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.

Dear Secret Donor,

I know who you are.

I may not know your identity but I know who you are.

You are kind. You are giving. You are generous. You are selfless.

To give a little back story, I experienced something truly remarkable a couple weeks ago. I sat on the story and thought about how I should handle showing my thanks. Since this person has chosen to be anonymous this blog is my best bet at expressing my gratitude.

I received a message from my friend Ashley, who manages Bluetique. She said that someone had left a gift for me at the store and that I should come up and pick it up. What fun! A surprise! During some free time that afternoon I ran uptown to retrieve what I thought to be a small trinket, maybe a necklace or a yummy Starbucks treat. Upon arrival I immediately asked Ashley if she was going to tell me who this was from. Nope. This secret is safe with her!

Ashley handed me a little white box with a gold polka dot ribbon wrapped with care. The store was empty at the time, so Ashley and I stood together to open the box. I opened the little box to find $5,000 in cash.

I couldn’t stop myself, I just started crying. It’s quite a shock to see that much cash in your hands!

What do I do now? I felt like young Charlie Bucket holding the Golden Ticket, “run straight home, don’t stop for anyone! Just go home (or to the bank!)

I cried/laughed numerous times that day. I reread the beautiful card attached trying to think of who could have been so overwhelmingly generous. I was in shock.

Mark and I immediately said, as we have multiple times in the past few months. We WILL  pay it forward. Not tomorrow, but someday. Sometime we will be in the position to give, just like our Secret Donor. We promise.

So, to my Secret Donor. I know who you are. You are the person who put us in the position to buy our van. You gave me the opportunity to look at every person with love and thanks. Every single donation matters, when I donate to others it is usually $5 to $15 because every dollar matters. I need you to know that I’m grateful for all of it.

You gave me an experience that I will never forget. Thank you Secret Donor for everything.

Betsy

Today was a big day for our family. We purchased our wheelchair accessible Toyota Sienna! We were given an amazing deal by a very generous woman in our community. She knows of the struggles that come along with care giving someone with medical needs and limited mobility. We are so grateful for her generosity (and great humor!)

There are few words to describe the relief that comes with this purchase. We now know that Liam will have a vehicle to transport his power wheelchair (that we hope will be available this summer), and he now can walk/ride into the van rather than crawl into our SUV or be lifted in. Liam has been bouncing around all day with excitement about his new van. It’s so comforting to see him smoothly move in and out without challenge!

There will be many things in his lifetime that will present challenges, but with the proper tools, thoughtful planning, and support from the world around him, he will do so much good.

We remind our children daily of the gift we have been given. Loved ones, strangers and concerned community members have gone above and beyond to help lighten the load for our family. Knowing that this van is ours gives us the courage to attack the next challenge head on.

Liam’s disease will demand a lifetime of continued needs, and its very scary. We are so thankful for all the support we have received from all our donors, event volunteers and all those who hold us close to their hearts. Thank you, thank you, thank you.

We are the luckiest.

I know I’m doing the wrong thing right now, but i’m writing while upset.

I’m not sure how to respond to some pretty frequent questions.

“How is Liam doing?” I’m asked this multiple times a day.

The light hearted Betsy will reply “Great! He just joined the 600 Book club in the read at home program at school, he loves his new kite, and he wrote the most adorable little note to his friend”. 

The heavy hearted Betsy is thinking “today was just a little bit worse than the day before, and the day before that, and the day before that”.

“Any recent news on his condition?” People ask with caring hearts, and loving voices.

“Nope. No news. Just keeping all our ducks in a row, trying to keep him walking for as long as possible so that if a drug does come along, it can do some good.” I think all this as I smile and change the subject quickly as to keep from crying.

“Liam looks like he’s doing really well, does he really need the wheelchair?” (Yes, I’ve been asked this multiple times).

{Deep breath in, smile, deep breath out}  “I’m glad to hear he was having a good day when you saw him. We hope for the good days, and plan for the bad days. We also have to be really careful that we don’t over work his muscles, even when he thinks he can do something, as it speeds up the degeneration of those precious muscles.

I’m really not sure how to respond to these questions, so if I look like a deer in head lights it is because I’m thinking of what I want to put out into the world, the sadness or hope?

Please keep asking questions, keep checking in. We all say things that may not come out right, but please keep talking. I would rather have someone say something “wrong” than if they were to stop talking about Liam, about MD, and about our new normal.

There is a common phrase going around, “for every great kid there is a mom who is pretty sure she’s screwing it up”.
Well folks, I’m positive I’m screwing it all up.

I am exhausted. I yell. I have no patience. I nag. I yell more. I use a nasty tone. I sound rude. I sit and watch instead of joining in the game. I don’t laugh nearly enough as I should. I am definitely screwing it up.

I say this to admit to it. I need to do better. Liam and Lydia are some pretty awesome kids. They are fun, and silly, and smart, and kind. I admit to my faults because it’s true, and I NEED my children to know that our flaws are what make us human.

I’m screwing things up because we are not perfect. NO ONE IS.

When faced with a new skill plenty of children get frustrated that it takes time to master that skill. Say hitting a ball with a bat. I get frustrated right with him as he swings a few times, finally connects but moves like he’s carrying the weight of the world in his legs. It makes me think of a line in the chick flick Steal Magnolia’s. A grieving mother, Sally Fields’ character M’Lynn, stands with dear friends at the cemetery after burying her adult child. She cries and screams, “I’m fine, I’m fine, I’m fine.  I’m fine! I can jog all the way to Texas and back, but my daughter can’t! She never could! Oh God! I’m so mad I don’t know what to do! I wanna know why!”

Liam boxing during Physical Therapy.

As the weather has turned warmer, and after school playtime has switched from cuddling with books to riding our bikes with neighborhood friends, Liam’s disease shows. He is tired. He gets angry because he is tired, and I don’t blame him. My heart sinks when people comment on how much energy their children have, and how hard that can be to keep up with them. I respect that hardship, but I would give anything for my child to have extra energy to burn.

I need my children to know that despite our flaws, we are doing the best we can. Liam may never be able to run to Texas, but he’s got big things up his sleeve. I just hope I don’t screw this up!

For most, the word ‘progress’ means moving forward, making improvement, getting better.

For those living with Muscular Dystrophy, the word ‘progress’ is a four letter word. It means the disease is showing it’s self. It is something that sneaks up on you and you may not notice the progression until a skill is taken away.

Liam on his way to school on his very first day of Kindergarten. He was so excited!

I had mentioned to Liam’s warm and caring bus driver, Mr. Rick, that I thought Liam was having a hard time stepping up into the bus without my boost. It was something that even a week before was not as noticeable, but that day, progress showed.

With a little bit of tape, we are on our way!

Liam primarily uses his wheelchair at school, but occasionally he has the chance to accompany me to the grocery store. Liam can walk with me (or in the opposite direction, only looking at the seasonal candy, grrrr) for the first half of the store. This day in particular Liam couldn’t finish the store even in his manual wheelchair. I know I look insane when I push Lydia’s tiny cart, because that is exactly what happens by the end of the trip, and my arms stretching wide to also push Liam in his chair. I’m tired by the end of shopping, but I recover. I’m so thankful to be able to recover.

Liam, age 5, during one of his many cardiology appointments.

We visit Cincinnati Children’s every 6 months to meet with Liam’s team of doctors. The first few visits my heart would ache for the days approaching these visits, knowing that the doctors would be giving us news, hopefully no news (YEY!) or bad news. Recent visits have been far more comfortable to approach, as we are the ones that are telling the doctors about the disease. They know so much, and so very little about MD. As frustrating as it is to be a family going through the course of this disease, I only imagine what Liam’s doctors go through. They meet wonderful families, give them crushing news, and they know that there is no fix, no cure for the disease. To watch that happen must be heart breaking.

Liam, age 9 months, taking a bath in the sink.

We have been warned that ‘progress’, that horrible word, comes in spurts and then levels off for those with MD. In our new normal, progress is holding tight to the skills he currently has. Holding on to the possibility that his tired days are few and far between. Holding tight to the idea that maybe he can run just a little bit farther to chase after his buddy. Most of all, I’m holding tight to this amazing little boy who calls me ‘mama’.

I have been primarily writing of what this disease has done to my life. This is partially because I truly only know my perspective, but also because I’m nervous to share Liam’s words. He is his own person and I don’t want to over expose his personal experiences. This need to protect his privacy must be balanced with the desire to educate people about what Muscular Dystrophy really means. We still have plenty of people who believe Liam has MS. I understand their confusion, and I feel it is my responsibility to fill people in on the truth.

Liam knows he has Muscular Dystrophy, as challenging as it is to articulate, and he tells people about it. Liam has a dear friend, Henry, who our family cherishes. Henry is a spunky classmate who jumps to Liam’s side if someone asks why Liam uses a wheelchair. “It’s because his legs get tired!!” Liam is lucky to have such fun friends, and they are lucky to have Liam.

In his own way, Liam has expressed feeling alone in his disease. He told me he wished he had a twin brother named “Liam” pronounced Lie- um. That Lie-um would have MD just like him and sleep on the top bunk.

Lydia, 3 years of spunk and typical muscles, is able to push Liam over. Liam has screamed out “it’s not supposed to be this way! I’m older!” My response to his tears and exhaustion? “There is not ‘supposed to’. You are strong in certain ways, and Lydia in others”. These conversations are happening more and more. We are determined to be honest about his disease.

We have not told Liam what the doctors have told us about the typical course of the disease. We are going to deal with these issues as they arise because like everyone, no one knows what the future holds. I refuse to scare him, hold him back, or let him give up because of what “might happen”. I am honest as honesty and openness becomes helpful.

I really like the saying “We do hard things”. This is hard, but we will choose joy.