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.
Thank you Richard for being so honest. Your compassion is inspiring. And what you said about your feelings toward other families with less problems - I hear you. I don`t specifically can comprehend what it means to have a disabled child, but what I mean is that I feel like that, too. When things don`t work out so well, when people have more talent then me and are younger at the same time. Just things that make you think: What about me.
ReplyDeleteI thank you for your honesty about this. Really really encouraging to see that I am not alone. Exposing sin and ecouraging others is a great reason to post this and it helped me for sure =)
Christoph
Christoph,
DeleteGod bless you! I miss you. My time in Germany this time with you was great. Be strong brother. God has great plans for you. I see so much potential in you and I know God is using you mightily right now! Trust him and he will guide you. I thank God for you!
Richard
It's so terribly easy to fall into the "poor me" trap. Here I was feeling lonely and sad because of some trivial problems in my life and then I read your wonderful post. Your daughter is beautiful and, though I'm sure it doesn't always feel like it, God knew that you were the right parents for her. You are demonstrating God's love by working so hard to include the overlooked. Keep up the good work and God bless.
ReplyDeleteChris
Chris,
DeleteGod Bless You! I hope God is your comfort during your sadness. Remember the great Promise of God, "The Lord is close to the Brokenhearted; He is close to those who are crushed in spirit". Be still and look for his presence in your trial. He will meet you! thanks for the encouragement. I hope you are encouraged yourself in the goodness of God.
Richard
Thank you for sharing this. We don't have a disabled child, but I have a disabled husband and we know well the pain of exclusion and isolation, among other things. It is hard not to regress into "poor me", especially when all you ever tried to do is honor God and this is what He seems to have chosen for you. I am going to pass on the link to our online Christian chronic illness community. I know others will be blessed by your honesty as well.
Deletethanks for the comment. I am glad it was helpful. God bless you as you face everything. May he give you the strength, hope, and joy to endure.
Delete