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Dear Elizabeth’s Mom

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Dear Elizabeth's Mom

Thirteen 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 almost 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 13 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 special needs 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.

 

Comments

  2. Lisa Weinstein says

    Kathy – I have always believed that there is nothing stronger than a mother’s instict, her gut feeling about her children. There have been so many times when raising Melissa when Bob asked me why I made a specific decision, and oftentimes I couldn’t even put my rationale into words. It was just overwhelming mommy instinct. Good for you for listening to your gut, and continuing to do so. I enjoy reading about “Pricess Lizzy” Please wish her a happy birthday from me!! By the way, in an unrelated note, have you heard able something called teh ABLE Act? It was just passed into law and it allows parents of children with special needs to set up tax-free savings accounts to save for their child’s future care. It’s similar to the 529 savings accounts used to save for a college education. Here’s a link to a story about it: http://www.bostonglobe.com/opinion/2015/01/02/the-able-act-finally-allows-savings-for-people-with-disabilities/q60mNy4MMazxG2omrXGUWO/story.html

  3. KymberlyFunFit says

    I know others who experienced the distancing from close relatives when their baby was born with major issues. You are wise to see it as the non-parents’ way to corral their own feelings. My own sister went through a lot of what you list here. She was a lonely, yet vigilant and correct voice in a special needs’ wilderness early on when her son did not hit usual milestones. Glad you “posted” your letter!
    KymberlyFunFit recently posted…Fitness, Weight Loss, and Nutrition in 2015: Get More Sizzle, Less FizzleMy Profile

  6. Andrea Brovetti says

    Beautiful Post Kathy. Lizzy has brought such joy to you and to us ! Happy birthday Liz I can’t believe you will be 13! Love Grandma and Grandpa

  9. Parri (Her Royal Thighness) says

    You never cease to astound me …the way you can take whatever challenges life throws your way and articulate them into a piece that is beautifully written, intuitive and inspiring. Parenting is challenging for everyone in different ways. When I read your blog, I always feel like it centers me and brings me back to focusing on what’s really important. Your words always touch me … and remind me to embrace the positive.

  10. Kerri says

    This is simply, gorgeously beautiful. Every mom should read this and so should every child. To know that they are doing the best they can, to know that it is okay to scream and to shout with joy. I simply love the line of not allowing them to be a brat. I say this all the time, Bridget might have issues but that doesn’t mean she can be a brat!
    Kerri recently posted…My Challenge: ADHDMy Profile

    • Kathy Radigan says

      Kerri it’s so true isn’t it? They are so cute, and they try so hard, it’s easy to let some things slide, but I’m not being fair to Lizzy if I let her become a brat!! Lots of love to you! xo

  15. Sheila Qualls says

    I have a niece who is a pediatrician and a daughter who suffered a head trauma as a child. My daughter is now 22, but it has been a long and hard road. We still have miles to go. After years of being dismissed by doctors and therapists, I advised my niece before she entered med school to always listen to the mom because the mom knows. Your letter is beautiful. I wish I had read it years ago.

Much thanks to Joseph Radigan, who besides being a great husband and father, also uses his talents to gently and ever so tactfully edit my blog. Joe is a business editor at Thomson Reuters in NY.
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