(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
This October I will once again be running the Chicago Marathon for The ALS Association Greater Chicago Chapter. It seems strange to think that it was two years ago that my sister Jillaine and I began our journey to run to raise money for ALS research and yet I cannot believe how much the decision to run the marathon has impacted my life since then. When I signed up in 2014, I had a feeling deep inside that this was going to be something big. As the ice bucket challenge started to happen and money began pouring in, I believed that was the “something big” but it wasn’t long before I realized there was so much more happening. Don’t get me wrong, raising over $20,000 for ALS was huge but as Jillaine and I trained, we were intentionally meeting people with ALS or people who had been closely affected by ALS. This made the marathon about so much more than honoring our mom and raising some money. It became more personal that we ever imagined. We hadn’t even started the marathon before we knew that this was not going to be a one time thing. Jillaine and I knew that we would be running and raising awareness until a cure is found.
I have chosen to once again do the marathon because I wanted to do something that was difficult and would take intentionality in the training and preparing. The training runs for the marathon were both some of the best and worst times for me. Anyone who has ever trained for a run, bike or other extreme race knows the joy of a great run and the agony of a run where you had to push harder than you ever thought possible for every single step. There is something powerful about experiencing these two extremes and I have found it to be a healing process for me. I am excited that I will be joined in my journey to the marathon by my husband. We know the training with three kids won’t be easy but we are excited to figure out how to make it work.
ALS may not be something that you think about often (other than when you get emails or read blogs from my sister and I), but it has forever impacted my life. Individuals living with ALS rarely get a chance to NOT think about ALS. It is there every day reminding them that their life will never be the same. These amazing and inspiring people living with ALS are not afforded the luxury to forget about ALS for days, weeks and months at a time. Because of this I am going to keep running and asking for donations. I would love for you to join me in this journey and make a donation. I and so many others will be forever grateful.
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!
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:
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.
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.
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.
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
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!
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:
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.