...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;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to rend, and a time to sew;
a time to keep silence, and a time to speak;
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 :)