Matthew Austin Akin 10/27/04 – 5/1/10

Speech Given by Kristin (Matthew’s Mom) at Matthew’s Service

Good morning. I will say it again even though I feel my words are inadequate-thank you all so very much for being here today. If you would, sit back, close your eyes and calm your mind. I would like you to think about your favorite gift. It can be from recent or many years ago. Can you picture it? Do you see it clearly in your mind? Is it making you smile? Bringing joy and happiness to your heart? Or perhaps it’s simply something you wanted for a very long time? OK, you can open your eyes now because it it’s now my turn to share with you my one of my two favorite gifts of all time-Matthew Austin Akin. Hebrew in origin, Matthew means God’s gift and what a gift he was.

My pregnancy with Matthew was tough. Many of you may remember, I got very sick during my second trimester and was hospitalized. The first few days passed and the doctors could not figure out what was wrong with me-everything from Lyme disease to Cancer was mentioned. It was at that time, in the hospital, that I vividly remember realizing that my heart was now attached to something much bigger than anything I had ever known. I was in love with this baby that lived and took shelter in my tummy. I was officially a mommy-and that was something no one could ever take away from me. And it was in that moment that my first mommy instinct kicked in-wanting to protect my baby above all else-even if that meant sacrificing myself. This little life depended on me, he needed me for shelter, for food, for love and I was not going to turn my back on him-regardless of the fact that he was still inside me. Thankfully I got better and other than special weekly tests, there was no major medical intervention needed for Matthew. Finally after 41 ½ weeks Matthew Austin Akin was born on October 27, 2004. He weighed 7lbs-9ozs and was 21 ¼ inches long. He was perfect-my first of two gifts sent straight to me- directly from God.

It would be my honor to share with you just a few of my favorite gifts that Matthew gave me. One of my favorite’s: school time. I remember dropping Matthew off at Mom’s Day Out for the first time-he was just two years old. Unlike the other kids, I could hardly get my hugs and goodbyes in before he was off to see what there was to play with. I stood there kinda sad that he didn’t seem to need or miss me more but realized that was the gift he was displaying and I should be thankful. Matthew continued to love school, his teachers, his classmates-everything about it. While I did not have the opportunity to take him as often as Justin, the days I was home from the hospital with Andrew were among my favorites. We would pull through the carpool line and he would get ready to get out, I would say “I love you Matthew Man, have a great day and be your best” and he would smile and say “I love you too, bye mommy”. As any parent knows-seeing your child happy makes you happy. The only thing better than dropping off a happy little boy was picking him up. I would be waiting in the car pool line and once I saw him, a huge smile would cross my face. Because once he saw me, I could read the words come out of his mouth as he would get so excited and say–“that’s my mom” and he would wave and point, I couldn’t wait for him to jump in and tell me all about his day. The activities, the projects, the fun-every day was an adventure for Matthew.

Another one of my favorite gifts was Matthew’s ability to snuggle. At twenty months Matthew left the crib and went to his new big-boy bed-a full size bed. Like everything he did in life-he made a smooth and uneventful transition. We would do our nightly routine, which ended on prayers and a reading a book. So many times after we would finish our book he would ask me to stay with him and snuggle-not because he needed me to go to sleep but because he wanted me there with him. Falling sleep in his bed with my head on his pillow and his loveys right between us was like falling into a dream. Of course there were countless nights that I was away from Matthew as I was living in the hospital with Andrew but I always knew that my homecoming would be just that much sweeter. And while I was away he always slept in our bed, in my spot,-waiting for me to come home. Even in the final months of Matthew’s life as he battled GVHD-he still insisted that I sleep with him in the hospital bed. I tried to explain to him that he would be too crowded with me in there but he insisted-saying that he didn’t care-he still wanted me in bed with him. So, in our sleeping bags, side-by-side we slept every night until the end.

I could go on and on about all my favorite gifts that Matthew gave me but it would take days. However, I would like to share one more gift and this is one is among my favorites-the gift of making happiness wherever he was. Matthew was a social child and loved being around people. You might remember, last spring he and I went to Ft. Lauderdale to have a special mommy and Matthew trip before his BMT started. Within minutes of arriving at the beach each day-he immediately started to make friends with the other kids. It didn’t matter what they were doing, or if they were playing with others, we would just join in and make happiness. He didn’t need his best friend or favorite toy-he just made do with what was there and was equally happy. On the off times when Andrew was home with us, we would usually have to start our day very early due to his pumps and medicine schedule. So, one of us would often times run to Starbucks and Matthew would always come along. As we pulled out of the driveway and drove up the street Matthew was always looking around and would ask me “where is everyone?” and I would again remind him that it was early-everyone else was still in bed. Yet, he was anxious and ready to start his day with friends and play. One of my favorite memories was Matthew coming to visit Andrew at St. Louis Children’s Hospital. He would come in the room and give his brother a big hug and kiss, never afraid of what Andrew had going on-actually quite the contrary. Matthew loved to use the privacy curtain in the room as his curtain for his stage. We would gather a few nurses and he would pull the curtain back, step forward and begin to sing one of his many favorites. At the end he would bow and say “thank you” in the sweet little voice.

Matthew was a gift not only to me but to all who knew him. He lived his short life full of adventure, happiness and love. On our last trip to Cincinnati to meet with Dr. Filipovich we decided we wanted to donate many of Matthew’s toys, games and even his bike to the Physical and Occupational Therapy Department at the hospital. Many people asked me, “isn’t that so hard, to give his things away?” The answer was not really-because they were just things. For example, the happiness and joy didn’t come from his bike-it came from Matthew pedaling as fast as possible, zooming down the street with the bike teetering back and forth due to his training wheels all the while looking back at us. Without Matthew-it was just another red bike.

So now what? You may only see the broken hearted woman who has lost both of her children to an awful and rare disease. But I hope you can see past that and really see a strong and faith filled woman who has been blessed with the best two gifts in the entire world. While I will live the rest of my days wishing Matthew and Andrew were still here with me, I will also live knowing that their short lives were not in vain and that I have a lot of work to be done in their honor and on their behalf. Living in the hospital the last 33 months, caring for my sick children and standing by as they passed from this life into the next was the most difficult thing I will ever do. So at this point-it’s all downhill. I can and will do anything I set my mind to in their memory to make them proud of me. They gave me the ultimate gift-part of themselves, memories to fill my heart and mind with joy and nothing can or will ever take that away. I will use that as my fuel to go forward and do good in their name. Now I urge you to go forward and give those same gifts of yourself to those who care and love you. I promise those are the things that they really want anyway. Kahlil Gibran said, “You give but little when you give of your possessions. It is when you give of yourself that you truly give.

Thank you.

Speech Given by Justin (Matthew’s Dad) at Matthew’s Service

Thank you so much for coming. It means a lot to us that you’re here. Can you believe I was up here just five short months ago? After Andrew’s service many people asked me how was I able to stand up here and speak. My response was, “It was easy. Once I got up here, I realized I had a captive audience and I got to speak about my favorite topic in the whole wide world – my son.” Well, once again I’m up here and I get to talk about my favorite topic, my son Matthew Austin Akin.

But before I start, I want to thank my father-in-law whom I work for. For thirty-three months as my sons were going through four bone marrow transplants I was with them. I had the flexibility in my job to come and go as I pleased with no questions asked. That allowed me to be there for my sons and for my wife. In Cincinnati, I was one of the few men on the transplant floor. The rest of them were all back home at work. Without that opportunity, I wouldn’t have known Andrew nearly as well as I did and wouldn’t have gotten to spend such amazing quality time with Matthew. Vince, thank you from the bottom of my heart. So what can I tell you about Matthew? Well, I can tell you that he changed my life forever. You might think you know happiness before you have children but once the first child comes you realize just how wrong you were. When Matthew was born on October 27, 2004 my heart was filled with a love that I had never felt before. This little boy whom Kristin and I had brought into this world was simply amazing! As Matthew started to grow so did the love in my heart. From the toddler that he once was to the little man he turned into, I always wanted to show him off to everyone. I was so proud of this little boy who was so polite, fearless, easy going and full of life.

If I had to use one word to describe Andrew it would be happy but for Matthew the word is FUN! He was fun to be around and all about having fun. And boy did he fit a lot of fun into his short five and a half years of life! At an early age it was obvious that Matthew only had one speed and that was FAST! Real fast! He ran everywhere! Life was an adventure and there wasn’t anything that was going to slow him down. There simply weren’t enough hours in the day to fit in all the fun. He was up for everything – swimming, skiing, horseback riding, fishing, camping, flying, going on train rides, etc…. I could go on and on and he did all of this at the ages of 2, 3 and 4. From the day he started walking there wasn’t anything he wouldn’t try. Now let me tell you some of my favorite stories about Matthew that I think show who he was to the core.

I used to love to take Matthew down to my home state of Texas. His middle name is Austin for a reason. One of my favorite places to take him was a resort in the Hill Country called the Hyatt Lost Pines. The resort has a lot to offer and Matthew wanted to do it all. Many mornings were the first people down at the pool and we stayed there all day. My favorite part was the big water slide. The first time we went Matthew was only three and when the lifeguard measured his height he was too short to go down the slide. That made for a very unhappy three year old. First of all, I couldn’t believe he was even willing to go down the long winding slide by himself at that age. But a short time later Matthew saw a different life guard at the slide so he climbed the stairs again to give it another try. This lifeguard didn’t measure him so off he went and I was waiting at the bottom of the slide to catch him. I remember seeing the expression of pure joy on his face and it was so fulfilling. As I caught him I realized that his life was in my hands. He couldn’t swim and without me he would drown and I absolutely loved having that responsibility. Matthew would go down that slide at least 50 times a day and we both loved every second of it.

Matthew lived life without fear and on the edge. We live on a hill and as the neighbors here can attest, Matthew, with his favorite rain boots on would ride his bike as fast as he could down the street the bike just wobbling side to side from training wheel to training wheel. He was always on the verge of a wipeout. Oh how it used to just terrify me! I always envisioned him going straight into a light pole or a fire hydrant. But riding a bike slow isn’t a lot of fun. It is only when you go as fast as you can and have some close calls that you truly get the most out of the experience. Another thing Matthew loved to do was to pile every pillow in the house at the bottom of the staircase and build what he called a dam. He would then go up to the fifth stair and jump down into the dam. Just flying through the air as I stood by and watched hoping he would land on a pillow. Matthew absolutely loved Six Flags and last summer at the age of four for some reason I took him on a roller coaster there called the Screamin Eagle. When the park opened up that morning we ran straight to the coaster. Matthew was tall for his age but he still fell a little short of the height requirement. But no one was looking so we decided to forge ahead anyway because he said he wanted to go on the ride. Well, we sat in the very front car and took the first run of the day. Yes, halfway up the first climb he looked over at me with the biggest blue eyes you’ve ever seen and started screaming but he was OK. I know a lot of adults who won’t go on that roller coaster but at the age of four Matthew was ready to take it on. That was just who he was – willing to do whatever whenever.

Another example of this was when Matthew had to go through pre-transplant tests in Cincinnati and Kristin and I took turns taking him to the hospital every day for his tests. One day in particular I’ll never forget because he showed me once again that he was always able to adapt to whatever life threw his way and take it all on with a sense of humor. Matthew and I were at the hospital early so he could drink some contrast and have some blood draws spread out over a couple of hours. We then got to leave the hospital for a little while but then had to go back for some more blood draws. So we went to breakfast at his favorite spot for blueberry pancakes but then headed back. As we were driving I was just waiting for Matthew to recognize where we were going. Thankfully, he was enthralled with his Scooby Doo movie playing on the DVD player in the back seat and he wasn’t paying attention. But as I pulled into the parking garage of the hospital he took his headphones off and with a smile on his face said “Dad, if you take me back into that hospital. I’m going to have to spank your bottom”! He then put his headphones back on and kept watching Scooby. No questions about what was happening next. No crying. No screaming. Just a quick funny statement. Matthew was four at the time and I remember thinking – “Wow, he is amazing and I’m so proud to be his Dad”.

Yes, I’ve lost both of my children but don’t be sad for me. I’m the lucky one. Tomorrow is Father’s Day and I’m the father of two of the most amazing children ever. They just happen to be playing together up in heaven these days one laughing nonstop and the other having as much fun and going as fast as the good lord will allow. Now, I have to move forward with my life. I have to help families who will be dealing with Histiocytosis in the future. Kristin and I are working on setting up our non-profit organization right now and we have a lot of lofty goals. Matthew and Andrew’s time on this earth was short but I feel them with me every single day. The things that have happened to us since they’ve passed have been truly amazing. And when that day comes when I get to see them again I want them to be able to say “good job Daddy”. My hope is that each of you has learned something from this crazy journey we’ve been on. Look at the person on your left, look at the person on your right. Everyone in here has problems. Some are worse than others but we all have them. We lived in and out of three different hospitals over 33 months and I can tell you that there are a lot of sick children in those hospitals begging for the chance that you have right now! Matthew Austin Akin lived each day like there was no tomorrow and just adapted to everything this world threw at him. And for that, I’m so so proud of him.

Ferris Bueller once said, “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it”. Matthew Austin Akin didn’t miss any of his life and for my remaining time on this earth I don’t plan on missing any of mine.