...Jeremiah was staying the night at the hospital with Isaac. My aunt and uncle had driven me home. I was in a stupor. I hadn't slept, I couldn't eat. I felt sick, raw, empty, numb, shocked. I had spent the entire night keeping vigil over our little baby boy, who had almost died the day before in Jeremiah's arms. What was wrong with him? Why was he so weak and underweight and sick? I had spent the entire morning talking to specialist after specialist, answering the same questions over and over again. By the time Jeremiah arrived in the late morning, I really felt like it had been days since we had brought Isaac to the ER. Looking back, it still feels impossible that only a few hours had passed between the moment that I started to think Isaac might spend his long life in a wheelchair to realizing that he had a terminal diagnosis. We had been told that afternoon, two years ago, that Isaac had "a very significant diagnosis." That Isaac had, more than likely, only a few months to live, maybe a year. He was very weak. One of the weakest they had seen with this type of SMA. I sat, barely breathing, on that PICU room couch. Jeremiah was immediately at Isaac's bedside, crying "My boy, my boy!" My aunt was on the phone to my mother, telling her to come.
I have heard Isaac's story repeated over and over again on the SMA support groups. Newly diagnosed families being told that their child is so weak, they may not make it home from the hospital, they may not make it a year. But then, like Isaac, those incredible fighters and their incredible families get it together. They start to breath again, to take on their lives as they now are. Last spring, I asked God to give us just one more summer with Isaac. Last September, Jeremiah and I thought Isaac was ready to go, and we said our goodbyes. Yesterday, I took the kids to a concert in the park. Jeremiah and Isaac snuggled on the cough. Today, Isaac and Natalie and I played with a box of insect crafts. Jeremiah and I laughed as Isaac held onto a toy knife, wriggling his wrist along as the chef on a cooking show chopped some vegetables.
It is easy to look back on that diagnosis day, to feel bereft and broken all over again. A few moments of thought and that knot hardens in the pit of my stomach. The memories of those emotions become more vivid than my memories of this morning, and they become emotions again.
We have lived for two years now with a daily life full of Natalie's songs and laughter, Isaac's giggles and switch toys, and a home invaded by equipment, nurses, therapists, case workers. It requires planning, patience, and commitment to get out of the house with both of our kids. We have managed, with the help of family, friends, neighbors, and strangers to pay the bills, make some improvements on our home, and have food on the table. We have become a very close family, sacrificing more than I think we otherwise would have for the good of one another, for the sanity of one another, for the sake of one another. I may not say enough how grateful I am for Jeremiah's strength and patience and sacrifice. I may not say enough how much joy Natalie brings me despite how often I have to tell her to put on her shoes and brush her teeth. I may not spend every moment that I have with Isaac to the fullest. But I love my family so much that sometimes it hurts. Sometimes it doesn't seem possible that I get to spend my life with these beautiful people. So I want to thank them, as I often thank the rest of you. Jeremiah, Natalie, and Isaac, thank you for making me the wife and mother that I am, for bringing me so many moments of laughter and love every single day. Here's to the next two years.
Hanging out on the couch while Natalie was at summer camp!
A few weeks ago, we had a break from this glorious springtime rain. I took advantage of the combination of sun, a nurse on duty, and an afternoon off work to tackle some weeds. When we bought our house almost three years ago, we knew that it was old and would have its challenges, and we also knew it would hold surprises. That first summer, we discovered blooming rosebushes and a large patch of garlic and onions. The next spring showed our house lined with columbines and daffodils, a fence covered in sweet peas, and a single purple iris. And weeds. I don't mind most weeds, really. They make up for the not-so-lush grass in our front yard. Natalie loves dandelions more than any other flower, and some of the so-called weeds end up flowering. But the weeds next to our garage and driveway were impressive. By the time we got around to dealing with them, a few months after Isaac was diagnosed, we had grasses growing 6-8 feet tall. The word reeds comes to mind, though the strip of land between the driveway and our fence where they had taken over is no wetland. Maybe prairie grass is a better term. Yes, imagine a prairie- that is what grows in a 5'x12' patch by the driveway. That single iris grew on the edge of where the prairie grass met the more yard-like grass and dandelion mixture. And for some reason, that single iris annoyed the heck out of me. All of our neighbors have beautiful patches of irises in every color. This spring, the air in our neighborhood is scented with that sweet smell, and our measly, lonely iris, nice though it may be, just looks sad and pointless and out of place and does nothing to add to the beauty of the neighborhood. Nevertheless, I was determined to stay on top of the weeds this summer, so when the iris bloomed it would at least be visible and not shrouded by what was already 3 foot tall grass. We don't, as yet, have a weed-whacker, and anyway, you gotta pull them out by the roots, right?
So that afternoon, those few weeks ago, I spent nearly two hours pulling up prairie grass, a few strands at a time. At first it felt so wrong, pulling out something that was so green and not at all ugly and maybe even native. But I knew they would overtake me if I didn't keep at it. As I got into the zone, I mistakenly pulled up something that was not prairie grass. After a moment of scrutiny, I decided it looked like a young iris plant. "Sorry little iris," I said aloud, "I didn't expect you to be there." A few moments later I did the same thing, and realized that I would have to be more careful. What had started as a free for all was quickly becoming a lesson in patience and discernment. 'Is this a weed? Yes, pull it. Is that a weed? No, leave it, but pull the 14 stalks of grass surrounding it.' As I proceeded, I realized that what I thought was a patch of prairie grass was actually a large bed of irises that had not been properly tended of late. We were busy with other things, with Isaac's diagnosis and hospitalization, with bringing him home and surviving that first summer. The next summer was much the same, a family vacation, a helicopter ride to the hospital, then another. We didn't even notice the weeds until it was too late, until the flowers had been choked out and not given a chance to grow. I silently apologized to the Solitary Iris, bent my head, and kept at my work. As I pulled the weeds, I dwelt upon the obvious metaphor for life. I thought about the judgment and negativity that occur every single moment in our media, be it social or otherwise. We can't see the flowers for the weeds because all we are looking for is weeds. And we have to be careful and diligent when weeding out the bad, because you might pull out some of the good along with it. In fact, you probably will. And the weeds aren't all bad anyway. The prairie grasses are beautiful and hardy and make snakes and foxes and mice very happy. But they don't make neighbors or irises or town ordinances happy. I'm not saying that good and bad are all a matter of perspective- there are absolutely inherent goods and evils. Perhaps, though, we spend too much time focusing on the weeds in other people or ourselves, and not enough time helping them to see the beauty within them, to see the beauty around us and within us. That proverbial weed patch that you've been dealing with in life might just be a cover for something so much more beautiful; that prairie grass could be simply out of place.
"To everything there is a season, and a time for every matter under heaven:
a time to be born, a time to die;
a time to plant, and a time to pluck up what has been planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7
a time to rend, and a time to sew;
a time to keep silence, and a time to speak;
8
a time to love, and a time to hate;
a time for war, and a time for peace." Ecclesiastes 3: 1-8 (RSV).
When I turned 14, my parents bought me a CD player. It was super cool, because it had a 3-disc changer and you could set all 3 on random. AND it had a double tape deck, for all of your mix tape needs. I listened to a lot of Led Zeppelin and Simon and Garfunkel, and my The Byrds Greatest Hits CD was ever on rotation. That song, "Turn, Turn, Turn," and subsequently the above Bible verse, has been in my head ever since. At Natalie's swim lessons today, the pool manager had a tattoo of a cross and the words "Matthew 5:41." That verse comes not long after the Beatitudes, "...and if anyone forces you to go one mile, go with him two." Imagine throngs of teenagers the world over (and, let's be honest, toddlers and parents and everyone in between), bopping along to another catchy Taylor Swift tune, but the words they were getting stuck in their heads were the words of Jesus, teaching us to love our enemies, to give to those who beg of us, to let what you say be simply yes or no. Stick that single right in the middle of the album, in between songs about breakups and retaliation. It might just plant an idea, a reminder, that not everything in this world is pointless and sad and out of place.
But I have heard that Taylor Swift writes her own songs, and it is unlikely she will take song-writing lessons from me. And so, I give you the following examples of people being amazing and not letting the weeds get the best of them, in no particular order.
1. Some weeks ago, I learned that Paul Simon was going to be playing in Denver. Paul Simon has been one of my favorite singers and songwriters since I have memories of having favorites. He is simply the only performer left alive that I hadn't seen perform that I actually wanted to see. I said as much on a brief Facebook post. Within an hour, a friend that I haven't seen or spoken to in about a year (I knew her from church, but her family had moved), mentioned that she might be able to get me tickets.
At the show!!!!!
And if she could get me tickets, she wondered, would I have someone to go with? Would I be able to leave the house for an evening? I wistfully texted my sister, Kara, to whom I attribute most of my musical tastes, to tell her that I wished she could take a few days off work and leave her daughters with her husband and fly down and see Paul Simon with me, if my friend could actually get tickets. By that afternoon, it was all settled. Anne had tickets and was mailing them to me. Kara had plane tickets. Isaac's nurse offered to work a 12 hour shift that day so that she could help put him to bed. It all went off without a hitch. And the show was amazing! Oh, so good.
Hanging out at MacIntosh Lake
2. Yesterday, in honor of Memorial Day, a local family advertised that they would be "running their trains" at their house. I didn't know what that really meant, but it was local and free and sounded kind of cool. So the nurse (Jessica is her name, by the way, and she is wonderful) and I took the kids out to their house. We arrived to find a group of men huddled around two miniature and fully functional narrow gauge steam engines. They were running steam and shoveling coal and placing them on the tracks. I heard someone say that the engines weighted 350 pounds, so you get the idea that by miniature, I really mean 'smaller than a real train.' It turned out that they were offering train rides, and the place to ride was two long, narrow boards. Just the right size for Isaac to lay down on and go for a ride! Jessica and I made it happen, the engineer was super sweet about going slowly through the shady parts and more quickly through the sun. Natalie loved pretending that we were riding 'through the woods.' And a nice man took some pictures and videos of us all. It was awesome. Check out the video below!
3. This last example is kind of long, and includes multiple examples of people being wonderful. This past March, as winter was ebbing and spring was eking out some territory, I began to think of air-conditioning. I had seen a flier that a company was running a special on new systems if they were installed in April. I called, and they sent out a nice and knowledgeable man to give us an estimate on the only system he could imagine getting into this old house. We know our house is old. We know it has an ancient boiler, heat in 2 out of 9 rooms, and lathe and plaster walls that make working on the bones of the house, um, messy. There is no duct work, and not much room to put some in. So he gave us an estimate for a ductless system, which meant mounting heads on inside walls and running the pipes on the outside of the house to a unit. Said estimate came in at just under $20,000. I raised my eyebrows in mild to moderate disbelief when Jeremiah told me. We laughed, and just resigned ourselves to the status quo for the summer: air conditioning units that we turn on out of desperation, and that I turn off throughout the day just to get a break from the noise or when one of us is alone with Isaac and might need to leave him unattended in the living room for a few minutes. No biggie. Other people with older houses know the woes of trying to get airflow going, let alone warmer or colder air. We are not alone in this. But I had already called another company to get another estimate, because I am a savvy homeowner who knows that's what you do.
And now let me tell you what happened. I had picked up my phone, googled "HVAC," zoomed in on the closest dot to us, and called Highland Heating and Air, just a couple of miles down the road here in Mead. The owner, Jack, made an appointment to come out and take a look. I told him what we needed versus what we wanted. What we wanted was a heating and cooling system for the whole house. What we needed, really, was a way to cool down the living room and our bedroom without using air conditioners, mostly because of the noise. At night, with Isaac sleeping less than 10 feet away, his cry is so quiet that I can't hear him over the noise of a window fan, let alone an air conditioner. There were many nights last summer when I barely slept either because of the heat, or because I couldn't hear him and I was afraid to sleep. The same goes for the living room, where Isaac spends almost every waking moment. With the air on, he can't be heard in the next room, so I get nervous to leave long enough to do laundry, clean the bathroom, make breakfast, whatever. He uses his cry and his voice to communicate that he needs to be rolled over, to be suctioned, and to ask where people are if he can't see them. Jack had met Isaac in the living room before he toured the house, and he had asked out of a friendly curiosity what all of his equipment was for, and if Isaac might outgrow or recover from his condition.
My phone rang the next afternoon. It was Misty, Jack's wife. She said Jack wanted to come back over to take another measurement. Then she told me that she and Jack had been touched by our family's story, and by Isaac. She and Jack had talked, and they wanted to donate an entire system to us, labor and all. I burst into the happiest of tears, and typing this out now brings them to my eyes again. They said all we needed was to get an electrician to pull wires from our box out to the unit. I called my friend Kendra, whose husband Matt is an electrician. He came over after work one day and just did the job. He said he did it all with parts from his garage, so he didn't even charge us for materials. Jack and his team of super nice and professional HVAC guys came over on a Saturday near the end of April and installed a ductless system that cools and heats our bedrooms, our living room, and the big bedroom upstairs. Their daughter came to spend the day with Natalie. When they turned it on to test it, I almost didn't believe that it was on. It is so quiet, and it cools down the house so well, and it will forever remind us of the incredible, selfless, and almost nonchalant generosity of Matt and of Jack, Misty, and their employees.
I hadn't decided if I would share this whole story on the blog. But Jeremiah told a friend the story, and our friend said that because of what Highland Heating and Air did for us, he would call them the next time he needed any maintenance at his house. That made up my mind to tell you all, just in case you think to take your business there and support those wonderful people.
***
Yesterday, after the train ride was done and the afternoon storm had passed, I ventured out back to check on the irises. One more plant has buds, but the rest remain barren. They might need more time, another week, another summer, another early spring being properly cared for. The prairie grass has sprouted up again, ever ready to get in the way and reclaim what was once its rightful place, but with less prominence. I pulled out some more of the grass, hopeful for the flower on the edge, that it not be left alone. Hoping that, even if it remains a solitary flower, I will love it for what it is. You have to keep at it in this life, keep looking for the promise of flowers among the weeds, keep weeding out the doubts and fears that insist on returning, keep believing that there is a time for every purpose, and keep planting the hope for yourself and for others, be they weeds, flower patches, prairie grass, or a Solitary Iris.
And now for some random photos!
Petting a chick at the co-op
Visiting Sunflower Farms in Longmont
Natalie teaching Isaac about the calendar
Eating cookie dough and watching a dragon cartoon :)
Hello friends! I hope you are all well and enjoying this beautiful spring. Isaac is doing great. After his battle with that yucky stomach virus, he has started putting weight back on. We are determined to get him back up on the growth chart for weight, but he keeps getting longer and throwing off our plans. He makes us laugh every day and puts a smile on my face even before I've had my first cup of coffee (that's a privilege that is pretty much exclusive to him, my poor family...). Natalie continues to grow and become more independent, and her relationship with Isaac brings me joy that I don't know how to describe. She gave him a kiss the other night when she came over to his crib for just one more bedtime story. I said "Oh, Isaac, what a lucky boy you are, to have a sister who gives you such nice kisses." Natalie replied, "And I'm lucky girl, to have Isaac as my brother." When I read that, I see that it doesn't begin to convey the sweetness and love that those two share. When he calls to her on his talker, she doesn't miss a beat saying "What?" or "Isaac, I'm playing in my room right now, I can't play with you!" A couple of weeks ago, Isaac was napping, and Natalie and Jeremiah were playing on the front porch. I went out to enjoy a few minutes of sunshine, and Natalie said "Mommy, who is watching over Isaac?" She always asks us to turn his head toward her in the car, so they can see each other. And if she hears him whining about something when he is facing away from her, she always says "It's okay buddy, I'm still here, you aren't alone." She is an amazing person, and I am so proud of her. She takes it all in stride, because she never expected Isaac to be any different than he is. But she is growing up, and has met enough other kids to know that Isaac is different from them. She is well past thinking he lays down because he is a baby. This morning, we decided to go to the store after church. I suggested it, half kidding, but then mentioned that Isaac hadn't been to the grocery store since I was on maternity leave. He enjoyed his trips to Costco, and it seemed like the grocery store would be equally entertaining. The grocery store is always the stop on my way home from work, or the quick trip into town while Isaac is napping. On our way today, Jeremiah suggested stopping for a quick lunch. As we pulled into the parking lot, Natalie asked "Is Isaac going to grow up to be a big boy?" I said "Well honey, he is growing, he's already getting to be a big boy." She replied, "No, I mean, is Isaac going to grow and be able to talk on his own and walk on his own?" I couldn't respond, because of the sudden tears in my eyes and the choke-hold on my heart and lungs and voice. Jeremiah managed to tell her that doctors all over the world were working on it, and that we really hope that someday he will be able to. Kids will do that, won't they? Ask you something so innocent, not knowing that it's a question that sits in the back of your mind just waiting for an answer.
Anyway, Isaac got to taste a french fry and smile at some nice ladies who wanted to know if his eyes were as pretty as his sister's. He was interested in all of the new sights of the grocery store, but seemed more excited about the red straw from the restaurant that he was holding, to which Jeremiah had attached a twist tie from the produce department. Ah, the simple things. And the Dad things. If Daddy has something, and he gives it to Isaac, heaven help the poor soul who thinks to separate said treasure from that child.
Isaac had another quarterly appointment with his team at Children's Hospital this last Friday. Every time we go to one of those, I remember his first one. When we made that first appointment, after his four week hospital stay, we weren't sure we would even be going. When we made the second appointment, I still felt like we were tempting fate. These past several months, that feeling of dread has relaxed its grip. Three months from now doesn't seem impossible or even unlikely to still have Isaac with us. But then, I know parents who would have said the same, and tonight they are missing their little one, or little ones, and wishing they could have just one more bedtime story.
The appointment went just fine. Isaac showed off some of his talker skills for the people he knows well enough to want to impress. He got another vaccine, we increased his calorie intake, and brought home a new type of mask to try. I commiserated with some of our team members about the joys and heartaches of social media as relates to medical care, specifically to the care of kids with SMA- the good, the bad, the illogical. The physical therapist and neurologist were excited about Isaac's stroller mount for his eye-gaze device. Even our wonderfully stubborn respiratory therapist had to admit that Jeremiah's modifications allowing portable humidity were worthwhile. By admit, I mean he shrugged his shoulders, sniffed, and said "Well..." If you knew him, and some of you might, you would know that he is stubborn with a smile, a genuine one.
I have more to tell you, about irises, HVAC, and Paul Simon. That will have to be next time! For now, please continue to pray for us, for Isaac, for Natalie, for our family, for his doctors, and for a cure.
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
Saturday, April 16, 2016
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
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!
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!
