Thursday, February 18

To have a baby with chronic illness, or not

I think we had this conversation two billion trillion times. Ben squirms when I use nonsensical numbers, but I really need to, for expressive reasons. In my acquaintance of people with the same illness, the majority are not partnered and do not have children. I am privileged to have been in a serious relationship before my illness got serious. However there was one friend with ME/CFS who urged us to have a baby. She was the one who had cleared out every baby item after her firstborn, vowing never to go through it again. Three years later, she bought it all again and welcomed a second baby girl. Despite her encouragement and our longing, the idea of introducing a baby into our just-floating existence was frightening. The possible health cons list was just as long as the pros; it was terribly unclear. People twice my age say they are far too tired to look after new babies; yet my beautiful fifty-year old mum has at least double my energy. I’m on a par with my grandma.

If an idea won’t fade from your mind, it generally needs acting on. So we took the plunge. You’re supposed to do radical and ludicrous things in your youth, and we chose the most risky thing we could conceive.

Having support back stage, that is crucial. A few days before the appointed birth day, Ben got the flu and collapsed twice in the kitchen. This was a huge concern for us, as we knew he wouldn’t be allowed in surgery or Special Care Nursery with the flu. He took time off work, and our parents cooked so many soups and dishes that we were both able to rest and recover. Our lawns were done, twice, our dog cared for beautifully. Mum sat with me for hours on hospital days, and drove me around. We should probably have asked for support earlier in the horror that was my first trimester, but when we did, it was there. When we had our daughter, between our church family and our blood family, Ben didn’t have to cook for over 5 weeks. It was astounding. My private midwife visited and messaged me till I felt confident. There were so many valuable pieces in our support puzzle.

Harder is the lovely tradition of visiting new babies. It’s theoretically really nice. I simultaneously wanted it and couldn’t handle much of it. There is a real irony that you have insufficient energy for visitors at the best of times, and then at the worst of times, surgery and newborn, you have more visitors than ever before. Your gate keeping skills need to be honed before, or rapidly honed during, because otherwise there will be an extra sick, very teary mother. It’s ideal to share new baby cuddles, but when life is not ideal, something’s got to give. I wish more people could have enjoyed her newness but Mr. Baruch was onto something when he said that ‘the ones who mind don’t matter, and the ones who matter don’t mind’.

While I was pregnant, our main concern was how we were going to keep a tiny person cared for at night. We decided that flexibility was our strategy, we would do whatever worked. If we needed to co-sleep, we would do that. If she needed to be formula fed so that our mum’s could do night shifts, we would do that. Our night regime evolved after I developed vertigo. We were the couple who had never spent a night apart since we got married, but we found that if Ben sleeps out with her and brings her in for a feed, I have the strength to care for her during the day. He deals with grunts, re-settling, and checks for actual hunger, so that my role is milk-and-milk-alone. At first he started on the couch, and then we resigned ourselves to the regime and borrowed a mattress. It’s kind of sad, but it’s also kind of awesome that as a team, we have a breastfed baby girl, a mama able to care for her during the day, and a papa young enough to be able to cope with work too.

Would life be easier for me if she were bottle fed? Yes. It’s a hugely personal decision for sick mamas. But as with all decisions, mine came from the journey I have been on, a journey of sickness. I don’t feed in spite of my illness, I feed because of it. I longed to give her the gift of breastmilk. It’s the earliest gift of health that I can bestow, my body has made plenty of it, and so we are prioritising it. I have unresolved feeding pain, but that’s another story.

In the day time, I am grateful for a baby who sleeps. I lie down for all her sleeps, three or so hours a day. If she didn’t sleep and did cry, I would need her grandmas to let me get a daily sleep. But our quiet life, it works best for the two of us. No there aren’t many outings yet, but that’s ok. I’ve been mostly homebound without a baby too, and this is 100% better. When she’s older and drinks less milk, she might go to her grandmother’s houses for plays like her namesake book, ‘Marigold in Grandmother’s House’. She might sleep through too, breastfeed less, and I might start to feel better again. We were given a placid little girl, sparkly, but not fussy* or teary. That’s the best gift you can be given when you’re underpowered.

It has been extremely physically challenging despite flexibility and support, but emotionally, there aren’t words for how grateful we are to have Aurelia in our world. That leap, it hurt like nothing else, but it also took our lives up numerous notches on the joy scale. There is more laughing, singing, goofiness and hugging in our home than ever, groans followed by euphoria, and fulfilled sighs at the end of the day. Worth the risk, and a season (or eight) of extra-ill.

* She was not fussy for the first few months, and then immediately after I penned those words she took up five-month-old extensive grizzling and all day demands, I suppose because she is too grown up and bored for quiet lying and happy bouncing anymore. Sparkly and fussy. 

Wednesday, February 10

131 days

It came. 

I choose to record it, because I will need to know again that tunnels do end. One day I will read this in the dark, and it will remind me that storms, tunnels, crap and all the other analogies for bad times, they will not endure forever.    

131 days after birth, came a day with no vertigo, mastitis, or virus, and Goldie, Ben, and I slept till morning.
There is a time to dance, and now is that time, with a few plies and some rusty happy allegro. And the little dove just coo-ed a major third, so there's music too.

Monday, February 8


I’m on the couch, baby at the breast, Tchaikovsky playing on the stereo. Huge eyes stare up at me, searching mine, and on being met with a smile, she unlatches to return one. I know it’s better than the one I gave her. I’m swamped in a surge of such great love that I need to eat her.  I resist because of the same love. I’ve just been laughing because the drool was pouring from her chin as her eyes nearly popped from her head staring at the cushion with birds, her favourite one.

My new normal.

I’m not sick and lonely anymore, just sick.

My throat is lipstick red, with lumps. I knew well before I looked in the mirror, because I woke repeatedly from the pain of trying to swallow all night. It coincided with the first night she had slept nearly eight hours. How could I miss this first chance at real sleep after 130 broken nights? The cruelty of missing out slaps me in the face. I rage with the unfairness. I’d just been celebrating that mastitis and its aftermath was finally going to leave me in peace. The vicious scabs took far longer to heal than my doctor or lactation consultant was familiar with. I fed round the clock, biting my lip, using birth breathing, and rocking back and forth vigorously, like an overwhelmed child; ostensibly for her, but entirely for me.

Now that the pain was lesser, and there were fewer fully dizzy days, hope was peeping through the cracks. Maybe these months of extra-suffering were about to ease, and I would drive my car to walk in a beautiful spot. Or, bake a cake for the first time since having her. I felt like I was just taking a tentative step out of bliss-dark-land I’ve been in for months.

That’s why my reaction to the raging throat was more despairing that a cold should really produce. Melodramatic, to be honest. That’s why I didn’t feel refreshed when she took her longest sleep ever, because my other full time job, existence in this body, was in full flight all night.

I lie in bed, lemon tea with Manuka honey to soothe the pain. Drenching myself in facts to gently appease the powerful feelings. Truth, that I am loved, I am not forgotten, that the virus will pass, and I may still be able to go and buy my husband a birthday present this month. Fact, that these days are still ridiculously precious, they don’t need to be pain-free to be meaningful. They don’t need to be normal to be precious. This is far more meaningful and precious than driving my car, going to yoga, seeing my friend. I’m only missing out on the things I used to do with an unsatisfied pang.

I can hear a cooing dove from my bed where I’ve been conducting a little fact-based therapy. I have felt my pain, and now I go and look at the little poppet lying in her cot talking to the pom poms I made her. I get another day of full time smiling and singing, and she will do those things back to me. My day will be interspersed with moments of physical grief, sometimes despair. Followed by fact.  And then it will all be overridden by joy at unexpected moments, over and over.

My new normal.