Dawn's Divas Run for ALS

Today marks 10 years. Ten years since complications from ALS took my joyful, family adoring, grandbaby obsessed, sun loving momma. It is hard to believe 10 years has happened—10 years of memories she hasn’t been here to be a part of. The past 6 years have been my most adventurous and memory making of my life—marriage, amazing travels, two lovable, chubby cheeked girls. Not a day passes that I don’t think of her, particularly in relation to my girls. It is more painful than I thought to think each day that she won’t know them. She won’t know Mabel Dawn and Thea Dawn. Swallowing that each day without tears takes some real emotional work.

Today I will cry a lot. I’ll look through and read old blog posts about our family’s journey with ALS. I’ll fumble through tears as I show Mabel pictures of her grandma Dawn and attempt to explain dying and heaven in 2 year old language. Then, I’ll go with Jon, Mabel and Thea and eat ice cream because we do this every April 2nd.

I will also run today because running reminds me of my mom. Running reminds me what my body can do. Running keeps me connected to the ALS community and the lives affected daily by this disease. Running provides a space for me to be with my mom, talking to her and soaking up the silence of our time together. And….running gives me the courage to invite you to be a part of a big fundraising goal of me and my siblings. We are calling it $10,000 for TEN YEARS. We want to raise $10,000 for Team Drea Foundation by December 31st, 2019. As many of you know Team Drea is our friend Andrea’s foundation and it raises money for ALS research. Andrea is an athlete, a dear friend, a determined racer and a life changer. She is a force within the ALS community and her foundation is making an impact! Help Dawn’s Divas increase that impact.
I know not everyone is in a place to give. That’s ok. If you can’t give, maybe you know someone who can, someone who is impacted by ALS in ways you aren’t. Pass this on. Invite them to be a part of $10,000 for TEN YEARS. For those who can give, every dollar makes a difference. I’ll be training for your money. I ran my first 5K since Thea was born at the beginning of March and have plans for an 8K in June. I hope for a few more races before ending the year with a marathon in Durham (with Jodi I hope). I ran my first marathon to honor 5 years so I think I need to honor 10 years the same way. If you are willing to give, my heart is grateful beyond words. Go on…be brave…make a world without ALS.

To donate to our Team Drea fundraising page, click here

My mom made an appearance in my dream the other night. This may seem like a small thing but in the nine plus years since she passed, she has only been in a handful of my dreams. The interesting thing to me is that in these dreams  I have never seen her face. When I awoke and remembered this last dream I could not for the life of me remember if I saw her face. It really bothered me. This probably seems like a silly thing but when she is in my dreams I awake and feel like I truly have seen her. It’s a weird thing but it means so much to me to at least, for a short time,  ‘feel’ her. It wasn’t odd to me though that this dream came the night before I planned to do one of my two 20 mile training runs as I prepare for the marathon. Although compared to the my first marathon I have not raised nearly as much money or completed all the runs, it never escapes me that this whole marathon running started as and continues to be a way to honor my mom’s memory and raise money to find a cure for ALS. There have been many runs where I find myself talking to her, and the emotion of running for something more than me has gotten me through several excruciating runs.

This past month has been one of really missing my mom. I sent my youngest to her first day of kindergarten, and although she had been counting down the days until she ‘got to go,’ I was dreading this day. There are some amazing aspects about kids growing up but as someone who loves little kids, I am saddened that this phase of having my own kids home with me is over. I longed to call my mom and cry to her. Sometimes I think she had six kids so she could prolong this phase in her life! I never quite understood that grief changes but never goes away. When my mom was sick, I remember someone telling me that her mom had passed away 10 years earlier and not a day has gone by that she doesn’t think about her. I honestly thought she was a little crazy. I knew that losing my mom would be difficult but I never imagined that nine years later I would still have days that I cry because I miss her so much. I didn’t think that I would have such a deep longing to talk to her or hug her.

With all this being said, I am thankful that I have found long distance running and am able to feel connected to my mom because I am running in honor of her. I cannot control when I have a dream about her but I can continue running and raising money to find a cure for ALS. I would love for you to be a part of this too.

Donate Here

-Jodi

Thankful for these three and the opportunity to talk about their Grandma Dawn with them.

My Dear Mabel,

I cannot believe that your 1-year birthday is right around the corner. A year has never flown by so fast. Mommy went on a long run this morning and reflected a whole lot during those 9 miles. I thought about this time last year when we were waiting to meet you, knowing any day could be THE day; about the moments while in labor that I didn’t know if I could do it, and then I did it; about the moment I first held you in absolute delirium and exhaustion. I then thought about all the many moments of sheer amazement we as a family have experienced watching you grow and begin to grasp this world. Oh, what joy.

Interspersed in all these reflections of joy came moments of sadness thinking about a special person: your grandma Dawn, the person after whom you are named. Tears come regularly when I recognize again and again that you won’t know her love here on earth. Her love for the grandbabies was a special love. She lived to love them, spoil them, giggle with them and wrap her arms around their sweet chubby bodies. It was a love that went over the top…and often drove me and your aunties and uncle a little bonkers. If she was still here, I probably wouldn’t appreciate it as I should. But that’s the thing about death, it brings about an appreciation for things that you may not have appreciated before. When you don’t have it, you miss it more than you ever thought you would. She was amazing Mabel Dawn. Her heart was so full of love for her babies (children and grandchildren), it often exploded. As mommy would say, “She experienced some serious love aggression.”

Sometimes I think you just might know her. That may sound weird to people, but oh well. The attention you give to the VanEssen family photo in your room and the mommy/Grandma Dawn photo in the living room makes me think she is close to your heart. That, my dearest Mabel, makes my heart explode.

I promise you two things my Mabel Dawn: First, I will raise you to know your grandma Dawn. Whether it is the cake I will make you next week or the pictures and stories I share, she will be a part of your life and your heart will know her. Second, I will continue to be brave and run to make a world without ALS. I will take you on my runs and instill in you amazement for what our bodies can do.

My run felt easier this morning than previous runs. I think it is because you and Grandma Dawn were in my heart and mind the whole time.

(My Great Grandma, My Mom, Me, Declan)

I found this picture today while going through some things.  This was about 6 months after my mom’s ALS diagnosis.  Nothing brought her more joy than her grandchildren.  She constantly told me that Declan was the cutest baby ever but followed that comment by telling me not to tell anyone she said that (oops!).

As I looked at this picture today, tears streamed down my face.  I would give almost anything to have one more day, one more hour, or even one more minute with her.  There are days when parenting is tough or areas of my life are overwhelming and I long to be able to complain to her or cry with her.  I have amazing siblings who have walked me though many of these times but there are moments when nothing is quite like the love and reassurance of a mom.  Times when I don’t want to be given advice but just want someone to listen and understand me.  My mom did that well.

I have had so many times of longing to see my mom over the past 7 1/2 years but what I have seen more and more especially these past two years is areas of joy in my life that I would not have had if my mom were still here.  These times make those longings more bearable because although I still wish she were here with me, I am able to feel her presence in these times of joy.  I want to share with you just a few of these things (in no particular order).

• Getting back into the ALS community and having the opportunity to meet some of the most incredible people ever who have this disease but are not letting it take over their lives.
• Becoming a part of Team Drea which is a source of encouragement in my training and allowed me to meet an amazing friend Andrea.
• Keeping my mom’s memory alive through my running and raising money for ALS.  My running and meeting others with ALS has brought up many questions from my kids about my mom and ALS.
• Finding a new love for long distance running.  I was always a 3-5 mile runner at the most.  While training for my first marathon, I began enjoying those longer runs.  It is incredible to me how one can push their body to do things they never imagined and how in doing this, one can find healing.
• Sharing my new found love for running with my kids.  My oldest son Declan is training with me to do his first 5K in November.  My daughter Elliott is doing her first 1 mile race in November.  Although my husband doesn’t share this love for running he is training to run the marathon with me.  This may never pass on to Zachariah but 1 out of 3 isn’t bad.
• Meeting an amazing group of runners in my own community who are willing to get up at crazy early hours to run each other and make sure everyone gets their needed miles in.
• Gaining a new understanding of loss and being able to surround others who have experienced loss in one way or another.

As we near the 3 week mark until my marathon, I am again reminded why I have put in the hours of training and hard work and I want to share it with you in the words in the picture below:

I would love for you to join me in my fight: http://web.alsa.org/site/TR/Endurance/Chicago?px=1933118&pg=personal&fr_id=12161

It is that time again….Jodi and I have signed up for races and we want to begin the fundraising! No different than what we’ve done now for the past 2 years: We pick a race (or several) and raise the funds for ALS! Team Drea is still going strong. With more than 100 members, together we’ve raised over $100,000. There are new racers, more energy than ever and a Captain who leads better than any of us could hope for!

November, 2015–City of Oaks

So…what’s the racing look like this season? Jodi is hitting it hard again with her husband, Jeremy and going for the race that inspired us, The Chicago Marathon. I am both excited and jealous she is going on that marathon journey again. I on the other hand, have decided on at least 2 races this year (with hopefully another before September). My first is this Sunday. I am embarking on the triathlon attempt and giving a sprint-tri a try. I have always been intimidated by triathlons as I don’t consider myself a strong biker and I’ve never taken a swimming lesson in my life. However, almost exactly a year ago, I met up with Andrea and folks at the Ramblin’ Rose Raleigh to cheer on Team Drea at a sprint-tri. While watching, I said, “I’ve never done a triathlon.” Without skipping a beat, Andrea, our fearless captain said, “yet.” My eyes widened and I chuckled. “Yet” I thought. This didn’t leave my mind as I watched pictures of Team Drea finishing a variety of triathlons and finally decided that I’d give a sprint-tri a go and see how I like it.  Lo and behold…I decided doing a sprint-tri alone wasn’t quite what I wanted, so I’ll have a little company:

Not the husband (he’ll be cheering on the sidelines), but the little babe! I’ll be pushing through my first tri 5 months pregnant! I’m excited this little one is experiencing the joy, love, excitement, encouragement, determination and awareness that IS TEAM DREA right from the start. My hope is that this little one doesn’t know life without Team Drea. I’ll tell them about our first race together and hopefully be cheering them on someday as they cross the finish line in their first Team Drea race on their own. I told Andrea that we need a Team Drea onesie! Maybe a little #179 on the butt…cause that would be too cute!

So…stay tuned for better and more consistent blogging about the sprint-tri, Running of the Bulls (my 8K race in June that Jon and I are running) and the Chicago Marathon training of Jodi and Jeremy. Oh, I can also give a few updates about the baby too if you want.

Please support us in raising money for ALS research! We are supporting the Blazeman Foundation again this year as they have such great things going, including, the work of Dr. Carol Milligan at Wake Forest. She has been working with a “heat shock protein” (Hsp70) that is showing promise in extending the life of mice with ALS. If all goes well with her testing through the end of 2016, the lab will be in a position to begin working with the FDA on a human trial — VERY EXCITING!!! But if it happens, they will need a significant infusion of cash to take that step. Support ALS research! Donate! $5, $10, $15…it all makes a difference!

I remember the moment so vividly. The ugly words: “Hey Jill, do you have a minute,” “mom’s doctor called,” “2-5 years.” The gut punch. The inability to stand on my own. My friend Dave turning around and running to me. The tears streaming down my face. The ride to my house. Lauren sitting with me, simply being present. The world looking oh so different than it ever had before.

All this from the POWER of three letters: A-L-S.

It is easy to look back at that moment and the months that followed and see the power of ALS as that of a tyrant. It is cruel, unforgiving, harsh and oppressive. It brings tears, loss, anger and, eventually, death. This was the only power of ALS I knew for months and months. But, over time, maybe even the time of several years, my eyes and my heart began to see ALS has other powers too.

ALS has the power of joy and love!

Like the love I have for these peeps:

I love my family more fiercely and deeply than I thought possible before ALS. I love them “to infinity and beyond.” They have my heart.

Or the joy in my life from this guy:

This guy is amazing and I am my most joyful when he is in the room. My joy is more full and abundant because of the deep pain and sadness of ALS I experienced. I would not know this deep joy without simultaneously experiencing the deep loss.

ALS has unexpected powers of friendship.

Like this one:

A friendship that was immediate and life-changing. One that connected me to 50+ people who inspire, challenge, and encourage one another while simultaneously raising awareness and funds for ALS.

It is a friendship that helps me stay connected to people who make evident the beauty, hope, humor, and reality of ALS:

Speed4Sarah

Hope for Steve

Chris Rosati

Andrea Lytle Peet

ALS has the power to make you ACT!

Like run a marathon:

And then sign up to race again…and ask people for more money (you can donate here) because running has changed you and made you believe not only in yourself but in the goodness of friends and strangers. And it makes you grateful for every step you are given because well, some people can’t take those steps anymore.

So…you keep running. You run in the mornings. You run in the afternoons. You run on work days. You rise early and run on the weekends. You run when your husband doesn’t want to get out of bed. You run when you don’t want to get out of bed and your husband does. You run because it reminds you to stay humble, be grateful and love deeply. You run because it reminds you of your mom.

Oh the power of ALS.

And…ALS has funny powers.

Like the funny power of making you join Facebook after 6 years of preaching the woes of Facebook. You witness the connections, the awareness and the education ALS is bringing through Facebook and you finally say, “OK! I’ll join,” and hope it pays off. You hope that the woes of Facebook do not trump your desire and goal to introduce others to not only the cruel powers of ALS but the many other powers of ALS!

Life since that fateful day in February of 2008 is more beautiful. It is more honest, genuine, joyful, and simple. In the words of Stephen Colbert, I have come to “love the thing that I most wish had not happened.”

Today would have been Trickett Wendler’s 42nd birthday.  If you have followed our blog over the past year, you will remember that Trickett was one of the very special people for whom Jillaine and I ran the Chicago Marathon. Trickett was all too familiar with this disease as she was one of the 5% of cases that are genetic and lost her dad to ALS in 1997.  Trickett was such a powerful advocate for ALS.  She did all she could to help raise money and awareness for the horrible disease.  Trickett had 3 extra reasons to fight and those are her 3 young children.  I think that one of the many reasons Trickett had such a special place in my heart was the connection I felt with her as a fellow mom.  Her love for her kids was evident in every bit of her fight.

Trickett and her loves

Tonight, as I laid with my seven year old who was not feeling the best, Trickett again came to my mind.  As a mom, I want to always be able to be there for Declan, Zachariah, and Elliott when they are sick or hurting in any way.  While laying with Declan, I thought about Trickett’s children and the immense hurt that they have felt and continue to feel.  It makes me hurt that Trickett is not able to be there when her kids are hurting.  It makes me angry that there is still not a cure.

I know that one of my mom’s biggest struggles while she was battling ALS was that she was leaving her kids.  It tore her up inside to know that she was not going to be able to be there for us at a time when we needed her most.  I suspect that Trickett and all the other moms who are battling this horrible disease face this struggle.

I have been asked quite often since signing up to race again, why I continue to run.  The truth is that after the marathon, Jillaine and I continued to follow the lives of the people for whom we ran.  Trickett passed away in March, and then on April 2, exactly six years after my mom lost her fight, Jodi Oliver passed away.  Other people continue to lose abilities we take for granted.  Jillaine and I were faced with two options:  we could turn away and pretend that none of this was happening or we could continue on in our fight. It can be emotionally difficult to get involved in the lives of people living with ALS as it is heartbreaking to watch their loses. However, it is also one of the most life giving experiences as these friends have taught us what it means to live fully and bravely. It is a much richer way to live.  Their courage only gives reason to run.

My three little loves

Would you consider joining in our fight by donating to The Blazeman Foundation, an amazing foundation doing amazing things for people living with ALS and raising money and awareness for a cure!  Our fundraising goal for this race is $5000! We would be honored and so very grateful if you could once again support us in our effort to find a cure for ALS. Our Team Blazeman page can be found here: http://www.active.com/donate/teamblazeman/dawnsdivasrun

-Jodi

I thank Jodi again for finding a new running adventure for us that is inspiring, challenging and making a difference! In a strange round about of connections, Jodi has gotten us involved in TEAM DREA. This new challenge has already brought about an immense amount of joy and well, some tears as well. It has proven to be another experience of God’s grace mixed up in the sadness, confusion, anger and challenges the are wrapped up in ALS. One piece of this grace is a new found friendship. I met Andrea and her husband Dave last week Sunday on Mother’s day and we went on a wonderful run/trike together in Falls Church, VA. It was the best Mother’s Day I’ve had since my mom passed away. Then, one week later, we gathered in Raleigh to support fellow Team Drea members at the Ramblin Rose!

Andrea and me cheering on fellow Team Drea member, Julie, at the Ramblin Rose in Raleigh!

In case you didn’t click on the link above, Andrea is the inspiration and motivation behind Team Drea. Diagnosed with ALS at age 33 one year after completing 5 triathlons, Andrea challenged people to challenge themselves by picking a race and using this challenge to raise money for the Blazeman Foundation. So, that is exactly what Jodi and I are doing! We have challenged ourselves to run the Navy Half Marathon in Washington DC on  September 20 and raise money! We would be honored and grateful if you would join us on our journey to find a cure for ALS.

To support us, click here:

http://www.active.com/donate/teamblazeman/dawnsdivasrun

This week has been heavy. I’ve done a lot of reflection. I’ve done a lot of crying. Jodi texted me Thursday morning to tell me that Trickett Wendler had passed away. If you read this blog or regularly checked Jodi’s Facebook page while we were training, I am sure you came across her name and her story. She was a mom, a wife, a friend, a fighter and such a huge advocate for ALS awareness and research. She fought to educate and bring awareness not only to her Facebook readers but also to researchers, government officials, professionals etc. She inspired me daily in our training to push harder and be an advocate. She invited me back into the everyday of ALS through photos, messages and communication with Jodi. She reminded me of the importance of advocacy and fighting for a cure to a disease that affects me daily as I remember my mom and feel her absence. While I never met her, she allowed us to know her through her teaching and advocacy in hopes that we’d be inspired to keep fighting. For her I will do this.

“March 18, at 9:15 Trickett passed at Waukesha Memorial Hospital with Tim beside her. She said last week that she hopes people will keep loving her, but hate ALS. When people asked her what they could do for her, her answer was “keep fighting.” Trickett chose to live out loud…so that we might better understand what ALS looks like, and we each learned what this disease does to the people who love her. We all want to know what we can do. We can take our cues from T. Bravely choose to live out loud. Stay informed and inform others about worthy ALS organizations that spend money finding a cure and changing antiquated or uninformed laws. Count how many steps you take in a day; feel blessed with the opportunity, and imagine the next person in a wheelchair on the same path. Teach children that they have power to change lives. Hug people with your heart.” –Team Trickett Wendler: Fewell to Fight ALS

Jodi and I will keep counting our steps and feeling blessed with the opportunity this year. Our running to raise money for ALS will continue as members of the Team Drea Challenge. More on this to come. More opportunity to fight ALS, bring awareness and raise money! Trickett, thank you for your inspiring voice. I promise to continue to fight for you and for your children so that they never have to experience ALS the way you did. Goodbye. This world misses you much.