Time flies. In reference to me not posting for nearly three weeks already, and also in noting that my baby girl Ella is almost 2 already!!!! On Christmas Eve, she will be a whopping 2 years old, and it seems like just a few days ago that she was so tiny and fragile. A lot has transpired in 2 years. There have been many events, milestones, and changes. One of the biggest changes has been my heart. If you would have asked me 3 years ago what my life would be like in several years, I would have painted a different picture than the one that is currently being created. But that's the crazy thing about how God works. He takes the unexpected, even the painful, and, if we let Him, He creates an intricate, awe-inspiring masterpiece of His own design.
Those three words: "His own design." Those three words are sometimes hard to swallow for a type A personality such as myself. I lean towards control. Everything neat and tidy; everything done a certain way. The most recently-washed towels go on the bottom of the pile so as not to just keep using the same ones over and over (I thought this was normal until my husband laughed at me). You buy an extra toiletry item and put it in the drawer so that when you run out, you always have one on hand. You empty out your car as you walk into the house so things don't pile up in there and get cluttered. Control. My own level of perfection. A place for everything and everything in it's place. Now, if you've been to my house in the last year, you can surely say that's not always true of me, but it definitely is my leaning, and if I had my way, it would ALWAYS be that way. (Being married to a man who isn't as concerned about which towels we use in what order has led me to relax my standards a little. But just a little. haha)
And my ideas about my children and my future family were much the same as my bent for order and control. A beautifully kept home with 2 (maybe 3?) very well-behaved children. These children would surely be the best, the brightest, and the first in everything. I am a teacher after all. My children would grow up excelling in school, getting into a great college, and doing an amazing life's work following God. They would marry the most wonderful people, and thrive in every area of their life. In other words, they would be "perfect". In my mind, I thought that these were the things that would make my children "special".
Now I never said these things out loud to anyone, and I'm not even sure if I was consciously aware of my mindset, but it was there. I discovered it was there when Ella was born. Because as soon as I realized that some of those things might not be a reality for Ella, I was heartbroken. I can say that I am truly saddened by how selfish and prejudiced my thoughts were towards her when it all came crashing down, but I did think those thoughts. And the reality of it all hit me like a ton of bricks. How well will she function? When will she talk? Will she and Isaac even be able to play together? Will I have an adult child living with me forever? Will she get married? We won't ever get to walk her down the aisle. What will people think of us? They will think that we can't even make a "perfect" baby (all I could think about was how everyone says in their baby announcements. Baby is perfect! I didn't feel that way about Ella.) I would see other people with children that they weren't expecting to have or even necessarily wanting to have and think, "Why do they get to have a "perfect" child (or even two) and here we are, the most loving and devoted people who desperately wanted a second baby and we got gypped? I burst into tears trying to give Isaac the doll I bought for him to play with so he could have a "baby" too. When I looked at the clothes I had spent months picking out, buying and washing, I felt as if they didn't "go" with her. What about all the health problems? Will her heart ever be healed? Will she get leukemia? (children with Down Syndrome are more susceptible to it).
And on and on the list of negative and nagging thoughts went. When I looked at her, honestly, all I could see was the Down Syndrome. It pained me to see pictures of her. (How awful, I know!) I would just see her eyes. Those blue eyes that I have come to so adore. Those precious, twinkly, mischievous almond-shaped eyes that crinkle up so tight when she smiles you can hardly see them. But in the beginning, they brought me pain. They reminded me of all the things that might not be. Her hospital discharge picture that they put on the website made me cry. I remember saying to my sister-in-law as we were scrubbing into the NICU one day, "Life just got a whole lot more complicated." And that was the polite version of what I was really thinking. While in the hospital, I vacillated between extreme pain and remorse for the "death" of the child I thought I was going to have, the one I was supposed to have, and so much guilt for even thinking those thoughts while my tiny little baby was lying in an incubator, needing oxygen to stay alive.
What made matters worse was that once they put the IV and the nasal canula in, we weren't able to hold her. So I would just sit in my hospital room, pacing, feeling like I didn't really have a baby. I had given her to the nursery that first night thinking I would get her back in a few short hours, not that she would be isolated from us for days. I'd go to be with her, and those feelings would fade, but I couldn't ever rid myself of them completely because I wasn't able to snuggle her close, to feel her warm little breaths on my cheek. I couldn't smother her with kisses and nurse her. I hadn't even called my friends to tell them yet because I just didn't know what to say. I wanted to post it on facebook like many people do, but I didn't know how to put into words the fact that she had Down Syndrome without giving away my inner angst. I did finally call a few of my closest friends on Christmas day (balling, of course), and they were a source of great encouragement to me. I also received a word of knowledge and encouragement from my friend's sister-in-law that broke my heart and began healing it all at the same time. And then, finally, we got to hold our bundle again. On Christmas day in the evening, I finally got to smell her sweet little baby smell and snuggle her close. Close enough to hear her breathe. And that night God helped me take a breath too. The kind of breath you take when you are going under water and you don't know when you'll come back up. Up until this point, I felt as if I was drowning. I didn't even want to be in the pool. I was gasping for air, trying to get out, just trying to grab the edge of the pool, anything, but God was asking me to take a deep breath and go into the deep end. He was trying to teach me to swim. And when I finally held Ella, I at least agreed to be in the pool. Not that I didn't struggle and flail against Him for the next several months, but slowly, ever so slowly, I began to watch God do a masterful dance in the water and start to take his lead. My strokes were clumsy and choppy at first, but as I let God carry me through the water, this unknown, sometimes terrifying water, I learned a lot about who He is and what He wants me to be too.
You see, the issue was not with Ella. It was with me. My perception of "perfect" didn't line up with God's. My concept of perfect was when things were under my control, with everything going my way, exactly as I had planned. My idea of a "special" person, even though I didn't know it, was a person who had strong abilities, one who would excel in this world. A person who would meet my expectations that were so worldly: talented, educated, self-sufficient. But now I know that "perfect" is not defined by the world's standards. Even though Ella will walk a different path than I originally thought or even hoped for my daughter, she will be good at all the things that really matter most. Like loving others and enjoying life to the fullest. She is perfectly made, in God's image, just like every person ever created. Her value is not in the grades she will get, the job she will have, or the talents she will acquire. She is valuable because of who she is, just as she is, shining the love of God so brightly to a desperate world. Now that's an important calling!
