April 2009

Should a mentally challenged person attend a funeral.  This question is often asked especially if a parent or family member has died.  I am not a grief counselor and I certainly don’t claim to be one.  I am not an expert in matters of grief.  However, I have some experience in this area.  For two years before coming to Special Gathering, I published a small magazine devoted to persons dealing with terminal illness, death and dying.

After coming to Special Gathering, which is a ministry within the mentally challenged community, I’ve helped to guide people with disabilities through trauma that results from grieving experiences.  Again, I’m not and I don’t claim to be an expert.  However, I do have some opinions and I would be interested in entering into an conversation regarding this issue.

To begin the discussion, let me say that death, and especially the death of a parent, is an extremely personal matter.  Every person, every family will deal with this issue in a unique way.  There is no correct template that can be applied to every issue regarding death.  That being said there may be some guiding principles.

First,  I believe that if the family has gathered for a funeral, a wake or a dinner after the funeral, the mentally challenged person should be given the option to come. 

Second, the person may not want to attend.  They may refuse.  This should not be taken as a rejection.  One young man I love decided to not attend his mother’s memorial service.  I held a private service for him.  I did exactly the same thing for him that I’d done for the family and friends.  He was able to spend some time thinking about his mother and praying for his family.  HE wanted to do this alone. It was the right thing for him.

Third, if the family is emotional in their reactions to grief situations, the mentally challenged person will probably also be emotional.  This is totally normal.  Of course, there are limits but the family will know those limits. 

Fourth, it the family model is more subdued the mentally challenged person will probably follow suite.  If not, they will be urged by the family to remain calm and not cry.  This is also right for this family.  However, be aware that the mentally challenged person will express his grief in other ways, such as anger.  This is also normal.

Fifth, the person who is mentally challenged should be made to feel a part of the family.  Family members should look for times to include and hug him.  Smile at her and throw her a kiss across the room.  Do something that will insure that s/he knows they are included, wanted and needed.

In short, if the family believes something is a normal passage through the grief process,  allow the person the option to also do it or attend.  Like everyone else, and perhaps, even more than others, persons with disabilities struggle with the insecurities of being wanted and needed, especially with their family during trauma and time of grieving.  Including them in this special family time will help to bond them to your hearts and make their grief passage so much easier.

What are your thoughts in regard to this subject.  Do you agree or disagree?  What are some of the things you have found to be effective?

My husband, Frank Howard, is a scientist who worked with NASA until he retired seven years ago.  He wrote a small manual called The Cryogenic Handbook.  My understanding is that it has become the reference manual for handling and working with cryogenics–which are super cold liquids, such as liquid oxygen and liquid hydrogen.   Over the years, he garnered a reputation that spread around the world regarding his expertise in cryogenics.  However, as he sometimes reminds me, it’s not hard to be recognized around the world doing something that only a handful of people are doing.

While no one wants to be called an elitist, the reality is that there are only a handful of people who do what we do–evangelism and discipleship to people who are cognitively delayed.  When I began calling in Honolulu, a large metropolitan city, to find a ministry or a Sunday school class that taught mentally challenged people, I could find no such animal.  The pastor at First Baptist Church of Honolulu, one of the largest churches in the city, acknowledged, “Wow!  I never even thought about that population.  There is nothing that I know about; but there really should be.”  That experience isn’t unique.

Even more rare are people who are called as pastors or home missionaries to serve the developmentally disabled community in a full-time capacity.  Yet, it doesn’t mean that people who are called to ministry don’t have needs.  I’ve bonded with a small group of pastors who meet each week.  They love me and honor the people Special Gathering serves.  Even more, they support the ministry with their prayers and finances.  However, I am deeply grateful for the relationship that I am slowly developing with man and woman across the US and Canada who are serving–as I am–in full-time ministry.  Finding, like minds and kindred spirits is important. 

After returning from a visit to Joy Fellowship in Vancouver last week, I felt the need to put into writing what I had learned from the experience.  Joy Fellowship is similar but different from Special Gathering.  Some of the things are cultural–they hug more.  Some of the things are physical–they rent a building.  We beg and borrow.  The wonderful thing was that I found almost not spiritual differences.  They are excited to see the mentally challenged population coming into a personal relationship with the Lord Jesus–so are we.  They are concerned that their leadership grows spiritually–so are we.  They are careful about teaching the truths of the scripture–so are we. 

These principles are bonding points and we can learn from each other in regard to technique and practical application.  Who are the people that you trust to teach you what you need to know about ministry to people who are mentally challenged?  Do you have a support group that cares about your spiritual growth?  Does this group help to you weed through the thorny issues you face in ministry?

We are to Love and Obey God even when it is a challenge

Deuteronomy 6:3

Central Theme:  We must obey and love God no matter how hard it is.

 Introduction–Deuteronomy is a book in the Bible.  It is one of those words we use and don’t know what it means.  It means “rehearsal of the law or repeating the Law.”  This book tells us again what God has told us in the Exodus, Leviticus, and Numbers.  It is important book because it tells us again that we are to love and obey God. Have a member read Deuteronomy 6:3.


       I.     Abraham was about to die.

              A. They had been delivered from Egypt and had spent 40 years in the wilderness.

              B. Abraham wanted to be sure that the people understood what God wanted from them so he took the time to tell them again and then he wrote it all down, again.


      II.     Some times don’t you get tired of hearing the same things over and over again?


              A. Clean up your room, pick up your things, turn off the TV. 

              B. The problem is that we don’t do these things and so we need to be told again and again.

              C. Years ago, I got sick and tired of hearing my husband tell me to clean out the car.  SO I starting cleaning out the car and guess what he never told me to clean out the car again.


     III.     God tells us again and again in many different ways the same things because we must learn to love God and obey him to live happy and successful lives.

          A. Ask God to put into your hearts his law so you can obey him.


Conclusion      Loving and obeying God is so important to us that God tells us again and again.

Florida Developmental Disabilities Council

124 Marriott Drive Suite 203

Tallahassee, FL 32301





Please Vote No on HB 371- Planned Residential Communities for individuals with Developmental Disabilities unless the following amendments are adopted:

Amendment 1:  600677 by Rep. Sachs

Create new subsection (3) of section 419.001 to read:
Planned residential communities must by their characteristics be community based and satisfy federal guidelines and state rules regarding the characteristics that distinguish community based settings from institutional settings.

Amendment 2:    530169 by Rep. Sachs

Create new subsection (3) to 393.501 Rulemaking

(3)  Such rules shall also address planned residential communities and define, consistent with federal guidelines, the characteristics a planned residential community must have to be considered community-based as distinguished from institutional.     

Contact your legislator and as many others as you can in the Florida House of Representatives (you can find them by going to our website(www.fddc.org ) and ask them to vote YES on Representative Sachs amendments for HB 371(600677 and 530169) and NO on HB 371 if the amendments fail.

Hurry because HB 371 could be heard as early as this afternoon on the House Floor!
·HB 371 would allow the Developmental Disabilities Home and Community Based Waiver dollars to be used for congregate residential communities that serve, with minimal exceptions, exclusively individuals with developmental disabilities and, as such, segregates individuals with developmental disabilities from the full community and individuals without developmental disabilities. 
·According to HB 371, the planned residential communities that could receive Developmental Disabilities Home and Community Based Waiver funding as a result of this legislation, could be developed with the many of the same attributes as an institutional campus such as Sunland Marianna:  gated, serving exclusively individuals with developmental disabilities, staff living on site with reduced rent as part of compensation, employment provided on site, day programs provided on site, congregate eating on site, and work days required of residents.
·HB 371 would mark a sweeping and far-reaching change to public policies toward people with developmental disabilities in Florida. Many individuals, families and advocates believe that enacting this proposal, particularly using funding that was intended for an alternative to institutional funding would be a move backward toward segregation, rather than progress forward toward integration.   




This time last week, I was on a small tour boat on my way to a tiny island in the middle of the Indian Arm in Vancouver Harbor.  There were 28 people on board. 

I have gone to view how Joy Fellowship, ministry within the mentally challenged community,  in Vancouver, B.C. would conduct their leadership retreat.  We are interested in learning how to better use our members who have leadership qualities.  I would like to take another week to mull over the things I learned but I’m afraid that rather than blending, it could ferment.  So here goes:

  1. In many ways, their leadership techniques are similar to those used in Special Gathering with shades of differences.
  2. Their leadership has complete freedom to contribute a thought, a verse or a song during the worship services.  It was common to have two or three people interject their thoughts during a teaching.  This could be a result in the fact that Joy Fellowship has a worship service on Sunday.  Then during the week, they have their Bible studies.  At Special Gathering, we have our worship time, then a Bible study afterward.  We ask our members to not interrupt the worship time.  However, they are encouraged to ask their questions during the Bible study time.  I’m actually not sure which I prefer.  However, I found the spontaneity of their leadership refreshing.
  3. The teachers taught passages of scripture, rather than one or two verses.  This gives the members an overview from the scriptures of what the main principle is.  At Special Gathering, we read one or two scriptures and teach only one point during each devotion.  During the devotion, we will tell (rather than read from the scriptures) the Bible background of the story we are teaching.  There may be two or three points in the Joy Fellowship teachings.  Because these men and women are higher functioning, they appeared to be able to assimilate all the points.  Because I didn’t attend a regular service, I wasn’t able to see if a passage of scripture is also used in the normal worship services.
  4. They had an interesting combination of preparation and informality.  The entire weekend was presented in written form contained in a booklet of questions and activities.  This gave the people leading the small groups concrete instructions to follow.  These groups were exceptionally easy to lead because of this booklet.
  5. The informality came during the teaching time and praise and worship.  For example, during songs the signing choir knew, they would come up as though on cue, though there were no verbal instructions.
  6. Some of the leadership had become a tad bossy with the other members.  There was gentle instruction and correction given.  This is an issue we also face and we have to address when it occurs.
  7. Last year after their leadership retreat,  a member of their leadership team had collapsed and died on the dock  immediately after the retreat.  Because of this, there was a need for a memorial service during the retreat.  This was bitter/sweet time for everyone.  I was happy to see the teacher hit the issue of grief head-on with tears of remembrance and joy that a friend had gone to heaven.
  8. The ushers and signing choir had been trained to respond automatically to their service offerings, rather than on cue. 

Of course, there was more but my mind is still sorting.  In all, I was impressed with their leaders and their teachers. 

What are some of the things you have learned regarding leadership that you believe are important to share?

Of course, I remember when time dragged by, unless it was summertime or the weekend.  But that was several decades ago.  It’s April and I only begun to feel really comfortable writing 2009.   My mother told me that as she got older and dementia slowed her activities,  time began to slow down again.  That made me a bit sad.

 I visited with a couple who are approaching their eighties this weekend in Canada. They are the founders of the ministry, Joy Fellowship.  They are still active with nonstop phone calls, visits to make, letters and e-mails to write.  They were commenting that the first months of 2009 have flown away.  It was refreshing to hear.

While I dislike the fact that there seem to be more tasks than time, I would hate for the opposite to be true.  I have a close and dear friend who is only a few years older than I.  He has nothing to do but eat, sleep and go to church on Sundays.  While he never complains, he also does not seem to have much interest in his surroundings, except watching the next TV show. 

Chris and Lisa are twins who attend Special Gathering.  They are joyful, peaceful spirits.  Chris is blind but sharp as a chef’s butcher knife.  Lisa is much lower functioning. Yet she radiates love for her sister and life.  I don’t think time passes too quickly for them.  But I know it doesn’t drag either.  Together they share a peaceful bond of love for each other and the Lord.  They sing and laugh during our worship times.  Their caregiver tells me that they are so joyful that taking care of them is a delight, even though it is arduous work. 

Whether time is your friend or your foe, whether it zooms by at lightning speed or creeps around you like a snail, it is the reality with which we all live.  As my hosts showed me this weekend, making the most of the time we’ve been given is the key to conquering the time complex.  And the twins remind me often that the fruit of the Spirit–joy and peace–make our time tasks delightful.

Is time your friend or your foe?  Does it speed along too quickly or creep too slowly for your tastes?  Do you think that activity is the key to redeeming the hours?  Or do love, peace and joy hold the answer?  Perhaps, it’s both?

There are a few people who don’t have to do because they can simply be.   When they enter the room they bring a vital presence of God along with them.  That was my new friend, Joanne. 

Joanne is Chinese-Canadian and more than 80 years old.  She fiercely introduces herself as Canadian but her straight black hair, dark complex, small statue and eyes betray her Chinese heritage.  She barely reaches four feet tall but she is a giant in the faith.  Spending almost 30 years in India doing tribal missions, she was forced to leave her adopted home in the early ’70s and returned to Canada.  Since that time, she has traveled all over the world, doing short-term missions work.  Some of her stays were years.  Other were weeks. 

Her mission field is now the mentally challenged community.  She is the co-director of the signing choir for Joy Fellowship in Vancouver (JFV).  With all her years of experience and training, she meekly says, “I leave most of the leadership of the signing choir up to Shawna, who is my co-director.  We use different sign languages.  And to be honest, Shawna is a much better teacher than I am.”   Shawna is about 25 and a high-functioning member of JFV. 

After spending a few days with Joanne, I admitted to her, “You are what I want to be like when I grow up.”  We had just completed a mountain hike of about a mile.  Joanne had jauntily agreed to go with us.  Of course, we had to wait a bit for her but her laughter and joy made the slight delays well worth our time.

She will travel this spring to a nation which was formally part of the Soviet block.  She will go with a group of educators.  They were invited by the government to teach ethics and moral development.  After four days of the “official” seminar, they will take an unofficial day to teach the scriptures and the ethical applications of the gospel.  In previous years, everyone attended the extra day and almost all of the attendees accepted Jesus as their Savior and Moral Guide.

By the end of our weekend together, Joanne promised to come and visit us in Florida.  “I can’t come this trip,” she said.  “But I’ll be there.”  I look forward to being with her again because I know that I can learn so much from her about teaching and living and humility. 

Pooh, I might as well be honest. I don’t care, if she teaches me anything.   I just like being around someone who brings an almost tangible presence of God with her.  Don’t you?

Her raven, black hair shines and her industrious handiwork produces intricate birthday and get-well cards that delight all the people who receive them.  This serious, inquisitive young woman is about 25 years old.  She is of Chinese descent and a Canadian citizen.  For two nights last weekend, Lisa was my roommate at a leadership conference I attended with Joy Fellowship, a ministry within the mentally challenged community, in Vancouver, BC. 

Friday evening we were in bed late.  Though I was bone tired, I wanted to read my Bible before I retired for the night.  I dutifully propped up my pillow and positioned the scriptures on my lap, as I sat up to read in my bed.  We were on an island in the Indian Arm outside of Vancouver.  The beauty of the island surrounded by black water and forest-covered  mountains had exercised my excited brain all afternoon. 

Lisa, part of the member/leadership team of Joy Fellowship, propped herself up in her bed and read her Bible silently with me.  The next night our routine continued.  A few minutes into our devotions, we heard snoring coming from the next bedroom.  However, Lisa mistaking the origin of the snoring asked, “Why do you snore when you read your Bible?”

“That’s not me snoring,” I said, laughing.  “I’m awake.  The snoring is coming from the other room.”

“But you snore when you read your Bible.  You did it last night.  Why do you do that?”

Again, I laughed.  “Because I fell asleep.”

“Umm,” Lisa pondered the mystery.  “She can sleep while she reads,” I heard her muttering to herself.

Interesting, Lisa, my new friend from Canada, has exposed a new talent I had not known I had.  Often, the best and the worst  is graciously exposed by the austute observations and simple faith of members of the mentally challenged community.  Lisa is a new Christian who wants to serve God but still confuses her new faith with her old traditions.

I, on the other hand, am a much more seasoned Christian who snores while I read my Bible.  Guess there isn’t much difference there. 

What are some of the things your members have exposed in your life?  Are they good traits or things you wish you could discipline more accurately?

I set up everything for our chapel service ahead of time as usual.  I don’t like surprises when it comes to our worship times.  My praise and worship cheat sheets are there.  My sermon is in place.  The scriptures are found.     

I was, of course, thrown off guard when my sound system chose not to work.  We had to do praise and worship with a small CD player.  During our prayer time, we had to put our deacon who prays for our members in a chair because he was weak from a recent illness.  As he prayed for our members, something awful happened. Our deacon fell off his chair crashing to the ground.  He wasn’t able to get himself up.  Another member who has a crush on him, rushed up to help.  We couldn’t get her to get out of our way so we could assist him.  Finally, he got himself up but the entire episode spoiled the atmosphere usually established during our prayer time.

Now it was time for our devotions.  The sermon I had carefully placed turned out to be the wrong week.  The scripture was wrong.  I had left the correct sermon in my van and I didn’t discover it until it came time to give the devotion.  Because I was so distracted by my sound system woes, I’d not carefully checked the sermon.  By God’s grace, I had gone over the sermon multiple times in the morning.  So I was able to preach it without the notes.

Recounting the entire horrific day with a volunteer from another area, we started to laugh at the misadventure.  By the time, I got to the lost sermon, tears were rolling down our cheeks. 

There are few things in life that can’t be eased with the delightful joy of humor.  During hard times of pain, suffering and even death watches, families often break into laughter, mingled with their tears.   

I am always delighted with Teri, a Special Gathering member, who has a great sense of humor.  Though she isn’t able to speak as plainly as she would like, she can make people laugh with her facial expressions and gestures.  I have seen her keep a van full of people laughing for 15 or 20 minutes.  When I inquire, “What did she say that was so funny?”  The answer is always the same, “I don’t know but she is really a funny person.”

The gifts that God gives to us are listed in Romans, Ephesians and Corinthians in the New Testament.  While one of those gifts isn’t humor, it is still one of the most valuable treasure humankind possesses.  A well-developed sense of human, I’m told by the experts, is a sign of high intelligence.  While I know that is true, it is more a sign of a joyful and thankful heart. 

Only God can turn a day of mistakes and missteps into a laugh session where tears flow from the humor.  God is good.

Who is the funniest person in your ministry?  Which one of your members is able to make you laugh most easily?

It is A Challenge to Get Along with Others

Romans 12:18

Central Theme:  Living at peace with other people is important but it is a great challenge.


Introduction–More and more people are using the peace symbol again.  Show the symbol.  Back in the ’60’s it had a lot more implications than just “world or personal peace.”  It meant a whole culture of drugs, sex and rock and roll, rebellion and civil disobedience.  There was nothing “peaceful” about those times for most people.  But the symbol has survived and as much as I rejected that symbol, I’m beginning to think that this is may be a good thing because we are to live at peace with everyone. Have a member read Romans 12:18.


       I.     Bible heroes have all had people they did not agree with.

          A. Abram and Lot had to part ways because their shepherds were fighting.

          B. Paul and Peter didn‘t seem to get along.  Each wrote about the other person in not too complimentary ways.  Paul rebuked Peter for sitting with the Jews instead of the Gentiles.

          C. Paul and Barnabus parted because Paul wouldn‘t take John Mark on the second missionary journey.

          D. But in each incident the people were able to work out their difference.


      II.     Living with others is a challenge; living in peace seems impossible at times.

              A. Special Gathering should be a safe place.

              B. As you get to know each other better you will have challenges and maybe even arguments.

              C. We are to live at peace not matter how much we might argue or disagree with others.  God’s peace come by forgiving each other.


Conclusion      Getting along with others is a challenge, even Bible heroes had a hard time; but we can work at it and make it happen.

Consumer and Families Leadership and Development Assistance Program    
 RE: Opportunity for People with Disabilities

People  with  developmental disabilities and their families are offered the opportunity  to  apply  for  financial  assistance  to  attend conferences, workshops  and  other learning opportunities through a grant awarded to The Florida  Center for Advocacy, Research and Education (Florida CARE) through the Florida Developmental Disabilities Council, Inc.

This  project  will  enable individuals with developmental disabilities and their  families   to become better self-advocates and enhance their quality of  life  through  improved  knowledge  of  many  aspects of the disability system.   In  addition,  this knowledge will facilitate their inclusion and
participation  in  numerous  planning and decision-making committees, forum and leadership in organizations in their communities.

More  than  35  people with disabilities and their families will enjoy this opportunity.  These  individuals  will  come from different demographic and targeted  groups around Florida and will be selected through an application process.   Interested  families  should  go  to  www.floridacareinc.org and complete  an  application  for  consideration.   There  is  also a calendar listing upcoming opportunities.

Florida  CARE  passionately  advocates  for  people  with  disabilities  by providing   corporations,   school  districts,  groups  and  families  with employment  coaching,  transitional  skills, ADA compliance tips, diversity planning and outreach, disability awareness and hiring techniques.

We read in I Chronicles 21, God stopped a plague when David sacrificed at the thrashing floor of  Araumah.  David had sinned and conducted a census.  God had given him three choices in punishment.  David had chosen to receive punishment from God rather than man.  It is an awful story dealing with the cost of disobedience.  The sad thing is that David sinned but all of Israel had to pay the price of that sin.

David had been right to trust God’s punishment because as the Angel assigned to conduct the plague approached Jerusalem, God did not want to destroy the city.  He initiated David’s offering the sacrifices which halted the plague.  Then, in chapter 22:1 after the plague had been stopped by David’s sacrifices, David said, “The Temple of the Lord God and the altar for Israel’s burnt offerings will be built here.” 

David wanted to mark for all time God’s desire to be gracious even in a time of punishment.  David said, “Here.  The Temple will be here.”  Interesting, that in marking God’s gracious turning from punishment, David was also marking his own sin of pride. 

For most of my life, I’ve heard debates regarding this passage.  How could God punish a whole nation for one man’s sin?  I don’t know the answer.  But David chose to significantly  mark God’s merciful acts by erecting the building of the Temple in that place.  For many centuries, David’s decree for the placement of the Temple has overriden his foolish and prideful sin. 

Again, we see from the scriptures that God can make great revelation come from great pain and even great sin, when we turn to him for redemption.  My friend, Dolores, was a world-renowned solicitor in disability law.  She once told me that her son, who was mentally challenged, was the best companion she had ever had.  “I’ve had two husbands.  One was a doctor; the other was a lawyer.  I’ve sat with women and men who held high positions in our government.  I’ve been friend of  lawmakers, governors and aristocrats but my son’s simple humor and loving ways make him a most pleasant person.” 

Long past was the distressing questioning of why he was born with a disability.  Dolores had learned to replace those doubts and concerns by marking God’s graciousness and the love she found in her son with a thankful heart. 

How many of your parents have learned to build temples of love in lives where others would see only failure and disappointment?  Have you been able to erect a Temple of God’s love in lives that are often rejected because of their disability?

For more than 40 years, I’ve read through the Bible at least once each year.  Some years, I would read through the New Testament every month and the Old Testament each year.  Yet, during the past four or five years, this daily discipline has been a terrible struggle for me.  At first I wasn’t particularly disturbed, I’ve felt study and reading the scriptures was a discipline that needed to be done and it wasn’t important to enjoy it.  Nevertheless, I did miss the joy I’d always had in discovering new and exciting nuggets hidden in sometimes obscure portions of the Bible.

I still understood the benefits of daily reading and study.  However, it seemed that everything was a deterrent to me.  In fact, there was almost a bitterness in my mouth each time I would open up the Scriptures.  This greatly disturbed me and I prayed that the Lord would take it from me.  However, it persisted for at least five years.

Even though a struggle, I consistently read through the Scriptures each year.  Then a most wonderful thing happened last January.  One evening, I thought, “I need to go to bed and read.  This is the most important thing I’ve done all day.”  Without the bitterness or tension, that I’d become accustomed to feeling, I got up, went to bed and read my Bible. 

Every night since then, I’ve been able to read my Bible before I go to sleep.  Yes, some nights I fall asleep reading but I continue until I’ve finished.  Some evenings, I tell myself, “I’ll read and then I can get back up and finish my project.”  Then I speak to myself, “This is the most important thing you will do today.” 

Such a simple word has taken away the bitter taste and the hesitancy with which I’d struggled.  For me, it’s a real miracle, giving me back one of the true joys of my life–reading God’s word and hearing Him speak to me with revelations and hidden treasures.

It is hard to recount how many simple words of truth have changed my life by inches.  Most of the time, other people have spoken those simple words of truth to me.  My mother, a Bible teacher, a loving friend, my children.  My first memory of this happening was when I was seven years old, a substitute Sunday school teacher chose me first to give me the new quarterly.  I’d never been first in my life.  It was a thrilling experience and a turning point in my young life.  God used that lady to let me know that I was important to him.  I’m going to find her in heaven some day and thank her.

In working with people who are developmentally disabled, we are often working with folks who don’t expect much from God or society.  You can give them simple words of hope, joy and release.  Simple, loving words can change lives. 

How many simple things do you do that help to change the lives of your members?  How often are you the vehicle that reaches out and says to a person who never expects to be first, “You are important to God”?

I know the proper way to refer someone to another blog entry is to link it, but I’m afraid that you won’t go there.  Therefore, I’m including it.  You will also want to visit Tony Piantine’s blog. 

Today it is April 10. For most people…just another day. This year April 10 is Good Friday. For my family, it is a day that I believe keeps us all remembering and mildly sad. April 10 was my brother Dan’s birthday.


For many years after he died. we sent cards to each other on this day. Eventually we stopped, because it seemed less to do with grieving and more to do with habit. But this day is always one I know is coming and I like to see it going. 


This week I have been remembering a lot about those days growing up. Recently several of our friends with kids with disabilities have had to spend time in the hospital. Hospitals always make me think of Dan and my family.


We did spend a lot of time at Children’s Hospital in Chicago. On one hand it seemed to be the most hellish place on earth to me. Kids sick, dying. Parents hurting and crying. Brothers and sisters trying to make sense of the fear, hurt, worry, stress, love, tears and hugs.


But on the other hand I know that was where I learned to know God. 


I remember always having to walk through the ER after hours to get into the hospital. Walking among those families with kids crying, I remember finding a quiet corner and wanting to be so angry that so many people where so sad and hurting.


I remember the baby boy in the intensive care room next to Dan’s that no one came to visit. I remember the morning after that baby boy died, crying in the waiting room bathroom. It seemed heartbreakingly unfair that no one was there to love him.


I remember my mom so fatigued and sick after many sleepless nights on the intensive care chair/bed at Dan’s side that she stumbled when she walkedI remember standing in the hall outside Dan’s room as we left to go home for the night with Dad, and hugging my mom and feeling her sobs of sadness that Dan was so sick. . I remember being scared as I shut the door on Mom’s bedroom that night after I looked in on her when she came home. I remember sobbing in my bed that night as I wondered if Dan would die, or if my mom would die because she seemed to hurt so bad.


But I also remember spending time in Dan’s hospital room watching movies, talking, just hanging out with our family. Sometimes we would get Chicago pizza or snacks. Sometimes we would goof off and try to scare the nurses. Those were moments most families don’t understand. In the middle of the crisis, the middle of the battle, in the middle of suffering and heartache, there was peace, love and always time for our family. It was secure, loving, never rushed and no one had anything better to do–those moments when life in the outside world stopped abruptly and all that mattered was each other. 


This may sound stupid, but, oh, how I wish to be sitting in that intensive care room now. With beeps, and buttons, equipment, doctors and nurses in and out, Dan in his iron lung right in the middle of it all and our family gathered round, watching the Cubs game and eating pizza. Those days in the hospital have shaped my life, my belief. It was where I first sensed the God I was learning about in Sunday School and Children’s Church. In the calm of the storm, the peace in the intensive care room…I knew God was there with us. It made sense to me then. Now as I try to search out that peace and calm that only God can bring, I find it in Camp, in the hectic pace, extreme heat, suffering people, the long days, short nights, worry, the tears, the loving embraces. 


So how can it be the place I hate the most is place I love the most? It makes sense only if I know the first will be last, the poor will be rich, that I must die to have life. God’s ways are not our ways, why is that so hard to embrace?

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