Sunday, March 4, 2012
Build Quality of Life
A sweet, spunky little bundle of energy who lit up a room with her laugh and her silly sense of humor. She was only a year older than Flannery.
I won't use her name here to protect her family's privacy. But I have to say--this little kiddo was one of my favorites. I know we're not supposed to have those. But there are just some clients I really "click" with, and she was one of them. She loved dress up, and playing pretend, and laying on her (amazingly good natured!) dog, and going outside in the rain. She was working on using "am" in sentences, and would say, "I running, I winning!" until I prompted her to say, "I AM running, I AM winning!"...which was just never as much fun to shout, I think.
One of the things I remember wanting to get out of our sessions, was helping her to play in a warm and successful way with her sister. My hope was that by teaching them fun games to play together (that also gave my client practice using the language structures I targeted in therapy), we would not only help expand her language--we would also improve her quality of life. It warms my heart to remember all the sweet times we spent together--my client, her sister, and me--making art projects, playing pretend, dressing up like princesses and movie stars, pretending to be powerful monsters or dinosaurs. And we still focused on our speech goals--and made some good progress, I might add! I remember that at times, her family would ask if I'd like some time to just work with my client alone without her sister. But the look on my client's face when her sister walked in the room and sat down to play with us was worth a zillion checks of data showing mastery on language goals. For those 30 minutes three times a week, we built more than grammatically correct sentences--we built quality of life.
And what a quality of life she had. A loving, strong family. Friends and neighbors who would drop everything to help out if they needed a hand. Classmates and teachers who loved her. A medical team that tried everything to keep her illness at bay--a gazillion experts consulting on her case, progressive doctors leading a valiant fight, countless hospital stays with nurses who became like family, two bone marrow transplants, and who knows how many other procedures. And throughout it all, there was always someone by her side--family members & friends rotating in and out to keep her feeling safe and loved.
My life was broadened by knowing her. My appreciation for all the little moments with my own family grew deeper as her situation reminded me not to take anything for granted. Her strength amidst pain and unpredictability made me realize how small my own problems really were.
And now, her death.
It is horrible and dark and wrong.
It leaves such a wrenching in my heart, thinking of her parents, her sister, her grandparents, having to return home from the hospital without her. Having to live out the rest of their lives, without her.
Such a separation must be unbearable.
But this. This is why Jesus came to us. To save us from this darkness, this chasm. This separation from the ones we love who have died.
He came to trample down death, by death. He broke the chains that would have kept us apart with no hope of reunion.
And this is important.
In a time of political correctness and openness and tolerance, I admit that I hesitate to say that there remain a few absolutes. But then I remember my grandmother's brave last words to her sister. "I want to know that you all love Jesus, so I can see you in heaven one day." When faced with death, my grandma's only fear was that her family might not know what was absolute.
My client's family has exceptional trust that she is in heaven. I have exceptional trust that they will see her again. And in the meantime, I imagine, I try to really picture...an amazingly beautiful quality of life for her, as she gets to experience the fullness of a life finally without pain, finally without suffering.
Who do you love to picture up in heaven, no longer suffering, but now perhaps praying to ease your suffering instead? I am rather sure that my Grandma Norma has interceded for me many times in this life, and I also somehow feel a connection to my husband's grandfather "Pop." And now, my sweet little client. My sweet, sweet little client. May her memory be eternal.