Kids say the darn'dest things...

Adults say really stupid things...

Henry was sick from the very first day that he was born.

All of his doctors knew that he had a traumatic birth, but few people listened when I said, "He throws up all the time." or "He cries all the time, and I can't help him."

"Babies spit up."

"Babies cry."

We knew this. Henry wasn't our first child. I have several younger brothers and sisters. I gladly held babies, all babies, my siblings, cousins, strangers and even loud and cranky babies - until I was about 17 years old. I understand babies. They are all different, but they all speak the same language.

Henry would cry.

In the car. (An officer that pulled me over said "Uh, your baby's crying ma'am." "Yeah, just hurry up and write the ticket please!")

In the house.

At night.

In the morning.

At the supermarket. (People feel like they have to say something - "You better feed that baby!" "Shut that F*CKING baby UP! You stupid piece of white trash!" "Oh, is he hungry? Does he need a widdle foody woody?" "You listen to Grandma G! You better feed that baby or I'll shoot you!" "Have you tried burping him?" 

At Terry's Diner. "Somebody better shut that baby up! I just had surgery! I can't take it!!" (If you've just had surgery - maybe you should shut up and go home?)

At the doctors office. "Babies cry!" "Welcome to parenthood!"

At Grandma's.
At The Saturday Market.

At the park.

At the beach.

At the Aquarium. Glare - Glare - Glare - Scowl 

In his stroller.

In his swing.
At the office where I worked. "God, is something wrong with that baby!?"

In his bouncy seat.

On the dryer.

In my arms... 

It didn't stop until 15 months ago.

Three solid years of crying.
Sometimes I'm pissed off with God.
"Why did you gift us this child and not provide the tools to help him?"
And then I'm pissed off with myself.
"Why can't I be grateful for the times that were fun and happy - instead of pissed off about the time that we lost?"

He's sleeping now. Sweetly - but I know it's because of his medication, or the exhaustion from his 4 hour barf-fest yesterday. His color is better today, but nothing like last summer when we were getting a good layer of freckles built up on our noses and arms. Now he is very pale. He 'looks sick'.

When Henry was born, I had hoped that he would be playing T-ball by now.

"Winter is Coming..."

How do you respond when someone asks how your family is doing?
I don't want to lie.
I don't want to be Debby Downer either.

"Henry's in Hospice."

The statement gets all kinds of responses. One, like today - is immediate understanding of the gravity and magnitude of the statement, an understanding of all the things that go along with the word - hospice.
This is from experience. I might see a flash of emotion, but gratefully they have learned to quell the sadness, at least until it's clear that I'm ready for it.

Another response is confusion. "Why? What's wrong with him? Will he pull through?"

Ugh... Hope has been a four letter word in our house for about four and a half years.
Just when we allow ourselves to look forward to something... hope is dashed against a stone along with our hearts.

I hate being the one to say. "No. His diagnosis is terminal."

Some folks don't understand how something like 'terminal diagnosis' could apply to such a little one.

<Noah gets irritated with me sometimes, because I am a bit of an optimist. He says, "You think that just because it's not the Holocaust - it's not bad."

I know it's bad. I know we're in the grip of transition that we don't want or approve of.
But that's life... a bunch of chaotic events that add up to our experience. Sometimes they make sense, but usually it's up to us to make sense of the mess... I won't even be trying to puzzle out this shit for a while!>

And then there's "Oh, I am so sorry. What can I do?" Followed by teary eyes and a hug. This is the most dangerous response. If I cry now... I may never stop.

Winter in Westeros is not measured by months. It's unpredictable... it can last years - it can last a week.

Our winter is on it's way, I already feel the frost. A week of snow is manageable, but I suspect we will be cold for a long time.

"Who would have known how...

...bitter sweet this would taste."


Thank you Adele

Henry loves Adele. Very few things make Henry happy, as often as Adele. He loves Train, and C-Lo and other top 40 selections, but nothing consistently calms him from a crying fit quite like Adele. Twinkle Twinkle Little Star is a favorite too, just ask his teachers!
Henry also loves the laugh track on Two and a Half Men. He always laughs with it. We get to see a lot of laughing during a Two and a Half Men marathon occasionally!
He loves the applause on Wheel of Fortune and The Price Is Right. He laughs with it! And for about 3 months, Henry loved Phineas and Ferb.

Henry doesn't have many ways to communicate. Laughing, smiling, crying and grunting are about it. So anytime we discover something that makes him laugh, we are pleased and encouraged that we may have a new way to share the world with Henry.

Henry spends a lot of time locked inside of himself. We know he is in there, but have had a difficult time engaging him. There are a few activities that we know he likes, and these are what we go to. It's difficult to introduce new things. He doesn't see or have the ability to deliberately touch. He has learned how to trigger a button to make his teachers sing (recording), or to trigger another rendition of Adele's "Someone Like You"...

This thing... this hospice thing.. this thing where my son is sick... this thing where everyone is sad and sorry... I hate it. Truly and completely. I am having trouble finding the purpose. Henry has struggled for everything that he has, and he doesn't have much.

I suppose this is the part where I admit that I am angry. A deep, gripping anger. An anger that endures laughter and hugs, out lives the bag of licorice, resists the tenderness of my beloved, and anger that lies in wait for an opportunity to attack - and no one is safe.
I suppose this is the part that I admit why I'm angry. I'm angry for never seeing Henry walk. For never seeing Henry hold a spoon. For never seeing Henry proudly present a finger painting. For never seeing him crash his cars together. For never getting a hug from Henry. For never hearing Henry ask for a kiss or a story or some ice-cream. For never hearing Henry tell me about his new friend at school. For never watching him walk away, independently toward the next adventure.

I am angry that he has struggled for so long, to grip and grasp at small pleasures while enduring pain and complete dependence. I am angry that the small successes have taken so long to accomplish that we are unlikely to see many more.

I am angry that my son is sick, that he won't survive.

I'm angry that I have no control.

I'm a woman. When I am angry I respond with a sharp tongue. I respond with tears. Stinging hot tears that can't stop this constant current of helplessness that is flooding my life.

I'm angry. So, I talk about the things Henry loves. Henry loves his sister's voice. Henry loves when Lewis is scolded loudly. Henry loves when his daddy holds him and tells him stories in a deep rumbling voice. Henry loves when Zane sings to him.

Events

If you would like the pdf file please email me or leave a comment.

The ladies from our local Etsy Street team have organized a fundraiser for Henry! Please print out the flyer and bring it in when you order your pizza. 50% of the proceeds go directly to Henry's account!

We are planning a celebration of our marriage. Our wedding was scheduled for June 23rd, but due to the nature of Henry's status, we had a simple ceremony in our home with our children and friends and family. We would like to invite those of our friends and family that would like to join us, in a celebration.

June 23rd from 11am - 1pm.

Petersen Park Barn

870 Berntzen Rd Eugene Oregon 97402

We will have lunch and music.

Everyone is welcome.

Twinkle Twinkle...

...Little Star...

Jenn, Henry's teacher came over on Wednesday. She brought lots of fun things for Henry to play with, including a big red button with a recording from all of his teachers.

He must have pushed the button a hundred times on Wednesday. Laughing and kicking while the ladies sang.

On Thursday, Casey came and checked Henry's vitals after we had a pretty rough night. Henry had been in pain and sleepless. We determined that Henry's infection was causing a decline and that his end would be sooner than we originally thought. We made phone calls, gathered our family and friends and monitored Henry's vitals for more evidence of his condition.  His vitals were up and down and up and down all day. Weak heart rate, fluctuating temp, slow respirations.
His teachers came, sang Twinkle Twinkle little star and a couple of other of his classroom favorites. Heart breaking and bittersweet. My sweet boy slept while they surrounded his bed and celebrated his love of music.

Because Noah and I were uncertain of how long we would have Henry, we prepared a civil ceremony with the Hospice chaplain, Rebecca. We had set the date, rented the venue and secured the catering and flowers just the day before. Our plans always seem to be a waste of time. Luckily we had the presence of mind to waive the waiting period for the marriage licence. and were able to get married without much going wrong. It wasn't a typical wedding. Vigils and weddings don't usually coexist, but we wanted Henry to be a part of it. We shared our vows with a house full of people, some were strangers to us, but all of them loved Henry. The dog howled from the bathroom, the little kids played with pom poms and yelled out funny things while we exchanged our promises for a lasting and life long love. We laughed, cried and laughed again.
Friday we saw Henry plateau. Low respirations and weak heart rate stayed the same. He continues to decline, but at a slow rate. We are monitoring his temp and vitals on the hour.

We have so many people to thank. We are grateful for all of the support. Financial support, emotional support and the constant stream of food being delivered. We have felt like we were on an island for so long, it's strange and overwhelming to be on the receiving end of so much love and kindness.

We want to say a special thank you to Casey for sticking with us and for answering our questions. We'd also like to thank his wife and children for sharing him with us. We are grateful and understand the sacrifice.

Anastasia, Zane and Lew are a here too. Not wanting to leave. Not wanting to miss anything. It's a stressful and bitter time. They are wise little people. Cuddling up with Henry in his bed, singing songs to him and trying to soak up and give as much love as possible. They are brave and sweet. Thank you to all of the lovely people who have shown up for them too. Thanks for loving my children through this.



There are a few events planned, for fundraising and celebrations. I will post another blog with all of the info for those by days end.

Today.

Is Tuesday. Henry slept last night. We finally found the correct combo of meds that help relieve his pain. We can tell that he has some swelling in his abdomen. But we aren't certain how the infection is spreading.
Zane asks smart questions about Henry, when I pick him up from school. Anastasia is tender and wise. They are both well adjusted kids, having a terrible experience. They love their brother. They don't want to see him in pain.
"The bed is sort of scary," Anastasia said upon seeing Henry's hospital bed. "but I see how he needs it."
We set it up in the living room. Not a normal place to set up a bed, but it's the center of our house, and Henry, right now, right or wrong, is the center of our family.

We are so grateful to the folks at hospice. We have learned that many of them have never worked a peds case. That they have children of their own. They are all loving, kind, supportive and compassionate. We mentioned wanting to get married before Henry passes - so Trevecca is now our 'Hospice Wedding Planner'... Everyone at the hospice office, even people that don't have direct contact with our case - are pitching in to help get us married quickly and with some celebration. We should have more details, when where and what-not this afternoon. Our friend Liz is hoping to do the music. We're trying to secure a venue, the rings, and a dress this week. The food and cake are taken care of. We have our ceremony itinerary in rough draft, and the wedding favors are already being made. We had planned a ceremony for August - bumping it up a few months has eliminated the need for all of the extras, but has complicated a few others... It will happen though. Everyone is welcome to join us, where ever it happens.

We have been experiencing a great flood of love and support from our friends and family from all over the world! It helps us stand up straight, move through this with courage and grace and relieves our feelings of loneliness. Thanks to my mom and to my baby cousin Jess for taking care of Lewis and distracting him from all of this. 
We have folks bringing us food. You can sign up to drop off something, or have something delivered too. 
~Elizabeth has set up a sign up sheet online. Sign up HERE.
~Our friends Rose and R are organizing fundraiser at Papa's Pizza. More info will be posted as we get it.
~Our friend Christine felt moved and has made some beautiful candles and is donating the proceeds to Henry's fund. You can preorder through this LINK. <3 I think she has 2 candles left.
~Our friend Fred challenged all of his friends to buy out my shop. He's reduced my stock by about 30%. He's giving them until Friday! It's sort of fun to watch people get excited about feeling useful - until it hits me why they feel the need to be useful. If you want to help Fred sell out my shop HERE's a link! 
~And if you feel the need to donate cash, we have set up a bank account. You can reference Henry Kaplowiz, or Rebecca Fitkin or the account # 521758 Selco Credit Union members can go online. Other folks may need to go into a branch, but I think folks can call and wire a transfer from their bank accnt to Henry's accnt. 
~You can also make direct deposits to my Paypal. tritegreen @ gmail.com (remove the spaces)

We are so grateful for all the outreach. Our hearts are breaking for Henry and our family but our friends are keeping us enveloped in love and kindness. 



I asked Zane how he feels about everyone reaching out to us, "It makes me want to help them, to help other people like us." We already have a few plans for paying it forward. Thank you for inspiring generosity in our children and expanding our hearts.

"Why is everyone being so nice to us?" "Because people feel helpless to help Henry. They love us and want to make this as easy as possible. Because they see themselves and are suddenly grateful for their own health and the health of their children. Cards, emails, money and food are easy ways to show their support and love." "Makes sense."

Our friend Staci has been sharing Henry's story with her children. One of them took it to his classmates. They all painted and drew pictures for Henry. We'll be hanging them up in our little red house. 
If you want to send Henry a picture, he likes bright colors - The sun and rainbows are easy for him to appreciate! 

Much love.