Trailers filled with tents, gas canisters, sleeping bags and cooler bags. Children playing excitedly, anticipating the hikes, fire-roasted marshmallows and all the joys of a camping trip with just their dads and friends. My eyes dart from the smiles on my daughter’s face, about to leave to go camping, to the tears rolling down my son’s. He won’t be going camping. This is disability.
‘With ability comes responsibility’ is often the rhetoric I hear coming from my mouth when my able-bodied children want to understand why I am not helping them get dressed. With disability though, comes inability and a daily reminder of loss.
With disability comes inability and a daily reminder of loss.
Face It: Disability Is a Loss
We all experience loss of different kinds in this life, but loss was never meant to be a part of God’s original, pre-fall creation. I’ve often heard the phrase ‘celebrate and embrace disability’. It feels like our world is moving from one extreme of trying to hide certain ‘types’ of people in society to now calling us to not only accept, but to even celebrate disabilities.
From where I stand, the idea of celebration and disability just do not belong side by side. Romans 8 reminds us that “the whole of creation has been groaning together in the pains of childbirth until now.” Disability is a stark reminder of the fall; our bodies are groaning and just don’t work the way they were intended to. The splints on the floor, the feeding tubes on the countertops, and the therapy bills to pay are evidence of this.
On a day-to-day basis we see the realities of a broken fallen world staring us in the face: the grade that will never be passed, the days of cheering on the side of the sports field that will never be. There are different losses that emerge for us and our child as each year passes.
God in his great mercy and grace invites us to lament.
Turn Your Weary Face Towards God
So, rather than celebrating loss, more often than not, the writers of the Bible lament. There are days when the burden and sadness are overwhelming. God feels distant. Doubts arise. Does God see? Does God even care?
In Psalm 40 David found himself in a pit of destruction; a miry bog. David cried to the Lord out of the pit and he waited patiently for the Lord. God in his great mercy and grace invites us to lament. He welcomes me to bring my broken heart, my shattered dreams of what will never be, my sadness over my son’s broken body and what can sometimes feel like sheer exhaustion just getting through a day. God wants us to share with Him our experience in the miry bog.
Wash Your Face and Embrace the Life You Have
John Piper so helpfully said, “Occasionally, weep deeply over the life you hoped would be. Grieve the losses, then wash your face. Trust God. And embrace the life you have.” This is not an encouragement to just ‘pull yourself together and get on with it’ – far from it. This is a deep laying down of my dreams and desires before my Lord with an open hand, believing with confidence that He is a good God. Believing He is a trustworthy God and the one who really does know best.
I need to move towards washing my face and trusting God by embracing the life in front of me.
Disability brings to the fore the starkness of our broken humanity. I cannot celebrate it but, trusting in God, the maker of heaven and earth, I can embrace it and joyfully accept this life that the Lord has chosen for my family and my disabled child. I need to move towards washing my face and trusting God by embracing the life in front of me.
Truth to Wash Away the Mud
In Psalm 40:2 we see David recalling God’s faithfulness to him as he falls back into the miry bog. He also says “My heart fails me” and later in Psalm 40:17 “I am poor and needy.” But interchanged all the way through, David recounts what is true, despite what he is experiencing. As he does this, the Lord draws Him out of the pit, sets him upon a rock and puts a new song in his mouth. I love the hope this offers me. Disability will always be there, but the pit does not need to be.
The truths about God in Psalm 40 help to wash the mud out of my eyes so I can trust the Lord through a reality that wants to keep pulling me into the pit. David says the Lord drew near to him, “…inclined to me and heard my cry.” (Psalm 40:1). I need to remember that the Lord is with me, He hears me, I am not alone, and my child is not alone. Disability can feel so lonely, but I am never alone. My Saviour is with me day by day. The truth to wash away the muddy mess.
Truth to Face Disability Head-On
As the days have rolled into years there can be a temptation to give up and say, “I am done now Lord, this is too hard, too tiring and too scary.” In my own strength, yes indeed, it is, but God says it is His love and faithfulness that preserves me (Psalm 40:11). It is God who sustains us day by day.
Later on in the Psalms, the writer in Psalm 94 says it was the steadfast love of the Lord that held him when his foot was slipping. The lure of the pit is strong, but I can trust the Lord to console my failing heart. With disability there is so much unpredictability. When will the next meltdown come? When is the next hospital stay or medical procedure? The Lord plants my feet firmly on a rock. We do not know what tomorrow holds, but He says we can be assured of His love and faithfulness.
Psalm 40:3 also promises me the hope of something more than just a clean face: “He put a new song in my mouth”. There is joy for today, but there is also joy that is coming, where there will be no more tears and no more suffering, but rather pure perfection (Revelation 21). The Lord has bought our salvation (Psalm 40:10). I can look to the cross and hold up my shattered dreams and my son’s broken body, and know that perfection and restoration are coming.
I can look to the cross and hold up my shattered dreams…and know that perfection and restoration are coming.
Stuck in the Mud With You
God has also provided us with the gift of community and it is often through this provision that we experience the love and nearness of the Lord. I remember the early years when leaving the house was just too hard. Moms and babies or kids’ groups were not an option, and most of the outings we had were to the doctor or therapist. I am so grateful for friends who had eyes to see.
There was a steady stream of visits to our home, the church moms’ group came to us or we met at a venue that catered for my child’s needs. We were not alone. An offer of childcare or facilitation at Sunday school so that I could listen to a sermon was like gold. I had a group of friends who would take turns to sit outside with me when my child could not handle being in the service. I was so grateful when friends would ask about my other children and were mindful of their needs, even offering to look after my disabled son so we could have some one-on-one time with our other child.
Not If, But When I Get Stuck Again
I may be on level ground now, but falling back into the miry bog is not a question of if, but when. David did and when I do, the greatest gift community can offer is the truth. It really is like those windscreen wipers washing away the thick rain that distorts my view of reality.
Reality is that God loves me, He is with me, He is my salvation, and I have hope for today and every day. Truth is the rock I can firmly plant my feet on in this ever-changing, ever-uncertain world of disability. If I am faithfully going to face disability head-on, I need community to help me to lament my losses, wash away the mud that keeps me stuck and keep me turning to Jesus.
