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.

I’ve decided I really like recapping our weekends on Sunday nights, and I’m just going to quit worrying about if these posts are boring, because a year or two from now, it will be me re-reading them and enjoying the memories.

Yesterday Charlotte and I had our first family music class (the male half of our family has no desire for such things) and we had a blast! Charlotte took it all in, and I loved watching her watch the other children and enthusiastically shake chew on the bells during instrument time. Her favorite part was the “community drum”- a large, low drum that everyone played together. My little musician, for the first time, pulled herself up to standing on that drum! And then she proceeded to belly flop herself on top of the drum, where she happily lay while everyone else played around her. Silly goose. Later that night, as I held my sleepy newborn nephew curled on my chest, I thought of Charlotte and her music class escapades, and that just seven short months ago, she was my sleepy newborn. Too fast ya’ll. Too fast.

I took this picture yesterday afternoon- if there ever was a legitimate need for Photoshop, I think this may be it. I love almost everything about this picture…sweet expressions, brother and sister holding hands…but oh yeah, my boy looks like he went 10 rounds with Mike Tyson. Ugh, those mosquitoes got him good. He looks awful, and that swollen eye- yuck. The bites are still angry red today, but look like they are healing. Thank goodness we didn’t have a photoshoot or major event this weekend!

We went to Target for a few essentials: this is Charlotte’s new favorite position in her carseat…cracks me up. And I’m not sure why her sippy cup needs an additional label with her name on it- I guess my smudged Sharpie name wasn’t good enough for school!

Sunday night we had pizza with David, Hannah, and Hannah’s sweet sister while baby Theo was passed around. After dinner, the ladies sat around talking, laughing and cracking up over a new book that I devoured this weekend. Stay tuned later this week for a review and giveaway!

Today I dressed the kids in their monogrammed Sunday best (Charlotte’s dress was $4 on clearance at Target- score– and I had her monogram put on it), attempted a cute picture (FAIL- ha!) and we headed to church. Oh, and yes, I know the bow is big, but it looks especially giant in this picture. I promise (especially Traci and Rebecca) it didn’t look this ridiculous in person.

Today at church, Grayson went to the 3 year old Sunday School class with his new aid. We are thrilled he’s starting this new chapter, and love that he came home with his first Sunday School artwork- a handprint with stickers representing his family. But Grayson being Grayson, couldn’t do anything easily. Yesterday I wrote a letter to the sweet woman who volunteered to be his aid, including what to do if he has a seizure. I wrote (from Grayson), “I’ve never had a seizure at church, but it could happen.” Well, as soon as we were making introductions, guess what happened? Sigh. It only lasted 3 minutes, and he was able to go on with the morning, but REALLY?!

This afternoon, I attended a baby shower for a sweet friend who is having a girl this fall. After a somewhat stressful morning, it was a fun afternoon sipping mimosas and eating petit fours while oohing and ahhing over sweet tiny outfits and soft baby blankets.

Overall it was a fun weekend- now to bed to prepare for another busy week! Hope ya’ll had a great one!

Well, September is here and is proving to be just as busy as I suspected. I’m finally sitting down to catch my breath after a whirlwind week.

Grayson has not had the easiest of weeks, poor kid. He had a seizure here at the house on Monday and then another at school on Tuesday, has been vomiting a lot, and overall hasn’t had much energy and has been really irritable. And to add insult to injury, today a mosquito (or more likely mosquitoes) decided to feast on his face- yikes! Thankfully, I learned just this morning to put lavender essential oil on bug bites, and within just a few minutes, he already looked almost normal again.

We finally wised up and got Grayson headphones for when we are out and about so he can listen to Veggie Tales without driving the rest of the world insane. He actually kept them on for almost three hours at church last Sunday. Sadly, we are at the point where Grayson can’t safely be in the church nursery anymore. Although he is still an infant in so many ways, he is too heavy and awkward to leave, so we are working on other arrangements at church. Last week, he went with us to Sunday school and church, and happily listened to his tunes almost the whole time.

My little social butterfly had her first day of “school” yesterday, and her teachers said she did really well. They described her as a “VERY active baby”- ha! She dove right in and started playing with the toys in the room when I dropped her off without even a glance in my direction, but was very excited to see me when I picked her up later that afternoon. Posing with her backpack (and munching on a leaf)…oh I can’t handle the cuteness- she is already such a big girl!

Today while Grayson was in school, my friend L came over to deliver Charlotte’s baby bedding! L so generously had the bedding made as a baby gift for us, and although it took quite a while to come, it is definitely worth the wait- GORGEOUS! I’m not going to post pictures until I can get some really good ones, but I will soon, I promise! Anyway, we went to lunch with L and Charlotte had her first pickle. This picture cracks me up, but I can assure you, after the initial shock, she loved it and happily munched on that pickle for several minutes.

(By the way, I can also assure you that my child doesn’t have to wear a giant flower on her head EVERY day. But she sure rocks them, yes?)

After lunch we went and introduced Charlotte to her cousin Theo. Theo was having a moment (while wearing one of Grayson’s tiny baby outfits, oh my heart) and Charlotte didn’t quite know what to think about all that crying. Again, I can’t wait to see these two in action when they team up in a few months!

In addition to keeping up with the kiddos, we’ve had quite a week on the home search front. For those of you keeping up, yes, we are still with my parents. We cooled the search for a few months to focus on enjoying our new family of 4, but have slowly been easing into finding a place of our own.

Grayson’s school is in an area of the city that is extremely expensive. And what we can afford is pretty much the opposite of extremely expensive. But, we want to be close enough to the school so that I’m not spending hours in the car each day (not fair to the kids or our gas bill). We also need either a one story or two story with a bedroom and bathroom downstairs for Grayson. And we need an area where we can put Grayson’s swing. So really we are basically looking for a needle in a haystack.

At this point, since January, we’ve either had contracts that fell through or have been outbid on no less than 6 houses. And we’ve found two that we LOVED but by the time we went to make an offer, they already had contracts on them. SO frustrating. This week, we’ve put offers in on two houses. One we ultimately decided against for various reasons, and we are waiting to hear back on our offer on the other one. Here’s the kicker: we haven’t actually seen the house. We’ll go look at in the morning, to make sure it’s as good in person as it is online, and should hear if our offer is accepted sometime Sunday.

So who knows if we’ll have a contract or not by the end of the weekend. I have determined that house hunting is not on my list of favorite things. But these two sure are…

Baby Theo is here! He was born last night after a looooong labor and I got to meet him this afternoon. He’s just precious- looks just like his daddy! 

Today is my 3 year “blogiversary”. Three years, and when I hit publish on this one, I will have written 365 posts. A whole years worth of posts.

I do sometimes think about the implications of having so much of my life, and my children’s lives, out there on the internet. I obviously use their real names and pictures. If I ever had a hint that their safety and/or dignity were threatened because of this blog, I would shut it down or make it private immediately. However, at this point, nothing but positive things have come because of the posts I share, and I will continue as long as it remains to be positive part of my family’s life.

When I look back on my first post, I kind of roll my eyes at my almost 9 months pregnant self. Ah, so blissfully unaware of what the future was to hold. I had no concept of what it would mean to become a mother who slowly discovers her child has profound special needs. And to think, back then the only time I’d heard the term “mitochondria” was in 9th grade Biology! I had no idea that this space would be anything more than a show and tell of my family- an electronic baby book of sorts.

This blog is my story- yes, I write for others to read and appreciate the comments and support more than I can express, but I also write for myself. I don’t regret anything I’ve ever shared on this blog, because it’s all authentic and honest. The circumstances surrounding my son’s life are heartbreaking, but having an outlet to share the lowest lows but also the joy-filled high moments is precious to me. I know if or when Grayson leaves us, I will have this record of his life for the rest of my life.

There are some things about parenting Grayson that I haven’t shared, and I do regret not writing about some of them. Sometime in the last 6 months, Grayson changed. My mom and I were looking through old posts last night (and seriously, if you’ve never watched the video on this post, do it now. You will die laughing) and it’s obvious how much more “with us” G was before he was hospitalized in April. It’s bittersweet looking back at earlier posts with pictures of my little boy, because he was so different. And when he changed, after that illness, I didn’t blog about it; I was in denial. But now I wish I had, to have that documentation but also to better deal with my feelings about it.

Assuming I continue this blog, I wonder what my posts will look like three years from now. I wonder if I will still be writing about the struggles of parenting a special needs child along with an active preschooler, or if I will be working through my grief because he’s no longer here. I wonder if I’ll be writing monthly letters to another child, or if our family building is complete and I’ll be moving into the next phase of parenting.

The hardest part of blogging for me is ending posts. I have a difficult time wrapping up my thoughts without just abruptly ending a post or sounding cheesy. So today I’ll just be cheesy. Thank you to all of you who so faithfully read my sometimes rambling thoughts and offer such positive and heartfelt comments. I appreciate them so much. I treasure each of you that I have “met” because of our respective blogs and fantasize about meeting up in person one day. And to my in real life family and friends, I hope you know how much I love, adore and appreciate each of you.

Love,
Elizabeth

I wrote a few months ago about how anxious I was to start solid foods with Charlotte. After the experience of attempting to feed my firstborn, I looked at feeding as something that takes an extreme amount of effort, is usually not successful, and is always frustrating. Oh yeah, and more times than not ends up in me cleaning up baby vomit in addition to baby food. Bleh. I do, however, have some pretty cute pictures of baby Grayson in his food-eating days.

Grayson at 11 months

I knew, just like with breast vs. bottle feeding her, I wanted Charlotte to take the lead and show me what was best for her. Logically, I know that she is totally different than her brother and her body is able to handle normal human skills like eating without puking every meal. Since I tend to spend, er, quite a lot of time on the internet reading parenting blogs and stalking FB groups, I’d heard about Baby-Led Weaning. Even when I knew very little what it was about, the theory behind it made a lot of sense to me and I decided it was something I wanted learn more about and try with Charlotte. 

Baby-Led Weaning skips purees and spoon feeding altogether and babies start with table food right at 6 months (The AAP now says babies can have any food under 1 year except for honey), or whenever they are physically ready to start solids. The theories behind this are babies learn to appropriately control how much they take in according to their appetite, learn to enjoy a wide variety of foods and are less likely to become picky eaters, and are able to practice and develop their fine-motor skills.

(I could go on and on about all that I have learned, but 97% of you probably don’t care about the details. If you do, I highly recommend the Baby-Led Weaning Book and/or checking out the BLW FB page. Great, practical advice and information in both. Or you can talk to me about it later.)

So. We have been doing BLW exclusively for about 2 weeks now (I was doing some spoon feeding at first, but Charlotte quickly lost interest when she discovered she could do it herself) and it’s been fantastic.

I am determined to make mealtime stress-free, enjoyable and adventurous for my little gal. I am completely embracing the sentiment that Food Before One is Just for Fun and looking at Charlotte’s food as a tool for her to explore, learn about texture, and decide for herself what she likes and dislikes. She makes a HUGE mess every time she gets in her high chair (admittedly a downside of BLW) but you know, whatever. We strip her down to her diaper while she eats, clean up, and move on.

At this point, it doesn’t seem like much of Charlotte’s meals are making it into her tummy (although her dirty diapers tend to tell a different story). But we aren’t relying on solids to give her nutrition or calories at this point- that’s what breastmilk and formula are for. Again, it’s all about experimentation and fun at this point. Although most bites she takes end up coming out of her mouth, she’s learning the appropriate size to bite off and how to manipulate that bite inside her mouth. Win!

I’m all about Charlotte eating healthy, nutritious food and learning to enjoy GOOD food, but I’m also not going to stress if she wants a French fry or ice cream once in awhile (she’s had both already). I’ll admit, I am horrible about preparing meals for Ryan and me, but I’ve embraced cooking for Charlotte. BLW recommends that the baby eat with the rest of the family and eat what they eat- this hasn’t been something I’ve been able to figure out just yet due to Ryan’s work schedule and the kids’ bedtime, but I’m working on solving that dilemma somehow.

Every day, it amazes me how much better Charlotte handles food than the day before. I can see her fine motor skills developing before my eyes. Right now I’m mostly feeding her food in “stick” shapes so she can palm it easily gum the part that sticks up above her hand (she has zero teeth and no pincer grasp yet). She does eat yogurt and applesauce from a spoon; I load it on the spoon and put it on her tray for her to pick up and feed herself. Incredibly messy- yes. Incredibly cute- also yes.

Obviously, I am really excited and fired up about BLW, because it’s something that’s really working for Charlotte, and is another step in helping me heal from the emotional wreck that was feeding Grayson. I realize it’s not for everyone, and that’s ok. I know I don’t have to say this, but again, feeding your child is highly personal and each child comes with unique challenges and preferences. Do what works for you and your family and move on!