The day of my first surgery . . .

I have been hesitant to tell you the story of the day I had brain surgery. . . it is a day I will never forget, but would if I could. This isn't the average surgery, its BRAIN surgery! Mine became complicated by a one in a million arterial anomaly, and quickly turned into a nine hour surgery instead of a six hour surgery. If you're a fellow zipperhead you probably have similar memories that haunt you occasionally, if you are a chiari patient pre-surgery you may not want to read this post, and if you have a "normal" brain you may find this story useless - I guess I don't really know what people will think.

Nov 17, 2004

5:00 am: It is cold and dark outside our run down, Long Island motel. I stood in the shower staring at the cobalt blue tiles covering the walls, the hot water filling the room with steam. I ran my hand down the back of my neck - it is still whole and unchanged by a surgeon's scalpel. After a long time, I left my steamy cocoon and came out into a shabby motel room where my husband and mother are waiting. I sit down on the bed and when I see myself in the mirror, for a moment, it is like looking at someone else. The mirror covered walls make it easy to see what they are doing behind me as I sit wishing time would just stop - I do not want to do this.

5:45am: We leave the security of our little motel room, and walk out into the crisp, winter air to climb in the cab. I am even more nauseous than normal, but I just keep moving.

6:00am: Caleb and I arrive in the pre-surgery registration/waiting room - this is a tiny room considering the number of surgeries performed in this huge hospital each day. We sit together, waiting for the nurse to call my name so I can change into my hospital gown and socks. Once I'm changed, and all my information is double checked, the nurse lets Caleb sit with me until my ride comes. It isn't long before Dr. Remy, one of my surgeons assistants, walks in to tell me he's ready. As we walk to the gurney I get a huge wave of fear and begin telling them, "I've changed my mind, I just want to go home . . . please don't make me do this!" Poor Caleb, he has no choice but to kiss me, tell me he loves me, and help me on the gurney. As Dr. Remy wheels me away I'm overwhelmed and begin to cry, he said, "If you weren't scared I'd be concerned - this is normal and I promise we will take very good care of you."

7:00am: I am in the operating room, doctors are attaching electrodes, someone is placing IVs in three locations, and thankfully, a nurse gives me a shot that finally makes me feel at ease. A few minutes later my anesthesiologist asks, "What music would you like to hear as you take a nap?" First, I ask for anything with Jerry Garcia, which he does not have, and my second choice is Frank Sinatra and this he has. I hear a little bit of Come Fly With Me and then I drift off to a warm, deep sleep.

At this point, I am obviously unaware of anything so, this part of the story is based on what I have been told since this day. . . After kissing me, telling me he loves me and that everything would be okay, my husband walks down the hall to the tiny, overheated room marked Surgery Waiting Room. My mother is there waiting, along with a room full of other patient's concerned family members. The surgery is supposed to take six hours, so might as well get comfortable. From what I've been told, it is overcrowded, hot, and there is one very loud family sobbing over their relative having an appendectomy. At some point they would go to eat, stretch their legs, but ultimately they would wait for nine hours to see one of my surgeons. Evidently I have a "one in a million" arterial anomaly running right through the path tmy surgeons were going to cut into my brain. Thankfully, with the use of doplar technology (which no other surgeons in the world use) they saw this anomaly, found another way to my brain malformation and literally saved my life. This is one of the rare fatal complications that are seen in this particular brain surgery.

4:00pm: At this point one of my surgeons, Dr. Paolo Bolognese, comes out to speak to my husband and mother about my surgery and complication. He tells them I am doing well, and my primary surgeon, Dr. Thomas Milhorat, will be out to speak with them as soon as he finishes closing me up. Dr. Milhorat will show them a sketch of my anomaly, tell them the surgery went as well as could be expected with a complication of that sort, and they could see me soon.

Some time that afternoon/evening: Everything is very foggy, it is hard to focus, I can hear voices, and feel severe pain. "Jennifer, you're in the recovery room. You're okay, just relax." I slip back into a hazy sleep, and pain retreats momentarily. Slowly, I become more aware of my surroundings, pain, and body. . . I can hear two, unfamiliar voices directly next to my bed, they are talking about my vitals and one of them says they are going watch me for a while. I can feel someone watching me, but when I open my eyes I cannot see her. I can see the white tile ceiling of the recovery unit, I see the tops of the curtains on each side of me, and then, my nurse's face. "Hello, how are you? How is your pain?"
Oh shit, I am in more pain than I have ever felt in my life! Damn, why did I do this? I can't focus from the pain, the sleepiness, and there is no way I can speak. "ahhh. ouhhh." My nurse responded by saying, "Do you need something for the pain? You can have something for muscle spams soon too." All I can get out was, "yes." She then shoots something into my IV, my insides get a flash of warm, and I relax a little.
Next time I wake up, I realize I'm laying on my back, and I really want to move. My head is being propped up by a metal, v-shaped wedge lined with foam, but it feels like my brain is trying to rip through the back of my skull. So, I tried to roll on my left side - this did not go well at all. The nurse standing at the foot of my bed watching me quickly stopped me and insisted on rolling me herself. As she rolls me the my left, I puke up the fluid in my stomach, feel extreme pain run through my head, and my neck spasms all at once. She gets me situated on my left side, with my knees slightly bent, and uncomfortable pump cuffs on my lower legs to prevent blood clots. Now, I can see the three or four beds between me and the unit door, I see the nurse updating my chart then observing me from the end of my bed, and I continue to drift in and out of consciousness.
Finally, I hear two familiar voices - my husband and my mom, the two people I wanted to see more than anyone in the world. As I open my eyes, I see Caleb's face . . . he looks tired, but relieved. All I can manage to say is, "it hurts, it hurts, it really hurts." He takes my hand in his, holds it tightly and says, "Dr. Milhorat said it went better than could be expected, and they could see your spinal fluid flowing again with the naked eye. You did it! It went well. I love you. We only have ten minutes now, but we'll be back at visiting hours." A minute later, he lets my mom up close to hold my hand. She kisses me gently, strokes my hand with hers, and tells me, "You're going to be okay. The surgery went well, and you're doing well. I love you, punkin." My mom very gently, strokes the little strip of hair the doctors left along my forehead, and kisses the back of my hand. Then, it is time for them to go until visiting hours in a little later. With help from the nurse, and a break to puke, I turn to my right side, push the button she gives me for my pain pump and fall back into a haze of pain and meds.
The rest of the night goes this way - in and out of consciousness, trying to communicate, and pushing my pain pump button as much as possible. At some point I noticed the recovery room- it was one big rectangular shaped room, patients lining the walls, and a long nurse's station running down the middle. There are so many patients in this room, I can't see everyone so I can't tell you how many. Some patients are sitting up talking, obviously here for an outpatient procedure, and some are moaning and unable to move, like me. About midnight I am moved to a room on the neurological floor, my vitals are checked again, and I am left alone in my dark, quiet room.

Well, that is the story of how I spent my son's second birthday. For some reason I thought that day would be hazy, or at least fade over time, but the memories from that day are quite vivid. Honestly, I've always been happy I wasn't the one in the waiting room.

Baby love

Logan and I are babysitting my nephew today. He is almost one year old, and very cute. We are really enjoying our time with him, and he adores his big cousin Logan.

There is something I have to get off my chest . . . as much as I love my sweet, little nephew, it is sometimes hard for me to be around him. I have always wanted at least two babies, and would have loved more, but so far that has not happened. I have wanted a second baby since Logan was three, but instead I've had surgeries. Seems like every time we think we're going to be medically cleared to try for a baby, something happens with my health and it is delayed. The last delay was my spinal fraction/disc herniation found in Sept. 2009, the same month my sister-n-law got pregnant.

I am very happy for people that are blessed with happy, healthy babies - it is just hard for me at times knowing that may never happen for me again. Logan has been a wonderful, amazing blessing in our lives, and I am beyond thankful for him - I just don't feel like our family is complete, I feel a strong need to me a mommy to another soul.

I still have hope, I still pray everyday. Hoping our family will be blessed once more, and feel complete. I've always wanted to be a mom, I babysat, taught swim lessons for years, life guarded at the local pool, and have always loved kids in general. So, I'll keep hoping, but for today I'll give lots of love to my handsome, little nephew.

Ten Things Tuesday: Authors Logan and I like to read

It may sound strange to include my eight year old son's favorite authors in the same group as mine, but it in Logan's case it isn't. The end of the year testing for second grade showed his reading level as MUCH higher than his grade level, and frankly, he reads as well as me. Also, I wasn't what you would call a 'reader' before Logan. . . I read to him nightly from birth, but by the time he was four we were reading books like The Chronicles of Narnia. So, for these two reasons, my ten things Tuesday list of authors will include authors I enjoy, authors Logan loves, and authors we have read together.
These are in no particular order:

1. J.K. Rowling - Harry Potter series. Logan and I read this series together over a year when he was seven. We fell in love with the world she created and these books are what finally gave me a love for reading! Child, teen, or adult, this series of books is amazing! PS. Don't judge the boooks by the movies, they're much better.

2. Rick Riordan - Percy Jackson series, Kane Chronicles series, and Lost Hero. This is one of Logan's favorite authors! He read all the Percy Jackson series last summer over two weeks, and it was hard to get him to put them down.

3. Chris Cleave - Little Bee and Incendiary. These are intense stories, but well written and beautiful. When I bought Little Bee I had no idea what to expect, and although it wasn't a light, easy read, it is a really good one. I am looking forward to reading the next book from this author.

4. Emily Giffin - Something Borrowed, Something Blue, Baby Proof, Love the One Your With, Heart of the Matter. This is one of my favorite 'chick lit' authors. When I'm looking for an easy, entertaining read this is the perfect author.

5. C.S. Lewis - The Chronicles of Narnia, series and several other titles. I have not read any of his work beyond Narnia, but these books are amazing! Logan and I read them for one of our bedtime stories when he was four and it sparked a love for reading in him. This is also a series my husband read as a child.

6. Stephanie Meyer - Twilight Series and The Host. This is a stay-at-home mother that had a dream about vampires and wolves, wrote it down, and ended up having four best-selling books published. All of her books are wonderful! The way she writes makes it hard to put down, but the books are eight-hundred pages so I had to put it down more than I liked. Again, please don't judge these books by their movies - the books are MUCH better.

7. Dalai Lama - he has authored many books, but the one I would like to mention is How to Practice: The Way to a Meaningful Life. This is an awesome book, touching on Buddhism, and focusing on just being a good person, appreciating life, living in the moment, etc. I think everyone should read this book.

8. Cornelia Funke - Dragon Rider, Inkheart, Inkspell, Inkdeath, Reckless, and several others. This author is thought of as an author for young adults, but the magical worlds she creates are entertaining to any age. Her stories carry you away on adventures to a place where books come to life, and children have the power to save the day. Right now Logan is reading Dragon Rider and loves her style of writing. This is another good author for fun, entertaining bedtime stories.

9. Carl Hiaasen - Skinny Dip, Strip Tease, Lucky You, Tourist Season, and several more titles written for adults in the satirical mystery genre. He also writes youth mysteries - Hoot, Scat, and Flush. All his books take place in Florida or off the coast, and really make you feel like you're right there with the characters.

10. Christopher Paolini - The Inheritance series. This is the series of books Logan and I are currently reading together. We are reading Eragon now, and it is a very good read. . . this author weaves a detailed world that draws you in and makes you want to root for the lead character. So far we have really enjoyed the story!

Well, that's my list! There are other authors we enjoy, but these are our favorites. If you haven't read some of these authors you should find them next time you head to the library. If you have any great author recommendations for Logan or myself please leave a comment or email. . . I am looking for a good summer read now and Logan is looking for a good book every other week!

Bee Free

Well, so much for my goal of posting everyday. The past few days have been busy, but that's not why I haven't posted. . . it has been raining here for the last four days, so my head pressure has been higher than usual and my head pain has been worse. I've used every extra minute to relax my neck, lay down on my left side and give my head a chance to feel better - unfortunately its hard to type a blog laying in fetal position on the couch.

Its getting late, but I want to tell you about a great little bakery with gluten free goodies. Logan Street Bakery, in Noblesville, IN sells goodies made by Bee Free Bakery - gluten free baked treats that actually taste like treats! The owner/founder is a friend of mine and the mother of a boy with Asperger Syndrome which is on the Autism spectrum. Several years ago she found eating gluten free profoundly changed his ability to focus, and seemed to make processing stimulation easier. The big problem was finding food that tasted good, and was gluten free. . . after trying many brands and products she decided to start making her own treats. With family tested/approved recipes she started her own bakery making gluten free cookies, cakes, pizza dough, other yummy items, and her own Bee Free flour mix so you can bake at home. Her products are sold at Logan Street Bakery, Green B.E.A.N. delivery and several other locations in the Indianapolis area, which can be found on the website: www.beefreegf.com.

Over the past year I have been dealing with painful, swollen joints - one of the things that can be helpful is eating an "anti-inflammatory diet". This means lots of veggies, lots of fruit, limited fats, limited processed foods, and limited gluten. I was surprised to find a low gluten diet would benefit me too. So, before you think you would have no need for this special little bakery, maybe you should try the yummy the treats or see how eating less gluten could benefit you!

A day in the sun

Today was one of those almost perfect days - one that I hope to have many more of this summer. Logan and I were lazy most of the morning, playing cards and watching cartoons. After lunch we met one of my closest friends, Angie, and headed to my dad's for an afternoon on the lake. The weather was not too hot, but warm enough to swim and play in the water. We loaded the cooler, put on our sunscreen and stopped by my uncle's dock to pick him up. Then, we took a nice cruise to show Angie part of the lake, and beached the boat on a small island for Logan and Gordon to play.

I think I've mentioned my dad and uncle were stay-at-home dads, so we have spent a lot of time together my entire life. Now they are both mostly retired and I love being able to spend time with them on a regular basis - its no secret I'm a daddy's girl and my uncle has always been like a second dad. We have a lot of fun together, Logan loves spending time with both of them, and we have made so many amazing memories over the years. I cannot imagine what life will be without the three of them to laugh with, swim with, or just hanging out in the summer sun and be silly. We're kindred spirits, my dad, my son, my uncle, my cousin, and me - we love our summers, we love our lake, we love our time together.

My life is hard. . . it is filled with pain, nausea, vomiting, joint pain year round, but in the heat of the sun I feel a little better. In the summer I feel a little less miserable, and I feel blessed to be able to take advantage of that time with some of the people that mean the most to me in life. I've always said that I have plenty of reasons to be thankful - these people, these memories, these almost perfect days top that list.

Have you seen my shoe?

Okay, confession time - I have been making beautiful scarves, and several people have wanted to wear or buy them. I want to start an ETSY page, sell them in a boutique somewhere, or start dyeing dresses, but with my health I worry that it will all fall apart again.

I feel like I'm constantly waiting for the other shoe to drop. Throughout my youth I had many medical problems, and several symptoms including pain, but I still worked, played, and was very active. It was after I had started building a massage business, gotten married, and had a one year old that my symptoms became so severe I needed brain surgery. I had a wonderful husband, beautiful son, a home of our own, a blossoming business, and our friends/families around us all the time. . . literally everything I had ever wanted. Obviously having lots of money, or a house on the lake would have been nice, but I had everything I REALLY wanted. I was a massage therapist working with chronic pain patients, I know it's ironic, I scheduled sessions around my family and was able to stay home with Logan when my husband worked. We had just built a house in a town close to our families and Logan had just turned one...then, it all stopped. My pain level skyrocketed, my stomach stopped digesting food, and all my other symptoms went crazy.

Most mother's spend their child's second birthday celebrating, I spent Logan's having brain surgery in NY. (I'll tell you the story of that day in tomorrow's post.) My recovery was long, and hard. I wasn't allowed to be alone with Logan for three months, no diaper changes, no holding him - just snuggles, no bathing him, and it definitely took its toll on my heart. No riding in a car for three months, unless it was for an doctor's appointment, and then everything was extremely limited for three more months after that. I felt pretty good for several months, then my symptoms flared again. Eighteen months after my first surgery I was back in NY for number two, a cranio-cervical fusion. A similar story between surgery number two and three - sixteen months between my fusion and spinal cord detether/discectomy. I made it a whole two years and one month between my third and fourth major surgeries. So far it has been nineteen months since my lumbar fusion/discectomy in December 2009, and there are no surgeries on the horizon. . . At this point I'm knocking on wood, and keeping my fingers crossed.

Unfortunately, it seems like every time I get into a good routine, or start to move forward with my life my symptoms flare, and it all stops again. I'm afraid when I start to really put my heart into this idea, the other shoe will drop and I'll be stuck feeling miserable with scarf orders to fill and a family that needs me. I want this - I have dreamed of turning my creativity into a way to help support my family. Massage therapy is never going to be an option for me again, and working in a conventional setting is difficult when you don't know what days you'll be puking, or in severe pain. There is a reason I've been legally disabled since May 2004, and none of my doctors expect my situation to change - ever. So, this plan makes sense to me. . . I can sit on the couch to tie the scarves, and the dyeing can be done when I am physically able. It sounds like a good plan, but so did my massage therapy business. I'm scared, frustrated, and unsure what to do next.

As usual, I am trying to stay optimistic. I have been able to stay off twenty-four narcotic coverage for three months, and have had reasonable pain control so far.. . my pain level on a scale of one to ten is never a zero, but on a good day is between a one and three. There haven't been any hospital visits due to pain yet, so I'd say it is going well. I use physical therapy, ice, TENS unit, Theracane, meditation, yoga, and meds to keep my symptoms from being out of control, but nothing makes me feel free of pain. What do you do when all you want is a "normal" life, but your body won't allow it? How do you plan the next day, let alone a new business? I don't know what to do, think, or feel. I just want to be able to move forward and not worry that tomorrow I'll be in so much pain I can't even think straight. This is my life, I'm accepting that, but I don't want to feel trapped by my disorders - unable to do anything outside of caring for myself and waiting for the next flare up. (Big sigh.)

So, now that you know my little secret and I've allowed a little time to wallow in self-pity, it is time to stop whining and focus. Its time to decide how to move forward from here and what is the best path - do I proceed with Threads To Dye For, or just make scarves as gifts and for fun? What will benefit my family most, what will make me happy long term? These are the questions I have to ask myself, these are the questions I have been asking myself. . . I think I know the answers, but a little extra thought won't hurt. Hopefully you'll keep reading my blog to see what happens next!

Please, feel free to email me anytime with questions, concerns, or opinions at Zipperhead1978@gmail.com. Obviously I'm not shy about my medical situation, so don't hesitate to ask anything related to any of my disorders or surgeries. Knowledge is key, and over the years I've gained a lot of it when it comes to my medical issues.

Ten Things Tuesday

Recently I have been reading several other blogs on a regular basis. One of the regular posts I always enjoy is 'Ten Things Tuesday', so I decided to give it a try myself. I hope you enjoy. . .

This is my very first Ten Things Tuesday list so, instead of picking one topic to write about, I'm going to tell you ten things you may or may not know about me.
1. Some of my favorite things are: chocolate, snuggling with my son to watch a movie, my pooch, potatoes, diet coke, green tea, my lake, my family, swimming in the summer sun, my friends, being crafty, tie dyeing, live music, yummy food, reading a good book, camping, hiking trails, and laughing as much as possible.
2. Our pooch, Gordon, is a BIG part of our family life. After our German Shepherd died, I found Gordon at a local Humane Society. He was just a puppy, the last of his litter, and was scheduled to go to a rescue group the very afternoon I adopted him. A little, white pup with tan spots on his right shoulder, and ear - he was adorable. I was just six weeks post-op from spinal cord detether/discectomy, so my uncle drove Logan and I to get Gordon. Of course we all fell in love with him at first sight, and he has been spoiled rotten from that moment on. You will see him in my posts, he travels with us a lot, boats with us always, and is generally in the middle of whatever we're doing. He has been an amazing addition to our family, and I encourage everyone to adopt or rescue a dog instead of buying one from a pet store or breeder.
3. I love to watch cartoons with Logan! I love all the Marvel movies - Ironman, Hulk, X-men, all of them. We spend more time than we should watching cartoons and movies, but it is something for us to enjoy together even on my worst days. I don't think it has be harmful to him, but it isn't something that I think is good for him either. Right now we are watching the Avatar series, its a great if you haven't seen it, and we both really like this time we spend together being lazy on the couch.
4. About a year ago a friend talked me into reading the Twilight series. . . I had said I would never read this series of books, but once I started the first one I was hooked! Some of my other favorite books are: Harry Potter series, books by Emily Giffin, Meditation as Medicine, The Host. If you have any recommendations please let me know - I'm always looking for a good read, especially in the summer.
5. All the artwork in our house is either framed Logan art, or framed concert posters. When my husband and I travel it is often to see live music, generally Phish. We have started a collection of signed, numbered concert artwork and love displaying it in our home. I also love showing off Logan's artistic ability by framing his artwork - I'm getting ready to frame his second grade artwork and using it to decorate our bedroom. I also am working on a wall of black and white photos of our grandparents and great-grandparents. I am trying to surround myself with things that have meaning in my life and let go of the rest.
6. Good music is something that brings a smile to my face. I enjoy most types of music, and honestly feel that music makes the soundtrack to our lives . . . how many memories of yours are connected to a song, or album. My childhood was accompanied by the Beach Boys, Neil Diamond, Buddy Holly, and many of the 'golden oldies'. During my early teen years I listened to Elvis, Bon Jovi, Snoop Dog, Counting Crows, Led Zeppelin, Bob Marley . . . until I found the Grateful Dead. At that point I found a whole new world of music: Jerry Garcia, Miles Davie, Davis Grisman, The Band, CCR, Buddy Guy, Clapton, and so many other artists the list could go on forever. Now that I'm all grown up I still enjoy a lot of the same music, but have added Jack Johnson, Talking Heads, Phish, Adele, Nora Jones, Jonny Cash. After my first Phish show I was hooked! The music, the light show, the energy of the crowd, and the people watching. Now we try to see them a couple times a year and we listen to great music everyday - Logan loves music, and he has grown up listening to all types: blues, jazz, jam, classical, oldies, rock. Music makes up the soundtrack to our lives - what does yours sound like?
7. I'm a pretty crafty girl. I like to scrapbook, photography, make mosaics, sew, tie dye, or anything else that sounds fun to create. I've made blankets for many of my friends babies, each one designed special for each baby, and for a dinosaur blanket for Logan. I love to design something and then create it! My most recent creations have been hand dyeing scarves - they are tie dyed technically, but not with lots of colors, just different shades of one color. It has been so much fun to draw a design for a scarf and then actually have it in my hands hours later! We will see what happens with my scarves - I'm in the process of starting an ETSY page, but need have a wholesale source, and a business name first. I'm thinking, Threads To Dye For. What do you think?
8. I don't know about you, but I've turned into a bit of a reality TV junky. The Real Housewives shows and the Kardashian's array of shows are my favorites. I'm the first to admit it is mindless, pointless TV, but sometimes that's exactly what I need.
9. I would probably be classified as 'all natural'. . . I don't wear makeup, trendy clothes, or high heel shoes. Don't get me wrong - I think other woman look good in all of those things, its just not for me. I like to be comfortable, and wear things that make me feel good, whats "in" doesn't really concern me. I'm not saying I'm a 'natural beauty' or anything, but I am comfortable in my own skin.
10. This blog has gone from a little way for me to write down a few of my thoughts and feelings, to something that I look forward to writing. I'm trying to write everyday, and I hope you enjoy what I have to say. Those of you that know me know that I am extremely extroverted and would talk to just about anyone about anything. So, I am going to set the goal of writing a post everyday, and hopefully you all won't get bored by what I have to say!

Well, that's it. My very first Ten on Tuesday blog! Hope you enjoyed finding our a little more about me. . . Next week I'll try to be a little less self-absorbed and find a topic that isn't based solely on myself;)
Have a great day, and, as usual, I hope you can find a reason to smile!

Why the big secret?

Before Logan was born I was a nanny for four beautiful boys. I took care of them for about two and half years. . . my first day the boys were 6wks, 18mos, 3yrs, and 4yrs old. Caleb and I were married on this family's property - four acres sitting on the lake where I have boated my entire life, it was an outside wedding under a big white tent, overlooking my lake. We had a dance floor, a good DJ, yummy food, and most of the people we love. It was the perfect ending when we left by boat, my uncle's Baja, with tail pipes set to rumble and "just married" sign on the back. Much of that day was a gift from this wonderful family. My last day I was having contractions all day, twenty minutes apart and Logan was born two days later. I thought my experiences with my boys and their parents had prepared me completely for being a mother of a new baby, and had given me a preview into day to day married life. . . it makes me laugh to think I truly believed that once upon a time.
Our nine year anniversary is the end of this month. Wow, we were so young when we got married - twenty-two and twenty-three at the time. Its funny how the view changes, I vividly remember during that time thinking the exact opposite - "We're not too young to get married. We're adults, supporting ourselves in this world and we're ready." In the spirit of totally honesty - we had been together for three years and we were given the miraculous surprise of Logan. I had been told I would not be able to have children, so he has been and always will be the biggest blessing of our lives. We had decided we were going to be married, Logan just upped the time frame.
People tell you marriage is hard, "it takes work". And they're right it does, but most things worth having take work. . . No one is perfect, and no one can be calm, cool, and collected all the time so, there are disagreements, and yes there are moments you may not like each other, but at the end of the day this is your partner in life. I love my husband - I love him for being my friend, lover, biggest fan, and for always wanting only the best for me and our son. He was twenty four when I had my brain surgery, and he was supportive, kind, and strong. Not all twenty four year olds could handle something like that, with a two year old and work also depending on him. He would never admit that he did anything special, but to me he has always been my strength and my protector. I believe that all this has made us stronger, I hope I'm right;)
About a month after Logan was born I started to wonder why no mother ever talks about this time. . . the time period when being a mother is much harder than you ever dreamed. No sleep, feedings every two hours (yes, I breastfed Logan until he was 1yr), the baby cries - but you don't know why, and the world just keeps on moving without you for the first time in your life. You only know what I'm talking about if you've had a baby, there is no other way to understand that first three months.
So, what's the big secret? Why not just be honest? Why not tell every mother out there that the first three months is REALLY hard? I remember feeling like I must not be doing something right, because sometimes he would just cry and I couldn't figure out how to help him. No one told me that sometimes- especially in the beginning when the baby is recovering from birth - babies cry just because! It doesn't make you a bad mother if your baby doesn't come out of the womb eating, sleeping, and cooing "like a baby." Even with my time as a nanny for an infant, and three young boys I didn't know what was coming my way. I loved those first months- the new sounds, smells, and feelings of being a new family, watching the person you created seeing the world for the first time, or just holding him for hours dreaming of our lives together. However, those first weeks were sleep deprived, emotional, isolated, and difficult. . . I felt lonely, frustrated, and tired.
I was dumbfounded as to why no one had ever talked about this part of early parenthood, why all the secrecy? I actually asked the mom of the boys I cared for and she said she didn't really know why mothers don't share these experiences openly, but everything I was going through was "normal". There was one baby book she gave me explaining why babies cry, how to identify different cries, and what to do about them. Then, it tells you sometimes they cry because they were in a warm, soft, quiet place before we plunged them into this bright, loud, cold world and they're not very happy to be here. This book was enlightening!
I think most mommies want to appear to be perfect, beautiful, and under control at all times . . . if you have a child you know that is an unattainable goal! So, we should all be honest with each other - stop trying to appear perfect for the world and start sharing all your little secrets: Logan cried a lot as a newborn, ate every other hour, and was NOT a good sleeper; Caleb and I fight sometimes, we get on each others nerves, and at times he drives me crazy; my house is so unorganized it irritates myself and my husband but still I can't seem to get it under control; Logan is probably the smartest kid I know, but he doesn't remember basic day to day things and sometimes he talks in gibberish. These aren't huge revelations or anything, but its a start. It is normal for mommies to have imperfections, it is normal for us to have needs, and it is okay to let the world see that.
Accept help, ask for advice, and share your worries - I promise it feels good, and there is a reason for the saying, "two heads are better than one." Think of your friends and family as guides to help you on your journey through life, we all have our own experiences and have something to offer each other.
So, no more secrets, no more false perfection, time to be honest with yourself, your family, and your best friends. If you want to share any of your mommy worries feel free to leave a comment:)

The teachers let the monkeys out!

Summer break is finally here and Logan is all mine once again! We're going to swim, play, read, and have adventures together. I truly appreciate that in years to come, not far from now, he won't be interested in spending his summer days hanging out with his mom. It is a gift and a curse all at once to be so aware of the fact that some of my favorite moments in time are growing fewer and fewer. . . my time with my dad is SO precious to me, and my time with my son while he is still my little boy, before life has touched him with bills, worry, or responsibilities. I am in the middle of some of the best times in my life and I just don't want it to change.
I understand that there are joys with every age: the joy of watching your baby grow into someone that contributes to the world, the pride in seeing person you helped create mature into a loving, intelligent adult, the freedom to concentrate on myself, the ability to spend more time to my husband and I would never overlook the love of grandchildren. Unfortunately, those things don't seem to outweigh the fact that right now I can walk into Logan's room at night just to see his face, or snuggle up with him at any moment. I can call my dad any day of the week to meet him for lunch, call him at any time to ask for advice, or just go hang out with him because I want to. I can't work, I have friends, but my relationships with my husband, son, mother, and father are definitely the closest to my heart.
Don't make the mistake of thinking I have no interests beyond my son and my parents . . . just last weekend my husband, several friends, and I took a roadtrip to see Phish play two nights in a row. I love to spend time with my husband, we have date nights, take trips together and spend a lot of time hanging out as a family. I have amazing friends I love and depend on. There are many things I am interested in including reading, crafts, boating, travel, music, but all of those are secondary to my love of being a mother and my love for my family. I will always find a way to pass the time, but its hard to believe anything will compare to right now.
This is a summer I will hold close to my heart, this is a time I will always remember - my son is with me all the time and making memories with my dad he will have for the rest of his life. My father is seventy-three years old, Logan's other grandparents are all in their fifties. . . yes, if you do the math my mom is fourteen years younger than my dad;) Logan is old enough to remember these adventures with my dad - I have memories of my time with my grandfather Beem, when I was a little younger than Logan, and they are memories that I cherish to this day. So, it means more to me than most to be able to give that to Logan - time with his grandfather while he's healthy and able to just play.
I hope you have something in your life that makes you appreciate the moment you're in. I hope you have someone you love to spend your time with making memories to hold close to your heart forever! Have a great day, and remember to find a reason to smile:)

Medical update

I posted recently about some doctor drama I was having, so here's your update: After leaving one doctor due to some very sketchy behavior, and finding another I really liked that abruptly moved to New Jersey, I was set up with a local neurosurgeon that works with Chiari patients.
My appointment was good - he was nice, and very knowledgeable. He looked at my most recent scans, did a neurological exam, and talked to me for over twenty minutes. I'm still not sure I would classify it as 'good' news... he said he didn't see any reason for another surgery any time soon, but he also doesn't see me getting any better- ever. He also informed me that the fluid filled area at the base of my head between my brain and skull will never go away or dissipate. Which means, this is my life, forever. I have some control with physical therapy, TENS unit, meditation, and a few other things I have found that take the edge off, but nothing that is going to make me feel truly good. So, as happy as I am to hear that I am stable, and don't need any major treatments, it is hard to hear there is nothing else they can do to lessen my symptoms. I have always held out hope that something will become available that would erase all the pain and symptoms I deal with every second of everyday, but the consensus is I shouldn't hold my breathe... this is it for me.
I know, I know, my life is pretty good. I appreciate my son, my husband, friends and family, but this is the thorn in the side of my optimism - I want to get better! I want to function somewhat normally, I want to work, I want to feel good, I want to have one more baby. These thoughts keep running through my head, I really can't help it sometimes, even though I know I have so much to be thankful for. So, I'm going to give myself a few minutes each day to mourn the life I really want, to get mad that I will never know a "normal" life, and allow myself to be angry that I will be in pain for the next fifty plus years. Then, its time to let go of those feelings and remember how great my life can be when I try to be happy. Being happy really is a decision, a choice you have to make everyday. Life will always hand you reasons to be stressed, but it rarely shows you the way to happiness.
I still have to find the neurologist and rheumatologist I want to work with, but I'll get there when I'm ready. After being with the same neuro/pain specialist for seven years and having it end the way it did just made me a little leery of new doctors. I promise I'll get there, but I'm in no hurry.
So, I'm in pain, nauseous, exhausted, and my joints are swollen (among many other symptoms). Each day is hard. Every morning I wake up, before I even open my eyes the very first thing I feel is pain, and I wonder how I'm ever going to make it through the day. Logan is a great motivator, but its still hard to force myself to move. . . every time I move it takes effort, it hurts, its exhausting. I've learned how to hide it most of the time, mostly when I'm around anyone outside of my husband, son, mom, and dad. Its hard for them, its hard for me, its just too damn hard to imagine this is how it will be for the rest of my days. By the way, I'm thirty two years old, and I've had this pain in my head every second since I was twelve. When I think about it now I wonder how I did it - growing up with constant pain and suffering. Somehow I still found a way to play hard! I grew up riding wave runners, swimming on competitive teams, boating, hanging out with my friends, traveling with my family, and having an all around great life. I've always been able to move through the pain, but as I get older it just gets harder. I wish I still had that never ending energy of childhood, it certainly made getting through the day with pain easier.
I know its hard for most of you to imagine feeling pain of any kind constantly, but sometimes my head hurts so bad I can't even think or talk normally. I don't want you to feel sorry for me, I don't want your pity... I do want you to think of me when someone at work irritates you, think of me when you are on your last nerve with children thinking "there is nothing more stressful than this", or when your cleaning your house dreaming of all the other things you'd rather be doing. Someone out there is praying to be able to do all those things, someone out there is wishing they could just function enough to do the basics of life. Someone out there is missing their child, someone out there is unable to find a job, and God willing that someone will never be you.
As usual the moral of the story is: we all have plenty of reasons to feel stuck, we all have some form of stress, but can you find a way to focus on the best parts of yourself and the world around you?
"The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly." Buddha