Thursday, May 1, 2014

White rice to black coffee

We were were recently asked to speak of our journey as a family at an evening supporting Joni and Friends, Greater Philadelphia. Here are our notes describing (pretty much) what we shared:

Good evening....with introductions.

This past March we enjoyed a business trip meeting in Puerto Rico.
Fifteen years ago we were at the same resort, different business trip and different company, and while I left the resort this time with a cup of Starbucks in hand, I left that time with a bowl of plain rice to go because I couldn't keep anything else down.   I was pregnant with twins and planning to tell the world when we got back.
As I ate that bowl of rice fifteen years ago I had NO IDEA of the ride we were in for...that these two babies would arrive ten weeks premature, develop cerebral palsy as a result, and our lives would never be the same. It's probably best we can't see into our future. That's not to say the journey has ended. Nope, we are still learning to maneuver the twists and turns of life with disabilities, to grieve when we recognize the loss of what typical expectations and transitions we had, and to celebrate the gift of life. Our time back at the El Conquistador resort caused me to be very introspective.

When we look back over the past years we have a few reoccurring themes to share...
First, this life was too much for us. It absolutely is. It's a God sized job requiring the family of believers to participate.  Trying to handle it on our own led us to ache with feelings  of fatigue and isolation. We had to get used to living transparently, humbled and without secret. We needed to allow anyone and every one in, regardless of the "mess" (physical, emotional, spiritual, material...oh yeah, there's a lot of mess). Funny thing is, about thirteen years ago, in the midst of feeling alone and asking  God to send us relief and wisdom, Jerry and Joan Borton were in the midst of opening their office in Souderton. Our first encounter with them was at a family retreat held at spruce lake camp. Coincidentally, that summer spruce lake camp had no openings for us for a family getaway weekend on our own at their lodge, but they did tell us to contact Joni and Friends  to see if they could meet our needs through their family retreat program.

Our first week at family retreat was memorable with a visit from Joni herself....and a lot of crying from the twins at being left in nursery care. Our older two daughters enjoyed every minute of it as they ran around enjoying camp activities, free from concern for their parents and baby sisters. That alone made it worthwhile. Truth be told, there was plenty of crying from me as well, as I found myself surrounded with others at different places along their own journey of disability and felt myself being ministered to in a unique way. We went back almost every year since then, even spending one week at a family retreat in California. All four daughters have grown in faith, friendships, and worth as a result of these special times.

(Hubby )
Well....they went back almost every year since then. Truth is, after that first year I wasn't thinking it was for me and that I was better off using that free time to do some projects back home. After years of camp, the girls all had a special place in their heart for the ministry of Joni and Friends and I began to feel challenged to invest in what my family found to be a time so healing. Once I committed to attending the full week five years ago I began to appreciate the times of teaching sessions for us as a couple, sharing confidences as men, and relaxing as a family.
Turns out, camp was, and is, for ME...A man, husband, father affected by disability.
We need others to keep us strong. In Ecclesiastes 4, new living translation, it reads:

9 Two people are better off than one, for they can help each other succeed. 10 If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. 11 Likewise, two people lying close together can keep each other warm. But how can one be warm alone? 12 A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.

We need  strands to weave in with, lots of them. Not just during a week of the summer, but all year long.  it's hard to do that, it makes you vulnerable. When living with disability it seems you are going to do all the taking and never the giving. But that's not how God has worked. God has a much bigger plan than here and now....and a huge part of that requires us to weave in with others. For that reason, I am grateful to my friend for giving leadership to our JAF men's support group which meets the first Monday of each month at my home church, Immanuel church of the Nazarene. And while we do sit around and talk about our feelings some, we really look forward to shooting a game of pool, watching the three stooges, watching a movie at a local theater, eating wings and especially our night out at the Iron pigs game.

(Me, again.)

It's no secret that women tend to enjoy getting together to talk and share feelings more than the men. From very early on in our journey I was privileged to meet spontaneously with a few local moms who were also navigating the world of disability. At some point I asked Joan if we could meet more officially under the lead of Joni and Friends. I volunteered to host the group if she could lead it. She agreed and years later we have outgrown our dining room table! Candy has been faithfully leading us in a time of devotion or study after our gathering begins with coffee and snacks. There is NEVER
 enough time to share and pray together on those first Wednesdays of the month.  I love this group of women. We have a special private page on Facebook and if I need to leave an S.O.S.  for help or information I know it will be read with sincerity and met with prayers. Please pray for these local moms...there is such a need for this support. Another group has been added this year meeting Friday nights here at Cornerstone church yet simultaneously our group, which feels comfortable at ten or twelve in a circle, has had several months of over twenty moms coming to our home. That ache of isolation we expressed earlier is a common feeling and many are seeking friendship and even some will learn for the first time of how to fill the ache with Jesus. We have several moms who drive close to an hour to attend.
Of course, another perk of being a local caregiver involved in Joni and Friends Greater Philadelphia is the day of pampering held at Calvary church in the fall. So much is wrapped up in that day of worship, games, lunch, massage, and makeovers! Unless you are a woman, you may not fully appreciate the thrill of eating a hot lunch prepared, served, and cleaned up by others while you visit and talk with friends at a table decorated with flowers, chocolates, and boasting of candles or hand soap to take home as a party favor. It's like a Chuck E Cheez birthday for forty year olds!

Feelings of loneliness and fatigue aren't claimed only by the parents. Siblings and children affected by disability desire supports and friendship as well. Our older two daughters have enjoyed the friendship and sense of community found  through Joni and Friend's siblings. They have assured me that there are just some things that can only be said and understood among their peers who are also siblings within a family affected by disability. They have shared that some of the life lessons learned so early seemed to matured them in ways different than their peers leaving them difficult to relate to. They were grateful for the opportunity to feel normal within their sibling relationships at camp.

I loved looking through the pictures (shared by Prezi) and seeing all the happy memories made during camp, siblings group activities, picnics, the Christmas parade and the Easter egg hunt. The egg hunt is especially touching to me. You see, about 12 years ago the reality of disability hit me hard at a community egg hunt. When the announcer shouted "go!" our 6 and 9 year olds were able to run and collect eggs as they had every year even hoping for a special prize. But Candace and Ciara were still mastering the art of crouching down, grasping one egg, and placing it into a bag by the time the hunt had ended. I came back that day very discouraged yet very determined. I remember dumping out everyone's eggs onto the lawn and working with the twins to re-collect the eggs slowly and surely so that they could enjoy the same experience while we delighted in their hysterical laughter as they completed the job. I later called Joan and asked if we could change that experience and do some sort of egg hunt for children with disabilities and their siblings. She recalled seeing some information on a hunt like that ... in Texas, and promised to look into it. We were attending Rockhill Mennonite church at the time, and so the following Easter a collaboration was formed and the first adapted egg hunt was born. It took place in the church parking lot and many eggs were "hidden" on car bumpers so they were reachable  by the few families that attended. I will always find that to be a sweet sweet memory! I'm grateful to the many who took the idea and ran with it, giving time and resources to the event. Now it is held at Quakertown Christian school as a two hour event with hundreds of people and thousands of eggs. For the past few years my daughters have enjoyed their new role of providing entertainment through music at the event. This year a mom drove two hours with her sons to enjoy the adapted experience together as a family where everyone could leave happy!

Thinking back to that business trip I tagged along on this past March, I am so grateful I was able to go. I hadn't slept that much in a long time! This journey we have been on has made me so tired at times... More than i thought i could be! On many nights I could relate to Jacob in Genesis 28:11 Who it says reached the end of his day and,"Taking one of the stones there, he put it under his head and lay down to sleep." I could've slept on a rock and not cared. I remember a time where each morning I got up thinking, "but I wasn't finished with yesterday yet'. I wanted to sleep fully between the days for there to be an ending of one before beginning another! Sometimes it made me panic before my eyes even opened. Then I recognized that God saw this, saw me, saw my days, and somehow trusted me to begin another day caring for those He loved (which included me). So I prayed Isaiah 40:28-31 to refocus, 
Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29He gives strength to the weary
and increases the power of the weak.
30Even youths grow tired and weary,
and young men stumble and fall;
31but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Then I took a deep breath and asked God to fill me with His strength and courage because I.had.none.left. I stopped panicking because I acknowledged it wasn't in me. It was in Him.  
That time away this past March gave me some quiet to reflect how we've changed, found strength, and been ministered to by God and His people...and That  provides its own kind of refreshment.

(My dear husband)

15 years ago walked into the resort in Puerto Rico with everything in my hand and under my control. A month ago I left the same resort with true appreciation for God’s loving, guiding hands so apparent in our journey and in my life.  The joy, the pain, the peace, the emptiness, the fullness, the disappointment, all have been part of God’s plan for our journey.  The last 15 years are so very different than I pictured then, but the ride for the journey has been nothing short of a miracle.

Yes, we were created to be together.  From the very beginning in Genesis, God was intention was for us to be in relationship with him.  Joni and Friends, Greater Philly, is a place for belonging…a place where we experience Jesus Christ through the active love of service to each other, some of whom are the most vulnerable in this world.  Matthew 25:40, “I tell you, whenever you did this for one of the least important of these brothers of mine, you did it for me.”

God celebrates as we worship Him together, each in our own way but fully in the way he created us.  Just when we think we are going to minister to those most in need, Christ makes an appearance in our own lives. We are much stronger as we, three individual strands, God, others and ourselves, band intertwined together to defeat hopelessness and know redemption and freedom in Him.  We are bound together by love.  I John 3:11, “The message you heard from the very beginning is this: we must love one another.” We have confidence and a hope for the future.  John 16:33, “I have told you this so that you will have peace by being united to me.  In the world you have tribulation, but take courage; I have overcome the world.”

As my family has sought and seeks to be known and loved, God was and is building a community through the Joni and Friends ministry to do just that.  There is no boundary for entry; everyone, wherever they are, is welcome…parents, spouses, disabled, siblings, down and depressed, fully energized.  Those who choose to actively step out of the boat into a vulnerable and different place of service, STMs, worship leaders, hair dressers, camp group leaders, friends will truly experience a small taste of heaven and see Jesus’ face.

We stand before you, all of you this evening, in honor and gratitude, for your ministry through Joni and Friends, Greater Philadelphia.  Because of your loving support to us through Joni and Friends, we have found the acceptance, belonging and love that we so desperately need each day.  Your actions of God’s hands in the ministry have given us the strength we needed on the journey.  We hope you have experienced that with us this evening in our words and pictures.  

Together, in believing, Jesus is our salvation.  Together, in believing, the Spirit fills our soul with peace.  Together, in God, we are completely loved.

Blessings in Christ Jesus!

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