Author Archive | Trish

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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Spousal Relationships when Dealing with Special Needs Children – Part I: Grief

Grief Special Needs Child 2I remember laying in bed the night the doctor diagnosed our son, Will, with lung disease.  Earlier that day, the doctor informed us that our son would need oxygen 24 hours a day.  He told us that doctors did not know much about the long-term affects of the disease.  The disease had only been “discovered” about 10 years earlier.  That day, our son’s future suddenly became unclear.

As Tyler and I lay next to each other, staring at the ceiling, with tears running down our cheeks, we talked about Will’s future.  Our conversation went something like this:

Tyler: “Well, I guess he’ll only ever be able to play golf.”

Me:  “No way.  This might not look like what we expected, but Will is going to be fine.”

We still shed tears and worked to adjust to our new future, but my adjustment seemed to happen more quickly than Tyler’s adjustment happened.

Fast forward six years…I walked down the hall of the hospital right after finding out that David’s “episodes” were seizures.  I felt hollow.

After the diagnosis, each time David had a seizure, I freaked out.  Gasping for breath.  Panicking.  Crying.  I could not handle knowing that seizures consumed David.  Panic attacks hit me for weeks.

HERE IS THE IMPORTANT PART…how did Tyler handle David’s diagnosis?  COMPLETELY DIFFERENTLY than me.  Tyler’s heart stayed calm. He kept saying, “Trish, it’s going to be fine.  David is going to be fine.”

With Will’s diagnosis, I had an easier time coming to terms with it than Tyler.  With David’s diagnosis, Tyler had an easier time coming to terms with it than me…and that is okay!

WE GRIEVE DIFFERENTLY!

I’ll never forget Aimee talking about how she and Ryan had to GRIEVE when Tex was diagnosed with autism.  I had never thought about the fact that Tyler and I had grieved over Will’s diagnosis.  Recognizing our grief made a big difference for me.

I think it is important to understand that grief is a MAJOR part of receiving a diagnosis for a special needs child.  Grief does not just happen when someone dies.  Grief happens when there is a LOSS.  With a diagnosis that your child’s future looks differently than what you expected, grief comes.

I remember Aimee talking about how she and Ryan each grieved DIFFERENTLY with Tex’s diagnosis.  I immediately thought of how Tyler and I reacted differently to Will’s diagnosis.  Suddenly recognizing that our reactions that seemed so different, our view of our son’s future that seemed so different, our ability to move forward that came at different times, recognizing that all of those things translated into Tyler and I grieving in our own ways made everything so much better!  The times Tyler and I felt frustrated with each other because we did not understand why the other person said or did or felt differently…it was all because of grief!  We simply needed to grieve and everyone one of us grieves differently!

I’m no expert on grief.  But, for me, the road to getting through grief started with recognizing that Tyler and I WERE grieving.  For me, RECOGNIZING that Tyler and I were grieving helped me take a step back.  Recognizing that we grieve differently helped me love my husband even more; it helped me want to love him THROUGH our grief instead of feeling frustrated that he was not handling it like I was handling it.  At the same time, when it came time to grieve for David’s situation, recognizing that my grieving process took more time, that it felt desperate, helped me communicate my sadness with Tyler.  It helped us grieve TOGETHER even though we grieved differently.

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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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No, David!

No, DavidHave you ever read the book “No, David!” by David Shannon?  The author wrote and illustrated the book when he was five years old.  Each page shows a picture of him doing something he was not suppose to do, with the words “No, David!”

I keep thinking about that book as David recovers at home from his surgery.

“No, David!  Please don’t climb on the counters.”

“No, David!  You cannot climb the tree.”

“No, David!  Please get off of your bike.”

“No, David!  We’re not going bowling or swimming.”

The doctors told me many times that I would be surprised by how quickly David would recover from his brain surgery.  I envisioned a quick recovery as two to three weeks of him sleeping most of the day, playing a bit with the other kids, but mostly just observing.  I could not have been more wrong!

We arrived home late Tuesday night.  David woke up at 7 a.m. on Wednesday with his older siblings.  He started bustling around with them like any other morning getting ready for school.  He asked if he would be able to go to preschool that day.  He started climbing the counters to get some dishes for himself.  He wanted to play baseball and golf.  Truthfully, I about died from anxiety!  I kept envisioning him accidentally getting whacked in the head during the excitement of being back with his siblings!

As soon as his siblings left for school, he walked back to his bed and slept for FOUR hours!  Then, he woke up and started playing again.  It was crazy!

I can’t believe how well he is doing.  It is difficult to keep him down when the other kids are at home.  He still tires quicker than normal and he’ll fall asleep within minutes of the house being quiet.  But, he is happy and quickly working up to his normal pace of life!

David has not had any seizures since his surgery.  He seems to be calmer than before, too.  The neurologist said he is not surprised that David is calmer.  He described David’s brain (pre-surgery) as a “fire storm” of electrical activity.  Now, David’s brain seems quieter.

David will stay on all of his regular anti-seizure medications for a long time (1-5 years) to make sure his brain stays seizure free.  If, over time, David stays seizure free and if his EEGs show that there is not seizure activity, then we’ll be able to possibly wean him from some of his drugs.  But we have a different boy than we had before surgery and we are SO, SO thankful.

We are thankful for modern medicine!  We are thankful for the prayers of so many; for the hand of God; for the miracles we’ve seen.  Mostly, we’re thankful to see a calmness in David’s eyes.

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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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Post Surgery Joys

I know I’ve talked about how beautiful David looks to me right now.  He does not like seeing himself in the mirror, so out of respect for him, I won’t post any pictures of him right now.

David’s day started off a little rough.  He could not keep anything in his tummy.  We washed a LOT of laundry this morning…more than once.

I called the nurses to get their perspective on David’s morning.  They said this type of thing often happens when kids are released from the hospital.  So, his episodes today were fairly expected.

After sleeping almost the entire afternoon, David woke up ready to play and ready to eat.  Now he won’t go to sleep!

We fly  home tomorrow.  I’m sure we have some more rough days ahead, but right now, I’m thankful to be going home.  I know David will love seeing his siblings again.

Thank you to everyone for your prayers, for the meals, for the little gifts and cards for David, for the support and for the love.

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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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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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