Hope for the Holidays
We just wanted to say a huge thank you to everyone who contributed to the Christmas party on Dec 2nd. Having toddler twins with CF is not easy, but we had an especially rough fall including many GI issues that resulted in two hospitalizations and an outpatient procedure. Both girls also had colds that turned into CF exacerbations and required increased treatments and antibiotics. Emmalyn bounced back a little quicker but it took Ashlyn two full months of increased treatments to get back to her baseline. After going through all of that we decided we were not taking the girls out to any of the Christmas parades and events around home. It broke our hearts to have to miss out on traditions like pictured with Santa but it just isn’t worth the risk of getting them sick again.
Both girls had a day full of appointments on Monday the 2nd. Since we live so far away it has become our normal routine to come to Cincinnati the day before and not leave until the day after appointments. This way we can, for the most part, keep on our normal schedule with the girls’ vests and respiratory treatments, tube feeds and still allow the kids a little time to bounce around and burn off some energy. When we are able to stay at the RMH, we are so beyond grateful. The House has definitely been an amazing blessing for our family.
After a long day in clinic we came back to our room and got everyone down for late naps. Then my husband then took our son, Sully, to go check out the festivities for the evening while I stayed with the girls. After a while they came back to the room with some delicious food. It is always a relief to have the option of a nice meal after a stressful day. They were very excited about party that was happening! They insisted we needed to come join the fun. The fun and magic of Christmas had come to us! We took all three kids back to the lobby and they had a blast as I stood there and cried. I cried to see them actually getting their picture with Santa this year, something I thought was not going to happen. I cried to see them dancing and laughing and having such a fun time. I cried to see the magic in their faces and the twinkle in their eyes as they stared in awe at the Christmas tree, watched the balloon lady make wonderful creation and danced to the music just like all the other kids. After a long day of appointments and having to be cooped up in exam rooms this was the perfect evening to come back to. We probably should have made the girls wear their masks while being in the crowd but it was one of those moments we decided to just let the kids be kids. Everyone got to move and burn off some energy, experience the magic of Christmas and just forget all the medical stuff for a little while. We don’t know how to express our thanks and gratitude to everyone.
To all the staff, volunteers and supporters of the RMH, Thank you for all that you do. We will do whatever it takes to get our girls the medical care and treatment they need. But you guys sure help make our long road trips a lot easier. We appreciate your warm smiles, interaction with the kids and all the work you do to make this place available to families like ours. The RMH will always hold a special place in our hearts and that includes all the amazing people that work there and make it possible. From the bottom of our hearts, thank you.
We wish you all a very Merry Christmas! Thank you for bringing the magic of Christmas to us! You gave us the opportunity to make Christmas memories we otherwise would not have gotten to make this year.
Jake, Dawn, Sully, Emmalyn and Ashlyn Fraizer