What I’m Into: February 2015

February 2015 will go down as the Month of Crocheting.

Ben and I were sitting on the hospital cafeteria one afternoon early this month and I was weeping into my pizza AGAIN when Ben suggested I take up a hobby. I have so much time to just worry about my sweet baby and think about how horrible this all is . . . he thought I could use a distraction. Hadn’t I always wanted to learn how to knit and/or crochet?

I immediately perked up. Yes. It was PERFECT.

I don’t know if you knew this about me, but I’m an obsessive person. Once I get started on a project (or book or TV show . . .) I can think of nothing else. The need to eat,  sleep, and use the bathroom (let alone care for other members of my family) become inconveniences I have to work around to get back to my thing. That’s part of the reason I have avoided taking up some of these hobbies so far.

But when I’m in the hospital for months on end? Nothing could be more perfect. It has been wonderful for my soul. It’s like meditation for my hands.

I asked around on Facebook, and a friend recommended Crafty Minx’s free Crochet School. (She’s wonderful and thorough and provides lefty videos.)

First I learned all the different stitches and techniques. . .

crochet school

And then I started on a few simple projects. The goal was mostly to master simple crocheting. As with this bowl . . .

crocheted bowl(Tutorial by Bunny Mummy. I used only the same two colours of yarn throughout)

And this small granny square afghan for Lydia’s doll . . .granny square blanket for doll(I used some clearance acrylic/wool yarns from Michael’s.)

Also this scarflette  . . .

crocheted scarflette(tutorial by Pretty Prudent. I used Wool-Ease Thick & Quick yarn in Grass.)

Followed by this chunky basket . . .

crocheted basket(Tutorial from A Handmade Year. I used Wool-Ease Thick & Quick in Barley and Wheat.)

I’m currently working on a blanket for Felix.

As a result of all this crocheting, I didn’t do much reading or movie-watching. Except for the following:

Books

Veronica Mars novel

DID YOU GUYS KNOW THERE WAS A VERONICA MARS NOVEL?! Two of them, in fact?? Written by the creator of the TV show? No one told me this while I was obsessing over the show all through October-December. I just happened to learn of its existence while randomly surfing through social media. And I immediately decided I HAD to read it.

I’m just over halfway through and I’m loving it. The Thousand-Dollar Tan Line is a sequel to the movie, and it takes place a few months after the events of the film. It’s just like watching a VMars episode. Thrilling mystery, witty banter. The characters are written perfectly. I can imagine every line of dialogue coming from the actors’ mouths. It’s a pretty cool experience, actually. I’ll be sure to pick up the next one when I’m done.

Television

Flight of the Conchords and The Office

These are two of the funniest TV shows I have ever watched in my life. Murray from Flight of the Conchords is possibly my favourite TV character of all time. Re-watching these hilarious shows and laughing my butt off are so therapeutic.

That’s what I’ve been into! How about you?

Linking up with Leigh Kramer!

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It’s Not All Bad: Our New Reality

holding felix(Photo from a few weeks ago.)

The first few weeks here at the hospital after Felix’s diagnosis were hell. Watching every dream I’d ever had for Felix’s childhood crumble, one after the other.

But things have been better these last few weeks.

Most of all, because he’s been doing so much better. If you can look past the central line in his chest, the feeding tube in his nose, and the fact that he’s in isolation, he seems like a pretty normal and happy baby. We cuddle and play with him. He has favourite toys and favourite ways of being held. He interacts with us and really wants to learn how to crawl.

But we’re also adjusting to our new life and our new identities. And it’s not all bad.

New Identity

I’m no longer a crunchy mom. I’m the mother of a hospitalized child with a rare, life-threatening disease. I have no say in what, when, or how my son eats (which, for the record, happens to be 90 mL of Neocate formula, every three hours on the dot, via NG tube), what he wears, or where he sleeps. This was a very difficult adjustment to make, but it’s my reality now.

And there’s some liberation in having no say.  I don’t bear all the responsibility if something goes wrong. And I can focus my energies on other aspects of his well-being, like making sure he’s getting enough snuggles and exercise.

And I’m a part-time caretaker to Lydia now. I’m no longer her entire universe, and she’s no longer mine. That gives me more time for Felix, Ben, and other aspects of my life. It’s painful when I think about it, but  don’t cry about it every day any more. I know she’s happy and having lots of fun with her grandparents, aunts and uncles. She has dance parties every day with her Auntie Maggie. She plays outside in the snow with her Uncle Joseph. She got to pet their new calf the day after it was born and she’s making friends with the dogs, especially Arwen. She’s doing great.

I’ve even been toying with cutting my hair (like, really cutting it . . . as in pixie short) to reflect this new identity. I’m not the woman I used to be or would have chosen to be. But I’m still an okay person and a good mother.

New Routine

Now that we’ve gotten really settled into our lives at the hospital and Ronald McDonald House, we rarely even think about how weird it all is. We’ve got a routine that involves getting plenty of sleep at night and eating three times a day. We usually manage to get out at least once a day together — usually to a book store or a yarn shop, or to get groceries or lunch.

We don’t even have to think about what we’re doing when we “gown up” to enter Felix’s room — it’s natural and automatic now. Every time we go to touch him we sanitize our hands and put on a new pair of gloves. Feeding Felix is almost effortless: opening up the syringes, checking the placement of his NG tube with the stethoscope, and measuring out the formula don’t phase us anymore. It’s just part of our daily routine.

My life no longer revolves around food/cooking from scratch, as it used to, but rather around making sure Felix is well and comfortable in his room. We eat to survive — whatever is available. I don’t think about GMO’s or pastured meat or good fats — I just eat what’s there (in the RM House dining room or the hospital cafeteria) and what’s appetizing.

It gives me a heck of a lot more time to think about other things. I’ve been able to pick up hobbies and read books I’ve never been able to consider before — like crocheting and fiction. It’s kind of nice to get into these things, honestly.

Life in the Moment

We have no idea what’s ahead for us.

We can’t make plans beyond a couple of days in advance because we have no clue what next week will bring. All it takes is another fever or cough or bad blood count to bring everything crashing down again.

We don’t know if or when we will ever take our son home (although lately things are looking really positive. Maybe in a month or two!). We don’t know whether he will get into gene therapy (though we had a meeting on Monday and found out we are definitely on the waiting list.) Until recently, we couldn’t even bring too many days’ worth of clothes into his room because we never knew where he’d have an IV in his body (in his foot, his hand, his scalp) so we didn’t know what kind of pajamas he’d be able to wear.

All this has forced us to live for the moment.

For the first few weeks I felt perpetually sick with worry, thinking about his future. But these days I don’t. I can’t think about his future because I have absolutely no idea what his future holds. It’s a waste of energy to worry about it.

I wake up every morning thinking about the day at hand and nothing else. And lately, the days have been looking good. So I focus on that.

A Gentler Love

Over the last few months I have had to come to terms with the fact that I will very likely outlive my son. Whether it’s in a month or a year or twenty, there’s a good chance I will have to say goodbye to my baby before I go.

I have always taken it for granted that Lydia will always be there. That she will live a long, healthy, productive life. Of course, there was no way I could actually know that this was true and I still don’t. But I felt like I did.

I feel like I have always had a death-grip on her as a result. I CANNOT lose her. I CAN. NOT.

But it turns out I don’t necessarily have a choice.

This experience with Felix has shown me how little control I have over my children’s lives. And I’m even starting to see that I would be able to survive their loss. It would be horrendous, but survivable.

My grip on Felix has been a lot gentler as a result. I love him so much. But I can’t hold him in a death-grip. I have to be prepared to let him go. I will love him the best I can in the meantime, but I can’t force him to stay.

It’s a gentler love, in a way. He doesn’t belong to me. I know this now.

Felix Kicking Surgery’s Butt

felix 3 months old

Monday was a pretty lousy day for Felix.

He’d lost the IV in his foot the night before, and the nurses needed to start a new one to administer his daily meds. The IV specialist wasn’t in, so the regular nurses had to give in a try. When they couldn’t get one in after several tries, they called someone in from the NICU.

He got poked twelve times over the course of several hours before they called his primary doctor who told them to give up. He had wounds all over his scalp, hands and feet. He slept pretty much the rest of the day after that. Screaming that much can really wear you out.

The next day he was scheduled to get a central line put in — a tube that goes right into his chest into the major vein above the heart. He’ll need to be on constant intravenous medicine for the next several months, and we just can’t keep poking him for regular IVs like we have been. He had to fast for six hours, and be sedated and intubated for the procedure.

He took the whole ordeal like a champ. After he woke up he stayed awake and alert for the next two hours. It was like the surgery had never happened. By the next day he was on his tummy (as seen in the photo above. You can see the dressing under his sleeper). He got one dose of Tylenol and then never got any other pain med.

And besides the day of pokes, he’s been doing really great for the last two weeks. No fevers, no illnesses, nothing. Just a happy little guy, growing and learning. And we’re grateful for the central line — now more delicate IV’s in his head and feet. We can put normal clothes on him! He can wear hats! They can even take blood from this line. So instead of getting poked several times a week (IV’s, blood tests, etc), the only needles he’ll be getting are his twice-weekly injections.

Because he’s been doing so well, we got the green light to start working towards oral feeding again but so far he hasn’t been able to drink anything. He doesn’t remember how. It’s been over a month since he got anything orally. That’s the next big thing we’re going to work on.

But all in all, we’re feeling pretty good these days.

Thank you, God, for a couple of good weeks.