When Normal Isn’t Normal

Sunday afternoon was an event eight months in the making: Nyana and four of her best buds from her hospital days finally got together for a play date outside the NICU walls. All five of them were born within three or four weeks of each other—Nyana the first on September 20th, Oliver the last on October 14th; all within a few hundred grams of each other—Nyana the heaviest at 1,110 grams and Nicolas the smallest at 895 grams. To put that into perspective, the large brick of butter you can buy at Safeway is 454 grams. These babies used to be tiny.

Nyana meets her NICU-mates

Nyana meets her fellow NICU graduates. From left to right: Benjamin, Oliver, Nyana, Nicholas, Trajan.

We made it a potluck affair and arranged a picnic in Stanley Park; we got lucky and the weather cooperated, and Sunday gave us one of our first true days of summer here in Vancouver. As we lunched on chicken salad sandwiches and couscous salad and macaroni pie and sticky buns, we all reminisced over the bad ol’ days and marvelled at how well each of our kids was doing on the outside. Even Mama Smug accepted the invite and made an appearance, and despite her arriving late and leaving early, it was nice to see her and catch up. Months in the NICU can bring out a totally different side of people sometimes.

The kids were all well-behaved and it was wonderful to have a baseline of children with similar beginnings to compare Nyana to. A few hours in the park with her former NICU-mates reassured me that our medical team isn’t exaggerating when they tell me that she’s doing phenomenally well developmentally. Only Nyana and her NICU boyfriend were exclusively sitting on their own; the other three were in some stage of finding their balance still. Nyana was talkative and smiles for the grown-ups, though still a bit shy and playing strange with the boys. It was comforting to look around the gathering of picnic blankets and see four drool-drenched bibs and onesies just a few feet away, knowing we weren’t the only ones with a sudden overflow of saliva.

A few missed naps and a few sitting fails led to a handful of grumpy babes ready for home. We packed it all up and said our goodbyes and promised to do it again in August. And yet later that afternoon, despite the good time had by all, I found myself feeling sad and somewhat weepy. For as much as Don and I try to normalize our situation, our reunion—as with all play dates thus far—was just another sad reminder that Nyana isn’t other babies. I’ve joked for months that one day I’ll trade her in for a wireless version, but I’m getting tired of joking, tired of pretending that I’m loving being tethered to a bipap machine or an oxygen tank or a food pump or a sat monitor 24 hours a day. It’s limiting and it’s frustrating and it’s not normal, no matter how normal Don and I try to make it.

It’s difficult to put her in the swings at the playground when she’s attached to an oxygen tank. I can’t leave her unattended with her belly exposed for fear of her grabbyhands yanking out her g-tube. Any time we leave the house for more than 90 minutes we need to ensure that the battery that powers her lungs is fully charged. None of that is normal. Yet to us, as parents, it’s all we know, so it seems pretty normal to us.

Also becoming normal to Don and me is the strangeness of strangers. The way people obviously avoid looking at Nyana and her hose-for-a-nose, because not looking is better than staring. The way strangers at the grocery store overdo it with the compliments, telling me how beautiful and strong and wonderful she is, because spewing meaningless niceties is easier than asking questions. I know people think they’re being polite by keeping to themselves, by not asking questions and by not staring, but they almost make it worse by seeming to avoid the issue all together. I like the bluntness of the people who just come out and ask what’s up. Why does she have a hose for a nose? How long will she need it? Is she going to be OK?

We knew it wasn’t going to all be sunshine and lollipops on the outside, that we’d still have our struggles and we’d still have our off days. But I was surprised to find myself awash in such sadness after our reunion on the weekend, an afternoon that was by all accounts a marvellous time, a day I’d looked forward to for weeks and even months. I suppose it’s to be expected, though; much as we try not to compare her to other kids, it’s impossible to not feel some jealousy at the ease of which other parents are able to maneuver their children. I know it’s temporary and I know it’s all worth it in the end, but the tubes and the wires and the hose-for-a-nose are really starting to overstay their welcome.

I get caught up sometimes thinking about just how much a part of Nyana’s life her tiny beginning is going to be. Will she ask us to tell her stories at bedtime about the Sunshine Brigade that carried her through her first year of life? Will she brag to her friends in highschool that she was barely two pounds when she was born? Will she find herself working in a profession that helps all the other babes on the I Was A Preemie Too! wall? Interesting that for all the lack of normalcy Don and I continue to endure, we do it all to ensure she grows up to be as normal as normal can be.


About Mrs. B

Wife, mother, marketer--not always in that order. Lover of fine food, good company, and exceptional grammar. Mother of one former micro-preemie and one full-term monster baby. Building childhood memories in Vancouver's suburbs.
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11 Responses to When Normal Isn’t Normal

  1. Stacey & Lucy says:

    What is Normal anyway????… I have a used to be 645 gram baby with a surgery coming up on the 20th… still on lung treatments and working hard 3 times a week with OTs and PTs to try to keep up with a 9- 10 month old when she is 14 1/2 months…. it will all work out in the wash in the long run…she is my normal and it is all I know and love!!

    Hugs to her SS


  2. Twiggy says:

    Nyana is bridging her own normal. She’s adorable!

  3. Tom Wiebe says:

    Ny looks pretty darn normal to me. Like the NICU experience itself, the oxygen/food pump phase will one day be nothing more than a distant memory. We got pretty emotional after the picnic too, after so many scary days and nights in the NICU for all of us, it was great to see how amazing all the kids are doing now. I’ve got friends with ‘monster babies’ (our name for term babies) the same age as our kids who aren’t as far along developmentally as any of the five of our kids.

    Our kids have all come a long way in a pretty short time but, it’s important to remember that we’re pretty much still at the start line. All of this will pass pretty quickly in the grand scheme of things.

  4. Juju says:

    Just adorable picture. Can you all get together same place every year and take the same picture? Wouldn’t it be a kick if they kept it up when they got to be adults?

  5. Tasha says:

    I agree with the previous poster…a yearly pic would be so neat to see!

    Love your last sentence.

  6. Linda says:

    I can only imagine the frustrations you are feeling…having a beautiful baby girl looking so healthy on the outside but still so sick on the inside. And I can imagine how sad you must feel at times when you can’t do the things that “normal” babies get to do with their parents because you are tied down to all of the machinery that keeps Nyana alive. But Nyana is so strong and she gets that strength from her Mum and Dad. You and Don are Nyana’s rock and somewhere in that rock is a very large diamond which is what Nyana will become in another few years. She will have you to thank for her being a brilliant gemstone and you will be so glad you perservered, hose nose and all.
    Love you all so very much,

  7. Janice Taylor says:

    She’s doing great! She probably won’t remember being tied up once she is untethered for about 6 months. My friend’s 2 1/2 yr old didn’t remember breastfeeding and he did that for the first 2 yrs, which I thought was incredible. In the meantime, its hard, but she really is doing great, and we are glad she could join the group.

  8. ShannonB says:

    She will definitely brag about it when she is older! My sister is a NICU grad, and I remember feeling jealous of her because I didn’t have any cool “when I was a preemie” stories to tell. The best I got was telling people that my mom went into labour with me and had to call my dad at the bowling alley, and he decided to finish his game before leaving to take her to the hospital. My sister’s story has way more flare.

  9. RoxiP says:

    Your ability to be so open and honest about your feelings and so eloquent about sharing them once again leaves me with tears in my eyes. Nyana is teaching all of us lessons, even those of us with “monster” 14 year olds (and I mean that in so many ways…LOL!). I am reminded daily to thank God for my beautiful daughter who is healthy and relatively normal, despite her single parent! Thank you for allowing us to go on this journey with you. I look so forward to the day when Nyana is free from all her medical equipment and driving you crazy nonstop running around tearing up your apartment.

  10. Olivia ♡ says:

    *nods vigorously*. I wonder the same thing about if he’s going to brag to his friends about his NICU stories haha.

    On another note, the Bipap Adventures will be just a blip in her life, you’ll see. I’d like to think that although they may not remember these experiences when they’re older, it will make them stronger in the long run. Kind of how I make the joke that Noah isn’t colicky because he’s gone through so much already that he SHOULD have been crying about 😛 haha.

    Love and hugs ❤

  11. Pingback: The End Of An Era | Adventures Of The Sunshine Brigade

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