I could see the sadness in the nurse’s eyes when I lay on the gurney holding my son. He was lethargic, pale and scared, and about to undergo his 12th brain surgery for a VP shunt malfunction. I was the only one smiling. I am pretty sure they, at least the one nurse, expected me to cry. I really wanted to but I knew I could not. Though the knot in my chest and throat tightened, I swallowed it whole and smiled more. “The feeling follows the behavior”, I repeated in my head. I have trained myself to this and it serves me well almost all of the time.
This is my little guy’s brain surgery in seven months, and this time, I just felt like I would crack. Instead of a malfunction as all the other surgeries have been, he needs to have a second shunt placed. Really? Sigh. On our way to the ER I cried my tears in the car while he gazed out his window into the fading sunshine. I put on upbeat music hoping it would help him as my silent tears slid down my face. I vowed to dry them by the time I parked the car, but lost it again when the doctor gave us the news. I push myself to be strong when I want to curl up and close my eyes. I just don’t have a choice. This little boy needs me like nothing he will ever need. Though I love being needed, I wish it wasn’t for this.
Singing to him and holding his stuffed frog up where he could see it, we waitied for the ride down the hall to the operating room where they will sedate my baby and bore yet a second hole in his tiny skull. I joked with the Anesthesiologist that he had to come back to get a matching set. They always look startled when I react with humor. But if I didn’t laugh I’d cry.
I am tired of being in the hospital. I am tired of being away from my other kids. I am tired of being away from my husband and not sleeping in my own bed next to him. I am organized, but with all the therapy scheduling I am overwhelmed. If I am going to be driven crazy, can I at least have a chauffeur? Please keep me laughing.
It really makes me re-think my definition of "difficult" times. You are in my prayers and thoughts and prayers. I only wish I could do more.
ReplyDeleteDear Lexi, my heart and prayers go out to you and your family. You are doing exactly what you need to be doing - taking care of your child. I used to make jokes with the familiar surgery nurses and doctors on that gurney ride which has now been replaced in my daughter's life with the walk to the OR. She laughs a bit nervously as I put on the funny yellow suit and hat and I will do a little duck waddle for her because she thinks I look like a duck and we walk down the hallway where she climbs up on the table for her 25th or was it 26th hydrocephalus related surgery...I understand about the laughter because we can't let them see how scared we are at the thought of surgery or any complications. My defense mechanism is to focus on the future and make plans for the normal life waiting for us outside the hospital walls and to minimize the past where hydrocephalus entered her life as a complication from epilepsy surgery in her 11th year of life. I find it amazing and sad that my daughter insists on returning to school two days after she leaves the OR after yet another shunt fails because she misses her friends...and it is her attempt to maintain what passes for normal in our lives between visits to the hospital. It has been a blessed two years since we have had to deal with complications - her shunts continue to clog but so far they continue to clear on their own. I pray for your life to return to the calm after the storm - I really do treasure these good times so much more!
ReplyDeleteKelli,
ReplyDeleteThank you for sharing that. I know you get it and it really helps when I find those who do. I love that this site makes that more possible. :-)