Some friends on Twitter asked those of us who blog about special needs to post our favorite blog post of 2010. This morning, I spent a little time reviewing all that 2010 brought us and how I expressed that through my words. Writing this journey gives me an outlet and a measure of peace when I hit the publish button. Many tears flow while I type, and once I finish, I rarely look back unless someone hits upon a specific topic I covered.
2010 was fine. 2011 I hope you are just as kind to us, and I will keep minding my Q.
My favorite from 2010: Minding Your Q
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 tough decisions about treatment and how aggressive we must be. For example, Larkin was hospitalized at three 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 tough questions for the rounding Neurologist who entered our room at 6:00 a.m. I was in the fetal position with Larkin tucked peacefully, safely, and securely 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, my mouth dry, and again found it hard to breathe but managed to ask, “Does this mean she will be more delayed?” Dr. Kennedy said softly, gently, hushedly, “Yes, Amy, we typically see a 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, when 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 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 deciding not to treat because the side effects of the medication could kill their children. Still, by not treating with medicines, 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,” 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 to us when we walked out the door as a reminder to behave and control ourselves. Control is 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 must be vigilant that medications are taken at the proper time and dosage and watchful for potential issues.
I had to accept 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 every time, and it invariably works. Are you in charge of Quantity or Quality? I urge them to help 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.
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