What a year it has been. This past year has shown us love, compassion, endurance, understanding, patience, and most of all a knowledge of persistence to fight for the things that we are passionate about.
We have seen the inside of just about every ED room at CHOA Egleston with over a dozen visits. There is a lot to be said for the Nurses and Doctors that have been a part of our lives as we rush in to the ED, heart racing and not knowing what we should do, yet somehow, the CHOA ED staff always makes it “All Better” in no time, showing compassion and care for all of us. We have learned that having CF also gets a ticket into a room much quicker than normal. A trip with Hiatt reminded us that non-CFers have to wait the 2 ½ hours for a room on a busy night.
We have met the entire team of Nurses and Respiratory Therapists as we called “5 West” home five times, learning the do’s don’ts of CF hospital stays. We learned how to manage our family, work and hospital life all in the same breath. We learned that the hospital sink makes a great Jacuzzi for an infant and a comical relief from hospital life. We learned that the nurses of “5 West” are truly special and have a genuine heart for what they do, taking extra time and care with each child that enters its walls.
We have experienced a true sense of gathering from out family and friends. One amazing thing about CF is how it touches people and they grow a passion for fighting beside us to cure the disease. Our family and friends have joined us this past year in raising just shy of $50,000 as a part of Team Sutton Grace for a cure to CF. We have experienced more love from our family and friends this past year, helping us feel a great sense of support.
Corrie Smith has made a commitment to volunteering at the CF office this coming year, once a week, to help fight for her cousin. Tim and Amy Smith have put together a fundraising event that has the hopes and potential to grow each year in support of Team Sutton Grace. Sue Shaw and Becky Burnett have been our largest fundraisers and have played a huge role in building Team Sutton Grace. Britt and Sammie Williams have been instrumental in support of our home life with last minute calls to help with Hiatt and Sutton and just showing up at the right time, when we need it most. JV Gortney has been a supporter, fundraiser, executer, builder, planner and gives so much of his time to help Team Sutton Grace grow and has been critical to the success of our fundraising. TJ, a long time friend and part of our family, has gone the extra mile to make sure everything is perfect with our stays in the hospital, always there on those late nights when Sutton isn’t well and helps us figure out what is best, and always supporting us in every way she can. Joan Turpin has been a huge support with an extra set of hands at the hospital and at home, not to mention she can get the kids fed, bathed and in bed all before 8pm. George and Ellen Burnett will pick up and drive to the hospital or take Hiatt in their home when we have too much to cover on our own. Dr Kim Wise gives us extra attention and has been fully invested in Sutton’s growth and care, even in her personal time. The teachers and staff of day care have gone the extra mile, taking on the daily meds, extra special cleaning, our eyes and ears for health and growth and making sure they are just as much a part of Sutton’s care during the day when we are off to work, going above and beyond the normal duties of their job. The countless friends, friends of friends and even strangers that have supported us in fundraising and encouraging words that get us through each day. The list goes on and on.
We have learned A LOT about CF, with so much more to learn as we go day by day, with 2 hours of treatment, ever changing medicines, doctors visits and every proactive thing we can do to fight CF. We have become experts at administering pills to a 5 day old through a 1 year old. We have learned the scientific explanation and the conversational explanation of CF and just how to explain it to everybody. We also have learned that we have so much more to learn.
We have made so many new friends through CF. The CF Foundation has become a part of our family and our lives. They are always there for us and go the extra mile to make us feel special as well as all the other CFers. The numerous families that have CF children who share the same passion for a cure gives us a hope with a cure on the horizon. With only 30,000 CFers in the US, we sure have felt like there are so many more with the number of connections we have made. The best part is comparing notes on how to live life, making things as simple as possible for our children. We have met some inspiring CFers that give us hope for the future as they have paved the way to make the lives of the younger CFers easier. They have beat the median life expectancy given to them and are conquering CF with confidence.
We have watched our family of four grow into something amazing. Brittany has become the biggest super mom in the world. If you ever want to see somebody conquer the 25 hour day, come to our house at 530am and watch the wonders of a mom with a full time job, toddler, dog, husband and CF kid tackle the day, hit the pillow and get up the next day to do it all over again. (By the way, we don’t get weekends off). Hiatt has grown to be a part of Sutton’s daily life, making sure the “tickle’ vest and the nebulizer are set up correctly and in full working order, day and night. You better be careful not to try to manage these tasks on your own, otherwise you will experience an upset 3 year old, shut everything down and start all over. Those jobs are for Hiatt and he wants to be a huge part of Sutton’s therapy and life, teaching her things every day.
2014 is a new year for us. We are hoping for adventure, growth and success. We are hoping for a monumental year for CF research and breakthrough. While it doesn’t work for Sutton, another miracle drug is on the horizon for another large group of CFers, giving us hope that Sutton’s miracle drug is coming. We won’t stop fighting until CF stands for Cure Found.
As we close our 2013 and the long, tiring year it has been for us, we want to say how humbled we are by this past year. We have been making an effort to thank everyone individually for the support you have given to us. There are so many of you and I know we have somehow missed a few, but know that we will get caught up one day and won’t stop until we do. But for now, we want to make sure that everything little thing done for us is greatly appreciated. And the last thing I want to close this year worth of blogging, and the biggest thing we have learned, THANKS and that there is still time to donate for 2013 to CF by going to www……, just kidding. With Sincere Gratitude, Thank You All!