June 22, 2010 is etched in my memory forever. I call it D-Day – diagnosis day. It’s the day that changed our lives forever. It’s hard to believe that only six years has passed and it’s hard to believe that it has only been six years. A lot has changed in six years. A child that once ran everywhere is confined to a wheelchair. A child that once talked from sun up to sun down is silent. A child that viewed the world with wondrous eyes sees only darkness. A child with a smile that lit up a room rarely shows any facial expressions. I despise June 22 and all it represents and reminds me of.
We hope for more time with our daughter, yet time has slipped through our fingers. On the day we received Kate’s diagnosis I remember watching her eat and wondering how long she would be able to enjoy her favorite foods. I looked into her eyes and cried over the fact that her world would go dark one day. I watched her run after Lauren and knew that the days of carefree play were numbered. I looked at her chair at our dining room table and wondered how long it would be until that seat was empty. The news of her diagnosis was devastating, to say the least. I felt like I had to sit still and watch her die, but instead we found a way to live, love, laugh and embrace the life God gave us. It’s been a challenge. There have been many tears. Our hearts heal and break again with each new phase but we have found a way to hope against the inevitable and be thankful for each victory, big or small.
Team Kate 5K
On May 7 we held our fourth annual Team Kate 5K. First let me say thank you to everyone who supported the event!!! THANK YOU, THANK YOU, THANK YOU!!! Each year we discuss whether or not to have the 5K. We worry about whether or not people will sign-up, will the weather be nice, etc. And each year we are blessed by a community filled with friends and family that support our daughter and our fight to create awareness and support research efforts. It’s an amazing and humbling experience every time. This year we had an AWESOME group of people who helped plan the event. They were fully invested in the event and made the planning of it a lot of fun. We are so thankful for the team and everything they did to make the event a success. We want to thank the sponsors who helped offset the cost of the event. Some of the sponsors have been with us from the beginning, while others were new this year. We are so incredibly thankful for each of them and know that without them the event could not happen. For those of you who purchased a t-shirt, I hope you will look over the sponsors listed on the back and help support the businesses when possible. To those of you who ran, walked, bought a shirt, donated a raffle item, etc. once again, thank you! I wish there was another way to express our gratitude or words that better express it, but there doesn’t seem to be. Please know we don’t take your support for granted and are humbled by it. Your generosity improves Kate’s quality of life and for that we will be eternally grateful!
A very special thank you to our church family. Brock and I knew several of you came out to join us at the 5K but we didnt realize how many until we saw the group photo, which didnt include everyone. The way you surrounded us with love and support leaves us speechless. You embraced our family when you barely knew us and have continued to show us love and support. Thank you!!!
In February Kate had a procedure done to “kill” 3 of her saliva glands. We were very anxious about the procedure because Kate had to be put under for it. However, she came through it without issue. Okay, with minimal issues. She had to stay in recovery longer than expected because her oxygen level was lower than they would have liked. However, after an hour or two of monitoring her, the nurses and doctor realized that her normal was different than that of a “typical” kid. Once they realized that she was stable we were able to take her home to rest and recover. The procedure has helped for the most part. It wasn’t a cure but her quality of life is better. The goal was to reduce the production of saliva, thus reducing the chance of choking and aspirating, which can lead to pneumonia. We have seen a slowdown in her saliva production, which means we are not suctioning as much. This has made life for Kate, and us, better. Over all Kate has been in great health. She has had a few colds here and there but overall she has been well. We are so thankful for how well she has done over the last six months.
School is out and summer is here. While I love summer and enjoy the freedom it brings, I wish for Kate it wasn’t so long. Summer can be very boring for her. Kate thrives on chaos and noise. The quiet of home has never been something she enjoyed. Grandma Patti and Grandma Jo are Kate’s primary care takers during the day and they do what they can to keep her busy. They read to her, go for walks, shop, play, do therapy, etc. But it is clear that Kate misses her teacher, aids and friends. This year the school is offering summer school for two weeks in July and I think that will be a great time for Kate. She will enjoy the chaos and attention that goes along with each activity and event. Yesterday Kate was able to put her feet in the pool and we hope to get her swimming very soon. Kate is unable to control her body temperature; therefore the water has to be very warm for her to withstand it. Thankfully it has been pretty warm over the last few weeks, so she should be able to go swimming very soon!!
The annual BDSRA conference is a few weeks away. We are looking forward to seeing the seeing the other families and catching up on how everyone is doing. Travel and being out of our routine can be hard on Kate, as well as the other children. Please pray for safe travels and health for us and the other families attending the conference. Thank you!
Exciting News / Big Announcement
You are cordially invited to
KATE’s 10th BIRTHDAY PARTY
When: September 10 at 6pm
Where: Vaughnsville Community Center
Party details: Admission cost $5 per person with a family maximum of $25. We will be watching a movie on a large movie screen. The cost of admission includes the movie, a bag of popcorn, and a piece of cake. We will also be selling candy and flavored water. Feel free to bring your own drinks (no alcohol). Bring your blankets and pillows or sit in the stadium seats. We hope you will come and enjoy some family time together and help us celebrate Kate’s birthday. (Gifts are not expected, however if you bring one we will happily donate it to Nationwide Children’s Hospital or Toys for Tots.) All the money raised will go towards Kate’s care and research efforts (BDSRA)
One of the joys of childhood is having a birthday party or being invited to a friend’s party. Since Kate got sick right after her third birthday she hasn’t had or been invited to a child’s party. When I think of all the things Kate hasn’t gotten to do my heart breaks. No birthday parties, no dance recitals, no t-ball games, no flashlight tag, etc. I want her experience the joys of life, which is why we decided to throw a huge birthday party for our girl. On September 9 Kate will turn 10. This is a big deal for any kid, but for a child with late infantile Batten disease it is a HUGE deal!!! We hope to see you at the party!
Again, thank you to everyone who came out to the Team Kate 5K, helped plan the 5K, sponsored it, donated raffle items, worked the bake sale and games, etc. We are so blessed. Thank you for your prayers and support over the last six years. Honestly we couldnt have made it this long without your prayers, love, support and friendship. God has blessed us time and time again and we know that our faith is the only reason we can find joy among the darkness of this disease.
Have a fantastic summer and we hope to see you at Kate’s birthday party. I promise it will be a fantastic time!