matt says he wants his ashes spread among “his trees” in our backyard when his number is called.

I get so much joy out of planning our annual spring planting and our vegetable garden that I am seriously looking in to going back to school to get some sort of degree or certificate in landscape design or horticulture. As the boys are getting older and need me less, I am trying to find something to bring fulfillment to my life outside of caring for my boys.

So now comes my idea. I would absolutely love to plan gardens for pALS and/or cALS and install them. Come to their house and give their property some needed outdoor maintenance. Install community gardens in places that could use a little love. What I am going for is taking something Matt loves – trees – and using it to create something I love – gardens – to bring happiness to other people. Matt and I both love the idea of creating something that will be around long after we are gone. You could say the idea was somewhat inspired by our trip to the Big Tree forests in California in October. Those behemoths have been around for centuries.

However, I have absolutely no idea if it is something worthwhile. And if it is, how to start. Would I have to start a non-profit? How do I find people and places that would benefit and want this? Is it a stupid idea or played out already?
This mommy and caregiver has been feeling recently like I want to do something more with my life than just take care of other people. I want to do something that takes care of me. That lights a fire under me. That helps me feel worthwhile and is something for me. Anyone with any insight or opinions is welcome to share. Please!