I’m Sarah Stewart, and this is how I’m Living Deeply.
“We started the grieving process when we received Mary Mitchell’s diagnosis, which was two and a half years ago. So it wasn’t like when she died last October, that was the beginning for us. Her disease was a very cruel disease. It’s known as Childhood Alzheimer’s. She wasn’t diagnosed until she was three. So we were completely shocked when we found out her diagnosis -that there was no treatment and it was terminal- because she seemed healthy. We had been told she had a sensory processing disorder. She had some speech delays. But she met all of her milestones until she was three. Right before she turned three, when we started her in preschool, we knew something was going on. At three, children really start to develop and their speech becomes more understandable. And those things were not clicking. I remember going one day to pick her up and I saw, on the outside of the classroom, all the little children had drawn smiley faces: two eyes, a nose and a mouth. I remember looking at them and seeing Mary Mitchell’s. I had tears in my eyes afterward. It was not a smiley face. There were no eyes, there was no nose, no mouth. Eventually we did genetic testing and that was how we got her diagnosis. I found out over the phone. I’ll never forget sitting on the floor of my room after I got off the phone with the geneticist. I remember just crumbling and weeping and crying out to God. Over the course of a year and a half, from the time of her diagnosis to when she went to be with Jesus, we watched her lose all of her abilities. Cognitively she faded away. She lost the ability to speak. At the end, she didn’t know who we were. It was and it is the unimaginable. But even in the darkest moments, the Lord was near, and I didn’t really understand what that meant prior to the past two and a half years. In that moment, when it hits the fan, it’s like the rubber meeting the road. And my hope and my trust in Jesus that I have claimed I had since I was four years old, it’s like, ‘Okay, do I really believe this? Is this real?’
One month I said to our family counselor, ‘I’m mad, but I’m not mad at God.’ I really wanted to make that clear. But then the Lord made me realize, ‘Yes, if I’m going to be completely honest, I do feel angry at God.’ One of the things I’ve learned is that God can handle whatever my emotions are. He already knows what they are and He wants me to feel the feelings and to be honest with Him. I grew up thinking that wasn’t okay, not knowing that would be a healthy thing. We’ve shared Mary Mitchell’s story on Instagram (@hopeforshug) because I want to use this to point people to Jesus. I’ve been pretty raw and pretty honest. My dad kind of gives me a hard time about it jokingly: ‘Why can’t you write without cussing?’ There’s sort of this mindset that Christians don’t cuss. But I’m like, ‘No! I want to be authentic to what I’m feeling. This hurts like Hell.’ It’s ugly and it’s messy. I’ve just wanted to be very real in telling our story and telling about Mary Mitchell’s life, and I want to continue to do that. All these truths, all these Scriptures I’ve been taught and I’ve said I believe- when you walk through something like this, it either crumbles or, as has been the case for us, it’s ‘Okay, this is real.’ It is faith starting to become sight. He’s been so near in the midst of the deepest unimaginable pain. It’s been through the Body- God’s provided an incredible community for us. It’s been worship songs. I have so many playlists that Mary Mitchell and I listened to all the time. I still listen to them a lot. It’s through conversations with our 8-year-old son, the questions that he has. God shows up. It’s a nearness that we’ve never known. My husband Mitch and I both say that we know God in a deeper way than we knew Him before, that we didn’t know was possible. And we have both said we wouldn’t go back, and that makes no sense outside of Jesus. I’ve experienced such a freedom. Now that I’ve experienced my worst nightmare, it’s terrible, but it’s kind of liberating too. I’m still here. I’m broken but I haven’t crumbled. The Lord has sustained.
Mary Mitchell’s life, short as it was and painful as it was, there’s been so much beauty that’s already come from it. I can’t tell you the number of people who have told me, ‘Your little girl led me to Jesus.’ That makes it all worth it. And I can say that, not pretending to understand fully what I mean when I say that. But I know one day, when the veil is lifted and the blinders come off, we’re going to see everything as it is. We’ll understand completely how He’s using all this for good- the answers to all the ‘why’s that we have. The thought of seeing her in Heaven literally makes me smile, because I think about it all the time. Somebody drew this amazing picture of Mary Mitchell with a good, kind lion. We have it hanging in our house. We also have a terrific picture of her that a photographer snapped before we took her to New York for the surgery that really started her treatment. When I think of her, I think of her like that, and I think of just running to her. I also wear a necklace with her name on it. I thought about whether to get Mary Mitchell printed on it, or her nickname Shug, which became Shugie. And I chose Shugie. Here’s what led me to that decision: The next time I see her, we’re going to be in Heaven and we’re going to be running toward each other. And I don’t think I’m going to be yelling ‘Mary Mitchell!’, because I always called her Shugie here. I just imagine her running to me and I’m running toward her yelling ‘Shugie!’ I think about it all the time, so many times throughout the day. And I have to remind myself that’s really going to happen. It’s not just something I think about or talk to others about to make me less sad right now. It is a reality. It’s going to happen. And I literally can’t wait. It’s not like I’m suicidal, but I’d be okay to go be with Jesus right now. There’s that verse that says He put eternity in our hearts, and I get that now. There are wounds and there are scars that are going to be there forever until we’re with Jesus. But one day all the sad things will come untrue. We believe that and we long for that.”