Thank you for checking in on our family!
Eight Months
August 25, 2010
We still can’t believe Jack’s physical presence is not a part of our daily lives. Things like going to the Royals game, swimming in the lake, going on vacation or doing anything fun is done with a dull ache. We will most likely never have an experience, adventure, trip, celebration, accomplishment or milestone in our lives and not miss him being with us.We have been watching some of the “Boston Medical” episodes (as weird as that sounds) on ABC, which basically picks at our emotional scabs. Some of the old sights (Children’s Hospital, the Brigham, the Pru, Fenway), sounds (the constant hum of ambulances soaring down the street), and even a few faces bring us back to a happier time when we had Jack and hope.
Boston represented so much to us~ most importantly the conviction that we were giving Jack a full heart and life.
Our months in Boston were full of ups and downs. Jack was still with us, full of determination and strength and always presenting challenges to us and his caretakers. How we miss those determined brown eyes, those skinny arms pointing to the door, those cold feet squirming in impatience.
Jack did things in his own way, in his own time, always confident in his decisions. Jello and Wheat Thin sandwich? Yes, please. Spoonfuls of pimento cheese? Sure, I will eat it. Running away from home? You bet, if it gets me to the park faster. Live a full life in four years with only 80% oxygen and half a functioning heart? No problem.
Teach a couple of 40 years old so much about love, sacrifice and family? Accomplished.
The three of us are living our lives, albeit with heavy hearts. Trying to be normal, do normal things in an abnormal circumstance.
We recently took a small vacation to the Lake of the Ozarks. A simple drive with little complication (four highways including ½ the way on a two lane and only one episode of vomiting), little fear, and most importantly Will had lots of fun.
We still missed Jack. We pondered about how our little adventure would have been with Jack, and how much chaos would have ensued and all the joyful noise coming out of those two boys in the back seat.
Although it has only been 8 months, it feels like forever since we saw his face, held his hand, whispered in his ear.
Jack, we love you and would give anything to have you with us again. We look for you every day; you mean so much to us. Will asks about you all the time. We will never forget you, our sweet, confident, determined first born.
Thanks for letting us ramble.
Sam and Bridget
Take Me Out To The Ball Game
July 27, 2010
Just a reminder to join us this Sunday at the KC Royals game~ $5 per ticket will be donated to Jack’s Heart Fund. Click on www.royals.com/jacksheart to purchase your tickets!We will be tailgating before the game. Just tell the parking attendants that you are with the Jack’s Heart Fund Tailgate in Lot N and they will direct you. The best gates to enter the parking lot will be either Gate 5 or Gate 6.
We will be there by 10 am. This is not a “formal” tailgate, but bring your grills or sandwiches and join us before the game. Next year we will have our acts together and provide the food and a tent.
And if you have questions or are interested purchasing a “Jack’s Heart Fund” t-shirt, contact bridgetconway1967@yahoo.com. His logo is on the front, website address on the back. We can bring the shirts to the game.
Hope to see you Sunday at the “K”!
Sam, Bridget & Will
One Year Ago Today
July 19, 2010
One year ago today we embarked on our journey to Boston, to fix Jack’s heart and to give him “the rest of his life”.As you all know, the exact opposite happened.
I am filled with all sorts of emotions this week as I relive “what were we doing one year ago”- frustration, anger and sadness. I remember how scared but excited I was before we left, I just knew that things were going to be fine, I could have never imagined this outcome.
I dread the coming 6 months, for I can actually know what I was doing one year ago having so meticulously documented it on this website for Jack. Thinking that someday he would read it and have a sense of what he had been through, the obstacles overcome and the road he had traveled to a full and healthy heart.
It now stands as a testament to a short well lived life, which has provided inspiration for people he in many cases never met. I always said he would change the world but I imagined it a bit differently than how it is now happening.
Jack is changing the world literally one gift card at a time. In the short months since he has died, the fund created in his name has given away a few thousand dollars to families who are in the same situation were were in one year ago. What a wonderful way to keep my little boy’s memory alive!
Sam and I feel like we were lucky to have Jack for those 4 years and 4 months. Jack and Will are the greatest gifts we have been given, both special in their own way. We will always love them both with our whole hearts.
Thank you for listening and for supporting my family.
Bridget
P.S. We would love to have you join us in honoring Jack's memory by purchasing a ticket to the Sunday, August 1st Royals game with $5 per ticket donated towards helping other heart families as they face long hospitalizations. Click on www.royals.com/jacksheart to purchase your tickets. We are sitting in Section 240, Row RR.
We will be tailgating too before the game. Just tell them to let the parking attendants that you are with the Jack’s Heart Fund tailgate in Lot N and they will direct you. The best gates to enter the parking lot will be either Gate 5 or Gate 6.
And if you are interested in a “Jack’s Heart Fund” t-shirt, contact info@jacksheartfund.com. His logo is on the front, website address on the back.
Missing My Jack Today
June 26, 2010
Today marks six months since I last held Jack in my arms.Oddly enough the today is like most of the days we live. Sam has cut the grass, Will and I have run errands and now I am thinking about what we will have for dinner. The house is quiet, except for the sounds of Will playing in the other room.
But today isn’t like most days, it marks another milestone in our journey as a family without Jack.
Jack would be four years old, quickly marching towards being five. He most likely would be in a summer mother’s day out program, this time with his brother Will tagging along. Our summer days would be filled with swimming lessons, picnic lunches at the park, Sundays at the lake and swimming with cousins at the pool. I can shut my eyes and see it, the fights over things with Will, the lifeguard blowing his whistle at him, the look of pure joy at throwing rocks in the lake.
I am also filled with remembering all the feelings of last summer, how I was anxiously looking forward to our Boston trip and when we returned home it would be with a child who had a bright and hopeful future ahead of him. I am slowly accepting that God had another plan for our family.
Part of that plan is to help out other families who find themselves in the same situation we were in. When Jack was alive, Sam and I tried to reach out to other heart families and show them that even though the diagnosis may be scary, the outcome can be awesome. Now that we can’t really portray that hope, we can help out those heart families through Jack’s Heart Fund and in the process, help ourselves.
To that end, the first fundaiser for Jack's Heart Fund will be at the KC Royals game on August 1. Please join us in honoring Jack's memory by purchasing a ticket to the game with $5 per ticket donated towards helping other heart families as they face long hospitalizations. Click on http://www.facebook.com/l/f14e0bOviTEniJNkaRxZVY9xloA;www.royals.com/jacksheart to purchase your tickets.
We will be tailgating too before the game. Just tell the parking attendants that you are with the Jack’s Heart Fund Tailgate in Lot N and they will direct you. The best gates to enter the parking lot will be either Gate 5 or Gate 6. And if you are interested in a “Jack’s Heart Fund” t-shirt, contact info@jacksheartfund.com. His logo is on the front, website address on the back.
Thank you so much for your support of our family, for keeping us in your thoughts and prayers. It means so much to us.
Enjoy your Saturday.
Bridget
Happy Father's Day
June 18, 2010
Father's Day- This is one of the best days of the year – besides the Dove Hunt in St. Joe. This day reminds me of what becoming a father really means. This year is no different. Being a father means that knowing you have provided for your children in the best way possible and you would go to the ends of the earth to ensure that they live their lives to the fullest. I tried to live each day to the fullest with Jack – playing catch, playing with trains, eating what we want (oatmeal pies and pimento cheese spread), playing golf in the front yard, catching worms and fireflies, and letting him get away with about whatever he wanted – it made him happy. With Jack’s heart we thought we were pursuing the best option for him in the world and the way it ended with him was the furthest thing from our mind - not even a possibility!
While in Boston, Bridget and I constantly fought to understand what was going on, challenge the doctors, nurses, and fellows on the care for Jack to ensure he was getting the best treatments – we were very involved in his care. When he was extubated we had him moved from away from the ice machine because he was thirsty and wanted a drink. We were with him day and night and at times overnight. We talked to him, held his hand, sang to him (although my bad singing voice did not help – I have my own father to thank for that), we prayed for him. We worried about and cared for him constantly. We held him and after he passed away we bathed him.
This week we picked out his gravestone.
Jack and Will are a positive influence on my life. I always said that Jack taught me about love – the love of a son for a father and father for a son. Will is teaching me about recovery and recuperation. Will also reminds me what Jack taught me - being a father is a gift.
This year on father’s day please remember all the dads, grandpas and uncles that make sacrifices in order for their babies to overcome heart defects.
On a posititve note, a fundraiser is being planned for Jack's Heart Fund at the 8/1 KC Royals game (1:10 start). This is a great way to enjoy the game, take in the new stadium and in the process help heart families who are in the midst of an extended hospitalizations. More details are forthcoming, there will be a website where you can purchase tickets.
Thanks for checking in on me and the boys.
Sam Robertson
