I had all but written this post in my head about feeling 'normal' lately. I had planned to apologize for being such a terrible blogger (again-I know) but the truth was I just hadn't been feeling like there was much to write about. The first few years of Ella's diagnosis of CdLS were so hard. Every day brought new questions and fears. I had so many emotions, so many questions, so many tears, so many what-if's, so many things to process. I had a lot to say and sort out. And say it I did. This blog and everyone who reads it has been an amazing outlet for me. It has helped me get through some really dark and difficult times and celebrate some incredibly exciting times. But over the past few years, something has begun to shift. Those fears about us never being a 'normal' family have all but diminished. Well.. kindof.
I haven't had much to say lately because things just feel normal. There isn't much to write home about.. or in my case to wring from home about. Ella is talking so much more, but it has been such a gradual process, it just feels normal. She is doing amazing in school, but has been since the beginning of the year so now I just expect it. She still loves gymnastics, but it's her 2nd year so I'm not so shocked by it. She is bright, funny, stubborn, silly, and lights up our life. Just like our other four kids. I don't look at her and see anything or anyone different than anybody else around here. Our days revolve around school and homework and family meals and playing and disciplining and teachable moments and bedtime routines and movie nights and sleepless nights and memories in the making and all that stuff that is just daily. For the first time since finding out about CdLS, I was finally able to say.. Life is really normal.
And then I woke up this morning and saw that Ella's sweet CdLS sister Annabelle passed away last night after a routine sedated procedure. That's the 2nd CdLS angel in our family to gain their wings this week. Winter is always so hard on our babies and this year has been no exception. My heart breaks on a weekly basis for families that I've never met in person but are connected to by heart. I've had a particularly special place in my heart for Annabelle ever since her mom reached out to me after reading the blog shortly after her diagnosis. I've loved watching her grow from a chubby little baby into beautiful little 2 year old girl whose smile was absolutely radiating.
Today has shook me as I am reminded again that although our life does feel so normal, it's still not. It's like we're stuck in the middle--hanging in limbo of living our daily routines yet still straddling the proverbial fence when it comes to our children's fragility. We have one foot in the 'typical' waters of life- going to work, parent/teacher conferences, kids basketball games.. and one foot in the murkier waters of the constant stream of friends with babies in ICU, life-threatening surgeries, and the constant unknown. I know no life is guaranteed, even a typical one. I do positively know this. However with CdLS or many other genetic syndromes, the chances are just so much higher. That's our reality. And we have to live with it and witness it every day. Ella's life has exposed me to so many rich things-so many wonderful people and experiences. But it's also exposed me to suffering and loss so much more than most typical parents would see.
So here I am. Feeling normal, yet not. Feeling thankful, yet heartbroken. Wishing CdLS didn't exist so these families wouldn't have to say goodbye to their babies so soon, yet feeling blessed by the amazing things it has brought into our lives. I feel stuck in the middle of this crazy beautiful life and a little unsure of which direction to turn.
My friend Christie said it perfectly. Our "normal" is really so far from normal. It's not normal to see a friend lose a child nearly every week & wonder if/when it's going to be your turn. While most days I love our "normal" because it's unique & it's ours & it's something we wondered if we would ever have, sometimes I wish we could have a different "normal".
Please keep all these families in your prayers.