Below are what Mary, Mark and I shared about Jack at his Celebration of Life.
I tried to write an inspired, eloquent speech explaining the person you are and how much you mean to me. But the truth is, there are no words. Only you will ever understand our bond. So I don’t want to talk ABOUT you, I want to talk TO you. Therefore, I wrote this letter instead.
From the moment I knew you were in Mom’s tummy, I was in love. It wasn’t until we actually met that you stole my heart. You were so tiny, and to be honest Jacky, you were a little scary looking with all those tubes. But they put you in my 5-year old arms and I’ve been hooked ever since.
Over the next 15 years you continued to inspire and teach me. I’ve learned to accept the things I cannot change. I’ve learned the difference a single smile can make. I’ve seen how patient our father is. I’ve witnessed how strong our mother is. You opened my eyes to a world I would not otherwise understand, and for that, I thank you.
It has been such a privilege to be your sister, to have gotten to come home to those twinkling eyes and that beautiful smile every day. Words cannot explain how much I miss you. I hate that we will never be able to take another “selfie” on my phone, that we didn’t get to finish reading Percy Jackson, and that I can’t dance around, singing at the top of my lungs just to hear you laugh. It breaks my heart that you’re not here, but I can’t help but smile knowing that you are pain free and happy up in heaven.
Enjoy those angel wings, little brother, you deserve them.
There is so much I could say, but I’m going to keep it short and sweet.
I want to finish with a quote from “Wonder” by RJ Palacio. It says:
“The things we do outlast our mortality. The things we do are like monuments that people build to honor heroes after they’ve died. They’re like the pyramids the Egyptians built to honor the pharaohs. Only instead of being made of stone, they’re made out of the memories people have of you.”
I can tell you Jack, that everyone here has the best memories of you. Your monument will be in all our hearts forever.
You are my sunshine sweet boy. I love you to the moon and back.
Until we meet again.
DAD'S (MARK'S) REFLECTIONS
For those of you who don’t know me, I’m Ann’s husband and Jack’s dad. I’m not on Facebook, but I can assure you that I do exist.
Let me begin by saying thank you so much for your thoughts, your prayers, your words of encouragement, and your support. I can’t tell you how much your outpouring of love means to us.
In first John, chapter four, verse 12 it says:
No one has ever seen God; but if we love one another, God lives in us and His love is made complete in us.
We’re here today to celebrate Jack’s life. It’s very difficult for me, but as Ann likes to remind me these days… we can do hard things. We can do hard things.
Speaking of Ann… don’t tell her I said this, but Ann is a truly remarkable person. She has tremendous stamina, she’s determined, she’s incredibly focused, she learns quickly, she’s very decisive, she finds a way around barriers, and she won’t wait for anybody. She is driven to get things done no matter what and she is uncompromising in her passion for doing what’s best for her Jack. She is by far the best possible mom Jack could have asked for. Ann, I thank God that you were chosen to be Jack’s mother and that you loved and cared for Jack like no one else on earth.
I’d also like to say, that along with Jack, we have the best kids in the world. The past 15 years were not easy for them and yet they each understood the challenges we faced and they never once complained about Jack or about the extra care and attention he required. Hilary, Mary, and Eric, thank you for your love and understanding all these years. We simply would not have made it without you. I’m so proud to be your father and I love you with all my heart. You are the joy of my life.
When Jack was a few months old and after we had spent so many weeks in the PICU at St. Louis Children’s Hospital, I remember exactly where I was when it finally hit me that Jack had a very serious disease that would dictate the course of his life. I was devastated. Who could have known then that CMD would dramatically change our lives. More importantly, who knew Jack himself would dramatically change our lives—not so much because of his disease but in spite of it. Over the course of his amazing life, Jack shattered every belief I had about life and about what makes life meaningful.
For one thing, Jack lived in the present every single day of his life. Jack made you feel like you were the only person in the world. When he wasn’t hurting, Jack lived every moment in anticipation that something good was about to happen. Jack had a wonderful sense of humor—he always laughed at my jokes no matter how bad they were and as Angie mentioned, he absolutely loved it when someone else got hurt.
There was something special about Jack that couldn’t be explained by nature or by science or by medicine. It was his spirit which transcended everything. Galatians chapter 5, verse 22 says:
The fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness, and self-control. Against such things there is no law.
I can’t think of a better way to describe Jack. Jack lived by the Spirit and kept in step with the Spirit his entire life. The laws of nature may have dictated what Jack’s condition would be, but they could never dictate who he was or how he would speak to people, move their hearts, or lift their spirits in such a profound way. Jack taught me that.
Jack, you changed our lives forever and we will never be the same without you. We needed you as much as you needed us. We saved you and you saved us right back. We miss you terribly, but this is not the end. Your journey continues and your legacy lives on and every time I look to heaven I will see your smiling eyes in the twinkling stars above. My heart is breaking, but my soul is soaring with the knowledge that your work on earth is finished and you are finally home.
Thank you, God, for sending us such a perfect gift in Jack.
MOM'S (ANN'S) REFLECTIONS
The first thing that comes to my mind as I stand here in front of all of you is, Why did I agree to do this? I’m a writer. I don’t stand up in front of large groups of people and talk.
This is totally a Jack thing. From day one – Jack has pushed me out of my comfort zone.
I would like to first take some time to thank the people who have helped me along this journey.
I tend to get a lot of the credit for the care provided to Jack during his life because I’m the one who is out there - on the world-wide web sharing Jack and my experiences. However, let there be no doubt, there wasn’t anything I did for Jack, that I did alone.
First and foremost, but for the grace of God, I would never have been able to get up each day and put one foot in front of the other these last fifteen years.
Then there is my silent partner – my husband Mark - who always stood with me, by me and – probably most importantly, who knew when to get the hell out of my way. I couldn’t have chosen a better partner to have traveled Jack’s journey with.
My children, Hilary, Mary and Eric – who gracefully stepped aside and asked so little of their mother who has spent the majority of their lives focused on their brother.
Two very special doctors who have been there for me since the day Jack left St. Louis Children’s Hospital attached to a ventilator – more than 14 years ago. Dr. Barry Markovitz and Dr. Anne Connolly, who thankfully never blocked me from their email, who were always there to lend an ear and to offer advice, support and compassion - especially this last year.
My sorority sisters, my comrades in arms – where would I be without you? We've all gotten up every morning since our journeys began wondering how we'd make it through another day, and gone to bed every night not sure how we did it. We did it with the camaraderie and love we so willingly share with each other.
Jack’s palliative care/hospice doctors - Dr. Wendy and Dr. Shaw - who were there just when I needed them – when it was no longer feasible to travel back to St. Louis with Jack.
Pam Ruzi – the first social worker I ever agreed to talk with. She also came along at just the right time.
My family, friends and so many others too numerous to name, who have been there to support me along the way.
It took a village to care for Jack and it took a village to carry his mother through these last 15 years.
So, to MY village, I say Thank You!
Now to my sweet Jack.
I don’t think I will ever be able to adequately put into words the depth of the goodness, beauty and knowledge that child brought into my life. Jack truly defined what is important in life – simplicity, contentment, patience, perseverance and love. Jack challenged me on so many levels, he kept me grounded and he has given my life such purpose and direction. A little boy who spoke no words, spoke volumes by the way he lived each day.
To acquire wisdom, one must be an observer. Jack was the supreme observer. The wisdom behind his silence was piercing. There was a spirit about Jack that couldn’t be explained, but could be profoundly felt in our quiet moments together. I will always cherish those quiet moments, especially those we shared during the last few difficult months of Jack’s life.
For everything Jack gave to enrich my life, I wouldn’t change a thing. For all that Jack had to endure, I would change everything. Jack faced the hardships of this life with unprecedented joy and grace and he challenged me to do the same.
The loss of Jack is immeasurable. But, the pain of Jack’s absence is more bearable than the pain of seeing him suffer. I know the days, months and years ahead will be difficult at times, but I truly find peace in knowing that Jack doesn’t hurt anymore. And even more than that, that he is now experiencing the indescribable joy of heaven – which he has so rightfully earned.
So, where do I go from here?
With Jack in my heart, I will carry on with a little more kindness, a little more compassion, a little more patience, a little more wisdom and, above all else, I will do my very best to carry on with a SMILE.
And I hope all of you will do the same – in honor of Jack’s memory.