Life expectancy isn't something most of us sit around thinking about. However, it's been occupying my thoughts recently as I read an e-mail about one of Sadie's Aicardi sisters passing away. In the past six months, at least seven girls with Aicardi Syndrome have passed away. Some older (generally-speaking, 30 years +) and some younger. Most recently, we lost little Ava who was 5 years old. Her mother wrote a very moving and poignant blog post about Ava's final days. (WARNING - have tissues handy.)
As hard as it is for us to grasp, we know Sadie will have a shortened life expectancy. Meaning both Adin and I will likely outlive our daughter. I believe the most recent data shows that the average life span for girls with Aicardi Syndrome as 10 years, median of 18 years. This got me thinking - how do you prepare for such grief? Some parents write bucket lists, others pray for miracles, some just try to put it out of their minds. Honestly, we don't spend a lot of time dwelling on Sadie's life span, because quite simply, it makes us both too sad.
Reading these emails about Aicardi girls who have passed is always an emotional blow. Something you've worked so hard to put in the back of your head and ignore, again comes to the forefront.
Many parents of medically fragile children are all too familiar with calling 911 or visiting an emergency room. Luckily, we've only had to call 911 for Sadie once in her life. Paramedics rushing through the house at 2 am is quite scary. Sadie has been in the ER a number of times in her short life - at one point in time, Sadie was a frequent visitor to the ER at Children's Memorial Hospital. Luckily (or unluckily) some of the ER nurses and doctors even know her there. But, taking her to another ER frightens me quite a bit, especially after reading this article.
Along those same lines, we get asked occasionally about our thoughts on having more children. Now, we expect and understand when those questions come from well-meaning family members, but it always takes me aback a little when it comes from someone with whom we are less familiar- like the dental hygienist.
Although I do understand people's interest in wanting to know our plan...so here it is.
Before Sadie was born, we always imagined that we'd have more than one child. After Sadie's birth - even before her diagnosis - I wasn't so sure. Parenting is difficult. Parenting a child with a severe neurological condition and special needs is particularly difficult. The amount of time spent in caring for Sadie is extremely high, so involved that I simply cannot imagine having to care for a second or third child. Additionally, Adin and I often speak about how we want to have time to share with eachother as well (after all, we married eachother for a reason). So, Sadie will likely be our only child.
I know many who may disagree with this decision, but it is an intensely personal one, and one that we make alone. And after all, God may have a different plan, right? And yes, there is a bit of grief that we experience knowing that we may never have a typically-developing child. But, we consider ourselves blessed that we have Sadie.
As the parent who wrote the bucket list for her daughter said, "We could go around and cry all day long or we can enjoy the time we have with her." We choose the latter.