Joy to the World, Millettes are Home!
Room C4031
Neurosciences Unit
Gillette Children's Hospital
Christmas Eve 2018
We were supposed to be at home wrapping gifts and making our gingerbread house. We should have been hanging stockings and driving around to see holiday lights.
But instead we were in room C4031 for four days, snuggled in a hospital recliner. Jingle bells were replaced with loud beeping monitors, and our holiday guests were the hospital staff.
It was all wrong.
It doesn't matter how many precautions we've taken or plans we've made. Ronin's health can change in an instant, and in that moment nothing else seems to matter. There are no free passes on weekends, vacations, or even on Christmas.
And this reality can be cruel.
We're lucky. Our gift this year was being able to go home on Christmas Eve, and the feeling is bittersweet. We're grateful to wake up in our own beds on Christmas morning, but we also left friends behind who won't.
Leaving doesn't mean Ronin is all better and that it won't happen again. We WILL be back in room C40-something. We just pray that this break is a long and healthy one.
The holidays are a magical time of year. The lights, carols, traditions, and family are all part of what makes it so special. From Thanksgiving to New Years there seems to be something in the air that makes people smile. Maybe it's the scent of pine, peppermint, and fresh cookies. Or the feeling of cozy sweaters, giving to others, and a sense of renewal. It could even just be Amazon Prime and how great it feels to shop without pants on. Whatever it is, people are merry all around and of course they are- it's the holidays!
But there's also a certain stress that comes this time of year...
Does any of this sound familiar?
You're struggling to coordinate schedules, scrambling for last minute gifts, while keeping a close eye on the bank account. You're trying to spend time with family but not having a superpower to be in three places at one time.
Getting cards out on time.
Decorating the house.
Baking perfect cookies.
STILL scrambling for last minute gifts.
Don't forget to wear that bright smile and wish everyone you see a Merry Christmas! Happy Hanukkah! Kwanzaa! New Year!
Spread that holiday cheer.
Put on an ugly sweater.
Decorate a cookie.
Sing a carol.
... There should be a holiday after the holidays dedicated to just unwinding from the chaos. I know our family could sure use one.
Then there's little Ronin.
He's the family MVP! And there are so many exciting things going on this time of year. With all his medical complexities, it can be hard to know when to say "we're SO DONE."
Having a loved one with disabilities can be especially challenging for families this season. While each of us are in our own whirlwind of holiday madness, I thought I might give some insight on what this looks like for us. Between routines, gifts, events, food, and travel- we're just STILL trying to keep this flippin' S*** together!
ROUTINE
The #1 rule of raising a child with special needs is keeping a schedule. Lose that and next you'll lose your mind. Stay on track. Keep things consistent and familiar. For Ronin, something like Christmas comes out of left field.
Changes in decor, lights, and hype of the holidays can leave a fragile mind overwhelmed. As a family, we have to determine how to help Ronin enjoy the festivities while keeping our plan as familiar as possible.
Writing cards, wrapping gifts, baking cookies- it's all time consuming on top of an already busy day. While most parents can't contain their independent toddlers, we're left with the guilt of sitting or laying ours down, propped up, trying desperately to find something that can engage them for a bit.
We always cave.
On the holly jolly side...
A way to keep holidays familiar for Ronin is to keep a cumulative memory book to take out along with the gawdy decorations. Each year we can add photos of family and memories from the year before and include some scents, lights, and music. When Christmas explodes in our house every 12 months, maybe Ro will have a sense of familiarity by having the book. This could be fun for many traditions- Easter, Halloween, 4th of July. Finding the time to do them is another story...
GIFTS
Yeah, yeah, yeah... it's not about the gifts, we can't take Christ out of Christmas, and Ronin is the greatest gift of all. BUT let's also keep it real... gifts are indeed PART of most people's holiday fun.
This is the 2nd year I've struggled walking down toy aisles. Even when they're geared towards infants, toys aren't quite right for engaging a kiddo like Ronin. Visual impairment and motor issues mean few things will keep his interest for long. And if they do, they're usually too complicated for him to play independently. And if they are, the price tag is insane.
I've heard this only gets harder as kids with developmental delays get older. Can you imagine shopping in the same toy aisle four years in a row? How about seven? Or twelve? Or twenty? For parents who have kiddos like Ronin, this can be hard amid the holiday cheer.
On the holly jolly side...
More companies are starting to note the lack of age appropriate toys for kids with special needs. There are switch activated conversions that can make an otherwise difficult toy much easier to use.
There is a great organization called Santa's Little Hackers. With donations and volunteers they work hard to collect, adapt, and ship toys across the country to kids with varying disabilities. This year Ronin was one of the grateful recipients, and it will be such a special gift! A lot of great info can be found on their website, santaslittlehackers.com.
I also love the idea of wrapping up some familiar treasures! This may sound like a mean trick to play on a child, but it can actually be really comforting if they struggle when things are brand new. For Ronin, seeing his stuffed animal puppy would be the coolest surprise ever!
And forget about all that beautiful wrapping paper. Unwrapping a gift for Ronin would be like trying to solve a Rubik's Cube. Talk about a stressful Christmas morning!
(Side note: This also will allow me to claim hours of my life back from wrapping each year around the holidays. I'll drink to that!)
EVENTS
Here in Minne-snow-ta we LOVE us some holiday spirit. We've got this month long event in Minneapolis called Holidazzle. Get this- people choose to stand outside in the cold for hours... for fun! Everything is decorated with lights and it's made up of vendors, food, concerts, movies, parades, fireworks. And that's just one event! We have theater productions, lights displays, ice skating, pub crawls, and something called a Holly Trolley where you can ride around with Santa and roast marshmellows. It's a winter wonderland.
While a number of events are family-friendly, they aren't necessarily Ronin-friendly. Where is parking? Is it handicap accessible? Where is the nearest clinic? Is there a medic here? Will it be too loud? Too bright? Too crowded? Too cold?
On second thought- I guess we'll sit this one out.
On the holly jolly side...
Making holiday traditions with family is something I've always looked forward to and in time we'll find ones that are perfect for us. Sometimes they're right at home. We love to take out our ornaments and reminisce over memories attached to each one. Every year my mother-in-law reads us the story of Jesus' birth, and I can't imagine Christmas without it.
Lights are a big hit with Ronin, so scoping out the best in the city will have to go on our to-do list.
Did you know that holiday techno music is a thing? Ro thinks it's the greatest thing since lullaby techno music... also a thing. So we have our music and lights... Sounds like a Baby Jesus birthday party to me!
Of course the greatest tradition of ours will always be spending time with family. So as long as we're together and Ronin is happy, our holidays will be A-OK.
(Even in room C4031)
FOOD
Imagine you have a kid on a diet for seizure control that is so specific you have to measure portions on a gram scale and feed most of it through a tube. Now go to any holiday gathering where 99% of what's on the table isn't on that diet.
Butter. That's probably the extent of your menu options. Appetizing...
Usually when someone is trying to eat healthy or diet, a cheat meal won't directly endanger their health. it's not medically prescribed. In Ronin's case it means seizures. This can make meals at restaurants and people's homes a little tricky. The holidays are even harder with sweet treats everywhere you turn!
On the holly jolly side...
Lots of food can be made keto-friendly... it may take a whole stick of butter but it can be done. But for now we always pack what we need for him to eat. Just don't be offended when I excuse myself to sit with him in another room away from all the delicious smells.
TRAVEL
As I mentioned before, we live in a winter wonderland. We love spending time with family, but it's a whole new level when traveling with Ronin.
Last year we were two hours out of town before realizing part of his feeding pump was at home on the kitchen table. And you can't just swing through a Target to pick one up. Even Ronin's formula is only available through a medical supply company. Once the car is packed and transformed into a clinic on wheels- we're set! We WILL have forgotten something... We just pray it's sold at a Target.
Traveling also means scoping out the nearest hospitals and emergency rooms in advance. Just this week Ronin's oxygen dropped to scary levels within 15 minutes. Knowing where the nearest ER for us is like knowing where to find the bathroom. And even then, most aren't equipped to handle Ronin's care.
On the holly jolly side...
An ambulance ride is always a call away, and once Ronin is stabilized he can be transported anywhere. We have his doctors' phone numbers on speed dial so in a scary situation we're never on our own.
Family is understanding that Ronin's health can be unpredictable. Today is Christmas Eve and we definitely won't be making it to family dinner. We know once he is feeling 100%, our families will help us give Ronin the greatest Christmas yet! We have so much to be thankful for, and you don't need a date on the calendar to celebrate that.
This time of year can be wonderful! ...As long as we all don't get caught up in accommodating for everyone but ourselves. We don't need to wrap perfect presents or attend every event. The pressure of it all can be daunting. This holiday hype builds up for months and then is suddenly over. For all the planning, spending, decorating, baking, traveling, wrapping and everything else we put into it- we'd better relax and enjoy it!
There's even something about being cooped up in a hospital room that makes you realize what is actually important. I'm thankful to be home with a healthy child, but being together was all we really needed.
This is what holidays look like with Ronin. They can be complicated and messy. Sometimes we will miss out on family gatherings or pass on local events. The gifts may be a little different. The traditions will be different too. And while having a child with disabilities doesn't exactly mesh well with a lot of the holiday run-around, it sure is nice to really discover what's meaningful to our family. This perspective isn't always easy to take with grace. There are moments that are really hard. But we'll always make the best of it.
Anywhere with Ronin sounds like a Merry Christmas to me.
'Twas two nights before Christmas in the hospital wing,
Ronin stirred in his crib that was fit for a king!
The monitors beeped and gave Mommy a scare,
In hopes that his night nurse soon would be there.
And Ronin still nestled all snug as could be,
Said "Mommy stop it! You're embarrassing me!"
While Daddy on the couch who was feeling like crap,
Had just settled down for a 10 minute nap.
When out at the door there arose such a clatter,
In came the night nurse to see what was the matter.
And over to Ronin she flew like a flash,
Looked over his vitals, checked out his med stash.
Then Ronin announced with a smile and a glow,
"Please have a seat while I do my light show."
When what to her wondering eyes did appear,
But his prism light toy, she started to cheer!
With using his switch so lively and quick,
She thought for a moment "it must be a trick!"
More nurses came too, in crowds they came,
And they whistled and shouted and cheered on his name:
"Go Ronin! Go Ronin! Your light show's the best!
Go Ronin! Go Ronin! We're all so impressed!"
To the top of the ceiling! And along the whole wall!
Now dance away! Dance away! Dance away all!"
He spoke not a word, but went straight to his work,
Just playing his light show with a little smirk.
But then in an instant the nurses all froze,
Still tired and crappy, up Daddy arose!
Ronin quick stopped his show, and ended the fun,
And told all his nurses the party was done.
But they heard him exclaim, as he turned off his light,
"Merry Christmas to all, and to all a good night!"
