Monday, May 21, 2012

Blonde Hair...Big Hearts....Can't Lose!

Yesterday was the Blondes vs. Brunettes flag football game. This girl is not cut out for super intense contact sports. It's always seemed more "natural" to me to flip over a 4-inch wide beam (though those days are long gone...oh're not as easy at 25 as you used to be...).

I had a fabulous time. Check out the photos and video below, and then sneak a peek at what I said today at the Board of Directors meeting for the California Southland chapter of the Alzheimer's Association. What an honor to be asked to speak.

Go #22 (a.k.a. me) and Team Blonde! 
Some of the lovely ladies of Team Blonde!

Adore this girl--one of the first people I met at Pepperdine, one of people I intend on knowing when we're old (and maybe gray?).

November co-captains for the Junior Committee's Walk to End Alzheimer's team!

Team Blonde. Aren't we pretty in our headbands? They are amazing and don't slip at all...check em out at BIC Bands!

On Thursday of last week, Team Blonde’s football practice ended with my face-planting straight into the ground. The dirt on my face that night certainly indicated I’m not meant to be a football player, but as I put the top down on my car and drove home, I felt so unbelievably energized nonetheless. I sang obnoxiously loud to the music I was playing and as I do on many nights felt very grateful to be alive.

When I pulled into my garage though, all of a sudden I felt as though I had been sucker-punched in the stomach, because I realized what had happened that night. I became my mother’s daughter. I didn’t care how ridiculous I looked, because I loved what I was doing. I was having fun, and I was surrounded by amazing people. If there is anything I remember about my mom, it’s that she knew that life was best spent with the people you love, having fun, regardless of how you look or what others think.

I wish I could have called her that night to tell her, “Mom, I think I get it. I think I know how to do this whole thing called truly enjoying life,” but in October, after 10 years battling Alzheimer’s, my mom passed away, and so I instead found myself sitting down to write just how I found myself at this point. 25 years old and without a mom to call to celebrate…and then, without a mom to call for comfort.

When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50. The once bold and fiercely independent woman I knew quickly became a stranger to me. My mom has always been known as a force to be reckoned with, and so it was very odd to watch her go through the initial stages of Alzheimer’s. At first it was the little things: she would forget to pick me up from school, or she would go to pick me up from school instead of work, and we once got lost on a drive home from the airport.

Then, when I was 16, one day my mom asked, “What’s your name again?” I don’t even remember what I said in response. Even as I was writing what I would say today, there is much I feel I have forgotten, because Alzheimer’s just didn’t make sense to me at the time. I could process other diseases, but Alzheimer’s wreaked havoc on my family as we tried to figure out how to handle the loss of my mom in so many ways.

I still remember the afternoon of my high school graduation. At this point, my mom had been battling Alzheimer’s for about 3 years. Just a few weeks before, my family and I had flown to North Carolina to see my brother graduate from college, and after my mom had made it through traveling and attending his graduation, it didn’t occur to us that much might change in a few weeks.

However, a few weeks of early-onset Alzheimer’s had a huge impact. The day of my graduation, my mom refused to get ready to go with us, insisting that the clothing my dad had laid out for her was for children and that he was trying to trick her. Just five minutes before my brother and I were about to leave to go by ourselves, my mom changed her mind and decided to join us. Fortunately, graduation was fairly uneventful, and on our way home, we decided to stop to get some dessert to celebrate that night. As we made our way to the table to sit down, my mom stopped and started yelling towards our table while looking at my dad: “I’m not going with him! He hits me! I am not going with him!”

A moment of uncomfortable silence followed as we decided what to do—I was ready to leave, but my aunt, my mom’s sister, kept insisting: “No, Alex, you deserve to be able to celebrate! We can have dessert! It’s okay!”

With Alzheimer’s and any life-threatening disease, there is this inclination to hold onto what is “normal.” When I was 19, I was diagnosed with cancer, and I remember trying to maintain normalcy as much as possible—so chemo would just be a blip in my life, not the definition of my life at the time. In the very same way, that night at graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” The night of graduation, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do.

However, there is nothing normal about what happened that night or what Alzheimer’s does to anyone. We didn’t have dessert that night—instead, I asserted that “This is my graduation, and I would really just love for us to go home,” because I hoped that that would calm my mom down. My family could feel the heat of the eyes of the restaurant guests on us as my mom continued to claim, “He hits me! He hits me!” and at the moment, all we could do was smile a little with tears in our eyes as we reassured my mom, “It’s okay. We’re going to home, and it will be okay.”

We went home, but in just three years, Alzheimer’s had taken from my mom the ability to enjoy being with her family, to love life as she used to, and so it wasn’t okay. Instead, she feared the people who loved her the most. My parents would have celebrated their 40th wedding anniversary this year, and my dad has always been head-over-heels in love with my mom. It might seem unthinkable that so many years of marriage and happiness can seemingly be erased, but for my mom, those memories were and instead she was very scared. She didn’t know what was going on—where she was, who she was with, and for about a year and a half, she actually was very angry, fighting back against the disease and as a result fighting back against those who took care of her.

After my freshman year in college, my dad finally made the choice for my mom to live in a nursing home. Up until this point, my dad had taken care of her at home; we had a nurse who came nearly every day to help my dad, and though he once said he would never put a hospital bed in our house, my mom had her very own bed in their room. I have never before, and don’t know that I ever will, witnessed or known the kind of love my dad showed for my mom. It absolutely broke his heart for her not to be at home with him, and he scheduled his days around her. My dad is 13 years older than my mom, and he always envisioned growing old with her…with her taking care of him, instead of the other way around. I speak with my dad everyday, and at that time, his daily schedule either consisted of things to do “before I go visit your mom” or “after I go visit your mom.” Even when he was taking me to chemo daily and making sure I was okay, he would make time to go see her once I was home from the hospital and resting.

Three years ago, my dad made the choice to have my mom come back home with him—she had her own room, with a hospital bed and a lift, and a hospice nurse who regularly visited her. He always speaks about the joy he experienced just being able to have breakfast with her, to see her face, to see her smile even though she didn’t know who he was. He loved to be able to say goodnight to her, and when he woke up, he loved to get to see her right away.

A year ago, we found out my mom had cancer. I remember sharing this news with my best friend who to this day also calls my mom “Mom.” She asked me: “Alex, so what happens? Is there surgery? Chemo? What’s the treatment?” …and my heart sunk. I nearly broke down as I explained to her: “Megan, she’s DNR. We’re not going to treat it, and it’s not going to go away. I’m so sorry.” My brother, dad, and I had been fearing and anticipating this moment for years, and so the news of her illness and knowing what was ahead, albeit scary, was not unforeseen. However, for some of our friends and family, it was, and it was very difficult for them.

On September 29th, my dad called me and told me my mom had been having trouble breathing. He also told me the nurse from hospice said unless my mom were to take in more fluids, she would only be able to live for about 2.5 more weeks. Four days later, on October 3rd, at around 8 a.m., my mom passed away. After ten years battling, my mom finally got to rest.

My family, our friends, my dad, we all miss my mom immensely. As I wrote her eulogy and a speech to deliver at her memorial mass, I found myself reaching out to hear stories about my mom. I wish I could have known her better. However, as I said at the beginning, if there is anything I remember about my mom, it’s that she knew that life was best spent with the people you love and having fun. What you do here, at the Alzheimer’s Association, it makes it possible for those of us affected and impacted by this disease to have fun…to be with the people we love, and so I thank you for that.

Being at the Blondes vs. Brunettes game yesterday was an oddly emotional event for me. I was in tears before the game began, wishing my mom could be here but also feeling so blessed by all the amazing people around me and feeling so proud to be able to do this for her. Even today, before I drove over, I texted my team for encouragement since I am not the most eager public speaker, and their support rushed in. I truly was and am blessed to have taken part in the event.

Thank you so for listening to me share my story—the only way I could be happier to be here today speaking on behalf of my mom is if she were actually able to be here with me.


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