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Today marks one year since Amalea had her first seizure. I call that night the worst night of my life (I posted about it here) and one year later I still consider that to be true. Even though she has had 2 more seizures that first one – one year ago today – will forever be etched in my memory. I was reading my post about it and realized how I still remember every little detail from that night. My dad standing in the kitchen holding Maya, my mom standing in the street waiting for help, Jim cradling Amalea as she seized, me clutching the phone frantically talking to the 911 operator hoping that my water would not break. All of us worried and panicked and so so scared.
Every time I see an ambulance with it’s lights on, my stomach drops. I know that feeling of waiting for help to arrive. I’ve waited 3 times.
Today is not a one year anniversary I am particularly happy to “celebrate” and yet it is a day that is significant for our family. We still have so many questions and there may not ever be answers (I heard that 70% of the time you never know what causes seizures). The thing is, this fear about Amalea’s health did not start just one year ago. Her journey and special health needs actually started when she was just 2 weeks old.
When Amalea was just 2 weeks old her pediatrician found that a light did not reflect when shined in her eye as it should. They sent us the next day to the hospital for a CT scan as it was possible that she had a brain tumor. I will forever remember that 30 minute drive on a Saturday morning (my 26th birthday – October 20) to the hospital as I sat next to my beautiful 2 week old baby. I was so scared and confused. My body was still a wreck from her traumatic birth and now there was a possibility that she had a tumor. Luckily, the scan was clear. Further testing showed that she had a retinal hemorrhage and that hemorrhage was removed through surgery when she was 6 weeks old. I will forever remember sitting in her hospital room as they wheeled my 6 week baby away to put her under full anesthesia. Then we sat and waited – waited for her to return, waited to hear how it went, waited to hold our precious baby girl.
I share all of that to say that Amalea has had quite a journey in her 5.5 years of life. There are scary moments that I will forever remember, but they are all moments that we have come through. That she has come through. She is resilient and truly if you didn’t know this part of her story you may never know she has seizures or that she is blind in her left eye. I am so thankful for that. I am thankful that she won’t remember a lot of the scary parts of her journey. They are more of a burden for Jim and I to bare at this point. And that is ok. She doesn’t need to deal with all these scary realities yet – she just needs to play and be free and fall more in love with life. That is her job for now. It is our job to research medicine and treatments and determine what is best for her. We are her parents and we will do everything we can for our sweet Amalea.
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It’s been a crazy year. We are all exhausted. Like, really, really exhausted. And yet, we have so much hope. We are hopeful that Olivia will sleep through the night one day. We are hopeful that Amalea will grow out of her epilepsy and never have a seizure again. We are excited for our upcoming move to Portland and all that this move means for our family. There is so much that we have to look forward to. Life is full of amazing experiences. A friend recently suggested I sit down and make a list of things I want to experience in life – not things I want to achieve, but things I want to experience.
So, here is my list as of today (it is not finished, I’m just getting started):
- Serving the oppressed/poor
- Seeing my girls serve and love others
- A tropical vacation with my family
- Visiting Japan
- Teaching middle school again
- Travel to and work in less developed nations
- Family vacation to Disney
I guess it’s pretty obvious from this list that I am fulfilled by service and adventure. Everything on my list falls in to those two categories. I want to see the world. I want to show my girls the world and not just the beautiful, tropical, exotic, lavish world, but the poor, oppressed world. I want them to know that their reality is not the norm. I want this realization to tug on their heart strings as it does on mine and I want them to feel called to take action against injustice. I want to experience all this world has to offer and I want to do that with my family.
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Today is a new day and today I am making some big commitments – to my daughters, to my husband and to myself.
Let my start by being totally real and honest – I’ve been a bitch. I’ve been angry and impatient and I’ve raised my voice more times than I would like. I have allowed myself to show my frustration and annoyance to my kids and this will have big consequences. They will grow up thinking they are annoying or that their energy and charisma is too much. But it is not. It is beautiful and the silliness and quirkiness that they have is them being free. Children have this beautiful sense of freedom and they lose that when adults tell them to tone it down. My kids are slowly loosing that freedom because of me. And it sucks. I suck. My marriage is suffering because I cause my husband to walk on egg shells since he never knows what mood I will be in. I tell him I want to give him break since he works so hard, but then I make him feel guilty. I take everything out on my husband. I don’t lift him up and love him the best that I can. I allow him to be last way too often – I put myself before him. It needs to stop.
I feel broken. Like all of a sudden my eyes have been opened. I am sad. With these new eyes come awareness of how awful I have been. I can blame it on so many things, but really the blame lies solely on me. I have made choices to allow my anger to win. I see that now and I so desperately want to change – for my daughters, my husband, and myself.
I didn’t plan on blogging any of this until I sat at my computer and went on facebook. I saw a post from Chasing Rainbows, a mom who just lost her 5 1/2 year old son and then I read about the events at the Boston Marathon yesterday and then I saw a post from The Orange Rhino, a mom who set out to stop yelling at her children and it all hit me. I had to write.
I want to publicly (well at least to the small handful of you who actually read my blog) make these commitments because I need help. I cannot love my daughters and my husband better on my own. I need people to ask me how I am doing with not yelling. I give any of you reading this permission to ask – any time. Text me, facebook me, email me. Hold me accountable to be better. Please. For my daughters, for my husband and for myself.
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In light of my last “heavy” post I decided to post something a little lighter today. You’re welcome.
Reading: I recently picked up the book Go Ask Alice at a used book sale. Woah. While I have heard crazy stories of people’s experiences with drugs I was not prepared to read this tale of a 15 year old girls battle with drug addiction. It scared the shit of me. I have always said that I will support my kids no matter what choices they make, but that I pray desperately they don’t get involved with drugs. They scare me. This book was a harrowing tale of how awful addiction is and how hard it is to get out of it. It was eye opening to the meanness of teenagers and how manipulative and conniving they can be. I finished this book with a broken heart.
Watching: Jim got hooked on The Mentalist and I soon joined him. It’s a fun police detective drama, but with a twist since the main character is a mentalist. I love the main character’s personality.
Listening to: I’m hooked on Walk Off the Earth right now. Their songs are so fun and the girls love to dance along. I definitely am not a huge music person, but when I find something I like, I really like it. I love upbeat music that makes me want to dance and this definitely does that for me!
Preparing for: We will be moving in July back to our house in Portland, OR. Since we lived in that house for two years already, we move with so many plans and ideas of what we want to do. We want to build a back deck with a place to hang swings. I want to hang flower pots along the back fence. We want to build a home office detached from the house. I want to change out the towel rods for hooks. I want to add shelves to the downstairs bathroom. I want to create the perfect play room, art room, homework room for the kids. We want to get some new furniture. It is all very exciting and it has been fun to gather ideas and to make plans for the next steps with our home.
Loving: Zumba! Before getting pregnant with Olivia I did Zumba and loved it. I just started trying to go to gym again in hopes of losing the last bit of my baby body. (now, I of course know that my body will never be the same as it was pre carrying 3 children, but I still hope to be healthy and fit in the body I have). I started Zumba again last week and was reminded how much I enjoy it. I love to dance (though I have NO rhythm) and being able to exercise while doing something I enjoy is just fun. I often find myself laughing out loud at Zumba as I do the moves totally wrong or trip over my own feet, and yet I still love it.
Thank you to Danielle for the inspiration for this post.
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How are you…it’s such a simple question and yet sometimes the answer to the question is anything but simple. Sometimes I just hope nobody asks. I don’t want to lie, but I cannot bear to be honest about how I am – sometimes the truth is not pretty. I am an introvert and sometimes I really don’t feel like talking so even if the answer is positive, I just don’t feel like sharing. And yet sometimes I just hope somebody asks because I desperately need to talk.
That’s what I’ve been feeling this week. I need to talk. I need someone to ask me. But, the truth is that I am a work-from-home mom who doesn’t interact often with other adults and when I do it is in passing during school pick-up and drop-off. Yeah, not exactly the time to bear your soul to someone. And so, I sit here trying to mull through how I am on my own.
- I am scared. I am scared for Amalea to have another seizure. I am scared that the medicine will harm her. I am scared that I cannot protect her.
- I am sad. Amalea just had a realization of what it means that she is blind in her left eye – she realized that is not “normal” and she broke down. She cried, she said she wanted to be just like us. I am sad for her as she has to wrap her brain around the fact that this is her normal and while it is not something that most people would ever even notice, it is her truth and her reality and she has to mourn it.
- I am exhausted. Olivia, who is 10 months old, still doesn’t sleep well. She wakes up 3-6 times a night in need of something. Sometimes she is up for 1-3 hours. We are all very tired.
- I am overwhelmed. Maya, who is 3.5, has a very passionate personality. I don’t know how to handle her temper and sometimes I am not the mother I hope to be to her. I allow myself to get angry with her and this disappoints me. I need to be better.
- I am confused. I enjoy teaching and am thankful for the chance to teach online classes so I can stay home, but I am also tired and overwhelmed and sad and scared and teaching a class feels like it might put me over the edge. But, I love to teach. I am left unsure of whether or not I should continue.
- I am anxious. We are moving in 3 months and while I am excited to return to Portland I am anxious. I have grown to love my daily routine here and I will miss it. I don’t want to find new activities for the kids, I don’t want to have to meet new parents at schools, I don’t want to make new friends again, I don’t want to find new doctors. I am just anxious about the change coming.
I realize all of these things are negative and I don’t mean to be that way. It’s just that is how I am right now. But, I am also good. I am also joyful and excited. It’s just the hard emotions are weighing heavier today. It’s that roller coaster of life and today, in this moment, this is where I am. The beauty of life is that things shift and moments change and I can quickly find myself riding carefree in the wind again with a giant smile on my face. I know that moment will come so even in the midst of feeling scared and sad and exhausted and overwhelmed and confused and anxious I look forward with a positive outlook.
And don’t be afraid to ask me how I am. Sometimes, I really need someone to ask. And yes, sometimes I just want to be an introvert – so don’t be offended if my answer is “I’m alright” and that is all I offer. I understand moments shift and tonight I needed to answer, but tomorrow I may need quiet.
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It’s been awhile since I blogged. There has honestly just been a lot going on and I haven’t been able to make the time and space to process a lot of it. But, today I need to process.
My daughter had another grand-mal seizure a week ago. This was her third large seizure (its possible she has had smaller ones along the way as well). After her second seizure, which was in August, we got referred to a pediatric neurologist at Stanford. He said that after 2 seizures we could use the label epileptic and recommended starting her on medication. We choose not to embrace either of those things at that time. Maybe we were naive, but we really just hoped she would not have another seizure.
And then last weekend about 10-15 minutes after going to bed I heard Amalea gasp for breath and I knew. I knew she was seizing again. It was another grand-mal. Another 911 call, firetrucks, ambulance, fear, confusion. My daughter was gone for 6 minutes. When someone seizes its as if you lose them for that time. I won’t describe in detail what happens, but I will tell you that it is awful. It is the worst thing you could ever watch. Your child, unresponsive – gone. All you can do is wait and talk to her, tell her you are there. She came out of this seizure on her own after about 6 minutes. We took her to the ER, my husband riding on the gurney in the ambulance with her holding her scared little 5 year old body. I followed about 45 minutes later when my mom was able to come over and stay with the other kids.
And now, we begin a new journey. A new battle. My beautiful Amalea has epilepsy. She is 5 years old. She is in Kindergarten and doing advanced math and reading for her age. She makes friends everywhere she goes. She has the most contagious laugh. She is a natural leader and her teacher often turns to her for help at school. She is a big sister with two sisters that absolutely adore her. She wears adorable glasses to protect her right eye as she is blind in her left eye. She had surgery as a 6 week old baby and see’s specialists for her eyes and now also sees specialists for her brain. She is fighting a big battle. But, you would never know it. She lives her life so carefree and so in love with the world. She asks amazing questions about love and God and people. She would do just about anything for those she loves.
We don’t know yet how the medication will effect her, but we hope it won’t. We hope it will keep her from having another seizure. We hope to never lose our daughter again to a seizure. We are researching, we are reading, we are reaching out and embracing this world of epilepsy because we love her and we want to support her.
Amalea at the ER
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I wanted to share our Christmas card and letter with all you in the blog world. I see these letters and photos being a yearly update so enjoy hearing about our 2012. A huge thank you to Erica from Aim and Arrow Photographers for the photos and Andy Richards for the great card design. I have some very talented friends.
Dear family and friends,
People always tell us to treasure the moments because time goes so fast and we are really feeling that this year. All of a sudden we have two young girls and a new baby and we often find ourselves just staring at them in awe. While raising kids and working to support our family can certainly be challenging, it is so incredibly rewarding. We are so thankful for these three little lives that have been entrusted to us.
Jim: Jim is working hard to learn more and more about the ever-changing world of technology. He can now create iphone apps, but still spends most of his time coding websites. Which means he stares at a computer screen that makes absolutely no sense to anyone else, but when he finishes it translates into a beautiful and functioning website. He plays hard with the girls and every day they count down the minutes until he comes home from work.
Robin: Robin left her position running a tutoring company so that she could manage a home with three kids. However, she just couldn’t say no to the opportunity to teach again so she is teaching an 11th grade English class online. Most of her days are spent taking care of the kids and the house, but often times she finds herself in some imaginary world the girls have created.
Amalea: Amalea started Kindergarten in September and turned 5 in October. We have been blown away by the person she is growing into. She truly cares deeply for others and wants to make those around her happy. Academically, Amalea shines and is a top student in her class. She loves to read and write. She enjoys dancing and being silly and we hope that she never lets go of that quirky side.
Maya: Maya turned 3 in August and is attending preschool two days a week. She absolutely loves going to school and her favorite thing is art. She loves playing with her toys and creating stories and characters with her big sister. She enjoys swinging and going on adventures. Maya has a lot of passion and drive and will no doubt do great things with those character traits.
Olivia: Our adorable Olivia Laine joined the world on May 24. She had a tough time transitioning to the world and let us know her uneasiness through quite a bit of screaming and crying. After receiving cranial sacral treatments (light therapeutic touch and realignment) Liv has shown great improvement. She now loves to smile and absolutely loves being with her big sisters. She also loves mama – a lot. Her beauty and joy make us all smile.
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I got a tattoo a few years ago that says “Love is all you need” (no, I am not a big Beatles fan) because sometimes the days feel crazy. Sometimes I want to pull my hair out because my girls are demanding a lot of me or my body hurts from carrying around a baby and nursing her all day. Sometimes, I feel alone and like I don’t have any girlfriends to grab a coffee with or any moms to have over for a playdate. Sometimes, I feel like I’ve forgotten how to connect with my husband unless it’s talking about our kids. Sometimes, life just feels hard. Yes, I realize these are very “first world problems”, but they are also real and therefore, I believe, valid.
But, when I come back to love I remember that it is all going to be ok. Because, love is all I need. Sometimes it even feels like it’s all I have. I don’t have patience and I don’t have wisdom or even strength – but I do have love and that is enough. Love is enough to make me smile at the absurdity of my daughters whining. Love is enough to make me snuggle into the baby and rub her amazing head against my cheek even though she just screamed so loud I may have lost some hearing. Love is enough to make me grab my husband for a hug even though I’m not sure the last time our souls connected.
It’s not hard to LOVE. Love is enough. As my favorite blogger says, Love Wins. Love is all you need.
The funny thing is that this tattoo is not perfect. The s is too thick and the y is too thin. Sometimes it drives me crazy. But…love isn’t about perfection. Because, really, what is perfection anyway – it’s not real. I am not the perfect mother or wife, but when I love then I am good enough.
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I’ve been struggling with feeling jealous of other babies. It’s not a pretty thing – I know. Having a high needs baby is pretty exhausting and it’s hard for me not to compare her to other babies I know. It’s little things – like getting teeth, sleeping through the night, sitting up, laughing, playing…things that I can’t help but be jealous of a little bit. In my hardest times I feel like Olivia is just going to cry and cry and be a fussy baby forever – like she is never going to grow out of this. Of course, my logical self knows this is not true. But, when you are tired and have been listening to your baby cry all day you don’t feel very logical. The sad thing is that I know firsthand that all babies develop at their own pace. Amalea and Maya reached milestones at very different times. But it’s still hard. It’s hard to see other babies doing things I long for. Jealousy creeps in and I hate that feeling. It feels ugly, it feels selfish, it feels ungrateful, it feels unloving, it feels judgemental, but I am just being honest..it is there. Obviously, I know Olivia will reach each of her milestones in her own time and I need to be patient and let her get there. But, in the moments I feel extra exhausted or my shoulder is killing me because I have to hold her all the time or she is crying for an extended time…I feel jealous.
Another ugly thing I’ve been dealing with is worry. I have always been a worrier and I know at times it can be very unhealthy. But I worry – mainly about Amalea having another seizure. Since her two main seizures happened when she was going into and coming out of sleep I worry the most at bedtime and in the middle of the night. When she goes to bed I get a knot in my stomach and I listen extra attentively until I know she is deeply asleep. When she wakes up in the middle of the night to go to the bathroom I lay awake waiting for her to fall back asleep. She had a fever this weekend and I was so worried that every little noise she made, even a deep breath, made me jump a little. The really hard thing is that if she has another seizure there is not going to be anything I can do to prevent it. If it is going to happen, then it will happen, whether or not I am beside her. It’s just scary. And that fear makes me worry and it keeps me up. No matter how desperately I want to control life, I cannot. I need to let it go. I need to stop worrying.
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Here are a few random facts about me that feel like confessions or guilty pleasures. Why am I sharing – just because. That’s all. (and yes, there are a lot of simple sentences in my post today – that’s not how I usually write, but today it felt right)
First, I love pop music. I’m pretty out of the music scene right now and what is popular since radio in Santa Cruz is awful, but…when I get the chance I love blasting pop music. I’m trying to get my girls to love it as much as I do. I hope one day we can have silly posters on the wall of their favorite pop artists.
Second, I enjoy eating fast food. Gross, right. I limit myself because I am not dumb – I know eating healthy is important. I believe we should know where our food comes from and I believe healthy food tastes better. And still, sometimes I just want McDonald’s french fries.
Third, I love reading cheesy novels and watching cheesy television and movies. I don’t know why because half the time the books aren’t even well written or the acting is awful, but still, I love it. Bring me a chick flick any time. Let me curl up with a novel about ridiculous love. Stream Netflix as fast as you can so I can get my cheese on.
Fourth, I have a ridiculous sweet tooth. No, really…like, it might be a problem. I love chocolate. Oh, and donuts. A lot. Like, really really a lot. I have been known to eat sweets that are not even mine just because they are there in front of me and I cannot resist.
Sigh, I feel so much better now that you know that!