I hung up the phone and fought back tears. I just heard from the customer service rep at FedEx that Ashton’s growth hormone medication would be delayed again. It was grounded in Indianapolis due to mechanical failure on the plane. I had made countless phone calls and had been trying to get his meds for over two weeks. He had already missed two doses and now the arrival date could be three days away. Things did not look hopeful! And I couldn’t cry because I was in the bathroom putting on make-up for a video interview I was about to do for the Free 3 Business Expo coming up in February.
And then it hit me. This scene was all too familiar. It had been nearly 3 years exactly since Ashton was diagnosed with Noonan Syndrome. I stood at this exact same sink, applying my make-up when I received the call from Dr. Ganan Soto herself. You know when the doctor calls you directly, it is something serious.
“Amy, I just want to let you know we received the results of Ashton’s genetic test. It is just like we suspected, he has Noonan Syndrome. The good news is he has PTPN11, the mild form and his body will respond well to growth hormone. . ."
A tidal wave of emotion washed over me. I fought back tears as I tried to focus on what she was saying. Her voice almost trailed off as a million questions went through my mind. I swallowed the lump in my throat. I laid my make-up brush on the sink and closed the door. I carried on the conversation and willed myself to be strong. I hung up the phone and looked in the mirror. You need to pull it together to make this video. You told your agent you would have it to her by the end of the day. Stay strong Amy, you need this job. You need all the work you can get to help pay for his medical bills.
And so I finished my primping and gave Eric a quick call to share the news. I thought of how I wanted to bless my son and my family. I said a prayer and used that as my motivation to find the energy and the strength to make the video and send it off to my agent and then I cried.
And then I reached out. First to one of my besties, Judi and then to my friends that were already praying. And in the midst of receiving some of the hardest news of my life, I leaned into God and I leaned on friends.
There is power in community! We all need others to lean on during the trials and challenges of life. Even as I heard about the tragic loss of Kobe Bryant and his daughter as well as the others who died in the helicopter crash recently, I am reminded how short life is and how we are not guaranteed tomorrow. I am thankful for the supportive community God has blessed our family with these past couple of years. And that is one reason I haven’t taken down all the cards and pictures yet from Christmas. They serve as a visual reminder that we are surrounded by people who love and support us.
My hope and prayer is that you have a supportive community around you too. And if you don’t, I pray you are able to build community in 2020 and beyond. I pray their love and support gives you strength to carry on.