A new outlook on life

I 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!
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!