I don’t often write about my daughter’s disability. But the difficulties that it has brought on have created a pain that just exposes the true nature of my wicked heart. Ana has Down syndrome and has had a rare form of childhood seizures called ‘infantile spasms’. We have struggled with this and continue to struggle for her to become all that God has made her to be. Is Ana totally perfect and whole in the sight of her Creator? He “knit her together in her mother’s womb” and He “does all things well.” So the answers to these questions are a resounding and overwhelming ‘YES’. But my wicked heart cannot accept that. For instance I tend to wish for the calamity of friends of mine. I am now around lots of people who are having children, and I catch myself thinking about the demise of the peachy keen life that my friends enjoy in having “perfect” kids. For instance I had a friend recently who was talking about having his boy and how they had painted his room for the colors baby boys love, and so it better be a boy. My thought was, “what if it’s not a boy, and not only that but what if it is a terribly handicapped and disabled child, what then, huh?”. Yea I actually had that little conversation with that friend of mine in my own head. How ridiculous right? First of all that thinking is dumb because no one lives that perfect, peachy keen, bed of roses life. And secondly how dare I wish for misfortune and tragedy for people I would consider friends.
This is how I have been affected by disability. I love and cherish my daughter, and I am more grateful for her than words can express. The things I have learned in my walk with Christ as a result of having her are magnificent, but there are still these corners of darkness in my heart that having a child with disability have revealed. I have not given my pain and disappointment to God as I should and instead in those moments have exposed the sinister nature of my heart. In these moments that I imagine and wish for tragedy for my friends, I am so disgusted with the blackness of my heart. The Bible describes this type of heart in Jeremiah 17:9, “The human heart is the most deceitful of all things, and desperately wicked.” Who really knows how bad it is?” This is why I am so grateful for the cross and the gospel. When circumstances like this arise and reveal the dark corners of my heart I am grateful that the cross has already reached into those crevices and forgiven, healed, and restored me to righteousness. PRAISE GOD! WOW!
I love the writer Henri Nouwen. He had direct contact with pain and suffering working at L’Arche with disabled people. In regards to my pain and brokenness He said, “Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.” I am so glad that I have entered that personally so that I can enter it with other people, and know that Christ, my great savior, has entered it completely on my behalf.
|Ana Lydia and Me (Richard) Enjoying the Jump House at Ana's 6th birthday party|
Another aspect that disability exposes is loneliness, and isolation. I saw it this weekend as we celebrated my daughter’s birthday. We wanted so badly to invite friends of Ana’s from her special day class that she is in. We were aggressive in inviting all her peers in her class because we know firsthand the isolation, and loneliness that disability can bring. It is not always a purposeful isolation. People exclude you. They don’t mean to it is not malicious they just do. So we wanted to make sure all of Ana’s special needs classmates felt welcome. And so we rented a jump house just for that occasion where I would work hard to make sure all children in wheelchairs or a little wobbly on their feet were assisted to have a great time in the jump house. The first boy from Ana’s class came and I asked his mother if he could come in, she said, “He’s never done it before because they are always too full and people aren’t looking out for him,” and so he came in and I held him and we jumped together. The smile on his face said it all. It gave me great joy that I was the first one to take him into a jump house. He had been excluded up until that point, not because people are mean, and don’t want him to, but because the world is not built for him. I don’t accept that, and so we were so glad that this 7 year old boy could know and experience that he is included and maybe that might show him and his mother the acceptance that a good God has given them in Jesus.
Another example of the exclusion that children and families affected by disability feel is birthday parties. Ana hardly ever receives invitations to birthday parties. The first time that Ana was invited to a party was when she was 4 years old from a classmate at school. And so we want to be the catalyst to that type of inviting atmosphere. We will do it because of the great invitation that Jesus has extended to us, wretched sinners, into his great banquet (Luke 14:15-24). Recently another way Ana was excluded and overlooked was when a friend of mine was asking his 5 year old son to look out for all the other kids around him and he exhorted him by saying, “You are the oldest kid here.” Which wasn’t true. Ana was the oldest kid, and I know it was not malicious or ill intended, but he just overlooked Ana, she was actually a year older than his 5 year old boy. All these types of examples over the years make families affected by disability isolated and lonely. Some stay in that isolation just to make it easier and to avoid pain, but God has asked us to engage a hurting world in which we can act as agents of his compassion and comfort (2 Corinthians 1:3-7). That is why I need all the sin bound up in my heart to be exposed to the light. As painful as it is I am so grateful for this journey of disability, in which God is taking me so that I can be a comfort to others and point people to the grace and mercy that we can find in the cross of Jesus Christ.