“Thriving With Disabilities” Conference

What a joy it was to be part of Lafayette Federated Church’s “Thriving With Disabilities” conference this past September. The church has a marvelous and extensive ministry to people with disabilities called “One Body Many Parts,” and we were excited to be invited to share our story.

 

img_6747

We traveled with our friends Dan and Dru Fridsma to northern New Jersey and enjoyed the hospitality of Dru’s sister Daralyn and the Sybesma family in their 1820’s farmhouse. Bill and Daralyn Sybesma have a remarkable family, starting with five biological children and, over the course of many years, adopting eight children with disabilities. Mike loved learning to throw a football from one of their sons.

 

The plenary session was led by Sib Charles of Joni and Friends ministry, and we followed with our testimony.  Since I (Maria) remember more, I did most of the talking.  In the afternoon, Dan Fridsma interviewed Mike. It’s fantastic! The videos are 15 minutes and 10 minutes respectively.  My notes for our testimony are below.

 

 

We thank God for all that he has done for us to be able to go (it’s amazing, right?!), for new friends, and even a chance to meet up with our daughter Madeline! Behold, as you pray, we continue to see God do more than we ask or imagine. Hallelujah!

 


Testimony for “Thriving with Disabilities” Conference | September 29, 2018

Thank you!  Thank you to the church and to One Body Many Parts for the good work you’re doing and for including us today.  Thank you to the Sybesmas for opening your home and your lives.  Thank you to Dan and Dru Fridsma for walking with us on this journey and joining us on yet another adventure. 

God has been doing an amazing and mysterious work, and we are honored to be invited and delighted to share our story of God’s faithfulness.

As you may know from the bio already provided, we had a whole different life as a lawyer and refugee advocate in Seattle before coming to Florida with our three young children in 1997 in order for Mike to attend seminary.  Mike began serving as pastor of Immanuel Presbyterian Church right out of seminary in December of 2000.  We poured ourselves into this congregation, and, even though living in a smallish town in the south was brand new to us, we grew to appreciate the gifts of doing life together in the same place with many of the same people for so many years. 

[Mike speaks here about what he remembers.]

On Memorial Day of 2015, Mike went out for a bike ride that changed our lives permanently.  He had a massive heart attack and was found on the side of the road. The EMTs saved his life, but in the 14 minutes between when his bike stopped and when they began CPR, there wasn’t enough oxygen for Mike’s brain.  Mike’s vast knowledge and memory were lost, but the essential Mike remains. 

Since this conference is about thriving with disabilities, and Mike and I understand the key to thriving is walking by faith, I want to share the promises of God that were most relevant along the way.

Chapter 1:  First days … and weeks and months

In the chapter I’ll call “First Days,” Mike was in a coma, and we were told that the Mike we knew was not coming back.  He was on life support, and they suggested in their nice way that we should consider pulling the plug, that Mike would never walk or talk and probably never see or hear.  Our kids were home for the summer, and the family of God was with us at the hospital and in prayer meetings, and every night I lay down in the hospital recliner by Mike’s side and thanked God for providing everything we needed that day.  There was enough grace for yesterday’s challenges and for every day before that; there has been enough grace for today’s needs, and there will be enough grace for the next need.  We were in crisis, and these familiar promises became meaningful and helpful and held truth in a way that they never had before:

  • I can do all things through Christ who strengthens me. (Phil. 4:13)
  • My grace is sufficient for you, for my power is made perfect in weakness. (2 Cor. 12:9)
  • God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work. (2 Cor. 9:8)
  • And all of Psalm 23, every verse, over and over again.

Over the course of that summer, Mike was in five different hospitals and one skilled nursing facility.  We thought a lot about what it means to wait upon the Lord, as we waited to see if Mike would survive, we waited for him to come out of a coma, we waited for him to come off the ventilator, to eat again, to walk and talk, and we wondered what the future would hold.

Psalm 40 took on great meaning, both for waiting and for Mike’s progress, starting to walk and talk:

  • I waited patiently for the Lord; he inclined to me and heard my cry. He drew me up from the pit of destruction, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God.
    Many will see and fear, and put their trust in the Lord.

Chapter 2. Coming home

On the 105thday after Mike’s heart attack, he came home.  The people of our church outfitted us with everything needed, including the renovation of a bathroom to have a wheelchair accessible shower.  We settled in to what we expected to be a long-term invalid situation, with a hospital bed in the living room. Meals were brought, volunteer helpers came, professional helpers were paid for—it was just amazing. The family of God became the hands and feet of God.  Our church is named Immanuel, which means “God with us,” and that’s just what was lived out for us:  God’s image-bearers were “God with us.”  The Lord fed me and inspired me with promises of his presence and help.

  • I will never leave you or forsake you. (Hebrews 13:5b, quoting from Deuteronomy)
  • Fear not, for I am with you; be not dismayed, for I am your God;
    I will strengthen you, I will help you, I will uphold you with my righteous right hand. (Isaiah 41:10)

Not only was God’s presence demonstrated by his people, they showed us the Gospel.  Here was grace, costly and sacrificial grace, grace beyond measurement, given to us.  It was grace that we didn’t merit and could never repay—which is the Gospel:  we can never repay Christ’s sacrifice to atone for our sins and bring us to God.

Mike’s first few months at home saw an astonishing amount of recovery.  Within about six weeks he was back sleeping in our bed and showering in our bathroom upstairs. He started to read and write not long after that.  It was a remarkable season! The pace of improvement has leveled out, but God is not done with Mike’s recovery!

Chapter 3:  Our new and evolving normal

This chapter probably looks a lot like your lives!

On the one hand, we are trying to steward the resources we have to maximize flourishing for the disabled person in our lives, doing what we can for them; on the other hand, there is a different daily work of the obedience of hope and of resting in the sovereignty and goodness of God. Paul’s message to the Thessalonians and to us was a call to rejoice always, pray without ceasing, and give thanks in all circumstances (1 Thessalonians 5:16-18). This is what it means to thrive with disabilities, and it is a work we do individually and with each other’s help.

As we have walked this journey of brain injury, we have all been learning from Mike.  The God who saved Mike and gave him the gift of faith has sustained his faith. He still fully identifies as the pastor of Immanuel Presbyterian Church, although he no longer has any role in leadership. Pastors are called to the ministry of prayer and the word, and that is exactly how Mike likes to occupy himself. 

[Mike to speak ]

Back to the first part of “new normal:” Daralyn asked me to mention my advocacy for Mike, though I wouldn’t say that I have had any success here.  We are all seeking to maximize the flourishing of the disabled person in our lives, as I said, and their role in the church is one aspect of this flourishing. As Paul explains in 1 Corinthians 12, the body of Christ can only do what God intended if all its parts are working, and our church needs Mike using his gifts as much as your church needs each one of you.  Unless all the gifts are being used, the church can’t do the work God has given it to do.  Although Mike continues to have a kind of pastoral ministry to the small group of people who spend time with him regularly, that’s about all.  He longs for purposeful work, as we all do as people made in God’s image. I cling to this promise: 

  • The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands. Psalm 138:8

The second part of living in the new normal—of thriving with disabilities—is not losing hope in God and fighting for contentment (or satisfaction or joy) in our present circumstances. This might not be the life we would have chosen, but it is the life that God Almighty thinks is the best for us, and that is reason alone to be satisfied with what He has for us today.

To quote Alec Motyer, a Biblical scholar whose commentaries I enjoy: 

  • This is the truth of the matter:  if we are in the soup, it is God who has decided what sort of soup it is, and at what temperature, and how long, and why!  He is God.  Jesus has assured us that we cannot be plucked out of his and the Father’s hand (John 10:28-29).  Where were we when the trouble came?  Why, where we always are—in his hand!  Did the trial [for our purposes, the disability] ‘get in’ because he let go of us? Certainly not; the trial only means that he grips us more tightly! (Psalms by the Day, p. 248)

Over the past several months, I’ve been going back to this verse.

  • Satisfy us in the morning with your lovingkindness, that we may sing for joy and be glad all our days. (Ps. 90:14)

It’s a prayer.  This is an imperative, but it’s not telling me to make myself satisfied. It’s a pray—it’s asking God to satisfy me!

All of which calls us to be people who pray. Prayer changes history, and it changes us. 

[Mike to discuss prayer and why he prays so much]

[Final thanks]


Thank you, beloved friends and family, for walking with us on our journey and for continuing to pray.

img_6740

img_6736

One thought on ““Thriving With Disabilities” Conference

Leave a Reply to Trisha Bailey Cancel reply