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This update is actually one day early and it is written in three parts. The first part is my update. The second part is Janelle’s update and the third part is a letter from Alexa. Alexa makes us all so proud. I wish I could have her relationship with God. She continues to amaze Janelle and I. I hope you all enjoy and celebrate Daegen today. One year ago we had to tell everyone that Daegen passed away. Please read on.
July 17, 2006
It has been one year son since you were born into eternal life. Many things have crossed your mom’s and my mind. Did we ever ask you what you wanted to do when the Leukemia came back? Did you want to try another round with chemotherapy? Did you want to try and get in remission for one more transplant? Did you want to do nothing and let God take control and bring you eternal life? You were so young we felt you couldn’t fully understand the entire process. How does a dad ask his son if he is ready to die? How does a mom ‘Just let go’ when she has been taught to ‘Just hold on’? It isn’t easy Daegen. No parent should have to face the choices we had to face. No parent should have to choose to ‘Just let their son die’. Just like you didn’t ask for cancer, mom and dad did not ask for choices like we had.
You were so brave showing us your courage from August 7, 2003 until you went with God on July 17, 2005. You taught so many people what Love is. You taught us to be brave, to face life head on and live life to its fullest. You loved your big sister Alexa and gave her strength and faith. She is so proud of you and talks about you daily. Your fire and spirit continue to shine through Alexa. I think one thing that has been lost in this battle is your feelings. I was always able to convey your mom or my feelings to everyone. I am not sure I did that for you. The hurt, the pain, the joy, love and hope. I’m not sure if I ever understood completely your feelings. The pain of all the pokes. The ugliness of cancer, chemotherapy and other medicines. That feeling you had when you were getting nausea even though you didn’t know what that meant or why it was happening to you. The joy of Thomas the train, the fear of the unknown, the happiness of the snack packs at St. Jude or Journey to Ernie with Ellen at KU. The daily ritual of checking for packages at Target House. Playing with Zach. Getting to know Mr. G, Ellen, Jami, Karen, Mrs. Cherry, My, Jennifer, Dr. Deb, Dr. Yusuf and all the other people you got to meet. To this day I still do not fully understand the scope of your impact on others, friends, family and complete strangers. The lessons you taught total strangers, the tears of sadness from the people who love you the day you died. I am so jealous of you for several reasons. Your life is so pure. No sins, no hatred, no anger only happiness and love. You are with God. You have eternal life, peace, love, hope and faith. I can’t wait for the day when I get to be with you again. I am not in any hurry to get there, I just can’t wait. I appreciate all the signs you show me each and every day. The wind chimes blowing and making noises even when there is no wind to blow them. The amazing butterflies that seem to come out of nowhere. The awesome rainbows that I have seen lately. The clouds you have turned into shapes. The birds flying freely. I am jealous of your ability to love all things without prejudice. To see the beauty in simple things like flowers, particularly tulips, your moms hair, the great day outside, a little blue tank engine named Thomas. We are so proud of what you have accomplished, the lives you have not only touched but changed for the better. The lessons you have taught all of us. If I can someday be a fraction of what you are as a human being, then I will have had a wonderful life. Son, may your wings take you home. You are now free as a bird son, free as a bird. No more cancer. No more pokes. No more IV’s, no more medicines. No more getting sick. No more pain. I remember the saying we used to say to each other all the time. I would say to you, “I love you” and you would reply, “I love you”. I would then say “you’re going to get better you know that” and you would say “Otay”. I was right son. One year ago, July 17, 2005 “You got better.” Not the way we all had hoped for but in the most amazing way of all. God brought you home. God Bless you Daegen James Feyh. You were truly my best friend and hero. DMAN Hero. Mom, Dad and Alexa love you so much. Love, Dad
July 17, 2006
Oh, my precious boy, it has been a year since you left this earth and I can’t even begin to tell you how much I miss you. This past week I have recalled every moment leading up to your passing and with those memories come so much pain. But, they also brought so much joy because with every memory, I saw your sweet face and you’re oh so soft hands, your long fingers, and you’re curly angelic hair, your irresistible smile and your beautiful wise eyes. I have reflected so much on the past 3 years from the moment of your diagnosis to the very end and beyond. To think, that a 2 ½ year old boy had to endure endless needle pokes, several blood and platelet transfusions (sometimes 2 and three a day, because the doctor’s said your body was just eating them up), several rounds of immunoglobin and gammuglobin, harsh, harsh chemotherapy, endless amounts of daily medications, several surgeries, two bone marrow transplants, continuous cleaning of your Hickman lines, wearing masks that you didn’t like (but you never complained or asked not to wear them because you somehow knew that was what was best for you), and the enormous amounts of days in the hospital, being transferred to a hospital 1000 miles away from your home, and all the other medical things you endured is almost unbearable for a parent to think about when it comes to their child. How in the world do you do that with so much grace and so much willpower? The entire time of your battle you did nothing but bring joy and happiness to all those around you. You were a “light” that shined so brightly and when I think about it I can see why God would want to bring you home to start your new life. You were not meant to be cured here on Earth, but you were meant to be free in your new life. As most of you can imagine, life without your child is never the same, there will never be four of us sitting down to dinner, or four of us playing at the park, or four of us going on a trip, or four of us flying a kite at least not physically four of us. Through my pain, my anger, my sadness, my grief, I want nothing more than to be better than I was before Daegen got sick and passed away, I do not want what happened to not leave a mark on me in a positive way. It is very difficult being here without him, but I have to remember that Daegen’s legacy can only go on through us, and we and we alone have the power to be better people because of this. Our responsibility is to make a mark on this world just like Daegen did and whether or not that mark is small or large does not matter, what matters is that we left it. I know that Daegen is with us everyday and I know that he is experiencing all the joy and happiness with God. I have to remind myself that Daegen is not missing out on things; we are the ones that are missing out. It’s kind of like that song, “God only cries for the Living, because the Living are left to carry on.” This year Celebration will be difficult, it will bring many tears but it will also bring many wonderful memories of Daegen’s life and our families and our friends who gather with us today to share in a very special Memorial Mass our witnesses to the life that Daegen lived. Our journey on this earth whether long or very short like Daegen’s can either be full of love and joy or it can be filled with hate and sadness. The choice is up to us. I hope that we continue to become better people and that we take the lessons Daegen has taught us and use them in our daily life. I feel so blessed that God gave us Daegen for four wonderful years and although I would never want my child to have cancer and be sick, in fact if it meant that Daegen could be here, I would gladly live the way we were forced to live and I would live it for everyday the rest of my life. But, the only way for Daegen to be cured was to begin his new Life, and so I have to trust God, I have to believe that one day I will understand “why?” I will leave you with one final thought: Life through all its ups and downs, its joys and its sorrows is our one chance to prepare for our New Life. My sweet, sweet boy, I love you more and more everyday and I carry your heart in my heart. Love, Janelle ( Mommy)
July 17, 2006 I am really sad that my brother died, but I know it is for a good reason. I may not know what that reason is, but I know there is one. I hope that you all will let God come into your heart. If any of you have lost somebody in your life that you love, you probably know how we feel. I miss my brother so much some times it doesn’t show but I feel it in my heart. Since my brother died, I know somebody is always watching me with God. I also know that since my brother died that all special things can happen so I look forward to that. Love, Alexa
God Bless all of you. Lance, Janelle, Alexa and Angel Daegen
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