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.

Surprisingly–or perhaps, if you know me, not-so-surprising–this is my first post to this site. I’ve come to think of it as Betsy’s blog, for no reason other than she’s the principle author of each post. Also a first: Last week, for the first time since we first visited Cincinnati Children’s 5 years ago to discuss his new diagnosis of Limb-Girdle Muscular Dystrophy with Dr. Collins, I took Liam to his semi-annual clinical checkup. Twice a year, he makes the 40 mile trek to visit with his “team” of doctors and specialists, in order to see how the disease is progressing, checking the results of a battery of tests against the previous ones. Usually, Betsy is the one to take him (except for the one time, when his checkup was scheduled for the same day as her jaw surgery, and his two grandmas stepped in). It’s a full day of pokes and prods and questions, and it definitely takes an emotional toll on Betsy, not to mention Liam (though I secretly thinks he puts up with it all for the no-questions-asked pudding he gets in the hospital cafeteria at lunch). Because of the strain it puts on Betsy, after the last checkup in September, I promised to take off work and be Liam’s companion for his March 2017 checkup. Warning: This is a bit long. Sorry. (Not sorry.)

Departure

It truly is a full day affair. The first stop on the itinerary was scheduled for 9:00 AM, which meant we had to get up at 7:00 AM to get ready. Not so tough for me, but Liam is used to waking up a full hour later than that, so even his bedtime routine the night before had to be altered. One of the many side effects of MD is trouble sleeping, and Liam is no exception, so getting him to sleep early is always fraught with peril. Thankfully, his neurologist recommended using Melatonin as a sleep aid, and it seems to do the trick with Liam. We both woke up, ate our breakfast, got ready, and were out the door by 7:45 AM, to give us plenty of time to navigate Cincinnati’s morning snarl of traffic and arrive at Children’s on time. We made it there just before 8:00 AM (though they did tell us to be there 15 minutes early…) and used Children’s very convenient valet parking to whisk our van away. It’s been a few years since I’d been back to the main CC building, and it has changed a lot. There were areas that I hadn’t seen before, and ongoing construction gave the place a sort of face-lift. Thankfully, CC has always been easy to get around in, with highly visible and clear signage on every available surface. We made our way to the 4th floor to check in.

Check-In

We let them know we had arrived, and then waited for a short time in the waiting room. Like every public area in our society, there was big and bright television on the wall, so Liam was occupied while I filled out the “paperwork” on the tablet they gave me. I’d imagine a place like CC still has a lot of dead tree paperwork to deal with, but using the tablet for the several-dozen questionnaire is a great advancement (at least for someone my generation and younger, who are comfortable with electronic devices). The questions pertained to Liam individually, and our family as a whole, often only focused on the last 30 days. They asked about things like eating habits, sleep habits, mental health, sicknesses and injuries, etc. I’m sure it’s all fed into a data mining database somewhere deep in the bowels of the place (or directly to the NSA, whichever is easier). After just a few minutes, they called us to head to the first stop of the day.

Echocardiogram/EKG

After a brief stop to get his height and weight (26 kg; I don’t remember the height), we wheeled on down to a small exam room with a bed, chairs, some hospital equipment, and–of course–a television. Here he would have his heart monitored using an echocardiogram and an EKG. I always thought they were the same thing, but alas, WebMD to the rescue: “An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart. These echoes are turned into moving pictures of your heart that can be seen on a video screen.” Meanwhile, “An electrocardiogram (EKG or ECG) is a test that checks for problems with the electrical activity of your heart. An EKG shows the heart’s electrical activity as line tracings on paper. The spikes and dips in the tracings are called waves.” Both tests involved having several pads stuck to your bare skin, and Liam was especially ticklish that morning. He insisted that he be the one to take them off, and the EKG alone had about 16 pads to remove. The tech told us Cardiology would follow up later in the day to discuss the two tests, and a short wait later, we were led to the next exam room.

Genetic Counselor

Clinic days are considered “Yes” days. This means that Liam can ask us for just about anything, and the answer (with a few exceptions) will be affirmative. He has a love of books, so we brought a few with us, but he mainly wanted to play on his tablet. He has a Nabi that his Baba gave as a Christmas present a few years ago, and right now the favorite is a game called Fieldrunners. It’s a simple tower defense game that keeps his attention for hours. The only rule, whether it be books or tablet or whatever, is that when doctors come in, the distraction goes away. He’s very good about this. While he played, the Genetic Counselor at the clinic stopped in for a chat. She mentioned she had spoken to Betsy via email a few times, but never was able to meet with us during Liam’s clinic days. She wasn’t on our itinerary, so I was very caught off guard, but she did have some good information to impart. Since we had both tested negative as carriers for Liam’s random LMNA gene mutation, it meant that he had one bad version of the gene, and one good one. It also meant that, should he choose to, Liam’s kids would have a 50% chance of having the gene mutation as well. Something Betsy brought up later, however, is that genetic scientists can actually remove that bad gene during family planning. The counselor also mentioned that Lydia has a 1% chance of carrying and passing on the bad gene, so that’s also something to keep in mind.

Cardiology

Two doctors from Cardiology came in to discuss the results of the echo and EKG. Both show his heart is still very strong, which is encouraging. One thing they want to do relatively soon is start including a Cardiac MRI in his clinic visits, but not yet. They mentioned they like to do these starting around 10 years of age, simply because it’s easier to tell a ten-year-old to stay still long enough to do the test, and they’ll obey and actually stay still. The purpose of the MRI is to look for scar tissue around the heart. One of the major problems with Muscular Dystrophy is the inability for muscle tissue to repair itself, and with the heart being a very important muscle, it’s better to stay ahead of any complications like that. Another piece of good news was the decision that Liam wouldn’t have to wear a holter monitor this time. A holter monitor is a device about the size of a paperback book that gets strapped to Liam, along with sensors, to get 24 hours worth of heart data. Liam thinks it makes him a cyborg. Even so, this is not something that he cares much for. He says it’s “itchy”, and the 24 hours means he has to wear it to school, and try to sleep with it attached. Because of the stable readings from the echo and EKG, they decided we could defer the holter monitor to the next visit. Liam was elated. He was also cracking up the doctors. They asked about his activity levels, and he went in a long story about recess at school, and the intense tickle sessions and the “Big Swing” something-or-other he and his friends do.

Physical Therapy/Rehabilitation

Next up was PT, and the Rehab doc came in as well. Liam had mentioned that his feet hurt a lot lately, so they wanted to make sure his shoe-insert braces fit properly. After close examination, they thought the braces were still working properly (not too small, nothing rubbing awkwardly), so they thought his ankle muscles might just be getting tired quickly. Either that, or it might be run-of-the-mill plantar fasciitis. He has that on both sides of the family, so it wouldn’t be a surprise. In case it was the ankles, they gave us some new nightly stretches to perform, to hopefully loosen up his limbs and joints. Every night, we do a sequence of stretches on Liam’s legs, arms, and neck, in order to keep muscle contractures at bay. These are a big problem with people with MD, thus to keep his mobility and freedom of movement as long as possible, we do them diligently. Along with new stretches for us to perform on him, they gave Liam some new stretches that he can do on his own, including some he does with his shoe braces on. The idea of leaving the braces on helps to keep the foot in the proper position while the muscle is stretched. They also had him do various timed tests, including getting up off the floor, running down the hall, and stepping up and down from a platform. All times were similar to the last ones, which is good. Finally, the PT measured the angles of his extended limbs, to see if the contractures are getting worse. All measurements were similar to last time, but they stressed the new stretches would greatly benefit is day-to-day comfort.

Neurology

The last visit of the day was from Liam’s new neurologist, Dr. Irina Rybalsky, M.D. When Liam was diagnosed at 3 years of age, we were recommended to Cincinnati Children’s Hospital because one of the leading researchers of Congenital Muscular Dystrophy was there, Dr. Jim Collins. A few years in, he moved his practice to St. Louis, but still traveled to Cincinnati a few times a year, and we were fortunate to be able to continue to be his in his care. He’s now moved on from CC, so Liam and I got to meet his new doctor, Dr. Rybalsky, another neuromuscular specialist at CC. Despite our rule about putting down devices when the docs come in, she let Liam continue to play his game while we chatted, and I think that impressed him. She had talked with the PT about his ankles, and wanted to ensure that he started using his nighttime braces again. The purpose of the braces, whether shoe-insert or otherwise, is to keep the foot and ankle properly positioned at all times. You and I have no trouble in doing this, but someone like Liam cannot, and it can lead to trips, falls, and–worst of all–fractures. Thankfully, Liam hasn’t had any broken bones yet, but the tightness of his ankles concerned her, and wearing the nighttime braces again would help with it. His nighttime braces are more like boots (his shoe-insert braces only cover the foot from the ankle down, and  you’d be hard-pressed to notice them if you’re not looking), and if you can imagine wearing thigh-high hard plastic boots to bed, they don’t seem very comfortable. Liam disliked them so much, that a few years ago we asked if he could stop wearing them altogether, and they consented. Now they want him to wear them again, but offered up a novel solution to the discomfort: Wear them on alternate feet each night. We have a prescription for a new set, and I’m eager to see if the single boot solution allows him to sleep comfortably. Dr. Rybalsky wanted to make sure he was getting enough calcium during the day–1,000 mg for his age–to ward off any bone density loss that could lead to breaks. Between the almond milk with his breakfast cereal, the chocolate milk in his lunchbox, and various yogurt and string cheese at snacktime, he easily gets enough. She mentioned one of the best sources of calcium was, believe it or not, sardines. Something else she recommended, to help with the tiredness Liam feels by the end of the day, was the supplement CoQ10. Apparently it helps improve cellular metabolism, which might give him a little more energy throughout the day. We’re eager to try it. Finally, Dr. Rybalsky repeated a few of the same tests as the physical therapist, including the timed running down the hall. She had me stand at the finish line, and told him to run and give me a big hug. The look on his face as he tackled me was priceless. She also did a few tests where she had him hold his arms or legs out and she tried to press them to his body, to test his distal muscle strength. She was impressed at his strength. Lastly, she mentioned if we were interested in joining any trials, to visit clinicaltrials.gov and search for anything related to Liam’s disease. I’m not sure we’re ready for that yet, but it’s something to keep in mind. Finally, around 2:00 PM, we were free to go (and find the cafeteria).

Lunch

As mentioned, Liam is able to get anything he wants on his clinic days, including from the cafeteria a CC. His lunch consisted of a cheeseburger (his favorite food, which we also had for dinner as well, by request), french fries, Nacho Cheese Doritos, Sprite (soda is still on special occasions only), and for dessert, the infamous chocolate pudding. We took our time, with no more itineraries to follow or questions to answer. Finally, when he was full (a rarity; that boy can eat) we cleaned up, retrieved the van from the valet, and headed home.

Home

Around 4:00 PM, no less than 9 hours since we had both woken up that day, we arrived home. I see now what Betsy means about the clinic visits being draining, both physically and emotionally. I am glad that I went, though, to get a better sense of what his “team” of doctors is doing for him. I will make it a point to go with him more often. The only thing left to do for the day was to watch the penultimate Harry Potter movie (we’re reading the books together, almost done), eat our cheeseburgers, and try out his new stretches at bedtime.

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.

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.