I wrote these a couple years ago, as two separate blog posts for another blog. They have been a favorite of mine, and I thought I’d share them again here…
The Child You Lose
I’m usually one to think positive, speak positive about our experiences. But with Maura’s birthday looming and thinking of different things to write about this month, this thought popped into my head.
See, there is a level of loss when you discover your child has a special need. Especially if you discover this later than sooner. For us, we didn’t discover Maura had issues until she was fifteen months. I am still a little amazed at how one day we walked into the doctor’s office with a perfectly normal child, and left without her. In her place was this child who needed blood tests for chromosomal disorders. Who had delays and physical markers for genetic issues. It was as if we were handed a changeling. I remember being very angry with our beloved pediatrician, because he pointed out the epicanthal folds around Maura’s eyes. Until he pointed them out, I just thought she had the prettiest blue eyes. After he pointed them out, they were all I could see for a while. Eventually though, I did stop seeing them. But I always remember they are there.
When you have a child, you have dreams of what their future may be like. First steps, first day of school, making friends, growing year by year. Eventually those dreams take you to their high school graduation, college days, wedding days.
When you have a child with special needs, you find yourself giving up on those dreams. One by one, as the delays become more apparent, you give up things. At first it was “Okay, she’s going to have to catch up.” Then it was “Okay, maybe she won’t go to college.” Before we could truly process things, we were letting go of dreams and dealing just day-to-day. It was easier that way.
I used to look at Maura and try to see the child she should have been. The one who walked on time, who talked on time, who chatted my ear off, asking “Why?” four thousand times a day. I’d try to see what she’d be like without the delays that kept her from maturing. What she’d be doing if she was a typical three-four-five year old. I could almost see that child Maura could have become. That child who for the first fifteen months of her life, she was going to be. The one who doctors kept saying she might catch up too.
Then one day, I realized that doctors had stopped saying “She might catch up.” And that child she could have been was barely visible.
Maura’s about to turn seven years old. She should be doing so much. She should be finishing first grade. She should be potty trained and dressing herself and worrying about what some other little girl said on the playground. She could be reading and doing math and telling me how she’s going to be a rock star when she grows up. But she doesn’t do any of that – that child was lost to us the day the doctor said “I want to send you for a blood test….” We were just too naive to realize it at the time.
One day, when Maura was three, I had her with me when I went to see my therapist. She was watching Maura doing her thing, then said to me matter-of-factly “You know she will probably always live with you.” It was the first time anyone dared to say that to me. I answered yes – and realized that I did know that. It was just never addressed before. It was that ugly reality of “your child will never graduate high school, go off to college, get married…no, she will never be independent”. It was something that needed to be brought out into the harsh light and acknowledged. I did, then tucked it back into the closet. I know it’s there. I just don’t need it staring me in the face every day.
More ugly truths had to be addressed. The child Maura was supposed to be was also supposed to be perfectly healthy. With our older three, we rarely saw a pediatrician. Soon we were seeing doctor after specialist. I learned which lab did good blood draws on children and my way around the medical center. Things seemed to mellow out, only for her to have a seizure and start us down a new path. One we’re still trying to figure out.
The way she started kindergarten was also not how it could have been. The biggest drama should have been having the right backpack and lunch box. Instead it was “Can the school even handle her?” We had a meeting with fourteen other people to determine that. We had the same sort of meeting to determine what her first grade year will be like.
In what seems like a very long time ago, I came to the realization that even if I was actually given the choice of keeping Maura the way she was, or being able to wish her into “normal”, I would choose to keep her the way she was. Because at the end of the day, she really is an amazing little creature who is full of joy and happiness. Making her normal might take that away, and it just wasn’t worth the risk. On another special needs blog that I can no longer find, a father wrote how his daughter was the way God wished us all to be – innocent and joyful. I think of Maura that way. I joke that the world would be a much better place if we all had Maura’s attitude towards life. But that doesn’t mean I won’t always be a little haunted by the child she could have been.
I know I’m not alone in this. I think this happens to other parents as they watch their children struggle with a disease or syndrome. We can love our kids, never want to change them, and still wish we could take away the struggle and let them have some normalcy. We see glimpses of the child they could have been. I’m beginning to realize that it will never go away.
The Child You Gain
But with something lost, there is something gained.
Maura was my fourth child and I thought I knew it all. She taught me that I didn’t know it all, that there was much more to be learned. And I’ve learned. Boy, have I learned!
I may have lost the child Maura could have been, but the child she is has been amazing to know. Maura is definitely different. Not just because of her issues, but also because of her attitude and personality. It really is something you sort of have to see for yourself. Those of you lucky enough to know her understand.
Maura is a child who has always been able to smile with her whole face. When she’s happy – which is almost always – she radiates that. She assumes everyone loves her, and because of that, you can’t help but make that assumption true. She takes pure joy out of doing things she loves, like dance class or playing in the pool. She gets excited over the littlest things, like being given a penny, or blowing dandelion puffs. A hug from her makes anyone’s day better.
She reminds you that it’s okay to go slowly, to celebrate the small victories. She is naturally relaxing. As an infant, we would fight to hold her because she could relax you so much, you’d fall right asleep with her. She still has that power sometimes.
Maura may currently have the mind of a three year old, but she’s a three year old that knows her mind. She is picky about her clothes, loves fun shoes, chooses awesome frames every time she gets new glasses. She has her likes and dislikes, whether is food, shows or music. Even for an almost seven year old, she has particular taste in music.
It’s funny – when she was a baby, I noticed her ears were slightly pointy, and I jokingly called her my elfin baby. Even then I guess I could see there was something different about her. Like she’s some magical little creature. Every so often she does get this other-worldly look about her and it makes you desperate to know what goes on in her head.
I also noticed that her look isn’t as mature as other girls her age. I have friends with daughters who are the same age and they look so much older than Maura, even though Maura is bigger than most of them physically. Her face reflects her development. I do believe that Maura will be child-like all her life. She will always have this innocence about her. And how many of us have wished for a certain amount of innocence back? In a way, she is luckier than us.
And she is loved. So very loved. I used to get worried when we’d meet new people, or visit family after they hadn’t seen her in years. Would they accept her? Or would they look down on her? My fears were silly, my Maura charmed just about every single person she met. She’s even charmed people she hasn’t met. And those few people who she didn’t charm? I learned to chalk it up to “their loss”. They obviously weren’t special enough to earn her smile.
I know there are some who think “Oh, you poor thing. There’s something wrong with your child. How awful!” The message I want to send to them is this. It isn’t awful, and your pity is not needed here. Being Maura’s mother has taught me so much, made me realize that I can handle things I never dreamt I could have handle. It is a daily reminder about how lucky I am to have three other wonderful, healthy, compassionate children, and an amazing husband who truly is a great father. It has taught me to appreciate all that does go right for us, that a sense of humor can get me through most things, that there are no guarantees in life so don’t take anything for granted.
Maura wasn’t the child I thought I was supposed to have. But I am so grateful to have been chosen to be her mother.
