We just lived through a crisis. So far, it has been my biggest crisis to date. Twice, I watched Reese in respiratory failure, struggling with all her might to breathe, before the doctors pushed a 5 cm tube down her throat to save her life. I sat shaking and praying, wondering if I would hear them tell me she was gone. The first time I was as scared as I have ever been. My mind raced...what would I do without her? What would our lives be like after this? How will we tell the girls? And how will this affect the rest of their lives? I pleaded with God...I was so confused. I was sure she was going to get better and now she was slipping away. The neurologist-on-call sat us down and said, "Reese is very very sick. I am not saying this is the end, but it may be the progression of her disease." Pain and fear gripped me. When the team of doctors and nurses backed away from Reese and she appeared to be breathing comfortably on the ventilator, I remember thinking we had been granted a second chance. Relief...thankfulness. Little did I know, when they would remove the tube days later, she would enter respiratory failure again. But this time I would be ready.
A friend of my mom's had sent a beautiful prayer, referencing Mark chapter 5, in which two parents were mourning because they had lost their daughter. Jesus entered the room where the family was crying and he told them that she was not dead. They looked at Him like he was crazy and then He told them, "Do not fear, just believe." And he then told the girl to get up and she did. As I read this passage the morning before Reese's second extubation, I felt God's peace come over me. I new God had given me my verse for the day, "Do not fear, just believe." Mario and I repeated it to one another through the whole process and the peace that overwhelmed me was remarkable. This time, the extubation was successful and Reese started breathing on her own.
As I reflected on the dichotomy between the two days, I realized...fear is a natural response to my child being in distress. The fear of losing a child must be the greatest fear of any mother, and I know every mother would understand being overcome by fear in such a situation. But God was teaching me...yes, it is natural, but it is not necessary for a Child of God. He offers peace, a peace that surpasses understanding, even in the scariest of times. He gave me that peace and the difference was remarkable. I knew He was healing Reese, I knew He had more planned for her, and I knew He was carrying this load for me. It was awesome.
I recently read that Max Lucado said, “Crisis doesn’t develop character; crisis reveals character.” Hmmmm... I actually believe crisis develops and reveals character. And I would add to that. I believe crisis reveals character in those going through the crisis and in those watching. I have been blessed to watch the most beautiful character in friends and family who jumped into our crisis, without hesitation, without first checking their schedules, without measuring their burden, without criticizing or judging, and in loving, sacrificial, heartfelt ways, loved us. We were blessed to be on the receiving end of that. It has taught me...that is the kind of person I want to be. In the mess, at the doorstep, on the phone, in your face, letting you know I am there.
You know who else is awesome? Mario. The unsung hero. In case you don't know it, I have an awesome husband. He is always positive, always strong, and always has his eyes on the ONE who has the whole situation under control. He never faltered in taking care of 3 girls on his own. He got them fed, got their homework done, got them to school with lunches, and even did his own version of housework for 16 days. And he never complained. He was just there...with my coffee every morning...with a smile and his, "It's gonna be a great day! Smile!" Even when I didn't want it. Love you even more.
Reese is home and on the mend. We are so grateful to Jesus for healing her and for allowing us another day. On the day that we brought Reese home, her Aicardi sister Maddie entered the PICU in Michigan and never came out. Her mom had to make the heartbreaking decision to remove the ventilator after Maddie would not breathe on her own. Maddie's mommy had to say goodbye after 11 years. My heart has been breaking for the last few days. All of the moms of girls with AS share a few things in common. One is...we know that bond that we all share with our girls. It is something that cannot be described in words. It is deep and it is real. The kind of bond that comes from fighting battles together, lots of battles, and making it through. Loving deeper and wider and eternally. And we also share the understanding that, one day, we all may face the decision that Maddie's mom faced. And it hurts really bad. So please pray for her family and the whole AS family who is hurting together today.
"Come unto me, all who are weary, and I will give you rest." --Jesus