Tuesday, December 1, 2009
Even in the worst moments of fear and desperation in our journey over the last two years, I have always been able to pinpoint the positive. To share my overwhelmingly intense feelings of love and adoration towards my family and even my circumstances. Sure, there are several times a day when my heart beats a little bit faster, and my teeth clinch at the thoughts of the unknown... but we march on. What choice do we have? When life starts spinning out of our control, many people will turn to anger, sadness, resentment, pity, fear, and depression. All feelings I have certainly dabbled in over the course of this experience. The experience of having a sick and disabled child. My firstborn, and so by definition the center of my universe for quite a while. But how can we see through these feelings, overcome them, live in hope while at the same time accepting life as it is right now, and embrace it? I wish I had the answers, and for me, this blog has been the most therapeutic part of the journey, because it affords me the opportunity to sit down for a minute and reflect, then pause before moving on. So for that opportunity it has lended, I am forever grateful.
Now that Kaylin is 19 months old, and doing all of the things neuro typical children do, it is even more blatently obvious how severely impacted Avery is in every way you can imagine. I don't resent Kaylin, and in fact, I am over the moon elated that she is so healthy and "normal." It just paints a clearer picture, and again makes me so thankful for BOTH of my lovely daughters and the lessons they bestow on me daily... if not hourly.
But as I watch Kaylin desperately try to win her sister's attention (a virtually impossible task) and give her kisses and tell her she loves her.... (despite nothing in return) I must admit I have a few moments when I let the forbidden words "why us" eek in and steal my serenity for a moment.
Why do we have to watch our daughter's suffer because of Autism and mastocytosis? Why do we have to go broke looking for new treatments, medications, and alternative approaches? Why do I have to stay up at night on the internet for hours at a time doing research on how to help her, why do we spend all our free time driving to and from therapy, special school, and doctors appointments? Why can't we just do playdates, go shopping, bake cookies and read books? Why do we have to listen to screaming and crying in the middle of the night, and not have any clue as to how to help? Why? Why? Why?
Well, why not? Why not me? What makes me and my family so much better than everyone else that we wouldn't have hardships, tearful nights, and gripping anxiety? I am as equipped as any, if not more so given my education and training. But sometimes, just sometimes, I find it hard to be grateful. But it only takes a moment. A brief second to snap me back to optimism. And even when I am not looking for it, I can see the beauty in a stolen glance, and in an excited smile when I lay in bed with Avery or pick her up from school.
So I remember. I remember that within her diseased body and damaged brain there is a beautiful, loving, sweet, happy little girl. My little girl, my first born, who I would walk through fire for. I remember that through this circumstance, I am stronger, better, more driven, have more purpose, and more joy in the simple things than I EVER would have been able to without all of this. So then I am thankful. Thankful for all of it. I am blessed to be Avery and Kaylin's mom. I have so much to be grateful for, and I learn more about the countless reasons every single day.