A-ha Moment #47

Who knew that symptoms of an anaphylaxis response can include uterine (and bladder) cramping?

Not me. Until yesterday.

I’m still suffering through subcutaneous allergen immunotherapy (4 of my 6 worst allergens, the 5th and 6th aren’t effectively treatable by subcutaneous immunotherapy or there are no serums available to do the job plus the more you dilute the components by adding in additional serums, the less effective the therapy is likely to be). I’m still getting weekly injections and my local Immunotherapist has slowed the progression with each of the 3 vials that form my treatment protocol to get to a “maintenance” dose.

I’m nowhere near maintenance dosing yet. Progress has been very slow, with deliberation, to avoid anaphylaxis as I’ve had what my Immunologist describes as the most severe local reactions she’s ever seen in a patient (and she worked in a hospital treatment program for very severe allergy treatment/control for years overseas – so I guess I’m extra special in that respect – boo!).

Yesterday I was fine immediately after the shot. I have to wait in the office 30-60 minutes (we’ve been back down to 30 lately though I am wondering if Doc will change that after this week?). Throughout the wait I have to ice the injection site. I also have to drug before and an hour and a half after the injection to reduce the severity of my reaction. I did both.

Within an hour after leaving Doc’s office, I had these crazy uterine cramps – bad cramps! – and was thinking I might be getting the monthly visit early. Nope. My nose began to run. My throat started swelling and I began coughing. And coughing. And coughing. It was harder to breathe and I wasn’t doing anything strenuous. I took my asthma control medication and the second drug to reduce reaction. And I wondered whether I should take myself to the hospital or call my Immunologist.

I did neither, but I did take medication and call the LP and tell him what was happening. He agreed to meet me, we had some lunch (sometimes food can calm my reactions, especially warm food). I had a small bowl of vegan soup. The throat swelling and coughing began to subside. I started sneezing and the runny nose continued and my arm had swollen up like a football, but no more “systemic” (anaphylaxis) symptoms. I packed in the worry and went back to work.

I can’t say my focus was sharp for the rest of the day, but I hung in there. Last night I couldn’t sleep and did some reading about symptoms of anaphylaxis in case there were others than the ones I’ve had before (throat swelling, difficulty swallowing, trouble breathing, chest tightness).

That’s when I discovered that those crazy cramps could have been part of my body’s response to being routinely poisoned weekly in the hope of calming my overactive immune system.  Who would have thought?

I will mention all of this to my Immunologist next week of course (even though I fear it means she’ll keep me the 60 minutes again from now on), and see what she says, but in the meantime I wanted to share here in case anyone else is prone to allergic reactions and has cramps along with other symptoms – it can be an early warning sign of an anaphylaxis reaction and a cue to get medical help if you don’t carry an epipen (I do) or work very near a hospital like me. (Also apparently I like to play fast and loose with my health – gah.)

PSA over.

Now back to our very irregularly [un]scheduled programming.

I miss ya’ll. Been busy with kidlets, work and getting back to some self care (I’m running and I did almost no work while on vacation recently – unheard of!). Ta da!

 

 

 

 

Parenting is hard

Trite. I know.

But it’s true. And isn’t truth the bedrock of all things trite?

I have never been more humbled by my failings, my oversights, my impatience, my every imperfection than I am as a parent.

Being a litigation lawyer with very demanding and difficult clients, weasel-like opposing lawyers and fallible adjudicators is easier than being a mom.

Hands down. Any day of the week.

And therein lies the beauty and the rub of this exquisitely challenging and amazing role.

That is all.

Sick

I have not been so fraught with symptoms of immune activation and distress since about April 2013 – after our third straight miscarriage in about 5 months and before the final three). 

At that time I could barely eat anything without my throat swelling, my IgE levels were ridiculous and I looked like a racoon from a severe case of allergic conjunctivitis and excema all around my eyes in reaction to I still don’t know what (other than the pregnancies – that was then and remained the common denominator for my immune system going haywire). 

I’ve been doing immunotherapy to desensitize my immune system to three of my worst everyday allergens and one seasonal one for the last 6 weeks. 

I am constantly getting sick, feel more exhausted than I thought possible and the depression is sneaking back in. I’m super stressed because there is so much to do at work and home and I’m operating at far less than full capacity thanks to the allergy therapy. My sense of failure is omnipresent. 

I know in the end this is supposed to make my life better. But right now it just sucks. 

So much yet to do

I attended a mental health event last night. I’d bought the LP a ticket too. The keynote speaker told the stories of her childhood and adult life immersed in mental health conditions, mental illness, addictions. Yet she worked so hard and, ultimately, achieved unimaginable success. Still, the mental health issues are a part of her life and inform the healing path she walks.

The LP and I stared at each other afterward.

“What did you think?” I asked.

“It was good.”

“Yes” was all I could manage. Then, “she is so intense.”

“But it hit pretty close to home.”

Wham.

Just like that, he nailed it.

And for over an hour now, since first waking up this morning, all I am capable of doing is weeping. My heart is aching. My head is swimming. I feel broken, sad, invisible. Even now.

Then it hit me.

I have so much grieving yet to do.

So much healing.

So much.

Bad Dreams

Both the LP and I grew up having bad nightmares (the LP night terrors). He still lets out blood curdling screams while still dead asleep and embroiled in nightmare sometimes. My affliction worsened – severely – after Baby A’s birth and I was later advised they were symptomatic of PPA (postpartum anxiety, related to and sometimes experienced together with post partum depression (PPD) but sometimes experienced independent of PPD). 

While Baby A was still very young I was offered medication not recommended while breastfeeding. I declined. Breastfeeding Baby A has never been easy so I opted to ride out the daytime anxiety, for which I had some tools in my arsenal, and suffering through the nighttime anxiety, for which I’ve never found tools apart from the training I got after a brain injury that triggered a flood of childhood sexual abuse memories and corresponding nightmares. 

Most of the PPA nightmares involved drowning – of my dog and my children mostly though occasionally of other people’s children. They knocked me flat. Every time. I never went back up bed or sleep on the nights when they struck. 

The MT seems afflicted with the nightmare gene too. He says almost every night before bed “I hope I don’t have a bad dream”. “Me too” I always respond. I hope not too. And then I make the same wish for myself and the LP. 

Wishes are just that. Obviously. Sometimes they come true (like dreams). Sometimes they don’t. 

Early this morning I awoke from a bad dream that was muddled and disjointed. I only recall that it ended with Baby A being struck (and dismembered? I made myself wake up and cannot take my mind back there) by a vehicle while I ran out (in slow motion – why can we only move in slow motion when something awful is afoot?). The fear and gore took my breath away. And got me out of bed. Immediately. 

If I had to live with these sort of nightmares again often (as occurred for a while after Baby A’s birth) I would readily drug myself into a stupor. I would wantto eliminate any opportunity to recall such horrors. 

I sometimes wonder how parents of violently or tragically killed children survive. I have often wondered (still do) how my own mother survived after her first born son died – in somewhat suspicious and utterly tragic circumstances. I know she struggled mightily. For ever. His death shaped my childhood. And has resurfaced from time to time my entire life. 

On that note, is it moot to describe such circumstances as utterly tragic? When is the death of a child not utterly tragic? In the case of my mom’s son the tragedy – for me – is amplified by the fact what happened could readily have been avoided but for the foolish or perhaps malicious acts of another. And that the other was himself a child. From tragic circumstances. 

I digress. 

I don’t know why I’m writing this post except to exorcise the demon of this morning’s awful dream. I hope I don’t have (any more) bad dreams. 

Do you ever have nightmares about your children being harmed? How do you reground yourself after them?

Mindful Immunotherapy?

After years of waiting and a ridiculous sequence of pharmacy and serum lab screw ups that started in September 2016, I began immunotherapy yesterday. In consultation with my local immunologist I opted to begin a process likely to span approximately five years by addressing my four worst allergies first. 

The dose is very dilute in the first series of injections – 1:100. I have talked to many other patients who didn’t notice a reaction at all during their first vial (which typically requires weekly injections for several months to a year).  I was expecting something similar. 

Round one was – to my surprise and disappointment – remarkably uncomfortable. I immediately began to itch fiercely at the injection site. The itching spread and it took all I had not to scratch. By the evening (8 hours later) I had a very large welt in the shape of a large parallelogram as wide as my palm,angry and red, curling around my left arm. 

Worse, I started coughing before long. Thankfully, my immunologist is very cautious and gave me both a second antihistamine (the second generation, water soluble variety so I would not be drowsy or foggy headed) and the steroid inhaler she has me on to take in the clinic. The coughing subsided and I had no throat swelling. 

But still. Not a good start to the most innocuous of beginnings. My left arm is still unnervingly itchy more than 24 hours later. Thankfully they alternate arms each week. 

Catching up on my friend MLACS’ posts yesterday I mulled over her comment about how a damaged mind body connection can get in the way of healing. I know that to be true and started thinking about how I could engage mindfulness as I embark on this new journey to [ultimately] tame my occasionally rabid immune system. 

I’ve decided to befriend her. My immune system. I will coax and encourage her and remind her what a long way we’ve come together and how much I need her and care about her well being. I am doing this for her. She deserves a rest. We both do. The waters will be rough again before they calm and the sailing  is smoother. But together we can – we will – do this. 

So. That’s my mantra going forward with this therapy. We can do it. Me and my immune system. We’re making peace and moving to a calmer place. One syringe at a time. 

To the woman in the Ikea parking lot

You stopped me as you pulled out from your parking spot to applaud my parenting. Bewildered, I barely managed “thanks”. You told me I’m doing a great job and to keep doing what I’m doing. 

Now, reflecting on your random act of kindness, I am sufficiently moved to feel my eyes burning. 

I needed that more than you’ll ever know. 

Thank you. 

Mental unwellness

Do I need to see someone? My golden rule in a past life free of children and the dark abyss that (to me) represents the private practice of law was that if ever I asked myself that question the answer ought to be an unequivocal “yes”. 

I mourn things daily. The short list includes:

  •  Sleep. I wake up between 3:45 and 4:00 AM to get some housework and billable work done before I get kids and self ready and off to child care provider and work. I almost never get to sleep before 9:30 and almost always wake up at least 3 times, often for at least an hour. Sleep deprivation has stolen my soul. 
  • Romance. By which I mean thoughtful tenderness as much as any physical intimacy. What the [insert obscenity] is that again? The LP and I barely see each other and he is the most negative human with whom I carry on a relationship. 
  • Kindness. The MT is whiny, shouting or manipulative about 50% of his waking hours. I hate 4 going on 5.  The LP wallows and is negative. Baby A has started hitting and throwing (thankfully the biting is more limited than it was with the MT at this age). Some moments are amazing. The rest kill the amazing. I grieve this deeply and feel like I must be a huge part of what I am calling the problem. 
  • Time. Where did that [insert obscenity] go?
  • Breastfeeding. It used to feel like bonding time. Now it feels like bondage. I am bitter and hateful as much toward the LP for not helping with the night waking and the persistent will of baby A to maintain an all night nurse and nap bar. It is time to wean – in breach of my promise to myself to nurse until 2 or whenever. But the LP is too busy with work to take part in this either so it’s not happening because at some point I cave every night when I can’t imagine the next day with even less sleep. Baby A has my tenacity if nothing else.  
  • Love of the law. Yes I mourn that. I would do anything to leap out of this profession and do anything but. Private practice and firm leveraging, misogyny and lies have broken any spirit I once had for the law. I’m so over firm life. I overcame a significant disability (brain injury) to complete law school and watched my mother diagnosed with stage 4 cancer, get sick, have surgery and lengthy treatment, get sort of better, then sick again and die while I kept my promise to her to finish law school and my two articles. Then she died weeks before I was admitted to the bar. What was the point? More importantly, what *is* the point now? I cannot see it. I feel as though my law firm and practice are the biggest joy thieves in my life. But maybe I’m just making excuses. 
  • My marriage. I don’t even know what to say. I just feel broken and lost. Or that it is lost. And without a soul who cares enough or has had enough sleep or kindness or peace to bother trying to salvage it. 
  • Financial security. And the fear debt brings. I never imagined myself saying this. I’m generally mindful and try to be careful. But I’m not single. And I didn’t see infertility and recurrent pregnancy loss or the costs of cross-border “investments” in the circumstances coming. Gah.

Writing this I suspect I not only need drugs and therapy but a new job. And I’m not the only one. 

On that delightful note, happy [insert obscenity] new year. 

Flash

As the LP and I were driving to pick up the boys from their care provider yesterday we heard an ominous thud on the passenger side of my vehicle shortly after I turned a corner onto a busier two-lane residential street.

I stopped. I looked behind me. A blonde mid sized dog – looking terrified and hunched over – was standing up in the middle of a fairly busy residential street. Cars were coming in both directions. She was frozen, the proverbial deer in headlights. The cars stopped. She began moving. I pulled ahead so I could stop my car safely off the road and immediately ran back.

I had not seen her. Nor had the LP. She hit the vehicle on the side, though there is no damage to the car.

When I ran back I saw a man in a big pick up truck with a mixed breed dog in the back seat with his window open. I asked if the dog was his. She was.

I burst into tears and said I was so sorry, we had not even seen her coming. He said “I know. She got off her leash. I know.”

He asked me to wait right where I was and see if she came that way. I said yes and remained stationed there. I also looked in the yards nearby. The man returned on foot, calling out a name. I asked him how I could best help.

He told me her name is Flash and his wife had seen her go into the alley behind the street where she was hit but then lost her.

On foot, I looked up and down alleys, side streets, in yards. The LP drove around looking as the man had told me Flash would never come to a male stranger but might come to a woman. Eventually I sent the LP to go get our kids. I kept walking, calling, searching, pleading for mercy and a positive outcome for poor Flash. I prayed and I begged: God please let poor Flash be okay. Please.

I never saw Flash again. After about an hour, when the LP had returned and driven around some more and reported he could not find the couple who had been on foot looking for her, the LP convinced me they must have found her and we should go home.

I cried the entire drive home, most of last evening and over night when I could not sleep. I remain a hot mess, stuck at work with my door closed and a pool of mascara on each cheek after having called all of the emergency vet clinics and even the vet clinics near that area that were open late enough that they might have taken Flash there. The staff at the front desk in each of those clinics were very kind. None had taken in a dog like Flash last night.

I’ve revisited the scene in my mind over and over again. I have played out countless “what if” scenarios, all of them agonizingly open ended as I have no idea what happened to poor Flash.

I do not know what else to do. Nor do I have any idea how to make peace with any of this.

The LP keeps reminding me it’s not my fault, I was not driving fast, I was not acting negligently. But that is not the issue. I was in an accident in which someone’s beloved pet and family friend got hurt, maybe died. I have no idea if Flash is alive or dead. Or how I could help, if at all.

What I have is a mess of feelings and thoughts I can neither reign in nor erase. With a heavy heart I continue to pray for Flash and her family. Above all I feel lost.

 

At 4:26 AM…

The Miracle Toddler (now preschooler) leapt out of bed and dashed to the living room where the evergreen tree he selected some 3+ weeks ago is decorated (largely by him, with “assistance” from his 18-month old brother). 

The house was dark save for the white lights in that evergreen and the single string of rainbow coloured lights rimming the top of our living room window. 

Mom? he whispered. 

Yes? 

Did Santa come?

I don’t know. Did he?

He ran back to check again: I think Santa has been here Mama!

And so it began. Miraculously we got him bask to sleep.

Until 7:11…

Losing my Mother 

I lost my Mom almost 11 years ago. I have missed her throughout that time but more so since becoming a mother (the first time I got pregnant in 2010 which led to my first loss in 2011). 

I started this post two mornings ago after I awoke from a nightmare in which I watched my Mom dying. 

The dream was not a replay of how she actually died. In reality her heart gave out after her cancer returned and she refused any further surgeries or radiation. She was not eligible for chemotherapy due to the damage to her heart from the first round of cancer, surgery in which her heart stopped, and 6 weeks of daily radiation treatments. 

In the dream her heart gave out too. But for different reasons. She had suffered a devastating fall that broke her neck and paralyzed her from the neck down. She was naked and terrified. The paramedics were there first and wouldn’t let me near her. 

Finally I got in her line of sight and I didn’t do any of the things I wished I had. I didn’t do anything right. I cried. I was scared. I was too welled up in my own grief and fear to be her anchor and help her find peace before she left. 

When I woke up I was so upset. I couldn’t stop crying and didn’t even understand – don’t fully understand now – what this dream was supposed to teach me. I just sobbed and begged my Mom not to come back to me like this and asked her why, why come back to me this way? Why now?

I could not stop replaying the scene in my head. I catalogued everything I could have done better. I felt crushed by my helplessness and the sense I had let my Mom down in her moment of deepest vulnerability and need. 

There was a time when my mother was alive – before the cancer – and she had fallen after her fist hip replacement surgery (which the lead surgeon botched, resulting in my Mom being limited to only non weight bearing activity, which means no standing indepedently even for transfers to a toilet or bed). I was staying with her to take care of her but had been at work for a few hours. 

When I returned I heard whimpering and ran to look for her. I found her on the bathroom floor, crying. I had never seen her cry before. Even when her closest family members had died. She may have cried then. But not in my presence. 

She said “I don’t want to live anymore” in an almost inaudible whisper, her voice hoarse with tears and shame. I held her in my arms and rubbed her back. 

I felt myself stop breathing. My Mom needed me to see her and honour all she had lost in that moment. It hurt with all my being to hear her, see her as she felt then. But I knew what to do. And I did it.

“I know you don’t” I said. “I know.”

All I wanted then was the power to draw every ounce of shame from her and replace it with the dignity that the disastrous hip surgery had stolen from her. I wanted to make her whole again. To give back her sense of self worth and independence. 

I wanted that in my dream too. When I saw my Mom naked – wild eyed and immobilized on the ground – snd surrounded by strangers I wanted that. I longed to be her truth, her anchor, the sense of humanity and dignity she clearly feared she had lost. I wanted to help her tame that mounting fear. 

In my shock and grief I could not act upon those desires. I was unable to summon the compassion and quiet calm she needed. I could not restore her dignity, chase away her shame or bring her the peace I so longed for her to have before she left us. Before I had to say goodbye. Again. 

And my heart shattered anew. I don’t have words for how painful that dream was and still is. I even find it hard to type this for the tears burning my eyes and cheeks. I have taken many breaks to wipe them away and ride out the shuddering sobs. It feels like grieving my mother’s departure all over again. Or maybe it is her absence I am grieving now?

I have persisted with this post because I want to document the dream and my memories somehow. I need to write it out to help me make peace with myself and in the hope of someday making sense of it all. 

I wish I knew what that dream was supposed to teach me. I only remember dreams that are either meant (in my belief) to teach me something or to illustrate a deep seated fear with which I have not come to terms (e.g., my kids drowning). 

I awoke feeling and continue to feel that there is something I am to grasp about myself, my life or my parenting in all of this. I don’t yet know what that something is. 

I do not know many mothers of young children who have lost their own mothers. I can only think of one. And we don’t talk anymore. I wonder if all of us struggle after our mothers’ deaths like this. I wonder if this is simply how I process grief. 

I wonder what I am supposed to take away from all of this. Perhaps most fundamentally an awareness that I am not done grieving the loss of my mother 11 years later?

I suppose I’ve also learned that I may never be done grieving the loss of my Mom. There are other losses I likely will never stop grieving. Contrary to the platitude, time does not heal. Yet it does soften the edges of grief. Most – clearly not all – of the time. 

If you were close to and have lost your mother, do you have dreams about her? Do they ever challenge you and, if so, in what way?

Stevens Johnson Syndrome

A few months ago baby Azulito had an infection arising from an eruption cyst. I learned that such an infection is rare among properly nourished infants and toddlers. 

Then baby A had a severe reaction to the Amox.icillin (a member of the penicillin family) he had been prescribed for the infection. The ER doctor at the Children’s Hospital said penicillin allergies are “relatively common” and gave baby A steroids and the name of an over the counter second generation (non drowsy) children’s antihistamine. 

We gave baby A the antihistamine daily for the recommended 7 days. It didn’t seem to do anything after the first 48 hours when it did seem to stop the rash from spreading or looking as rash like. But it did nothing to abate or improve the fiercely red, scale-like welted tissue on our baby’s feet, legs, arms and back. At one point I told the LP it looked like Baby A had suffered a chemical burn. It took almost a month to clear up. 

During that time I happened to have a previously scheduled appointment with my immunologist. I mentioned the ER visit. She was alarmed. She asked if she could refer Baby A to a paediatric immunologist. I leapt at the invitation. 

Despite the 1-2 year wait times for paediatric immunologists where we live (one of the shortcomings of our public health care system where queue jumping is prosecuted) baby A got an appointment within two months. 

At the appointment we learned about a new immune condition. Stevens Johnson Syndrome. I had heard of it but knew little about it except that children have died from it in litigated cases in the U.S. 

The doctor thinks what Baby A experienced was an early onset of Stevens Johnson and not the “relatively common” penicillin allergy we were attending to discuss and possibly run a drug challenge to confirm some years down the road. 

Stevens Johnson is a rare, serious immune-mediated hypersensitivity  complex. It primarily affects skin and membranes. It can also cause loss of sight and other tragic complications and in severe cases death. 

Stevens Johnson often results from drug reactions but can be triggered by other substances. In medical terms it is “a toxic form of epidermal necrolysis”. The chemical burn-like appearance we saw in baby A is one of its hallmarks. 

It is not safe to run a drug challenge with anyone diagnosed with or suspected of having Stevens Johnson. In Baby A’s case, his reaction was bad but enough but not as severe as many SJ cases. But most SJ cases occur in persons who have been exposed to the triggering substance before. 

Baby A had never been exposed to a penicillin type drug, not directly and not in utero. So his reaction is considered severe and any re-exposure very dangerous. 

Ugh. 

I had believed and hoped that this child would not have my allergies or asthma or other immune problems. I did not see this coming and have been humbled and terrified by the diagnosis. 

Baby A now has to wear a medic alert (there’s a fun thing to strap around the wrist of a small toddler!). And we have to make sure he never (ever) gets any of the penicillin family of drugs or those that the human immune system sometimes mistakes for that family. 

This has been a sobering development. 

All in all I consider us incredibly lucky. Unbelievably lucky. And for that I am deeply and truly grateful. 

To the women who bought our bassinet and crib

One of you

bought the fancy crib in which 

my babies never really slept

the other

a blue and tan bassinet

with a folding stand. 

*

Our relationships were brief 

born in each instance 

of a commercial transaction. 

And yet they fostered

the sort of candour 

among strangers 

that loss survivors sometimes share. 

*

You each told me about your losses. 

I empathized 

and shared some of mine. 

There were tears 

and fear

– so much fear –

and hope. 

*

I’ve thought of you 

since then

wondering

and quietly hoping

this time is different

this time 

your baby comes home 

in your arms. 

O Love, aren’t you tired yet?

I am off work today which means I have the rare opportunity of paying the media a fraction of my attention. 

My eyes burned and tears graced their rims when I when I heard. Yet another transformative musician has died. 

Sure, this one was old. It wasn’t cancer. Or an overdose after a long battle with pain and addiction. 

But it feels like piling on in an already sucker punch filled week. And leaves me thinking:

“So many graves to fill. 

O love, aren’t you tired yet?”

Ugh

I am so weary of the American election campaign. And of fertility, literary and other non-political bloggers telling readers what to do on Election Day (as irrelevant as that may be given the large numbers of early voters). I get fear and strong feelings. Just not the rest. 

Humans exhaust me. 

Lest we forget? Pregnancy and Infant Loss Awareness

Tomorrow is Pregnancy and Infant Loss Awareness Day. 

I have long had an uneasy relationship with this event. 

On one hand I appreciate the acknowledgment and opportunity to raise awareness. Mostly so that women and families struggling with Loss may better find or be mindful that options for support and sharing exist. 

On the other hand I feel exhausted, suffocated and ashamedly silenced. I am among the lucky ones. A survivor of recurrent pregnancy loss. I have two living children for the dozen or so embryos and babies – each one a dream waiting to come true – I never got to cuddle and raise. 

I still experience sadness and loss viscerally. I still long for the daughter I lost and will never have. I grieve that loss.

Every. Single. Day. 

But. Because I have two small children -alive and well – I feel disentitled to share that grief or the longing that keeps it alive. My voice has grown thin and inaudible for the most part. 

I wanted a third (living) child. I looked into trying. I hoped the child would be a girl. But truth be told it was really about wanting one more child. 

There is no more “next time” for me. 

Another pregnancy is not an option – it’s just too dangerous. Too expensive. Too terrifying (the thought of orphaning my boys is more than I can bear). We can’t afford a surrogate. And it’s illegal to do that for money where I live anyway. 

So here I am. On the eve of Pregnancy and Infant Loss Awareness Day.  Deeply and eternally grateful for my two amazing, exasperating, unspeakably beloved boys. Yet forlorn and feeling guilty even thinking about how the other part of my dream – sparked by the loss of my daughter, the baby whose loss spurred me to start this blog three years ago – will never come true. 

Most days I accept that this is how things are and shall be. I never say “meant to be”. Oh how I loathe that demeaning, dismissive turn of phrase. 

But the longing, the ache, the sadness over the babies and dreams we have lost, those things never really go away. That quiet ache never gets easier. It is never forgotten. 

They are never forgotten. 

Baby A has our first lost child’s given name as his middle name. We still talk about our daughter by the nickname we gave her. We have a name picked out for the daughter we will never have. 

I don’t even know how to wrap my heart around this grief. It feels so vast when I gaze into it to pen this post. Most days I stuff it down and let it be washed away with phrases like “we couldn’t manage a third child” or “we couldn’t afford another kid”. 

But there it is. There is no “lest we forget” with infant and pregnancy loss. 

We never forget you, tiny beloveds. In our hearts you live on. 

Parenting Fail

Yesterday the Miracle Toddler (no longer a toddler) called his paid caregiver a bad name. It had head in it. And some sort of cuss. 

Anyone who knows me will also know who is to blame for this vernacular. 

It isn’t his father. 

Damn it. I suck. 

I hereby promise to work harder at exorcising my cussing demons. 

I would say “farewell potty mouth” were I not a realist. 

Wish me luck. 

This will not be easy. 

Some Good News!

Baby A has been given a referral to a paediatric immunologist by my very kind immunologist (I don’t think they make humans kinder than her). 

At my appointment this week I mentioned his recent episode and she was very concerned. She said that kind of reaction in a baby is rare. Usually penicillin allergies result from recurrent exposure she said. So she asked if I would mind her referring him to a colleague of hers she trusts. 

Why would I mind?

She wrote the referral right then and there and walked it up to reception for faxing. I had wanted to ask but didn’t want to overstep; ordinarily in our system that kind of referral should come from the paediatrician. But I couldn’t get baby A in to see her until mid October when I called early last week. 

In the not so good news department I need more allergy testing. So I’m off any antihistamines for a week. I can already feel the symptoms nipping at me and it’s only been 2 days without the antihistamines. Gah.

In other news, I had a disastrous week at work. There were tears. But I righted a wrong I had committed that hurt the feelings of someone I care about. There may have been some masochism and retail therapy as I worked through my shame and anger about everything. But peace is mostly restored and a new leaf turned over. 

Time to move on. 

Thank goodness for that. 

Back to the good news. 

This week’s ugliness at work was interrupted by the most thoughtful care packages for my boys sent by my sister-friend. Every night and morning there has been a request by MT to play with his gift. He also asked me to say thank you from him yesterday morning – what a lovely way to start the day!

On that note I will wish you all a kind, peaceful, emergency-free long weekend!

Gratitude

My sleep has been interrupted and lost for hours on end every night for the past 12 nights as Baby A struggled first with an infection and later with an allergic reaction to the antibiotic prescribed to treat that infection. 

My nipples throb from the abuse he’s given them in his desperate attempts to comfort himself and return to sleep. 

I’ve missed work and am hopelessly behind, meaning I have to work (hard) this weekend. 

My stomach and GI tract have been a train wreck – sleep deprivation and stress wreak havoc on them. 

I look and feel like crap. 

Baby A looks as though he just emerged from the burn unit. The hives are gone but in their wake lies a bed of leathery, angry red scales and mottled flesh threatening to blister. It is painful to look at, eerie to touch. Even though the ER Doctor warned me this could happen it feels macabre and unnerving. 

Despite all of that I lie awake this morning feeling deeply grateful. I fought long and hard to bring this boy home. I kept fighting to get him diagnosed accurately and treated appropriately this past week. 

For the opportunity to do so – for his very existence and for him not being stolen from me now – I am grateful. In ways I cannot articulate. 

Sometimes there are no words. Or none beyond “thank you”. 

Thank you for this child surviving. In June 2015. And now. 

Thank you for not giving life to my worst fears. Again. 

Thank you for the compassion, caring and kindness of my blogging friends. My non blogging friends. The family who have chosen to share our journey and care about us. The colleagues who did not pass judgment and expressed genuine concern (there are never many in my field. Sadly.)

Thank you Baby A. For all the trouble I have the fortune of encountering with you. And for all the rest. The smiles. The hugs in which you pat my back as you’ve felt and seen your daddy do. All the love. 

I am grateful. 

Penicillin Allergy

Why didn’t I think of that?

Despite my more than modest knowledge of immunological issues, my greater than average experience with allergic and histamine reactions and my awareness that childhood allergic reactions often do not follow first time exposure but rather develop after repeated exposure to the allergen… I failed to see this diagnosis coming. And I let my little guy suffer needlessly all week. 

Baby A (now Toddler A) and I just came home from the local Children’s Hospital. Thankfully the third doctor he saw this week – in the Emergency on said Children’s Hospital – immediately recognized what I had overlooked. The nurses had rushed Baby A in with lightning speed after assessing his rash/hives and recurrent medical visits of late (after 13+ months of purely banal medical history since his emergency arrival on earth), for which I am also thankful. 

By the time I decided emergency medical attention was in order this morning the rash had reached fiery, raging proportions and the poor boy had endured several rounds of inconsolable distress. One thing was clear: something was terribly wrong and getting worse.

There is a small risk he could develop trouble swallowing or breathing so I am to watch him closely. If that happens we must go back to the emergency immediately. He is on medication now so I’m hoping things will improve from this point forward instead. 

I have accepted this unfortunate series of events as a reminder. Or two. 

First, never take anything for granted. 

Second, don’t assume that a seemingly late reaction isn’t related to something outside immediate temporal proximity. (We finished the amoxi.cillin Monday night.)

On the good news front? The tooth that had gotten infected as it erupted looks good. It has not fully emerged but appears healthy and is not likely to need anything further beyond patience. 

Will I be glad when this wild ride ends. 

And it Pours

Childhood mystery virus number 367.2(a) has struck. Of course. Why wouldn’t it? 

Thanks to the infection from baby A’s incoming first molar and the antibiotics used to treat it, his immune system took a hit. And now he has lesions on his tongue, an angry rash all over his body and slightly inflamed tonsils. 

Of course. Why wouldn’t he?

I had two hearings in court to attend today. Thankfully being in a larger law firm means others can handle those appearances. 

When we saw a third Doctor this morning she said at this point it’s very hard to know which virus the little fellow has caught. Yesterday the paediatrician mused it looked like Primary Herpetic Gingivostomatitis (try saying that three times quickly). But it doesn’t look like that. And she said if he had a rash we could not rule out a coxsackie virus (hand foot and mouth specifically). Because he didn’t have the rash yesterday morning. 

Of course. Why would he?

I am no doctor but I am nevertheless fairly confident that he doesn’t have a HSV1 outbreak in his mouth. I also don’t think this is presenting like coxsackie though it’s possible we may yet see the blistering on hands and feet. So far they just have the odd spot from the angry rash covering most of his body. 

One thing has been reliable over the past 10ish days. He will wake up between 1-2 am. And keep me and sometimes the LP (because misery needs company. Right?) up for 3-4 hours. Crying. Angry. Inconsolable. 

Enough already, Universe. You’ve had your fun. Move on. Now. 

Abscessed Tooth at 14 Months?

Did someone stick the horseshoe up my behind the wrong way? 

Summer has been ridiculous. 

Busy. Exhausting. Ridiculous. 

Then last week came along. 

It began with a screaming 14 month old stealing the last few shards of sanity – and hope of sleep – on Sunday night. Repeat performances ensued until last Friday between about 1 am and 5 am. Same bad time. Same bad channel. 

Why?

Because the little critter was getting a new first molar. And it did not go as planned. Not at all. 

Apparently we make a very short list of families with infants-come-toddlers who developed an abscess while cutting new teeth. After the ER doctor diagnosed it the dentist insisted that was not possible. Until he saw it. 

Yeah. That’s us. Lucky as sin. 

The worst part was the balloon that replaced his one cheek where the evil abscess erupted. It lasted almost the entire week. Even now I am concerned the infection is not gone though the antibiotics are because the gum is still puffed up and inflamed. And the tooth hasn’t fully emerged. 

I am off to see the paediatrician momentarily. Wish us luck. 

Loss is everywhere

I sometimes find it hard to believe that I hold rank with only 2% of the world’s population of females who have had 3 or more losses. 

(I think I’m recalling that statistic accurately but numbers are my nemesis so feel free to shame me with a correction.)

Today I sold our rather expensive crib. Because having more children is in my heart and soul but not on the agenda. So it goes. 

The woman who bought it disclosed that at 25 weeks she is still really scared. She lost her last baby at 24 weeks. And two more before that. 

We bonded over recurrent loss. I haven’t stopped thinking about her and sending pleas of mercy to the universe on her behalf. I find myself biting back the occasional tears. Over an almost stranger. 

Tonight I’m getting foils. My hairdresser asked me if I only want the two boys. No. I really wanted three. We looked into it. It is not in the cards. 

She told me her mom had multiple miscarriages too and was depressed for years. Her younger sibling is more than 10 years her junior. Miracles do happen. But they come at a price. A long bout with post partum depression rocked her mother’s world after that rainbow baby was born and she couldn’t really enjoy him for quite a while. My heart aches.  

Then she tells me about her mom’s younger cousin who had twins 6-ish months ago. And died during delivery. Dad has no family and is at a complete loss (no pun intended). Tears filled my eyes. 

We are not such a rare breed. Every time I meet or hear about one of my loss or infertility cohorts my chest and stomach hurt a little. Sometimes a lot. 

Sometimes I want to cry just listening. And knowing. The grief. The longing. The senselessness. The sleepless “what could I have done differently?” and “why me?” nights. 

I so wish none of us were members of this club. 

Thoughts on Redundancy 

I have often wondered in the past 12 months whether to officially park this blog or disable it as its purpose – bringing my spirit baby home – was achieved (thanks be to God, the Universe, my Obstetrician, my Reproductive Immunologist and my tenacity). 

And it’s tough not feeling guilty for throwing my success in the faces of my sisters who soldier on – I remember the anguish posts by those who had living children evoked in me before the MT and by those who had more than one while we endured failure after failure on the road to bringing home our spirit baby. 

But enough about me. This post is about the blog and what purpose I envision it serving going forward. The thought that maybe it could help others has fuelled my ambivalence and the hesitance to disable or abandon it with deliberation (as opposed to the inadvertent neglect born of a busy job and busier couple of boys that’s resulted from Life in the past 12 months and especially since I returned to work last December). 

You see, every so often I get an email from a stranger who has stumbled across my humble blog. I’m always surprised by this as I’ve never marketed or cross-posted on twit.ter or insta.gram to increase traffic or otherwise. Candidly I have always considered this space primarily self serving and at best entertaining. Now that I have little to no time in which to write and post here the space began to feel redundant. What was I adding tithe blogosphere that warranted keeping this site alive?

For better or worse I haven’t found time of lard to give that question prolonged thought. Admittedly it has always been my hope that if someone came here needing help or information or a friend in recurrent loss, she or he would feel welcome to contact me. Each time I am contacted I respond genuinely and as generously as life permits. 

Late last week someone from the company that maintains Dr. Braverman’s website contacted me. He said some things that surprised me and made me reflect anew on what this blog has to offer and how I could be part of expanding options for others struggling with recurrent pregnancy loss or unexplained infertility that may have immunological causes. 

In the end I accepted his invitation to post a link to Dr. Braverman’s website not to increase my doctor’s wealth. He needs no help in that department (a fact of which I’m regularly reminded as I continue to pay down the debt a year past our spirit baby’s first birthday). Rather, I wanted to make it easier for women and couples needing help – like I did – to find me and to find him and other available options. 

In short I wanted to make this space feel less redundant. Notwithstanding my neglect of it these days. To do that I’ve made a long overdue update to my profile page (see here) that now includes a direct link to Dr. B’s website. 

Meanwhile I’ve tried cutting myself some slack for the neglect. 

There are posts I’ve wanted to write and grief I’ve been processing that I’ve considered sharing here. But for now the order of the day is “Life rules”.