In recognition of the beginning of another NASCAR® racing season and in memory of Cayden Arnold, we share this special story of HoPE from 2008.
Through tragedy, crew member works to put
Earnhardt in victory lane
Mechanic Joey Arnold has remained committed to Dale Earnhardt Jr.'s race team despite recently having a son pass away.
By Chris Jenkins
Associated Press
February 12, 2008
DAYTONA BEACH, Fla. — A blind child who could see. A deaf child who could hear. A miracle is a miracle, no matter how short it lasts.
Dale Earnhardt Jr.’s big victory in his debut with his new team was a speed bump compared to one crew member’s struggle to help his family with life and death — all while continuing his work to put Earnhardt in victory lane.
That’s why Earnhardt’s Hendrick Motorsports crew dedicated their win in Saturday’s Budweiser Shootout exhibition race to teammate Joey Arnold, whose 4-year-old son, Cayden, had died eight days earlier.
Crew chief Tony Eury Jr. choked up with emotion during the postrace news conference, saying how stunned he was to return to the team’s shop in Charlotte from a recent test session and find Arnold already back at work and talking about, of all things, winning the Daytona 500.
“I said ‘Joey, what are you doing here?’ His kid had died the day before,” Eury said. “He said, ‘This is my best chance to win the Daytona 500 and I want to be a part of it.’ ”
Arnold was stunned by the gesture from Eury, who came to the Hendrick team with Earnhardt in the offseason and doesn’t know Arnold well.
“It shows that he’s a class act, and that he has the perspective that there’s bigger things in life than race cars,” Arnold said in a telephone interview from the team’s shop.
But Arnold and his wife still are struggling to come to terms with the loss of their son, who had been battling a birth defect that severely hindered his brain development and confined him to a wheelchair.
By speaking out, Arnold hopes to raise awareness of his son’s condition.
“He was full of life,” Arnold said, pausing as his voice cracked. “His body restricted him, but his mind, his heart was still full of little boy.”
In many ways, it was a miracle that Cayden even was born.
Doctors diagnosed Cayden with holoprosencephaly, a disorder that prevents complete development of the brain, in the womb and told Arnold and his wife, Shira, that he would likely die before being born.
Cayden proved them wrong — and then some.
“We prayed to have 10 minutes with Cayden so we could hold him and love him,” Arnold said. “And God gave us 4½ years.”
Still, the Arnolds were told to lower their expectations. Cayden was born blind and deaf, and wasn’t likely to develop mentally.
“We were told that he would not know love, he would not know who his parents were — basically, that he would most likely be a vegetable,” Arnold said. “And he certainly proved that theory to be wrong.”
With an implant, he could hear. His vision developed. He could recognize colors and objects.
And he certainly knew who his parents were.
“You just knew by his gaze at you, his smile,” Arnold said. “He would move his arms the best that he could with a sense of excitement when he saw you come into a room or spoke to him or touched him. He certainly was aware of people around him, and absolutely knew his family.”
In recent weeks, Cayden started taking bigger steps — literally.
He was beginning treadmill therapy to learn how to walk. He was beginning to learn how to use a computer to speak.
Then one day he was able to eat solid food, not pureed food, at three meals for the first time ever. That night, he surprised his parents by figuring out how to drive his motorized wheelchair to the end of the driveway and back without help.
Then he went to bed and never woke up.
How did the Arnolds explain that to Cayden’s 2-year-old sister, Skylar?
“We told her that Cayden had died and he had gone to heaven and we would be reunited with him some day,” Arnold said. “Her response was, ‘He’s with Jesus and he’s happy.’ ”
Cayden died Feb. 1, a Friday. Arnold went back to the Hendrick shop that Sunday, and told a co-worker that he’d be back into work on Monday.
Arnold used to travel with the team to races, but took a job that didn’t require him to travel after Cayden was born. He’s now Earnhardt’s car setup specialist, meticulously checking and adjusting parts and pieces before each race car leaves the shop.
He finds comfort in the family atmosphere at Hendrick, and a purpose: Winning Sunday’s Daytona 500.
“I really felt that we had a legitimate shot and I wanted to be involved,” Arnold said. “And I also feel like watching Mr. Hendrick go through, and the way that he handled himself during his tragedies, being at Hendrick Motorsports was a comforting place to be.”
Hendrick lost his son, Ricky, his brother, John, two nieces and several key team members when a team plane crashed in 2004. Hendrick called Arnold when he heard about Cayden, and was shocked to hear that he was at the race shop when he answered his cell phone.
“I think he needed to put his energy somewhere, but I don’t know that I could have done that,” Hendrick said.
Arnold isn’t finding it hard to concentrate on his job — not any harder than any other day of his life, anyway.
“Cayden was always in the back of my mind,” Arnold said. “And none of us ever know when our last day is, but due to our situation, it was always back there. I always thought of it. I don’t really find today any harder than two weeks ago.”
The Arnolds laid Cayden to rest last Wednesday. At the funeral, he spoke of salvation. His wife talked about Cayden’s ability to beat the odds.
“She had a blind child that could see, a deaf child that could hear,” Arnold said. “Now we know that he’s in heaven running.”
There are times when I sit in front of a blank screen hoping for something profound or inspiring to write about, and nothing comes to me; therefore, I have nothing to say. Of course, I think it’s actually that I have something to say; I just don’t know how to say it.
At the HPE conference in 2008, I met then 17 year-old Robert from New York. Robert didn’t speak verbally; however, he used an augmentative communication device to help him communicate. Because he didn’t have good control over the movement of his hands and arms, Robert activated the device by moving his head to his left to press a special switch attached to his wheelchair.
Robert gave me an awesome demonstration on how the device worked, and I was so impressed. Contained on the device were pre-recorded messages, phrases, and words; many of them were recorded using a masculine voice whenever possible because what 17 year-old boy wants his voice to sound like his mother’s? Visually, the top of Robert’s device contained words or pictures to represent the various words and phrases available. It was set up in a grid with 4-5 rows down and probably 8 columns across. Each square of the grid contained a little light, and Robert would watch as the device would light up each row. When the appropriate row was lit, Robert would turn his head and select that row. Then, the device would scroll through each square in that row and when the light came on at the appropriate word or phrase Robert wanted to say, he would turn his head to activate the switch. With that movement, the device would activate the pre-recorded word or phrase. Words, phrases, and sentences could also be added and recorded as needed to suit the situation.
Thankfully, Robert was patient with me. At first as he demonstrated the device, I would try to fill in the blanks of what I thought he was trying to say, but I didn’t always get it right. Finally, Robert activated a pre-recorded sentence that said, “It’s my turn to talk now!” I think my eyes bulged out of my head and my jaw dropped open when I realized that my friend Robert was politely telling me to “just shut up and listen”! In that moment, I realized that Robert didn’t need me there to fill in the blanks; he communicated just fine on his own using all of his skills and abilities. He knew what he wanted to say, and he knew how to say it.
There is a song by Matthew West entitled, “Something to Say”, and every time I hear that song, Robert comes to mind. In those moments when I sit in front of the empty screen thinking that I have nothing to say, I think of Robert and what he would say if given the opportunity. Even though he is unable to speak, he certainly has something to say.
It’s a new year and a time when many individuals make personal resolutions. I chose a personal resolution a few years ago, and I’ve been repeating it each year. Like most resolutions, it isn’t easy, and it forces me outside of my comfort zone.
My resolution is that when individuals use the word “retard(ed)” in an offensive or inappropriate manner in my presence, I will speak up and respectfully remind them that the word is hurtful.
The Special Olympics and Best Buddies International has an ongoing campaign entitled “Spread the Word to End the Word”. The goal is to get people to stop and think about their hurtful and disparaging use of the word “retard” and pledge to stop using it. You can visit R-word.org to make a pledge.
March 2, 2011 will mark the third annual day of awareness for “Spread the Word to End the Word.” Youth from around the world will host rallies and encourage others to eliminate the derogatory use of the r-word and promote acceptance and inclusion for people with intellectual disabilities.
R-word.org has a toolkit containing ideas for how you can help to Spread the Word to End the Word. My questions to you are . . .
On a typical day, I have wardrobe drama. That’s where I stand in front of the closet trying to figure out what I’m going to wear. If it’s toward the end of the work week, it also includes wracking my brain in a desperate attempt to remember what I wore earlier in the week. Back when I was younger and more self-centered than I am now, I would tell my mom that I wanted a wardrobe change when I died. I wanted an outfit for the evening calling/visitation, and then I wanted a different outfit for the funeral the next day. My reasoning was that I didn’t want to be caught dead wearing the same outfit twice. Thankfully, I’ve grown up a lot since then.
In recent weeks, the morning drama has been more focused on whether or not to wear mascara. If the mood is good, I wear it. If there’s a possibility of tears, I don’t. After Sammy passed away, I don’t think I wore mascara for at least a year; that was a no-brainer.
Today is a no-mascara, Kleenex-carrying day. Steve and I are going to Cincinnati today for a “celebration” service for Lula, one of Sammy’s friends. I say Sammy’s friend because she and Sammy are hanging out in heaven together now and that is a great homecoming celebration. The tears and mourning are for her family and those who must now continue on without her physically present in their daily lives.
My heart breaks for broken-hearted parents because I know the pain they feel. The emotional pain is obvious to us all, but I know the physical, mental and spiritual pain that they will experience in the coming days, weeks and months, and I’m helpless to do anything about it.
Today, I will witness two parents who will show unbelievable strength and courage. It’s the same strength and courage I exhibited 3 years ago, and while they’re being strong and courageous for everyone else, I will be shedding the tears that they are trying to hold back.
Today, the mascara remains in the tube while the Kleenex doesn’t stand a chance of surviving.
Our hearts and prayers go out to Matt and Julie Oldendick and their family as we learned that their sweet daughter, Lula, passed away on Wednesday morning. Lula was 8 1/2 years old. Below are some photos of Lula from the 2008 HPE Family Conferences. We will miss you, Lula.
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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This is my last post for my “Thirteen Days of Arthur” project, tomorrow is Angel Day, the day our precious Arthur got his wings so he could play in heaven. You may be trying to do the math in your head and think, “hey, tomorrow’s Angel Day, that’s fourteen days”, but I don’t count it. Anyone who has worked for a living knows that you can’t just come in at noon one day and work ’til five and then come in at eight the next day and leave at noon and expect to get paid for two full days. Arthur is no exception, his birthday is a half day and Angel Day is another half day, adding up to only one full day with us.
Looking back on the past (almost) two weeks, I have to say, I’m really surprised at the way I’m feeling about seeing this set of writings come to an end. First of all, I never expected for so many people to read these things…I started this as a tribute as well as a sort of penance, a way of trying to show Arthur from heaven how much I loved him while he was here and how much I still do love and think of him. I thought a few close friends and some of my HPE family may read a couple of these and just chalk it up to another of my crazy projects, I never would have imagined that Arthur would have actual “fans”! I would also like to thank Leslie and Carly for posting these tidbits in the Families for HoPE blog. If I could give any advice to a parent facing what I went through (and am still going through) with Arthur, I would tell that parent to not be afraid. I feel like every regret I have as far as Arthur is concered stems from decisions I made out of fear. Everything I’m proud of came from forcing myself to be brave. Really, the biggest fear in this situation is the unknown, and unfortunately, when it comes to terminal illness and human life, the outcomes aren’t in the hands of humans.
I’m not really surprised that people in the HPE community and parents of special needs kids could relate to Arthur’s story, what surprises me most is how many people with seemingly “normal” lives were drawn to hear more about Arthur’s lessons. I guess, really, the things Arthur taught us were pretty universal: bravery, unconditional love, laughter, spirituality, taking care of yourself physically, living in the moment, being kind to each other, and putting your best foot forward. In a way, I will be glad when this project ends, it took more time and emotion than I ever could have imagined, but I also feel like there is still more that could have been said.
I was going to write a great little send-off story tonight, but instead, I decided to repost a note that I wrote last year right before Angel Day. Funny, when I reread it today, I noticed how uncomfortable and forced my writing seemed then compared to the stories I have been telling for the past several days, the words didn’t flow like they do now, I clearly wasn’t ready to talk much about him yet. I thought about cleaning it up, but decided to leave it exactly as I posted it one year ago because it’s so clear that I was in a way different place then. Those of you who have known me for years have heard the story of Angel Day and fully understand why we call it that, not only did Arthur get his wings that day, but we also met so many angels on Earth:
The Meaning of Angel Day
I’m sure many of you have heard the story of December 11, 2007, but here’s a recap for anyone needing a little inspiration: It was a Tuesday, I was still on maternity leave and Roy had the day off from work. Art had been to his sister Caitlin’s holiday performance the night before and Marena’s 2 days before. It was a very busy week because it was Brittney’s turn to perform that night. Arthur was looking like a very sick little boy. He was very thin and pale, I told Roy just a couple days before that I could no longer change his diapers or see him in less than a onesie…his little ribs and hip bones sticking out just broke my heart. That morning Arthur refused his breakfast, I tried to feed him by dropper and when that didn’t work, I offered him the chance to go to breast (which was very difficult, but he did seem to do ok, just didn’t seem to be able to get as much that way). He also refused his seizure medicine which I worried about, but we set out on this journey with the resolve to do nothing to cause pain or stress to his fragile little body, and that’s what we stuck to. So we all bundled up and drove from home in Vincennes at the time to Terre Haute to finish up our Christmas shopping.
On the way, we stopped in Sullivan at the office I was then working at to give my co workers and a few clients a chance to see him. One client in particular, who I had never really been that close to asked if it was ok if she put him on her church’s prayer chain and shed a few tears in our presence. We wrapped up the visit and headed off to the “big city”. Everywhere we went, people asked to see our baby, asked about his condition and offered prayers and kind words. I have never been approached by so many friendly faces of people who I had never met. Then we walked into Hobby Lobby. Always have loved that store and their corporate culture of open spirituality. Our cashier took one look at Arthur and began to tear up. She could barely finish our transaction. She then asked if she and her friend could pray for him, of course we said yes and didn’t realize she closed her register, went to the back room to retrieve her friend, and laid hands on our son praying for him right there. It was beautiful and haunting. They weren’t praying for his body or health, only for his soul and strength for his family.
We went to several other places that day with Arthur being the center of attention, then got hungry. Taco Bell on 41 South is where we went to lunch, and I swear we met an angel in line there. A young man who appeared to be on a lunch break from a job that required a flannel shirt and steel toed boots didn’t ask about Art’s condition, prognosis, anything. Simply said “may I pray for your baby?” Of course we said yes, and that man’s prayer was eerily similar to the one the ladies at Hobby Lobby said. And the entire noisy restaurant became so quiet you could hear a pin drop. People stopped talking, eating, and deciding what they wanted to order. Time stood still and an entire restaurant of strangers prayed silently for our son, led by one man. It was the most surreal experience I have ever had.
One more stop, TJ Maxx and then we were on the way home. As we were getting into the car to drive home, Roy held Arthur up before putting him in his car seat and said, “kiss mommy goodbye”…where that came from I’ll never know because as a family, we never tell each other goodbye, it’s just too final, but that’s what he said, I kissed Arthur and told him that when we got home he was going to have to eat because he had refused all day. Arthur passed away somewhere between Carlisle and Oaktown on the car ride home. We missed Brittney’s holiday performance and the family came over and we all got to say our goodbyes before the funeral home came to pick him up.
This is why Angel Day is so important to me, it was the day when I saw the best of what humanity had to offer…what a perfect way to live your life, and end it. I like to commit acts of kindness on this day just to remember how good it feels to be thought about and also because you never know if the person you were just nice to will live to see tomorrow.
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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I have talked a lot about Arthur’s lessons helping me to strengthen my body and my emotional state, but I haven’t spoken much about what Arthur taught me spiritually. Probably because that’s the part I’m still working on trying to figure out. I have seen many people who lose someone or have a similar tragedy in their lives blame God or simply lose faith. I’m proud to say I did neither, although am ashamed to say that I really didn’t have much faith to lose before Arthur came along. Never once did I ask “why me?”. I feel like I’ve led a pretty charmed and easy life, so why wouldn’t something like this happen to me? Arthur always had this look on his face like he wanted to say something, I’ve spent the past three years trying to figure out what his message was. During the time before Arthur came along, to be honest, my life wasn’t really going in any direction, I had no path or goals. I think my experience with Arthur was God’s way of smacking me across the back of the head to remind me that He was still there and needed me to pay more attention.
I was born and raised in the Roman Catholic faith. I can remember as a kid sitting in Chatechism class thinking that there were just so many rules and restrictions that I could never be a good Catholic. As soon as I turned sixteen and was responsible for getting myself to church weekly, I just stopped going. It seemed to me like mass was just a repetative waste of time, I also couldn’t stop focusing on the rules, and since one of the rules was to not miss mass, I must not be a person who could practice the Catholic faith. There was a period in my young adulthood where I thought I was invincible, so I didn’t need to worry about my soul, I was pretty sure it wasn’t ever going to leave my body. It’s not that I didn’t believe in an omnipotent creator who watched over us, I never denied that God existed, I just felt like I had better things to do and that I could maintain a relationship with Him on my own terms. As I got older, I felt even more spiritually disconnected. I had done things during my invincible years that I regretted and I was certain that I was going straight to hell for it all. I pretty much gave up on the idea of redemption, so I continued a cycle of doing whatever I wanted, feeling guilty, deciding there’s no way I’d be forgiven, then doing something else that I probably wouldn’t be forgiven for either, repeat. That’s where I was when Arthur came along. I’m ashamed to say that I don’t think I ever prayed for him or prayed for guidance in our situation. Arthur and I did have some deep theological conversations involving what he was to expect once he got to heaven, but I never tried to make any sort of spiritual connection myself. I’m not worried about this in hindsight because we had so many people outside of our nuclear family who were doing some serious praying for us. We did have the foresight to have him baptized in the hospital, I can’t imagine the guilt I would feel today had Roy not insisted on that one act. It wasn’t until we were sitting in the funeral home the day after Arthur passed talking to the funeral director about what kind of burial service we would like for him that I realized that I didn’t have any faith and needed to find myself some soon.
At Arthur’s Right of Christian Burial, I prayed for the first time in over twenty years. I prayed that Arthur’s soul would be saved and taken to heaven. I prayed that our other kids would find peace and healing. I prayed that Roy would look back on the time with his son as one of the best times of his life. I prayed for other families who were going through the same thing. I prayed for everyone but myself. It semed that a lot of people gave us angels as sympathy gifts, and when we got home, we scattered them around the house. I think it’s the first time I ever looked at an angel and saw the true beauty and inspiration that these little works of art emitted. Having these little symbols of faith propped around the house made me start searching for my soul. I knew in my heart that Arthur was here to give me a message and that message was an order straight from God. I entered this soul-searching phase at about the same time I was getting pretty good at walking and hiking. I would wander around looking at everyday things with fresh wonder and started seeing all life and objects as precious gifts from God, but I was still having a hard time embracing the idea of organized religion.
This past summer, Roy decided to take a leap of faith, himself. He signed up to attend the classes required to convert to Catholicism. I chose to attend with him, still not sure if I was willing to follow all of those terrible rules, but I would go to the classes and learn all I could about the faith I grew up with but didn’t understand. Honestly, I was a bit lackluster about the whole idea, but Roy wanted it and I wanted to support his decision, so I thought I would check it out. After the first few weeks, I was learning about the church and becoming more comfortable with discussing faith with other class members. I was really starting to warm up to the idea of rejoining the church when I was presented with an amazing opportunity. I went to San Diego for a work conference. I had one day to pretty much do nothing but sightsee, so while the rest of the midwesterners were off finding out if tequila really tasted better that close to Mexico, I decided to visit the Mission. I have never felt that kind of holy energy in my life. I was moved to take my shoes off and wander the grounds barefoot, I wanted to be as connected with the earth as I could. I walked around, read all of the little markers that told stories about different priests and events that made the Mission such a holy place. I stood in the garden and wept, not because I was sad, just because I needed to be cleansed. I knelt before the alter and prayed, as I sat quietly in the sanctuary, I felt a surge of energy followed by an indescribable peace. That is the moment I knew, beyond a question, that I wanted to rejoin the church. It no longer seemed like too many rules, I started seeing it as a faith with specific guidelines that I could follow. Instead of repetition, I discovered a comfort in long-standing tradition. Instead of letting my soul wander, I saw a path to guide it along. When I came back home, I had a new-found enthusiasm for the faith I grew up in.
I still have a lot to work on. I have only been back from that life-changing trip for about two months and am still actively learning as much about why we do what I had always taken for granted as a child. I haven’t been to confession in over twenty five years. This is something I’m really dreading, not only will I need to fess up to some ugly skeletons I collected during my invincible years, but I will also need to confess some of the decisions I made on Arthur’s behalf because I know that some of the things we did (and didn’t do) for him were against the teachings of the Catholic Church. I’m still putting off confession because I know that this sort of deep-cleaning of the soul will be very taxing, but I’m no longer afraid that God won’t forgive me, I know He will. Just as Arthur felt when Roy held him, I now feel safe and protected in my (Heavenly) Father’s arms.
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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Something that I didn’t understand when I was first laid eyes on him, and will never be able to explain is how cute Arthur was physically. I know I dwell a lot on Arthur’s appearance, but I just can’t get over how shocked I was at how adorable I found him to be. The physicians and social workers who met with us before his birth really tried to drive home the idea that it didn’t matter what he looked like, we would think he was beautiful because he was ours. Really it was just a nice way to tell us that our son had a face that only a mother could love. From what I have seen, kids with HPE tend to have a certain “look” and there are about 4 “types” of look. Every time I stumble upon one of these kids, I instantly see beauty, so I’m pretty sure it’s not a face that only a mother could love. Total strangers will look at Arthur’s picture on my office desk and go on and on about how cute he was, sometimes not looking away from the picture at all during their time with me. I feel that these children have the gift of cuteness so we, as adults, will not be afraid of them or pity them, but be drawn to them.
Arthur was a very quiet baby. I don’t believe he ever actually cried, he made noises when he was in need, but it was never a full-on cry. After suffering through three months of colic from Marena when she was a newborn, this was really a treat. I knew that people who are dying go through a “conservation mode” physically and nonessential functions start to shut down. With Arthur, he conserved energy by not crying. This energy conservation is also a gift to a parent who is stressed out, undernourished, sleep deprived, depressed. The only thing worse than having a sick baby to take care of is to have a baby who is sick and crying. No matter how bad I was feeling, he would always raise my spirits by his peaceful nature. This is not to say that Arthur was completely mute, however. He babbled a lot. There was this funny little misfire of neurons that went on with him that, on paper, seem like they would be very disturbing, but in reality this behavior was so cute and quirky that it didn’t scare me at all. He would spend most of his waking hours with one arm extended over his head and the hand fisted. He would then simultaneously make a noise that was somewhere between a quack and a cluck and open and close his fist to the rhythm of his voice. When we would put him down for sleep, he would spend hours making that little noise and when I would look over at the bassinet in the dark, I would see the silhouette of his little hand opening and closing. He began to do this less and less as his life grew closer to the end. I will always remember and miss the sound of that little voice quacking away all night long.
I have had some people comment to me about how scary the time Arthur was up all night with seizures must have been for me. Even though a seizure is a scary occurrence, babies look so much different when they have them than adults do. I didn’t even know he was having them regularly until the first nurse from Hospice was at our house doing our intake and he had one right in front of her and she pointed it out to me. For anyone who has never seen a baby have a seizure, it’s usually just a jerky set of movements that are centered around the mid-line of the body. Arthur looked like he was playing air drums when he would have one, he would line up his fists to the center of his body and they would beat up and down somewhat rhythmicly. Then again, another serious health concern that should be terrifying was expressed in such a cute and seemingly harmless way, I was able to keep my head level and calm him down during and after the seizures.
Something about Arthur didn’t seem real to me, with his pear shaped head, all of that fuzzy hair, and his jerky movements, he appeared more as a cartoon character or puppet than a real live baby. I feel that Arthur’s super-human looks and mannerisms were more than just a genetic anomaly, they were a gift. People always try to tell me that God will never give you more than you can handle, but Arthur taught me that this isn’t necessarily true. God gave me way more than I could handle with Arthur, but He also gave me the tools I needed to get through a terrible situation and come out on the other side a stronger person. The most essential tools He handed me were Arthur’s suave good looks and actions.
Probably my favorite picture of Arthur. His eyes are open and he looks like he's smiling. What a handsome little man he was!
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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I really never thought much about fitness before Arthur came into my life. I have dieted, worked out to make myself look better, yo-yo’d with my weight, size, and fitness level, but never wanted to get strong, healthy, and balanced until I met him. Actually, it wasn’t until some time passed after I lost him that I decided this is what I wanted to do, and I’m not even sure if this was something I did want for a while.
After I delivered Arthur, it took no time at all for me to return to my pre-pregnancy size, I even dropped about nine pounds below my pre-pregnancy weight by the time I returned to work six weeks after I delivered. I’ve always said that birthing a baby is the best weight loss program I could possibly try, I was about twenty pounds below my pre-pregnancy weight six weeks after I delivered Marena. The difference was, after Arthur was born, I just wasn’t hungry. I would eat some strongly-flavored foods here and there so my breastmilk would have some variety in flavor for Arthur to try, but for the most part, I would only eat if Roy wanted to not eat alone. This was likely my first sign of depression, not only postpartum, but overwhelming dread of taking care of a special needs child. I was afraid that he would die at any moment, but I was also afraid that he may live for a long time with no real quality of life. I knew I was prone to depression, so I had my physician order an antidepressant. Since I am a lactation counselor, I knew the medication was safe to take while I was nursing, I had the resources to back it up, but my physician wasn’t so sure about this and essentially gave me a choice. Of course I chose to nurse my son over medicating my baby blues away. Once Arthur passed, I mourned him deeply. I felt like my sadness was to be expected and ignored some basic signs of what I now look back on as major clinical depression. I was weepy and irritable at inappropriate times. I was always mad at Roy because he wasn’t feeling the same way I was. I was short with the kids, and really just ignored them because I didn’t want them to see what I was becoming. The idea of being institutionalized actually sounded like a comfort to me, I really just wanted to escape reality. I also really didn’t want to be on this earth anymore, the only person I wanted to be with was Arthur. From February until October, I managed to gain about forty pounds, I was heavier than I was the day I delivered Arthur. I refused to seek medical attention, I also refused any sort of chemical to medicate myself. I wanted to feel the open, raw wounds in my soul. I enjoyed the pain and hated everyone and everything that wouldn’t allow me to hurt. What I found out later in grief counseling is that you have to hurt to begin healing, and I had this hurting thing down pat. My job performance was suffering and I was holding onto friendships by a thread. I wanted to just drop dead, and at the rate I was going, I would have probably gotten what I wanted one way or another pretty soon.
I was pretty close to rock bottom when a coworker, Mindi, suggested an absolutely insane idea. She is an avid runner and said there was a half marathon coming up in May and that I should think about training for it. I reminded her that I didn’t run, she countered with the fact that there is also a walking division. It doesn’t matter how I do it, it only matters that I finish. Of course Mindi happened to mention this idea in the presence of Courtney who thought it sounded like a load of fun and that of course I should do it, and of course she wants to do it, and we could both totally do it (sometimes her enthusiasm is hard to say no to). Next thing I know, I’m signing up for the half marathon and the local training group. I received my training packet and decided this was it. If Arthur, a baby who was never supposed to have lived long enough to be born could live for thirteen days, there is no reason that his mother, who was morbidly obese and clinically depressed couldn’t walk for thirteen miles.
The first day of training was terrible. I didn’t realize how out of shape I had become, I was huffing and puffing and hurting, but I walked a whole mile. Roy looked at me when I walked through the door and thought that he wouldn’t blame me if I never went out again, but I did. It was a sixteen week program and I decided that if it was too hard after a month that I would quit. The first month passed and I thought yes, this program is just too hard. But I had no intention of quitting. It hurt to log all of those miles, but I liked that I could pair physical pain with emotional pain, and would always set goals to make myself hurt more on the outside than the inside. I discovered that when it was just my thoughts, the road, and me, I felt a sense of peace and well-being that I’m not sure if I ever have had before. There were days when I would go out and come back frustrated, crying, and in pain, but I never stopped. Looking back, I feel like the tears and pain were just the anger, depression, and hurt flowing out instead of continuing to poison me. I ended up completing the half marathon without setting any land-speed records or hurting myself. The most amazing part of the end of this story is that it wasn’t the end of the story at all. I continued to walk for long distances even after the race was over. I live 2.5 miles from my office and I try to commute by foot most days, logging about 25 miles a week in commuting time plus I like to go for longer treks on the weekends. I have now completed a total of three half marathons and my times keep improving. I have also, just recently, taken up jogging and would like to run at least a good portion of my next half marathon. The best part of this story is that I am enjoying an internal peace and tranquility now that I have never known. I feel that that big open wound in my spirit that I liked to leave exposed and show off to whoever would look is now closed. Yes, there is an ugly scar there, but scars tell a story just like I am telling Arthur’s story.
During the innocent time that I thought I was pregnant with a healthy baby, Roy and I would imagine what Arthur would be like, and I would say that I just knew that he would always be in trouble at daycare for using his running feet instead of his walking feet. We were crushed when Arthur’s prognosis was to never be able to run, let alone walk. Since Arthur never got the opportunity for his feet to walk or run, I will do it in his honor every chance I get.
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock.
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What in the world would possess the father of a one week old terminally ill baby with a bilateral cleft and severe feeding problems to place a curly fry in said child’s fist? I can only come up with one possible explanation…he wanted to live in the moment because it may never happen again.
Here’s the setup: Marena needed some dressy clothes to wear to a band concert, have our family pictures taken in, and it was understood although never said out loud that she would need something appropriate to wear to a funeral. On Roy’s day off, Marena and I decided to take off, just the two of us, and shop for some clothes. Roy and Arthur were left home alone to fend for themselves. I figured everything would be fine, we wouldn’t be gone for that long and there was plenty of breast milk in the fridge. It would give the boys some man time together as well as let me focus some one on one time on my daughter who had been an only child for the past 12 years. We probably did take longer than we thought, after we found some clothes, we also decided to grab a few groceries. Roy called while we were in line at the grocery store and asked if I could just pick up some fast food on the way home because he didn’t want to take any alone time away from Arthur to cook anything. The closest and most convenient drive through was Arby’s, I picked up some sandwiches and curly fries for us all. When I got home, I sent Marena to her room to put her new clothes on hangers and I handed the Arby’s bag to Roy to set the food out on the dining table. Meanwhile, I was putting away groceries. When I finally walked around the corner into the dining room, I saw Roy eating a curly fry and Arthur was in his other arm squeezing a curly fry of his own in his tiny little fist. When Arthur spotted me, he raised his fry in the air and started swinging it like a cowboy getting ready to rope a calf. I was absolutely horrified. I snatched the limp fry out of Arthur’s fist and pried his little fingers apart to remove the rest of the greasy potato from his hand. I started to admonish Roy for his lapse in judgment when it hit me that he actually showed very wise judgment. Roy gave Arthur a curly fry to swing around that night because he didn’t know if he would ever have Arthur and a curly fry in the same room ever again. Now that I think about it, Roy’s argument that Arthur would have never been able to get the fry into his mouth was valid. Arthur’s motor skills were rapidly declining and he absolutely would not have had the coordination to stuff that fry in his face. Roy just wanted Arthur to experience everything that the rest of us were experiencing.
It was really a luxury to have an infant who we knew we had limited time with. Arthur got to go everywhere, not sure if during the cold, flu, and RSV season we would have taken him out and about so much had we not set out to fill his short life with high quality experiences. Arthur got to go to two of his sisters’ musical performances in crowded school auditoriums. He got to Christmas shop at the mall. He got to go to some of our favorite restaurants and experience the strong flavors that made it to my breastmilk. He was held and touched by family, friends, and strangers. He got to snuggle with the kitties and went outside once to touch the dog (neither of them seemed too impressed, so we didn’t try that one again). Most importantly, Arthur got to hold a curly fry. Four hours after I successfully removed the curly fry from his clutches, Arthur had a seizure, then another, then another. Arthur’s seizures became stronger and progressively worse throughout the night, he hadn’t been on any seizure medication until that point. By the time his hospice nurse arrived at the house with his prescription, I had been up with him all night and he was purple. I was sure I was losing him, but after his first dose of phenylbarb, the seizures ceased. The evening that Arthur grasped his first curly fry preceded the night that Arthur’s seizures reduced his motor skills significantly. That curly fry was the last thing I ever had to pry out of his hand, because by the following morning, he had lost his ability to grasp things.
Arthur sleeping off the seizure meds. Still purple around his little eyes from those terrible seizures.
Posted: February 12, 2011 by Leslie, Sammy's mom
HoPE goes to victory lane…
In recognition of the beginning of another NASCAR® racing season and in memory of Cayden Arnold, we share this special story of HoPE from 2008.
Through tragedy, crew member works to put
Earnhardt in victory lane
By Chris Jenkins
Associated Press
February 12, 2008
DAYTONA BEACH, Fla. — A blind child who could see. A deaf child who could hear. A miracle is a miracle, no matter how short it lasts.
Dale Earnhardt Jr.’s big victory in his debut with his new team was a speed bump compared to one crew member’s struggle to help his family with life and death — all while continuing his work to put Earnhardt in victory lane.
That’s why Earnhardt’s Hendrick Motorsports crew dedicated their win in Saturday’s Budweiser Shootout exhibition race to teammate Joey Arnold, whose 4-year-old son, Cayden, had died eight days earlier.
Crew chief Tony Eury Jr. choked up with emotion during the postrace news conference, saying how stunned he was to return to the team’s shop in Charlotte from a recent test session and find Arnold already back at work and talking about, of all things, winning the Daytona 500.
“I said ‘Joey, what are you doing here?’ His kid had died the day before,” Eury said. “He said, ‘This is my best chance to win the Daytona 500 and I want to be a part of it.’ ”
Arnold was stunned by the gesture from Eury, who came to the Hendrick team with Earnhardt in the offseason and doesn’t know Arnold well.
“It shows that he’s a class act, and that he has the perspective that there’s bigger things in life than race cars,” Arnold said in a telephone interview from the team’s shop.
But Arnold and his wife still are struggling to come to terms with the loss of their son, who had been battling a birth defect that severely hindered his brain development and confined him to a wheelchair.
By speaking out, Arnold hopes to raise awareness of his son’s condition.
“He was full of life,” Arnold said, pausing as his voice cracked. “His body restricted him, but his mind, his heart was still full of little boy.”
In many ways, it was a miracle that Cayden even was born.
Doctors diagnosed Cayden with holoprosencephaly, a disorder that prevents complete development of the brain, in the womb and told Arnold and his wife, Shira, that he would likely die before being born.
Cayden proved them wrong — and then some.
“We prayed to have 10 minutes with Cayden so we could hold him and love him,” Arnold said. “And God gave us 4½ years.”
Still, the Arnolds were told to lower their expectations. Cayden was born blind and deaf, and wasn’t likely to develop mentally.
“We were told that he would not know love, he would not know who his parents were — basically, that he would most likely be a vegetable,” Arnold said. “And he certainly proved that theory to be wrong.”
With an implant, he could hear. His vision developed. He could recognize colors and objects.
And he certainly knew who his parents were.
“You just knew by his gaze at you, his smile,” Arnold said. “He would move his arms the best that he could with a sense of excitement when he saw you come into a room or spoke to him or touched him. He certainly was aware of people around him, and absolutely knew his family.”
In recent weeks, Cayden started taking bigger steps — literally.
He was beginning treadmill therapy to learn how to walk. He was beginning to learn how to use a computer to speak.
Then one day he was able to eat solid food, not pureed food, at three meals for the first time ever. That night, he surprised his parents by figuring out how to drive his motorized wheelchair to the end of the driveway and back without help.
Then he went to bed and never woke up.
How did the Arnolds explain that to Cayden’s 2-year-old sister, Skylar?
“We told her that Cayden had died and he had gone to heaven and we would be reunited with him some day,” Arnold said. “Her response was, ‘He’s with Jesus and he’s happy.’ ”
Cayden died Feb. 1, a Friday. Arnold went back to the Hendrick shop that Sunday, and told a co-worker that he’d be back into work on Monday.
Arnold used to travel with the team to races, but took a job that didn’t require him to travel after Cayden was born. He’s now Earnhardt’s car setup specialist, meticulously checking and adjusting parts and pieces before each race car leaves the shop.
He finds comfort in the family atmosphere at Hendrick, and a purpose: Winning Sunday’s Daytona 500.
“I really felt that we had a legitimate shot and I wanted to be involved,” Arnold said. “And I also feel like watching Mr. Hendrick go through, and the way that he handled himself during his tragedies, being at Hendrick Motorsports was a comforting place to be.”
Hendrick lost his son, Ricky, his brother, John, two nieces and several key team members when a team plane crashed in 2004. Hendrick called Arnold when he heard about Cayden, and was shocked to hear that he was at the race shop when he answered his cell phone.
“I think he needed to put his energy somewhere, but I don’t know that I could have done that,” Hendrick said.
Arnold isn’t finding it hard to concentrate on his job — not any harder than any other day of his life, anyway.
“Cayden was always in the back of my mind,” Arnold said. “And none of us ever know when our last day is, but due to our situation, it was always back there. I always thought of it. I don’t really find today any harder than two weeks ago.”
The Arnolds laid Cayden to rest last Wednesday. At the funeral, he spoke of salvation. His wife talked about Cayden’s ability to beat the odds.
“She had a blind child that could see, a deaf child that could hear,” Arnold said. “Now we know that he’s in heaven running.”
Used with permission of The Associated Press © 2008 All Rights Reserved.
Posted: February 11, 2011 by Leslie, Sammy's mom
Something to say…
There are times when I sit in front of a blank screen hoping for something profound or inspiring to write about, and nothing comes to me; therefore, I have nothing to say. Of course, I think it’s actually that I have something to say; I just don’t know how to say it.
At the HPE conference in 2008, I met then 17 year-old Robert from New York. Robert didn’t speak verbally; however, he used an augmentative communication device to help him communicate. Because he didn’t have good control over the movement of his hands and arms, Robert activated the device by moving his head to his left to press a special switch attached to his wheelchair.
Robert gave me an awesome demonstration on how the device worked, and I was so impressed. Contained on the device were pre-recorded messages, phrases, and words; many of them were recorded using a masculine voice whenever possible because what 17 year-old boy wants his voice to sound like his mother’s? Visually, the top of Robert’s device contained words or pictures to represent the various words and phrases available. It was set up in a grid with 4-5 rows down and probably 8 columns across. Each square of the grid contained a little light, and Robert would watch as the device would light up each row. When the appropriate row was lit, Robert would turn his head and select that row. Then, the device would scroll through each square in that row and when the light came on at the appropriate word or phrase Robert wanted to say, he would turn his head to activate the switch. With that movement, the device would activate the pre-recorded word or phrase. Words, phrases, and sentences could also be added and recorded as needed to suit the situation.
Thankfully, Robert was patient with me. At first as he demonstrated the device, I would try to fill in the blanks of what I thought he was trying to say, but I didn’t always get it right. Finally, Robert activated a pre-recorded sentence that said, “It’s my turn to talk now!” I think my eyes bulged out of my head and my jaw dropped open when I realized that my friend Robert was politely telling me to “just shut up and listen”! In that moment, I realized that Robert didn’t need me there to fill in the blanks; he communicated just fine on his own using all of his skills and abilities. He knew what he wanted to say, and he knew how to say it.
There is a song by Matthew West entitled, “Something to Say”, and every time I hear that song, Robert comes to mind. In those moments when I sit in front of the empty screen thinking that I have nothing to say, I think of Robert and what he would say if given the opportunity. Even though he is unable to speak, he certainly has something to say.
Posted: January 1, 2011 by Leslie, Sammy's mom
Resolutions
It’s a new year and a time when many individuals make personal resolutions. I chose a personal resolution a few years ago, and I’ve been repeating it each year. Like most resolutions, it isn’t easy, and it forces me outside of my comfort zone.
My resolution is that when individuals use the word “retard(ed)” in an offensive or inappropriate manner in my presence, I will speak up and respectfully remind them that the word is hurtful.
The Special Olympics and Best Buddies International has an ongoing campaign entitled “Spread the Word to End the Word”. The goal is to get people to stop and think about their hurtful and disparaging use of the word “retard” and pledge to stop using it. You can visit R-word.org to make a pledge.
March 2, 2011 will mark the third annual day of awareness for “Spread the Word to End the Word.” Youth from around the world will host rallies and encourage others to eliminate the derogatory use of the r-word and promote acceptance and inclusion for people with intellectual disabilities.
R-word.org has a toolkit containing ideas for how you can help to Spread the Word to End the Word. My questions to you are . . .
Can one person make a difference?
Can you be that one person?
Posted: December 28, 2010 by Leslie, Sammy's mom
It’s a no-mascara, Kleenex-carrying kind of day…
On a typical day, I have wardrobe drama. That’s where I stand in front of the closet trying to figure out what I’m going to wear. If it’s toward the end of the work week, it also includes wracking my brain in a desperate attempt to remember what I wore earlier in the week. Back when I was younger and more self-centered than I am now, I would tell my mom that I wanted a wardrobe change when I died. I wanted an outfit for the evening calling/visitation, and then I wanted a different outfit for the funeral the next day. My reasoning was that I didn’t want to be caught dead wearing the same outfit twice. Thankfully, I’ve grown up a lot since then.
In recent weeks, the morning drama has been more focused on whether or not to wear mascara. If the mood is good, I wear it. If there’s a possibility of tears, I don’t. After Sammy passed away, I don’t think I wore mascara for at least a year; that was a no-brainer.
Today is a no-mascara, Kleenex-carrying day. Steve and I are going to Cincinnati today for a “celebration” service for Lula, one of Sammy’s friends. I say Sammy’s friend because she and Sammy are hanging out in heaven together now and that is a great homecoming celebration. The tears and mourning are for her family and those who must now continue on without her physically present in their daily lives.
My heart breaks for broken-hearted parents because I know the pain they feel. The emotional pain is obvious to us all, but I know the physical, mental and spiritual pain that they will experience in the coming days, weeks and months, and I’m helpless to do anything about it.
Today, I will witness two parents who will show unbelievable strength and courage. It’s the same strength and courage I exhibited 3 years ago, and while they’re being strong and courageous for everyone else, I will be shedding the tears that they are trying to hold back.
Today, the mascara remains in the tube while the Kleenex doesn’t stand a chance of surviving.
~Leslie
Posted: December 24, 2010 by Leslie, Sammy's mom
With sympathy…
Our hearts and prayers go out to Matt and Julie Oldendick and their family as we learned that their sweet daughter, Lula, passed away on Wednesday morning. Lula was 8 1/2 years old. Below are some photos of Lula from the 2008 HPE Family Conferences. We will miss you, Lula.
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Posted: December 11, 2010 by Leslie, Sammy's mom
Encore! The Meaning of Angel Day, Thirteen Days of Arthur Style
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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This is my last post for my “Thirteen Days of Arthur” project, tomorrow is Angel Day, the day our precious Arthur got his wings so he could play in heaven. You may be trying to do the math in your head and think, “hey, tomorrow’s Angel Day, that’s fourteen days”, but I don’t count it. Anyone who has worked for a living knows that you can’t just come in at noon one day and work ’til five and then come in at eight the next day and leave at noon and expect to get paid for two full days. Arthur is no exception, his birthday is a half day and Angel Day is another half day, adding up to only one full day with us.
Looking back on the past (almost) two weeks, I have to say, I’m really surprised at the way I’m feeling about seeing this set of writings come to an end. First of all, I never expected for so many people to read these things…I started this as a tribute as well as a sort of penance, a way of trying to show Arthur from heaven how much I loved him while he was here and how much I still do love and think of him. I thought a few close friends and some of my HPE family may read a couple of these and just chalk it up to another of my crazy projects, I never would have imagined that Arthur would have actual “fans”! I would also like to thank Leslie and Carly for posting these tidbits in the Families for HoPE blog. If I could give any advice to a parent facing what I went through (and am still going through) with Arthur, I would tell that parent to not be afraid. I feel like every regret I have as far as Arthur is concered stems from decisions I made out of fear. Everything I’m proud of came from forcing myself to be brave. Really, the biggest fear in this situation is the unknown, and unfortunately, when it comes to terminal illness and human life, the outcomes aren’t in the hands of humans.
I’m not really surprised that people in the HPE community and parents of special needs kids could relate to Arthur’s story, what surprises me most is how many people with seemingly “normal” lives were drawn to hear more about Arthur’s lessons. I guess, really, the things Arthur taught us were pretty universal: bravery, unconditional love, laughter, spirituality, taking care of yourself physically, living in the moment, being kind to each other, and putting your best foot forward. In a way, I will be glad when this project ends, it took more time and emotion than I ever could have imagined, but I also feel like there is still more that could have been said.
I was going to write a great little send-off story tonight, but instead, I decided to repost a note that I wrote last year right before Angel Day. Funny, when I reread it today, I noticed how uncomfortable and forced my writing seemed then compared to the stories I have been telling for the past several days, the words didn’t flow like they do now, I clearly wasn’t ready to talk much about him yet. I thought about cleaning it up, but decided to leave it exactly as I posted it one year ago because it’s so clear that I was in a way different place then. Those of you who have known me for years have heard the story of Angel Day and fully understand why we call it that, not only did Arthur get his wings that day, but we also met so many angels on Earth:
The Meaning of Angel Day
I’m sure many of you have heard the story of December 11, 2007, but here’s a recap for anyone needing a little inspiration: It was a Tuesday, I was still on maternity leave and Roy had the day off from work. Art had been to his sister Caitlin’s holiday performance the night before and Marena’s 2 days before. It was a very busy week because it was Brittney’s turn to perform that night. Arthur was looking like a very sick little boy. He was very thin and pale, I told Roy just a couple days before that I could no longer change his diapers or see him in less than a onesie…his little ribs and hip bones sticking out just broke my heart. That morning Arthur refused his breakfast, I tried to feed him by dropper and when that didn’t work, I offered him the chance to go to breast (which was very difficult, but he did seem to do ok, just didn’t seem to be able to get as much that way). He also refused his seizure medicine which I worried about, but we set out on this journey with the resolve to do nothing to cause pain or stress to his fragile little body, and that’s what we stuck to. So we all bundled up and drove from home in Vincennes at the time to Terre Haute to finish up our Christmas shopping.
On the way, we stopped in Sullivan at the office I was then working at to give my co workers and a few clients a chance to see him. One client in particular, who I had never really been that close to asked if it was ok if she put him on her church’s prayer chain and shed a few tears in our presence. We wrapped up the visit and headed off to the “big city”. Everywhere we went, people asked to see our baby, asked about his condition and offered prayers and kind words. I have never been approached by so many friendly faces of people who I had never met. Then we walked into Hobby Lobby. Always have loved that store and their corporate culture of open spirituality. Our cashier took one look at Arthur and began to tear up. She could barely finish our transaction. She then asked if she and her friend could pray for him, of course we said yes and didn’t realize she closed her register, went to the back room to retrieve her friend, and laid hands on our son praying for him right there. It was beautiful and haunting. They weren’t praying for his body or health, only for his soul and strength for his family.
We went to several other places that day with Arthur being the center of attention, then got hungry. Taco Bell on 41 South is where we went to lunch, and I swear we met an angel in line there. A young man who appeared to be on a lunch break from a job that required a flannel shirt and steel toed boots didn’t ask about Art’s condition, prognosis, anything. Simply said “may I pray for your baby?” Of course we said yes, and that man’s prayer was eerily similar to the one the ladies at Hobby Lobby said. And the entire noisy restaurant became so quiet you could hear a pin drop. People stopped talking, eating, and deciding what they wanted to order. Time stood still and an entire restaurant of strangers prayed silently for our son, led by one man. It was the most surreal experience I have ever had.
One more stop, TJ Maxx and then we were on the way home. As we were getting into the car to drive home, Roy held Arthur up before putting him in his car seat and said, “kiss mommy goodbye”…where that came from I’ll never know because as a family, we never tell each other goodbye, it’s just too final, but that’s what he said, I kissed Arthur and told him that when we got home he was going to have to eat because he had refused all day. Arthur passed away somewhere between Carlisle and Oaktown on the car ride home. We missed Brittney’s holiday performance and the family came over and we all got to say our goodbyes before the funeral home came to pick him up.
This is why Angel Day is so important to me, it was the day when I saw the best of what humanity had to offer…what a perfect way to live your life, and end it. I like to commit acts of kindness on this day just to remember how good it feels to be thought about and also because you never know if the person you were just nice to will live to see tomorrow.
Posted: December 10, 2010 by Leslie, Sammy's mom
Day 12: Safe and protected in my Father’s arms…
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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I have talked a lot about Arthur’s lessons helping me to strengthen my body and my emotional state, but I haven’t spoken much about what Arthur taught me spiritually. Probably because that’s the part I’m still working on trying to figure out. I have seen many people who lose someone or have a similar tragedy in their lives blame God or simply lose faith. I’m proud to say I did neither, although am ashamed to say that I really didn’t have much faith to lose before Arthur came along. Never once did I ask “why me?”. I feel like I’ve led a pretty charmed and easy life, so why wouldn’t something like this happen to me? Arthur always had this look on his face like he wanted to say something, I’ve spent the past three years trying to figure out what his message was. During the time before Arthur came along, to be honest, my life wasn’t really going in any direction, I had no path or goals. I think my experience with Arthur was God’s way of smacking me across the back of the head to remind me that He was still there and needed me to pay more attention.
I was born and raised in the Roman Catholic faith. I can remember as a kid sitting in Chatechism class thinking that there were just so many rules and restrictions that I could never be a good Catholic. As soon as I turned sixteen and was responsible for getting myself to church weekly, I just stopped going. It seemed to me like mass was just a repetative waste of time, I also couldn’t stop focusing on the rules, and since one of the rules was to not miss mass, I must not be a person who could practice the Catholic faith. There was a period in my young adulthood where I thought I was invincible, so I didn’t need to worry about my soul, I was pretty sure it wasn’t ever going to leave my body. It’s not that I didn’t believe in an omnipotent creator who watched over us, I never denied that God existed, I just felt like I had better things to do and that I could maintain a relationship with Him on my own terms. As I got older, I felt even more spiritually disconnected. I had done things during my invincible years that I regretted and I was certain that I was going straight to hell for it all. I pretty much gave up on the idea of redemption, so I continued a cycle of doing whatever I wanted, feeling guilty, deciding there’s no way I’d be forgiven, then doing something else that I probably wouldn’t be forgiven for either, repeat. That’s where I was when Arthur came along. I’m ashamed to say that I don’t think I ever prayed for him or prayed for guidance in our situation. Arthur and I did have some deep theological conversations involving what he was to expect once he got to heaven, but I never tried to make any sort of spiritual connection myself. I’m not worried about this in hindsight because we had so many people outside of our nuclear family who were doing some serious praying for us. We did have the foresight to have him baptized in the hospital, I can’t imagine the guilt I would feel today had Roy not insisted on that one act. It wasn’t until we were sitting in the funeral home the day after Arthur passed talking to the funeral director about what kind of burial service we would like for him that I realized that I didn’t have any faith and needed to find myself some soon.
At Arthur’s Right of Christian Burial, I prayed for the first time in over twenty years. I prayed that Arthur’s soul would be saved and taken to heaven. I prayed that our other kids would find peace and healing. I prayed that Roy would look back on the time with his son as one of the best times of his life. I prayed for other families who were going through the same thing. I prayed for everyone but myself. It semed that a lot of people gave us angels as sympathy gifts, and when we got home, we scattered them around the house. I think it’s the first time I ever looked at an angel and saw the true beauty and inspiration that these little works of art emitted. Having these little symbols of faith propped around the house made me start searching for my soul. I knew in my heart that Arthur was here to give me a message and that message was an order straight from God. I entered this soul-searching phase at about the same time I was getting pretty good at walking and hiking. I would wander around looking at everyday things with fresh wonder and started seeing all life and objects as precious gifts from God, but I was still having a hard time embracing the idea of organized religion.
This past summer, Roy decided to take a leap of faith, himself. He signed up to attend the classes required to convert to Catholicism. I chose to attend with him, still not sure if I was willing to follow all of those terrible rules, but I would go to the classes and learn all I could about the faith I grew up with but didn’t understand. Honestly, I was a bit lackluster about the whole idea, but Roy wanted it and I wanted to support his decision, so I thought I would check it out. After the first few weeks, I was learning about the church and becoming more comfortable with discussing faith with other class members. I was really starting to warm up to the idea of rejoining the church when I was presented with an amazing opportunity. I went to San Diego for a work conference. I had one day to pretty much do nothing but sightsee, so while the rest of the midwesterners were off finding out if tequila really tasted better that close to Mexico, I decided to visit the Mission. I have never felt that kind of holy energy in my life. I was moved to take my shoes off and wander the grounds barefoot, I wanted to be as connected with the earth as I could. I walked around, read all of the little markers that told stories about different priests and events that made the Mission such a holy place. I stood in the garden and wept, not because I was sad, just because I needed to be cleansed. I knelt before the alter and prayed, as I sat quietly in the sanctuary, I felt a surge of energy followed by an indescribable peace. That is the moment I knew, beyond a question, that I wanted to rejoin the church. It no longer seemed like too many rules, I started seeing it as a faith with specific guidelines that I could follow. Instead of repetition, I discovered a comfort in long-standing tradition. Instead of letting my soul wander, I saw a path to guide it along. When I came back home, I had a new-found enthusiasm for the faith I grew up in.
I still have a lot to work on. I have only been back from that life-changing trip for about two months and am still actively learning as much about why we do what I had always taken for granted as a child. I haven’t been to confession in over twenty five years. This is something I’m really dreading, not only will I need to fess up to some ugly skeletons I collected during my invincible years, but I will also need to confess some of the decisions I made on Arthur’s behalf because I know that some of the things we did (and didn’t do) for him were against the teachings of the Catholic Church. I’m still putting off confession because I know that this sort of deep-cleaning of the soul will be very taxing, but I’m no longer afraid that God won’t forgive me, I know He will. Just as Arthur felt when Roy held him, I now feel safe and protected in my (Heavenly) Father’s arms.
Posted: December 9, 2010 by Leslie, Sammy's mom
Day 11: So, ummm…you’re awfully cute when that neuron misfires like that…
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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Something that I didn’t understand when I was first laid eyes on him, and will never be able to explain is how cute Arthur was physically. I know I dwell a lot on Arthur’s appearance, but I just can’t get over how shocked I was at how adorable I found him to be. The physicians and social workers who met with us before his birth really tried to drive home the idea that it didn’t matter what he looked like, we would think he was beautiful because he was ours. Really it was just a nice way to tell us that our son had a face that only a mother could love. From what I have seen, kids with HPE tend to have a certain “look” and there are about 4 “types” of look. Every time I stumble upon one of these kids, I instantly see beauty, so I’m pretty sure it’s not a face that only a mother could love. Total strangers will look at Arthur’s picture on my office desk and go on and on about how cute he was, sometimes not looking away from the picture at all during their time with me. I feel that these children have the gift of cuteness so we, as adults, will not be afraid of them or pity them, but be drawn to them.
Arthur was a very quiet baby. I don’t believe he ever actually cried, he made noises when he was in need, but it was never a full-on cry. After suffering through three months of colic from Marena when she was a newborn, this was really a treat. I knew that people who are dying go through a “conservation mode” physically and nonessential functions start to shut down. With Arthur, he conserved energy by not crying. This energy conservation is also a gift to a parent who is stressed out, undernourished, sleep deprived, depressed. The only thing worse than having a sick baby to take care of is to have a baby who is sick and crying. No matter how bad I was feeling, he would always raise my spirits by his peaceful nature. This is not to say that Arthur was completely mute, however. He babbled a lot. There was this funny little misfire of neurons that went on with him that, on paper, seem like they would be very disturbing, but in reality this behavior was so cute and quirky that it didn’t scare me at all. He would spend most of his waking hours with one arm extended over his head and the hand fisted. He would then simultaneously make a noise that was somewhere between a quack and a cluck and open and close his fist to the rhythm of his voice. When we would put him down for sleep, he would spend hours making that little noise and when I would look over at the bassinet in the dark, I would see the silhouette of his little hand opening and closing. He began to do this less and less as his life grew closer to the end. I will always remember and miss the sound of that little voice quacking away all night long.
I have had some people comment to me about how scary the time Arthur was up all night with seizures must have been for me. Even though a seizure is a scary occurrence, babies look so much different when they have them than adults do. I didn’t even know he was having them regularly until the first nurse from Hospice was at our house doing our intake and he had one right in front of her and she pointed it out to me. For anyone who has never seen a baby have a seizure, it’s usually just a jerky set of movements that are centered around the mid-line of the body. Arthur looked like he was playing air drums when he would have one, he would line up his fists to the center of his body and they would beat up and down somewhat rhythmicly. Then again, another serious health concern that should be terrifying was expressed in such a cute and seemingly harmless way, I was able to keep my head level and calm him down during and after the seizures.
Something about Arthur didn’t seem real to me, with his pear shaped head, all of that fuzzy hair, and his jerky movements, he appeared more as a cartoon character or puppet than a real live baby. I feel that Arthur’s super-human looks and mannerisms were more than just a genetic anomaly, they were a gift. People always try to tell me that God will never give you more than you can handle, but Arthur taught me that this isn’t necessarily true. God gave me way more than I could handle with Arthur, but He also gave me the tools I needed to get through a terrible situation and come out on the other side a stronger person. The most essential tools He handed me were Arthur’s suave good looks and actions.
Posted: December 8, 2010 by Leslie, Sammy's mom
Day 10: Use Your Walking Feet…
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…
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I really never thought much about fitness before Arthur came into my life. I have dieted, worked out to make myself look better, yo-yo’d with my weight, size, and fitness level, but never wanted to get strong, healthy, and balanced until I met him. Actually, it wasn’t until some time passed after I lost him that I decided this is what I wanted to do, and I’m not even sure if this was something I did want for a while.
After I delivered Arthur, it took no time at all for me to return to my pre-pregnancy size, I even dropped about nine pounds below my pre-pregnancy weight by the time I returned to work six weeks after I delivered. I’ve always said that birthing a baby is the best weight loss program I could possibly try, I was about twenty pounds below my pre-pregnancy weight six weeks after I delivered Marena. The difference was, after Arthur was born, I just wasn’t hungry. I would eat some strongly-flavored foods here and there so my breastmilk would have some variety in flavor for Arthur to try, but for the most part, I would only eat if Roy wanted to not eat alone. This was likely my first sign of depression, not only postpartum, but overwhelming dread of taking care of a special needs child. I was afraid that he would die at any moment, but I was also afraid that he may live for a long time with no real quality of life. I knew I was prone to depression, so I had my physician order an antidepressant. Since I am a lactation counselor, I knew the medication was safe to take while I was nursing, I had the resources to back it up, but my physician wasn’t so sure about this and essentially gave me a choice. Of course I chose to nurse my son over medicating my baby blues away. Once Arthur passed, I mourned him deeply. I felt like my sadness was to be expected and ignored some basic signs of what I now look back on as major clinical depression. I was weepy and irritable at inappropriate times. I was always mad at Roy because he wasn’t feeling the same way I was. I was short with the kids, and really just ignored them because I didn’t want them to see what I was becoming. The idea of being institutionalized actually sounded like a comfort to me, I really just wanted to escape reality. I also really didn’t want to be on this earth anymore, the only person I wanted to be with was Arthur. From February until October, I managed to gain about forty pounds, I was heavier than I was the day I delivered Arthur. I refused to seek medical attention, I also refused any sort of chemical to medicate myself. I wanted to feel the open, raw wounds in my soul. I enjoyed the pain and hated everyone and everything that wouldn’t allow me to hurt. What I found out later in grief counseling is that you have to hurt to begin healing, and I had this hurting thing down pat. My job performance was suffering and I was holding onto friendships by a thread. I wanted to just drop dead, and at the rate I was going, I would have probably gotten what I wanted one way or another pretty soon.
I was pretty close to rock bottom when a coworker, Mindi, suggested an absolutely insane idea. She is an avid runner and said there was a half marathon coming up in May and that I should think about training for it. I reminded her that I didn’t run, she countered with the fact that there is also a walking division. It doesn’t matter how I do it, it only matters that I finish. Of course Mindi happened to mention this idea in the presence of Courtney who thought it sounded like a load of fun and that of course I should do it, and of course she wants to do it, and we could both totally do it (sometimes her enthusiasm is hard to say no to). Next thing I know, I’m signing up for the half marathon and the local training group. I received my training packet and decided this was it. If Arthur, a baby who was never supposed to have lived long enough to be born could live for thirteen days, there is no reason that his mother, who was morbidly obese and clinically depressed couldn’t walk for thirteen miles.
The first day of training was terrible. I didn’t realize how out of shape I had become, I was huffing and puffing and hurting, but I walked a whole mile. Roy looked at me when I walked through the door and thought that he wouldn’t blame me if I never went out again, but I did. It was a sixteen week program and I decided that if it was too hard after a month that I would quit. The first month passed and I thought yes, this program is just too hard. But I had no intention of quitting. It hurt to log all of those miles, but I liked that I could pair physical pain with emotional pain, and would always set goals to make myself hurt more on the outside than the inside. I discovered that when it was just my thoughts, the road, and me, I felt a sense of peace and well-being that I’m not sure if I ever have had before. There were days when I would go out and come back frustrated, crying, and in pain, but I never stopped. Looking back, I feel like the tears and pain were just the anger, depression, and hurt flowing out instead of continuing to poison me. I ended up completing the half marathon without setting any land-speed records or hurting myself. The most amazing part of the end of this story is that it wasn’t the end of the story at all. I continued to walk for long distances even after the race was over. I live 2.5 miles from my office and I try to commute by foot most days, logging about 25 miles a week in commuting time plus I like to go for longer treks on the weekends. I have now completed a total of three half marathons and my times keep improving. I have also, just recently, taken up jogging and would like to run at least a good portion of my next half marathon. The best part of this story is that I am enjoying an internal peace and tranquility now that I have never known. I feel that that big open wound in my spirit that I liked to leave exposed and show off to whoever would look is now closed. Yes, there is an ugly scar there, but scars tell a story just like I am telling Arthur’s story.
During the innocent time that I thought I was pregnant with a healthy baby, Roy and I would imagine what Arthur would be like, and I would say that I just knew that he would always be in trouble at daycare for using his running feet instead of his walking feet. We were crushed when Arthur’s prognosis was to never be able to run, let alone walk. Since Arthur never got the opportunity for his feet to walk or run, I will do it in his honor every chance I get.
Posted: December 7, 2010 by
Day 9: The now infamous curly fry incident…
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock.
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What in the world would possess the father of a one week old terminally ill baby with a bilateral cleft and severe feeding problems to place a curly fry in said child’s fist? I can only come up with one possible explanation…he wanted to live in the moment because it may never happen again.
Here’s the setup: Marena needed some dressy clothes to wear to a band concert, have our family pictures taken in, and it was understood although never said out loud that she would need something appropriate to wear to a funeral. On Roy’s day off, Marena and I decided to take off, just the two of us, and shop for some clothes. Roy and Arthur were left home alone to fend for themselves. I figured everything would be fine, we wouldn’t be gone for that long and there was plenty of breast milk in the fridge. It would give the boys some man time together as well as let me focus some one on one time on my daughter who had been an only child for the past 12 years. We probably did take longer than we thought, after we found some clothes, we also decided to grab a few groceries. Roy called while we were in line at the grocery store and asked if I could just pick up some fast food on the way home because he didn’t want to take any alone time away from Arthur to cook anything. The closest and most convenient drive through was Arby’s, I picked up some sandwiches and curly fries for us all. When I got home, I sent Marena to her room to put her new clothes on hangers and I handed the Arby’s bag to Roy to set the food out on the dining table. Meanwhile, I was putting away groceries. When I finally walked around the corner into the dining room, I saw Roy eating a curly fry and Arthur was in his other arm squeezing a curly fry of his own in his tiny little fist. When Arthur spotted me, he raised his fry in the air and started swinging it like a cowboy getting ready to rope a calf. I was absolutely horrified. I snatched the limp fry out of Arthur’s fist and pried his little fingers apart to remove the rest of the greasy potato from his hand. I started to admonish Roy for his lapse in judgment when it hit me that he actually showed very wise judgment. Roy gave Arthur a curly fry to swing around that night because he didn’t know if he would ever have Arthur and a curly fry in the same room ever again. Now that I think about it, Roy’s argument that Arthur would have never been able to get the fry into his mouth was valid. Arthur’s motor skills were rapidly declining and he absolutely would not have had the coordination to stuff that fry in his face. Roy just wanted Arthur to experience everything that the rest of us were experiencing.
It was really a luxury to have an infant who we knew we had limited time with. Arthur got to go everywhere, not sure if during the cold, flu, and RSV season we would have taken him out and about so much had we not set out to fill his short life with high quality experiences. Arthur got to go to two of his sisters’ musical performances in crowded school auditoriums. He got to Christmas shop at the mall. He got to go to some of our favorite restaurants and experience the strong flavors that made it to my breastmilk. He was held and touched by family, friends, and strangers. He got to snuggle with the kitties and went outside once to touch the dog (neither of them seemed too impressed, so we didn’t try that one again). Most importantly, Arthur got to hold a curly fry. Four hours after I successfully removed the curly fry from his clutches, Arthur had a seizure, then another, then another. Arthur’s seizures became stronger and progressively worse throughout the night, he hadn’t been on any seizure medication until that point. By the time his hospice nurse arrived at the house with his prescription, I had been up with him all night and he was purple. I was sure I was losing him, but after his first dose of phenylbarb, the seizures ceased. The evening that Arthur grasped his first curly fry preceded the night that Arthur’s seizures reduced his motor skills significantly. That curly fry was the last thing I ever had to pry out of his hand, because by the following morning, he had lost his ability to grasp things.