It has been some time since I have written in this blog. Liam has grown older and wiser. His sweet baby face is now replaced with a more defined jaw line, mature smile, stellar teen mustache and dashing good looks. Liam has worked hard and jumped through many hoops to earn his drivers license and enjoy the benefit of that freedom of mobility!

Degenerative disease is devastating. When Liam was a preschooler we grieved so many ‘what ifs’ about his life. We didn’t know what we were going to see happen to his body. That not knowing has been so exhausting and heartbreaking. Now we know what Muscular Dystrophy has done.

Liam requires Spinal Fusion surgery in January. We have been told to expect a possible 2-5 day stay in the ICU after his procedure. He will then be out of school and all other activities while at home for 4-6 weeks as he recovers. Liam has already missed many days of school (for 11 doctors appointments) since the school year started, and it has been a challenge to stay on top of his work. He will receive 5 hours a week of instruction from a tutor while at home healing. I will be taking a couple weeks off work to care for him during this recovery. Liam will then require physical therapy to learn how to balance and walk again after he has healed. Liam will have limited range of motion after the surgery, but he chooses to focus on his increase in height (a possible 2-3 inches as a result of the surgery!).

You may know someone who has suffered from scoliosis and required Spinal Fusion. This is not a routine surgery but it’s not uncommon. The terrifying reality is that for someone with Liam’s added medical complexity it is a very dangerous surgery for him, and he will have a long and painful recovery. We feel confident in the hands of his team at Cincinnati Children’s, but we are still very nervous as any good parents would be.

At the same time we are preparing for his recovery we are now at the point where Liam requires a fully accessible bathroom on the main level of our home. Liam has requested a walk in tub in order to take warm soothing baths to ease the pain he feels in his muscles. The tub alone will cost thousands of dollars. We are next in line with our amazing contractor and feel so lucky to have the opportunity to give Liam what he needs to remain as independent as possible while in our home.

Thanks to our supportive friend and Playschool parent, we now have a Meal Train established to help us along and focus on Liam’s needs. If you find yourself in a position to help we would be ever so grateful.

The cloud of unknowns and the pain of anticipation are two things we are familiar with in our lives. The relentless, unfair, and painful reality of Muscular Dystrophy means that this hurdle will not be our last. We are only as strong as the support we receive, so thank you for all your love over the years. It means the world.

Oxford, Ohio has as a long history of being a charming college town. Our unique brick roads, our old buildings home to apartments with lovely woodwork around bay windows, and our inviting uptown park complete with a stage, fountains, a retired cannon and cement animals. Oxford is home to Miami University, and all that has to offer paired with the benefits of small town tight knit relationships and simple ways of living.

A few years ago I made a social media post about my disappointment in how inaccessible some businesses in Oxford are to those with mobility issues, particularly wheelchair users.

In the time since I made that post, those businesses have not changed at all, but our family has changed a lot. We are more confident in our role as advocates for our child and in his ability to live a fulfilled life. I no longer allow inaccessible spaces to ruin my day, but I do know that I can’t let it slide when simple failures can be addressed by business owners and policy makers.

I spent a muggy Sunday morning walking around uptown Oxford and taking notes on how each business falls short, and what they could do to become more accessible to wheelchair users.

According to the National Institute of Health (NIH) their are 2.7 Million Americans who use wheelchairs. This number is expected to rise exponentially as our population of Baby Boomers age along with increasing longevity.

I could spend hours telling you all the economic reasons that businesses should make themselves accessible to wheelchair users but when it comes down to it, it’s just common sense. When you make your business available to more people, you get more business.

My observations of each business where focused on the front entry, not the interior of the business. This is the one time you should judge a book by its cover. If you can’t get through the front door, nothing else really matters. I looked for steps, threshold heights, door width, signage for options for wheelchair users (such as a rear entry or access to an elevator), and a power door button.

Of the eighty-one businesses that I saw there are only two locations that a power wheelchair user could enter completely independently. Let that sink in, only two. Bank of America at 32 East High Street and The Elms Hotel at 75 S Main street.

Bank of America has a small incline into it’s entry, a very small threshold, enough width for easy passing of a wheelchair and amazingly enough a working automatic door with button low enough for use! This is great and a model of how easy it can be to make it happen. More exciting still, this is an old building, further proof that it can be done!

The next group of businesses have a flat entry with no or very low door threshold but are less accessible due to no automatic entry button. When the door has to be opened by someone else it takes away a level of independence, especially when the door is very heavy. Oxford has many businesses that fit this level of accessibility.

A few businesses in town have thresholds that are a bit too large and too hard for a wheelchair to navigate. The difference of a few inches could make a space completely inaccessible. You’re Fired, Faded Traditions, Wild Berry and Smoke Time could do better by creating a small ramp.

The next group are the businesses that have problem solved their location by adding either a rear entry or an elevator in a different location. I appreciate the effort made to find a way to make a place accessible but I also remind people that rear entries make wheelchair users feel like second class citizens and add extra work and navigating in order to get inside. Imagine it’s cold outside but you have to go around the building to get to an elevator, only to find it requires a pass code, and then to find the elevator is broken. Steinkellar, Oxford Community Arts Center, Mac and Joe’s and Left Field Tavern fit this level of accessibility. The importance of signs to alert users of another available entry is just as important as having the entry.

The final list are the businesses that are completely inaccessible to someone who uses a wheelchair or who can’t navigate steps. They completely lose business because of a simple set of stairs. They absolutely must do better. Oxford Chamber of Commerce, Uptown Tattoo, Tobacco and Vape,Top Deck, Vertigo, The Den, Oxford Flower and Gifts, Salon Signature, CJ’s, Subway, Oxford Originals, Bar 1868, Chuan/Panda Garden, Rittgers Attorney and Vape 27.

I am beyond grateful for the Americans with Disability Act and what is has meant for people with disabilities. We need to be better as a culture at finding ways of meeting the needs of everyone. My goal with this blog post is the focus on the good, and I hope that we can improve the areas in which we are failing. It starts local and Oxford can do better. I challenge you, when you go to your favorite restaurant or shop, please look around and if you see a barrier please call it out to the business. When we know better, we do better.

It has been a long time since we have shared news on this page. Liam keeps growing taller, sweeter, smarter and even more clever by the day. The nature of muscular dystrophy means things are constantly changing in Liam’s body too.

One thing holds true. The thoughtful nature of the people around us. In this post, our neighbor shines. Anyone who drives down our street will notice a house with plenty of trucks in different stages of repair and a work truck with the name MH Equipment. Our neighbors Joe and his wife Mandi love all things with wheels and it shows in their generosity to our son.

Over the past year he has seen Liam ride his bike around the neighborhood. Unfortunately it has been less and less frequent over the past few months as Liam has expressed it is becoming more difficult to have the stamina to ride. Joe saw that when we had our grand adventure our west last summer we rented ebikes. Liam thrived on this bike and it was magic for our family. Joe approached us with an idea.

MH Equipment encourages their employees, like their forklift mechanic Joe, to look for ways to help others. They generously paid for half of the cost of a new ebike from Vilppu’s Bike Repairs for our Liam. Joe, didn’t stop there. He also donated his own money to help cover the cost. Mark and I had a small part to play in this purchase, and we are so grateful for the help.

The overwhelming complexity of Liam’s needs can be all consuming. Having our neighbors and friends come to us with an idea, and then doing the leg work to make it happen means so much. Thank you!

If you see Liam around town give him a wave but don’t slow down, he’ll blast past you!

Almost seven months ago we placed an order for a new wheelchair accessible van for Liam. We are pleased to say that after many delays we are now the proud owners of a brand new Honda Odyssey, complete with an in-floor ramp for Liam’s wheelchair and all the bells and whistles of a space ship!

We have each of you to thank for making the cost of this vehicle more manageable! The cost of the conversion was covered by generous donations from friends, family and strangers. Butler County also helped to get us to the finish line to cover the conversion costs.

We want to give a special thank you to our families. They directed the loved ones of my Uncle Doug Bomholt and my Uncle Doug Hennessey to donate to Liam, instead of donating flowers, after their deaths. This love and support has meant so much to us as we saved and looked toward the future for our sweet Liam.

This vehicle will give Liam mobility and freedom for years to come. In three short years Liam will be learning to drive and we are so excited that he has a van built for his needs. The hope for this van is that it will take Liam through high school, college and young adulthood. We feel such optimism for the future knowing that this tool is here for him!

We need your help.

Our family has been without a wheelchair accessible vehicle for nine months. It is now time that we purchase a new vehicle and we need your help with the staggering cost of converting a van to be wheelchair accessible.

We are not asking for assistance with the cost of the van, we simply ask for support in covering the cost of the conversion. The conversion cost of a new van for Liam will cost $33,000. Again, this is just for the conversion. Due to the pandemic we have had trouble locating and receiving grant funding as most resources are now focused on other issues. Our need still remains and the nature of chronic illness is that our issues will never going away.

We have saved $19,000 toward the cost of the conversion. We have also requested funding from the county but we are not guaranteed financial assistance. Please consider donating.

It takes a huge emotional toll to keep asking for help, but we know we are not alone in our struggles. We are so grateful for all the help we have been given over the years and we are always looking for our own ways of paying it forward.

With love,

Betsy, Mark, Liam, Lydia and Gordie Walker

Originally published as ‘Fortunate’ in 1964 my favorite children’s book was renamed ‘What good luck! What bad luck!’ in 1969. I am the proud owner of a tattered and torn copy of this cherished story. Young Ned experiences all the ups and downs that life has to offer.

What good luck!
Ned got a letter that said,
“Please come to a surprise party.”
What bad luck!
The party was in Florida and he was in New York.
What good luck!
A friend lent him an airplane.
What bad luck!
The motor exploded.

Ned stumbles through his day, full of fear and hope, excitement and let down.

The current world is full of fear and hope, and we are doing our best to keep our feet under us. Living during a pandemic is terrifying for anyone, even more so for those living with chronic disease. Our family is frightened, hopeful, anxious but with a renewed sense of calm and focus on our priorities.

Our school system has decided to start the year online and we’re so grateful. Liam and Lydia will be staying home all year due to Liam’s extra vulnerability and we are comfortable with this decision. Are you ready for the zinger?

What good luck! We have a safe, warm home.
What bad luck! We can’t have loved ones come to our home.
What good luck! Mom and Dad both work from home.
What bad luck! We can’t play with friends or go to the pool and playground.
What good luck! Liam has a power wheelchair that can take him on close adventures.
What bad luck! Our wheelchair accessible van is no longer safe to drive and is now gone.
What good luck! We have time to save and plan for a new vehicle since we aren’t driving many places.
What bad luck! A new van will cost over $70,000.
What good luck! We are not alone and have supportive friends and family.

If you find yourself in a position to help us reach our goal we would be ever so grateful. We are prepared to pay for the cost of a new minivan but would appreciate help covering the cost of the $32,000 conversion to make the van accessible to a wheelchair.

We understand that right now is a terrible time to ask for donations. Even through a pandemic, muscular dystrophy doesn’t go away and Liam’s needs are as complex as ever.

Home.

Living with a disability comes with many challenges. One of the most common challenges is mobility. WIth the generosity of our amazing friends and family we were able to fully fund a van that would accommodate Liam’s powerchair and help us to keep him on the move and active in the world.

We are about to tackle the next big barrier that people with disabilities face, finding appropriate housing.

Our current home has been a perfect ‘starter home’ for our family. We moved in when Liam was still growing in my body. We had all the dreams that a budding family of three could imagine. Paint a nursery, enjoy playing in our fenced in backyard and then sit around the fireplace during our cold Ohio winters. It has truly been a home to love.

Pinewood Derby 2018

We are now facing the reality that this house will not work for our family. Not only are our children growing older, they are growing larger. They need space that we just don’t have. Liam currently can’t use his wheelchair in our house, luckily, he doesn’t have to, yet.

Our door ways are too tight and the bathrooms are comically small. It just won’t work.

We could invest a large amount of money in rehauling the entire house to make it work, or we could move. We always knew that this home wouldn’t be our ‘forever home’ so now it is time to make the next step.

We have given our amazing friend and realtor the challenging task of finding a home that meets our large list of needs. Due to our desire to stay in Oxford and the Talawanda school district we have limited options. Sure, we could build, but to be honest, that sounds terrible to me.

Liam needs a home with a main floor master that we can make all his. Mark needs a home office that isn’t stuffed with all of my teacher supplies. He shouldn’t have to explain to co-workers in Dubui or London why there are stickers and paints all around him. I also have my own dreams of creating a preschool in our home so a full basement would be amazing.

Miami Hockey

When we started on this journey, I was completely willing to set aside my own goals and dreams to make sure that Liam had everything. I’m realizing now that I too need to have a home and a career that makes me feel satisfied.

Our home also needs to be a place that Liam and Lydia can feel like they can have their friends over to play. I grew up in a home that all my friends knew that they could just walk right on in without knocking. I want that for my children. I need that for Liam. He may not have the option to easily go to a friends house. They may have too many stairs, or a small bathroom that he can’t maneuver. We need our home to be the place to hang.

There may come a day very soon that we call on our handy friends and loving neighbors to help us to build a ramp, widen a doorway or open a shower.  I am so thankful that we have the love and support of all of you. We know that we can make this move without fear because we have your help.

“Would you like to go to a Cincinnati Reds game this weekend?” 

“Sure, sounds fun!”

For most families this might be the extent of the conversation that goes into planning a simple outing to a baseball game. For our family, it takes just a bit more.

Step 1: Find seats that are both wheelchair accessible and all four seats are together. Then debate on purchasing the tickets since the cheapest tickets are $35 instead of $15 for the real cheap seats. We pay the extra.

Step 2: Think about how the start time (7:15pm) might affect Liam’s ability to participate. Will he be too tired to enjoy the game? Will his body allow him to to stay for the entire game? Will he be in pain the entire next day because he used too much energy that night before? Don’t forget, I will need to slow him down through out the day of to ensure that he doesn’t use up all his reserves before we even drive to Cincinnati. Will it be too hot? Will he get cold when the sun goes down? Will I notice, since I can properly control my body temperature and don’t automatically remember he gets cold and hot more easily than I do?

Step 3: Remind Liam and Lydia to save their energy all day so that we can have fun tonight. Remind them again. And again.

Step 4: Make sure the powerchair has a full charge.

Step 5: Have a brief battle with Liam over bringing the chair at all. Encourage him to see that there will be a lot of walking just to get into the stadium. Try to give him control of his choices, and allow him to be upset when he just wants to walk but we both know that he would need carried after a few minutes. Remember how out of shape I am and how hard it would be on my own body if he needed carried. Feel guilty.

Step 6: Arrive in Cincinnati and realize that we didn’t plan enough and don’t know where we can park. We have the additional challenge of finding a spot and a half/ accessible spot so Liam can unload safely.

Step 7: Ask for directions/ recommendations from two police officers.

Step 8: See the kindness and compassion in their hearts.

Step 9: Unload and try to move quickly as the game will begin shortly and we don’t want to miss any of the fun!

Step 10: Crowds of people surround Liam in his wheelchair. He feels overwhelmed and uncertain about where to roll. He does his best to be careful of feet and not bumping into unaware peers.

Step 11: The elevator is broken. Really. Where to now?

Step 12: Ask for help again. Kindness shows through from strangers. Smile.

Step 13: Walk to far corner of stadium to the working elevator. Elevator tenants speak with raised voices, and go overboard to show how supportive they are of Liam in his wheelchair (almost ignoring his excited sister by his side).

Step 14: Give us directions to our seats. We unload the elevator and maneuver through anxiety causing crowds to find that we are met with stairs. It might as well be a brick wall to us.

Step 15: Turn around and return to elevator.

Step 16: Get proper directions and then use the ramp. Mom is feeling a bit hot, and emotionally tired. I just want to find our seats. The game has started.

Step 17: We find our seats only to discover that we had purchased the wrong seats and don’t have enough companion seats together. Mark stands for the game, because that is the kind of guy he is.

Step 18: Buy all the treats. Pay all the money. Totally worth it.

Step 19: Watch my children love every minute of the game and then remind myself that it is worth all the fuss.

Step 20: Watch Liam take his shirt on and off as his body, void of fat, goes from sweating to chilled and then back again.

Step 21: Liam is clearly getting tired, we remind his to raise his wheelchair so he can recline and still see the game. It works wonders. Be thankful for the donated money to be able to buy the extra feature on his chair to allow for this moment.

Step 22: Remind our children that they can go anywhere, and do anything, with just a little planning and patience.

Step 23: Work through crowd again with a bit more confidence on how to return to our car.

Step 24: Watch Lydia sleep during the drive home. Watch Liam turn a shade of grey and tell stories the entire hour drive home. Knowing full well that we will not be able to do his nightly stretches tonight. It’s late. Feel guilty.

Step 25: Watch the affects of this late night run its course on the body of my baby. Feel sad. Feel happy for the experience. Plan the next outing. Stay focused on joy.

The Walker family will be traveling to Washington DC and Arlington, Virginia for a week this summer. We will be attending the CMD Scientific and Family Conference. This conference will give Liam and Lydia time to socialize with other children who have Muscular Dystrophy and their siblings. It will also give Mark and I the chance to learn new strategies on how to manage this disease as it progresses.

Liam winning the ticket jackpot!

Liam won 2nd place at the Cub Scouts Pinewood Derby.

This conference is particularly exciting for us because it is focused on Liam’s subtype! We have no idea what his progression will be, but having the opportunity to meet with the few other families in the world who know EXACTLY what we are dealing with would be an absolute gift.

During this trip we plan on spending additional time with family in the area and sight seeing in the capitol. We will be driving because we are not interested in wrestling with airline issue with Liam’s wheelchair and then needing to rent a wheelchair accessible van.

Conference Registration costs: $316

Hotel Costs: $390

Kids Camp (activities for Liam and Lydia that are separate so we can discuss some of the more frightening parts of the disease. : $210

Children’s Museum with Lydia.

As with all other aspects of living with a chronic disease we are doing our best to make this trip fun filled and full of happy memories. Thank you for helping with the financial burden and for giving our family a chance to learn more about LGMD.

Thank you for any help you may be able to give us.