Hello Darkness, My Old Friend

It's daddy posting...
The good.

Last week it felt like spring, and that means spring cleaning. So like most dads I called on Isaac. "Isaac, my boy, we've got to go clean the garage." He looked at me like "what dad?"
Out in the garage we cleaned and organized tools for near future projects around the house. Grouping everything by project. Isaac, grasping two bright, shiny, three inch screws, was happy to be involved. I showed him all the tools as I was putting them away and explained what they were and what they could do. Isaac was interested and talked to me in his little Isaac way. After a while, like every other boy helping his dad clean the garage, Isaac whined as if to say "dad how much longer?" I finally let him go. I pushed him outside to where mom and big sis where planting flowers.
That's my boy. Perfectly normal, except for the fact that he can't move and needs all these machines to stay alive. Sometimes I can almost block the machines out, but I'm glad they are there when things go south.

The bad.
The last few months have been bad in the battles with SMA. We've lost Gwendolyn and Holly. I will not even pretend to know how their families feel or what they are going through. Yes it's true that Isaac has the same disorder, but I am not the same parent or person as them. No one is. No one can feel their pain and loss. All I can say is that I feel sad.

The scary.
After spending time outside with the family, Isaac's nose dried up. We don't have portable humidity for him. Therefore one of his morning treatments started to go bad. Isaac got a bloody nose. After I wiped the blood from his face and we aborted the treatment, we waited for a few minutes until the bleeding stopped.
This prompted me to call the medical supply and inquire about portable humidity. The cost would be about $400 and take a few weeks for modifying the stroller. Instead I went into the garage and gathered materials and tools. I'm happy to say that after a short time of thinking and testing, I've modified and powered Isaac stroller up to have everything he has inside the house. This will help everyone. Isaac will have his humidity and capability to use other powered machines on the go. It will help Jenna and myself not worry... And we are staying "one step ahead."

With the death of Gwendolyn and Holly, and Isaac's bloody nose, the inner stress has gone up. I'm not sleeping at night. I lay there in bed and thoughts go in and out of my mind and I frequently find myself, without meaning to, mentally reciting Isaac's eulogy. "Hello darkness my old friend..."

More saints are coming to aid...Jack and his wife and his crew at Highland heating and air. Awesome is the only word I have.
The saints are all great, but when the darkness falls and I'm all alone, I must face my demons.

My song, I like the Disturbed cover.
"The Sound Of Silence"
(originally by Simon & Garfunkel)

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains within the sound of silence

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp

When my eyes were stabbed
By the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening

People writing songs
That voices never share
And no one dare
Disturb the sound of silence

"Fools," said I, "you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you."
But my words like silent raindrops fell
And echoed in the wells of silence

And the people bowed and prayed
To the neon God they made
And the sign flashed out its warning
And the words that it was forming

And the sign said,
"The words of the prophets
Are written on the subway walls
And tenement halls."
And whispered in the sound of silence

It's daddy posting...
It's been a long time since I've posted.  In the last few month I've made peace with my God, demons, Death, and myself....sort of. (I say sort of because I still don't like the situation, and I still hate SMA). I know that we all want something, for different reasons, but we are all willing to fight until the end. I respect that. I've found a kind of peace because if this were a real boxing match, and the referee stopped the bout right now, Isaac would be declared the winner by the judges. Isaac's prognosis was 8-9 months. He's now 26 months. Surviving 8 code blues, dodging RSV, the common cold, germs in general... All of that in my mind is a winner. I know that the war will be lost eventually, but the battles that have been won, as a family, over SMA, make us all winners. Another confirmation was the birthday party that we went to. There were 3 SMA type 1 kids there including Isaac. Both of the other kids were much stronger and had much more movement than Isaac. They were all on ventilators but the others were not on oxygen. Isaac is so weak compared to them, but he's still here, he's still alive. He is a fighter!  He is a winner!

This new perspective has given me some peace. This peace has given me more quality time with Isaac. Last week I was holding Isaac on the couch and we started having a fist fight. He laughed so hard and loud every time he punched my nose that Jenna could hear him in the shower. When Jenna came out of the bathroom she had the biggest smile on her face because of how happy Isaac sounded. I haven't seen Jenna smile like that in a long time.
I brought home a kite a few weeks ago. I got it up in the sky and handed off the string to Isaac. It totally blew his mind, seeing the string wrapped around his hand, extending all the way up to the bright red kite in the sky...
A couple of months ago the battery went dead in the Subaru. I went to town, bought a new one, came home and said "Isaac got a new battery. You gotta come help me put it in the car."  The nurse just smiled. I said to her "no seriously, he's my boy and he's got to hand me tools and learn how to do this."  Out in the driveway, with a little wrench in his little hand, he wouldn't take his eyes off the car with the hood open. I explained everything, and he talked back in his little Isaac way.
Isaac and I have been doing more things like this together, these were just three examples that came to mind. I've been able to do these things with Isaac because of help from my saints.
Going to church there seems to be a lot of talk about the saints.  I never really got it. I'm sure the nuns and popes were great people and did great things but I never studied them or knew them. However I want to talk about my saints. The ones I know and the ones that help me.
Jenna. For unending care, even when she is so tired she can't talk coherently. Saint.
Nurse Jessica. So intelligent and caring and loving when it comes to Isaac. Saint.
Richard, Isaac's medical supply rep who called me 90 seconds after the power went out. "Do you have power? How much oxygen do you have? Are all his batteries charged?....." Saint
In the very same minute a woman from the city of Mead called "Did you lose power? Is Isaac okay? Here is the direct line to the firemen if you need anything." Saint.
Nancy and Dave. For more than two years now they bring us home cooked meals every single week. Saints
Of course all the staff and team members at Children's hospital. To many to name but they know who they are. All saints.
Grandma Bonnie and grandma Sharon. They can always calm Isaac down when he is upset. Saints.
Grandpa Roger. He's always got my back. Thanks to him and his gas generator, Isaac had electricity when the power went out. Saint.
The Mead firemen. 18" of snow drifting to 36," no power in town, both highways closed, we called them. "It's not an emergency but we need gas for the generator."  All they said was "Unleaded or diesel? Be there in 30 minutes." Saints, all of them.
My doctors. My PCP, my "shrink," and my concussion specialist. For "knowing" my situation and how hard I'm trying, and how hard they are working to back me up and help in every way they can. Saints.
Mike Grills my lawyer... Saint.

Friends, family, people from town, church, and around the world. People giving money, support, food, love. So many people I can't name them all and frankly I don't even know them all so I can't name them.  Saints.

Isaac, me, and my family are in the best place we could  be because of help from all of my saints.

Now for my song by Disturbed. "The Light"

Like an unsung melody
The truth is waiting there for you to find it
It's not a blight, but a remedy,
A clear reminder of how it began
Deep inside your memory
Turned away as you struggled to find it
You heard the call as you walked away
A voice of calm from within the silence
And for what seemed an eternity
You wait and hoping it would call out again
You heard the shadow beckoning
Then your fears seemed to keep you blinded
You held your guard as you walked away

When you think all is forsaken,
Listen to me now
You need never feel broken again
Sometimes darkness can show you the light

An unforgivable tragedy
The answer isn't where you think you'd find it
Prepare yourself for the reckoning
For when your world seems to crumble again
Don't be afraid, don't turn away
You're the one who can redefine it
Don't let hope become a memory
Let the shadow permeate your mind and
Reveal the thoughts that were tucked away
So that the door can be opened again
Within your darkest memories
Lies the answer if you dare to find it
Don't let hope become a memory

When you think all is forsaken,
Listen to me now
You need never feel broken again
Sometimes darkness can show you the light

Sickening, weakening
Don't let another somber pariah consume your soul
You need strengthening, toughening
It takes an inner dark to rekindle the fire burning in you
Ignite the fire within you

When you think all is forsaken,
Listen to me now
You need never feel broken again
Sometimes darkness can show you the light

Don't ignore, listen to me now
You need never feel broken again
Sometimes darkness
Can show you the light

They always talk about those April showers...

We are getting a little bit of rain as I write this.  Jeremiah had just thrown open all of the windows, and now we are letting the breeze air out the house and destroy our, um, neat piles of papers on the table.  Isaac is playing a memory game on his talker, and talking to it with little sleepy squeals as he plays.  We have had an exhausting few days.  After Isaac came down with the stomach flu, his digestion slowed down almost to a point of stopping.  By Tuesday morning, his tummy was still so bloated from the small about of formula and pedialyte that we couldn't hydrate him any more.  So his nurse and I packed up to head to the ER to get Isaac some IV fluids. Jeremiah stayed home with Natalie because she had dance class and we had an electrical inspection scheduled.  I'm so grateful the nurse was able to come along, even though that meant a 14 hour shift for her.

We left for the ER at 1:00 p.m. on Tuesday afternoon and didn't get home until 10 p.m.  The phones and internet at the hospital were down, so the doctors and nurses and EMTs and respiratory therapists, etc, were all communicating via the scarce walkie talkies.  We had several people stick their heads in our room looking for someone who wasn't there, or to deliver a message to someone who was.  At one point, an EMT left to go find someone to help him place Isaac's IV.  Not long after, two more men arrived to place, one of whom successfully placed the IV by some vein whispering magic (he didn't even look at Isaac's arm while he felt for a vein- it was incredible).  Just as it as placed, the original ENT returned with his friend, not knowing that someone else had arrived on the scene.  Overall, I was impressed with how smoothly everything went despite the lack of telecommunications.  Everything took much longer than it normally would have, but in the end, we brought our exhausted selves home to an exhausted Jeremiah who had an exhausted Natalie who refused to go to sleep without seeing Mommy and Isaac.  She was concerned because I had told her we were taking Isaac to the doctor, and 'you can't sleep at the doctor's office.'  Isaac slept much better that night, but his tummy was still bloated and uncomfortable.  He spent most of Wednesday napping and watching cartoons, with about 15 minutes of energy for his penguin toy and his talker.  As of this evening, his digestion seems to be speeding up enough to at least avoid the hard, bloated belly.  We are still running his food at a very slow rate, and it is 'watered' down with pedialyte.  Tomorrow we will transition to a more normal formula to help him get his energy back.

Through it all, Isaac has been such a trooper.  I didn't realize quite how easy going he is until this past weekend when he felt so awful and wasn't up for his normal routine.  Usually, when we ask him if he wants to do something, he tells us "yeah" in a very happy, excited sounding tone.  This weekend, I asked him if he wanted to go outside, and his response was a tired groan. He laughed a few things today, and played some games with his talker, including his new "hide and seek" page.  We took a short walk over to the co-op in town to see the chicks and ducklings, and Natalie got to hold a chick for Isaac to pet.  He was interested in it, but still not quite his usual self. He went to sleep so early and easily tonight, and I hope that bodes well for the rest of the the night!

In other news, a friend of ours has come up with a way to help us financially.  It's basically an online grocery store (think center aisles, not produce or refrigerated), and whenever people shop we will receive a percentage of the sale.  She is doing an overview of how it works next weekend, Saturday April 23rd, in Longmont.  If anyone is interested in some more details for that day, please call, email, or send me a Facebook message.  If you somehow don't have any of that contact information, just comment here on the blog!  

Please continue to pray for Isaac, Natalie, and for us.  And please pray for my friend Renee's father, he received some scary health news this week.  I also want to thank everyone who continues to support us through prayers, meals (Nancy and Dave!!), friendship, and financially.  We are sometimes staggered by your generosity!

Until next time, keep on roaring!

What a Week

I'm sitting here at the table, with Isaac napping about 10 feet away.  He has been sick for the past 12 hours, throwing up formula every few hours, even though we have been feeding him very slowly (about an ounce an hour through his feeding tube).  Last night, I thought it was just that he was having reflux from needing to have his tummy vented, but after he did it a few more times, we decided it's more likely a stomach bug.  Damn.

Two days ago, my best friend's grandfather passed away.   It was a peaceful death, and one that had been looming for months.  Still, I was so grateful that Isaac slept comfortably that night, leaving me free to talk on the phone with my friend.  Usually he wakes 2-3 times during his first few hours of sleep, getting comfortably before settling in.  When I finally went to bed, I was pleasantly surprised to see that his oxygen saturation was 100%, and his heart rate in the 80s.  Here in Colorado, O2 saturation of 95% is considered great, and Isaac usually hovers right around there.  My first thought was 'Isaac, you are such a rockstar!'  My second thought was "I hope this isn't the calm before a storm."  Then I scolded myself for being pessimistic, certain that it stemmed from the news that another friend's daughter was sick with a fever (she also has SMA), and that yet another friend's little girl had just passed away at the age of 2 1/2, from complications due to SMA.  You hear about friends and family whose children are ill, and I know that when an otherwise strong and healthy child gets sick, it definitely puts a wrench in your day or week (or month), but you have no reason to worry that this could be the beginning of the end.  Jeremiah and I are confident that Isaac will feel better in a day or two, but we really never know.  We spent yesterday afternoon outside, Jeremiah painting the garage, me clearing out our shed, Natalie playing in the sandbox, and Isaac reading books with his nurse. I received the wonderful news that a friend had delivered a healthy baby girl.  Isaac's other nurse also delivered her baby last weekend, a healthy boy, four weeks early and just perfect.

Natalie was on spring break this week, and I wasn't needed at work, so we took advantage of the beautiful weather and went to the park, to the zoo, had some preschool friends over to play, and got a lot of spring cleaning done.  My dad arrived in town last night, and he has taken Natalie to run errands while Isaac gets some rest.  Jeremiah and I are so accustomed to running on fumes that our pieced together 2 hours of sleep last night hasn't hit us yet.  So we sit, we care for Isaac, we think about Holly, who passed away, and Magnolia who is just starting a beautiful life on the outside, we think about their parents, who are in such different places.

Please pray for Isaac, that he quickly recovers from this illness, and for Jeremiah and I, that we care for him well. Please pray for Nella,who has also been sick, and for her parents who must also be exhausted.  Please pray for Holly, who is home with God, and for her parents who are feeling everything so acutely.  Please pray for Magnolia, and her parents, as they start their new life, and for Isaac's nurse and her new family.  Please pray for the Bush family, as they lay Grandpa Bush to rest. And please pray for my friend's father, who will hear soon the results of a biopsy.  Pray for another friend's son, who is only two and may have fractured his leg and be stuck in a cast for a while.  And pray for my father, for his safe travels this week.

Thank you all, and God bless you this Easter season!