On Being Home

On Being Home

We’ve been home for a week now.

We are SO, SO HAPPY.

It is amazing. We love everything. The first morning back, I almost cried with joy over being able to use my chef’s knife again. And my cast iron pan! And when I didn’t have any onions for my scrambled eggs (Eggs! Farm-fresh eggs!) I ran outside into the sunshine and grabbed a handful of fresh chives.

After five months of living in a sixth-floor hospital room and eating cafeteria food, it was heaven.

For days, Ben and I would just rattle off all the different ways life was wonderful. A whole fridge of food all to ourselves! Coffee, any time we wanted! No elevators! No key cards! Comforters on our beds! It was like we’d just come home from a third-world country.

It was also a ton of work, though — getting everything set up and learning what we needed to know to care for our special-needs baby. We got home at 5pm on Monday night and didn’t stop working until midnight. We got up the next morning and repeated the same thing for the next three days, hardly stopping to eat and/or relax. (It’s a good thing Felix is such a happy camper. We pretty much ignored him for the first several days as we got everything ready.)

We had to set up a room for him on the main floor — crib, change table, etc — and set everything up for constant cleaning and sanitizing. We installed hand sanitizer dispensers and paper towel dispensers. We organized all his medical supplies. We set out gloves, gowns and masks, for ourselves and the nurses. We had to learn how to use and change the bags on his IV pump, how to sterilize his bottles, and how to steam-mop the floors. We had to find clothes for him, now that the hospital isn’t supplying sleepers. Nurses came and we had to sign paperwork.

And we had to move back into our home. Unload the van and unpack all our suitcases after almost half a year of being away. We still had Christmas presents to find places for.

But we are just so happy to be home. Especially now that we’re settled in.

And thank goodness, Ben’s mom and sister cleaned our house floor to ceiling before we arrived, and our friends filled our freezer with frozen meals. (We are blessed beyond measure in the friends and family department.)

welcome(This is how awesome our friends are. They threw us a “sanitary welcome home party.”)

The changes to Felix’s care have been so great for all of us. Instead of an IV pole, his IV meds are contained in a little bag we can wear like a purse. We can take him everywhere in the room without dragging a heavy wheeled machine around.

A nurse comes once a week. Not every couple of hours.

We still use the gowns/gloves/masks, but only on an as-needed basis. If we’re just talking to him, we’ll keep our faces bare; but we’ll put on a mask to pick him up. (I cannot be trusted not to kiss him otherwise.) We only put on gowns if we’ve just come in from outside or a public place. We only wear gloves if he’s likely to suck on our fingers or if our hands are getting too dry and cracked from all the washing/sanitizing.

It feels amazing to touch his skin with our bare hands again. The squishy little nugget!

We can make his bottles ourselves and take them out whenever we want. It’s fabulous. No rigid schedule anymore. If he’s not hungry at 4pm we can wait an hour. Or we can take it out early. No force-feeding or waiting unnecessarily, just to stick to their arbitrary schedule.

The only downsides to making his formula ourselves are (1) it’s a LOT of work. We have to sterilize everything that comes into contact with his feeding, and (2) I HATE it. It forces me to actively face, every day, the fact that I can’t breastfeed.

(Tangent: I HATE, HATE, HATE making his formula. HATE IT. I realize they did it for Felix’s own good and that my breast milk almost killed him, but I will always and forever subconsciously hate the medical community for forcing me to end one of the most meaningful, satisfying, and enjoyable experiences of my life. It was just awful, what they did to me. I HATE THEM.)

(Moving on…)

Being close to Lydia is so, so wonderful. We’ve seen her almost every day since we’ve been home. She gets funnier and smarter every day. Playing in our back yard together for an hour feels like a vacation in paradise.

Felix loves being home, too. He spent he first couple of days in awe of his surroundings. He was fascinating by everything. The light fixtures! The animals on his bedding! The mirrors on the wall! He is a marvelously happy little boy.

Again: it just feels SO GOOD to be in our cozy home. We’ve always been homebodies and appreciated what we had, but this experience has intensified our love. Which is a good thing, considering we will likely be living in isolation here over the next year. Which brings me to . . .

What’s In Store for the Future?

Our journey with Felix and SCID is not nearly over. We’re just home temporarily until we can take the next big step.

The goal is still gene therapy L.A. in July.

Closer to that time, Felix will have to undergo an intense series of tests to make sure he is eligible. As I’ve mentioned, it’s an experimental therapy and Felix is one of fifteen patients tentatively enrolled in the clinical trial.  (You can learn more about gene therapy here.)

It’s a terrifying prospect — bone marrow harvest, chemo, genetic modification of stem cells, transplant — but still our best hope for him, as far as we understand it.

Our time in L.A. should only be about 7-10 days. After that, we expect to spend another month or so in hospital back in Ontario to have Felix closely monitored.

After that, it’s hopefully back home in isolation for another 6-12 months.

If all goes well, Felix will hopefully be able to go out into the world some time in 2016.

And hopefully I can kiss him again for the first time since December 4, 2014. I’ll be counting down the days.

I want to thank you all again for your prayers and support. We couldn’t have done this without you.

Crochet Helped Me Suvive Trauma

How Crocheting Helped Me Survive Trauma

As regular readers know, back in February Ben helped me have a revelation.

We’d been in the hospital for over two months with our sweet Felix, who was (and is) battling a life-threatening disease, and the constant grip of anxiety was threatening to suffocate me. Worries about his future spun around my brain like a never-ending merry-go-round. There was absolutely nothing I could do to help my baby. I wanted to run away. I wanted to die.

Instead, I cried. Constantly. In his room. In the cafeteria. In bed. On the phone with my mom.

I was exhausted.

And one day when I was watering my cafeteria pizza with my tears, Ben suggested I take up a hobby to ease my anxiety. Hadn’t I always wanted to learn to knit or crochet?

That suggestion changed everything.

I took a free online crocheting class. Sitting on the cot in Felix’s room, armed with a size-H hook and some cotton yarn from Wal-Mart, I learned how to chain, and then how to single-crochet. My yarn got all twisted up and I didn’t know the top of my piece from the bottom, but before long there was a new piece of tangled cotton fabric dangling from my hook. I had made something! I had made my first swatch of fabric!

I learned a few taller stitches and then how to crochet in the round. I learned how to make a granny square. I learned how to stitch the granny squares together to make a blanket.

I had made a tiny little granny square blanket! Out of yarn!

I started to frequent different yarn shops in the city, getting acquainted with different fibres. I needed new sizes of hooks for different projects. I made a simple cotton bowl and a simple scarf. It felt like magic, creating real objects out of nothing but yarn.

Suddenly, I had something else to think about besides my son’s health and how much I missed my home and my daughter. I sill worried about him almost constantly, and felt pangs when I remembered how distant my old life was. But I had purpose now. Crochet helped me to hang on.

I will always have a tender place in my heart for crochet. It helped me survive the trauma of our stay in the hospital.

I’ve mulled over some of the ways crochet was so therapeutic. Here are a few of them:

It’s kind of like meditating.

Like meditation, different kinds of handiwork like crochet allow you to empty your mind. When you need to concentrate on making even stitches, there’s less room in your brain for worries and ugly mental pictures.

Some people count their breaths to help them meditate. I counted stitches. And when I did that, everything else disappeared for a little while.

Crocheting as therapy

It gave me a sense of purpose.

When a loved one is going through illness, there’s often very little you can do at the bedside but wait. I had nothing to do but sit and worry.

After I took up crocheting, I had projects lined up that helped me to feel productive and valuable when I felt otherwise useless and helpless. I could make a cozy blanket for my baby! I could make some storage baskets for my little girl’s treasures back home! Hadn’t I always wanted a black-and-white throw blanket for our living room? Maybe I could start crocheting infinity scarves for my friends!

When I went to bed at night, instead of dwelling uselessly on the scary future (Is the procedure going to work? Is Felix going to be a part of our lives for years to come? How would I explain his death to Lydia if it came to that?), I could think about my projects. What colour scheme did I want for my next blanket? What material should it be made from? How big should it be?

When I woke up every morning, I was eager to get back to my project and finish one more stripe on that blanket or the legs of that little amigurumi creature. When I put Felix back into his crib for a nap, I could cross the room and finish up the last rounds of that bowl and get it ready for felting.

It felt good to finally master a skill I’d always wanted under my belt. I could already cook, sew, and paint; now I felt like if I mastered crochet I could make just about anything.

It gave me a chance to be creative.

Crocheting gave me a chance to utilize the artistic side of my brain, the part that rarely gets a chance to shine when you’re taking care of babies. It was refreshing to think about colour palettes and texture and drape. I would notice colours in wall tiles and be inspired for a patchwork afghan. I would notice the delicate stitches in a woman’s sweater in the elevator and wonder what fiber it was made from and how I could achieve a similar look. I saw potential for inspiration everywhere. I felt like an artist again.

crocheted basket

It provided me with a distraction.

I recently watched a TEDx talk about emotional hygiene (Guy Winch). He talks about the unhealthy psychological habit of ruminating — the mental act of replaying upsetting scenes in our minds, over and over again. As he explains, the urge to ruminate seems so important that it can quickly become a habit which eventually jeopardizes our psychological and physical health. However, studies show that even a two-minute distraction is enough to break the urge to ruminate in that moment. Given enough practice, we can break that damaging habit.

I was caught up in a constant, dangerous habit of ruminating at Felix’s bedside. I needed a safe, constructive distraction. In the time it took me to add sixteen stitches to my wool treasure bowl, I was able to break through yet another urge to ruminate, repairing a bit of my psychological health.

* * *

Now, I’m sure there are many different crafts that provide similar therapeutic experiences. Knitting, embroidery, needle-felting, drawing/sketching, and colouring come to mind. If I spend much more time in hospitals or similar environments I hope to spend time learning or developing some of these skills, too.

One advantage of crocheting is that it requires so few materials to begin, making it portable and inexpensive. All you need is yarn and a single hook (and a hook typically costs about $2). I could pop most of my projects in my purse and take them with me if I wanted.

Crocheting uses a combination of creativity, repetitive movements, and problem-solving skills. All of these things kept my mind busy and honed my mental abilities in a productive way.

And there is so much you can make with a few basic skills, from stuffed toys to clothing to housewares. You’re bound to land on a project that excites you. Blankets? Hats? Lace doilies? Dolls? Softies? Dish rags? The possibilities are endless.

I hate that I had to go through this, but I’m grateful for the opportunity to pick up this amazing skill. I will have it now for the rest of my life. Crochet will always have a special place in my heart.

Have you experienced something similar? Have you found some other practice or craft that has helped you through troubling times? Do share!

What I’m Into: April 2015

easter blogEaster at the Ronald McDonald House

Felix 5 monthsNo NG tube for passport photos

(Note: I wrote this while still in the hospital, since I assumed I would be a little busy for blogging in the first weeks back home. Rest assured we are thrilled to be home and I will update you on the details soon!)

April was our fifth and final (for now) month in the hospital with Felix.

It was still a hard month, but it was infused throughout with hope. We knew going into April that we would probably be taking Felix home by the end of it.

There were still hard days and lots of tears. Especially the day Felix pulled out his NG tube and it took us TEN tries to get it back in. And the day I gave him his injection for the first time. And the day I found out what’s really in the formula we’re giving him. (Corn syrup solids are the first ingredient?!? Oh Lord have mercy on me. Corn syrup solids. My baby’s organs and bones and brain are being grown with corn syrup solids.)

And even though we were still trapped indoors for most of it, way up on the sixth floor, spring had a hopeful effect on us. And Easter. Our thoughts turned to Resurrection more than once as the snow melted and little crocuses popped up in the flower beds.

Death and new life. They come together.

And here’s what I’ve been into:

Books

enders game

Ender’s GameOrson Scott Card. Wow. WOW WOW WOW WOW. So many surprises in this thrilling, intelligent sci-fi novel. (This book confirmed once again that my heart eternally belongs to YA fantasy and sci-fi.) Though it differs in a lot of ways, the book reminded me of the TV show Firefly — it shares a similar mood and magnitude. Entire planets and civilizations at stake. Plus there’s the rarely-explored power of love between siblings. A fascinating, deep and moving story. (Also: Ben read this book at the same time as me — hence the two bookmarks — and he obsessed over it as much as I did. So I also recommend it for the fiction-averse dude in your life.)

Little Women – Loise May Alcott. Another classic I’d never read. I have mixed feelings about it, but mostly positive. Jo’s character was fascinating and wonderful. A few chapters were kind of boring. The realistic ending caught me completely by surprised, and I wasn’t happy about it at first, but I guess it was okay. I really loved Laurie and would have liked to marry him myself.

Movies

Ender’s Game. We watched this within hours of completing the book, which was probably a bad idea. We weren’t super-impressed, but that’s not surprising. I can’t imagine how anyone could translate and compress a story of that length and grandeur into a two-hour film. Using child actors, no less. We never felt convinced that Ender was the great leader he was supposed to be. Nor did we get the chance to develop any real affection for him. It was just razzle-dazzle special effects.

Television

We are SO SO SO SO sick of TV. We’ve watched the pilot episodes of at least a dozen different TV shows in four different genres and we couldn’t appreciate any of them.

Crochet

I finally finished the black-and-white striped blanket I started last month. (Hoping to post a tutorial soonish.) I’m very pleased with it.

black-and-white cotton crocheted blanket

I decided that now I’d mastered the basics of crochet, it was time to move on to amigurumi.

I started with a simple monster, and then tried my hand at this adorable chibi doll:

crochet amigurumi chibi dollThe tutorial can be found here. I used worsted weight acrylic yarn. I’m still a slow crocheter, but I started it in the morning and finished it by midnight that day. So that tells you how obsessed I was.

I also started to experiment with felting, which brings me endless delight. Like this bowl:

felted bowl

So  that’s what I’ve been into. How about you?

Note: This post contains affiliate links. Thanks for supporting Becoming Peculiar!