Wednesday, January 26, 2011

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.

4 comments:

  1. Awesome post. You should submit your work to a magazine or something with a wider audience. Information like this could help other families with special needs babies!

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  2. I agree with Jenny! How amazing would it be for you to be able to turn all this into something positive! There are too many parents and sweet babies who could benefit from this healing perspective of attachment parenting.

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  3. This is beautiful. I just love how you describe your bond with your baby, and how much natural parenting has helped amidst all the chaos of health issues.

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  4. Every blog I read today is making me cry!! I'm so glad to hear more about the struggles you guys are going through. It doesn't cross a momma's mind (at least not this momma-to-be!!) when she's pregnant that her baby will be anything other than completely healthy. Eve showed no symptoms until months after birth, and I know it rocked your world. Sharing this helps me to keep things in perspective, but also gives me hope that the things I plan on doing with my baby are good for him or her! Insticts usually aren't wrong, and my instinct is to be with my baby as much as possible! I agree with Jenny! Send this to parenting magazine or the like and try to share it with as many as possible! What valuable information!!

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