The day the AED came, was perfect timing. ChloeJace had her first quiz bowl, and her teacher is not yet CPR certified. George and I were able to go and support ChloeJace and carry around this machine, so that she was able to attend. She did wonderful. This is her third year being in quiz bowl, for most of the kids it is there first year, for others it is their second. The most wonderful thing is being able to see my child, getting to be a child. Long QT syndrome has taken away so much of her child hood.
Later this week we were able to go to Cincinnati Children's Hospital and participate in a sleep study for LQTS. We made the 2.5 hour drive to the hospital. That was another thing I thought I was prepared for but was not. One thing that ChloeJace has not has is a sleep study. The respiratory therapist began the hour long process of putting the electrodes on ChloeJace, and a 12 lead EKG, pulse ox, ect. What we were doing was to help others that have LQTS. Certain types are more prone to suffering sudden cardiac arrest in their sleep. When that happens you don't wake up. I could tell with all the wires on that ChloeJace was scared, I was scared. In her life she has been in the hospital so much! Although scary I was happy that even at the age of 11, she was doing something that could help save others. At her age I started drinking, so to see her do such a selfless thing was wonderful.
I know God has a perfect plan for her life, I can't wait to see where she is in 11 more years
Jenn, your stories are so touching. I think what makes them so is the fact that in the telling of your life from its day-to-day events, you are lacing and weaving feelings and emotions - ones all of us have had ourselves. Perhaps we have not had your unique life circumstances, but each has had times of fear, confusion, heartbreak, failure, hopes dashed ... so THANK YOU for keeping it REAL. Your readers can certainly relate.
ReplyDeleteJenn, you are a very courageous young woman. I see such strength. It is very hard to watch your child go through horrific things and know that it is for the good of your child and will also help others. But, a part of you wishes she didn't even have to be in that place. Thank you for sharing your "true" story.
ReplyDeleteJennifer, I saw the photo of Chloe last week and tears came to my eyes. How hard it is for you! It is so hard to see your child scared and in pain. You are very strong and so is Chloe. I too pray that the AED was a waste of money and that Chloe will live a long and full life. She is such an angel!
ReplyDeleteDebbie