A new outlook on life

cI always knew I would have unconditional love for my kids. I had this vision of what my family would look like and things they would do- soccer, gymnastics, dance. Never in my imagination did I consider the possibility of having a child with special needs.

Two years after my husband and I were married, we decided to start our family. There was no way I could wait until birth to find out if we were having a boy or a girl! My husband’s family is full of boys; we just assumed we would have a “Tommy” or “Charlie.” The ultrasound at 18 weeks left us in shock- first, “It’s a girl!” followed by “Your baby has Spina Bifida.” How was this even possible? Our baby was supposed to be perfect! Over the next 4 months, my life became a whirl of doctors, ultrasounds (more than 20) and appointment after appointment. My dream of the perfect family was gone, and I grieved the loss of that dream. What would our lives look like now?

Birth was a blur. Charlotte was whisked away to the NICU before I could hold her, kiss her- even touch her. She had her first surgery at only 23-hours-old, followed by a second surgery 3 days later. We were finally able to hold her when she was 6 days old.

Charlotte is now 3 1/2. She has had 15 surgeries so far and has spent more time in the hospital than I care to remember. In the face of this new reality, my definition of “perfect” has changed. I am determined that our family will live life the best way we can. I want to choose to see our glass as half full, not half empty. Here are some lessons I’m learning.

  1. Look at life’s challenges as gifts and be thankful. I’m realizing everything I experience- even the hardest- has the potential to produce something good. Sometimes I find myself focusing on what Charlotte can’t do instead of fully appreciating what she can do. I need to reframe “she didn’t start crawling until she was 2” into “she can crawl!” Almost 4, Charlotte is using a walker. Her face lights up when she realizes she can do new things!
  2. Take life one day at a time. There is no way that I can live in ‘tomorrow.’ I have no idea what tomorrow will hold. Will we be rushing to the ER? Will there be another surgery? I live in the ‘right now’ because it’s all I am guaranteed. To be present in the moment is to fully engage with my children, to celebrate the smallest accomplishment, to stop to play tea party instead of walking past the party to make dinner.
  3. Accept help from others. This is a hard one. In January, Charlotte was in the pediatric ICU for 17 days. During that time, she had 4 surgeries, I was nursing a 5-month-old, and we were scheduled to move. My first response when friends offered to bring meals and pack and move boxes was, “I think we’re good.” When I finally swallowed my pride and asked for help, I couldn’t believe the support we got from so many people!char
  4. Don’t view disability as a burden. On a daily basis, there are a lot of extra things I need to do for Charlotte. I can’t live life getting annoyed every time she needs something she can’t reach or helping her stand to play in her kitchen. Life is too short (see #2!). Her physical challenges and needs are making me stronger and wiser and kinder (see #1!).
  5. Discover and embrace a new ‘normal.’ Charlotte is a normal 3-year-old who plays with toys and acts silly and melts down when she doesn’t get what she wants. The last thing I want is for her to feel she can’t do the same things as other kids. It’s up to me to adapt activities so that she can participate when she can, to sometimes watch from the sidelines, and to help her discover her talents and skills and where she will excel. I have to shift my focus from what we don’t have to what we do have, from what she can’t do to what she can.

Life isn’t quite what I had always imagined. My definitions of ‘perfect’ and ‘normal’ have changed. The joy I see in her is what makes me thankful for her every single day!

Jamie Lacey
Jamie married her high school sweetheart in June 2007. Originally from Iowa, they moved out east for a few years, but couldn’t wait to get back to the Midwest! She's a hairstylist turned stay-at-home-mom to their daughters, 5-year-old Charlotte, 2-year-old Emma and baby Hazel. If you run into Jamie around town, you're sure to find her girls in matching outfits from head to toe! During naptime, she enjoys searching for her next DIY project on Pinterest. She has an unhealthy obsession for ice cream, chocolate, and candy! Shopping, date nights, discovering new local restaurants, baking, party planning, road trips, and spending time with friends and family are just a few things that Jamie loves to do!


  1. Jamie:

    thank you for your beautiful story! Danielle Spencer is my daughter who is another one of writers for the Madison Mom’s blog. I am so much enjoying the writings. Danielle’s sister, my youngest daughter, passed away 2 years ago and like you she gave birth to a special needs child with Angleman’s syndrome. He is 8 years old and our blessing. May God bless you and your sweet family. You are an encouragement to me and other people with children with special needs.

  2. Jamie,
    What a beautiful and inspirational essay! Anyone having a bad day should read this and thank you for being able to put things into perspective. And any parent of a child with special needs would benefit from reading this. Charlotte is very lucky to have you as her mother. And my daughter, Alisa, and her little Ava are very fortunate to have you and Charlotte and Emma in their lives.

  3. So enjoyed your post. Now a grandparent…I haven’t walked in your shoes so can’t know exactly how your day to day life is but your attitude and philosophy are so inspiring . Charlotte is lucky to have you for her mom. My daughter is Laura C which is how I got started reading Madison Moms Blog. Love to witness such dynamic young women raising their families!
    Sincerely, Joan M


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