My dishwasher's possessed

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I Became an Adult the Day I Realized My Daughter Has Special Needs

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I Became an Adult the Day I Realized My Daughter Has Special NeedsIf adulthood is defined as being completely self-supporting and living on one’s own, then I achieved that milestone when I was 23. If it is defined by getting married, having a child, or paying a mortgage, I crossed those off my list at 27, 33, and 35, respectively.

But looking back, I now know I became a card-carrying member of the grown-up set the morning I looked down at my gorgeous second child, who was only six weeks old, and was struck with the overwhelming feeling that there was something profoundly wrong with her. Yes, I became an adult at 36, the day I knew in my heart that my daughter had significant special needs.

That was the beginning of many, many visits to a host of specialists, therapists and teachers. Countless appointments that started with, “I don’t think it’s anything serious,” and ended with, “Something does seem to be very wrong.” So many invasive tests and procedures that suggested syndromes and diseases that were life-threatening only to have other tests contradict them. Five MRIs that showed significant brain damage but not one doctor that could tell us what it all meant.

Through it all I had a little girl who needed me to make it better. Yet, I couldn’t. Despite countless professionals reassuring me that she would eventually be OK, she wasn’t.

I have never felt more like an adult. My husband and I were responsible for this little girl. Her future depended on us. The fear that we would screw up was overwhelming at times.

The way I sometimes describe Lizzy’s condition is to compare her to an amazing computer that has all the bells and whistles you could want. Yet each time you turn it on, you get another result. Some days it never turns on. Other days it turns on but gives you information that makes no sense. Then there are the days it may work perfectly for an hour or two and shows you just what an amazing machine it is, only to stop working again.

Before we had Lizzy I believed that doctors, therapists and teachers would always have the answers, and if they didn’t, all I had to do was look harder to find one who did. I lived under the delusion that all I needed was good insurance, a supportive family, and a husband who was willing to work as hard as I was, and we would not only find out what was wrong with our sweet girl, we could actually “fix” her.

My friends and family would tell me that I was doing everything I could, but how can that be true when I was unable to help her? My husband and I started to wrap our family in a cocoon. We stopped sharing the more difficult aspects of Lizzy’s issues with our loved ones. I couldn’t take any more looks of pity or comments that I was a saint.

And I was angry. I had always been able to solve any problem that came my way, why couldn’t I do it now when it mattered the most?

I began to realize that my belief that I could always find an answer and a solution came from a place of privilege. One only needs to watch the news or read the paper to see that difficult, horrible things happen to people everyday. Why did I think I was immune? What made me so special?

Whenever I have a pang of the “why me’s,” I focus on everything I do have and think about the families who are dealing with everything that we are and more. Many doing it without the resources and support we are lucky enough to have.

I stopped being consumed with finding the reason behind her condition and started to look for ways to manage it. We were very fortunate to find a doctor who was able to find the right combination of medicines that allow for Lizzy to be able to go to school and sit through a meal with her family. Today she attends a school for children with special needs and is a happy 14-year-old girl who loves princesses, cheerleading, art, and music.

Today I see all that we have gone through, and will most likely continue to go through as on odd blessing. I am a much stronger, more understanding adult than I would have ever been if I wasn’t the mom of a special princess.

 

This piece was first published on She Knows under the title, I Knew I Was an Adult When: I found out my daughter has special needs, October 28, 2015. It is the  first time it has appeared on the Dishwasher.

Comments

  2. Cathy says

    Wow this could have been me. Our second daughter had many special needs. The array of doctors was mind blowing. It felt like a thousand doors were slammed in our faces It took 4 years to get a diagnosis. It took many more to accept the limits of success. The most important thing is that I had a happy child to whom every day was a new one filled with joy.

    • Kathy Radigan says

      Thank you so much Kate!!!!!! She is a trip. I don’t know what I would do without her or my boys! xo I loved getting a chance to really get to know you at BlogU!!!

  6. sheila qualls says

    Kathy,

    I SO understand this story and every emotion you described. You feel like, if I am not her advocate, who will be? It is a huge responsibility. And, I, too, learned that doc do NOT have all the answers. I guess that’s why they call it “practicing” medicine. There are no absolutes. You have inspired me to write a post about our own experience.

    But, I am sure you agree that you wouldn’t trade her for anything. (And, I have been humming her version of Do You Want to Build a Snowman. That story is hilarious!).
    sheila qualls recently posted…Comment on 7 Reasons Why Letters Make Great Gifts by Sheila QuallsMy Profile

  7. Dani says

    The things that remind us how powerless we are, are the things that end up being the greatest teachers. Very powerful post!

  8. JILL says

    I always love reading Lizzy stories. One of my kids is medically complex and if our first few months with him didn’t snap me into grownup land, there is no hope for me.

    So yes, I get it.

    • Kathy Radigan says

      Thank you so much Jill!! Yes, there is nothing like having a child who has needs out of the ordinary to snap us into the grown up world!! Darn it! Lol! xo

  11. Laurie Stone says

    Wow, what a beautiful post. I have a son with special needs and yes, you feel like you’ve graduated to a different level of parenting. Like you, we have good days and bad, but the love is always there. Maybe that’s most important. Thank you for this reminder.
    Laurie Stone recently posted…What Makes an Awesome Dad?My Profile

  12. Eli@CoachDaddy says

    I love the computer analogy. So complex, so perplexing, yet so beautiful. I consider you both lucky. I feel like two events forced me to become a grownup: My father’s death, and my second daughter’s diagnosis with a peanut allergy. Totally manageable, the second, and we’ve done a fabulous job.

    Those first days though? The unknown? The dreams? Yeah, this parenting thing is a trip, isn’t it?

    Beautifully said, as always, Kathy.

  13. laura {not a trophy wife} says

    I think I have followed you for several years, but I am holed away in my room with my boys watching basketball… I think it was basketball… watching MTM re-runs that I DVR’d after her death. And, I am found your posts about Lizzie. No words just a note to say… you make a difference with your words… xo from Denver laura

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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