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.

My saving grace, my darling Lydia.

Lydia is my spunky little mini me. She is my hilarious, vivacious and adorable little shadow. Her beautiful curly hair, chubby baby cheeks and big brown eyes make my heart over flow with love.

Lydia was eight weeks old when Liam was first diagnosed. At just eight weeks she provided me with the support that I needed to stay alive. The responsibility of caring for a very young baby is overwhelming on its own, but she gave me the focus I needed to live through the most horrible weeks and months of my life.

I recall looking down at her sweet fresh face those first dark nights and wondering “will this kill her too?” I was so scared that MD would break down my Liam, claim my Lydia and destroy my marriage.

As the months crawled on I found myself watching every move that she would make. Watching and waiting for her to struggle to rise from the floor, or stumble and fall. Every time she was out of breath from running hard I would wonder, does she have it too? Will she live with the same hardships that Liam’s body has given him? Please, please no.

Lydia is now three and a half, and I’m so proud of her. She is hitting all the milestones that I hoped for her, but I’m proud because I see great things for her. I see her having an empathetic heart, and the confidence to stand strong for those who need a helpful hand. She shows such grace with her sometimes frustrated big brother. Her sweet pat on the shoulder does not go unnoticed when her big brother struggles to keep up with their wrestling match. She, at the tender age of three, plays on Liam’s wheelchair because it is cool. Not scary.

She has challenges ahead of her too. I am very purposeful in my efforts to remain fair. Nothing will be equal, because Liam will need more help, but I will do my best to recognize that and do the best I can. We’ve been warned that she may experience guilt. I understand that.

I know that she will be a great advocate for Liam. There will be rocky years where she may be mortified by her family. Let’s be honest, disability or not, we aren’t getting around that!

Liam has been given every gift possible, except for his health. Lydia, as his baby sister, is one of those gifts. I’m so thankful for my sweet little shadow, and Liam’s biggest fan, our Itty Bitty Liddy.

New glasses!

So many of my blog posts are about the hard times. Yes, things are hard, but they are also immensely happy too.

Liam wears glasses now and every time that I look at him I think, “who is this big kid, this fresh faced thinker, this dude?” He’s stunning, and spectacular and he is a riot. This boy has one hell of a sense of humor. My dad has a new series of really lame jokes that he has been introducing to Liam. My dad laughs, Liam laughs, we ALL LAUGH. Really, what more do we need?

Lunch at the Children’s Museum of Indianapolis.

Frequently I get this pain in my chest, one of over powering love. I love this child and his sister so much that it actually hurts.
Laughter, chest pains, I’ll take it ALL.

I’m certain about a few things. Fart jokes are almost always funny, there is always room for more laughter and being a mother is the greatest gift in life.

Childrens Museum of Indianapolis trip during spring break.

This past weekend Mark and I attended a conference in Columbus, Ohio on Muscular Dystrophy. We heard about it through our local chapter of MDA and thought, why not?

Waiting for the bus in the rain is way more fun when you have all the right accessories.

Typically my mom attends all of Liam’s doctors appointments with me so Mark doesn’t have to take off work, and because my mom asks some pretty amazing questions of our doctors. This conference was a great opportunity for Mark to learn a little more about the disease. I was thrilled to have a day away from my typical mommy duties, and we took this as an opportunity for a weekend getaway. I guess this counts!

We sat for hours in a chilly hospital conference hall listening to speaker after speaker talk about dystrophin, fibrosis, pulmonary function, possible heart failure, TiLite wheelchair, drug trial after drug trial, the years and years it takes a drug to get to market and technical terms that I can’t even recall. I’m used to this now. It’s part of our new normal.

What became pretty obvious around lunch time was something I didn’t expect.

The description of the event was for Muscular Dystrophy. It may seem pretty specific, being that it is a rare disease. Yet, as the day rolled on Mark noted “they keep saying our boys, our boys.” They are saying this because even though women and girls can have MD, the most common form of MD is Duchenne which primarily affects boys (note, I don’t say men, because the life expectancy is 25 years).

It is incredibly painful to know that your child’s disease is too rare to be discussed at a Rare Disease conference.

Liam is 1 of 18 people in the world who have the same subtype of LGMD. Including only 2 other children that live in the United States.

We all want our children to be exceptional. Just not in this way.