Ketogenic Diet

So it’s been a tough few days with Aidan’s seizures. He had some doozies that resulted in him hitting his head pretty hard. We’ve also noticed a few variations of his typical seizures.

We’ve tried meds in the past that haven’t worked. We also tried the Modified Atkins Diet. It’s based on the Ketogenic Diet and is a medical treatment. While both of these diets have been shown to reduce or control seizures, no one has known why they work…until now.

Check out this news article. This medical development is incredibly important because it means that at some point there could be a medicine that could mimic what the brain needs or it could possibly be better understood who would benefit from these meds. The Keto diet is very exact and difficult to administer, and most likely there are people who have not tried it for this reason. So, yes, a pill form could save a life.

Keep studying, scientists and doctors. We’re counting on you.

Friend, The Verb

So if you friended us on Facebook you would know that in anticipation of my big upcoming birthday, my amazing husband has already given me a cake, dozen roses, hand decorated coffee mug. Can’t help but think my actual birthday will be pretty fabulous (minus the fact that he actually won’t be home).

You would also know that this fall we are starting the long anticipated journey to Boston Children’s Hospital for spine and possibly hip surgery. We knew it was coming. We have no idea when (6 months, 2 years?) it will happen but we start our consults in September.

So don’t you totally want to Friend us? We did inclusion so we’ll definitely friend you back.

I’m also wildly enthusiastic about people who tweet, pin, email (remember that?) or find some other way to share my posts. It’s all about education, building community, and helping other families feel less alone.

I double dog dare you to search for your favorite post and share this weekend.

Have a great weekend!

11 Things – Part Two

Shasta from Outrageous Fortune tagged me in a huge blogger chain letter. Check out the first part here. The following are my answers to her questions for me:

1. What products do you have in your shower?

I’m not much of  a product person so it’s just the basics. The only thing I’m super picky about is my Pears body soap.

2. What one frivolous (not essential to survival) thing would you want with you on a desert island?

Definitely my Kindle full of books

3. What’s your favorite throw-together meal?

Chocolate chip pancakes or pumpkin chocolate chip waffles – breakfast, lunch or dinner.

4. If you could only visit one restaurant for the rest of your life, which would it be?

Our local restaurant called the Friendly Toast has hearty, home-made, diner-like food in a funky atmosphere. I’m a picky eater and there are several things on their menu I’d look forward to, including the breakfast burrito.

5. What color is your favorite pair of shoes?

My mid-life crisis come early boots with 4 inch ridiculously high heels that I can’t walk in but make me look fabulous are black.

 6. Dogs or cats? (Or, “other”?)

The fake fish in our toy aquarium that doesn’t eat, poop, smell, or die.

7. Describe a moment, however brief, in the past week when you felt joyful.

Waking up to discover that my husband bought me a dozen red roses to celebrate 28 days before my birthday. Can’t help but think my actual birthday will be pretty amazing.

8. You have an entire day off from responsibilities, but you can’t spend any money. What does your free dream day look like?

Easy peasy….ocean, book, beach chair, alone.

9. If you had $1 million to give to charity, what cause would you give it to?

I’d buy wheelchair accessible vans for people who need them. There’s no help if you can’t afford one and the cost is exorbitant. I know the need for independent mobility and the risk of isolation too well. We were blessed to have a community that raised $40k for our van and I would love to pay that forward.

10. What is a picture that you wish you had? Either a moment in time that wasn’t captured, a picture of a person passed or a place in the world? Anything you would like an image of.

Another easy one. I have the most beautiful pictures of my second son’s birth; pushing, crowning, the works. I was more or less pushing as I walked into the hospital with my first son. So, needless to say, the camera and birthing bag got left in the car. I wish I had his birthing pictures.

11. Would you rather have a blanket made of the softest material imaginable with a stone bed or a rough, scratchy blanket with a gloriously soft and cushy bed?

This question makes so many of my sensory nerves fire that I just have to say, my comfy bed with my heavy quilt.

And these are the bloggers I tagged to answer my questions. Check them out because blog love is the point here.
Happy Being Trevy
Beautiful, Broken Me
The Mommy Psychologist
Kader Care Coalition
Finding Strength to Stand Again
Metamorphosis to Health
Team Charlie Claire
Painting for Hailey

11 Things

So I was tagged in the blog version of a chain letter from Shasta over at Outrageous Fortune. I’ve loved reading both her book and her blog. It’s getting to be summer and you know you’re headed to the beach so you really should buy her book. (Shameless plugging for a great writer and blog friend done).

Even though I’d really love to receive all of those postcards or recipes or whatever in the mail, I never actually participate in chain letters. But hey, this is the kind of thing we fabulous bloggers love to partake in if it means creating a little blog traffic. (You thought it, I said it).

It’s a two parter.

So here goes…

The Rules

1) Post these rules.
2) Post 11 random things about yourself.
3) Answer the questions set for you in the post of those who tagged you.
4) Create 11 new questions for the people you tag to answer.
5) Go to their blog (or email them or tweet them) and tell the people you tagged that you’ve tagged them.
6) No stuff in the tagging section about “you are tagged if you are reading this.” You legitimately have to tag 11 people.

Now…

11 Random Things:

1. I was raised by two hippie parents who worked with Martin Luther King Sr. and Cesar Chavez on social justice issues. The concept of giving voice to the voiceless clearly goes back to my roots.

2. Martin Luther King Day is my favorite holiday. We read his “I Have a Dream” Speech at the dinner table every year. I loved the year that Liam was finally able to read part of it instead of just listen. I also read King’s “Letters from a Birmingham Jail” every year. You should too. Google it.

3. I’m related to David Bowie. Truth.

4. Every time I get off an airplane now I’m genuinely upset that there’s no flash mob waiting for me.

5. I did the two things on my bucket list in the past year; audition for a musical, and well, the other thing was fabulous (and legally and morally on the up and up) and I’ll never tell.

6. I’m turning 40 in a few weeks. There. It’s out. I remember when that sounded ancient but 40 is the new 25, right? I’m doing it with grace and joy because I have much to celebrate right now.

7. I come from a long line of skinny dippers.

8. I once gave a piggyback ride to a Russian girl who spoke no English. She got cancer from the Chernobyl accident. I did the only thing I could do, sing her a peace song in Russian. She started singing with me. It was an amazing moment.

9. Said parents from #1 also told me that the legs were the best part of the lobster. Before I could pass on this generational bold-faced lie, my mom fed my son his very own lobster.

10. I snuck into the balcony at my wedding before my big entrance because I really wanted to see my friends sing. I didn’t care if it was against the rules or if I was seen because it was my day.

11. I met my husband in a real castle.  Our love story is one of the most….interesting you may ever hear. Including the time he told me he wanted to marry me and I responded by saying I felt sick (abandonment issues, anyone?). Despite a rocky start, I can say 16 years later than my marriage is one of my proudest accomplishments.

11 Bloggers that I’ve tagged (and oh yeah, the 12th thing about me is that I’m not really a rule keeper so there are only 8 people). Challenge by choice bloggers:

Happy Being Trevy
Beautiful, Broken Me
The Mommy Psychologist
Kader Care Coalition
Finding Strength to Stand Again
Metamorphosis to Health
Team Charlie Claire
Size Doesn’t Matter So Dream Big

11 Questions for You:

1. If you could go back to school, what would you study and why?

2. What’s the story behind your name?

3. Ocean, mountain, or lake vacation?

4. What’s your go-to comfort food?

5. What’s your proudest accomplishment?

6. What’s your favorite line from a movie?

7. If you could ask any one person from history a question, who would it be and what would you ask?

8. What’s one thing on your bucket list you have yet to accomplish?

9. I can’t resist asking what’s been your favorite book?

10. Why do you blog?

11. Who would you want to play you in the movie of your life?

To anyone who hasn’t been tagged: Take a few of these questions and ask them around your dinner table tonight. Stay tuned tomorrow for my answers to Shasta’s questions for me.

Belonging

We all want to belong, to have friends, to be part of community. It’s in these relationships that we find the fullness of life, not how much we know or what we’ve accomplished, but who we’ve journeyed with.

This blog was birthed out of the desire to share my story and in doing so appreciate the journey. But I also fully believe that sharing our stories builds connections, makes someone feel less alone, creates community. None of this is to be mistaken for or is intended to replace real human connection.

Our kids are no different. They want to belong and they have to muddle through the developmental stages of figuring out how that works and what it means or maybe when it’s best not to belong.

And how do you even start if you don’t have words to make a connection? Aidan’s relationships are limited and manufactured. That doesn’t speak to the quality of his classmates, who have been incredibly welcoming to him, but to the challenge of making friends without words.

Still, I’m sure he longs for it like the rest of us.

A special educator friend of mine shared this wonderful story about her student who has autism. He gave a presentation on Martin Luther King, and giving the presentation in and of itself was a great accomplishment. To bring MLKs ideas home, this child shared his dream that all kids should be able to play together. Something in him knew he was different, and that while different is to be celebrated, it also requires a bridge of some sort. How do kids who can’t speak, kids who don’t grasp social cues, kids with sensory issues, how do they play together?

The teacher then asked for the other students to give feedback on his presentation. Every one of his classmates had something positive to say and each one was heard, and it that moment, the presenter felt connected.

And there is one bridge; encouraging each other, which may lead to finding commonalities, which just may lead to belonging.

Snippets of Reading

— 1 —

So sometimes being a blogger really means you’re just an obsessive  blog reader. That’s what I’ve been doing this week. Partially because I was unmotivated during this rainy week and partially because the blogosphere was alive with passionate posts about parenting.

— 2 —

This piece sums up how I feel about parenting in light of all the hullabaloo out there in the past weeks – do what is right for your family.

— 3 —

The MommyPsychologist reminds us what the Real Parenting Problems Are and

— 4 —

I’m sure you’ve already read this amazing article about the real Mommy Wars found at Rage Against the Minivan which is the best blog title ever. If you haven’t, you need to… really.

— 5 —

And this post by Rachel Held Evans is a great answer to the ridiculous question of being enough.

— 6 —

I really didn’t think I had anything to add, but then I did, and it came in a burst, as most of my writing does. Garreth came home and I said, “I really meant to start dinner or at least clean up the kitchen so you could start it, but I was struck with a post.” That’s what it looks like behind the scenes and fortunately, he gets it.

— 7 —

And a good laugh to start your weekend: Aidan was driving around at school when I went to pick him up yesterday. As soon as he saw me, he started driving in the opposite direction (ooooh, great turning skills and communicating).  I don’t think I like this independent mobility thing after all.

For more Seven Snippets, visit Bringing the Sunshine!

The Other Side of the Boob

We’ve all been reading a lot about parenting this week, right? I’ve decided to chime in. There seems to be a dichotomy between what’s presented in the media and what flesh and bone, heart and soul women are communicating to each other. In the media, we look like we’re tearing each other down (are you parenting in this particular way because if you’re not than you suck) while I believe women tend to support each other in their parenting differences. If we’re being forced to take sides on the issue then here’s mine – love your child, however you want to in whatever way works for your family with whatever choices are available to you.

With this great parenting debate comes the issue of breastfeeding. Because of my experience, I come down firmly on the side of the vast grey area where most of life is lived. When the shouting stops, perhaps people will notice the shadow of my NICU self crying in the corner with my hands over my ears.

You see, sometimes neither breastfeeding nor bottle feeding are actually choices.

Wait, let me back up. I nursed my firstborn and I loved it. I didn’t even wear a hooter hider, not because I was trying to make a political statement but because it never occurred to me and no one ever asked me to. In the late days of my pregnancy with my second son, I remember looking forward to breastfeeding him. I remember believing that all the pain of pregnancy would be worth it, to be able to hold my baby and nourish him in so many ways.

Then I had Aidan, my baby with complications, my son who needed to stay in the NICU for three long months. I longed to breastfeed him, I tried to breastfeed him. He was too sick. There was my baby being poked and prodded and hooked up to machines and I was helpless. There were times I couldn’t even hold him. I would have given anything to cuddle him and feed him a bottle of whatever. Like a “good mother” I decided to pump my milk so at least I could give him nutrition when he was ready. I can’t remember how long that lasted, but it wasn’t long. I was raising a toddler; I was commuting to a hospital; I was trying desperately to keep my head above water and that damn machine kept reminding me of what I couldn’t have.

No one needed to ask me if I was “mom enough” because my shame had already answered.

So my NICU self was full of guilt and grief. Yes, I wanted to breastfeed my son for wonderfully selfish reasons. But seeing him in the NICU, I also wanted to be part of his healing, to boost his immune system, to nourish him. I was mostly encouraged and supported in my feeding choices at this time. Only one person actively shamed me – a lactation consultant.  I had several other wonderful lactation consultants but because of my fragile state and the amount of compassion I needed, I remember that one voice the most. I dreaded the question, “Are you breastfeeding?” because I was exhausted and scared and could only feel failure. My shame was sometimes laced with anger, as in, “I’m too busy keeping my baby’s oxygen machine plugged in and watching for his lips to turn blue to believe that breastfeeding is an important issue here.”

And this is the grey place. If no one was guilting me then why did I feel so much guilt? How do you grieve with a mother who has lost so much even though her child is still alive? How do you celebrate the small things (he can breath on his own) while mourning other things (but he’ll never breastfeed)?

The answer is, I really have no idea, but we have to do it together.