Good morning on this glorious day!
We are taught that Christ went into the desert for forty days for a time of reflection. Jeanne and I entered our desert two years ago and on Ash Wednesday, we emerged with a better understanding of ourselves, the life of Jasper and the work of the Lord.
Please know this, Japer is in a better place and his soul and spirit have been set free. I share the fact that Jeanne, Riley, myself and others have had dreams of Jasper running, playing and smiling.
Please also know that through the Gift of Hope, Jasper may be able to help two small children live using his heart valves and spare two families from a very bad day.
St. Francis is a very special place for us. My Uncle Mike baptized me here and Jeanne and I were married in this church with my uncle giving the vows of marriage. Also, three years ago a very special moment took place on my parent’s 45th wedding anniversary at St. Francis. After the noon mass, we gathered for a private ceremony where Fr. John renewed my parent’s marriage vows and Jasper and his cousin, Grace, were baptized by Uncle Mike. There is a lot of love and very special memories in this church.
Do we miss our son? Are our hearts broken?
I remember Jasper crawling down the hallway as fast as he could saying, “ Da, Da, Da, Da,” when I came home from work. I can still hear the klippity klop, klippity klop sound of his crawling. Jeanne remembers Jasper grooving and dancing with his arm in the air to the songs of Bon Jovi while riding to and from aquatic therapy. We remember one of Jasper’s favorite games of sitting outside in his chair and throwing golf balls down on the patio and watching people retrieve them for him. The sound of Jasper’s excitement of when he and GiGi would play together with her cane, and their laughter would warm our soul. Jasper’s big brother, Riley, would work with Jasper’s hand and arm, encouraging him to use it time and time again. Another story is when jasper would be dropped off at his sitter’s house. He would peek over his shoulder, watch and wait until Debi wasn’t looking and quietly crawl over to a lamp and play with the switch on the floor: click on, click off, click on, click off… Yes we miss our son, but some plans are bigger than us.
Jasper has a truly amazing story.
He was hospitalized in late January and all of February 2007. He lost thirty percent of his body weight and was fed intravenously. I told him it was okay to be with God, but that was not the plan. He regained his strength and weight and was sent home. He recovered and was standing and babbling in no time.
Jasper was at the sitter’s house when he had his first seizure. Debi sprung into action and Jasper was quickly sent to Children’s Memorial at
The Fourth of July, 2007 brought family and friends to our house. Kids were playing, BBQs were cooking and we were enjoying each others company. That evening Jeanne had Jasper in her arms, he was seizing again. They eventually stopped, but we were worried. I packed a bag and went to Central DuPage Hospital where Jasper’s seizures returned for several hours. Later I told Jasper it was okay to be with God, but that was not the plan. His right side was extremely weakened, again. A port, G-tube and a muscle biopsy were done and Jasper was sent home. The results came back, a mitochondrial disease.
Jasper was back at the sitter’s house compensating for the loss of his right side. He would roll and drag himself to get where he wanted to go. We are not allowed to use the word, “Can’t,” in our house, Jasper never did.
He received physical, occupational and speech therapy twice a week at Marianjoy and later went to preschool at Independence School. Jeanne and I heard constantly on Jasper’s good days, the therapist would push and push him and Jasper would try and try to do whatever activity was asked of him. They would continue to challenge Jasper, but I wonder…who was challenging who?
Has Jasper challenged us all to smile through pain and never give up?
EEGs and MRIs would continue to come back with less and less positive information, but that never slowed Jasper’s determination or ours for him to live a normal life.
Now you know where our motto originates, “Not Without a Fight.” And everything was always done on his terms.
People keep telling Jeanne and me that we are strong, but how can we as parents not follow the example of Jasper and always push ourselves and keep smiling?
There is a picture of Jasper holding his cousin’s finger after his surgery from this past February. His cousin, Melanie, spent almost an hour letting Jasper hold onto her finger. She even turned down an opportunity to go and get ice cream in the cafeteria because she didn’t want Jasper to be alone. Melanie is nine. September 2007, she gave half of her birthday money to the Annual UMDF Chicago Chapter 5K Walk & Family Fun Day. I shared this picture of Jasper and Melanie, and someone came back with a phrase, “Holding onto Hope.” We are all ‘holding onto hope’ to better understand this disease and find a cure.
How do you define quality of life? Is it running around playing? We used to think so. Jasper was a child who had lost the ability to form words, never walked and eventually needed assistance for sitting and playing. But anyone who has come in contact with Jasper for a minute, an hour or his entire life has been captured by his infectious smile and beautiful blue eyes. And through his story, he has left a footprint on our souls.
God blessed our son, we don’t know how else to comprehend Jasper receiving the last sacrament on Tuesday, resting all day on Ash Wednesday with little or no seizures, receiving his ashes at a 4:30 service, going to a small benefit for him--surrounded by people who love and support him--and then taking his last breaths in the arms of his parents.
Is this the work of the Lord? Did He send down one of His angels? Did Jasper enter our lives to challenge all of us by His example?
Jeanne and I feel that Jasper was a messenger of God and we were blessed enough to be his guardian for the short time he was here.
Jasper’s brother, Riley, tells us about Heaven and Jasper. Jasper is in Heaven where Jesus fixed Jasper’s right hand and leg and he can run around and play with the sitter’s deceased dog, Cosmo. And on this past Tuesday, Riley reminded me that when he and I die, we will be with Jasper, all playing together again.
Children can sometimes break down difficult situations into simpler terms. On the day when we all take our last breath, we will be met by past loved ones at the Gates of the Kingdom of God.
If you find yourself asking, “What can I do to help?”:
1. Please remember, life is so precious and sometimes shorter than we would want
a. Please don't spend a lot of time asking why
b. Hug and tell all your loved ones how much they really mean to you
c. Reconcile any differences you may have with a family member or a close friend
2. Please consider supporting:
a. Make A Wish of Illinois
b. Hope's Friends
c. The United Mitochondrial Disease Foundation
d. Gift of Hope
e. Or any organization near and dear to your heart
Jeanne and I would like to thank you for coming out today, for everyone who said a prayer for Jasper and our family, or just kept us in your thoughts. We would like also to thank Great Western Steel, the Northern Steel Group, and Max and Erma’s for all your support and understanding. Thank you Dr Coker and Nurse Jamie. Also, thank you to all of the doctors and nurses at Central DuPage Hospital and all of Jasper’s teachers and therapists. We would like to thank everyone connected to Hope’s Friends.
Jeanne and I would like to thank our family and very close friends. This has been a difficult journey and we will continue to need you love and support. You actions will never be forgotten.
Jeanne, my beautiful wife, I could not have made this journey without you. I pledged my heart and love to you on this alter and have meant it every day. I love you… always.
Jeanne and I would like you to know, you are all part of our family now.
We have a poem by our front door:
Our Family is a circle of strength and love
With every union the circle grows
Every joy shared adds more love
Every crisis faced together makes the circle stronger
Thank you for becoming part of our circle and strengthening it.
May God bless you.
We love you Jasper, always!