There is absolutely nothing in this world that can make this tradgedy right, but I take some comfort in the knowledge that through this one wondrous little boy there are people out there that are now aware of the importance of organ donation, that have gone out and signed their cards. And maybe even somebody somewhere that has benefited from a organ donated through the awareness that Hunter and his struggle brought to the world.
I know Kelly and Kevin, Hunters equally amazing parents, are so proud of their little boy and his accomplishments. In a little over two years on this earth this little boy did more to make this world a better place than most people do in a lifetime. Thousands of people, in thousands of places, stopped and looked at that precious smile on a computer screen, and they were changed. Maybe not even consciously, but they were. There were tears shed, and there were priorities put into place when they realized what the truly important things in life are. And for a few when the time comes to make the decision to donate their loved ones organs or not, somewhere in the back of their minds they will see a laughing little boy named Hunter and make the right decision. To give the gift of life, and know that they have not only given someone else the chance of life, but they have helped fulfill a magical little boy's purpose.
The prayers that were generously offered to Hunter now belong to those he left behind. The ones that are missing the sweet hugs and tender kisses. The joyful laughter and the sweet smell of a little head nestled against a shoulder. "Hunters prayer" now becomes "Hunters Hope". PLEASE help keep this hope alive, sign your organ donor cards, and make sure your loved ones know of your wishes.
The following is the eulogy that was given at Hunters memorial service. It was read and written by a very special woman, mother and friend named Betsy. Please read it with your heart open, let the tears come and hear the "roar" of Hunter. It is his legacy......
Mighty Hunter had lots of extras-some of those extras came with words bigger than Hunter himself-HLHS, EFE, FTT, words many of us came to be way too familiar with.
Some people will think that Hunter was very sick and frail for the majority of his life. But that is not true. Despite Hunter's medical conditions, Kevin and Kelly gave Hunter a very wonderful gift. They let him be a little boy first. Never did they let go of that wish for him. He was in most aspects, just a regular kid. He loved the Teletubbies and Grover, and matchbox cars and body slamming his dog Scooter. This summer, he learned to count to 20. He loved to talk on his telephone. I think that was genetic, don't you Mom?
Hunter knew the true meaning of "Breakfast of Champions"---he would open his eyes in the morning, and his first words would be his breakfast order to Kelly. Hunter's early morning favorites were ravioli, hot dogs, tuna with Texas Pete, salsa with chips, and veggie munchies. And he'd chant, 'cook, munchies, cook' as Kelly prepared it for him.
And when his day was done, he loved to be rocked to sleep in his Mommy and Daddy's arms, knowing he was safe and loved in their care.
When my daughter Paige was born just hours before Hunter, I knew I was witness to something profound. I knew that from then on, my life would be about making a difference in the life of Special Needs kids like Paige and Hunter.
But the difference I will make is dwarfed by the difference Hunter made.
Last year, when Hunter was very ill, friends of Kelly put a prayer page up for Hunter on the internet. Within days, there were dozens and dozens of well wishes for him. Whenever he fell sick, prayer circles would be started, and hundreds of people all over the world would be praying for Hunter at the same time.
Through Hunter, Kelly became very vocal about the importance of organ donation. People wrote to Kelly and told her that because of Hunter, and reading his story, they had signed their organ donor cards. So, perhaps today, or next week, or 10 years from now, someone will receive an organ that saves his life because Hunter reminded us how important it is to make a difference.
In honor of Hunter, to carry on his legacy forever, Kevin and Kelly would like to ask each of you to become an organ and tissue donor. Sign your card and discuss it with your families. Tell them about Hunter, how important he is, and what a difference he made. Hunter was our miracle baby from the beginning, the one who made us believe all things are possible. That has not changed. He made our hearts soar, made us rejoice time and time again, and he will continue to do that for us.
Hunter changed our world forever. All of us grieve losing Hunter. We'll miss his sweet little voice, we'll miss the little boy who looks so very much like his Daddy. We'll cry and feel sad and ache for him.
Kevin and Kelly, you know that the path that lies before you is the most difficult one that you will ever follow.
But what will guide you on that path is that Hunter is still there with you. It doesn't seem possible today, but your grief will be replaced by the joy of Hunter. Feel him, inside of each of you, right here, feel him when you reach for one another's hand in the darkness.
With all my heart, with everything that I am-Hunter will still be a part of my family. He'll still be Paige's twin brother---her soulmate the way that you are mine, Kel. I'll tell people about him all the time, and remember him with a heart full of love. I'll keep a special spot in my prayers, and dreams, and life, just for him. And I know that all of you will do that for Hunter too.
There are some things I don't have answers for. I don't understand why Hunter had to die. My search to find meaning in that has proven futile. No one should ever have to lose a child.
But there some things I do know.
I know that Hunter would want you all to love and support one another. I know that he wants his Mommy and Daddy to reach for each other whenever they are frightened or sad. I know that he wants you to laugh again.
Please make a difference---for Kevin, and for Kelly, for all of us who love Hunter, and most of all, for Hunter. Live your lives with the joy and jubliance of a two year old boy. Find a miracle in a simple thing. Stop and look at the beauty of the world-for it truly is a beautiful world.
My Mighty Hunter---your body was tired and sick, and it needed to rest. But we still need you. You still have work to do for us all.
Be our light, sweet baby, when the darkness is too strong. Remind us that you are still with us in the whisper of a breeze. Dance with the angels and once in a while, stop and sprinkle stardust in our eyes.
On Hunter's pray page, the song that is playing in the background is "The Rainbow Connection" I'd like to share some of the words to that song with you.
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Who said that every wish would be heard and answered
When wished on the morning star? Somebody thought of that, and someone believed it, And look what it's done so far. What's so amazing that keeps us stargazing And what do we think we might see? Someday we'll find it, the rainbow connection, The lovers, the dreamers, and me. |
I still believe, my sweet Hunter.I still believe.
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He's fighting with all his might, but its more than most can stand.
His little heart is hurting Lord, as are his parents too.
Please keep them in your strong embrace, and help them see the truth.
That once again the hurt will dim, and hope into hearts pour, With all my love, Shari and family |
If you'd like to leave a word of support in the guestbook I'll make sure they get it.
Thanks to all,
Shari
What's going on with Hunter.... he's on the waiting list for a heart as a status two. His surgeon is calling several other heart centers in the country to get other opinions on doing the peel (removing the endocardial fibroelastosis) and he plans on presenting Hunter at cath conference next monday to try to drum up support for doing the peel. We'll see. We would love to do most anything before we resort to transplant.... they are very good at doing the transplant itself, but long term survival rates aren't very good. I pray that they make the right decision.
Hunter is currently feeling 'ok'. As you all know his GI tract is in very poor condition because of his poor cardiac status. He has a G-J Tube but still refluxes and vomits stomach contents (meds that must be given to the G as well as bile and such)severely....especially at night. He usually wakes up at least 3 or 4 times screaming. We are having a tough time with the continuous feeds also. We aren't able to go up to 30cal formula because his gut simply can't handle it (causes frequent loose stool) but he's having a tough time handling the volume required of 27cal formula. We are still working on this. It's also much more obvious now that he's home that he's sick. At the hospital, he had only a small PT mat (thank God Kev is a PT..it was wonderful to have the mat for Hunter to play on...no 2 year old should be in a bed 24/7) to crawl around on....now he has the entire floor. He crawls a bit then lays down to rest...it's quite difficult to see. He's unable to walk, and for the last few days isn't even able to bear weight. This too is difficult, as Hunter was walking forwards and backwards and climbing like a monkey before we entered the hospital back on November 2. Though his physical health is very marginal, his personality is back full swing:-) I'm in awe of my child....all he's been through and he's still my wonderful little pooh bear. He smiles, laughs, dances (bobs his head back and forth!), and TALKS! His vocab now consists of ma-ma, da-da, bubble, and vwa-vwa (water). I'm so in love with him. Will you guys please continue to pray for him. I'm terrified of loosing him.....I can't imagine breathing without my Hunter here. That night that he was taken back to the unit for the third time, I thought he was dying...we all did. It was the most horrific feeling. Sheer terror. I remember feeling as though I was going to come unglued...start screaming and throwing things. I don't ever want to feel that way again. I would do just about anything for a miracle at this point....if the cardiac pressures would just come down on thier own and we could just forget the whole mess...get own with our lives without anymore surgery.
Thanks again for everything you guys. We love you guys. Thank you all so much for
loving us.
(((BIG HUGS)))
Kelly, Kevin, and Hunter
