Most nights I want our evening walks to be never-ending. Those perfect nights, when it's still and just a little cool, the skies are clear and dusk is on the horizon. People are out grilling, you can smell pit fires, pine and cedar. Kids are chasing each other in their swimsuits, shouting to each other.
It's those nights that make me feel so nostalgic - I can remember childhood and adolescence in a vintage, Sandlot-esque way in my mind's eye (although we never once had a block party where I lived, and there were no Fourth of July night games.) It's not that I want to go back there. I don't miss any of my memories in a way that I wish to relive them. But all those smells and sounds hold my fond memories in them.
When you're a kid and living these experiences, you don't take the time to think about how you'll want the same for your kids one day. That only comes as you get older and those memories sift and filter, gaining a poignancy triggered by the wisp of smoke from charcoal or a breeze through the pines. The feelings are amplified, condensed - turned golden.
You want all those same joys for your child - late night fires, softball games, camping, swimming with friends. When you think about your kids, you think about giving them all the good snippets of your past to pave the way for theirs.
You don't think about some doctor trying to tell you what they won't be able to do - what they won't LIVE to do - surely not as a child, and most of the time not as an adult.
And then you are faced with some person in a lab coat, trying to rip those dreams and wishes from your hands. And you think (at least I did), "Who the eff are you to tell me what my kid will do? What her life will be?" (Sorry, but when someone tells you things like that, you aren't usually feeling very polite.) And you resolve to prove them wrong.
So maybe it's miracle league softball instead of tee ball. And maybe those walks are taken in a stroller, far past the time when she should be walking. You're putting the dirt and worms in her hand, instead of her dragging them into your house. Kool-Aid and ice cream cones are just little tastes on the end of her tongue. But the smells are the same. The happiness and joy is there. And the memories are forming.
Tuesday, June 28, 2011
Summer, Summer, Summertime
Monday, June 20, 2011
Fathers who have earned the title "Daddy"
I know this is a day late, but we were so busy yesterday, I didn't even get a chance to *think* about doing this! Not only was it Father's Day, we also had our niece (who also happens to now be our goddaughter) get baptized in Madison. Needless to say, we logged some miles on the van yesterday!
So I got to tell everyone that needed to hear it "Happy Father's Day" yesterday, but now I get to tell everyone else why they deserved to hear it. My own dad has worked very hard his whole life, at very physically demanding jobs that left him bone-weary at the end of every day. He was still there to cart my friends and me around to movies and the mall on weekends in our giant van (remember, the one I swore I would never drive and now own in a lovely shade of green). What a lucky guy, getting to drive 50+ hours a week for work, then spending his weekend chauffeuring a group of teenage girls around, at all hours of the day and night. My dad always did for us and thought of himself last. He also gave me the huge gift of being a great husband to my mom, and letting me see that it is not unreasonable to expect a husband that respects you and puts your feelings above all else. Because of the great example set by my parents (and my alluring good looks), I have Noah.
Noah is the embodiment of the definition of a great husband. Never is my husband disrespectful to me. It's not just because he has restraint either; he is truly just that thoughtful. He builds me up, to others and to myself. He is constantly suggesting we do things he thinks I would like to do. And he absolutely shines as Lucy's father.
If love could provide a cure for SMA, Lucy would have had one a million times over already. Noah wakes up lots of mornings to tend to Lucy's immediate waking up needs, so I get a chance to catch a few more winks. He picks her up and dances her around, and she just radiates joy. Lucy laughs a thousand times a day because of Daddy. Noah takes care of her morning breathing treatment, and on weekends he often does the night time one too, so I can catch up on housework or projects on the sewing machine. He does laundry. He does dishes - sometimes several times a day. He pitches in on dinner, often. On his days at work, he goes in after spending as much time with Lucy as possible, and comes home to dance her around some more before bedtime, helps me attach all her machines, and kisses her goodnight. He throws in a load of towels and washes the dishes that have accumulated by the sink. If he's not already falling asleep and Lucy's pump isn't alarming like a piece of crap, he can sit down for an hour to himself with his Xbox before bed. Maybe.
His weekends are spent running errands with his family, which is no easy chore. Lucy's machines and Lucy herself must be loaded and unloaded from the van over and over. We do shopping, go to the park, go swimming, go on walks, go out for dinner. Noah helps me with house projects and does landscaping. Noah has a hand in every aspect of our lives, and both hands in most. There is no way I could do it - no way Lucy would be the happy little girl she is - without him.
I love him dearly, and Lucy just glows around him. At the baptism yesterday, Lucy was getting impatient toward the end of service. She has to lay in her stroller the whole time (without the iPad! gasp!) and while she will tolerate a non-rolling stroller for a while without a screen for entertainment, she was getting fed up and humming loudly to let us know that time was up. During the last song, I suctioned her so Noah could pick her up. I think everyone within a 5 row radius could see her beaming the second Daddy picked her up. As he danced with her, the smile only grew. When he is home all day on the weekend, all Lucy wants is to be carried around by him. It warms my heart that it is Noah's joy to do this just as much as it is Lucy's to be carried.
I could not dream up a better husband or father, and I know Lucy loves her Daddy with all of her heart. I thank God every day for my family, as He is my father too, and has shown His love for me in many ways throughout my life.
Friday, June 3, 2011
Reclaiming our independence - SMA-style
Lucy was born in the summer, so early on I would take her on walks around the neighborhood while Noah was working - it was a nice change of scenery, and I figured it would help me lose my baby weight (we can all see how that turned out.) Mostly, she slept, and I was never worried. Why should I have?
Two months later Lucy was diagnosed with SMA, and we found out that the convenient little travel system we had for her could kill her. It was October anyway, and walking season was all but over in Wisconsin.
Next spring, some relatives were extraordinarily generous and donated the money for Lucy to have an EASyS stroller, which had the option of laying flat. Since Lucy can choke very easily in an upright position, this stroller allowed her to see the world again - at this age, she was far too difficult to carry for long periods of time. Floppy baby + possible choking episodes = need for flat stroller. We very much enjoyed our walks as a family, but since Noah has to have a job, (I know, right? What's up with THAT?) we had to schedule them around his available time and factor in the weather as well. Not quite the freewheeling lifestyle that we enjoyed pre-SMA... well, as freewheeling as one's life can be with a nursing newborn ;)
Lucy has been relatively stable. Yes, she chokes occasionally, but we know what causes her to choke - upright positioning, if not carefully monitored and suctioned as needed, and position change without suction - so it's easily avoidable. We've had *maybe* an issue or two with a plug, and I say maybe because both times it was so small I'm not even sure if it qualified. I've had to use the Cough Assist twice on her in emergency situations, and both were when she had been sitting upright. She is good at moving her own secretions, letting me know if she needs suctioning, and can maintain oxygen saturations on her own. We don't yet have a tray for under her stroller that will support her Cough Assist, as well as the battery and inverter needed to run it, so we go on walks with her suction and pulse oximeter, which is no less than what she routinely uses throughout the day at home. We also always carry an Ambu-bag for emergencies.
After watching a few nice afternoons go by in the early spring (after 6 months of lockdown, let me remind you), I started thinking about how different it would really be if I just took Lucy on a walk by myself. Just thinking it felt so daring. We never took Lucy anywhere unless both of us were with her. But the more I thought about it, the more doable it seemed.
And so we ventured out, me feeling all brazen and Lucy looking confused ("Um, *where* is Daddy? You know, my hand-holder?"). I can't say that I was nervous. All of my past experiences with Lucy were saying that she was going to be okay, that we could do this. We stayed relatively close to home, and made it back without incident.
Lucy quite enjoys our walks. I prop her arms up so she can feel the breeze, we talk about what kinds of trees Mama thinks we see, we bark back at dogs, we say hi to the people out and about, and Lucy smiles randomly throughout. I think she likes this newfound freedom.
Friday, May 27, 2011
Haaaaay, LucyLucyLucyLucy, SWING!
Lucy LOVES swinging. She is a daredevil (as are most children with SMA, it seems), and she loves flying through the air. She sits in Daddy's lap on the swings in the park and smiles and giggles with joy as he glides back and forth with her.
We were going to try to make Lucy a swing for at home so she could have that joy every day, not just on the days we could make it to the park. I got a piece of wood and was preparing to make her a flat swing, since the adaptive swings are extraordinarily pricey, but there's always something that needs to be done around here and I hadn't gotten to it yet.
That ended up working in Lucy's favor - another family's daughter had outgrown her swing, and they were hugely generous, giving it to Lucy! It's called a Jenn swing, and it can be adjusted to go back as far as we need it to, so that Lucy can swing on her own and still be safe.
Of course it was raining the day it was delivered, but I got it unwrapped and ready to go in anticipation of the next nice day :) I got it up yesterday and Lucy gave it the inaugural ride. I wish I would have caught the first couple seconds on film - there was a squeal of delight :) She looked as if she were in utter disbelief that she was swinging all by herself. What a big girl!
Thank you so much Salus family - Sophia especially, for sharing this awesome opportunity with Lucy!
Tuesday, May 24, 2011
Lucy language
There is an enormous range of abilities within the SMA diagnosis, even just within the "type 1" category. Some kids can talk, most can't. Some can move their arms, some can wiggle their fingers. Some can breathe on their own for hours at a time, or even all day; some are vent dependent.
We weren't really sure what to expect for Lucy in the beginning. I'm talking after finding a competent (to say the least!) doctor, one who didn't just say blandly, "Well, yeah, you *could* trach her, and will need to eventually..." We didn't know if Lucy would retain any physical strength, or be able to talk. As she grew, she lost much of the physical capacity she once had. She can't lift her arms off of a flat surface, can't turn her head while laying down. We now need to be extra careful when positioning her or picking her up - we almost always have to suction her first. And Lucy can't talk.
I am extraordinarily grateful for the strength she has been blessed with; being diagnosed with a disease like SMA, it's more than we could ever ask for. That doesn't mean that it doesn't hurt my heart that I don't hear her say "Mama," or get to listen to all the annoying questions that exasperate most parents. She can say "ahv" for "I love you," and it melts me every time she does it. For the most part, however, Lucy does not open her mouth to make noise. It's a lot of work for her to even open her jaw, so the majority of her noise-making is humming and squealing.
It seems like she goes through phases of "talking" and not talking. Weeks will go by with only hums and squeaks, and I'll start to think "okay, she probably can't any more." We do oral therapy twice a day, but there's only so much you can do - it's not something you can force. Then, after I've resigned myself to the fact she just probably won't be talking anymore, we get a few days where she wants to talk a lot. And to me, it's like hearing angels sing. It makes me teary with joy. It's not words, or even syllables, but it doesn't matter. It's Lucy language.
Wednesday, May 18, 2011
Bowling for Lucy - SUCCESS!
Unfortunately, there are many, many things that can dangerously affect a child with SMA - the heat being one of them. If a child with SMA gets too hot, it can cause them to get dehydrated quickly. If they're dehydrated, their secretions thicken. If their secretions get too thick, they cause plugs. Plugs can be deadly for SMA children, completely blocking off their airway until you can move them with a cough machine and pull them out with the suction - there is nothing the kiddo can do about it. Imagine how scary that would be for your child!
Needless to say, not only do we need to be careful in the winter, we need to be vigilant in the summer as well. SMA makes it hard for kids to regulate body temps as well, so we try to keep Lucy in temperature-controlled environments. Although it doesn't seem like summer will ever get here this year (!!), soon it will be too hot for Lucy to be outside for too long.
It gets hot in our house too. We don't have central air conditioning, only window units for the two upstairs room. Because of this, on the hot days we are forced to stay upstairs in our bedroom - much like the winter, just for different reasons. We can't even run both of the window units at the same time because we have a small refrigerator upstairs for Lucy's food, so we're not constantly having to run downstairs and leave her unattended. Since our house is old and has obviously had work done by people who completely disregard building codes, all of our upstairs electrical is screwy; it's impossible to run two window unit air conditioners and the refrigerator at the same time. I honestly wasn't sure how we were going to get Lucy in her own room this summer, since she couldn't sleep in a room with no AC, and it would be hard for us to not have it.
God has taken incredible care of our family, though, and He came through again in the form of a fundraiser at Generations Lanes in Eldorado. The bowling alley is owned by Jeremy and MJ Brenner, a cousin and cousin-in-law of Noah's. They, along with Lucy's grandparents Jim and Jeanne Zahn, and countless others, organized and orchestrated a Scotch doubles tournament, raffles, silent auction and karaoke night to benefit our family. The costs of having a child with SMA are astronomical, both financially and time-wise. There are just not enough hours in the day to get everything done, and while insurance pays for some things, they sure aren't happy about it, and it's a struggle every step of the way.
The money raised at the fundraiser that night will be enough for us to fix the air conditioning in our van (which was unbearably stifling last summer!) and install central air in our house. Now Lucy and I won't be stuck in the bedroom for half the summer! This also means that we won't have to worry about risking an electrical fire to keep the refrigerator for her food running :)
I can't even begin to express how shocked we were at the success of this fundraiser. We are continually pleasantly surprised by the sheer generosity and care shown to us by our family, friends, and complete strangers. I don't think there's anyone who hasn't heard the term "it takes a village," and in the case of children with SMA, that is inherently true. There is no way we could give Lucy the quality of life that we are able to without God's blessings coming through the people around us.
We were very sorry that Lucy couldn't attend (close quarters + lingering germs = unsafe environment for a SMA child), but we want to thank all who donated time, money and items for our family. I know we can never thank all of you personally, but we will think of you every time we can watch a movie as a family in our living room, or take a trip with Lucy this summer. I hope that God shines in your lives as brightly as He shines in ours!
Wednesday, May 11, 2011
Lucy's new toy - worth more than my first car
Well, not really. I was born a little bit past the era when you could get a drivable car for a couple hundred bucks; but I digress. Lucy has spent this afternoon playing with her wonderful iPad - look at her go! These are "toys" that open wonderful new doors for children who live with neuromuscular diseases and cannot play in the traditional sense.
We were able to get Lucy this pricey piece of equipment due to the impossibly generous donations of so, so many people. Not monetary donations, though - donations of discs that were no longer being used; CDs and DVDs. Hundreds upon hundreds of them. Boxes and bags of them. We sorted through them as best we could and sent them off to iPodmeister. They graciously gave us a 10% discount on the amount of discs needed to procure an iPad. We ended up sending the requisite 675, plus an additional 30 to compensate for any damaged ones we had overlooked. The company pays for shipping, which was a big plus!
A couple of weeks later, we received an email from iPodmeister, stating that they of the discs had received:
