(A wonderful wife, mother, grandmother, and friend)
It was almost two weeks ago that Rachel’s mom (Brenda), my mother-in-law, passed away after battling ALS (Lou Gehrig ’s disease) for just over two and a half years. When Brenda was first diagnosed with this horrible disease she was informed that a cure was impossible. Imagine being told you have disease for which there is no hope of survival and that eventually you will lose the ability to walk, talk, eat and breathe. Basically, she was told her whole body would become paralyzed, yet she would retain every single one of her senses. The gravity of the situation was often too much to bear and so Rachel and I turned to running. We ran for strength. We ran for hope. Most of all, we ran for Brenda.
Brenda’s battle with ALS quickly put things into perspective for both of us. We began to realize how precious life is and how important it is to make the most of our time on earth. This meant doing our best to accomplish various goals we had set years before in our lives. One in particular was to run a full marathon. However, both of us were admittedly scared to take on such a feat.
At this time last year Brenda was completely losing the ability to walk. In fact, she was even losing the ability to stand on her own. Her world began to get smaller as the challenge of getting around mounted. At one point it was difficult for her to even go outside because it was nearly impossible for her to get into a vehicle, especially since she needed her wheelchair at all times. After a couple of months of struggling she was able to get a van equipped with the ability to transport her anywhere, which allowed her to live some semblance of a normal life again. I remember shortly after she received the van she was sitting in the wheelchair on the passenger side. She was staring out the window as we were driving to the MDA (Muscular Dystrophy Association) clinic and she was wearing a huge smile. Then, she spoke these exact words that would change my life, “Sometimes it’s nice to just drive around. You don’t even have to be going anywhere. Sometimes it’s nice to just drive around and see what the world is up to.” I wrote it down immediately because to me it sounded like such a profound statement. I remember turning to Rachel and saying, “I will never forget this, I don’t know why, but I won’t.” Her statement was such an endearing way to view the world, at least to me. I began to search for a way to experience the world completely. I wanted to immerse myself in the world and become a part of it. This meant no longer just standing by and watching people run full marathons, but rather, it meant becoming a participant. I didn’t have to be running anywhere in particular, but I had to run to experience life.
Any life can change with a simple diagnosis. Thus, I was determined to take advantage of my health and use it for the benefit of others. I wanted to use it to create hope for not only Brenda, but for everyone affected by ALS. I contacted the MDA (Muscular Dystrophy Association) and advised them that I wanted to help raise money in order to find a cure for ALS. I didn’t know how we would raise the money. I didn’t even know how we would train for a full marathon. What I did know is that I was seeking to create hope in a seemingly hopeless situation. We were not going to stand by and watch Brenda lose her battle to ALS. Rachel and I were going to do anything we could to ensure that hope could be sustained. “Life,” Brenda would often say, “is too short to worry about the small things.” That resonated with us more than ever. ALS was not a small thing. The prospect of my wife losing her wonderful mother was not a small thing.
Here is the video of our story that aired on the Dallas local news.
We put our hearts and efforts into training for months. We ran through the grueling heat of one of Texas’s hottest summers on record. We spent hours on our feet, using our healthy legs to run for all of those who had lost the ability to walk. We knew that what we were going through paled in comparison to what those dealing with ALS were going through. We battled as they battled. We hoped to keep running as they hoped to keep living. In the end we raised over $1500.oo for the MDA in just four months. When Rachel and I ran that full marathon it was the longest, as well as hardest run of our lives. We wanted to stop more than once, but we kept thinking of Brenda and everyone with ALS and somehow we kept moving. When we finished we knew that Brenda still had ALS. We knew that her battle continued, but we knew that we had done everything in our power to keep hope alive.
Brenda battled ALS far better than we battled our full marathon. Eventually, she completely lost her ability to walk, talk, eat and breathe. As she lay in her bed a few weeks ago, nearly completely paralyzed from her head to her toes, yet retaining every one of her senses, Rachel and I sat before her massaging her feet. She smiled at us and it reminded me of the time she told us we “worked well as a team” as we were putting her Christmas decorations up the year before. That’s what Rachel and I have always been – a team. We run together. We laugh together and soon, we knew, we would cry together. I knew that I would need to be there to lift Rachel off the ground when she lost her mother. I knew that I would have to be her strength. I knew nothing would compare to the pain Rachel would have to endure when she lost her mother.
A marathon is easy compared to telling your mother that it’s okay to say goodbye. In fact, I would rather run a marathon every single day then have to tell a loved one that it’s okay to let go. A week and a half ago Rachel and I were standing beside Brenda as she struggled to breathe. Communication had become difficult and if it weren’t for her ability to type on her iPhone with the minimal use of her right hand, things would have been even more difficult. She was still speaking in mumbles, but she was becoming harder to understand. In the days prior she had lost almost complete use of her neck muscles and her use of her right hand was quickly fading. She had become even harder to understand when she tried to talk. She had written to a friend, “Forget what I said about walking being better than talking. It’s like watching the world and not being able to participate.” We were losing her quickly. That morning Rachel’s sister drove her father to have surgery on his eye. Rachel and I, along with a hospice nurse who had shown up that morning for the start of round-the-clock care, waited with Brenda. We were told she had a week or less to live and with heavy hearts we did our best to keep our emotions in check.
The nurse advised me and Rachel that Brenda’s heart was beating rapidly. Her body, it seemed, was shutting down more quickly than expected. She tried to get her heart rate under control, but it was becoming increasingly difficult. The nurse asked Rachel if she had told her mother that it was ok to let go. Tears formed immediately in Rachel’s eyes and I held her hand in mine. She replied, “I’ve told her I love her.” The nurse then asked, “But, have you told her it’s ok to let go?” Rachel’s face dropped and tears swelled in her beautiful eyes. I tried to retain my composure at the thought of my wife having to tell her mother that it was okay to die.
Rachel and I had talked about this moment. We had talked about the possibility of having to tell Brenda to let go. However, none of us wanted to be the one to say it. We knew she was suffering. Brenda’s husband and two daughters knew it more than anyone. Brenda had mentioned a week earlier that she “was ready to go to heaven.” However, she was scared of being alone in heaven. With just me and Rachel by her side at that moment we knew it was important to ease her mind. The nurse had told us that Brenda could hear us through the medication that had been administered to ease her discomfort as her body shut down. Her breathing was scarce, but she did not seem as though she were in pain. We had prayed for God to have mercy on her. We did not want her to suffer. The nurse advised us that she would leave the room in order to give us some time with her. She would give us time to tell her it was ok to let go.
Rachel and I sat beside Brenda. Rachel ran her fingers through her mother’s hair and grabbed her hand and attempted to talk. However, no words escaped. Tears streamed down her face and a faint, “I love you Mom,” came out as a near whisper. I began to sob at the site of my wife trying to tell her mom that it was ok to say goodbye. A rush of emotions engulfed me as I realized that Brenda would no longer be a part of our lives. Rachel was exactly like her mother in so many ways. Brenda had made my wife who she is and I had told her many times how wonderful a job she done with Rachel. She had been the perfect mother-in-law and I found it impossible to say goodbye. After about three minutes of crying Rachel looked at her mother and said through tears, “Mom, I love you so much. You have always been such a wonderful mother. Thank you for everything you have done for me. Thank you for fighting so hard. I’m glad you were at our wedding mom. I love you.” Rachel paused and sought to find the strength to say goodbye. Finally, with great pain she said, “Mom, it is okay to let go. We are going to be ok.” At that point Rachel began to struggle to talk. I ran my hands up and down her back as I asked God to give me the strength to talk to Brenda one last time. I knew Rachel was finding it difficult to speak and I closed my eyes and prayed for God to give me the words she could not say. My wife needed me more than ever. Suddenly, I turned to Rachel and said, “I will talk to her.” Rachel looked lovingly at me through her moist eyes and rose to give her mother a kiss and a hug.
I sat beside Brenda and grabbed her hand. My crying became impossible to control and I immediately realized the toll it had taken on Rachel. With the grace of God I began to speak, “Brenda, I want you to know that I love you so much. I am so glad you got to be at our wedding. I am so glad you got to be part of our special day. I am so glad that Rachel is just like you. I promise you that I will never change her. I want her to always be just like you.” I began to cry harder and struggled to regain composure before I began to speak again. I tried to think about everything that needed to be said to put her mind at ease. I thought about how I needed to speak for everyone. I knew it was important for her to know that Sid, her husband, would be taken care of. I knew that she needed to know that her two daughters would remain close and that her grandson would never forget her. There was so much to say. “Brenda, thank you so much for fighting so hard for all of us. Sid, Jen and Rachel know that you did everything you could for them. You don’t have to fight anymore. None of us want to see you struggle. None of us want to see you in pain. It’s ok to let go. We’re all jealous because you get to go to heaven before us. You get to get there first. I know you are worried about being there by yourself but it’s like Jen said, ‘it’s eternity and we will all be there beside you in the blink of an eye.’ When you get there you are going to be filled with so much love. Oh, it’s going to be beautiful. You will be filled with so much love you won’t know what to do with it. You will be able to walk again. You will be able to move your hands. You will be able to talk again. You will be able to eat anything you want! You will be able to have a big bowl of popcorn (she loved popcorn). It’s going to be wonderful. Don’t worry about us here. I am going to take care of Rachel. We are all going to be ok. We will all remain close – us and Jen and Josh – we’re going to take care of Sid. Plus, we are going to make sure Andrew (her grandson) will never forget you. We will talk about you all of the time and let him know how much you loved him. I promise that when Rachel and I have our children we will tell them all about you and make sure they know how much you would have loved them. We all understand you are going to heaven and it’s ok to let go. I want you to know that I love you so much. I have always loved you. You have always been a great mother-in-law. You always felt like my mother long before Rachel and I got married. I love you very much!” With those last words I rose and gave her a big kiss on her forehead and told her again that I loved her. At that moment she was still breathing as I stepped back and embraced Rachel in my arms as we cried. Rachel then walked over to her mom and said, “I love you so much mom,” and gave her a kiss and a hug. As she pulled back I noticed in that moment Brenda stopped breathing. Everything fell silent. I looked at Rachel and she immediately put her head to her mother’s chest – Brenda was gone. Her passing was peaceful and in many respects, beautiful. She left us in a tranquil state as she was freed from the body that had held her in. In the silence, past our cries and our pain, was love.
It’s impossible to describe the feelings of losing someone so special. I can’t imagine the pain that Rachel feels after losing her mother. After all, nobody, and I mean nobody, loves you like your mother. Brenda was special in so many ways. She was always selfless and continued to be even as the disease consumed her body. She was the epitome of love and her loss is deeply felt. We find solace in knowing that Brenda finished her marathon battle with ALS and received the ultimate prize – a trip to heaven.
Neither I nor Rachel ever regrets running a marathon for hope. Sometimes hope is what we need to get us through the hard times. In fact, we still have hope that a cure will be found for ALS so that others will not have to suffer through this terrible disease. We will continue running for Brenda and everyone suffering from ALS, because running is still an important part of our lives. Training for that marathon helped us deal with the stress of Brenda’s disease and allowed us the ability to; as Brenda put it, “see what the world is up to.” It allowed us to be a part of it – to participate in it. We are going to keep running because it’s important to stay healthy. It’s important to run because we can. It’s important to make the most of our lives and live it to the fullest. I urge you to go out and see what the world us up to. Life is just too short to stay inside.
If you would like to donate to the MDA and help battle ALS you can still do so by visiting our site here.