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He Read to Me

The book is called “Tim.”

Tim is sad.  Tim sits.  A van zips in.  A kid is in the van.  Is the kid a pal?  The kid is Bill.  Tim and Bill are pals.

My heart filled with emotion lying next to David as he read to me, “tapping out” each of the new words.  As we read, he began to remember the new words and did not need to tap them all out.  This boy; this boy who had to re-learn to write his name; to re-learn to form letters.  This boy who could not control a paint brush because his hands shook constantly; who seized over and over and over again.  This boy who perplexed doctors, who lay on an operating table as they removed part of his brain.  This boy who lay in the NICU after surgery, his skin was so pale, his face swollen, his head bandaged.  This boy with a scar in his hair; this boy who was so brave.  This boy read to me tonight.

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David’s Buddy Named Yan

10171144_403729636435724_208447874567327721_n[1]We met a six year old boy named Yan on our first night at the Ronald McDonald House (RMH.)  Yan pushed around a pole with fluids and other monitors connected to his body.  David, Yan and I played at the train table; Yan, circling the table as he pushed his trains around the track, dragging his pole behind him, happy as can be.  Yan and his mom have been at the RMH for a year fighting Yan’s brain cancer.

I follow Yan’s Fighters on facebook.  My heart aches for their family.  Yan loves people.  At the RMH, everyone knows Yan.  He talks to everyone.  He wants to play.  He’ll pull up a chair during dinner to join you.

While we were at the RMH, I didn’t know much about the details of Yan’s situation.  I was preoccupied with David.  However, now that I’m home, I’ve learned more about his fight.  To put things in perspective…we’ve been home from Cleveland less than three weeks.  Yan has had FOUR surgeries since we left.  FOUR!  I think his total brain surgery count is 25 or 26!

Please help me help this family.  Here is a link to a GoFundMe account set up to help pay for Yan’s medical bills.  Over and over again, people helped lift our burden as we struggled with David’s situation.  I want to help lift Yan’s family’s burden.  Will you please help me?!  Let’s make a difference!  Please donate any amount you can to help lift their burden.  Again, here is the link:  GoFundMe/Yan’s Fighters.

I am thankful to have been around Yan at the RMH; to know him and his mom; to see their strength and their courage as they battle such a difficult disease.

Yan's Fighters

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To the Woman in the Red Shirt

You must have followed me around the food court for quite a while.  I wasn’t thinking clearly.  Our first flight had been delayed and now our second flight was delayed.  I was tired.  I was worried about my boy.

I wandered from restaurant to restaurant trying to figure out what food my boy might want; what food his little tummy could handle.  I ended up down the hall, far away from my husband and my son.

I’d left them in a corner while I looked for food.  My boy in a wheelchair, a scar on his head, curled up with his blanket.  My husband, giving our boy pain medication.

I tried to hand the cashier my credit card to pay for the food.  She tried to hand me cash.  I was confused.  I looked around to see who still needed her change.  The cashier kept trying to put the money into my hand.  I asked her what it was.

She said it was my change; that the woman in the red shirt had paid for my food and told her to give me the change.

“What?  Wha…?” My voice trembled.  Tears came to my eyes.  I shook my head over and over as the reality of a stranger’s kindness caught in my throat.

I looked around, desperately looking for you and your red shirt.

I hope you saw me searching for you.  I hope you felt the fullness in my heart.

To the woman in the red shirt…Thank you.  Thank you for feeling.  Thank you for noticing.  Thank you for touching my heart though we’ve never met.

 

 

 

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Released from the Hospital

imageDavid was released from the hospital early this afternoon.  I find it amazing that only a few days ago doctors performed a major, life-altering surgery on him.  We met another boy in the recovery unit who had the same surgery as David on the same day as David.  (There are two pediatric neurosurgeons who perform resections.)

The little boy’s family is from Sacramento.  We played the “Do You Know” game and YES, we are friends with both of the people the dad knows from our town.  What a small world!  David and the boy from Sacramento walked up and down the little hallway today.  Two boys with shaved heads, horseshoe shaped scars on their heads, being supported and encouraged by loved ones to put one foot in front of the other.  A solemn and beautiful sight.

Before we left the hospital, David played in the activity room for THREE HOURS!  We loved seeing him play.  Then he fell asleep.  He slept most of the rest of the day.  But it was nice to see him have a burst of energy.

As we walked out of the hospital David said, “I was so brave!  They gave me a shot and I was so brave!”

Yes, David.  You were so brave.

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Removal of the Bandages

This morning, the doctors removed David’s drain and bandages from his head.  An emotional moment for all of us.

Visually, it took time for me to come to terms with what I saw.  My heart was heavy.  I watched other family members’ eyes fill with tears as they saw David’s head for the first time.  It was a reverent moment; looking at the incision, seeing the reality of what David went through just two days ago, feeling the significance of what that incision represents.

David does not want to see himself.  My brother and my nephew called to FaceTime with us today.  As soon as David saw himself on the phone, he swatted the phone away.

These are difficult things for a 5-year old to have to process.  His head is shaved.  He has a tough, 8-inch scar.  I think he looks beautiful.

David walked down the hallway for the first time today; daddy on one arm and Grandpa on the other supporting him.  He smiled today.  He ate food and kept it down.  He shot a few baskets into a basketball hoop from his bed.  Grandma showed him some magic tricks.  David smiled some more.

They plan on releasing David from the hospital tomorrow.  He’ll be tired, but his pain is controlled.  I think he’ll be glad to not be in the hospital anymore.  It’s amazing how quickly the human body can heal.

I’m thankful to see my boy smile today.  I love that boy.

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No More Sharks

I’m David’s paternal grandmother and a guest blogger at Welcome 2 Holland.  Yesterday, April 24, was not like any other day. It was a day of high emotion that I can only release through writing.

We were a brave little group traveling to the hospital at 6 am, but not as brave as David. His ability to live in the moment and trust the adults in his life is part of God’s provision. We waited, made small talk, and entertained David (and vice versa) before the surgery. We cried hard when they wheeled him away to surgery.

We ate breakfast while they cut into David’s skull. We checked email, played Uno, talked business, and hung on every text that came from the operating room. After four hours we cried again when Dr. Gonzales told us they’d successfully removed a rock-hard mass that was causing David’s seizures.

We gathered around David’s bed in the ICU and filled the room with our silent prayers of thanksgiving. David slept peacefully and looked angelic amidst the bandages, tubes, and machines. We didn’t have words to express all we were feeling. The unknown was now known.

This is David’s journey and I am humbled to be part of it. There are children who are sicker than David at the Cleveland Clinic, but there are none who are more precious or more loved than that little boy who just wanted the ‘sharks to stop biting his tummy.’

David, I think they got the sharks. Praise God!

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Post Surgery

One of my favorite books is “The Hiding Place” by Corrie Ten Boom.  The book tells of Corrie’s life during World War II.  For me, it is one of those important books I want my children to read and understand.

Corrie’s father often took her with him when he traveled for his watch business.  A beautiful interaction between Corrie and her father took place on a train when she was 10 years old.

And so seated next to my father in the train compartment, I suddenly asked, ‘Father, what is sexsin?’
He turned to look at me, as he always did when answering a question, but to my surprise he said nothing. At last he stood up, lifted his traveling case off the floor and set it on the floor.
‘Will you carry it off the train, Corrie?’ he said.
I stood up and tugged at it. It was crammed with the watches and spare parts he had purchased that morning.
‘It’s too heavy,’ I said.
‘Yes,’ he said, ‘and it would be a pretty poor father who would ask his little girl to carry such a load. It’s the same way, Corrie, with knowledge. Some knowledge is too heavy for children. When you are older and stronger, you can bear it. For now you must trust me to carry it for you.’

As I watch David laying in a hospital bed after his surgery, my mind keeps returning to those words from Corrie’s father.

“Some knowledge is too heavy for children.  When you are older and stronger, you can bear it.  For now you must trust me to carry it for you.”

The magnitude of what happened today weighs on my heart.  The surgery went well.  The surgeon said David did well.  No complications.  The tissue removed was notably bad tissue.  The surgeon is hopeful that this surgery will improve David’s life.  But David does not feel well.  The next week will be very difficult for him.

We never told David much about the surgery.  We simply told him that the doctors would fix some things in his head in order to help his tummy.  David never asked for more.  The simplicity of his trust in us humbles me.  He wakes up, tells us his head hurts, seeks comfort, we reassure him, he goes to sleep.  He doesn’t question “Why?”  He simply endures.

The scriptures often speak of being like little children.  I hope I trust Heavenly Father the way David trusts us.  I hope I can simply endure with patience without questioning “Why?”  I imagine, when I get to heaven, I’ll understand better the trials of this life.  But for now, I am thankful to a Heavenly Father who sent His Son to carry my burdens, to carry my son’s burdens.  I am thankful for Christ, who suffered our pains; who knows, truly knows what my son feels right now; who can comfort David with a comfort only Heaven can provide.  Yet, in His infinite mercy, allows me and our family to be at David’s bedside, doing all we can to help him to feel loved and to feel safe.

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Morning of Surgery

Waiting for surgery started like this:

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 It soon became this:

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And then this:

Grandpa waiting for David's surgery

 David wanted to show Kate his yellow socks:

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 With our surgeon, Dr. Gonzalez-Martinez.  Only one parent was allowed to go back with David to surgery until he fell asleep, thus my outfit.

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Surgery started at 7:30 a.m. and is expected to go until after noon.

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Preparing for Surgery

Last week I rode my bike for the first time this year.  One of the first songs that played through my headphones was “Beethoven’s 5 Secrets” by The Piano Guys.  Go ahead and look it up.  I’ll wait.

Got it?  Okay.  Let’s ride together.

As I rode, feeling my legs pump faster and faster, harder and harder, every door in my heart burst open.  All of the emotions I’ve held back, every bit of grief and sadness and yearning for peace and attempts to stay calm burst free like the Hoover Dam breaking into a million pieces and flooding the land below.  I gripped my handlebars harder.  My body dropped closer to the frame of my bike.  Tears streamed down my face.  I cried out in complete anguish of emotion.  A hill came and I stood up.  I pushed my legs as hard as I could.  I pushed my heart to feel; feel it all.

I let my feelings flow freely.  I felt them as deeply as I could.  I cherished them.  The physical, the emotional, the spiritual all at once.  The blood pumping, my heart pumping; I felt power and love and peace.

I stopped at the top of the hill and breathed.  My heart open and my head clear.

The next song to come on…”I Will Survive” by Gloria Gaynor.

“At first I was afraid.  I was petrified….”  Okay.

I climbed back on my bike and started moving those legs.

“It took all the strength I had not to fall apart….”  (I may have fallen apart a few times in the past few months….)

“I will survive.”  Yes, we will.

My legs started movin’ and groovin’ as I rode.  Eight minutes of hearing “I will survive” over and over again goes a long way to help your outlook on life!  Thank goodness for an extended version of that song with plenty of repetition.  After those eight minutes, I was in a nice rhythm on the road.  The future felt sunnier, clearer.

Next song…my ipod was on random shuffle and I think Heaven may have intervened in the shuffling that day…”Happy” by Pharrell Williams.

By this point in my ride, I was on a rural road with a little creek next to me.  Ducks paddled happily along.  Birds flew by singing a spring time melody.  Trees blossomed around me.  I sat up straighter on my bike.  I smiled.  I thought of my family and our life.  The more I rode, the happier I felt.

Not only will we survive this, but there is much happiness coming down the road.

We arrived in Cleveland late last night and checked into the Ronald McDonald House (RMH.)  This morning, a boy who David played with last time we visited said to him, “Hi, Friend!  Welcome back!”  We are glad to be back.

We were suppose to meet with the neurosurgeon this morning, but they postponed us until tomorrow.  So, I don’t have any specifics yet regarding David’s surgery on Thursday.  We did meet with a pediatrician for a pre-surgical check-up.  Afterwards, David had some blood drawn.  The phrase “Much weeping and wailing and gnashing of teeth” appropriately describes that experience.

After we meet with the neurosurgeon tomorrow, David has another MRI and then a haircut.  He and Tyler will be twins!  Should be exciting.

I am thankful for the peace I feel about David’s surgery.  I am thankful for the RMH.  I am thankful for the ability we have to be at the Cleveland Clinic.  I am thankful to all of those watching our other kids while we are away.  I am thankful for a surprise visit last Saturday from two people who mean more to me than they will ever know; who strengthened my heart like no one else could.  I am thankful for God’s hand in our lives.

 

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Flights and Hotels for Medical Travel

Most families with special needs children spend a lot of money on therapies, extra doctor appointments, hospital stays, service animals, medical supplies, etc.  The extra costs often result in financial hardship that is often overlooked.

The costs of flights and hotels could make it impossible for someone to receive the medical care they need away from home.  I think most people’s initial reaction to seeking medical help away from home is, “It will be too expensive.”  The generosity of individuals and businesses helps thousands of people get the medical care their families need at a minimal cost.  Let’s talk about the resources available.

FLIGHTS

A number of charitable organizations exist solely to help people fly to receive medical care.  These flights are made possible through individuals donating their airline miles, corporations offering their corporate jets and airlines donating free tickets to these organizations.  Here is a list of some of those organizations:

Air Care Alliance:  http://www.aircarealliance.org/

LifeLine Pilots:  http://lifelinepilots.org/

Miracle Flights:  http://www.miracleflights.org/

National Patient Travel Helpline:  1-800-296-1217

Most of the organizations listed above have a financial need requirement.  The income threshold for most of the organizations is low.  Don’t worry if you don’t meet the financial need requirement.  There is still hope!

Southwest Airlines donates free tickets to most of the companies listed above.  In addition, they donate free tickets DIRECTLY to hospitals.  Even though my family does not qualify for “need” according to the limits set by the companies listed above, we were still able to use the tickets Southwest donated to the Cleveland Clinic.

For me, these tickets lifted two major burdens.

Obviously, using FREE tickets lightened a financial burden during a time when costs for medical care, food, hotel, and rental car accumulated at the same time.

Additionally, when you travel for medical reasons, you often don’t know when you’ll be returning home.  The tickets provided by Southwest allow you to travel anytime they have availability at no cost.  On our last trip to Cleveland, we never knew when we would go home.  It changed every day.  Not worrying about our flight home allowed me to focus my energy on my son and his care rather than on coordinating logistics that constantly fluctuated.  When we finally knew when David would be released from the hospital, I made a quick phone call to make our reservation.  Thank you, Southwest, for removing a heavy burden from me.

If you would like to try to utilize the Southwest tickets, you can either ask your hospital for their medical concierge desk, social services office, development office or grant writer, etc. and ask about the Southwest Medical Transportation Grant Program.  They might have other resources available, too.  However, if you can’t get to the right person, you can call Southwest directly for help getting to the right person at the hospital to which you are traveling.  Southwest can reach out to their contact at the hospital and give them your contact information.  (Southwest is required to go through the hospitals to get you the tickets because of medical privacy laws.)  The phone number at Southwest for this program is  214-792-4103.  You can also make donations to Southwest for this program.  You can find more information regarding the Southwest Medical Transportation Grant Program by clicking on the link.

ACCOMODATIONS

We love the Ronald McDonald House charities!  Most major cities have a Ronald McDonald House (RMH.)  The RMH asks for a $20/night donation as long as you are with someone being seen in a nearby hospital.  If you can’t afford the $20, you can stay for free.  Most nights, meals are brought in by local families or local organizations.  When we stayed at the RMH is Cleveland, many of the meals were provided by families who had once stayed in a RMH.

We travel to Denver to see a lung specialist for my son, Will.  A private donor pays for hotel rooms at a local hotel for families visiting Denver Children’s Hospital.  The staff at Denver Children’s made all of the arrangements for us.

ASK! ASK! ASK!

If you want to seek a second opinion, if you need to travel away from home for medical care…it IS possible!  JUST ASK!  Ask your current doctor where the best surgical center is for your situation.  Ask who the leading expert is for your disease.  Ask who your doctor would recommend for a second opinion.  Ask if they work with them as a team.  Then, call that doctor or hospital and ask about the resources available for traveling from out-of-state or out-of-country.  If the person you are speaking with doesn’t know, ask them who might know.  Keep asking!  I’ve found that each hospital has different protocols and different resources available.  But resources usually ARE available.

I am thankful for the burdens lifted by Southwest Airlines and by the Ronald McDonald House.  I am thankful for individuals who donate hotel rooms and airline miles for others.  I am thankful for all of those who reach out and lift others in times of need.  Thank you for your generosity, for your kindness and for your love.

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