Full Days, Leisure Time and Headcheese (Guest Post)

Very pleased to continue my series on moms and work today, in which I invite mothers to consider these questions: how do you manage to work and also care for your kids, both in a technical sense (how the time is divided up), and an emotional one? (Be a part of the series: send me your thoughts!)

Today I welcome guest blogger Deborah Churchill who discusses how much effort it takes--or should take--to do the work of a mother. Does reading the Little House books make you feel weary, or, as it does Deborah, quite lucky?

Full days, Leisure Time and Headcheese

I’ve been feeling that my days are pretty full. That is, until I read Little House in the Big Woods by Laura Ingalls Wilder (shameful: I’d never read it before, but I am British).

There’s a chapter in it about butchering the pig. It’s full on. The pig is slaughtered, scalded and scraped. The meat is butchered, salted and smoked. Then, just when you’d think that, really, they must have had enough of the pig-work and surely it’s time to catch up with a box-set (excuse the anachronism), Ma chops and boils all the last scraps making the (to my mind unspeakably unappetising) headcheese. It got me thinking.

On Mondays I get in at 8 and do a short day at the office. I’m contracted for a three days week but I’m lucky enough to be flexible with my hours. It means that on all but one day of the week I get to pick my kids up from school when they finish at 3.25. I leave almost no contingency for the journey time; it’s pre-rush hour. I almost always get away with it.

So anyway, Mondays, we execute a swift turnaround. Snacks, wees, goggles and head to the pool. It’s fun; a family swim followed by Felix’s lesson. Then it’s back home for kids’ tea, spellings, handwriting practice, put a load of washing on, put a load of dry washing away, make tomorrow’s packed lunches, unpack the dishwasher and chivvy and chide the children to clean teeth, wash faces and get ready for bed. All climb into my bed for cuddles and stories. (Side note: I thought Little House might be too advanced for my youngest. Imagine my gratification when halfway through the chapter on maple syrup he asked a technical question about sap extraction.)

You know what? By the time it hits 7: I’m finished. I call my partner and ask him to bring something home for dinner. I’m pretty relaxed about this. I’ve done enough for one day, right? 

I can’t help wondering what Ma Ingalls would think about my sudden collapse of effort. Of course our times and situations are very different. But you don’t have to go back far in my family to find a much tougher lifestyle. My grandmother (95, oldest of 10, with six children of her own) had a far more gruelling day than mine. Not only were all her household chores harder to do, the expectations were also different. She cooked three meals a day, every day, for at least 8 people for many years. It would tip me over the edge in less than a week.

I have no intention of signing up for the servitude endured by countless women. But, next Monday, I’m going to take a moment to remember that I’m living in a very privileged place and time. The idea of leisure time is so ingrained that I consider it my right. I’ll try to feel less hard done by and, who knows, I might even cook dinner. If I do, I’ll consider it the headcheese.

Deborah Churchill lives outside London in Kingston-upon-Thames and works part-time as the editor of a property magazine. She and her partner Allan have two children, Annabel, 7 and Felix, 5. She’s recently become interested in preserving food and made 10 jars of marmalade over the weekend. An interest that can only be reinforced by reading more Laura Ingalls Wilder.

Milo's Story

Last week, the following remarkable Facebook status flashed across my feed:

“I just learned that 64 percent of babies with spina bifida are selectively aborted after being diagnosed. That number is heartbreaking and we need to change that. Yes Milo has spina bifida, yes Milo (and all of us) have some really really hard days. But Milo is happy, Milo is thriving and best of all Milo is doing almost everything the doctors told us he wouldn't. Yes he has to work a lot harder, but he does it all with a smile and his strength and courage is an inspiration. October is spina bifida awareness month- if you have any questions about spina bifida or Milo's story, please just ask we are always happy to share and brag about our rock star.” --Tova Berger Nicholson

Tova and I grew up in the same Jewish community on Long Island. We have not kept in close contact, so I hadn't known that her son had spina bifida. I was struck by the honesty, sincerity, and joy in her post. Since I know very little spina bifida, I took Tova up on her offer to share Milo's story. I wanted to hear about the challenges and realities of raising her son, and I wanted to help her get the word out about the condition. But mostly, I wanted to hear more of her exuberance about parenting Milo. Below are Tova's answers to my questions.

How and when did you find out that Milo has spina bifida?

When I was 16 weeks pregnant I went in for the routine quad screening blood tests. A few days later I got a call from my doctor telling me the results were concerning: a 1 in 4 chance of a neural tube defect. We got the call on a Friday afternoon and there was literally nothing we could do--it was awful. We had to wait until Monday morning to go in for a level 2 (very detailed) ultrasound. We found out that morning, via ultrasound, that my blood results were not a false positive. Our little baby did in fact have a neural tube defect, spina bifida. It was a day we will never forget.

What was your reaction? Your husband’s? Your family’s?

The flood of emotions is hard to describe. In the moment we found out I was completely heartbroken and guilty. I can remember, very vividly, the doctor who gave us the results telling me over and over again that this wasn’t my fault. But as a mother, its hard to hear your baby is ‘broken’; how could I not be to blame? Alex, my husband, is always extremely optimistic, and in that moment his world shattered. Why us? Why our baby? We knew so many other people pregnant at the same time- why was this happening to our baby? The emotions changed over the course of the pregnancy (and they are still changing). I became really angry at points. I learned from some other families who we met through spina bifida connections, that you have to go through a grieving process to arrive at acceptance of the situation. It’s a weird thought to have to grieve, but it's true. You have to grieve over the idea of a ‘perfectly healthy’ baby and come to terms with spina bifida. Alex and I went through it together--when I had a down day, he picked me up, and vice versa. We never allowed both of us to be down at the same time. We spent the first week after the diagnosis in our apartment, watching movies and crying a lot. After that week we picked ourselves up and decided we needed to do whatever we could for our little baby, and that really helped get us through. We still have our down days, but they are so rare that when we have them, we allow ourselves to have a good cry and then move on.

I think our families all put on a brave face at the time. No one wants to hear something is wrong with a family member, especially an unborn baby. But they all stood strong and gave us the support we needed. They cried with us when we needed them to, but more importantly they picked us up when we needed it most. They reminded us over and over again that this little baby was ours and we would ALL get through this together. They are still a very integral part of our support system and a major reason why Milo is doing so amazingly.

What is spina bifida? What are Milo’s symptoms?

Spina bifida is a neural tube defect. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception, when most people don’t even know they are pregnant yet. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord.

There are various forms of spina bifida ranging in severity. Myelomeningocele is the most severe form, but also the most common. In this form, the baby's spinal canal remains open causing nerves to be exposed. When a baby is diagnosed with myelomeningocele, surgery is performed usually within 24 hours after birth to close the back. Hydrocephalus (an excess of cerebrospinal fluid on the brain) is unfortunately something that goes hand in hand with spina bifida; I think about 80% of children born with spina bifida will also need a shunt to control the hydrocephalus. A shunt is placed in the brain to help drain the excess fluid, usually into the stomach.

Milo was born with myelomeningocele and does require a shunt. He was born, via c-section, three weeks early because the hydrocephalus was increasing faster than the doctors liked. Milo had his back closure surgery 24 hours after birth as well as his vp shunt placed. It was really, really hard--Milo was born in the morning, and I didn’t even get to see him until that night. As soon as he was delivered they had to take him to the NICU to protect his open back and monitor him.  Alex and my parents were able to meet him, but I had to wait since I was recovering from surgery. It was the longest 12 hours. We couldn’t hold him until he was three days old. 

But, from the beginning Milo shocked everyone. He was released after only one week; two major surgeries and he bounced right back. When Milo was eight weeks old his shunt malfunctioned and we ended up back in the hospital to get it replaced, so another surgery. But again, he literally came out of surgery as Milo 2.0.  

The opening on the spine causes nerve damage; which nerves are damaged depends on where the opening is on the spine. The lower on the spine, the better for walking, but more issues arise with bowel and bladder. Milo does have a few issues in that area, but we will keep that private for his sake. Milo's ankles are pretty weak, so he uses little ankle orthotics to help him walk, although he can walk without them as well, which is amazing. The hardest thing about spina bifida is not only is it a wait-and-see game, but each case is literally so unique. We know several other people with the same level opening as Milo, and they each function so differently.

Think back to the time when you first found out that Milo had spina bifida. How does life as Milo’s mother compare to what you imagined it would be?

When you first find out your child has some sort of disorder, your mind runs crazy. When you have doctors telling you the absolute worst outcomes, it's really hard to think about life being normal. We were told our son would be a vegetable, have a low IQ, not be able to walk, wouldn’t be able to go to the bathroom, and would be in and out of hospitals and doctors' offices. We were ready to accept whatever we were handed, but, my god, life is completely different to what the doctors told us. Milo is incredibly smart--no one can get over his vocabulary and social skills--he may be behind in some physical aspects, but he more than makes up for that in cognitive development. 

Don’t get me wrong, it's not a walk in the park: no parent of a child with spina bifida will say it's easy. We have a different normal and while the first year of Milo’s life was hard and took a lot physically and mentally, it was our learning curve and we now are in our groove and we make it all work. I wish, when I was pregnant, we could have had a glimpse into our life now--we would have been able to enjoy the pregnancy so much more!

What is the most surprising thing about parenting Milo?

Milo has taught us so much. I never realized how much it's possible to learn from someone at such a young age. He has taught us to stop and slow down and really appreciate every little thing. When Milo wiggles a toe, that’s a huge deal--we celebrate that and I remember the first time I saw him do it--it's something so many people take for granted. But he has taught us to never take for granted even the smallest thing. Alex and I had a pretty strong relationship before we got pregnant with Milo, but through pregnancy and these last 2+ years he has made us such a strong force; very little can get in our way.

What is the hardest thing?

It has gotten easier, but it's hard to see what other children Milo’s age, and younger, are able to do, and without any thought. In the playground they are running, jumping, going up and down the steps alone. When we go to the playground, Milo can do it all, he just needs his mama or daddy right there to help him. It doesn’t bother him, which makes it a bit easier for us, but it does still break my heart a bit. Milo knows a different normal than we do and it's hard to remember that. We do try to make sure he doesn’t feel different--we want to make sure he knows he is like everyone else. Instead of needing glasses to see or hearing aids to help hear, Milo needs braces to help walk, and that’s ok. And we want to make sure he always knows that.

What is the best thing?

The best thing is seeing how happy Milo is. Milo has worked so hard to get to where he is today--he started walking at 25 months and he hasn’t looked back. He is so proud of himself with every thing he has achieved with his own hard work. There is nothing more heart-warming than seeing your child achieve something they have been working so long and hard on, but then seeing how proud he is of himself is just the best. Milo has the most amazing attitude and literally just goes with the flow and it really has helped him overcome so much. His happiness is everything to us and when we do have that rare down day, seeing him happy really helps put things into perspective.

What else would you like people to know about your child, your family, or this condition?

Milo is a normal 28 month old. He is doing everything a two-year-old is supposed to do: he goes to a two’s program, he loves to color, play with trucks, and yes, he has his tantrums. Milo has spina bifida; he always will. But it's just a part of who he is, it is not WHO he is. We are always happy to talk about it, but we don’t make it the first thing people know, as we don’t want him treated differently from anyone else. People have said, how great he looks and you would never know anything was wrong. And I know they mean well, and who knows, I might have said something similar to other families as well, before we were in our situation. But the truth is, there is nothing wrong with Milo. People hear a diagnosis and they shudder and apologize. There is nothing to apologize for. If you have met and know Milo, you know that he is more than OK. I keep going back to it, but his happiness is everything. Yes, we will have bumps down the road, but his attitude will help overcome those bumps.

Milo is a normal 28 month old. He is doing everything a two-year-old is supposed to do: he goes to a two’s program, he loves to color, play with trucks, and yes, he has his tantrums. Milo has spina bifida; he always will. But it's just a part of who he is, it is not WHO he is.

One other thing: if you are ever in the unfortunate situation of receiving a diagnosis for your child, no matter what it is, do your research. Doctors are the experts on some things, but not everything. Find families who are dealing with it every day and talk to them; they will know best and tell it like it is. If we had listened to what the doctors told us, who knows where we would be today, and the thought honestly makes me sick. There are always families out there that would love to share their stories and help others.

What resources (websites, organizations) have helped you the most?

While I was pregnant I found a spina bifida kids group on babycenter. Those families saved us during our pregnancy. Hearing their stories and seeing their children really helped keep our spirits up. In the last year I joined a few groups on Facebook, and it's really amazing what a tight-knit community it is. It's really refreshing to be part of community where everyone "gets it". It's a place where people come to share and brag when their child gets up on all fours, or sits unassisted, or takes their first step, and everyone is excited, as we all know that feeling.

What do you do professionally?

I am a stay-at-home mom. It’s so cliche, but so true: being a stay at home mom is the hardest job I have ever had, but by far the most rewarding.

How Does She Do It? Embracing Chaos

To paraphrase radio host and viral blogger Matt Walsh, being a mother is hard work. So it is for moms who are the primary full-time carers of their kids, as well as for those who are juggling paid work, full-time or part-time, in or out of the home, with the demands of raising happy and healthy kids. 

So how does the modern mom do it? The answer is obviously: a hundred million different ways. To get a taste of some of those ways, and to give my own voice a break, I asked a few friends a simple question: how do you manage to work and also care for your kids, both in a technical sense (how the time is divided up), and an emotional one?

My first taker is the talented and eloquent Clare Jacob, lawyer-turned-novelist and mom to three. In the piece below, she explains how her career evolved, and the challenges of working around her children's schedules. Thank you, Clare.

Embracing Chaos

When I started having children I was a lawyer.  There were not many women where I worked, and no new mother had taken more than three months off.  There was a kind of bravado about how quickly the women came back to the job, how little the arrival of a baby had changed them and how seamlessly they picked up their careers again.  Even before my son was born I guessed I wouldn’t be like this. Six months, I said I needed, not because it corresponded with a planned and managed retreat from motherhood but because that was the longest time I thought could get away with.  

When my son arrived and demanded constant feeding at my breast I was all too ready to give in.  His affection and will prevailed over my ill-defended proposal.  How I remember the bitter-sweetness of those first nine months, the sense of being, at last, really needed, but also of being adrift from the world that had filled my days. It was like being cast up on a desert island with no company but a very friendly animal. I was half infantilized myself; in the evenings my husband cut my meat so I could eat one-handed over the baby’s head. 

But by the time I did go back to work my son had become all too human, full of sounds and games, and leaving him felt like an act of violence to us both.   I was back in court but now I couldn’t prepare my cases at home in the evening or early mornings; I’d be sucked back into the feeding and cuddling. The next day I staggered through work only half present, worrying because my child refused the bottle and seemed so miserable at my departure.

By this time I’d acquired a nanny and it seemed natural to have more children now I was accustomed to chaos, to dashing in and out of work and motherhood,  to finding all barriers broken down.  So I had another child almost straight after going back to work, and then, very soon, another. ‘You are like a machine!” a friend said, but I felt more like an overflowing pot of porridge. And a new fear ate away at me: that I wasn’t doing anything well. There was too much crying. The first nanny said she was jealous because my son loved me more than her.  She couldn’t cope with three kids on a bus. Nor could her successor. It all seemed strained and wrong.

At the same time something else was growing inside me: a realization that there was something more that I wanted to create, something I could do without leaving the house, without the tears and panic when I was stuck at court and no one was at the nursery at pickup time. I wanted to write.   

It took some years before I made the transition from lawyer to writer, and my children, now old enough to have opinions, were initially skeptical.  These days they ask me how many words I write in a day and then use their arithmetic to tell me that I should on their reckoning have finished three books in the time it’s taken  to do one.  They fail to factor in two key things: 1) how much I chuck away and 2) how long the school vacations are which stop me writing altogether.  My problem now is not that I arrive at court with sick on my collar but that I’m abandoning a half-done scene to bicycle to school or I’m putting aside a book just as I reach its crisis because it’s holiday time again.  

This is the rub. You break your link to the work and then can’t find it again. You go back, you spot weaknesses but lack the momentum to make the right change and so your confidence ebbs. You lose your will and your focus. But not always.  Sometimes my children's words, stories and characters feed the imagination. After all, what a waste it would be to confound ourselves with love and chaos and not to make it our own.  

Clare Jacob, criminal lawyer turned writer, reveals the pleasures and disasters of law and family in her novel  Ophelia in Pieces.

[How do YOU do it? Be in touch, I'd love to hear your story of balancing family, work, and life.]