Sixteen years ago a little baby girl with a head full of thick black hair made her way into the world. She screamed so loud that when we told the doctor her name, he looked up and said, “Elizabeth is too demure a name for such a noisy little girl.”
Six weeks later I was cuddling my daughter when I looked down at her and experienced a panic that I’d never had before or since. It was electric and started in my heart and traveled down to the pit of my stomach. She wasn’t meeting my eyes. That was all. Yet I knew in that moment that something was horribly wrong with my beautiful, otherwise perfect daughter.
Our life changed that day.
I’ve often wished that the mother I am today could go back and talk to the terrified woman I was then. This is the letter I wish I could have found that day:
Dear Elizabeth’s mom,
Your instincts are right. There’s something wrong with your beautiful daughter. Many, many people will try to convince you that you’re just a nervous mother, or that you need medication to calm down and enjoy your family. Doctors will tell you that they see what you see, but they don’t think it means much.
You’ll go to so many doctors and specialists to get a diagnosis and find a way to help her. You may never get the answers you want or need. Believe it or not, you will still be able to help her.
Always trust your gut. If you think something is wrong, it probably is.
Be grateful that you married a man who listens to you and never doubts your feelings for a minute. His help will be invaluable because there will be days when you are the only two people in the world who know your daughter has something horribly wrong with her.
You’ll have the incredible good fortune to meet and work with amazing teachers and therapists who help Lizzy make strides others thought impossible and help you become a better mother to not only her, but to your other children as well.
Their input will become invaluable because there will be times when doctors and professionals will tell you things that don’t make sense or you don’t believe. You’ll need people you trust to tell you when to ignore a prognosis and when you need to face the reality of the situation.
People who you expect to be there for you may disappoint you. Remember that your friends and family only want the best for you and your children. They may not be able to accept that something so difficult is happening to a person they know and love. It may be easier to distance themselves from you.
Please know that they may not be the only ones who are changing. You are too. Everyday problems and concerns start to seem trivial now. You may not always be nice to be around. Give yourself time. And make sure you have someone to talk to. You’re going to need friends who have walked a similar path. You may also need a professional who’s there in times of need.
Don’t always assume that people who are staring at you or your daughter mean you harm. You will be amazed at just how kind people can be. And how understanding. Yes, there will be insensitive people. But there are far more people who will show you amazing kindness. You will get to see the best of the human spirit.
Give your other kids time to be alone with you and Joe. Allow them to express their feelings and fears. Enjoy the family you become.
Elizabeth is a unique, amazing child. She has a path and a mind of her own. Watching her grow and learn will really make you feel as if you are witnessing a miracle. It will also drive you crazy. It’s all OK.
Plan for the future, but don’t get ahead of yourself. And don’t assume anything. Elizabeth is doing things at 16 that few thought she would be able to do. No one knows what the future will hold.
Expect to get mad at her. You’re not a saint, neither is she. Thank God. She will fight with her brothers, sneak into the fridge and find all the hiding places for cookies and candy. She will make messes of biblical proportions. Cry when you need to, laugh whenever you can. Marvel at how she does the things she does. Get mad at her when it’s called for. It’s good for her.
Whenever you can treat her like a typical kid, do it. Don’t be afraid to be hard on her. Nobody likes a brat, whether they have speech and cognitive delays or not.
Remember it was never her job to be the dream child you expected. Children are their own people, whatever their challenges are. Give her the freedom to be the Elizabeth she’s meant to be. And give yourself the permission to be the family you’re meant to be. Don’t torture yourself with “What if” questions. They’re not helpful and won’t bring you where you need to go.
You’ll be amazed at the family you and Joe create.
This piece was first published on Kathy's site, My Dishwasher's Possessed! Check out her new project, Every Family's Got One (a story that is)
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