"How do we value life? Count all the fingers and toes. Look at the head and make sure it looks like every other kid's head. Think about the brain; make sure it will work like everyone else's. Is the value of life just the sum of its parts?" (Mooney, 2007, p. 191).
This year our letter is going to differ from the past. It is all about how we measure what is valuable in this world. Sometimes it is in the things that everyone else considers a nightmare that you find the most value. A lot typical stuff happened this year – vacation, work, play, volunteer activities, and laughter – but it just seems that we can only focus on the last few months, which teaches us this lesson.
Our world was turned upside down in October when Quinn received a diagnosis of Infantile Spasms (West Syndrome). Don’t let the term spasms fool you – this is a very serious seizure disorder. Lucky for Quinn she has Down syndrome! We bet many people in the world would be shocked that this is something to feel lucky about, but it truly is. Down syndrome can help Quinn’s prognosis and response to treatment. That extra 21st chromosome has helped us in a lot of ways, this being one of them. October was left with two hospital stays, learning how to inject our beautiful daughter with medication that costs $30,000 a vial, and a little hospital station being constructed in the corner of our living room. November was left with a child who would not take naps, who was screaming and crying in pain from the medication, who wouldn’t play, who wanted to be held constantly, and who started, slowly to get better! Once again we are thankful for these things. What? How can one be thankful for the bad? It is because it is through the bad that we truly realized how blessed we are. It isn’t until your child doesn’t smile or interact anymore that you see what an actual blessing even a smile is. Sadly, it sometimes takes things like that to make you realize just what you had. We are happy to say that Quinn’s smile has come back and we will never take it for granted again. For December, we are looking forward to witnessing Quinn get back to her old self as her medication tapers off. We optimistically hope that she stays seizure-free after her medication ceases on December 21; that would be the best Christmas present we could receive. Quinn has taught us so much, and we are lucky to have her in our lives. Going back to Mooney’s quote above, it is not through the sum of her parts that we find her true value; it is through Quinn in totality that we see the greatest value possible.
It was a blessing to hear our boys bicker and fight this year. What, fighting is a blessing? Yes! It shows that Riley and Aidan are healthy, opinionated, and strong. They have kept each other busy and occupied during the last few months. Sure, they don’t always get along – but they are brothers! They fight, get it over with, admit to what they did, are honest with one another, will forgive each other, and then welcome one another back with open arms. There is a lot to be learned from that series of events. They have handled the situation with Quinn with such grace, understanding, and love. They both love school (Riley is in the 3rd grade and Aidan is in Kindergarten). They love sports (soccer and baseball for Riley and t-ball for Aidan) and video games. Aidan still talks about marrying mom. Riley still loves to learn more than anything else. The boys made us laugh and smile so much this year! They also made us forget about things that were worrying us, especially when we had to break up a fight. We are blessed to have our beautiful sons in our lives. Again, their true value is not in the sum of their parts – it is much more than that, they give us so much.
It was a blessing that Neal was laid off of work a few years ago. Again, most people may think why would we consider this a blessing, but it is really Neal that helped Quinn get through all of this – he was in charge of the injections (every daddy’s dream, right?), he took her to the doctor countless times, still tried to carry on with therapy despite her mood, and, most importantly, held and loved her. He juggled all this with spending time with the boys, taking care of the house, and keeping his position as Head Trustee at church. Sure, everything wasn’t perfect – sometimes things were missed – but considering all that he had on his mind and on his plate, Neal did a pretty stellar job. Karyn helped as much as she could while juggling many things too, such as continuing to work four jobs (relax, only one is full-time). We both became experts in multitasking. Again, we didn’t do everything perfectly, but we did the best we could and appreciate the understanding, help, and encouragement from those who love us.
We aren’t saying that every time people can find something good in something bad – sometimes it may be very difficult and/or impossible; our hearts and prayers go out to those of you that have gone through something especially difficult this year. In addition, our story isn’t about hiding from your difficult moments and feelings of anger, sadness, and fear – our life is not picture perfect and we had our fair share of this in 2009 (not sure if you would want to read that letter). But the one thing you learn on this journey is the love and support you do have in your life. It will test some relationships and enrich some others, but in the end the important part is that you see the beauty in how some offer the greatest support to you. There is nothing like being built up and supported when times are tough. This support is what has gotten us through. Little things like a hug, a card, an email, or a favor. Support doesn’t have to be fancy; it just has to be present and full of love. We hope that everyone feels the blessings of support, love, and acceptance in 2010.
We wish you a very Merry Christmas and Happy New Year!
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.