I began a season of mourning for Noel in March of this year. I mean deep down gut wrenching mourning. It began after another sleepless night because of the severe pain Noel was experiencing. Her stomach was aching, she was nauseous and she couldn't sleep. So many of her nights are this way; simply put her stomach doesn't work and the doctors don't know why. I went to Google because that's where I have earned my "nursing license" to be able to care for Noel; when I don't know or understand something I Google it. Of course it was about one in the morning; isn't that the best time to learn? I started researching Myotubular Myopathy. Up until October of 2010 I had always been told that Noel's diagnosis was Congenital Muscular Dystrophy. At Noel's October muscle Clinic appointment a new Doctor saw her and said that she looked like she had the characteristics of Myotubular Myopathy. I stored that away in my brain but didn't think too much about it until that night in March. I thought maybe she does have Myotubular Myopathy and maybe that will explain why her stomach doesn't work. So I started researching; first I found a support group for kids with this condition, as I looked at pictures of two little boys I was convinced, they could have been brother and sister with how similar they looked. So I dug deeper and instead of finding a link between this disease and her stomach, I found that these kids with this disease don't live very long. Every story I could find or blog I went to ended very sadly; most the kiddos didn't live past 6 or 7. What? Could that really be? I always knew Noel's life might be shorter than most… but only to live until she's 6 or 7? My other daughter Lily would be turning 6 in April… That just wasn't enough time. At this point Noel's health wasn't very good; she was struggling to gain weight, to eat through her stomach, she wasn't constantly in discomfort and pain, she slept on a ventilator. I could imagine her being one of the kids who only made it to 6 or 7. I began to cry, to sob, to ach for my little girl. When I couldn't read anymore I crawled into the bed next to her and I mourned. I mourned the unknown, the possible, the "what if's." But that was only the beginning of the season. I didn't wake up in the morning feeling better, I woke up in the morning still mourning. I didn't know what to do with this feeling? I felt as though not many people would understand. I thought people would think I was supposed to believe in healing, that she will be restored, that she will BE HEALED. And I believe it to my core that Noel will be healed but what if it doesn't happen until she's with Jesus? It's something I understand but I was worried no one else would. I walked around heavy, full of emotion; I would cry and weep in the shower when I was alone. I would hold Noel so close, many nights I would go in her room crawl in her bed hold her and weep. Very slowly this new feeling brought me to a new place of vulnerability. Slowly I opened up to friends; I let them into what I was carrying. I invited them into the deepest places of my mother's heart; I allowed them to see what life was like for me. And slowly as I opened up during my season of mourning I began to receive comfort. I started to get help. Help with things as simple as help with laundry, as wonderful as a home cooked meal brought to us, and as deep as a prayer circle crying out for me, for Noel and for my family. And since then it's continued; the comfort has continued. During this last hospitalization with Noel I went to such a deep place with God. I was lying next to Noel in her hospital bed; she had looked horrible that day as sick as I've ever seen her. I awoke that night to the terrible sounds of her lungs. In those quite moments alone, when there was no nurse or doctor in the room, when it was just Noel, me and God I gave her to Him. I asked Him is this her time? Is she going to make it until the morning? Is this the day I leave the hospital without her? And in the depths of that place, in the midst of the deepest mourning I've ever experienced I was comforted. The presence of the Lord in that moment was so thick. I knew that He was there to comfort me, that no matter what the morning brought He would be there with me. That if I left the hospital without Noel I wouldn't leave alone, I would leave being carried in His arms. As you know that wasn't the morning I had to leave Noel, I know that the time may come but I know that no matter when that time is I will be comforted because the Bible says in Matthew 5:4 "Blessed are those who mourn, for they will be comforted." I also know because I walk every day carried by that comfort.
Here's a link to a great message preached on this verse: Blessed are those who Mourn