Kristin is now 24 years old. We are 10 years into this journey and we are weary both in body and in spirit. Despite the fact that I try hard not to dwell on it, at least a dozen times each day the realization that my beautiful daughter will most likely die fairly soon enters my conscious thought. What will her death be like? What will the world be like when she is gone? Will I be able to bear it? It kind of feels like we’ve been standing before a firing squad for 10 years. We’re just worn down. Maybe it’s a bit like PTSD, only in our case it’s Pre-Traumatic Stress Disorder.

It’s lonely. Kristen’s friends have all finished college, are scattered all over the country, and leading very busy lives. We don’t hear from any of them anymore. And many of our friendships have withered away as well, as it’s very difficult for us to get out, especially evenings and weekends.

We try to count our blessings – and there are many. The biggest one is that our girl remains one of the sunniest people we know. She is completely non-verbal now, but her facial expressions tell us that she is not suffering physically or emotionally and, in fact, usually seems very happy. On those rare occasions where she seems to be indistress it devastates us because she has no way of telling us what is the matter – or even whether she is in physical or emotional pain. We give her Tylenola nd lots of hugs to cover all the bases. Sometimes we hold her and cry with her.

Among our blessings we also count the incredible support system we have in place – many wonderful nurses including 3 who have stuck it out for more than 5 years, a wonderful physical therapist we call “Prince Charming”, a Palliative Care social worker, an adorable service dog drop-out named Annie, and several others. Our goal is to bring as much joy as possible into Kristen’s life. I have attached a few photos to illustrate that that is still possible. Dancing with Prince Charming…. Eating green mashed potatoes on Saint Patrick’s Day, goofing off with Annie. That beautiful smile is what keeps us going.

Blessings to everyone!

Provided by: Kim Rice