Last night’s Beads of Courage event was incredible. I’ve been replaying the night in my mind all day- all the inspiring conversations I had, the people I met, and the encouraging feedback I got from telling Grayson’s story. Grayson was a rock star the entire night, totally rising to the occasion and being completely charming even as he was out way past his bedtime.

I will do a post on the night complete with pictures,video and my thoughts on the experience sometime this week, but until then, here’s a photo my friend took early in the night. Love.

As September comes to an end, I’m hoping that life will somewhat slow down for awhile and I can catch my breath. My goal for October is to get stuff organized. And by stuff, I mean the piles, and piles, and piles and piles of clothes that are slowly closing in around us threatening to suffocate us in our sleep. It always amazes me that for a person who never has a thing to wear (seriously), I have clothing covering every inch of my bedroom and always have 37 loads of dirty laundry waiting to be washed. Sigh. And then there’s kid clothes- the clothes that have been outgrown, the ones that currently fit, and the boxes and boxes of hand-me-downs from generous friends that are waiting to be worn. Thankfully, I have a newborn nephew and a friend with a baby girl on the way that I can happily pass G and C’s outgrown clothes on to.

So now is the point where as a self proclaimed Open Book, I should show you a picture of the disaster that is our clothing situation. But that would just be too embarrassing.

So instead I’ll show you a picture that made my heart explode with happiness when it was texted to me this morning. This is Grayson, in Sunday School. Three-Year-Old Sunday School, not the baby nursery. Love.

Anyway, back to Organization October. We (knock on wood) close on our new house at the end of the month, and I am determined to simplify, simplify, simplify when we move in. I feel like we need a life makeover in three main areas: stuff (cut the clutter), finances, and food (cooking, smart grocery shopping, etc). Hopefully, I can be disciplined this month to do some planning in these areas- because if I can’t even make a plan, I won’t have much hope in actually carrying one out.

In other oh-so-exciting news, ummm…my daughter is equally amazing, amusing, and freaking me out. As I undressed her for her bath tonight, I counted 3 bruises and 2 scratches on her face- all from today. I know in the world of mobile children this is totally normal, but geez. Charlotte is crawling and pulling up on everything now, and somehow her face is getting banged up in the process. And this afternoon, I leave the room for 2 minutes to take a phone call when I hear hysterical crying from Grayson. I walk in, he’s crying and vomiting, and Charlotte is on top of him, trying to make him feel better by poking him in the eye. Thanks kid.

I don’t have any pictures of her banged up face, but here’s a cute one from before music class on Saturday morning. Oh, the music class where she proceeded to crawl in the lap of all the dads in the room, one by one. She had zero interest in the moms, not even her own. Hmmm.

That’s all I got tonight. We just finished watching the Breaking Bad finale, which is kind of hilarious because this is only the second episode I’ve ever seen, the first one being the series premier. I guess it’s the television equivalent of reading the first chapter of a book then skipping to the last chapter to see how it ends.

OH! With the excitement of Beads of Courage I totally forgot to figure out who won my book giveaway from last week. So I just did the random # generator and my amazing friend Kristi is the winner! I can’t tell you how THRILLED I am that she will be reading this book, because there is no mention of B-12, the methylation cycle, Mito, autism…etc, etc, etc. Kristi spends a huge chunk of her life researching and advocating for families’ health, and she deserves a break and some fun reading material. Yay!

Hope ya’ll had a great weekend!

So, my sister-in-law wrote a book- an actual, published book- and I’m kind of in awe.

Kasey is one of those people to whom things just happen: strange, hilarious, and sometimes embarrassing things. And Kasey is also a natural storyteller.

Crazy, sometimes unbelievable true stories + natural storytelling ability= Hilarious, fun read.

What Lurks at the Bottom of My Panty Drawer: Lesson’s I’ve Learned from Kiddos, Critters and Coochies (yes you read that right) by Kasey Brooks, is a collection of 70 true stories from her life. Written specifically for stressed, overcommitted women, each story is meant to be a quick “happy pill”. The stories are short, funny and each offer a “life lesson” at the end.

My personal favorites in the book are the account of her DISASTROUS first wedding and honeymoon, the story of the prayer request her grandmother voiced regarding Kasey’s upcoming delivery of her daughter, and the chapter titled  Umm…I Think You’ve Seen My Vagina. Intrigued yet? Oh, and I’m indirectly in the book, in a story about some forgotten items from my bachelorette party left in Kasey’s car. And then her car broke down. Oops.

You can order the book on Amazon in paperback or the Kindle version here.  Also, Kasey has a facebook page- head over and Like it here. And I’m giving away an autographed copy of the book- leave a comment on this post or on facebook and like usual, I’ll number the comments and use a random number generator to pick a winner on Friday.

If you are local, Kasey is having a book signing/book reading next Thursday at 6:30 in Houston- details on her facebook page. Bring a friend for a fun evening out- I know Kasey would love for you to join her!

Kasey, I love, LOVE the book, am so proud of your accomplishments, and feel so lucky to have a personal connection to your crazy life!

The stomach bug has being having a party at our house since Thursday, and the party needs to END. NOW.

Thursday morning I noticed Grayson acting a little different right before we left for school. He was kind of fussy and was rubbing his eyes. Then in the car, he fell asleep, something he hasn’t done (on the way to school) in quite a while. Hmmm. I mentioned this to his teacher and told her to call me if she needed to.

I was getting my hair cut later that morning when I got the call. Grayson had been crying all morning and just wasn’t himself. Ok, I’ll come get him. As soon as I saw him, sobbing in his teacher’s arms, I knew we were headed to the ER. My Mommy Instinct was screaming, and just looking at him, I knew he was sick.

Miserable ER selfie

Thankfully, at our hospital, they know when Grayson comes in sick he needs IV fluids started right away. It’s so nice not to have to sit in the waiting room or try to convince skeptical nurses and doctors that my kid is in fact, sick enough to be in the ER. G was admitted several hours later and spent Thursday-Sunday in the hospital. He never ran fever, but was vomiting and was obviously miserable. His Mito doctor ordered an MRI of his brain, and I begged the GI team to change his feeding button while he was under anesthesia; we always have to do button changes as an “emergency” when it comes out, so this time it was nice just to have it done while he was already in the hospital.

Feeling crummy 😦

 We had to cancel G’s birthday party Saturday, but thankfully he was able to come home Sunday night, and spend a few hours of his actual birthday at home. He was super happy about this- sweet boy.

Hospital Bed-Head Birthday Boy so happy to be home

Meanwhile, Charlotte started showing signs of the bug at home. She was throwing up, acting clingy, fussy and just not her happy-go-lucky self. Sweet girl has been taking longer naps than usual (except for today- NONE-oy) and having a hard time going and staying asleep at night. Thank goodness, the vomiting seems to be over and hopefully she’s about back to normal. I think having me away so much at the hospital threw her off and maybe that’s a reason for her fussy/clingy-ness the past few days.

Precious sick girl napping on a walk

Sunday, my mom called me at the hospital because she wasn’t feeling too well. I came home so she could go to bed- another one down.

Sunday night, I was exhausted and disappointed how the weekend turned out, but thankful that at least I wasn’t sick. Uh…not so fast. I woke up Monday morning SICK. I spent the day throwing up and on the couch- awful. Today I’m feeling much better, but Ryan stayed home from work today with the bug, and is still down for the count.

Good grief, this has been a challenging week. Grayson is back at school, and Charlotte and I were able to get out a little bit today. We aren’t pushing it though- we need everyone well for this weekend- Beads of Courage!

Dear Grayson,

Happy Birthday to my precious son, my sweet Grayson Robert!

Grayson, three years ago, you took me by surprise by being born a few weeks early, and since that day, have continued to take me by surprise. Life with you is never boring!

Your life has taught me so many things, but especially to consider what’s truly important, and to just roll with whatever life throws at us.

We were supposed to have a party for you yesterday, a music party with all your friends and family. Unfortunately, you got sick on Thursday and have been in the hospital since then. Fortunately, you are feeling much better now and the doctors expect that we’ll get to go home today.

You don’t know a life without pain, without seizures and vomiting, without needle pokes, tubes, and beeping pumps. But you also don’t know a life without love, hugs and kisses, and thousands and thousands of prayers. Your life is precious, and there never was a more loved and adored little boy.

At THREE, your favorites include: Veggie Tales music (especially VT worship, Bob and Larry Sing the 80’s, and VT Toddler Tunes), swinging, your music table (playing with it upside down), Mommy, Daddy, and Grammie singing to you, and going to school (you love your teachers and music therapy). You weigh 29 pounds and are in size 3T-4T clothes.

You won’t blow out a candle today, have a slice of birthday cake, and you won’t unwrap any of your own presents. But we will celebrate you. We will sing Happy Birthday, hug you tight, and thank God that you are here. Every birthday you are here with us is a gift to all who know and love you.

Happy Birthday to my hero- I love you sweet boy.

Love,
Mommy

Dear Charlotte,

Happy 8 months sweet baby girl! This letter is a day late because your brother is back in the hospital, and I was with him for most of the past two days. I missed you so much, and have been soaking up extra snuggles this morning with you. I’m sorry your schedule and routine have been so disrupted; I can tell it bothers you because you are clingy and fussy- totally unlike your usual happy-go-lucky self. You’ve also been a little under the weather the past few days with some throwing up and congestion. You seem to be on the mend though.

Two thirds through your first year, you weigh 16 pounds, 14 ounces and are continuing to climb in the weight percentile (now 35%). You still love nursing as well as formula, and are continuing to enthusiastically sample any food I give you. You love cheese and yogurt (just like your Uncle Peter!)but will happily munch on things like broccoli, jicama, and pears as well. You wear size 3 diapers and 6-9 month clothes. You still have zero teeth, although you’ve sporadically had all the teething symptoms; who knows, maybe one is getting ready to pop through.

The biggest change in your world right now is you are now mobile! You are crawling everywhere, but you still prefer army crawling over regular crawling on the hard woods and tile. You are a very busy and curious little girl, know what you want and are determined to get to it. You still adore your brother and we’ve really had to watch your curious fingers as you poke them in his eyes and mouth and grab his hair. I know he loves you too and usually looks at you with an expression of half amusement and half annoyance.

You are learning to pull up to standing as well, which is both thrilling and scary to me! Last week I started bathing you in the regular tub, and the second night, you totally pulled up to standing in the tub- yikes!

I love to hear you babble, especially since you have started saying “Ma ma ma ma ma” throughout the day. You are too cute. I can’t wait until “Ma ma ma ma ma” actually means “Mama”.

You started school this month, and your daily report always says you are “Super Happy” and never cry. You also do great in the church nursery on Sundays and Tuesdays. We are also taking two music classes, and you love to bounce to the beats and play the bells and the drums. You hold tight to your bell and never want to put it back in the instrument box!

You are my sunshine and my joy. I love watching you grow and change every day into the most amazing little person. I love you, sweet Charlotte.

Love,
Mommy

Grayson Robert Baker will be three years old this Sunday. His three years of life have been filled with love, laughter, and sweet tender moments. But the story of his life is also one of pain, uncertainty, and many unexpected events. The journey of any child or person living with Mitochondrial Disease is one of ever ending challenges.

This is Grayson’s story, told in pictures and by his Beads of Courage beads. The color or shape of each bead represents one part of his journey. The colors in parentheses in the rest of this post details which beads represent what.

On September 22, 2010, we were blessed with a tiny, yet seemingly healthy baby boy.

At 5 days old, Grayson had his first ambulance ride (magenta) spinal tap (tortoise), IV and blood draw (black) and stay in the pediatric ICU (square heart). Unfortunately, this would only be the first, not the last time he would experience all these things.

Although scary, after his first hospitalization, we thought he just had a rough start and would now grow, thrive and develop into a “normal” kid. Then at about 3.5 months old, he wasn’t meeting age appropriate milestones. We started therapy (rainbow), and since those early days, Grayson has had hundreds of sessions of PT, OT, Speech, music, and vision therapy.

The EEG was just one of many tests and procedures Grayson endured in the first year and a half of his life leading up to his diagnosis of Leigh’s Syndrome.

Grayson has been in an ambulance (magenta) 5 times and been admitted to the hospital and had to stay (yellow) in what equates to over a month of days since he’s been born.

Although difficult and stressful, we are so thankful for modern medical technologies like MRI, CT, EKG, and X-rays (light green) that aided in pinpointing exactly what’s going on in our little boy’s body.

And we are also abundantly thankful for feeding tubes (aqua), which supply 100% of Grayson’s nutrition.

We will no doubt be adding lots more beads to Grayson’s BOC strand, but it’s an amazing way to tell his ongoing story. If you haven’t already, please consider attending the Beads Inspired event on September 28 to learn more about Beads of Courage, Mitochondrial Disease, and Grayson. Click here to get your tickets.

Thank you for helping spread awareness this week about Mitochondrial Disease. Remember, not all children with Mito look sick. Although he is unable to sit up, walk, or talk, and has his feeding tube connected at all times, on a good day, Grayson “looks” healthy. Many people see him in a stroller and don’t know anything is wrong. A lot of kids with Mito appear healthy, act like other kids, but their cells do not function properly. Many can walk, but not long distances and especially not in the heat. Please consider this when you see a person who appears to be “normal” get out of a car parked in a handicap spot. Not all disabilities are visible or obvious.

Grayson and his Mito buddies thank you for all your support!


This weekend, I had the opportunity to attend a Mito S.P.A. (Support, Play, Acknowledge) retreat for parents, caregivers and adult patients affected by Mitochodrial Disease. In addition to being pampered and being able to relax in a hotel sans children, it was a good chance to catch up with friends, meet new people on similar journeys, and to hear the perspectives of adults living with Mito.

The activities were centered around the “Welcome to Holland” poem, which if  you’ve read my blog for awhile, you know resonates with me. The organizers did a fabulous job with the theme, and there were games, activities and discussions that gave us all a lot to think about. They also had several slideshows with pictures we had sent in, which of course were tearjerkers.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

We all created a Rembrandt:

It was a great weekend, and since the babies did just fine without their momma for a day and a half, I really hope they do this again next year!

Today starts Mitochondrial Disease Awareness Week. Of course there are a lot of quotes, pictures and memes floating around Facebook and other sites to spread awareness. I’ve always liked the battery analogy when describing the disease to someone who’s never heard of it.

When you start the day with a full charge on your phone, you are able to do a lot of things before it runs out: make phone calls, send emails and texts, post on FB or Twitter, check your bank statement, and maybe even spend some time playing games. By the end of the day, your battery might be low, but you’ve probably been able to accomplish all the tasks you needed your phone to do.

Now imagine that you start your day with the same amount of tasks needed to be accomplished on your phone, but this is what your battery icon showed:

This is what people living with Mitochondrial Disease face- their mitochondria in their cells do not produce enough energy for their body to function properly. They simply cannot accomplish the tasks or live the quality of life someone with a “full battery” is able to live.

Mitochondrial Disease can affect any organ system in the body and symptoms can vary significantly from one person to the next. In my circle of friends who have kids with Mito, none of our kids are affected the same way. Some kids have severe GI issues, but can walk, talk and cognitively are fine. Many have feeding tubes but some don’t. Many have seizures, but not all. It’s especially amazing/strange to me that my friend’s son who also has Leigh’s Syndrome (a very specific type of Mito) presents so very differently than Grayson. If you didn’t know, you would never guess they have the same disease and the same awful prognosis.

If you would like more info on Mitochondrial Disease visit www.umf.org or www.mitoaction.org. Both are great organizations who offer wonderful information and support.

Also, if you have any questions about Mitochondrial Disease (or Leigh’s Syndrome specifically), Grayson, or anything regarding parenting a child with Mito, ask me in the comments and I’ll write a post later in the week answering questions (if I get any-ha!).

9/11/2001: I was a senior in college, and had just gotten out of bed and was in the process of washing my face. My best friend rushed into the bathroom, yelling urgently that America was under attack. She turned the faucet off even though my face was still covered with soap. I was confused, disoriented and couldn’t see clearly. And most of all completely caught off guard.

9/11/2012: Last year on this date, I was also confused, disoriented and couldn’t see clearly. And most of all completely caught off guard. What I believed was going to be a routine doctors appointment turned out to be D(iagnosis)-Day.

It truly does not feel as though twelve months have passed knowing and living with Grayson’s diagnosis of Leighs. Last year, I wrote this post and was overwhelmed with the support I received from my online as well as my in-real-life community. Your comments, emails and prayers made such a difference in those first few dark days.

A year later, I can honestly say I am doing really well. I’ve made a conscious effort to make and maintain strong friendships with people who “get it”, and if they don’t get it, they listen and just let me vent. I’ve consistently gone to counseling, gotten medical help when I needed it, and in general I think I’m dealing appropriately and healthily with feelings of anger, fear and sadness.

Oh, and I had a baby. A baby whose life has healed me in so many ways.

I know there are dark days ahead. This journey has been, is, and will continue to be full of unexpected twists and turns. But every day we have with Grayson is a gift, and I am so blessed to be able to spend these days with my sweet boy.

And as always, thank you to those who continue to walk beside us and support and pray for our family and Grayson.

We have a contract on a house! I can hardly believe it, but our offer was accepted and fingers crossed, if all goes well, we’ll close next month.

So…she will probably have a brand new (PINK!) room sooner than later, but here’s some pictures of Charlotte’s completed temporary nursery.

There are a lot of brand new pieces in her room, but I also loved that I got to break open my “girl box” of treasures I’ve been collecting for years to use in a little girl’s nursery some day.