Category Archives: Catholic Faith

All Are Welcome

“All Are Welcome” is a well-known and well-loved Christian hymn written by prolific liturgical composer, Marty Haugen. I’ve sung it often as a member of the congregation and even led it as a cantor on a few occasions, but never did the song impact me in the way it did this past Sunday when visiting St. John Chrysostom in Wallingford, PA.

This was not my first visit to St. John Chrysostom. I wrote a piece several years ago, called “Welcoming the Visitor”. My family and I had attended a Mass at the church at Eastertime while visiting our oldest son at Swarthmore College. I was so overwhelmed with their intentional inclusion, I wrote a story and connected with the pastor, Fr. Hallinan by email.

More than a year after my son has graduated from Swarthmore, I found myself preparing to bring our youngest son to the school for an official visit on campus. I happily anticipated an opportunity to attend church once again at St. John Chrysostom…I was not disappointed.

The moment I walked in, about ten minutes before the start of Mass, I observed several people with various kinds of disabilities. Ushers and members of the congregation greeted everyone in a kind and gentle way, expressing their joy to see them. One young adult, who seemed to be non-verbal, shook hands very enthusiastically with the greeter, a huge smile on his face. It was obvious to me that he was a valued member of the congregation and everyone he encountered was as glad to see him as he was to see them.

A few more steps into the church and I noticed some signage; one an announcement about a Caregivers Support Group and another about an Autism help line. These notices were not buried among many on a full bulletin board, but prominently displayed and easy to read.

I finally found a seat in the pew and listened to the choir warm up (a folk group with guitars, bongos and several singers.)  Of the six vocalists, the soloist chosen to lead a prominent part of one of the songs was an elderly woman with an exceptionally quiet voice. She was singing in tune, but it struck me as particularly refreshing that she was the one chosen for the solo. Not the strongest or the youngest voice, but an important voice and another obvious way that this church embraces the gifts of every person.

I could go on but you probably get the idea. St. John Chrysostom is a vibrant congregation with a strong understanding of what it takes to be inclusive.

I waited a few minutes at the end of Mass so I could re-introduce myself to Fr. Hallinan and hopefully get a few minutes to talk. We ended up chatting for more than ten minutes about our shared passion for inclusion and concluded our time together with a photo (thank you for that, Fr. Hallinan!). I expressed how grateful I was for all that this church does to promote inclusion and headed out the door.

As I got back in my car to head back to the campus baseball field, one of the points from my conversation with Fr. Hallinan that resonated strongly with me kept running through my mind.  St. John Chrysostom, like many other faith communities around the country, holds a designated service especially for individuals and families affected by disability. The “Mass of Welcoming and Inclusion”, as it is called at St. John Chrysostom is celebrated the 1st Sunday of the month. (The Mass I attended, by the way, was not on the 1st Sunday of the month, it was a regular Mass without this distinction) Fr. Hallinan said that his goal is that eventually they would not need to have the Welcoming and Inclusion Mass, that all Masses would feel welcoming and inclusive! We both agreed that an inclusive service can really be a helpful stepping stone for congregations and is still important for some individual and families affected by disability.  I couldn’t help but think, however, as I left the church, that if any congregation was nearing the goal of letting go of this kind of stepping stone, it was this church.

“All Are Welcome” at St. John Chrysostom, that is for sure in both obvious and subtle ways. I am grateful for their efforts and appreciate the opportunity to be an occasional visitor. I also know that there are many Hampton Roads local faith communities doing equally awesome inclusion work and seeing great results. If you aren’t already connected with FIN, please do share with us what you are doing. Your efforts could really be an encouragement to someone else or another faith community.

God Bless.

Karen j.

Essay Contest: Blog #3 Colleen Stefanowich

I have known Colleen and her parents through Young Life Capernaum and then The Chosen Ministry for many years and have always appreciated her quick smile and willingness to help.  Colleen is a friend to many, including myself and  my daughter Samantha who has autism.  Whenever we visit Church of the Holy Family‘s Chosen Ministry events and run into Colleen, I can be guaranteed a huge hug and that she will go out of her way to say hello to Samantha, understanding that Samantha cannot respond in kind but accepting and so loving all the same.  

It doesn’t surprise me then, that Colleen is so involved at her church and that she has an incredibly positive attitude. Thank you Colleen for submitting this essay and allowing us learn a bit about you. -K. Jackson

MY INVISIBLE DISABILITY

BY COLLEEN STEFONOWICH

“That is why for Christ’s sake, I delight in weaknesses, in insults, in hardships, in   persecutions, in difficulties. For when I am weak I am strong” (2 Cor 12:10)

Growing up with a disability wasn’t easy but having two siblings that I am close to helped even though they couldn’t take it all away. But them listening to me helped me growing up.  I felt bad for them, but I also thought they had it made.  I felt bad for them because they didn’t choose to have a sibling with a disability but they got one anyways. They also had to watch struggle with things that came easy to them. I also had to do things a bit differently than they did growing up. They never treated me any differently because of it.

I thought they had it made because in school, they were able to be in classes with other normal kids. They also got to do some rites of passages in life I never got to do. Things like get their licenses and go to a university.

I have a disability called dyscalculia, which is not a very well known or a very common disability, not very many people have heard of it. Dyscalculia is a math disability, so everything that has to do with math isn’t easy. For example, things like telling time (unless it’s a digital clock), making change, counting money, doing math , reading music. Reading certain numbers will actually overwhelm my brain because it’s way too many numbers, and my brain will   actually shut down because its way too many numbers too look at.

I was recently diagnosed with a vision problem called keratoconus.Basically, that’s just a big fancy word  for cone shaped cornea, which causes major vision problems, and potential blindness. I actually had a procedure done on November 15,2017 to help salvage the vision left in my right eye.

My church family is nothing short of amazing!! I sing in the choir, help with children’s church, and sometimes Sunday school by being a buddy for other students with disabilities. There have been some choir members   who give me rides home from church and practice. I have another choir member who so graciously helps me up and down the stairs from the choir loft for communion. I also have another choir member who has typed up the words to the songs in a bigger font so I am   able to see the words better due to my low vision. They have all done this without anyone asking them to do these things. All of these things have made it possible for me to feel an important part of the choir.

I love my Church of the Holy Family!

 

 

 

 

 

 

Essay Contest Blog Series-Blog #1

In preparing for this year’s Gifts of the Heart Gala, I was looking for an opportunity to highlight the voices of those who identify as having a disability. After all, our organization is about inclusion and the most important voice for disability inclusion efforts is (or should be) those who have disabilities themselves. Thus, in addition to our keynote speaker, Lisa Olson, who spoke eloquently about acceptance at the gala, the first Gifts of the Heart Essay Contest was born. 

I really had no idea whether or not anyone would submit an essay but we had a few things going for us. Number one, our good friend and sponsor, John Koehler of Koehler Publishing  offered up the $100 winning prize. Two, I had a vision that our winner and many of the participants would be recognized at our gala on March 11.  

In the end, we had six people enter the contest to share their own ideas of “faith” or what their faith community means to them. Additionally, we had two more writings submitted which we will also include in this mini blog series. 

All the entries were wonderful…beautiful in their own way and exactly what we had hoped for! These first two come from Ashley Bruno and Stephen Cox. 

Enjoy!

Karen Jackson, Executive Director, FIN

“What my Catholic faith means to me” by Ashley Bruno

“It means I like to go to St. Matts for adoration and rosary because I like to grow closer to God and Jesus. I like to go to St. Matts for Mass because I like to have my heart filled with joy. I like to help out at Meal Ministry at Courthouse United Methodist and I like to go to the Diocese Youth Conference in Richmond.”

 

 

 

ALL GOD’S PEOPLE by Stephen Cox

My name is Stephen.  I am 55 years old.  I have a very rare syndrome, Rubenstein-Taybi Syndrome, named for the two doctors who wrote a research paper about it in 1963, the same year I was born.  People with RTS aren’t all alike.  But they often share some of the things that are hard for us.

Part of my special type is that I have trouble with speech.  My brain thinks the words I want to say, but the way my mouth is made is al little different and my brain and mouth don’t always work together.  I like to say short phrases, but I usually speak too fast because I want my words to sound like the words feel in my brain.  You just have to tell me to slow down.  Sometimes you have to ask me to spell words you can’t understand.

I understand most everything I experience.  I can make good decisions and can figure out how to solve problems, but as an adult I am timid about going to new places and taking part in new experiences because it takes longer for my brain to process those unfamiliar things.  Still, I learn new things every day and learning is one of my favorite things.

I have never written an essay before, and when my mom asked me to tell about my church, I asked her to tell you for me.  I know she wrote this for me and she read it to me when she finished.  She even made some changes I asked for.

I go to Eastern Shore Chapel Episcopal Church.  I belong to a Christian family and I was baptized when I was a baby.  I went to Sunday School when I was a little boy.  I worried that my baby sister might have problems like me.  I kept asking “Baby grow up to be a big huge girl?”  It took a while for Mom to understand me, but she promised that our baby would be just fine and that I would keep learning and growing all my life.  I asked the same questions when that same little sister was expecting her babies.

I was older than the other members of my Sunday School Class, but we were friends anyway.  When it was time for my Sunday School class to learn about being grown up members of the church, I wanted to be a member.  I had to go talk to the Bishop, but after he asked me some questions, he said I was as ready to be confirmed as the others in my class.

These days I like to sit in the same church pew every Sunday, but I also like to stand closer to the altar when it is time for communion.  When we say the “Our Father, who art in Heaven” and get to the part about “give us this day our daily bread,” I like to put my hands out just like I do when Father Cameron gives me the bread.  Nobody tells me to sit down and they shake my hand and some of my friends give me a hug.  Everyone always says they miss me when I am sick and they try to understand what I say to them.  Lots of times they do understand!

My mom tells me that the people at church with me are called “parishioners,” but I call them “all God’s people,” because that’s who they really are.

© 2018 Faith Inclusion Network

The Parking Lot

I was excited when Virginia Pilot journalist Denise Watson replied to my email about doing a story on Faith Inclusion Network and our upcoming Gifts of the Heart Gala.  I always love to share about FIN and the work we do. After Denise and I talked on the phone, we decided to meet up at my church, Blessed Sacrament Catholic in Norfolk, VA one weekend before Mass to have a picture taken of my daughter Samantha participating at church, a shining example of inclusion as a person severely affected by autism but very much part of our church family.

I knew our Pastor, Fr. Joe Metzger would be fine with the plan, he has always been supportive of our efforts to include Samantha and the various cameras and reporters in the past coming in to film or take photos.  I should have known it would not be that easy this time around though.  Samantha’s anxiety, built up over the last few weeks for what is as of yet undetermined causes, kicked into high gear and she refused to get out of our van when we got to the church parking lot.

Samantha with Fr. Joe, Pastor at Blessed Sacrament Catholic Church in June, 2017

“Really Samantha?” I thought, “Here we are, trying to share about our wonderful inclusion experience and you won’t even get out of the car!” I dashed inside the church to tell Fr. Joe that Samantha was super stressed and not willing to come inside the church building.  He followed me outside to talk with her himself.  Samantha absolutely adores Fr. Joe so I thought he might convince her to get out of the van.

There in the parking lot we all gathered around Samantha.  Denise, the journalist and Bill, the photographer, could not have been nicer or more understanding. While Denise and I chatted, Bill snapped a few photos of Fr. Joe talking through the window to Samantha.

It wasn’t until the next day that I could organize my thoughts over this whole experience. On the one hand, I was sad and disappointed.  In addition to being worried about what is wrong with Samantha, I felt frustrated. We have worked so hard to get Samantha comfortable at church over the years and it has seemed to pay off. We generally sit together as a family in the sanctuary now and she is usually relaxed and happy, often wanting to linger after Mass. Her current behavior is unusual and a mystery. It is hard on all of us when we do not know what is wrong.

But another part of me realized that I was also very grateful.  I appreciate the people who meet us where we are, even if it is in the church parking lot.  And isn’t that what we really need to do when it comes to our families affected by disability? We need to meet them wherever they are, give support and encouragement through the challenges and let them know that they are not forgotten, even if unusual circumstances make attending church difficult or impossible.

So today I choose to be grateful. I am thankful for all those who love and support Samantha and our family, especially those connected through our church family.

I am sure Samantha will get through this period and we will be back in the pews soon. For now, I pray that this experience is used to touch someone else and be a reminder that sometimes, when you can’t go to church, church has to come to you, even if that is in the parking lot.

Amen.

Karen and Samantha Jackson

Autism Moms and Dads Blog Series-Interview #5

 

I “met” Dave a few years ago by phone and was struck by the similarities of our parenting experience, having daughters very close in age.  My family is also Catholic and has worked hard to include our daughter into the life of our local parish and teach her about the Catholic faith. After talking with Dave, I once again realized how important connecting with other parents can be, even if they are in another part of the country.  If you would like to keep up with Dave and his beautiful daughter, Danielle, take a look at their Facebook page, Autism with the Rizzos at https://www.facebook.com/Autism-With-The-Rizzos-281489198616138/

Also, I highly recommend  David’s book,  Faith, Family and Children with Special Needs; Spiritually Able http://www.loyolapress.com/products/books/family-life-and-parenting/faith-family-and-children-with-special-needs and the The Adaptive First Eucharist Preparation Kit https://www.loyolapress.com/products/special-needs/adaptive-learning/adaptive-first-eucharist-preparation-kit , which he helped develop. Both of these are wonderful resources for helping to teach the Catholic faith to persons who have autism.

Interview #5 Dave Rizzo

 

Question: How old was your child when they were diagnosed with autism? Can you share how you felt when you received that diagnosis?

Dave: Danielle was four years old when she was diagnosed with autism.  My wife and I knew something was up before this and we feared it was autism, but the formal diagnosis from a doctor didn’t come till Danielle was four.  The diagnostic process seemed endless. There were surveys we had to fill out, early intervention sessions, meetings with doctors and therapists.  When the formal diagnosis did come I felt a combination of intense dread and sadness, coupled with relief that at last I knew for sure what was going on with my daughter. The sadness came from the realization that the life I had imagined for her up to this point would not be the life she would lead, things like that I would never walk her down the aisle at her wedding, or that she would not go to college or lead an independent life. 

Question: How has living with autism affected your family? (immediate or extended)

Dave: It affected my family in a big way.  Raising a child with autism leads to a fundamental shift in family dynamics.  We had to arrange our family life around keeping Danielle safe, providing therapies, helping her with everything.  We had to give most of our time to Danielle and this sometimes meant not giving equal time to our three other children. I felt very isolated in those early years.  It took a while for us all to learn how we could be a family of a child with autism and balance all the competing demands.  Eventually we learned how to do this better.

 QuestionWhat is currently your biggest challenge as an autism dad?

Dave: We just went through the process of attaining guardianship for Danielle, who turned 18 last autumn.  It was very difficult hearing her declared a mentally incapacitated individual.  We don’t think of her that way.  We think of all the marvelous things she has learned to do, all her accomplishments, the way she has brought joy into our lives and in the lives of others.  It’s also still a challenge to see other children her age meeting milestones and typical rites of passage like learning how to drive.

 Question: What is currently your greatest joy as an autism dad?

Dave: Seeing how Danielle has grown into a fun loving person, who continues to spread joy to those she meets.  For me, I experience a special joy when I see Danielle at Mass participating with reverence, folding her hands in prayer, reaching out during the sign of peace, kneeling in prayer after receiving holy communion. 

 Question: Has autism affected your faith? If yes, how so?

Dave: Having a child with autism forced me to grapple with my faith and turn toward God in prayer and sacrament.  My faith became much more visual and experiential, as I tried to connect with both God and my daughter.  I have learned that the life I imagined was not exactly the life God had in store for me.  But I am trying to discover in my life that the action of God is unfolding the way it should, that the life God has in store for me and my family is a good life.

 Question: Is there anything else you would like to share about being an autism dad?

Dave: Yes.  I want people to know that it is a life changing experience, and a roller coaster of a ride.  As the father of a now young adult with autism I have learned to look at the world a little differently.  I make a lot of mistakes along the way, and it is often very hard. However, mostly things are good.  There is happiness, humor, sadness, exasperation, compassion, love, and all the emotions you can possibly imagine, but life is about all of these feelings, and always has been. 

 

 

Autism Moms and Dads-Interview #4

One of the blessings of being director of Faith Inclusion Network, is being able to reach out to FIN friends around the country and share in our projects. Many thanks to a wonderful FIN friend from New Jersey, Ms. Anne Masters, Director of the Pastoral Ministry with Persons with Disabilities in the Archdiocese of Newark, NJ,  for sharing my request for an interview with autism moms and dads with the families in the Newark Archdiocese. Mr. Tim Craig generously responded to this invitation for an interview. Thank you Tim for being so open and honest. We love to hear from the autism dads and open our arms to another FIN friend in New Jersey! Happy Easter, and thank you for sharing about your beautiful son, Clinton.

Interview #4-Tim Craig

Clinton Craig

Question: How old was your child when they diagnosed with autism? Can you share how you felt when you received that diagnosis?

 Tim: Clinton was about 27 months old when we received the diagnosis of classic autism.  Like many autistic children, he had perfectly normal development until age two (he had around 75 words and played and interacted with other toddlers in our Greenwich Village neighborhood normally). When my wife and I returned from our first trip without him since he was born (a week in Mexico), we noticed that he had stopped using his words, was not making eye contact, and was isolating from other children. In the classic sense that parents blame themselves, I thought he was “punishing” us for leaving him. Our pediatrician sent us to an ear, nose and throat doctor and neurologist, and when everything checked out fine, the neurologist referred us to a psychiatrist.  After visiting with and observing Clinton for about 45 minutes, we came back a week later and received the diagnosis.

To say that we were devastated is a huge understatement.  We knew virtually nothing about the developmental disorder – my wife was in tears the entire night.  We were due to go on a vacation in Vermont, near where we had both gone to college at Dartmouth in Hanover, NH, and I went to the library stacks and read everything I could find about autism.  I joked that I probably spent more time there that weekend then I did as an undergrad!  We were very fortunate in that our psychiatrist knew the author of the book “Let Me Hear Your Voice,” the story of a woman who had two children recovered from autism through intensive behavioral therapy, and, after talking with the author, we immediately started Clinton on a program of behavioral therapy at that early age.

Question: How has living with autism affected your family? (immediate or extended)

Tim: The first immediate affect that Clinton’s diagnosis had was our move to New Jersey (although I continued to work in New York City).  At that time NYC had little to offer in terms of specialized schools for autistic children.  We ended up in Maplewood, New Jersey, and Clinton’s first school was in Montclair, New Jersey.  It also affected our decision not to have more children (my wife comes from a family of eleven kids!), as my wife was 37 by then, and we knew the odds of having another autistic child were increased.  More importantly, we realized that taking care of Clinton was going to be more than enough of a challenge as it was.

In terms of extended family, it was difficult for us that both of our extended families (for the most part) were back in Michigan, 600 miles away.  Many other parents of autistic children had the benefit of extra help from extended family that lived nearby.  However, my wife’s sister who lived in Vermont did visit and help out often, and whenever we went back to Michigan we were able to get a bit of a break. Emotionally, our families offered a lot of valuable support.

Question: What is currently your biggest challenge as an autism dad?

Tim: I feel like our biggest challenges are behind us.  Clinton experienced a lot of problematic behaviors with the onset of adolescence (breaking windows, breaking any glass or ceramic object he could find, self-injurious behaviors and hitting others) that made for some really rough times.  Although every once in a while one of the old behaviors will flare up, he has seems to have mellowed as he has gotten older (I am sure that the medication he has been taking has helped).

Probably the biggest challenge right now is finding things for him to do that interest him; if left alone, he will just “stim” on watching videos (yes, video tapes on a VCR!) or listening to his cassette tapes (yes, on a “Walkman” – we should buy stock in eBay!). He loves to hike in the outdoors, and in the winter he plays on the special needs hockey team the New Jersey Daredevils (have to give a plug to this great organization – Clinton has been with them for over 12 seasons). In the summer he loves swimming in our local pool, although not as much as he used to.  So I would say our biggest challenge is to find things for him to do that he enjoys and that engage him in a positive way.

Question: What is currently your greatest joy as an autism dad?

 Tim: As corny as it may sound, just watching Clinton smile and experience joy.  He has the greatest smile and laugh – they only seem to disappear when a camera is pointed his way!  I am also so proud of him when he is able to order for himself at a restaurant (his speech is very hard to understand – it’s frustrating for me and his mom, because we know what he is saying, but others just cannot pick up on it most of the time), or say the Lord’s Prayer at Mass.  Really my greatest joy is just getting to spend time with him – when I was working at a law firm or for a corporation in the city, I really did not have that much time to spend with him and I really regretted that.  Now I feel like I am much more of a part of his life, and I would not trade that for anything in the world.

Question: Has autism affected your faith? If yes, how so?

Tim: Autism has made me more humble and grateful for all of God’s gifts.  Our church has been so welcoming to Clinton – they have accepted him as he is, as one of God’s children.  Two of my proudest moments as a dad have been when Clinton received his First Communion and Confirmation, and that would not have been possible without the kindness, acceptance and understanding of our church (St. Joseph’s of Maplewood).  So often people have come up to me after Mass and praised me for being such a great father, just by observing me with Clinton during the service (he likes to sit right up front, in front of the choir and organ!).  It always embarrasses me, and I tell them I am just doing what any father would do.

So yes, autism has deepened my faith and given me more reason to give Him glory and praise.  Tomorrow is Easter Sunday, and I look forward to celebrating this joyous day with Clinton, the greatest joy of my life (along with my wife – she might read this!).

Question: Is there anything else you would like to share about being an autism dad?

Tim: Being an autism dad has been a challenge, but it has paled in comparison to the challenge(s) my wife has faced. After Clinton’s diagnosis, she switched careers, and received her teaching certificate in behavior analysis, and for the last several years has worked in early intervention with the Douglass Developmental Disabilities Program through Rutgers, going into the homes of 2-year olds and using the same behavior modification techniques that helped our son.  So it has been autism 24/7 for her for quite some time, which is a really tough road to travel.

While our son is not one of the lucky few who were completely “recovered” from the disorder, and he will always need assistance and constant supervision in living on a day-to-day basis, it has been wonderfully rewarding to see his progress and to watch him grow into a young man.

In this Autism Awareness Month, I pray that we will someday find a cause, and eventually a cure, for this disorder.  In the meantime, I will continue to try to be the best “autism dad” I can be for Clinton.

 

 

The Avenue of Miracles

I don’t know if you believe in miracles or not, but this is the story of two kinds; one miracle of physical  healing for my daughter Samantha and the other, an amazing community response that felt as much like a miracle as my daughter’s actual healing experience.  I share this story out of deep gratitude for all the people of faith that I consider my friends. I give glory to our amazing God, who loves each and everyone one of us and listens and responds to our pleas in times of crisis.  I am thankful for the many circles of friends and acquaintances who responded with prayers, love, kindness and practical help when we needed it most.

 

 

The Avenue of Miracles

Samantha, my 19 year old daughter who has autism, had been breathing very loudly as of late and no one could really figure out why. I was convinced she had some kind of asthma, although the pediatrician didn’t seem concerned. But late one Sunday afternoon, her breathing became more labored than usual so my husband and I agreed to call the doctor’s office. The nurse heard my concerns and encouraged us to go to our local Children’s hospital ER so off we went.   Although we were thankfully sent right through without much of a wait, the long process began of trying to diagnose Samantha’s breathing problem.  By 11:00 pm, the ENT on call was worried about her declining condition and scheduled her for emergency surgery. He planned to insert a camera down her throat to determine what, if anything, was blocking her airway.

Tracheal Stenosis narrowing Samantha’s airway

At approximately 1:30 am, Dr. Reeves found us in the eerily quiet waiting room and explained what he found. Samantha’s airway was blocked by a tracheal stenosis that left an incredibly narrow airway. He had pushed back the scar tissue as best as he could and inserted a breathing tube. They would now treat with steroids and wait.   Having never been in the PICU, my husband and I were overwhelmed with concern and probably in shock. We left Samantha at 3:00 am, barely able to comprehend that our little girl lay motionless, with tubes everywhere and a machine breathing for her.   We went home for a few hours’ sleep (we are lucky to live within minutes of the hospital).

 

I arrived early the next morning to hear the doctors during rounds. The news was basically “wait and see”. We now knew she also had tested positive for two viruses and her lungs were somewhat compromised.   Friends began calling and texting, eager for news and to help. I posted on my Facebook page and sent an urgent request for prayer to family and friends by email. I was exhausted though and at a loss as to what more I could do.

 

CHKD-Children’s Hospital of the King’s Daughters, Norfolk, VA

It hit me early the next morning that the absolute most important thing I could do was pray. Well, I knew lots of people who could help with that! So I began to put a plan together. I sent out an invitation for friends to come to the small hospital chapel at CHKD to pray at a designated time. Many people on Facebook, not able to make it to the hospital, shared that they too would be praying at 3:00 pm on Tuesday.   Knowing quite a few clergy in the area, I asked several to come to the hospital as well. Our designated approved visitors list, which only allowed for 10 guests and one clergy, grew as Pastor Craig Wansink, Pastor Jack Howell and Deacon Derek Turrietta all made trips to the hospital.  The nurses seemed a bit confused (and I think they may have thought I was trying to game the system) but let them all in anyway.

 

On Tuesday at 3:00 pm, Samantha still lay motionless, now with a chest tube because one of her lungs had collapsed in the night.  My friends, Elizabeth, Rebecca, Karen, and Susan surrounded me with love as I let them pray the words I could not manage to speak aloud. We prayed for complete healing, for a clear airway, for Samantha’s comfort and protective calmness as she awoke out of sedation after the procedure scheduled for Thursday. I cried and cried, yet felt peace as my friends lifted Samantha up in prayer.

 

And then we waited some more.

 

Thursday afternoon finally came and Samantha was briskly wheeled back into the OR. Dr. Reeves told us he would attempt to push back the scar tissue some more and get a biopsy, as we still had no idea why the stenosis had formed in the first place. We settled in to wait the expected hour or more in the PICU waiting room.   Less than 30 minutes later, the doctor found us. Somewhat surprised he was back so soon, Dr. Reeves began his report.  All the news was good, he proclaimed.  In fact, he explained that he had gone back in with the camera and found nothing. He proceeded to show us the picture of Samantha’s completely cleared trachea. “There was nothing there to biopsy”, he continued, “and I see no reason to have to repeat the procedure in the future”, as he had cautioned us about the very first night. Through tears, I listened to him finish by saying he had never seen anything like this and no idea how the stenosis had completely, “resolved”, yet the picture was proof that Samantha had an absolutely unobstructed airway.

 

Of course, I knew immediately how it happened- the power of prayer. Hundreds of family and friends prayed on Samantha’s behalf, a whole community behind us… and the result? Our own miracle for our precious daughter Samantha.

 

The road to recovery has been slower than we expected. Coming off the heavy medication was difficult but she is improving every day.  Samantha was also diagnosed with Type 2 diabetes in the hospital and we are trying to manage this new medical challenge.

Today I am overwhelmed with a life-changing gratitude. As I continue to process the experience, I am immensely thankful for the help and responses of my many circles of friends during this crisis. My neighbors and close girlfriends made sure my house was clean and food in the refrigerator at home the whole seven days we were in the hospital, other friends brought meals to me in the waiting room and friends from my school who are employees of the hospital checked in religiously.  Still others took over the many details of the upcoming FIN National Faith and Disability Leaders Retreat and That All May Worship Conference, taking care of last minute preparations and ensuring all the events would proceed as planned, whether or not we were out of the hospital.   But most of all, the prayers and Facebook comments of those near and far sustained me, leading to what I accept as a healing miracle for Samantha. My community embraced us like never before, an example of how very important and powerful relationships and community support can be. As Director of Faith Inclusion Network, I have always believed in the importance of a strong faith community and making it available to everyone. As the mom to a child who was critically ill and healed through faith, I have a new and more personal definition. Because now, I clearly see community as God’s gift to us, a way in which He sometimes chooses to bless us with his power here on earth. Community, therefore, is many things, but for us, it was the avenue of miracles.   Glory to you O Lord. Amen.

#SITD2016-A personal story about the Summer Institute on Theology and Disability

 

I arrived at the Grand Rapids airport at 10:30 pm on Sunday evening somewhat anxious and already quite exhausted. I still needed to connect with someone I didn’t know, rent a car and drive us to Holland, MI, a 40 minute ride to the Summer Institute on Theology and Disability at Hope College. A few days before the trip, my daughter needed unexpected minor surgery. This meant an overnight stay in the hospital amidst much worrying and prayers, not to mention a quick rearranging of schedules. Let’s just say, I was not in a good mental or physical state upon my late arrival in Michigan.
That all began to change, however, the moment I spotted my friend, Shelly Christensen1039at the airport. Shelly, who is from Minnesota and is a personal friend, FaceBook friend and National Adviser for the FIN Board of Directors, gave me a big hug, exclaimed “Karen!” and then immediately asked, “How is Samantha?” I don’t know which made me feel better; seeing a friendly face after a long day or her concern over my daughter (she knew about hospitalization from FB) and how I was handling it all.  Well, yes I do. The support from a fellow special needs mom and disability advocate was an incredible encouragement. Shelly decided to come with me so we found our new friend Janine and headed to Holland.
The fun continued when once at the college, Shelly couldn’t get into her room. We decided it would be easiest for her to bunk with me for the night and at 2:00 am we turned out the lights and said good night.
By 7:30 am I was headed to breakfast, but not before I discovered that another good friend, this one a wonderful author and speaker, Jolene Philo was my suite partner. “Hi Jolene!” Shelly and I exclaimed at the bathroom door. More hugs and smiles.
We all headed down to breakfast and enjoyed reunions with more friends. David Morstad and Erik Carter were also attending SITD. The chance to talk with all three of these national FIN board advisors at the same time would come a little later in the day, but for now, hugs and a chance to catch up on personal lives was so much more important and meaningful.

Erik Carter, Shelly Christensen and David Morstad, FIN Board Advisers, with Karen Jackson, FIN Executive Director

Erik Carter, Shelly Christensen and David Morstad, FIN Board Advisers, with Karen Jackson, FIN Executive Director

Monday and Tuesday’s presentation were just amazing. How often does one get to hear from people like Erik Carter, Bill Gaventa, Hans Reinders, Tom Reynolds, Darla Schumm, John Swinton, Todd Billings, Tom Boogaart, Ben Conner and Randy Smit all in the course of a few days? “Yes, yes, yes”, I thought, over and over again. These people were here in Holland to share their knowledge and their passion and I felt so grateful for the chance to be a part of the whole conference.
By Monday night I had no business going out after dinner in my overly tired state, but who could resist the chance to hang out with the girls? New friends and old, the pub called and we stayed out late, just like college students (and we are all past college age, I assure you!) So much fun after a full day.
As we meandered back to our dorm, Shelly and I spotted a new arrival. “Jeff!!!!!! We screamed, greeting our friend Jeff McNair who had just arrived from California. Jeff accepted this overly zealous greeting with his usual humble attitude. “The girls always greet me like this!” he bragged with a smile. Another few minutes and I finally gave in and headed to my room. Time to prepare for the next day.
Tuesday was my opportunity to share by leading the opening worship time and then later presenting about FIN in a break out session. Although I felt both went well, the experience of leading the Morning Prayer and Meditation time was extremely meaningful for me. 20160524_084112_001Performing music at the Institute provided a chance to fuse my passions for music and disability work as well as experience another wonderful chance to bring others together, this time in song.
At one point, when leading the singing of the song “Let’s Share a Journey”, a song that intends to capture the importance of faith and community, I was almost started crying. To hear the 100 or so members of the audience singing “Let’s share a journey, the way it should be, let’s share a journey, you and me…” together was incredibly moving. I knew those lyrics and melody were given to me by our great and wonderful God-not my words at all but a gift to share. This will always be a treasured memory.


More amazing presentations and opportunities for fellowship filled the rest of the day. After the Tuesday afternoon prayer service, Anne Masters, another FIN friend who is from New Jersey, invited me out for a stout. 20160524_175852By the time we made our way to the Holland Brewery, we had a nice little group together. The night continued in much the same way, meeting up with people and making connections and starting friendships that will continue, I hope, for years to come. 20160524_175841

5:00 am came quite early on Wednesday. I was fortunate to have Jolene along on the ride to the airport. We chatted like old friends and parted quickly at the airport, both of us in a hurry to catch our flights. My trip back to Norfolk was fairly short and uneventful. I was glad to head back home and see my family.

Conferences are always fun; the combination of learning and engaging with others is an important part of many people’s development in their chosen fields. I went to the Institute expecting to hear from some great teachers and speakers, to see friends and meet new people who are also passionate as I am about faith and disabilities inclusion. What I didn’t expect was to experience an unparalleled camaraderie, moment upon moment of meaningful discussions, hilarious stories and the love and encouragement of friends that are doing incredible work across the country. Thank you to Bill Gaventa, Ben Connor and others who put together the year’s Institute. And a special blessing to all who attended #SITD2016-may your work in faith communities around the country and the world be fruitful and filled with joy. Hope to see you again soon!

See our FIN FB page for a full album of photos at https://www.facebook.com/FINhamptonroads/