The long road traveled thru medical issues has changed my outlook on life and how I make decisions. With each diagnosis we have had to make some very hard decisions about treatment and how aggressive we need to be. Larkin was hospitalized at 5 months when the first seizure type hit for her to be evaluated and for me to be taught how to give her intramuscular injections.
It was a long night for us both and I ended up tucking her into my body and holding her so she would rest. I lay there thinking about what was ahead and I had two very hard questions for the rounding Neurologist who entered our room at 6:00 a.m. I was in the fetal position with Larkin tucked peacefully, safe, and secure into my chest when Dr. Kennedy woke me with a gentle touch.
We spoke in hushed tones as she asked about our night. I swallowed hard and asked about the medication and treatment we were forging into and choked on the words “I don’t have a choice” to which Dr. Kennedy responded “You have a choice Amy, you just don’t have a good one.”
I waited for a second, my heart pounding, mouth dry, and again found it hard to breathe but managed to ask, “Does this mean she will be more delayed?” Dr. Kennedy said in a soft, gentle, hushed tone, “Yes Amy we typically see significant delay with these types of seizures.”
It was instinctual for me to curl up further and pull Larkin into my chest and if I could have pushed her back inside my body to protect her I would have.
Fast-forward to August of 2007 where I wrote about the Lennox–Gastuat syndrome diagnoses here.
I did a lot of research while trying to make these awful decisions. I spoke to the few parents I could find, read the one forum that exist for parents, and read a ton of information from medical journals. The words Dr. Kennedy spoke to me in May of 2006 kept echoing “You have a choice Amy, you just don’t have a good one” ~ words that ended up being more profound than she or I could ever know. Parents were making decisions to not treat because the side affects of the medication could kill their child but by not treating with the medications our children don’t have any chance of recovery or quality of life. Not a great choice. Larkin’s Neurologist always said to us that Larkin needs a Quality of life.
That triggered a saying my mother uses “mind your P’s & Q’s” and I started searching for the source of that quote and found that there is no determination as it serves so many purposes. My mom said it us when we walked out the door as a reminder to behave and control ourselves. Control being the operative word for those of us who live in situations that require a great deal of it ~ I am one of 7 kids so my mother needed a lot of control. We as parents had to learn to control who came into our lives due to Larkin’s immune system being compromised and our fatigue made us realize that the free time we could take was precious and we refused to waste it. We have to be vigilant that medications are taken at the proper time, proper dosage, and ever watchful for potential issues.
I had to come to terms with the fact that there are 2 Q’s in life ~ Quantity & Quality ~ and only one that I could control. . I no longer angst over a choice of how a treatment will affect her quantity because I am not in charge of that Q. I have to find faith that the Quality of her life will improve. That is MY Q.
God is in charge of her Quantity.
Andy and I are in charge of her Quality.
I talk to parents from all over the world about West Syndrome (Infantile Spasms) and Lennox–Gastaut Syndrome and inevitably the conversation always turns to their fears of medications/treatments. I pose the question to them each and every time and it invariably works. Are you charge of Quantity or Quality and I urge them toward helping their child live the very best life possible while they are with us. This same question can be posed to all of us no matter what we are currently trying to control.
Our Q is being minded beautifully and I am relaxed trusting God is doing the same with His Q.
Knock on wood, but I was thinking the other day how Larkin has been so healthy in the past year. No hospital stays and I’m pretty sure she’s only had a cold or two!! Her immune system is growing along with her personality, explorations and individuality. She makes gains all the time and it’s thanks to her Parentologists!! Big hugs to you!
What a beautiful post. Amy, you are such an inspiration.
Such a moving and beautiful post, Amy. A compelling reminder that God is in charge of the quantity, and we as parents, the quality. Thank you for sharing your experiences and thoughts.