A New Day

November 26, 2013

Dear Chris,08 09 family 045
The struggle for parents with a mentally ill child is sadly much the same today as it was when we fought to keep our family together years ago.
A few examples:
One day, (15 yrs ago) after 11 yr old Ben had cut up my entire wardrobe, I sat on the kitchen floor calling 43 different numbers.. each one passing me to another place. My husband had to quit his job to help with the things that were going on in our home… so the responses were “No insurance? Call here and try…” “Nobody’s bleeding? Call here…” “You wont sign him over to the state? Here…” “He hasn’t really done anything?…”

Another time I called a meeting with the school counselor, his teachers, the principal… and I actually said the words, “I just don’t want another Columbine.” To which they said, “His behavior is just fine here. A model student, we don’t see any problems. We cant do anything unless he has a specific diagnosis and plan.”

Called a meeting with 4 church leaders and their wives. “Sign him over to the state. You have given EVERYTHING physically, financially, emotionally and spiritually. None of us could have held on this long.”
We also heard things like, “If you were holier” “He will be fine, he couldn’t be in a more loving home!” and so much more…. and we had therapists quit us because he could charm the socks off from them… then talked about it with me.
He begged to be healed!

Finally found a doctor to dx him at 13… Schizophrenia, Childhood Onset Bipolar Disorder, DID, blah blah blah. They just drugged him.
Found a church who did love us well through the next few years of crisis. God’s goodness in the land of the living!

Our Ben was a precious, precocious, amazing, comical, gifted kid. He just needed very intentional attachment parenting, constant supervision, and to be taught/shown how to give and receive LOVE. We blindly did all of that, took him off the drugs and he was more clear-minded at 14 than he was his entire life.
He was then dx’d with Severe Aplastic Anemia (very similar to what Robin Roberts just went through) which was most likely caused by his year on the psychiatric meds, however, he battled that for 1 year and 5 days before passing away.
Those are just a few small instances. But when you have a child with these difficulties, the family doesn’t see the years of struggle, not the weeks of desperation, the minutes of survival, the few instances… but it is like you hear the second hand on the clock tick ticking, and wonder when will help arrive? What will the support look like?
When these shooting tragedies happen, I always think of the mother of the shooter. What were the years like as she heard the second hand clicking away and what avenues had she tried as she searched for help?
Thank you for speaking about the realities as I have never heard before. You really get it.


Million Dollar Babies

January 5, 2013

Our friends, Richy and Jessica, have a wonderful, handsome and terribly ill little boy. They have been active in ministry for Jesus Christ and advocates of children, adoption, grief support, and so much more. Givers. They are simply givers.

After our Benjie was first diagnosed with his “life threatening” illness, a nurse came in to his clinic room and said, “Hey it’s Ben; one of our Million Dollar Babies!”  With several trips to Children’s Hospital every week, blood transfusions, bone marrow aspirations, hospitalizations, surgeries,  daily home injections…. he was a million dollar baby for sure.  His year of illness was at least that amount.  We would get bills of $40,000 and $80,000 and just add them to the pile.  We had excellent insurance, PRAISE GOD, but not all was covered, and our needs were great….. God had provided in a very different way that year.

But back to precious “R2”.  He was just diagnosed with an unknown debilitating degeneration of unknown name.  They somewhat have been sent home to just love on him and watch.

If you knew these friends, you would know that they will certainly love R2 well, but they will add in FIGHT.  That is where we all need to help.

They will have doctor visits, clinic visits, treatments and travel…. and the cost is an absolute unknown.

If you have any ability to donate to help them in ANY SMALL or LARGE way, please do so at https://www.wepay.com/donations/support-the-clark-family

Do it in memory of our Benjie.  Do it in memory of your loved one.  Do it as a thanksgiving for your healthy child or grandchild!  As they care for their family and see to the challenges ahead, money is a way we all can pitch in together.  This is our way of loving them. Give to the givers.

Please prayerfully consider how you can assist them.  Every amount makes a huge difference.

Every baby is a million dollar baby, sometimes their bills just come at us in seemingly violent ways.  Thank you so much.

Victory Day Arrives

November 19, 2011

November 19th 2001. Ten years ago.

The morning began very early. Tim and I were coming from a “clean-up” from home.  Crazy how you can smile & take the steps in correct order (right THEN left…. now right again,), even though you are numb to the bones.  “Will I remember to breathe?”  I asked God for the 400th time that year.  Followed by, “breathe for me Lord.  Breathe for Ben.  Lead him well into Your will.”

We were met by Ben’s Dr.  “It is time to have a team meeting to make those crucial decisions.”  He left to get the team around.  It seemed that everything was different, and suddenly, there began a slow parade of nurses from second floor who were now coming up to visit Ben, to hug us?  They were so teary-eyed and their hugs were so tight.  Silly gals.  They were just so precious to us, and it was great to see them.   I’d say, “Thanks so much for coming up! We’ll be seeing you soon.”  I was always telling each one of them what a treasure they were, and I just thought it was so kind of them to visit.

(I wasnt stupid.  I was surviving.)

We went into the big office meeting. There sat the head PICU Dr, Ben’s amazing Hem/Onc  Dr Victoria Casteneda, the Social Worker, the head PICU nurse, another Dr, and our friend Wendy (a nurse, and  wife to our own friend/primary care Doc).  Dr started off from behind his big desk, “I promised that I would let you know when we got to the point where we would be interfering with what God could do… when there was nothing more to do for Ben.  We are there.  We were going to do a brain scan, but there is no reason to.”  There were many more medical explanations and talk of full organ system failure, and much more.  Hard decisions had to be made.

Tim and I held hands and discussed what would be happening, asking very few questions.  We were told that they would allow as many visitors in the room as we were comfortable with.  They would open another room just for extra visitors.  They would have food & beverages for our visitors.  You have a lot  of say so in how this will go.  You can make your phone calls. Here is how it will work.  Here are the possible outcomes.  He could continue on, even for days. The entire medical staff all agreed that no organ functions remain, no brain function.

First call… I called Ron’s friend Michael & spoke to him or his father to “please go get Ron at work and tell him he needs to come up to the hospital now.  It is time for him to be here, and I dont want him to hear it over the phone.  Please offer to drive him here if he needs to.”  They lovingly went & did as I requested.  Ron had worked at The Guitar Center for all of 3 weeks.

I went straight to Ben.  He lay there with new wires…. thousands of them, or so it seemed.  They were attached to his skull for the brain scan, but they just lie there on his pillow, not attached to anything else.  (He would hate what they were doing to his hair)!

Maybe the IVs were off.  Maybe some were gone. There was activity everywhere.  Lots of staff. Much scurrying.

Friends began showing up.  My mom was on a plane from Michigan.  Tim’s parents had been readied, and they began their trip up from Florida.  I stayed in my chair, stroking my son’s bare arm. Talking to him.  I stood for a while then, whispering the things into his ear that I had been repeating over the past several days. (Many details we will always hold to ourselves and keep private.  Some of those things may come out at other times.)

I told him repeatedly that he was so  courageousHe was the hero he always wanted to be.  He was the overcomer that only his story can reveal.  I knew how much he loved us, and I knew that he could feel how much we loved & cherished him.  I knew his prayers were being answered and I knew he was going to a place where we would all be.  I knew how much he knew Jesus.  They were the closest of brothers, friends & they were together.  I told him everything that needed to be said.  Every. last. thing.

The room got full of people, but Ron wasnt there in the room. He was 19;  A man to choose how he would experience this, and with whom.  (But he was ONLY 19.)  I wanted to walk him through this, and yet knew I couldn’t.  I couldn’t send his dad out to him.  We were all experiencing this freaking reality.

Some Celtic Christian cd was playing. Some prayed from scripture and some sang hymns.  Kyle Stafford, all of 15yrs old, stood opposite Tim & I, holding Ben’s other hand.  Tim & I were so close to Ben’s face talking to him, and I had a firm, mama grip on him.

The other Dr who was there with us, pronounced Ben dead.  I said out loud, “Death where is your sting?  THERE IS VICTORY IN JESUS!” Jesus won for us.  Eternity began for Ben that day.

My old life ended that day.

We were all asked to leave the room.  I don’t remember much.  Sitting in a room, smiling at others.  Few words from me.  But I made arrangements for a couple of ladies to go pick my mom up from the airport later.

After Ben and the room were all cleaned up, Ron, Tim and I were back sitting in Ben’s room.  It seemed so spacious now.  No IV poles, no machines, no staff.  Just our family.  Four of us.  Back to three of us.  I sat on the bed next to Ben & stroked his face.  His  beautiful eyelashes on his sweet Asian eyes.  I wiped his lips with tissue.  I straightened his hair… he was always pretty particular about how his hair looked!  Back to three of us. Four for so long. Plans for four. Back to three.  Just.  Three.

Someone came in and said we could have an autopsy at the hospital’s expense, and that we should discuss it.  What mama has to ever think about that?  How does someone weigh all of that?  What could it possibly prove?  He was diagnosed 1 yr and 5 days earlier.  We all agreed not to.

The Social Worker came and gave her condolences, and handed me a lovely box with a shiny green satin ribbon.  She said there were some things of Ben’s in there, and some special keepsakes.

After our goodbyes to Ben’s shell, Tim and Ron went to the house and I left with the ladies to go pick up my mom.  The ride was about 25 minutes.  What a stunningly sunny day. So bright out there, and people are just going about their everyday.  When we were at the airport, I just sat watching the passengers coming down a huge, bright corridor.  So sunny for today.  Nobody knows what this day has been for me.

“Do you want me to hold that box for you Diana?”   NO. Leave me to sit here.  I will sit and I will hold this box.  Thank you.

One friend said, “Just tell us what your mom looks like, and we can get her to you hon.”  I said she looked just like me, plus 20 years.  I then pointed at a little Asian lady and called to them “That’s HER!!!!”  We all laughed.   When my actual mom did come down the corridor, she saw me and gave her big smile, but with tears on her cheeks she said “I knew if I saw you here, that he was gone.”  I love my mom’s hugs.

In the car, she asked, “Let’s see whats in the box… what is it?”  I said, “I don’t know.  Not yet.”

At our house, we walked in and the kitchen was PACKED with foods!  Every counter had food, breads, baskets, plates, paper products for the house, phone cards, …. over. whelmed. numb.

Two friends stood in the kitchen and kindly asked each person who came in, “Can I get you something to drink?? and had them sign a guest book. Ron had already talked to our Pastor, and then he asked if we cared if he called the funeral home.  He arranged everything with the mortuary.  He stepped right up and right in.  I wanted to cope FOR him….. but he was living this too.

I sat there.  Holding the box.  so much going on now.  Someone kept trying to get me to eat.  Try to lay down.  Try to rest.  I sat. Just let me sit.

At one point, someone gave me two bites of applesauce.  It may have been all I ate that day.  Where was Tim?  Is he doing ok?  Good, he is talking with friends in the other room.  I’ll just sit here.

That was the day.  I don’t remember people leaving.  I don’t know who arrived, who spent the night.  Did we shower? Did we cry?  Did we pray?

Today, as I write this, I miss my son so deeply and so profoundly, that I just cannot imagine that there are words that could communicate this loss.  I miss hearing his name, I miss the things that could have been.  I wonder about so many things, if i allow myself to.  I miss my little Asian grandchildren that would be precious cousins to my grandsons.  I miss that my grandsons will not know their Uncle Ben, except the photos of a 15yr old boy.

Did I do enough? Did I love enough?  Did I ask the right questions, or fight the right fights? Could I have or should I have?  I don’t live there anymore.

Much stronger than any of the feelings of loss, always comes the truth of our hope in Jesus Christ.  We have our faith in an eternity where we will worship the One who defeated death and entrusted US with the young hero we named Ben.  We were given a lonely, scared, wet, wounded orphan.  We spent 13 years with him & returned him to  His Father God as a courageous, amazing, brilliant, comical, loving, and beloved young man.

If this was to be my only purpose ever, then I can say that we are ultra-successful.  We love our darling Benjie, and today I weep for fading memories, long for eternal promises and sing  praises to the One who brings the sweetest of joy and new mercies daily.

But Jesus answered them, saying, “The hour has come that the Son of Man should be glorified.

“Most assuredly, I say to you, unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain.  Jn 12:23 & 24

Countdown to Ten, Day One

November 18, 2011

It was a Sunday ten years ago today. November 18th, 2001.

After  being “forced” to go home just hours ago, I was returning to the all-to- familiar home of the Children’s Hospital.  For this past year, we had been there 3 times a week for Ben’s appts or blood transfusions, or, for admitting him.  It was barely daylight, and as I drove past the spot where just 2 days ago, Ben had crawled away from the car, I looked at the end of the road.  It was technically a dead-end.  Directly centered there, was a telephone poll covered with Kudzu (a southern ‘weed’ that took over and claimed ground vigorously).  With the sunlight “just so”, and the telephone lines reaching in both directions, it was a stunning outline of Jesus with outstretched arms!  The thought of the keys to death in His hands was overwhelming.  THANK YOU LORD.  Nothing to fear.  It would be OK.  I can think about it later.

When I got to Ben’s room, Tim recounted a story of how he had gone in to check on things around 3 or 4am.  Gary was sitting, praying over Ben with Bible open on his lap.  Tim spoke to Ben, in his ear as we had been doing the past few days.  Tim kept repeating, “Just be obedient Ben. Trust you Father and be obedient. God is letting you know what to do.”  Gary was about to leave, so Tim left to go to the dark waiting room to splash clean water on his face, and as he walked by the bank of payphones, one rang.  He answered and a voice said “Is Tim Downing there in the waiting room?”  It was our friend Bart Pederson, and he had been praying for us & really felt that God kept giving the word OBEDIENCE for Ben.  My sweet husband has such an amazingly tender heart, and this was a kiss from God for  him.

Our 15yr old son, Ben, had now been in the PICU since Friday & I just wanted him to snap to and get back to his room. With only one real chair squeezed in between his bed, the wall, and another little stool, Tim and I were just living in a blur.

There were the same sounds and smells.  People in and out.  How many times can you count the IV bags and question if there were this many before?  Did they take one away?  For just over a year, not one injection, pill or drip went into Ben without me knowing what it was, what were the side effects, and what would the outcome be?  Now, I had no idea what was going in.

This day is the foggiest of all to remember.  A few memories of the picu time, in general…

The nurses were SO COMPLIMENTARY to our family for our strength, faith & kindness.  They loved the photos of Ben I had put up the first day, because “I know you only see him lying here, but I want you to know what a happy, smiling, sweet guy he is.”

The headaches, body aches and exhaustion were ever present.

One time, as Tim & I returned to the hospital after running home to shower, there were meteorites all over the sky.  The heavenlies were moving.

The Dr, a wonderful Christian man, talked about how very “sick” Ben was.  He also said that Drs tend to overwork things and push cases so far that they can easily get in the way of what God’s plan is.  He promised us that he would tell us before they got to that point.  We heard about different organs not behaving well (failing), about them pumping Ben so full of (calcium? phosphorus?) that they could fill a quarry with it.  His kidneys were failing.  His lungs were failing.  His heart & liver functions were very bad.

Ron called saying, “I am at the house, and people are carrying our laundry away.  Our DIRTY laundry.”  ha!  We were experiencing the love of a Godly community more than we ever had in our lives in countless ways.

The other parents in the parent waiting room had a constant flow of OUR people, our prayers and our support.  Another PICU parent said to us, “You have the largest family that i have ever seen in my life!  What amazing support!”  YES!  This is church people.  This is how we love one another.