Earth Mama

How beautiful is this sweet earth mama? 

Did I mention she's one of my best friends?

And that I made her that crown so she'd feel like a queen?

And that she let me paint her belly?

And that one of my other best friends took the picture?

On Pufferfish and Sweaters in July

If you didn't know, for a while when I was little, my dad was a stay at home dad. When my sister was born two months premature, my dad stayed home with us and my mom went back to work.

Being a stay at home dad in the 80s was not nearly as glamorous as it is today. There were no diaper bags for dads, or fancy baby carriers with slick manly colors, or even stay at home dad groups. There weren't really any other stay at home dads. Were there? As of yet, I have never met another person my age to have had one.

Here are some of my favorite memories of growing up at home with my dad and why I think having a stay at home dad is probably the coolest thing ever.

My dad always let me wear whatever I wanted. Most of the time I ran around our neighborhood with a bib tied around my waist and bowling shoes on...and that was all. I kid you not my friends. That was all.

One time, we were leaving the neighborhood, so I had to actually get dressed. I picked out a really thick, puffy sweatshirt with Care Bears dancing around a rainbow printed on it. It was so beautiful, I just had to wear it and after some pestering, my dad relented. It was July. We lived in a suburb just outside of Cocoa Beach, FL. Yes, yes, I was wearing the bowling shoes.

When my dad wasn't busy with all his dadliness, he was a grad student. This meant for many of our hours together, he was half watching me, half working on his Masters of Divinity. This also meant that there would be times when I thought he knew a magical language that allowed him to communicate with ordinary inanimate objects but, really he just zoned out while taking the trash out and was now standing on the side of the road practicing Hebrew while staring at dumpster... as I stood nearby and watched in awe.

After my sister was born, we spent a lot of time in the hospital visiting her and my mom. I was ok with it because the cafeteria had the best grilled cheese I have ever had in my life. I have spent many lunch hours trying grilled cheeses from various delis and grills in an attempt to recreate the melty goodness of that hospital's. That is, until my mom revealed to me that it probably only tasted that good because my dad had not been feeding me. My dad protests, but until I find a grilled cheese of equal deliciousness, he's guilty.

On that note, my dad and I kept an organic garden and I got to eat tomatoes right out of it without washing them. And oranges, because we had an orange tree, too. That was probably all I ate some days.

Here is a list of other things that I remember eating:

- crayons

- construction paper

- play-doh

- sand

- fingerpaint

- chalk (my favorite)

- Elmer's paste (2nd favorite)

- rubber art erasers

- highlighters

We liked walking around our neighborhood looking for Beatrix Potter characters. My favorite was Mrs. Tiggy-Winkle... which is what I called one woman in our neighborhood... to her face. My dad was cool with it. Also, I ate her roses.

My dad often tried to bring me fishing. He did not want me growing up to be all prissy and girly. I needed to learn to do non- gender specific activities and get a little dirty. We got some cane poles and went down to our local pier. The first time we went, I caught a pufferfish and my dad yelled to me not to touch it so I wouldn't get hurt. Another time we went, I caught a sting ray and my dad yelled to me not to touch it so I wouldn't get hurt. I didn't like fishing much after that. So, we went to the beach. One time, a  Portuguese man o' war washed up onto the beach and it was so pretty and pink and blue and shiny. I ran up to it to get a better look and it washed onto my foot. I was rushed to the emergency room... I have an intense fear of fish touching my feet. I wore aqua socks for years, but I've upgraded to Chaco's now that I'm an adult.

You know, all in all, my dad did a pretty good job. I think I had the coolest childhood out of all of my friends. I had so many awesome opportunities to explore and enjoy nature and my love for the outdoors and the earth has followed me throughout my life. My only concern is that I seriously cannot remember my sister being a part of any of these memories. Why is that? Dad?

Thanks dad! You didn't mess me up too much!

The Dangers of Holding Your Baby

Beware of holding your babies my friends. For thousands of years, mothers and fathers have been struggling with the grim reality that succumbing to their natural inclination to hold their babies would ultimately result in their precious infants' suffocation and death.

It is in these dark times that we exalt you, oh woman of Los Amigos, champion of babies, for rescuing these precious lives from the dangers of their fathers' shoulders. Thank you, dear lady, for not only noticing that my baby was at risk, but for heroically heralding the news to my husband and also all others who were waiting for their take out last night so that he may be made an example of and no other would tread the dangerous terrain of allowing their daughters to sleep on their shoulders for any extended period of time, not even ten minutes.

For we all have been made aware of the severe consequences of attempting to wear your baby in a dreadful and dangerous wrap, sling, or carrier and few dare to do so, but there are still those of us who are cavalier enough to actually hold our children in our arms.

It is true that modern advancements have lowered the risk of infant suffocation by presenting to us bucket car seats and pacifiers. Luckily for us, as you most noble Los Amigos woman pointed out,  my husband had at least remembered to use the latter, which allowed our daughter to evade a certain death. As for bucket car seats, plagiocephaly is a small price to pay in exchange for your child's life.

Please do not risk it my friends, put your babies down. It's for their own good. Your child does not NEED to be held. It is selfish and dangerous to assume so.

Thank you, kind woman. I exalt you. My daughter owes you her life.






On a serious note, I sincerely apologize to anyone who may stumble upon this and is offended or hurt by the mention of infant suffocation. My heart truly aches for any person who has experienced such a loss. 

Be Still and Know

Be still and know that I am God, I will be exalted among the nations, I will be exalted among men. Psalm 47:10

I walked alone that evening as the sun dripped purple and pink and orange behind the blackened silhouettes of the lush late summer oaks. I walked heavy and swollen and ripe with you, slowly, slowly, as I felt you yearning to be born. My body clung to you; it would not let you go. And I walked. And I heard it then, while we walked that long trail, the trail that was only beginning that night before you were born. It whispered to me.

Be still and know.

That first night I held you. I struggled to lift my head to see you, to look into your squinting, screaming eyes. My body tingled and shivered as the anesthesia numbed out the struggle of your birth. The nurses flitted around you and the doctors around me. Who in the operating room acknowledged the precious something taking place? Who in the operating room recognized a mother gazing upon her most precious reward for the very first time?

Be still and know.

Those nights we sat in bed and you sweetly suckled while the cicadas chirped outside our midnight window, the leaves rustling gently with the late July breeze. The house rested silently; dark and cool with only us to witness it. I gently crooned to you. And we fell asleep together, your tiny hand in mine.

Be still and know.

Those days you first trembled. The times I lifted you from where you dreamt only seconds before, shuddering, shivering in my own shaking arms. Those first times I held your buttery cheek to mine and sang to you those worn out lullabies, voice cracking, all alone.

Be still and know.

While we first sat on the bed in that tiny dark room, two dozen sensors glued to your head. You nursed and dozed in my arms and I sat rigid, almost afraid to breathe, staring the wall. A TV remote sat beside us, a magazine, a book, and I sat clammily clutching the red alert button and stared blankly at those ridiculous translucent bear wall stickers stuck over that icky green paint. For an hour.

Be still and know.

As the doctor’s words crashed over us in that chilly, fluorescent exam room; tuberous sclerosis, brain problems, delays, disfiguration, tiny tumor. We smiled actually, said thank you, shook hands with the doctor as he left. And there, as the universe culminated and somehow we kept moving…

Be still and know.

When you screamed, tiny and helpless and thrashing and I listened to you feeling tiny and helpless, my heart thrashing as an IV was inserted into your delicate, three month old arm.

Be still and know.

That night in the hospital when the seizures took you from my arms hour after hour after hour and not knowing if you would ever come back to me...

Be still and know.

With every test; your brain, your heart, your kidneys, your lungs, your blood, your urine, your spinal fluid, your blood, your blood, your blood. Every time I held you down and stroked your face while you screeched and flailed, confused, your eyes locked on mine just pleading. Every time my voice broke a little while cooing to you; you’re brave, you’re so strong and beautiful, it won’t last long, this will all be over soon baby, oh sweetie, I love you… I’m so sorry.

Be still and know.

The hours and days and months we’ve waited. For results, and more tests, and information, and seizures… and for the world to crumble, or not, we’ve waited.

Be still and know.

With every test that comes back clear and my heart jumps a little and a little piece of that big ominous boulder of losing you is chipped away. And I rejoice.

Be still and know.

Now, as we wait. Now, at this moment, in this place where, like anyone else, we wait. We do not know what tomorrow will bring us, or today, or this hour, or this very next minute. I sit here in this second of tranquility and hold you sleeping in my arms and I do not know if, in an instant, you will awake, slowly gaze away and succumb to the tremors that constantly beckon you.

But now when I anticipate what might be next for us, a surreal feeling of relief washes over me. And it is not because I believe that it won’t be painful, because I don't.

It is because I’ve been still.

And I know.

And that makes all the difference.

Wordless Wednesday: Lambie-wearing

Aiden loves "Lambie-wearing"

Natural Parenting and Epilepsy

About a year ago, I became immersed in a new way of living. Expecting my second child and already an avid "tree-hugger", using handmade cleaning and beauty products and buying locally, organically, handmade, or second hand products whenever possible, taking my lifestyle one step further into the realm of natural parenting was well, quite "natural" to me. I had changed a lot since the birth of my son, Aiden and I wanted to bring my new child into a world that respected people, animals, and the earth, as well as giving my sweet babe the best chance possible to grow into a healthy, secure adult.

My first step was to prepare for a natural delivery, which would be difficult, as I had had a previous c-section. This was a huge hurdle for me; my husband didn't approve, my parents didn't approve, my provider didn't approve, but I did the best I could (see Evelyn's birth).

When Evelyn came into the world, I was excited about breastfeeding and babywearing. I had done the research, I had obtained the goods, and we all slid into our roles quite harmoniously. Breastfeeding was a breeze and I loved my ring sling. I remember being proud that I had successfully managed to change my clothes one day while wearing her. It really helped facilitate a strong bond with her while I was able to maintain the connection I had with Aiden by continuing our day to day routine. And bedsharing! We were both sleeping through the night as soon as we came home from the hospital. She nursed and I dozed. Things were working out quite nicely.

Yes, attachment parenting, bedsharing, breastfeeding, they made things all too easy for us. Dave and I cockily resumed normal activity pronto. We fell into the family of four role with way too little friction. We felt pretty awesome about ourselves. Natural parenting made our lives easier, but we didn't know by how much until Evie was around four months old.

It was at four months that Evie began having seizures . We were terrified, our world was turned upside down. Looking back now, I realize that no one had even told me she was not going to die. Maybe they didn't know I didn't know, and I didn't know to ask.

Over the past few months, we've slowly been putting our lives back together. It's not so much the seizures that have caused the most commotion. It's the doctors appointments every week, the medicine in the middle of the night, the dinners left uncooked, the laundry left undone, the things left unsaid and undone that leave Dave and I on different sides of the universe. These mundane little things that allow a family to be functional, these are the things that we're struggling to re-establish.

And now, instead of allowing us to be rockstar parents who just drift down the stream of parenthood merrily-a-singing, natural parenting; breastfeeding, bedsharing, and babywearing, is the only thing that gives us some shred of sanity, of stability, of hope, in this upturned world we're treading in.

Breastfeeding. Without breastfeeding, there would be a whole slew of other tests that Evie would have to undergo before coming to this place we are now, where we've done everything we can do and still have no answers. There would be questions about allergies to formula, whether we had watered it down too much, whether or not it was contaminated. Instead, she underwent a few blood tests and we know she has no allergy, deficiency, or disorder that is causing this.

Breastfeeding has also been very soothing to us throughout this ordeal. When I am able to nurse her while she has blood work done, she hardly notices it except for the initial pinch. And feeling that first gentle tug after a seizure reassures me that she will come back to me, that she is not lost. It gives me a peace that could not be obtained by any other means.

Bedsharing has been invaluable. There is no way we could have known how many seizures she was actually having if she wasn't nuzzled down beside us. She always has her seizures in her sleep and now if she starts to tremble in the night or early morning hours, we cocoon around her and hold her close to us. This is such an intimate and touching time for us, I almost count it as a blessing. How many parents regularly take the time to hold their baby in between them and pray over them with every cell in their being? It's something I recommend, status epileptus or not.

She also has to have a dose of her medicine in the middle of the night and first thing in the morning. Because of bedsharing, we are able to just slip it into her mouth as she curls up close then I easily nurse her back to sleep, no worries.

Babywearing, my favorite part of natural parenting before the seizures and the most useful now. Without babywearing, my family would not have a shred of normalcy left. There are some days, actually a lot of days, where I am literally terrified to put Evie down for a nap or leave her alone. For Christmas, we bought ourselves an Ergo and that is where she spends most of her resting hours. Sometimes, while she is asleep, I am able to actually do some things to make our life a little more normal, like make dinner or do a load of laundry. I am also very timid about leaving her with someone for any period of time, extended or not. Babywearing allows me to do the things I need to do without her ever having to leave my side (or front, or back).

There have been times when Evie has had a seizure while I've been wearing her. I've noticed in these times that her seizures are not nearly as strong or as enduring. She has her seizure, comes out of it, and immediately falls asleep without crying . She also experiences shorter postictal periods if I am wearing her, meaning she recovers from her seizure faster, usually after about a 20 minute nap. Her postictal periods when I am not wearing her usually last between 45 minutes and 3 hours.

Evie had her 6 month check up this week and her pediatrician was impressed by how well she is doing. She is completely on target in her development and even advanced in her interpersonal skills, which I am sure does not surprise any of you who have met her. He explained to me that he has not really seen any babies who so frequently have seizures doing so well. She also has surprisingly healthy attachment behaviors for a child who often undergoes invasive medical procedures. She is timid of strangers, but shows no signs of mistrust or anxiety as long as mommy is around. Could it be that our natural parenting has enabled her to grow and develop on target despite her neurological issues and medication? Maybe. I'm not making any medical claims here but, it certainly has helped us to cope with and overcome the stresses that this is putting on our family and for that, I am eternally grateful.

Good News

On Wednesday, Evie had her appointment with the opthamologist. Her optic nerve and retina look clear and are in tact. This was our last test looking for TSC. And nothing! Although there is still a chance some symptoms may develop over time, things are good for now and we can breathe a little.

With Thursday came an expedited spinal tap. After the good news Wednesday, Dave and I arrived at the hospital cheery and early. Everything worked like clockwork; we got a good parking space, registration was easy, we had friendly nurses, Evelyn was unusually pleasant for not feeding her for a few hours. We had an amazing nurse who by instinct was able to hit one of her tiny, invisible veins for her IV. She went out like a lamp with her anesthesia and the doctor got a very clean sample of spinal fluid. Within 20 minutes, it was over and we were returned to our deliriously happy baby wiggling on the bed with one eye open and laughing to herself. The nurse told us that older kids who used this type of anesthesia "felt really good when waking up" i.e. she was high as a kite... and it was hilarious. The nurses and our neurologist even had a good little laugh watching her. We don't have the results yet, but we did find out that she does not have diabetes. Once again, it's looking like plain, garden variety epilepsy, which is what we want. In the words of the nurse who helped with the procedure "the last thing you want is to be interesting to a doctor". We're happy here, being normal and boring.

The only thing we are worried about is that her doctor wants to change her medicine to Topamax, which might have some not so great side effects. We have an appointment with him on Tuesday and are going to be employing the BRAND (benefits, risks, alternatives, doing nothing, and decision) questioning process we learned in childbirth classes. We also are meeting with an Epileptologist at MUSC in the next few weeks to seek a second opinion on the matter.

Since it is obvious that the seizures are not effecting her development and there is a risk that this new medicine will, we are concerned that the risks of the medicine outweigh the benefits. Especially since she only has breakthrough seizures every 10 days or so and she bounces right back from them. From the little bit of research I have done, this seems to be quite typical of epilepsy.

But for today, we are happy, we had our Saturday morning coffee jam session in bed, the four of us. Aiden and Evie giggled and played. We are in awe of the bond that they are forming; the protector and the charmer. Sometimes she's the only one who doesn't get a grumpy response from him. She loves giving him kisses and patting his fluffy hair and he turns into this gentle little softy. Oh, and she said "Mama(mamamamama...)". I don't care if she didn't mean to, I'm taking it.