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Tuesday, February 25, 2014

Illuminating the monster; I have Chronic Fatigue Syndrome... and I finally know it.

I have 4 kids and I have Chronic Fatigue Syndrome; and no, they are not the same thing. If you have children, the comparison might sound cute or funny or even accurate, but if you have Chronic Fatigue Syndrome (a very real, often misunderstood debilitating illness also known as Myalgic Encephalomyelitis) you might find the comparison naive, insensitive or even infuriating.

I do not know the exact onset of the illness in myself. I only recently received a diagnosis, but as I learn about the nature of this condition, I've been able to trace significant symptoms back at least 16 years (with periods of remission, mini 'flares' and episodes of moderate to severe relapse.) I spent my teens believing I was merely battling mental illness and the years since believing it was a combination of sensitivity, vulnerability to depression and the strains of motherhood. In the back of my mind or somewhere deep in my body resided a persistent suspicion that there was 'more to it' -- a physiological cause that would one day come to light.
Finding the source after all these years has been simultaneously crushing and relieving.  I'm grieving the loss of  my fantasy that one day I'd beat this invisible monster, be free and function at 100% capacity without needing to take great effort to maintain my energy.  I'm also celebrating because the monster is no longer invisible (to me at least.) I finally know what I'm dealing with and my new found understanding  comes with new tools to care for myself and new language so I can communicate more about my struggles.  I'm releasing a lot of shame, finally understanding many of my (over)reactions or behaviors that have confused me for so long and I'm beginning to separate myself from my illness.
Because I've lived with and in many ways adapted to CFS for so long, my perspective on a healthy individual's experience with fatigue may be somewhat lacking. However, I do believe in periods of remission, I've been 100% functioning (or close to it) and I've certainly experienced relapses of CFS that are debilitating (down to 10% functioning.) 

With that in mind, I hope to explain some of what sets Chronic Fatigue Syndrome apart from the fatigue of being, for example, an over worked mother or the lethargy that comes with minor depression, lack of activity or even episodes of moderate to severe depression. While all of these things can co-exist with CFS, statements such as:

 "oh I totally understand, I only have 2 kids and they wear me out!"
 "It sounds like you are just depressed. Medication can help with that." or
 "I'm sure you'll feel better if you just get some exercise!"
 However well-meaning, are like telling someone with type 1 Diabetes:
 "oh, I totally understand, sometimes when I don't eat enough, my blood sugar gets low and I feel like crap!" or
 "You should just try eating better!" 
Or like telling someone with a head injury that they just need antidepressants (it's true many people suffering from serious injury or illness (including CFS) become depressed and antidepressants may be a helpful part of treatment, but they are not the treatment for CFS any more than they are the treatment for head injury, cancer, AIDS or Arthritis.)

What CFS feels like*


*Keep in mind I'm speaking from my experiences; severity of symptoms ranges from person to person and one flare or relapse may be more or less severe in the same individual.
 I use the term Relapse or Episode here to mean a period of weeks to years in which symptoms are fairly constant, drastically inhibiting normal function.  While I refer to a Flare, or PEM (post exertional malaise) as more acute periods of symptoms triggered during a relapse or even a period of relative health.

The best way I can describe an episode of CSF to a healthy individual is to compare it to a flu (without the puking.)  You feel generally unwell & lacking energy. Early in this current episode, before I got the flu-like aches and pains, I had already started explaining it to my husband by saying "it feels like the flu without the flu... or pain without pain." As it progressed, it started to feel more like the flu, and the pain was real pain.
Post exertional malaise (after only minimal exertion - like grocery shopping, running to catch a bus or an intense conversation) can feel just like that "oh shit" moment when you know a flu is coming on. It is so indistinguishable sometimes that even though I'm getting used to it, I keep finding myself thinking "remember, Lia, one of the kids might have brought a bug home. It might actually be the flu this time. Better wait to eat dinner. You don't want to puke all that up in half an hour!" but a couple hours pass and it starts to feel like the tail end of the flu, which can last for days, but at least i know it's PEM and its safe to eat my dinner.
 Also like the flu, you could sleep for 20 hours and wake up still feeling tired one night or you might find yourself awake tossing and turning because of body aches, chills and sweats the next night.
When you think you're starting to feel better (or you're just sick of laying in bed) before you've actually kicked the flu and get up to clean the house for a few hours, you regret it cause you feel horrible again (Moms I know you've all done this when the whole family was sick!) But unlike the flu, you can't just wait CFS out another day. After a week (or a month or 6 months,) you don't just get fed up with laying around and push yourself out of bed and find that it feels amazing to be active again, get the whole house cleaned, catch up on emails, phone calls, errands etc. During a relapse of CFS, every time you get up to tackle those things you hurt or shiver or sweat or crash (or all of the above plus some) at the end of the day. You have to pace everything out in tiny little increments with rest in between and there's never enough energy to get through half of the things you want to do each day. (for more on budgeting energy with chronic illness please read: The Spoon Theory written by Christine Miserandino)  To make it more frustrating, there doesn't seem to be an exact science to how much exertion it takes to cause PEM, or when exactly it will hit. It takes a lot of guesswork and careful attention to your limits on any particular day.

Exhaustion

The exhaustion from CFS is unrelenting.  I'm usually very sensitive to caffeine to the point where I know drinking a coffee or soda after 1pm will keep me up at night; but when I get to this point far past tired, I don't even feel the effects of caffeine. I could drink 2 cups of coffee and go straight down for a nap. For a while I was sleeping 10-12hrs at night and taking 1-2hr nap in the afternoon (any time my 20mo daughter was asleep and my other kids were at school or safely occupied, I'd sleep.)  The medication I'm currently taking helps me maintain a more normal sleep schedule; coffee gives me a little boost again, but I still have to be very careful with it -- it's kind of like if you've stayed up 24hrs straight... coffee might give you a boost when really, you should be resting (more on sensory overload later.)
The exhaustion is not just physical; it's mental and emotional too.  Some days after getting my 5 year old on the bus, dressing my 20 month old, getting her in the car with me (notice I didn't mention getting myself dressed? that's because most days I don't. To save energy, I keep on the sweats I put on the night (or 3 nights) before) and driving 5 miles a doctor appointment, I am so burnt out I'm near tears in the doctors office.  Of course this gives the impression that I'm severely depressed.  "No," I say, "Imagine you ran a marathon and then stayed up all night, your whole body aches and you're trying to answer questions but you can't think straight."  Yeah.  That's Brain Fog. It is already so fucking insanely frustrating trying to explain all the crazy symptoms of this illness, but then add to that you can't put a sentence together? well, yes... I suppose that is pretty fucking depressing at times!!
Brain fog causes a lot of typos... not just typing. It happens with writing, too (technically known as dysgraphia.)  Sometimes I write the second letter of a word first, or the first letter of the next word I was going to write, or something so unintelligible I'm not sure where it came from... the more burnt out I am the worse it gets.
When I've reached my energy limit (used up my spoons as Christine Miserandino would say. you really need to read her blog!) I find myself struggling to focus my eyes -- staring off into space.  I have to remind myself over and over and over what I'm doing, where I'm driving (usually at each turn or intersection) or what I came downstairs for 'put the bowl on the sink. fill water bottle...'  (then, oops! i forget the water bottle downstairs and don't have the energy to go get it.) I sigh a lot to myself 'sigh, okay, what's next? put away cereal. sigh okay, what's next? two more bags of groceries... pasta. sigh okay, what's next?..."


I lose words.  Sometime staring off for 15 seconds is enough to retrieve it; other times I give up.  Of course, these things happen to most people when they are tired, but with CFS it's amplified so, for instance, instead of accidentally calling one kid by the others name (K-Ja- I mean Logan! we've all been there.) I've completely spaced out my nephew's name while looking right at him, and drew a complete blank when talking about my goddaughter to a friend (I know their parents will probably read this & I hope they understand I'm sharing how extreme brain fog can be because I deeply love & cherish my nephew & goddaughter and those space-outs were quite disturbing to me!!)  
I find it extremely hard to focus on handouts the kids bring home from school (6 months ago we were homeschooling but my inability to keep up with that became clear long before the worst of this episode hit me) and numbers become extremely confusing. Even third grade math is sometimes challenging and I have to delegate to my husband. 
I write down everything important. I keep notes about what I ate and when I took my meds and my symptoms to try to make sense of it all, and so I don't accidentally take my medication 3x in a row or forget it completely.

Pain

Along with exhaustion and brain fog, PEM is often accompanied by pain.  Mine is  mostly in my hands, wrists and arms (probably because no matter how easy I go on myself, I still lift a twenty something pound baby several times a day.)  Sometimes it feels like I spent the whole day before lifting weights, or doing push-ups.  Sometimes it feels tingly, or creepy and fits the description of carpel tunnel syndrome (I was actually convinced that's what it was when that symptom flared up several years ago while I was doing a lot of sewing work.)  Sometimes it feels like a rubber band wrapped tightly around a bicep or forearm (on one or both sides.) 
I get chest pain which would really freak me out had I not had a chest CT done a few months ago, because sometimes it feels like pain in my lungs or heart. Usually, though it's just to the right of my sternum and seems to be in the joint or ligaments.
Sometimes my lymph nodes ache or tingle (an electric feeling) but they are rarely swollen.
At night my arms and legs ache and/or go tingly or numb.  Sometimes its a burning sensation, like when you come in out of a real cold wind that's chilled your skin and the numbness just starts to melt away.
Sometimes its that over-all flu-like ache that comes with a sort of internal quivering that feels intense and makes it hard to sleep even though the pain is not acute.

Sensory overload

One of the things I struggle with the most is sensory overload.  Noise, light, activity, being touched, conversation, even thinking can be overstimulating, especially when exhausted.  I have a hard time connecting in conversation, remembering details of events, or names of people I meet when I'm overloaded, and I have a hard time making eye contact even with those closest to me.  When it gets worst, I start to lose my shit. Then wondering why I'm suddenly losing it adds more stimulation and I start to feel panicked.  Then depressed.  I've spent a lot of time analyzing different stimuli that's triggered this state - psychoanalyzing myself, questioning myself, crying uncontrollably wondering 'WTF is wrong with me???'  Learning that this was part of CFS is a huge relief and I'm starting to learn to catch the feelings sooner and remove as much stimulation as possible (instead of creating more by over thinking it.)
When I feel myself starting to burn out, the urge to keep going is maddening.  Even when I can feel the crash coming, and can force myself to sit still, I can't forcing my mind to stop (or the kids to calm down) can be nearly impossible. 
  Its like when you are on the interstate and notice you're gas tank is nearly empty.  You know that slowing down will conserve fuel, but the thought of getting stranded on the roadside makes  you so anxious, you can't stand to drag that feeling out any longer so you just drive faster, praying you'll make it to the next gas station.
 I have not yet figured out a way to come down without drugs, herbs and mindfulness (usually a combination of all 3) Being still and alone is often not an option, especially if you have young children, but when I can get it (with help from dad,) a hot bath alone helps ease physical aches and anxiety.

Other annoying symptoms

(often exacerbated by coexisting conditions and/or medications to treat symptoms)
 - Tinnitus (ringing in your ears) 
 - over (or opposite) reaction to medications (often needing to start at the smallest possible dose)
 - Mouth soars, gum irritation, dry mouth, geographic tongue or thrush
 - Hair loss, brittle nails
 - muscle spasms, restless leg syndrome or itchiness
 - depression and/or anxiety
 - headaches that can last for months
 - pain or swelling in the lymph nodes
 - thyroid problems
 - weakness, dizziness, blood pressure problems, feeling faint or carsick
 - irritable bowel, irritable bladder, nausea, food or chemical sensitivities
 - sleep disturbances, sleep apnea, trouble with circadian rhythms 
 - trouble gaining, losing or maintaining weight


The big picture


I want to end this by sharing (especially for all my friends and family reading this) that this episode has been by far the most difficult I've experienced physically and at points, the emotional has been extremely difficult to manage as well.  I've been immersed in this illness -- experiencing symptoms, reflecting on the course of it throughout my life, accepting that I am a person who is chronically ill (still seems weird to say) and that relief will probably not come in the form of a cure but in managing symptoms, pacing and appreciating remissions... Not to mention fears that I might have passed down a genetic predisposition to any of my children... I'm in a phase of examining lots of difficult symptoms, feelings and emotions, some of which I am opening up about for the first time.  But it's a process of untangling myself from the illness... So when I seem to be complaining or focusing on the negative, or not having anything but CFS to talk about, know that this is not who I've become.  I'm leaning into the illness, not becoming lost in it.  I am not stepping towards defining myself as an ill person, but stepping towards knowing who I am along side illness. I'm learning how to take better care of myself and how to be open when I struggle rather than ashamed.  So while this phase might also be uncomfortable for you to hear about, and might even at times create distance between us, it is not pulling me away from you... This process is moving me towards being a more genuine, more aware version of the person that you've known and loved.


Special thanks to my husband, Jason for going through much of this with me, being loving, supportive, and extra helpful around the house; to my kids for accepting that they don't get the whole mom I wish they had; to my family and friends who have watched me struggle over the years, who help out with the kids, offer emotional support, and listen to me cry when I need it (Hollie, I'm thinking especially of you!)  And thank you to the doctors who listened to me compassionately, who were willing to investigate what they didn't understand, and who remain open minded when I come with suggestions for tests or treatment (I cannot say the same of all the doctors I've seen.)  Many people struggling with chronic, invisible illness are faced with disbelief from even those closest to them which must be devastating... I'm so thankful to be blessed with multiple circles of amazing, compassionate, supportive people.

I hope to share more here soon -- I'd like to write more about how CFS differs from mom-fatigue, and more about the difference between depression and CFS, and share more about how I felt during flares (when I didn't know they were flares of CFS) versus how I feel looking back... but it's taken a lot of time and energy to get this far, I have far more ideas to share than I have energy to write them, so in the interest of pacing myself... I will write more when I can.  Thank you for taking the time to read and care about all of this. And I will be happy to address any specific questions as best I can in the comments or via personal message.


Wednesday, September 25, 2013

Your birth videos are being stolen for profit: what you can do about it

Since posting The unassisted birth of Jason Shawn II on Youtube I've periodically found, through a simple Google search, that the video (and less often my other birth videos) has been re-uploaded by another user without permission. I've always filled out Youtube's copyright infringement form and the content was quickly removed.

Recently, though, I discovered that there are dozens of youtube pages (I suspect operated by the same individual or pseudo-business) re-uploading hundreds of childbirth videos that they do not have permission to use and making money off of Youtube's ad partners.  In many cases, they are changing the titles of the videos (or uploading the same video multiple times with multiple names) to avoid being found by rightful owners searching for their content.  The Unassisted Birth of Jason Shawn was posted as: The unassisted birth of Jashua, the unassisted birth of Mason Brown, and Unassisted birth of Swedish girl (just to name a few.)
I spent hours searching through content, filling out copyright complaints, and as I did I saw many other birth videos that I know were stolen (and many renamed) like my own.  Some may belong to you.

Why does it matter?
   I can hear the naysayers already "anything you put on the internet is no longer yours." "why would you post a video of yourself giving birth if you don't want it to be spread all around the interenet?"  To those of you wondering, here's why it matters:
   I put videos of some of my most intimate/vulnerable moments online because I believe that awareness of natural birth is very important and I had something to contribute to that awareness.  I take a lot of shit on my own Youtube page for my birth choice, and I've been willing to accept that for the greater good of providing information and support to other women/families through their own birthing journeys. I actually appreciate my videos being shared because many many women have expressed gratitude for having access to them.  But here's the thing: Youtube makes it very easy for users to share videos on their own pages, blogs, Facebook etc. and when you Share, it links back to my page so I can track views and see any questions or comments directed at me.  This being so easy to do, the only reason for re-uploading content is to increase traffic on the fraudulent page, and if the page is using Google's ad partners to monetize, they can then make money off of views of your content all the while, you get no notification of questions or comments -- maybe they even changed
your child's name, which I'll admit, makes it feel a little more personal.

What to do about it?

I spent a lot of time reporting content (and wondering how I could contact all the other mothers whose videos I was seeing on these pages) before I learned that you can sign up for content ID on youtube (http://www.youtube.com/t/contentid.) When you register for content ID, new uploads are scanned for your content and if it is found, Youtube will take action.  Depending on the option you choose when you sign up for content ID, the re-uploaded video will either be blocked, you will be able to track activity on it, or ads will be enabled and you will be able to earn money from it.

If  you shared birth videos via Youtube, I encourage you to sign up for content ID to keep fraudulent users from making money off of your videos.  

If you watch birth videos on Youtube, I encourage you not to watch or subscribe to fraudulent channels and to notify the rightful owner if you come across a video that appears to be stolen.

Indicators of a fraudulent page:

  •           All of the videos were uploaded the same day
  •          Multiple uploads of the same video
  •           Appearance is exceptionally grainy
  •           Cheap looking, nonsesical ads and logos appearing on the video
  •           Anything with a purple “natural living tv” logo
  •           Generic looking page built with stock photos with no info about who’s running the page
  •           Page titles like “naturalbirthTV” “birthtube” “birthbabychannel” “realgivingbirth”
  •           No mention of the individuals/families in the description
  •           Video title resembles title of another popular birth video (ie."Self directed birth of Lena Joy")
  •           Titles like “she births baby natural” or “natural vaginal childbirth unassisted water homebirth” “young Russian mom giving birth in water” “Swedish girl births baby” “lady give birth”
To see examples of these pages, or to look for uploads of your videos you can enter the rabbit hole by checking out the following list of pages I found my content being used.  Remember, you don't have to manually report each instance of theft like I did. Content ID will do it for you. Sign up here.




I

Tuesday, August 6, 2013

Branding: my rite of passage into my 30's

July 7, 2013 was my 30th Birthday.  This felt like a significant milestone for me, a new phase of adulthood, stepping closer to my inner wise woman -- the elder within.  I hope to finish my journey as a mother to babies here and gain back some independence as my children grow into their own.
I decided I wanted to do a rite of passage, and quickly settled on an overnight canoe trip with my husband and a home-made spiral brand on my right shoulder.
The spiral represents, for me, the path of struggle, resistance, joy and creation.  The trip would be our first overnight without any kids since our daughter was born last year.  My plan to have my husband apply the brand had special symbolism because it was representative of my submission to a deeper trust.
In my research during the planning stage, I read about tribal rituals, and also some of the history around the branding of African slaves by American slave owners.  Connecting with this history (and all the power, pain and healing associated) felt like an important part of connecting to my distant grandmothers -- the ancestors at the root  of the human experience which began in Africa.


I woke up early the morning of my birthday, built a fire and enjoyed a quiet sunrise alone as my husband slept.
I relaxed in the sun...

And tried out my brand on my knife sheath to get a feel for how hard it would need to be pressed and for how long. 



This is the brand I made out of a hose-clamp bent with a needle-nose pliers.


After Jason awoke, we spent some time discussing the positioning of the design (he wanted to be sure he got it just right) and how it would be applied.  We found a small log he could use to press it down evenly, and practiced on my thigh while the brand was cool.

We heated it in the campfire...


 psyched ourselves up some more...


 Cleaned the area with Betadine... and went for it!

My main concern was determining the right length of time to get a good scar.  After discussing it a while, I concluded that I'd be best off thinking not in terms of how painful it was (and risk panicking and asking him to stop too soon,) instead focusing on my awareness for my own body and when the burn felt deep enough.  I used to self-injure as a teen, including some minor burns, so I drew from that experience a little.  It felt good to apply those dark memories towards something celebratory. 

I think it was between 1.5 and 3 seconds that he held the brand to my skin when I felt it had burned sufficiently. When he removed it, I felt immediate relief from the pain. It looked really pretty. My only concern at this point was that there was so little pain I thought it might not scar like I wanted.  As it has healed, I've determined that a shorter burn time actually would have been ideal (as you will see further down the page, the skin around the spiral was burnt causing the pattern to run together)



 7/7/13 (immediately after applying the brand)


 I bought some water-proof bandages which I attempted to use for swimming. In the photo below you can see that I've applied some antibiotic ointment.  Mostly, though I kept it open to the air and applied Tea Tree Oil a couple times a day.


7/8/13

These photos were all taken by reaching my arm around my back, sometimes in poor lighting, so the quality isn't great; but I wanted to share about the healing process because I would have liked to see this kind of progression when I was planning my brand.


 7/9/13

 7/10/13

 7/11/13

 7/13/13

 7/14/13 - 2 weeks
(this was after a day of swimming with a "waterproof bandage" that wouldn't stay stuck.)



7/16/13
It was right around 2 weeks that it started to hurt (prior to this point it felt mild like a sunburn) 

 7/19/13

The pain was significant for several days...

 7/20/13
And some days I thought it was just going to turn into an ugly blob.  Note: Unlike a tattoo, where you get to enjoy the artwork as soon as it's etched into your skin, the brand is a process. I found myself contemplating my own sense of confidence and trust far beyond the application.


 7/21/13 - 3 weeks

I put on extra Tea Tree oil when it looked nasty like this...

 7/23/13

 7/24/13

Here is about where the pain subsided and the scar started to become visible under the scabs.

 7/25/13

 7/26/13

7/28/13 - 4 weeks


 7/30/13

7/31/13 

 8/1/13

 8/5/13 - 5 weeks

8/6/13

The healing process is not complete. The skin is still flakey, and I know the appearance will continue to change over time. But there you have a month of my home-made brand!

Monday, July 1, 2013

Why I Will Rally to Improve Birth

From 10am to Noon on September 2, 2013 (Labor Day) you will find me at James Madison Park  Rallying to Improve Birth as part of the international movement hosted by ImprovingBirth.org



“This movement isn’t about natural birth vs. medicated birth.
It’s not about hospital birth vs. home birth or birth center birth.
It’s about women being capable of making safer, more informed decisions about their care and that of their babies, when they are given full and accurate information about their care options, including the potential harms, benefits, and alternatives.
Then, within that choice, they are treated with dignity and compassion.”

~ Dawn Thompson, Founder of ImprovingBirth.org



ImprovingBirth’s mission is one I am proud to stand behind and offer my time and energy to as a volunteer coordinator for the Madison, WI rally.  On September 2, I will be rallying for better birth practices for all of our sisters, aunties, daughters, nieces and loved ones…

Signs I made for last year's Milwaukee, WI Rally

I will rally for Ashley*, who is still suffering, to the point it has compromised her marriage, after a traumatic birth over a year ago.

 I will rally for Sara, who did not consent to having her waters broken, yelled “STOP!” as a doctor inserted his instrument into her vagina, and had to kick him away to end the procedure, when he ignored her cries.

I will rally for Jessica, who was strong-armed into a Cesarean for “failure to progress” and years later, had to travel over 100 miles to see a doctor who would support her VBAC. 

I will rally for Amanda, who wanted to birth on hands and knees, but instead was held down by nurses and given an episiotomy while her doula protested “No!” and she screamed, “Don’t Cut me!”

I will rally for Hanna, whose doctor threatened to call child protective services after her son’s birth when she refused to supplement with formula.

I will rally for Elaina, whose induction for “big baby” turned into a Cesarean Section and NICU stay for a 7lb 4oz baby boy.

I will rally for Camille, who could not afford to pay out of pocket for a homebirth midwife her insurance wouldn’t cover.

I will rally for Lily, who felt helpless as she watched her daughter recoil, screaming “NO!” repeatedly as a nurse forced a hand into her vagina for a vaginal exam.

I will rally for John, who was told he couldn’t hold his daughter after his wife’s C-section, because the baby had to be admitted to the nursery first.

I will rally for every woman who has felt abused, coerced, talked down to or disempowered during the birth of her child; for every father, grandmother or doula who watched helplessly; for every baby whose first moments at his/her mothers breast were disrupted unnecessarily; for every family struggling to heal from birth trauma.

I will rally because my own children’s births (including one in a hospital) were magnificent events I recall joyfully; because a healthy baby is not all that matters; because unassisted birth is not always a safe option; because I know that birth can be complicated, even dangerous, and not every birth will be as blissful as mine, but most of them could be

I will rally because maternity care in this country and around the world hasn’t caught up to the standards of evidence-based care; because mothers and babies and families deserve more options.
I will rally because I know we can do better.

To find out more about ImprovingBirth, to become a sponsor, or to find a rally location near you, visit: www.improvingbirth.org


*all names and some details have been changed to protect anonymity

Where Birth and Death Meet: Remembrance, Grief and Celebration


A year ago today, as I held my newborn daughter in my arms, other members of my online Due Date Club held their newborns, a few were heavily pregnant, anxiously waiting for labor to begin, and one mother among us (and her family) faced the worst pain imaginable… Their daughter Clara was born still.

When a baby dies, is born still, or lost to miscarriage (sometimes before their existence has even been acknowledged,) grieving comes with extraordinary challenges – Extraordinary loneliness.  The pain of losing a child is so excruciating that anyone who has the luxury of recoiling will; anyone removed enough from the tragedy to put it out of their minds, even for a moment, will.  For parents who have lost a child, there is no withdrawing from sorrow, no putting it out of their minds; the only option is to move through it.

Sadly, those who have lost children find themselves not only alone as they grieve, but alone as they celebrate their babies’ lives.  A family might have weeks or months of memories beginning with a positive pregnancy test, while the outside world sees only a child who never took a breath.  The joy and love and distinct personality remain a beautiful secret and all anyone will ever know of this exceptional little being is the hole that was left behind when it was ripped away. How do you celebrate a birth that everyone else seems to see as a death?  How do you share your joy when it is linked so inexplicably with a profound pain people want to shy away from?

Today I offer my heart – in grief and in celebration – to those of you who have lost babies.  When I look at you, or read your story, I don’t see someone who is broken; I see incredible strength.  I cannot sink fully in to that unimaginable pain with you; but I hope that my thoughts and prayers, and the thoughts and prayers sent out by many others attach to you like threads that hold you and lift you (even if it’s just an inch) from the depths of sorrow.

As a mother (who has experienced early miscarriage,) I know that your love started growing the moment you had an inkling that you might be pregnant. I know that your baby’s personality became more apparent each day, that (s)he transformed you, brought you joy, enhanced your very existence; I know that even if (s)he never took a breath, (s)he changed the world immensely.

Today I honor and celebrate the many babies who have touched my life, though we never had the opportunity to meet.  Among them are: Clara, Benjamin, Milo, Haylee, Patrick, Mary, Aquilla, Emily, Ari, Gemini, and Lanea.  I invite you to leave a name (or names) in the comments along with anything you’d like to share about a baby whose brief life touched yours.

If you or someone you know is experiencing the loss of a baby, or if you’d like to reach out to support those experiencing loss please take a moment to explore the following resources:





Friday, June 14, 2013

Something's Got to Give

A friend calls, “I need some super-mama vibes.” She says rather frantically, “My husband usually does bath time and he’s not home tonight, it’s already past bedtime, my son (1yo) is getting crabby and I have laundry to bring upstairs and I was really counting on having this time to get things done.” 
                “If I’m the example of the super-mama,” I tell her, “then I’d say, skip the bath for tonight... and the laundry… You should see my laundry room. I think it’s been two weeks since I put away the clean clothes.”  
It seems so simple when you’re telling someone else to do it, but by the time I’m off the phone, I find myself already pondering my own impossible To-Do list.  The worst part is, it all looks so simple and manageable on paper.  But the To-Do list doesn’t include cleaning up the poop I stepped in on the way to the bathroom first thing in the morning (Wasn’t the 4yo learning to wipe himself supposed to make life easier??) or comforting the kid who scraped his knee for the third time today while the 1yo makes a mad dash for the toilet and reaches in to splash in the water.  Those nice little lesson plans I wrote out for our homeschool time didn’t include time for “Mom! He’s got my pen!” “No! This one’s Mine!” or “He took my seat!” “I was sitting there first!” I didn’t factor in the baby spilling someone’s juice, or grabbing the pen from my hands, or shutting down my laptop mid-email; and no matter how well organized my calendar is, I haven’t figured out how to schedule which days the little one will forgo her nap, or stay up most of the night nursing, or when the weather will turn and we won’t be able to spend time outside.
...And I refuse to put sex on my To-Do list like a chore, but there's got to be time for husband and wife, too!
I’m relating my struggle budgeting time & energy with my grocery budget, and how, after hearing my complaint about how hard it is to save money while eating healthy, a friend suggested “It’s easy to eat healthy with little money if you forgo variety.” Because that is what it really comes down to – my grand plans for meals or activities or projects being beyond my actual capacity.  We’ve had a friend staying with us for several months now – a part-time co-mother who has provided support with the kids and help with housework – and I still rarely feel caught up on all the things that should be getting done.  So she’s about to leave on her journey, and I’m seeing that even if I could split in two, I still couldn’t live up to the standards of wife, mother, teacher, friend & woman that I’ve set for myself.
Fuck. 
And while I’m cursing, I must add, now that I’ve finally come to terms with the downstairs bathroom perpetually smelling like pee, it’s taken a turn for the worse.  For the last week it’s smelled like shit; I can’t find the source and I’m kind of scared to.
Something’s got to give.  But what?

The theme for our women’s circle this month is connecting with your inner wise woman (elder.)  As I struggle with structure and balance and simplifying our daily routine I wonder, what advice would my 60 year old self have for me today?  What advice would my grown-up kids have? What will my husband remember most? I’m guessing none of them would have much to say about it taking me three weeks to remember to call and schedule my oil change, or staying home from the pool today (even though it was “Sooo unfair!”) They probably won’t care about the floors being sticky and covered in crumbs even after a major attempt at housecleaning just 2 days ago… or the bathroom smelling like shit. But even if I boil it all down to one single goal -- making every effort to show everyone (including myself) the love and affection they deserve -- is one woman's best ever enough?

Wednesday, May 29, 2013

My First Birth: the solo unassisted birth of Kyle James


     The contractions started as a tightness in her head and chest as if they were constricting her blood vessels.  They continued on like a rush of adrenaline that radiated out her limbs then swirled around her abdomen.  They concentrated intensely there closing like a fist, pulling her belly into a tight hard ball.
            She labored alone in the small apartment overlooking a gas station and a laundry mat.  Her boyfriend lay passed out drunk on the couch.
            It could have been the storyline of a television drama full of suspense outlining the tragedy of teen pregnancy.  She was, after all, a month shy of 20 and by some accounts, still a girl.

 But there was no frantic call to 911.  There was no ambulance ride, no paramedics or doctors saving the day.  There was no panic.  This girl was no cliché.  She didn’t doubt for a moment she was right where she needed to be.
            Within her an image had taken shape.  It was an image of a young woman standing, her round pregnant belly protruding in front, a pair of majestic wings unfolding in back.  The image stood tall and certain, wings outstretched as if ready to take flight.
            She felt herself becoming this image and for the first time, began to see the beautiful complexity of her human form.  The wings- her spirituality and intuition- connected seamlessly to the bones and flesh of a body planted firmly in a world of science and intellect.
            She was not at war with this body.  It was not a mere vehicle as she had once seen it; a malfunctioning machine she was trapped inside of.  It was more than a canvas adorned with inked skin, self-punishing scars, colorful fabrics and metal rings.  It was no longer an obstacle to her enlightenment; a shell, within which she hid, disconnected from the rest of the world.
            This body was a source containing vast reserves of knowledge to be explored, strength to be uncovered and passions to be revealed.

The kitchen smelled clean and she enjoyed the smooth fresh feel of the floor under her bare feet.  The smell of new plastic hung in the air.  The inflatable pool imposed itself on the room; positioned in the center like a giant nest ready for eggs.
A low sensual moan escaped as she exhaled, watching the water flow into the pool.  Everything else faded to the background as the contractions intensified.  When the pool was full, she slid into the warm water.  It was like entering another plane; the broad supple walls, a fortress.  Everything became softer and more focused.
  The contractions kept coming steadily like waves.   She alternated between the pool and the toilet, her well-worn baby doll nightgown dripping behind her as she walked the path of carefully laid out towels back and forth from the bathroom again and again.
 In the portion of her mind allocated to thinking critically, she remained conscious of time.  She hung a handmade sign on the door downstairs reading: Labor and Delivery in Progress. Please Do Not Disturb.  Through the six hours of labor, she reminded herself to stay hydrated and to urinate regularly.  She assessed the labor by performing periodic self-examinations between contractions; a fingertip dilated at 3:00am, well over two fingertips by 5:00.  At quarter to eight, she could no longer reach the entire opening of her cervix.
She abandoned her perch on the toilet completely in favor of the warmth and protection within the pool.  The contractions became overwhelming at their peak, shutting out her surroundings and leaving only a pinhole for the light of the rest of the world to shine through.  In the lull between contractions she relaxed in the glow of a lucid comfort, like the clear and peaceful calm within the eye of a hurricane.
Her moans became more animal, resembling growls, moos and grunts.  She began to turn anxiously from front to back as if to escape the pain, warm water sloshing around her as she floundered.  She leaned heavily into the soft sides of the pool and for a fleeting moment thought “I don’t know if I can do this if it gets any worse.”  But she would do it.  She was doing it.
She waited for the urge to push to become undeniable, knowing that her body would work more effectively this way.   She held back for a couple of contractions back to back, and then started shuddering and pushed.  Her bag of waters released into the pool with a ‘pop.’  She worked with the next contraction.
She felt her baby moving out and reached down expecting to feel his head between her legs.  Instead, she felt a soft, smooth bulge of flesh that was not immediately recognizable.  Her conscious mind searched for an explanation as her fingers groped her genitals expecting to find the groove between two little butt cheeks.  “How could he have gotten turned around without me noticing?”  She thought, surprised, but not afraid.  Then, as she felt toward the inside of her thighs, she made an amazing discovery.  The skin she was feeling was her own.  The lips of her vagina were numb, pulled tight and smooth around the baby’s head preparing to spit him out into the world.  She was struck by her vagina’s elasticity- its ability to transform into a shape so totally unrecognizable with such ease.  Though she felt pain and the pressure of the baby’s decent through the birth canal, her vulva only felt stretched.
Her hand moved instinctively to support the taut skin of her perineum.  Before she could second-guess her technique, her hand began to fill up.  The baby’s head was turning in her palm but the contraction worked with such force that all she noticed was the unbelievable roar that accompanied the expulsion of his head.  Her body seemed too small, even fully pregnant, to produce such reverberation.  Perhaps what surprised her most was how intentional it sounded; Fierce and uninhibited like the voice of a tiger claiming her cub. 
As she processed the intensity of the roar, she became dimly aware of the baby’s head outside her body.  The rest of him followed, sliding out easily into the water.   In an automatic response requiring no conscious thought or instruction, her arms reached down, scooped him up and pulled him close.
“It’s you,” she sighed, looking deep into the slate blue of his eyes.  Her words seemed to echo in the quiet hollowed out by that scream.
 The baby looked like a creature from a more perfect planet drinking in his first moments in a new world.  He was smaller than the little clothes neatly folded and waiting for him.  His head, perfectly round and fuzzy like a peach, rested in the crux of her elbow.  His long thin limbs moved cautiously, exploring their new freedom.
He stared at her knowingly, and wrapped his long fingers around the soggy strap of her nightgown, claiming her.  The blood gradually stopped flowing through the cord that connected them as they focused intently on one another’s movements but she noticed only the energy he radiated.
Suddenly, with a rush of adrenaline, clinical thoughts burst in; an awkward clumsy interruption.  They stumbled over her intuition screaming, “You haven’t checked if he’s breathing!?! Is he okay?!?”  “Of course he’s okay,” she thought, “He’s interacting with me.”  But the nagging persisted, loudly, “He hasn’t cried!”  Eager to appease, she turned his little body over her arm and patted his back to allow any fluids to drain from his nose and mouth.  He squawked angrily, leaving no doubt that he had a healthy set of lungs.  She pulled him close again, regretting the disturbance.
She looked at the time (8:29 a.m.) and gently suctioned his nostrils with the bulb syringe.   She offered her breast, but he complained, uninterested.  The water was getting cool.  She stood up carefully wrapping him in her arms and left a final set of wet footprints behind as she walked the path of towels to the bathroom one last time.  She sat down in the bathtub and let the warm water run over them.
In the movie version, this would be the turning point.  The girl in this story would emerge on the other side of her experience, an enlightened woman, exuding strength and ability.  But I did not suddenly arrive at the summit that day...
     Kyle's birth was a turning point among many.  It was the scraping away of one layer of insecurity that brought me closer to myself and closer to my calling to support other women; but there would be many more layers to scrape away.  
 I see a whole new woman when I look in the mirror today, ten years later, but I know that girl was me and I am her.  I held all the same power then.  All the truths and knowledge that took me years (and three more births) to uncover and articulate were within me from the beginning.  When I prepared to give birth to Kyle, I felt I had to exclude all distractions to preserve his safety and honor our experience.  My inner voice was powerful and certain, but it came to me as a whisper that I could only hear away from the chatter of so-called authorities.  As I focus now on creating a Self Directed Childbirth Course, I'm reflecting on how to help first time mothers uncover their power and express their truth so they can experience birth the way I have -- so they can hear their own wisdom without needing to hide away alone away from other voices.