May 12th will be the one-year anniversary of my daughter Natalie’s surgery to fuse her spine and correct severe scoliosis caused by a neurological disorder called Neurofibromatosis (NF). As winter has turned to spring my mind has begun to wander to the events leading up to and following that extremely difficult day. With those memories has come residual anxiety and sadness and continued fear of what we may face next. Rather than focus on those difficult emotions I’ve tried instead to reflect on how much I have learned this year.
I learned that I am surrounded by good people. The outpouring of support we received those few weeks around the surgery date was overwhelming. I have never been so popular on Facebook. Within seconds of posting a status about Natalie’s progress my phone would begin to “ding” with notifications of “likes” and comments. During the endless hours of sitting in the hospital I would read every single comment to Natalie boosting her spirit and making her smile. The week we came home from the hospital I didn’t make one meal. Family and friends constantly dropped off food and we ate better than we had in a long time. People showered Natalie with gifts—iTunes gift cards, Amazon gift cards, books, puzzle books, craft supplies, anything that she could do from a sitting position. I will forever be grateful for the support my family received and I will always do my best to reciprocate if needed. I’m surrounded by good people and I will never take that for granted.
I learned that the love my husband has for his children is absolute. Of course, I have always known that my husband loves our children. The love I saw him show Natalie during her ordeal, however, was almost too difficult for me to watch. It took every ounce of my strength to hold myself together and show Natalie my brave, positive, smiling face. Watching my husband try to do the same almost broke me. Many people wanted to sit with us during her surgery and he insisted that it only be the two of us and I am so glad he did. During those eight terrifying hours I was reminded that he is truly my partner in parenting. We stayed strong because we were together. I’ll never forget the love and courage he showed us that day.
I learned that I am brave and strong. I can do hard things. Natalie requested that I go with her into the OR. Sitting next to her while they put her to sleep was the most difficult thing I have ever had to do. At one point she tried to rip the mask off and even though the nurse assured me over and over that it was normal and that she was not conscious of it I began to weep. I wanted to stand up and call the entire thing off. I wanted to scream, “Don’t touch her—NEVER MIND!!”. Once Natalie quieted and fell asleep, the nurse picked me up off of the chair and I was sure my legs would not carry me out of there. But they did. I walked out of the OR, stopped crying, dried my face, and waited until I knew I could smile before I found my husband. Throughout the days following her surgery I only left the hospital a few times to run home, shower, and give some love to my other girls. For the rest of those five days I watched my daughter writhe and cry in pain and I listened to her moan in her sleep. I helped her sit up for the first time, stand for the first time, and walk for the first time. I didn’t cry again and I never let her give up. Her amazing courage, strength, and sheer will kept me going. If she could do this, I could do this and we never quit. I gained confidence as a parent and I gained the courage that I’m sure I will need again on this journey of life.
Most importantly I learned that my daughter is the strongest, bravest person I know. As brave and strong as I believe I am? She’s braver and she’s stronger. From the day we explained to her the details of her condition and surgery until the day she walked out of the surgeon’s office, seven months after surgery, with an “All Clear” note in her hands, my daughter carried herself with maturity, confidence, and courage. Yes, there were many tears along the way. There were moments of anger and many moments of frustration. But she did it. And she knows it. And she ALWAYS knew she could. During the days leading up to the surgery she would talk about her concerns, express her nervousness, and she asked lots of questions. She never cried, though. She never asked if we could cancel. The day of the surgery she was quiet but steady. She held my hand until she fell asleep but she never hesitated while completing the pre-op tasks. She was supposed to spend two nights in ICU, she spent one. She was supposed to walk after three days, she walked at day two. She walked around the unit on day four and scaled a flight of stairs on day five. We were told to expect seven days in the hospital, we were home in five. The nurses and physical therapists were shocked. The surgeon smiled at us, knowingly, and said, “I knew she could do this.”. NF is chronic and there is a chance that Natalie will face other challenges, including more surgery, along life’s path. I know she’ll be OK. I know she can fight.
So we are going to celebrate on May 12th. We are ready to bring on a new spring and summer. Natalie is ready to get moving again. Her first soccer practice of the new season is this week and she is more than ready. It’s time to let go of the residual stress and embrace the happiness. We did it. We can do it again.