I realize that I didn’t post about Kendall’s 1st grade year. So many wonderful things happened during the school year for her last year. She continues to thrive socially, drive her chair, progress in her literacy, use her communication device, and vocalize her joy, anger, and excitement. She is sleeping better these days and her health is relatively stable. With the addition of a new continuous blood glucose monitor assisting us in her Type One Diabetes management, her Hemoglobin A1c’s are the best they’ve been in years. Her vesicostomy has eliminated UTI's from our vocabulary, and Botox continues to delay our inevitable hip surgery. I don't talk about seizures. Ever.
While the past year and seven months has been filled with much happiness, we have faced some loss too. A couple February’s ago, she lost vision in her left eye completely. This was a huge punch in the gut for us. The short story is, she developed a Strep infection that latched on to her shunt and it had to be removed. The infection and trauma to her eye was so great, it detached her retina. We did everything we could to save it, but just couldn’t. She is adjusting accordingly. She is so strong.
This past year I also lost my mom. Kendall lost her biggest cheerleader. Every single blog post I have written in the last seven years, I guarantee my mom was somewhere in my house holding Kendall, rocking her, reading to her, massaging her, singing to her, or praying for her. She did these things because she loved that little girl with every part of her being. She also loved me the same and wanted me to have breaks. She frequently hugged me and held me encouraging me that I was doing a good job raising my kids. There wasn’t a day that went by that I didn’t talk to her and receive some words of encouragement. To say there is a void in her absence is an understatement. My world stopped.
The month after my mom passed, our beloved nurse, Angie, who was with Kendall since she was 14 months old, moved away. Another loss that cut deeply.
Grieving for my mom opened my eyes to so many things. It changed my perspective on what is important to me. In times of loss, you really do see people’s true colors. I received so much support from so many people (and unfortunately, there were also people who I once really cared about that I will no longer bother with ever again.) But mostly, I was overwhelmed with the kindness shown by those who didn’t even know my mom, but wanted to be there for our family. Donations in lieu of flowers went to the Cook Children’s Foundation and were set aside for the sibling programs. I am embedding the video played at her memorial. I know my mom would have been proud.
Through the many days of sadness in the past year, especially the weeks leading up to her final breaths, I was able to develop a sense of peace. Not just with my mom, but with Kendall too. Dying is inevitable. But living, living happy, that is a choice.
I could focus on the things Kendall still can’t do, or feel sorry for Justin, Kamden, and myself that Kendall still requires 100% care and we can’t do things normal families can do. But I choose not to feel that way. I choose to celebrate every breath she takes. I choose to focus on the positive and celebrate the goodness in the people who take time out of their lives to help and be blessed by Kendall. I am grateful for Kendall’s grandad (my dad) who lost his soul mate of 50 years, but continues to show up each day to get Kendall off the bus with a smile on his face! (he also showed his love and loyalty to my mom by staying by her side non stop until her very last breath)
I know we are blessed. Some days it is harder to recognize that. But we are.
So, since I don’t know how long it will be until my next blog post….for those young families that may have just received a devastating diagnosis and are frantically searching the blog-o-sphere for encouragement, please know this: You can do it. Just look back to my first post and seven years later….this girl continues to prove the Dr.’s wrong!
In Loving Memory of Roxie O'Rourke (aka Nonna)
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