Today is the 5 year anniversary of the day our lives would be changed forever. When Liam was first given the diagnosis of LGMD the future was very scary, and unwelcoming. I was blind to what life would look like with a child whose body would constantly be changing, needing more assistance, and failing him.

I was terrified of my own weaknesses. I honestly didn’t know if I would be up for the task of entering into this new world that was not designed for my child. I have had many days where I still question my ability to do what is best, sometimes I just get by. Other days I hold on tight and remember that tomorrow is not going to get easier if I don’t learn to problem solve now. 

We measure life is steps. How many steps will it be before Liam can take a break? How many steps before his legs start to sway, and he shows his fatigue? Where are the steps that will unfortunately block easy access to the fun or necessary movements in life? What steps do we need to make to ensure that his care givers know how to keep him safe? Step by step we do our best to prepare for the next step.

A painful reality, but also benefit, of LGMD is that we are slowly introduced to our new normal. We grieve, problem solve, and then fight. We have been given a view of what the future might look like and this has given us even more focus on what we need to do to be prepared for Liam’s needs. Mark and I will do our best to stay ahead of Liam’s extra needs and we hope that we meet them with optimism and hope.

Five years ago, our future changed. My heart still hurts every day for the uncertainty of Liam’s future and the pain of his heartbreaks. Most importantly, my heart wishes for the courage that I know I will need in order to be the best mom for him. The mom that Liam deserves.

Liam is doing very well these days. We met with his team of doctors in late September and they said Liam is doing very well. His arms and ankles are contracting more every day, but we still stay vigilant with his nightly stretches to combat these changes.

Liam is thriving in second grade as he devours books and is making his own comic books each afternoon when he returns home. He particularly loves Captain Underpants. I’m a firm believer that fart jokes are hilarious, but even I get tired of an eight year old boy’s noise making. Kids are gross.

This year has been action-packed with Cub Scout fun. Mark and Liam love their time with their Pack and all the camping and teamwork involved. The buddies that he has made in this group are a sweet as they come!

Liam riding on Mark’s back as they went for a hike with his cub scout troop.

Liam’s wheelchairs have become a necessary part of his day to day life. There are a few outings where we know that in a pinch we could carry him, but with his increasing size we are very purposeful with planning to bring the chair. I’m just not strong enough for what he needs.

Liam is becoming increasingly responsible, and his work load has increased at home. He is now cleaning his monkey cage–I mean bathroom–all on his own. He also enjoys using the leaf blower to clean the deck. The leaf blower is heavy and requires some strength to control, and our boy is amazing and finds a way to get the job done despite these challenges.

I recently attended a discussion at our local library regarding ‘overparenting’. I find myself working particularly hard on reflecting on how I can ensure Liam is independent while still helping him when the day is just too hard. My day with my son is a balancing act. I know all parents feel this delicate dance must happen, but I know my load is a lot heavier that most.

Liam racing around while we wait for his school bus.

Liam enjoying the sun and the sand while on vacation in Oak Island, North Carolina.

On a final note, as a Public Service Announcement, please stop being so clumsy around what you perceive as different. Yes, Liam uses a wheelchair and has physical limitations, but if that is the only thing you think about when you speak with him, then you are missing out on a hilarious kid. If you see a person out in public that is in a chair, don’t assume they are without a voice or opinion. Please don’t ever touch a person’s wheelchair without their expressed permission; this is unwanted contact and can be dangerous. Also, if you are a helper, offer a comment such as “I’m here if you need help with anything”. It speaks volumes. Also, please don’t speak with an elevated volume with Liam. He can hear you just fine and thinks you are insane when you scream while having a conversation.

Thanks for your ongoing support and kindness. Our next challenge is that our family is saving up to buy a home that can easily be modified to meet Liam’s needs. Liam wants a three level house with tons of stairs, but my gut instinct tells me that would be a poor choice!

Liam has always been responsible for contributing in the household chores. He is responsible for keeping his room clean, helping to clean up the playroom and odd jobs around the house. This may seem pretty standard to most, and honestly, it is standard here too. We just require a little more planning. Since bending over to pick up items is really hard we have purchased a grasping wand. Liam scoots around the room, puts everything in a bin and then I pick up the bin and put it on a table so that he can put things away from that point. It eliminates the challenge and allows him to succeed and be a helper. 

Liam has been asking for a way to earn money so that he can collect even more pokemon cards to his collection. His summer job is to do the unpleasant task of picking up dog poop. We have a big dog, so Liam has plenty of work! We purchased a pooper scooper that Liam can use without needing to bend over. I can see how proud Liam is of himself when he completes his work week and puts his crisp five dollar bill in his piggy bank. Hard earned cash, for him to spend, save or give as he pleases.

Mark and I expect him to know that he will work. He will be a helper. He will find a way to get things done. With a little problem solving, a bit more planning and some helpful tools he can do anything he wants!

Liam, Henry and Max at the Cincinnati Museum Center field trip with their first grade class.

Liam has had his powerchair for sometime now. He proved to be a very precise driver, with mature spacial sense. His school principal even remarked on how impressed he was with Liam’s driving skills. Liam also recognizes that this tool doesn’t solve all his problems. It’s bulky, the world is not set up for wheels, and our home is not going to cut it.

Liam at COSI

This mother now lives with a new sense of guilt. When I imagine a vacation away from our familiar spots all I see are barriers that I need to overcome so that my child can simply live. I am up for the challenge, but I also resent my younger self for never seeing these issues. I didn’t hold enough doors open for people and I didn’t speak up when a building was inaccessible.

I also feel very proud that I am far more intentional about my hours and days. When I see something, I say something. I have a thousand reasons to be mad at what hardships Liam and our family have been given. Yet, I feel happier and more comfortable in the past year than I ever have in my life. This shift in perspective has been life changing and I’m proud of myself.

Liam and Aiden on their last day of 1st grade.

A common issue in the MD community is that children stop getting invited to birthday parties, or over for playdates around this age. People don’t know what children with MD are capable of, so they assume that parties including trampolines, pools or race tracks are off limits. I’m thankful for the thought that parents of Liam’s friends put into Liam’s well being. They call ahead of time to be sure that accommodations will work. They check out their own home and tell me of any issues that may arise. They keep including him. I hope this continues for many years to come, because we will always find a way to include Liam in any activity.

I’m sure some of you, our devoted followers, wonder how we discuss Muscular Dystrophy with Liam.

We approach this conversation much the same way you might discuss sex with a child. You answer their questions, but don’t go further than what they ask. When they are ready for information they will show you.

With Muscular Dystrophy we talk about the ‘Building Blocks’ that we each have. We tell him that everyone has these building blocks known as DNA. Each block makes us unique. It gives Mommy her crazy laugh, it gives Lydia her brilliant personality, it gives Liam his amazing sense of humor and it gives Daddy his computer wiz skills.

We explain that with MD something tweeked when he was first growing. There was nothing that anyone did to cause this to happen. It was not part of a greater plan. No one did anything wrong. It just happens.

Everyone has a building block that they might wish was different, or better, but we do what we can with what he are given. We celebrate the differences, and appreciate the challenges that each person might experience with their Building Blocks.

Sometimes I wonder if things would be harder for him if he had been given a different type of challenge. The world sees his disability, it is right in front of you. People may not know what it feels like to have limited mobility, but they can relate, to a degree. People are also very receptive to his needs. They pull chairs out of the way and open doors. The really good ones speak up when they see an injustice or an inaccessible building, these people are everywhere and I’m so grateful.

There are times when Liam’s questions are met with silence. I am thinking.  I am careful to not pass my own assumptions about his disability on to him. There may be times that he may be seen as less than, and I don’t want to be the one to do that to him. Liam will be the one to decide how this disease will contribute to his life, not the other way around.

I sat quietly and watched.

I watched as my son, with the body of a boy void of all baby fat, played quietly in the bathtub. I promised myself that I would not rush him, I would wait until he was ready to get out. I would wait until the water became cold and the bubbles fizzed away. Liam would have the chance to really feel the warm water and be given opportunity to create a statue of a dog using only the soap bubbles around him. He whispered powerful plot lines, and gave each character a dramatic voice as they battled with the SDS Pizza cup used to wash away it’s enemies. The sea crashed around his slender legs and slammed into the walls of this tub that was once the size of an ocean to my sweet baby.

As the minutes moved on Liam realized that his bath time was truly his. It was then that he started to giggle. His shoulders relaxed and his play went deeper. He gleefully played for over an hour.

Liam’s life has given me a perspective that I could have never gained on my own. He has given me the purpose to slow down, and be mindful of my moments. Every day I fall deeper and deeper in love with my sensitive, creative and sweet little boy.

I grew up with two older brothers, and I always imagined that I would have three children in the family that I created. Two big brothers and a baby sister. I always liked having big brothers who would keep me in line, tease me relentlessly and love me unconditionally. This was my idea of a family.

When Mark and I started our family and learned that our first child was a boy, it was all going to my master plan. Liam was given the middle name Andrew after my oldest brother. They share the same bold laugh, nervous energy and nerdy hobbies. When we learned we were expecting our second child I thought for sure we would have a saecond son and name him Alec Michael after my middle brother Mike. Lydia surprised us and gave us the gift of a daughter and to add one more amazing woman to this world. I was shocked, thrilled and excited for this curve ball to my ‘dream’.

Daddy and Liam (age 7)

Our third child was born on December 1st, just a few short weeks after Lydia’s birth. This third child would be the most challenging of all.

One of my many tools for self preservation is that I have accepted that I have three children. Liam, Lydia and Muscular Dystrophy.

Liam, age 5, Lydia age 2.

Liam likes to read, play with Legos, write notes to friends and make any item into a sword.

Lydia likes fairies, the movie Shrek, and playing with my pony tail.

Muscular Dystrophy requires a lot more attention and heartache. MD means visits to doctors, physical therapists, meeting with teams of teachers, and fighting with insurance companies. MD wakes me up at night, and doesn’t give me sweet baby skin to snuggle, but instead requires me to be on my game. I can’t let MD get away with anything, and I can’t relax with MD.

Mommy and Lydia (age 4)

I have a favorite child. It’s Liam when he snuggles me goodnight. It’s Lydia when she helps her big brother off the floor. My third child is a pain in the butt, but it’s here to stay.

Going on a vacation with small children takes a lot of planning, flexibility and patience. Travel is something that I see as a requirement for life. The world becomes a little bit smaller with each passing mile. New people and new places show you that we are all the same when it comes down to it.

Our family jumped into our new van and took a quick road trip to St. Louis for a Father’s Day getaway. After reading a hand full of blogs about ‘Family Friendly’ activities in STL, I stumbled across the City Museum. This old factory had been transformed into a giant playplace complete with a 6 story slide and plenty of tunnels to crawl through. My first thought was that Liam would never be able to physically handle this place. My second thought was, what if this was the summer to do it. His last chance. Take him now before it is too late.

We changed gears and decided to stick to the basic kid friendly places such as the Science Museum, The Magic House and The Arch (with a brewery thrown in the mix for Mom and Dad!)

On our way to the top of The Arch!

The Arch- The Gateway to the West. Every Midwest family should take a trip here, right? It’s a wonderful experience with the thrill of packing our family into a tiny egg to sway and clank your way to the top of this gently swaying architectural beauty. It’s not available to everyone though. The website stated “not wheelchair accessible”. Welp, this is our year. If Liam will ever have the experience of this simple, but delightful experience, we better do it now. I was so thrilled that the good people working at the Arch went above and beyond to minimize the steps Liam would need to tackle. I need my boy to see the good in people, and we made sure to point out the kindness and care these employees put into making his day a little easier.

Everywhere we went in this modest city we were greeted by kindness, and compassion. People spoke directly to our children with stunning eye contact while they held doors wide open and moved chairs out of the way. They smiled extra wide when they saw Liam in his chair. I’ve always thought myself to be pretty accurate when reading body language. The most common thing that I see now, with my sweet boy rolling next to me, is discomfort. People want to show that they are accepting, and understanding but don’t know how to do it. Sometimes they over do it, but I’ll take that attitude any day over the ugly stuff.

Raising a child with a degenerative disease means performing a very delicate balancing act. Wait to long, you miss out. Act now, and push things and it makes the disease worse. In my mind I’ve flirting with going into extreme debt and taking Liam around the world now. Taking him to Rome and carrying him over the bumpy streets, flying anywhere with only his zippy light weight chair to navigate instead of his heavy, wide and bulky power chair. Taking him on a hike through the Amazon rainforest with his tiny body resting on my back. I’m strong enough now, but he’s only getting heavier. I can’t do it forever.

St. Louis was perfect for our family. Two days, a welcoming community and a new van to get us around. It was a wonderful mini vacation and I’m so glad we went.

Mike, Betsy and Andy with homemade baby dolls.

The only traumatic experience of my childhood, my mother requiring me to wear underwear under my leotard. The horror!!

I may have rose colored glasses about my childhood, but I was pretty lucky. My parents adored each other, my brothers and I were healthy, active and all around good kids. We had an army of mothers, that we referred to as the “mommy collaborative”, who protected us and watched over us as their own. I had smart, silly and well behaved friends who had big goals in life and we each supported each other to reach those goals. We never went without, but also learned that things aren’t just handed to you. I had to pick up dog poop, clean the toilets and make sure my clothes made it into the washer. We traveled the country to see family members, who shared our bold laughs and raunchy humor. I’m so grateful.

My parents were (and are) amazing. They let us make our own mistakes, but provided us with a pretty stellar “moral compass”. My brothers and I didn’t want to disappoint them. I remember a time as a preteen when I didn’t tell my mom where I was going and I stayed out past dark. I’m not sure I ever received a “punishment”. I do know that I cried myself to sleep that night just knowing that I had scared my mom and that I never wanted her to feel that way again.

Countless hours of playtime for “the boys and Betsy”.

Some of the strongest, smartest women on earth.

I’ve been taught that receiving an education provided opportunities and options. We were reminded to make choices with our work and play that were purposeful. As a teen I would be running out the door with friends, my sweet, gentle dad would ask “what will you be doing?” We replied “just hanging out with friends, I guess.” That was not enough. Hanging out leads to trouble, we needed a focus, even if it was listen to music and talking, we needed a plan. I didn’t admit it as a teen, but I absolutely loved that rule, it reminded me to be purposeful and it was yet another reminder that my dad loved me. I’m so grateful.

When discussing my future career plans my parents reminded me to choose something that helps other people. That was the most important work. Don’t be distracted by false success. My mother lost her sister Ann to cancer when I was very young. I have a few solid, sweet memories of my aunt, whom i’m named after. I have a beautiful picture of Ann and on the back I have a quote by Ralph Waldo Emerson that I like to live by.

“To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty, to find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch, or a redeemed social condition; To know even one life has breathed easier because you have lived. This is to have succeeded.”

Mike, Betsy and Andy. Family and friends.

I realize that I’m gushing about my family. I can’t help myself, they are pretty wonderful.

It’s also important that I talk about the dark times. As a junior in high school I battled with seasonal depression. In the darkest months of the year (December through early March) I would shut down. My grades plummeted, by friendships struggled, and I cried. I cried a lot. My patient and understanding mother sat with me. She tried to understand what was happening. She then gave me a gift that I have carried through the years to follow. She guided me to ask for help, identify the problem and deal with it. We didn’t sugar coat what was happening, I was depressed and I needed help. She was the first to notice when I was having a hard time from then on out. The day of Liam’s diagnosis she knew I would need help and she helped me know that it’s OK to ask for help. I guess even when your baby is 32 your job is never done. I’ve lived a better spectacular life because of her. I’m so grateful.

The worlds best (grand)parents!

I give you this blog entry to show my gratitude to those in my life who have set me up for success. My loving parents, my big brothers who both have hearts of gold, my hilarious and giving extended family, the most amazing friends and a beautiful community to live in. I’m so grateful.

Liam has also been set up for success. He has many gifts and talents that will make him a powerful, contributing member of society. He will have options despite his physical limitations. I’m so grateful.