“MAAAAA!” Finley exclaimed emphatically. “Ma” and “My” are Finley’s go-to words in her extremely limited vocabulary. They could mean absolutely anything in the world. Sometimes the answer is obvious and other times it is an impossible mystery for me to solve. 

“Can you point to what you want, Finley?” I asked her, hoping it would give me a clue as to what she had been trying to tell me for the last five minutes. 

“Myyy.” Finley shook her head “no” to tell me what she wanted could not be pointed at. We had gone through all of the usual Finley options: Do you want a drink? Are you hungry? Do you want to go outside? Do you want a toy? Do you want to color? No. No. No. Sweet Finley had shaken her head no a thousand times and was still believing that I could guess what she was trying to tell me.  

“Mmmmmm?” She sweetly sounded, putting her right pointer finger up to her mouth as she contemplated another strategy for communicating to me what was in her brain and heart. 

“Let’s get your talker.” I said. I had been avoiding getting the talker because it was downstairs and we were upstairs. I had already been up and down those stairs a million times that morning gathering various items for Finley and usually I could guess what it was she was trying to say…however today I was struggling. 

“My! MYYYY!!” Finley shouted, shaking her head no. 

“Finley, Mama is going to get your talker.” I told her as I walked out of the room. Instantaneously there was an eruption of crying and screaming. My heart sank as I descended the stairs, grabbed her talker and walked back up to her room. Finley was losing it. Crying and screaming at the top of her lungs. She had been so patient with me, trying over and over to tell me something. Now, she was mad and who could blame her. I felt mad for her. I took a deep breath as I walked into her room. 

“Hey Fin. Mama has your talker. I know you are mad. I am sorry that I am having trouble understanding what you are saying. Can you tell me on your talker?” I knelt beside her bed. She was propped up in a seated position. As soon as she saw her talker, she started hitting and swatting it away.

“MA! MYYYY!” She cried and continued to shake her head “no”. I wanted to cry too. My heart broke for her. There is so much inside of her, seemingly stuck, trying to find a way out through her words, her body, her laughter, her eyes, so much life and passion that begs to come out, all trapped inside of an extremely limited body. I was at a total loss. My girl was in meltdown mode. I contemplated giving her space. I knew I needed some space-naturally I wanted to run. The screaming was so loud and I could feel my anxiety rising. There have been plenty of times when Finley would throw a fit for not getting her way or not getting what she wants when she wants it and I would have to say, “I will come back when you have calmed down.” But that didn’t feel right today. This did not seem like a fit about not getting what she wanted, this seemed like deep frustration about mama not being able to understand and her not being able to communicate. I took another deep breath, calming my insides down as best I could, schootched her over on the bed, pulled down the blanket and curled in next to her. I draped the blanket over both of us so we were in a blanket cocoon as she continued to cry. And cry. And cry. 

I don’t know how long she cried for. It felt like forever but it was probably only ten minutes. I had wrapped my arms around her and held her as the tears flowed down her cheeks, down her chin, down her neck, making the top of her shirt a tiny shirt lake. Finally she took a deep, deep breath and let out a sigh. 

“Finley, Mama is so sorry that I can’t understand you sometimes. I love you so much.”

“Aaaaawwwww.” Finley said as she curled into me, nuzzling her face into my neck.  I wondered what she had wanted to tell me. I wondered if this would be how it was for her the rest of her life, wanting to say and do and express but being frustrated daily by her limited body. This was not a new thought. I had wondered this countless times over the course of Finley’s eight years of life. I have questioned God up one side and down the other on “Why would he put so much inside of her and give her such a limited ability to express anything?” “Why” questions rarely get answered and even when they do, is the answer ever really enough to console an aching heart? Years of asking have not given me any answers, but they have cultivated a deeper understanding of what it is to trust God when I can’t see a way forward, when I don’t ever get an answer and when life doesn’t get easier. 

I am reminded of a time in the early days of Finley’s diagnosis when I felt so desperately alone, my heart heavy with questions and sorrow and grief over Finley’s circumstances. I was in a place of feeling and believing that no one would ever understand what I was facing. Even though there were tons of parents out there with kids of their own with quadripligic spastic cerebral palsy, it seemed that every parent I talked with their journey was different. Some kids with the same diagnosis talked and walked almost normally. Others faced more challenges than Finley, having to use feeding tubes and have even more doctors appointments than we did. And to top it all off, we were in church leadership. I had recently found out that only 20% of Christians with a special needs kid even go to church and here we were leading one?!?! Was this some kind of joke from God?! Oh, and all the families I was meeting who had a kid as severe as Finley had moved to be closer to family so they could help out. We had prayed and prayed if God wanted that for us and we had heard nothing. If anything, we felt even more strongly about staying in Chicago. Although Matt and I talked all the time about Finley and we were both grieving, he grieved differently to me. My sadness was always there, sometimes big and loud and in my face. At other times it was more of a haunting presence in the back of my mind and in the crevices of my heart. Matt’s grief tended to hit him at key moments all in one massive blow. We all grieve differently. Because of this, in some ways, I felt that even the person who should understand the most, could not.  Also, I was Finley’s primary caregiver so it affected my daily life more than his daily life…because of my circumstances, I bought the lie, line, hook and sinker that I was 100% alone and that no one understood. 

I will never forget that moment when God graciously stepped in the way of that lie. I was sitting in a pool on a hot August day and I was mulling over these toxic thoughts, wondering how I would ever get through this. 

“Heather, I understand what it is like to watch your child function in a body that greatly limits what they are able to do.” I felt God so graciously and tenderly whisper into my heart. “What!?” I thought to myself. And then it hit me. Tears sprang into my eyes as sweet conviction confronted the lie I believed of being alone and no one understanding. God, in his gracious mercy, had reached out and extended such understanding. He, as a father, the father of Jesus, watched Jesus, who knew all the freedom and beauty and perfection of heaven be born as a human man, live a life so extremely limited compared to what he was used to. I had never before wondered how that was for God the Father to watch his son live in a body so limited, so broken. Yet, he did it anyway. For you and for me, so that he could have moments like this, where he steps in our way, steps straight down into our thoughts and confronts lies that are trapping us, limiting us from knowing and loving and serving him fully. Finley may be limited by her body, but I can be just as limited with the lies I believe. She may be stuck in a wheelchair and with a mouth that will not form the words that her brain wants to say, but I can be just as stuck in the words I say over myself and live as if they are true. 

Jesus said, it was for freedom that he has set us free. Not so that we could live perfect easy lives, but so that we could know his peace and love and grace and all the freedom that they bring in the midst of the trials of life, in the midst of this limited life, were we can only see what is in front of us, where we are broken and in need of a savior every single day. So that his grace can find us whether we are soaking in a pool believing lies, or attempting to help a tantruming child.

I gathered Finley in my arms. She and I were not all that different. I had a wheelchair just like hers, you just can’t see mine. I needed the intervention of God the Father, just as much as she needed a physical miracle.

“I love you.” I whispered into her ear. “Mama may not always understand, but I love you and I will always be here for you.” She snuggled in and I savored the moment of stillness, being reminded that I was not alone. 

“He will cover you with his feathers, and under his wings you will find refuge. His faithfulness will be your shield and rampart.” Psalm 91:4

“He is close to the broken hearted and saves the crushed in spirit.” Psalm 34:18

“And surely I am with you always, to the very end of the age.” Matthew 28:20 

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