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Archive for the ‘Living with Allergies’ Category

Going into this week, it was not without a little trepidation, but I wasn’t fully aware of my own feelings.  I just knew there was an uneasiness hovering, lurking, in the back of my mind.  When I finally put my finger on it, I realised that I wasn’t wrong to be a little uneasy.

Blogging has not come easily to me lately.  I’ve chalked it up to everything that’s been going on, but I know that’s just an excuse.  After all, we’ve been through a lot of fraught and stressful times in the past few years, and I’ve been able to blog right through them — no sooner would I sit down at the computer than the words would spill forth, so fast that I could hardly type them all out.  But, just lately, the words have… stopped.  Just stopped.  I sit down at the computer and nothing comes.  My mind goes blank, even as only moments before I had been writing blog post after blog post in my mind.  When I come to type those thoughts out, I find they are no longer there –just gone — and trying to force the words out is as futile as trying to push a pile of sand up a hill.  And that has caused me to panic a little inside, because I don’t want to stop writing.  I don’t want there to be nothing there.

I have never been overly keen on those blog posts that recap and look back at other blog posts from the past.  I know they’re useful and relevant sometimes, but they remind me too much of when you turn on your favourite television show and find all the characters are sitting on the couch, drinking coffee and laughing, and saying, “Do you remember when…?” while the screen fades out to various clips from old episodes.  Arghhhh… I’ve seen all this before, and I switch over to something more interesting.

But, wading through the deep sand of this dry spell, I’ve considered doing one of those “looking back” blog posts, to sail through this drought on the coat-tails of what I’ve written before.  I know I’m not writing anything of worth these days, but look!… look!…  I’ve written good things in the past! So I sat down for a moment and looked back at my past posts, from this time a year ago, two years ago.  Of all the weeks in the year, and with that strange feeling of foreboding looming in the back of my mind, I choose this week to look back.

It was a year ago almost to the day that we rushed E2 to the Emergency Room for the first time, as her breathing grew slower and slower and more laboured and we finally realised that this was serious.  It was the night that they gave her breathing treatment after breathing treatment that had little effect, and the doctor finally explained to me — exhausted and hardly believing what I was hearing — that if she didn’t respond to this last treatment, they would have to cut a hole between her ribs and insert a tube into her lungs, because her muscles were going becoming fatigued and she was not going to be able to keep breathing on her own.  It was the first sighting of her (now diagnosed) asthma.  It was the night I realised that my daughter had nearly slipped away…  that had we been living only a couple of generations ago, she probably would have slipped away quietly as we slept.  And that was the night I realised that her own mother hadn’t spotted the seriousness of the situation and that, if I’d been left to make the call on my own, she might well have died.

It was two years ago exactly that I finally couldn’t take another moment of this mysterious, excruciating pain in my breasts and, with all the doctors’ offices closed on a Sunday, spent seven hours waiting to be seen in the Emergency Room, where the doctor examined me and thought she found an “irregular lump” and — eight days into our new life in the United States — I contemplated all the dark and frightening scenarios that come rushing in after those words.  It was the day that we tumbled head-first into the ridiculously complicated pit of confusion that is the American healthcare system, with only a high-deductible temporary policy to break that fall, and learned first-hand that it is not only the uninsured who face misery when disaster strikes, but America’s under-insured as well.  It was the start of the difficult journey to eliminate soy from my diet that led me to realise not only what a detrimental effect this seemingly innocuous food can have, but also to nearly turn my life upside-down in order to avoid the all-pervasive soy in the typical American diet.

So, two years and two trips to ER.  Two years and two stressful days that I’ll be glad never to repeat again.  And then I cast my mind back one more year, to three years ago…  You can’t read about that day — I wasn’t blogging back then — but we spent that one in hospital too.  We made another rushed and stress-filled journey along icy roads in the dark of night.  And there were hours of pain and an awful lot of blood, and that strange sensation of time slowing down and everything coming into sharper, excruciating focus.  And it went on for hours and then… it stopped.

And I looked down and asked the midwife in surprise, “Is it a girl?!?”, because I’d been sure we were having a boy.  And the midwife nodded, and my baby took in a great lungful of air and let it out with a loud cry, and we all smiled with relief.  And then without any delay — without even cleaning her off or even cutting the cord — the midwife lifted her onto my belly, so the baby and I were skin-to-skin, and she latched on and began to feed hungrily, drawing comfort from the warmth of my milk and the warmth of my skin, and slowly letting go of all the fear and stress that the last few hours had been — for her as much as for us.

E2 is three this week — and she is beautiful… wonderful… everything I could have hoped her to be as I gazed down on her in my arms that night she was born.  Over the next few days, we will sing “Happy Birthday” to her and open gifts and celebrate these amazing three years and the miracle she is to us.  And I will thank God that she is with us — because there are so many ways that she might not have been.  And I am aware of them every day.

And if we don’t end up in hospital this year (touch wood), that will be fine too.  Because things come in threes, and we’ve done our three, thank you very much.  This year then, perhaps just a nice quiet birthday, eh?  And maybe another slice of that (surprisingly good) egg-free, dairy-free, nut-free, soy-free birthday cake.

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When we first moved into this house, we debated about ripping the carpets up and finishing the hardwood floors.  I knew they were diamonds in the rough.  I wanted to do it — really, really wanted to do it — but everyone else was against it.  M thought we didn’t have the money to spend (and, to be fair, he was right).  My dad couldn’t understand why I didn’t want to “just move into the house and enjoy it, as he would.  And my mum was adamant that hardwood floors are so much harder to keep clean than carpet (but the truth is she just doesn’t much like hardwood).

In the end, I listened to none of them, and I have never regretted it for a minute.  Not only because they are gorgeous, gorgeous, gorgeous.  And not only because I realised with hindsight that, with her allergies and asthma, E2 probably would have suffered a lot more with carpet in her room than she is with that nice clean hardwood.  And not only because there were quite notable decreases in M’s migraine and sinus problems first when we moved to the States and changed to forced air heat, and then yet again when we moved to this house with its hardwood throughout.

No… no… not just for all those reasons.  No, I was so glad that I had decided to go ahead and rip out the carpets, to listen to my gut and get the hardwood finished all though the house…  I was so glad today, as I followed a little trail from one room of the house to another…  A little trail of neat little brown plops of poo — one every few feet — which led me through three rooms and finally ended at a pair sagging, straining training pants, filled way beyond their capacity, employed far beyond their remit, by a little girl who had completely forgotten that she wasn’t wearing a nappy and is now supposed to use the toilet instead.

I lifted her in one swift motion and deposited her — clothes, socks, training pants, and all — straight into the bathtub, and ran downstairs to quickly collect the plops before someone else unknowingly squished them underfoot.  And, as I gathered them up easily with a damp cloth and some disinfectant — to the panicked howls of  “But Mummy I am still wearing my clothes!!!” — I thought back to my mum’s argument…

When she said carpet was easier to keep clean, she was never imagining this.

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Just lately, several people have written to me or left comments on the blog, wondering where I am, whether I’m ok.  The happy-spin answer is that I’ve been taking some time off, basking in the glow of the love of my family.  The truth is, it’s felt a lot more like hanging on by the skin of my teeth, and so I’ve found myself  cutting out anything that’s not about what needs to be done now.  With the emphasis firmly on needs and now.

Things began ramping up round about the time we ended up in the Emergency Room three times in five weeks.  That’s going to be a rough time by any standard but, more than that, it was the fear and unsettling of it that exhausted me.   Would it always be like this?  Is this a spate of bad luck, or is this the beginning?  And I wanted to go to bed and curl up for a while.

But there was no going to bed, and no curling up.  There was work, work, and extra work to be done: holding and loving and comforting and night-feeds and breath-watching and breathing treatments and lots of cleaning up.   All mess and the putting away and tidying up seemed to multiply exponentially, and I don’t know why.  But it did and it called my name and I had to answer, because I am the only one who hears it.

And then there was the book-balancing.  For every trip to ER, there was a follow up appointment with the paediatrician (or sometimes two) and then maybe one with the allergist as well (or two),  and a prescription (or… many), and maybe even a vaccine just for good measure.  And so for every one of those, there is also a co-pay.  In a matter of weeks, we racked up hundreds — hundreds — in co-pays.  And this at the same time that M’s hours were going through (yet another) stage of fluctuating wildly.  One week he’d barely get 40 hours, the next he’s scramble to clock up 30… and then would come a week of 60-plus hours, which provided the blessed relief that almost brought us into the black but also tore the stuffing out of M in the process.  And then start over: short week, short week, work-to-death week; short week, short week, work-to-death week.  M was shattered, I was trying to ride this financial roller coaster, and the copays cut right through whatever cushion we might have had.

And the pressure on M to workandworkandwork was immense.  Every day that he came home early felt like storm clouds gathering.  Every day that he worked late was… oh so good as I looked at the clock and watched the hours mount up, but his work is back-breaking and those extra hours exhausted him, and then the girls went to bed before he got home again.  And then the on-call rota changed: instead of being on call every four weeks, it would now be every three — which sounds more benign than it is.  Because they line up the jobs for the on-call days, what this effectively means is that he works a normal week, then twelve days in a row, and then a normal week, and then twelve days in a row…  Combined with the fluctuating paycheques and the feeling that work had become everything and everything was work, the pressure on M cranked up another notch.

M has never been one to handle stress in a particularly healthy way.  He internalises everything, expresses nothing, pushes everyone else away, and allows his mind to run away with worries.  And then the worry increases his stress, and he falls into a vicious spiral, and he can’t break free.  And as I watch him go down and down and down like this, I feel that I must do something — I must do something — to lift the pressure from him.   And then I am heaping the pressure on myself:  I must get a job,  I must start a business,  I must clean the house more… or maybe better.  I must keep the children quiet, I must give him more room, I must try to talk more, I must draw him out, I must leave him alone.  et répéter: I must make some money, I must get a job…  or work from home… start a business.  And he asks me when I’m going to start a business, when I’m going to pull in some money.  And my mother asks me why I don’t just start a business, or find a job working from home…  And a quiet voice in my head tries to point out that if starting a business were easy or work-from-home jobs weren’t like hens’ teeth… but I feel the criticism so keenly that it never gets much further than that.

The truth is, I don’t know how I’d do it.  The balance between us is off-balance: he works (so hard!), and does the grocery run, he takes the trash out, and cooks about half the time; and I do everything else.  By that I mean everything else that keeps our lives running: not just all the housework and the childcare 24/7, but the taxes, the banking, the bill-paying, the letter opening, the form-filling, all the problem solving, the bureaucracy navigation, the appointment making, the car maintaining…  Every decision that impacts our lives rests squarely on my shoulders.   And the more stressed he is, the more I try to take on to lighten his load.  His pressure spills over to become my pressure too.  I want to take as much of his burden as I can, but thought of adding a job to that — or starting a business – just stops me frozen in my tracks.   And so there I stood, frozen, right next to him, frozen.

So it makes sense that, one day a few months ago, something inside him finally snapped — quite literally.  He came home from work and showed me a protrusion in his lower abdomen, an area about the size of his palm where the muscle wall had torn and his intestine was pushing through under his skin.  It’s not the first time he’d had a hernia — he’d had an umbilical hernia all his life that he’d finally had corrected about eight years ago — but that was nothing like this.  This was big and, with his kind of work, it was only going to get worse.  So a specialist was consulted (co-pay!) and a surgery date was scheduled.  And I asked… how long is the recovery?  How long? Because he gets no paid sickdays.

And here was a bright spark of good news!  The hernia was caused by work, so the surgery and recovery would be paid by Workers’ Compensation.  Oh, thank goodness for that.  And though Workers’ Comp pays reduced wages in order to encourage you back to work as soon as possible, it would be enough.  It would be enough.

Ten days before his surgery, I felt a tickle in the back of my throat.  M could not get sick — a delay would put the surgery to the other side of Christmas and mess everything up.   I got worse, he stayed away.  I felt rotten — rotten — and then E1 fell ill too, and he couldn’t take care of either of us.   So I did everything — all the childcare, all the comforting, all the while just wanting to crawl into bed — and waited for E2 to come down and the inevitable trip to ER.  It would surely end in the trip to ER…

And here was another bright spark, shining through the dark: E2 not only didn’t end up in ER, she actually never even got sick.  This child who has not been able to come within ten feet of a single germ without coming to the brink of not breathing, without scaring us all half to death…  this child kissed us, she cuddled us, she shared a drink with her sister (aughhhh!!!) and yet she never even so much as coughed.  Saints be praised!  Steroids, how wrong I was to distrust you!

And then, one last bright, shining spark.  The surgery is  done, the patient recovering and, by coincidental timing, he is enjoying what is truly  Christmas for him: days on end away from work.  Days and days and days to just rest and relax, in a way that I haven’t seen him do since we arrived in the States.  And as the days have passed, the worry has fallen away, the vicious spiral has stopped swirling around him and…  he has changed.  Today, I caught him looking at E2 in wonder — the kind of wonder that parents should have when they contemplate the miracle of their own children…  but which I haven’t seen on his face in months…  or even years?  I had forgotten what that looks like.   And yesterday, as I as dashing out to the shop, he floored me by suddenly looking up and suggesting to the girls that they make the gingerbread house that had been overlooked in the run up to Christmas.  He offered to make the gingerbread house! I left the house in shock.  Dear reader, I say this in all honesty: I had forgotten what it was to have a partner who wanted to be a part of the family.  I had spent so long watching him want to escape us — really wanting to escape us and the bother and the chaos — and suddenly here he was,  sitting the girls at the table and breaking out the icing sugar…  Volunteering to do something with them.  I left the house hardly recognising my own husband.

And as I drove to the shops, I felt like I was floating on air. Floating on air! The way I felt inside, in that space right behind my ribs — so light, so warm — I can hardly describe.  Like… like maybe we weren’t falling apart.  And suddenly I realised that, with a little more of that behind me — just a little more — I could do anything.  I could do everything!  I could keep this house running, I could make some money, I can put our world on track.  I can get us home.  I just need the love in the house, I just need the strength it gives.

I worry that when he goes back to work, the spell will be broken.  I worry that life will overcome us both again and we will slide down again.  But at least we have seen it, seen how it might be if we can make things change.  …If we can make things change, and keep ourselves up here, up here with our heads above the surface.

Here’s to a fresh start and God’s blessings in 2010.  Happy New Year, everyone.

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Three times in the last five weeks…  Three times!  And that’s a lot really — I’m exhausted.  Am I talking about sex? No.  Dates with my husband? No.  Attempts to start weight lifting again? Nope.  Trips to the Emergency Room, that’s what I’m talking about.  And those were just the (dubious) highlights — in between all that fun and excitement were days and days and days of dragging everyone from doctor appointment to doctor appointment, seeing the pharmacist so often that he now greets us like old friends, and spending hours on end stuck on the couch comforting one miserable, clingy child or the other.  Absolutely everything else has had to fall by the wayside — the house is an utter tip and we’re probably overdrawn.  I’ve been so snowed under, I never even got the chance to write about the second trip to ER…  I started, but never got finished.  For now, I’ll just tell you that it involved a really frightening amount of blood.  E2’s blood — who else?

And there we are, the source of all the commotion — always the source of all the commotion.  I really don’t want to be this way, but I am now completely glass-half-empty about my younger daughter — she’s been training me in it since the day that was born.  If there’s something she can catch, some food that can set her off, some way something can go terribly wrong, it will happen for her.  Even the allergist said, she was just destined for this, all this medical hassle…  Some kids are.

But if that’s true, then I am so glad I could be her mother.  Because that kid — the kid with all the allergies, the horribly restricted diet, the terrifying undernourishment, the (now almost confirmed) asthma, the utterly out-of-control immune system — that kid needs a really support system; that kid needs someone always watching over her; that kid needs an advocate.  And I am lucky enough to be able to be just that for my daughter.

Sometimes I really regret becoming a stay-at-home mum.  I’ve been out of the workforce for nearly five years now, and I know my career prospects are pretty much shot.  When M starts on about me bringing in some money, I think of applying to Starbucks or something… and then I get nervous that they wouldn’t have me.  And other mothers I know are starting to go back to their careers — or, indeed, have never really left — and they have kept continuity and are going back to jobs they are excited about and feel empowered by.  I look at them and can’t help but feel a pang of jealousy…  and a bit of guilt for having thrown so much a way.

But the other day, I looked at my daughter’s smiling face — she now finally truly well for the first time in nearly two months — and I realised that all this time, I’ve been free to be fully there for her.  Day after day, I’d been able to wake up (or indeed, not sleep all night) and just be able to do whatever was needed of me that day.  I never once had to make a choice between my daughter’s needs and some other obligation, never once felt that conflict that so many other parents have to deal with.   I had some very hard judgment calls to make in those two months — is she breathing well? do I risk waking her to check? do we go to hospital now or wait…? — but I never had to look down at her and choose between risking my job to stay home again or sending her to childcare while she was still sick.

If I have sacrificed all — and I believe I have — then it has been worth it, because she has needed that level of dedication…  not just to thrive, but simply to survive.  It took love to get through those first fourteen months — nothing less than real love would have sustained someone through the days of nonstop screaming and the endless nights of no sleep until dawn.  If she’d been in daycare, I honestly believe there would have come a point where the hired help would have lost patience, or lost faith, and just put her in a corner to cry through her pain alone.  Because I nearly did.  I did leave her to cry, for a while, now and again, and I love her.  If I couldn’t handle it, how could anyone else have?

So, when I hear about my contemporaries going back to work, or talk to my friends who have flourishing careers, I can’t help the jealousy that immediately flares up, or stop the self-doubt that creeps along afterward.  And when M asks about the money, I can’t help but feel guilty that we are always so skint.  But, when I look at my daughter, I realise that being a stay-at-home mother — for all that sometimes feels so wrong about it — is absolutely right for us, for her.  And I know how very privileged I am that I’ve been able to do it, and I am deeply, deeply grateful.

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In the end, we did go to the emergency room, and a very good thing too.  As I said in the postscript to my last blog post, E2 got me back up again around 3.15am (though I say she “got me up”, I had yet to actually sleep) and, this time, she was having to work very, very hard to breathe.  She was asking for milk, but what she really needed was an immediate breathing treatment, and I carried her straight downstairs to set it up.

The medicine is a strong stimulant — this is what forces the airways open again — and the result is almost always a burst of activity, as if she’s suddenly ingested four cups of strong coffee.  It’s hard to judge her breathing at this point — I have to wait until she’s calmed down a bit to get a true idea of whether the treatment has worked.  She ran around until around 4am, and then slowed and I could begin to see…  and I just wasn’t happy with what I saw.

She was still working to breathe — less than before, for sure, but still visibly working.  And that meant it was probably time to go to the emergency room.  But… I wasn’t sure.   It was 4am, I hadn’t had much sleep for nights on end and no sleep that night at all, I was exhausted…  it was chucking down rain and cold, and dark, and hospital has recently moved to a new location which I don’t know that well…  I thought of my other daughter, fast asleep in her bed upstairs…  I wasn’t sure what to do.   She was working for the breath but…  was it that bad?  Or was it just the usual struggle from having a cold? I couldn’t decide.

I woke M from his deep sleep and made him watch her breathe.  He  wasn’t sure either.  She was so happy and lively in herself, smiling at her daddy, but still… there was that rasping, the belly working with each breath, a slight collapse at the base of the neck…    “Mmmm… ” he weighed it up, “I think she’s ok.  Let’s just wait a bit and see.”

I agreed, relieved to share the burden of the decision.  “But I don’t want to put her in her room.  I want her to sleep here with us.”  It was a sign of his true uneasiness that he agreed immediately — he has always been adamantly against the girls sleeping in our bed.

She didn’t sleep.  She tossed and turned, and sang, and played with her daddy’s ears and his nose, and smacked me gently on the face.  So exhausted was I that I managed to slip into blessed unconsciousness even still, and so grabbed my only sleep of the night — about 30 minutes.  But when I came to again, there was no question — she was not getting better.  I rang the doctor’s office — it was now about 5am.  The nurse on call listened to my description and then said, “You know what I’m going to say, don’t you?”  I did.  “I’ll ring ahead to let them know you’ll be coming…”

Poor E1 sat up with a start start when I rudely flicked on the light, and she blurted out in confusion, “What’s… what’s going on?!?” I told her we were going to hospital and I needed her to get up, use the toilet, and get dressed.  My recognised my tone and followed the orders without complaint.  But when her knickers wouldn’t cooperate, the sleeiness got the better of her and she faltered.  “Mummy, I think I might cry…”  Big eyes, wobbling lip.  I fixed the knickers, gave her a squeeze and a big kiss, and she composed herself again and carried on — so exactly the big girl I needed her to be at that moment.

I rang my mother and asked her to meet us at the hospital, then grabbed a change of clothes and whatever food I could find — breakfast would be corn muffins and leftover pasta with garlic-tomato sauce — and bundled everything and everyone in the car.

I took a wrong turn in the dark and got lost in the city, then found my way again, then took another wrong turn and got lost again.  “Sweetheart, are you ok?” I called out every few seconds, and she’d squeak a small sound in reply.  I barked at E1, “Watch her! Watch her breathe!  Is she breathing?”  This time, the nurse had not suggested an ambulance.  And we’d made the trip every time before in the car so I just hadn’t thought…  Oh, why hadn’t I called an ambulance?!?  I turned left… found it was a road I recognised, worked out the way to the hospital, and gunned it.

She didn’t respond to the first treatment, even after a full hour.  The wheezing continued, the effort with every breath still painfully apparent.  And, more worryingly, even the stimulant no longer perked her up much — she laid on the hospital bed, listless in a little blue gown covered in dinosaurs.  They tried another treatment, with a different medicine and, thankfully, that one.  She began to breathe more easily and her eyes brightened.  We stayed another hour for observation, and then we were released, and left feeling disorientated, surprised to find that it was lunchtime.

The doctor had asked me — no, ordered — to take her for a follow-up the next morning.  He was adamant that he did not want it delayed until after the weekend.  But when we arrived, the pediatrician was running behind, and we sat in the waiting room for over an hour, surrounded by all the other children who also so sick that they couldn’t wait for Monday.  One mother, her arm around a bleary-eyed, coughing girl, told the woman next to her that 300 children had been out that week from her daughter’s school with suspected or confirmed swine flu.  I made E2 put her book down, and slipped into the bathroom to wash her hands.

The doctor’s eyes went immediately to E2’s chest and belly, from the moment she walked in the room.  “She’s working for it now, isn’t she?” she observed before we’d even begun.  “She needs a treatment now.  We could do it here… but, no, that will cost you.  How far are you from home?”  Ten minutes, I told her, and we agreed we could do the treatment the minute we got home.

I like this doctor very much — she is gentle and respectful with my daughters, shows them all the instruments before she uses them, and sings a quiet and soothing  song as she examines them.  More importantly, she genuinely understands that I am generally hesitant to resort to medication, because she is of the same persuasion herself.  So when she suggested at our previous appointment (that is, after the last breathing-trouble run to ER) that perhaps we should consider giving E2 a nebulised steroid treatment — daily steroid, for the next six months — my initial gut instinct to reject the idea was tempered by the knowledge that she wouldn’t be suggesting it if the situation weren’t really that serious.  And yet…  and yet, I couldn’t hide my revulsion.  “Think about it for awhile,” she had said, writing the prescription.  “Pick up the medicine from the pharmacy…  Maybe discuss it with the allergist too.  But the way she goes down so fast…  I think we might need to do something to help her get on top of this, for the future.”   And now the doctor brought the subject up again, suggesting in her gentle manner thatperhaps we should be using that daily steroid treatment — and this time I had to agree with her.  It all gets so critical so quickly with E2…  It’s dangerous to carry on like this.

I asked about swine flu: could the girls be vaccinated, given their egg allergies?  No, but M and I can.  In fact — she pointed her pen at me, concern on her face — we probably should be as soon as possible.  With E2’s history…  She didn’t finish her thought, but I understood.  I have no doubt that if this child contracts swine flu, it will not be the “mild case” that we’re told most people get.  I will be that mother praying fervently, with her forehead resting on the edge of a hospital bed, next to the child fighting for her life.  I need to register the two of us with a doctor — or perhaps ring the allergist — and hope my explanation of the situation is enough to persuade him or her to bend the rules and give the two of us the H1N1 vaccine.

But for now, sat here at the computer and up far too late again, I am just counting my blessings — grateful that we made it to the hospital in time, and that my daughter responded to the treatments at last, and that tonight she is sleeping peacefully upstairs… her little chest rising and falling gently in the dark.   The last few days have been exhausting, draining.   Tackling the next hurdle can wait until tomorrow.

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Another night of watching her breathe, of watching her chest rise and fall and having to make that judgment call.  What has caused E1’s nose to run and M’s throat to feel a bit scratchy has attacked E2 ferociously.  She is wheezing and rasping… and I know those sounds so well.

She spent the day trying to be her lively self.  But she kept crashing and coming over to me, heavy-limbed and whinging, and we’d feed or just sit and cuddle, until she’d regained herself again and would scramble down to join her sister.  But it wouldn’t be long before she’d be back again, asking for milk, or to be held, or just crying because she felt miserable.

The holding and the feeding I didn’t mind — not even the crying, really — but the breathing was worrying me.  When it turned raspy and I saw the first hint of that collapsing at the base of her neck, I pulled out the nebuliser and gave her a breathing treatment — remembering the doctor’s words that I was not to follow my instinct and hold off, but use it as soon and as long as she was wheezing.  Her breath quietened for a while.  And then began to grow noisy again as she played.  I watched nervously…  looked a the clock…  thought about the drive to ER…

Dinner was coaxed into her, and then another breathing treatment, her face hidden behind the mist rising from the mask.  I should have put her to bed — she was so ready, exhausted at the end of her long day — but I held her in my arms and kept her up for another hour, just to watch that her breathing was stable.

M came and sat with us.  She seemed fine, but the rattle was on the edge of each breath.  M looked at me, his mouth pressed tight with concern.  Silent, but our fears the same.  I checked the clock again.

I carried her upstairs and fed her again, and laid in the dark listening to her breathe, feeling healing milk flow out of me.  Her nose was blocked and so she kept having to stop and come off to take air in through her mouth — a frustrating way to nurse.  Eventually, I realised she’d fallen fast asleep, peaceful and safe in her mother’s arms, her mouth open and her breath warm on my skin.  I stayed where I was for a little while, holding her, watching her.  Still and resting at last, her chest rose and fell easier now, the wheezing barely noticeable.  I stood up carefully and carried her to her bed, my apprehension calmed just enough.  She hardly noticed when I laid her on her mattress and gently, gently pulled my arms away.

A few days ago, I was writing a letter a friend in the UK — a real letter, with a pen and paper, as my friend doesn’t really do the the internet that much.  This friend is so dear to me and, yet, it’s so rare that I get the chance to sit and write that I hadn’t done it in nearly a year.  So much to tell…  I was trying to summerise E2’s condition, to explain everything without drowning her details…  the allergies diagnosed, and then more of them, choice between child and cat, the tininess of her, the breathing troubles, the trips to ER, the way she succumbs to every little thing…  Compared to so many dread diseases that she could have, what we face with her is nothing really.  And yet, it’s constant, never-ending…  It touches everything.  It’s changed our lives.

I searched for a word, a way to describe her, to describe her condition…  A nightmare?  No, that wasn’t not right — cancer is a nightmare, not this.  A misery? No!  She’s such a joy!  Even with all there is to contend with, misery wasn’t right either

And then I got it.  I knew how to express it — all the frustration, all the worry and the fear, the tests, the disappointments, the way she ends up so close to the edge with every little thing…  She is an exasperation.  My daughter is a medical exasperation.

But tonight, she is upstairs in the dark, breathing peacefully.  And that is everything.

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Post-script: I stayed up a bit too late writing this, and then realised I had to stay up a bit later to finish loading the dishwasher and get it running.  So it was very late by the time I finally laid down in bed…  A few minutes later, E2 was crying for me, alarmingly weakly.   As I lifted her out of her bed, I could see how she was struggling, the base of her neck collapsing in that grotesque way.  I’ve just given her another treatment and she is breathing freely again (though coughing a lot and hoarse) and running around the room like a lunatic, completely hyped up from the stimulant in the drug.  It will be awhile yet before I can see if this will hold, and feed her down again.  It is 4am and I have had no sleep.  ER may still be on the cards.

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I was contacted recently by a television producer from LA who was looking for people to take part in a documentary she is making about extended breastfeeding.  I was excited, flattered, and… a little wary.  Depending how it’s handled, the women on the programme could end up looking like amazing mothers or absolute freaks.  I answered the producer’s questions and then added a couple of my own… But really, I knew I wouldn’t get picked.

Television producers are out to make eye-catching television shows — no doubt this producer was looking for extended-breastfeeders who were militant, activist, perhaps shaking an angry fist.  They’re not looking for women like me — I’m still breastfeeding E2 as she nears her third birthday partly because of a medical need (to supplement her severely restricted diet) but mostly… well… just because we’ve never stopped.  It’s really nothing more exciting than that.  I still changing her nappies every day, which I’ve been doing since the day she was born.  I still dress her and bathe her and lift her in and out of her cot (crib), as I’ve done since the day she was born.  And, two or three times a day, we breastfeed, just as we’ve done since she was born.  It doesn’t feel weird and it doesn’t feel radical…  it feels perfectly normal.  It’s just what we do, same as we’ve always done.  And that’s probably pretty boring television.

But if that television producer focuses on only the freaky of extended breastfeeding, she’s going to miss out something much, much better.  It’s quiet and subtle — so soft I hardly noticed it at all — but it is really worth noticing.  The best thing about extended breastfeeding — the real surprise of it — is that it is wonderful, and wonderful because it is the kind of bonding time that mothers of newborns always hope for, but never quite get.  When my daughters were newborns, breastfeeding them was (cue script) amazing, of course, but it had a certain… a certain one-sidedness to it.  Sometimes it felt that the love — much like the milk — was flowing only one way.  I fed and I loved, I cuddled and I stroked, and my baby noticed nothing more than the breast.  There were days when I felt like a milk-machine: the baby demanded, I produced, the baby demanded, I produced, endlessly, endlessly  …and I wanted something more.  I wanted something more from my baby.

It came — eventually — in dribs and drabs: a little eye-contact, and then deep, meaningful gazes — a connection at last!  And then, one day, smiles, and then giggles during feedings, and cuddles that went both ways.  That feeling of being nothing more than a walking milky-bar began to slowly fade.  And it’s just at this point — just as it’s all about to get so much better — that so many mothers are told it’s time they weaned their babies.

Feeding a toddler is completely different from feeding a baby.  For a start, all that panicked frenzy for milk is gone and, in its place, we’re in a nice, easy routine that we both understand.  We feed at home, at the same times every day, and it’s rare for E2 to ask for her milk otherwise (indeed, on those rare occasions when she does, it’s a sure sign that she’s coming down with something).  And she’s really good at feeding now — where she used to take an hour to get the milk she needed, she can now do the same job in 15 minutes.  Breastfeeding a toddler is just so much easier than feeding a baby — like night and day.

But the real change is something far more significant than those purely practical considerations.  The real change is quiet joy.  A toddler, by her nature, rarely stops moving — if her mother gets a kiss, it’s fleeting; a hug is a violent bodyblow before the whirling dervish whirls off again.  Life with a toddler is constant movement, never-ending noise — it is exhausting.  Quiet does not exist… except when we’re breastfeeding.  It’s only then that all the chaos and the wild energy stops, when my daughter crawls up into my arms, and snuggles against me, rests her head on my arm, and we spend that little time just being together.

I sing to her while she feeds.  She smiles — skilled enough now to smile without dribbling.  We hold hands, walk our fingertips together, and trace shapes on each others’ palms.  I momentarily forget the lyrics and she pulls off, corrects me sternly, and then latches back on.  Sometimes she stops feeding and sings to me — a whole song from beginning to end — before returning to her milk.  I ask her questions while she feeds, and she tries to answer them, still feeding and mouth full and sounding ridiculously indecipherable.  It makes me smile…  The whole thing makes me smile.  Breastfeeding has become a time we truly share, a few short windows of quiet and togetherness that punctuate our chaotic days.  She loves to be held,  I love to feel her body-weight on mine, to stroke the soft fullness of her cheeks, to smell her hair.  When she falls asleep, I look at her face — so relaxed, eyes closed, rosebud mouth open, her breath slow and rhythmic, her smell so sweet…  and for a moment, she is a newborn again.

This is nothing freaky.  It’s a mother and a daughter doing what they’ve always done, and finding that’s it changed and become better as time has gone on.  You could never capture that change on film — and, even if you did, it probably wouldn’t interesting television, and so that producer won’t be emailing me back.  But I wish she could capture it, I wish people could understand what it is.

Because the extended breastfeeding story that I’ve got… it’s nothing short of beautiful.

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