Tuesday, September 24, 2013


During the past few years I've wasted a lot of time comparing Ella. I've spent countless hours agonizing over other children her age and willing her to be like them. To look like them, to act like them, to hurry and catch up developmentally like them. I would go out in public and stare in shock at what other children her age looked like, how they acted, what they could do, and sadly.. what Ella couldn't. Consequently, I would find myself making a lot of excuses. Well, she was born 3 weeks early. Of course that's why she's so small. or She's spent so much of her life in the hospital, intubated and sedated. Wouldn't you be behind developmentally too? or She has such similar features to our other children. There's no way she has some kind of syndrome. 

When I would observe other children Ella's age and notice the differences in how Ella was not like them, I usually would have one of two responses. The first- overwhelming sadness. We would be at the pool and I would look mournfully at the adorable little pig tailed girl giggling and splashing in the water, running in circles and squealing with delight, while Ella clung tightly to my chest, terrified of even dipping her toe in the foreign substance. I would have to fight back the tears as I held her tight and rocked back and worth, whispering "It's all right.. it's all right," over and over again. Even though in my heart it wasn't all right at all. I would be at the park and watch a 2 year old excitedly race up and down the slide, then run to her mommy and chatter nonstop about her adventures, while I held Ella's hands and slowly, silently wandered around the perimeter of the playground. I would feel depressed, defeated. Like we could never enjoy life the way these other children were, without any of the limits holding them back like they did for my girl.

My other reaction would be denial. I would pull out an outfit for her age, say 12 months when she was a year old. It would be HUGE! No way would a typical 12 month old wear that.. No way.. Was it made for baby sumo wrestlers on some kind of hyped up children's steroid or what? There's no way a "normal" 12 month old could possibly fit into that outfit! It must just be that brand.. But then I would pull out another. And another. And they all appeared to be made for the man-children of Paul Bunyon. What gives? Or I would witness a another child so far ahead of Ella in all areas of development, and I would think, "Whoa.. now that kid is abnormally advanced. Some kind of miniature Albert Einstein for sure. Typical 2 year olds don't do that.. do they?"

I would even compare Ella to other children within our CdLS family. Oh, I'm sure you're not supposed to actually admit to doing this since we're all in this together, but I would. I would look at kids older than her and wonder which one she would be like in a few years. I would watch others her age and study to see if they were doing things she couldn't. I wasn't trying to be, or thinking that we were better than anyone else, I just wanted to see where she was at. How she compared..

Over the past year though, something has started to change. Those differences that used to haunt me every time I left my home? I don't notice them quite so often. I see kids Ella's age all the time. Whether it be a friend's child, a random stranger at the store, or someone on Facebook. I know in my head that they're almost the same age as my child, but somehow it doesn't affect me anymore. It doesn't make me sad. And I don't make excuses for why she is the way she is. I don't compare them. Oh, of course every once in awhile I'll be caught of guard and for a moment my mind will wander to the what if's. "Wow.. so that's what life would be like without CdLS." But for the most part I don't notice. Don't care. Something magical has happened. Even though Ella is not the world's typical "normal", Ella has become my new normal. I actually have no idea what a typical child her age "should" be doing or how big she "should" be or what size clothes or shoes she "should" be wearing. I don't really keep track. I feel no need to. I've stopped comparing my child to others and started to judge how well she is doing by her standards, not others. Ella is doing good for Ella. Even better. Ella is doing awesome for Ella.

And then Hudson was born. After JJ finally moved out of the way and I could actually see the baby I had just given birth to, I realized that our doctor really wasn't going to waltz in and diagnose him with another rare genetic disorder. And I felt fears start to creep in. Now that I had a typical baby, what did that mean for Ella? Would I suddenly see first hand what a typical child can do, is supposed to do, and be reminded on a ever present daily basis of how she is different? Would I compare them and their stages of development? Would it be painful to watch Hudson naturally develop in areas that take so much more work for Ella? Would I feel resentment toward him for living life so easily when it was so hard for her? Would I love her more because I had to fight harder for her? Or would I bond more closely with him because I didn't have to muddle my way through the intense emotions of grief while caring for a newborn? Would I feel more frustrated with Ella as I realized what she 'should' be doing instead of being content with the stage she is in? How would I feel as Hudson, even though he is 2 1/2 years younger, eventually passed Ella up both physically and developmentally?

Hudson is now 7 weeks old. At his one month appointment he had gained over 3 pounds. It took Ella twice as long to gain that much weight. At one month Hudson already weighed close to 12 pounds.  How long did it take Ella to reach 12 pounds? Six months. Hudson is cruising up the ranks of diaper sizes at an astonishing speed. Ella has been stuck in the same size for years. At Hudson's age, Ella had already spent half of her life in the hospital, had an exciting ambulance and emergency middle-of-the-night airplane ride, and was formally acquainted with an entire team of medical professionals. Hudson has barely seen the inside of our family clinic.

Yes, it's no surprise that Ella and Hudson are different. They look different, act different, and are developing differently. But I see now that I had nothing to fear. My love for all my children is equally intense, yet equally differing as well. It makes no difference to me if Hudson walks at 10 months while it took Ella almost 29 months. Or if he catches up to her in size and effortlessly reaches her hard-earned 20 pound mark in a fifth of the time it took her. It doesn't mater when he talks, what he looks like, or what his differing talents and characteristics are. There just is no comparing Ella to Hudson. Or Ella to Nolan. Or Nolan to Charlie. Or Charlie to Hudson. Or any child to any child. Every child is so differently and uniquely created with their own individual sets of strengths and weaknesses-every single one-that there just is no comparing. And why would we want to compare our children to some kind of cookie-cutter mold of who they "should" be. Albert Einstein is quoted as saying "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

I feel so much more appreciation for life since I am not wasting my energy comparing my child to others. I feel so much more freedom in the ability to love my children for who they are instead of trying to fit them into some mold of what they "should" be like that they will just never fit into. And now when I hold Ella tight, rocking back and forth whispering "It's all right.. it's all right," over and over again, I really know deep in my heart that it's true. It really is all right.


  1. All children are unique--just like everyone else. :-)

  2. Great post, I so enjoy reading everything you write. wish there had been some pictures of your ADORABLE kids tho' ;o)

  3. Beautiful post! Again, I swear your posts make me a better OT, so thank you for that!