As Tom and I are days away from become a family of three, and thanks to all this bed rest, I have a lot of time to think about the kind of family I hope we have.
I think about eating dinner together and talking about our days.
I think about family camping trips.
I think about game nights.
I also think about the example that I want to set for my kids and the type of parent I want to be.
Yes there is some anxiety that seeps into my head about what kind of family we’ll have or if I will be a good parent. It probably wouldn’t be normal if a new parent wasn’t afraid of being good at it, right?
But then I look at things that my husband does, and I know that I have the best partner in this journey to make our family matter. There is a calm that washes over me when I see him want to make a difference in this world.
This week in all the hoopla of ALS awareness and the Ice Bucket Challenge, Tom wanted to spotlight another disease that is fairly unknown.
Duchenne Muscular Dystrophy
We have had the great honor to get to know one particular family who deal with DMD every day. I have written about this family before (here and here).
The way that we have seen them support each other and rally around each other is awesome. They make time to be real. They make time to play and laugh. They pick each other up (literally and figuratively) in down times because that is what you do with family.
Tom reached out to them this week to see how much T.J. weighs. He had the brilliant idea of helping “carry the weight” because we know that is a big part of this disease. Duchenne is a disease that breaks down the body and makes that person rely heavily on the help of others as their own physical strength diminishes. Their weight needs to be carried. Think about all the things you do every day like climb stairs and open doors; all of these things are becoming increasingly more difficult for this young boy to do as he ages.
At first I thought Tom was crazy for his idea of carrying T.J’s weight around for 5 days. I thought about all the things we had to do this week, and wondered whether it would be a burden for him physically to shoulder 70 lbs for that amount of time.
He just brushed it off and said people need to know about this. So why not? (Way to knock me down a few on the humbling pegs…)
“Do not neglect the gift that you have.” 1 Timothy 4:14
Tom wanted to make a stand for this family and this movement to end Duchenne. And Tom never does things so so. It is always go big or go home. He wanted to make a statement for a family that has impacted us tremendously and let them know they aren’t alone.
(Excuse me while I wipe away the proud wife tears….)
He chose to carry this weight for 5 days, and wants to challenge others to do it for just one. Duchenne is something that needs awareness and people to support the trials for a cure, but more importantly people to fight for the boys who are being affected.
It has been interesting watching reactions of people during the last 5 days when he explains the backpack full of weights. Him having it at our latest hospital visit was a trip. It sure is making people think.
It’s moments like these I feel so proud to have him as my husband and father to our kids. It’s moments like these that I know he is going to have a blast being a parent. So yea maybe he isn’t the greatest at loading the dishwasher, but he is the greatest at making the big things matter.
(And who am I kidding…I act like the dirty dishes don’t exist most days.)
Tom is always collecting little Army and outdoorsy gadgets so he can show the boys. The excitement I see him have when he talks about giving TJ a small fold-out chair, may seem meaningless to others, but to me it means the world. I know that there is joy every time we visit as the boys ambush Tom with some sort of nerf weapon. Although, I am sure their parents aren’t as thrilled when Tom comes over planning to teach them how to build booby traps. Boys will be boys right?
As I have watched Tom over the time we have known TJ, I have been blown away by the small things. Here are two individuals that were randomly placed in each others lives. They impact each other on so many different levels, which in turn impacts those around them. There was a purpose that we have come to be a part of their lives. I know that Tom is never looking for attention or hero status when he visits with TJ, but with his actions, he is becoming part of something so much bigger than himself.
Tom and TJ bring joy to each other lives. And for some fleeting moments, you are able to forget all the weight of life. The smiles that we all get to enjoy are unexplainable.
And that is a great moment to live for.
TJ and his family give something to us too. We have loved learning from this family about strength, humility, compassion, and love. They have been excellent role models for Tom and I.
Maybe you don’t have a family like this in your life. However, I hope that everyone can find something in this world that matters to them, and they can pass along the good to others. We were all given a reason to be here, no matter how little we may feel some days. Even little gestures can have huge impacts. There are a lot of things weighing us all down at times. We all have our burdens, but yet we all have our gifts to give. Think about the dramatic changes we can make if we make small choices to help others carry their weight for a minute, hours, or even days.
So in these days where our Facebook walls are covered with ice water videos, I urge you to be inspired to join the crowd and to do something. That could be partaking in the challenges for these charities; it could be by donating your time or money. It could be by simply starting a conversation with a random person in the grocery store with a smile.
But I think that the important thing is to DO something. Find your way to use your gifts to reach out to someone. We all have a purpose, and are we willing to answer that call?
Be someone who can inspire good and change for the better.
That is the kind of parent I hope to be. And I feel blessed knowing that IS the kind of parent Tom will be.
I think I will keep him around.
If you want to learn more about Duchenne and how you can help go here and here.
That’s such an incredible thing for him to do. George will be a lucky little boy when he arrives (if he hasn’t already. I don’t know since you haven’t posted anything on Instagram, haha).
Yes he is!
How thoughtful! That’s a really creative way to bring attention! It wasn’t until recently that I learned what the reasoning behind the ice bucket was..
Tom is pretty creative. And it is picking up some steam in his hometown.
What a cool idea! Tom has a good heart.
I know what you mean about being a champion for a lesser known disease. With my brother-in-law’s Cystic Fibrosis, a big part of the issue is just awareness about the disease. Here’s hoping that great strides are made in Duchenne Muscular Dystrophy.
Here is to hoping! Awareness definitely helps get more attention to the medical advancement that is needed to move things towards a cure!
George is such a lucky little one to have a dad, and a mom like you two. I can’t wait to ‘meet’ him soon!!!
Thanks friend! We are pretty lucky too!
I read this the day you posted it. I’ve been waiting for sufficient words to say thank you, but I just can’t seem to come up with anything adequate. I do love to see Tom & TJ interact. I wish you could have seen Tom’s face when TJ asked him last time “So…is that all the cool stuff?” Tom has SPOILED him!!! George is such a lucky little guy to have both of you as his parents. We can’t wait to meet him.
Tom told me about his reaction, and we had a good chuckle about it. They are so fun to watch together!