Dear Charlotte,

Today you are 11 months old: one month from today we will celebrate your first year of life. Your babyhood has passed in a blink, and I can hardly believe the speed at which you’ve changed from that tiny newborn who we met last January.

Next week we celebrate your first Christmas! You already have so many toys, books and clothes, but I suspect Santa might be paying you a visit and bringing a few special things that are on your list.

I weighed you this morning- 20 pounds, 4 ounces! This means you have less than a pound to gain before tripling your birth weight- amazing! You wear size 12 month clothing and size 3 diapers. Your hair is long enough now that it can hold a bow clip. I miss your sweet baby headbands, but you want nothing to do with them anymore. The little bows make you look so much more like a little girl rather than a tiny baby.

You are still a fantastic eater and most of the time a really good sleeper. You still nurse, although only at night before bed, in the morning when you wake up, and the times you happen to wake up in the night (which thankfully aren’t many!). You drink 3-4 8 ounce bottles a day and eat 2-3 meals of solid food. Right now, your favorite foods are pears, chicken, cheese, bananas and black beans. You absolutely LOVE black beans. You also share my breakfast with me in the morning, which usually is toast or waffles.

You are learning to talk! This is my favorite thing right now- it’s just incredible to watch you imitate sounds and words. Your words/phrases include “Hi Baby”, “Mama”, “Dadda”, “Bubba” or “Gray” (for Grayson), “Bye Bye”, “Hi”, “Meow” (what does a cat say?), “Rrroar” (what does a tiger say?), and “Na na” (your word for cracker…(??)).

You are STRONG WILLED. Behind these oh-so-cute smiley pictures was an epic meltdown to get you dressed and that sticker put on your onesie, complete with back arching, screaming, and kicking. I am making a conscious effort not to react to your tantrums; I know they are normal and won’t last forever. But sheesh, kid. Not every diaper or wardrobe change has to be a battle. It really doesn’t, you know.

 You aren’t walking yet, but are pulling up on everything (EVERYTHING) and are starting to cruise. We’re taking bets whether or not you’ll be walking by your birthday. In the video below, watch closely- you stand on your own for a few seconds- something you’ve never done before. I’m so excited I caught it on video!

You FINALLY have 2 teeth! Your bottle 2 poked their way through last week, and you had an evening of a high fever as a result. You were so sad, your usually active little self limp and hot on my chest as I held you.

This video pretty much sums you up. You never stop, you love to talk and you are oh so cute.

Happy 11 Months to my little Charnado. I love you to the moon and back.

Love,
Mommy

Merry Christmas to all and to all a good night!

This morning, my mother in law was so sweet to treat us to breakfast at the Brookwood Community, a residential community that serves adults with disabilities. Santa, Mrs. Claus, and an elf were there for pictures before we sat down to eat. After my post this week on the quest for “perfect” pictures of my kids and how that just isn’t reality, I decided not to stress about getting perfect pictures with Santa, but just snap away and let my kids be themselves. I’m glad I did, because now I have sweet, real memories of a fun morning with family.

Santa was so sweet, and took extra time to talk just to Grayson, which I loved. Charlotte didn’t quite know what to think, but little Miss has never met a stranger, so she just rolled with it.

We were thrilled that the kids’ cousins, Q and C joined us for the morning!

Dear (MIL’s grandmother name) bought an ornament for all the kids. Ryan chose Grayson’s (cowboy boots) and I chose Charlotte’s (a Christmas tree)

Mommy and Me Muffins 🙂

Charlotte adores her cousins. They were so sweet to play with her and keep her out of (too much) trouble.

Happy Birthday to Dear! Kisses and Hugs from Charlotte

After breakfast, it was more fun playtime with cousins at Dear and Grandmommy’s house! Can you tell this is actually a singing Christmas tree with eyes and a mouth? Charlotte was mesmerized!

This picture cracks me up. Three cousins, all engrossed in technology. (See all those toys behind C? No thanks, she says. I’ll just sit and play with Dad’s iphone)

So Grayson had a little accident over at Dear’s house, so he got one of his Christmas presents early (sneaky guy!)- new jammies! I think he likes them because he went straight to sleep when we got home!

It was such a fun morning, and we are looking forward to more cousin fun this afternoon (with baby Theo) when the kids wake up from their naps!

This is my 400th post. It’s kind of incredible to me that I’ve had enough words to publish 400 posts, an even more amazing that people actually care enough to read what I have to say.

I feel like I should say something significant on this post, but what?

Maybe I should talk about Grayson, and how this little boy continues to both steal and break my heart every single day. How his laughter and smiles are so very rare anymore, but how that makes them even more precious. Or how I question God about the purpose of Grayson’s life; how could a loving God allow such a precious little person to both suffer so much and yet have no control over anything in his life. What is God’s purpose for Grayson- for him personally, not the impact he has on others? Because yes, I truly believe he has had a huge impact on many people in his short life, but what about him– what’s in it for Grayson?

Maybe I should talk about Charlotte, and again write about the light and the joy she is in my life. I look at her sometimes and can’t believe she’s here. I could talk about how she’s completely smitten with her brother but doesn’t know how to appropriately display her affections for him without causing him physical harm. How these interactions have given me just a tiny glimpse of how hard disciplining a child, especially a strong-willed one, is going to be.

Maybe I should talk about family, and how complicated so many relationships are. Or maybe I shouldn’t.

Maybe I should talk about friends, and how mine are the kindest, most generous, funniest, and most honest that they come and I feel sometimes I don’t give back a fraction of the kindness they show me. But I certainly hope some day I can repay that.

Maybe I should talk about me, and how I feel like every part of myself aside from being a mother has faded away. How I don’t feel creative anymore, or attractive, or confident in anything but caring for my children. And how my label of special needs mom has encompassed my whole being, and how I both fear it and cling to it. Or should I write about how doing typical activities with my typical daughter feel foreign and awkward, but also easy and wonderful. And how I wrestle with guilt when I sometimes leave Grayson behind so it things are easy and wonderful.

Maybe I should just end my 400th post now, because perhaps I shouldn’t hash out every thought spinning through my head tonight. I do, after all, need some material for post 401.

I haven’t sent out Christmas cards yet. There was a point last week that I had convinced myself not to do them this year; we really have no extra money and *newsflash* it’s really difficult to get a good picture of a disabled three year old who has lost most of his head control and a squirmy 10 month old who has  more interest in trying to grab (and probably break) my camera than take a decent picture with her brother.

Not that I didn’t try. And try again. And try a third time. I guess it’s no wonder I decided to forget about it this year.

But then I was sad at the thought of no Christmas card for my daughter’s first Christmas, and I do have two decent separate pictures of the kids. So today I’m scrambling to get them ordered.

Our life is good, but far from perfect. And I know that, and everyone else knows that. So why do I feel the need to send out a cleaned up/glossed over snapshot of my life on cardstock every December? What am I trying to say?

There are definitely moments of every day that are chaotic. We have some unique challenges and obstacles that most people don’t contend with that tend to add to that chaos. But my reality is this: most of the day we are ok. For the majority of the day, most days, no one is screaming or hurt. So why can’t we take Christmas card pictures that show the “ordinary” good of every day?

If I was really being “real”, out of all the pictures I attempted, this is the one I would probably put on our card. When I picture our good days in my mind, this is what that looks like.

These are my kids, my life. Charlotte: happy to be in the spotlight, always wanting something in her hands. mischievous and busy.  Grayson: sweetest boy ever, happy to be with his people and his music, but physically, not able to control his body.

But no, I can’t use this picture! I can’t have Charlotte holding a toy lobster and my camera lens cap on my Christmas card! Grayson has to hold his head up for 2 seconds so I can get him looking “normal”. And oh, I’ve got to get his arms out of the picture, because that’s not cute when they’re held like that.

But this picture is cute. And it is very much my life, much of the time.

But why do I care so much that Grayson look normal on our Christmas card? I was texting my friend during naptime and asked this very question, and in her wisdom she replied, “…because you wish he was”.

Ouch. But true.

But I guess that’s what everyone does with holiday cards, pictures on facebook and on their blogs- we present our lives to others (and sometimes ourselves) as we wish it could really be. And it works sometimes. I open beautiful cards with perfectly dressed children who are perfectly posed and think, wow, what an amazing life they have. How do they do that, is it real? How do they have it all together?

Because I sure don’t.

I’ll just say it. Life really, really sucks right now. I know it’s the season of thankfulness, and joy, and peace, blah, blah, blah, but honestly, I got nothing.

Our new house, which was supposed to give us some financial relief, has us drowning in debt already. Our inspector (if you can call him that) missed several major problems that are costing us thousands and thousands of dollars, which we don’t have.

Two weeks ago, we traded in my minivan for an older model so our car payment wouldn’t be so high. It was disappointing (I loved that minivan, a statement my 20 year old self would be horrified by), but it really was the best move, and my new van was fine. Fine until yesterday, when we were coming home from the ranch and a lady ran a red light, causing us to have a collision. We are fine (Charlotte actually slept through the entire wreck) and the van is drivable for now, but really?! Even though it’s drivable, Ryan says there’s thousands in damage, so who knows when we’ll get it back once it goes to the repair shop.

Grayson, while still stable, is throwing up a ton every day again, and today he had two seizures at school. We are having a consultation this week with an orthopedic surgeon about the possibility of the need for hip surgery, which is stressful. I really can’t complain about Charlotte, because she IS my sunshine and my joy, but dang, she’s feisty. I asked my friend today if it’s normal that she throws a huge fit every diaper and clothes change. Evidently it is, and I guess I just need to come to terms with the fact that we are racing rapidly towards the toddler years. Yikes.

So anyway, BAH HUMBUG. I definitely need some sunshine and happiness in my life right now- so thanks Josey for nominating me for the Sunshine Award (whatever that is- ha!). So instead of going on and on about my crappy life circumstances, here’s some answers to some random questions!

How it works:1. Include this icon in your post
2. Link to the blogger who nominated you
3. Answer 10 questions about yourself
4. Nominate 10 other bloggers to answer 10 new questions
5. Tell the people that they’ve won

1. If you could try out any job for a day, what would you like to try? Can I be Olivia Pope for a day? I want her body, clothes, apartment, and confidence. Ok, so maybe that’s not exactly answering the question, but that’s what popped in my head.
2. What do you like most about yourself? I think I’m a good friend. At least, I hope I am. I have the best friends ever, anyway, maybe I’m just really blessed.
3. What’s the last thing you read? The last book I read was my SIL’s book (need Christmas gifts? It makes a great stocking stuffer!). I really should read more actual books, but I mostly read blogs on my phone.
4. Do you believe in soul mates? NO. I believe God puts people in your life for a reason, but soul mates? Nah.
5. If you could go back in time to warn yourself that something was going to happen, would you? Certain things, yes. I’d like to think that if I had certain information I would have made different choices, but who knows.
6. What state/area of the world do you live in? Have you always lived there? Are you happy there? I’ve lived in Houston all my life except for college. Yes, I am happy here and am even more grateful that we live here now with Grayson because of the Med Center and excellent medical care.
7. Do you enjoy giving gifts at Christmas/Hanukkah or do you avoid it at all costs? Christmas stresses me out so much. I am not a very good gift-giver and am very self conscious about choosing gifts for people. The last few years Christmas has been really hard, having a child who doesn’t play with toys and can’t “get into” Christmas. I think as Charlotte gets older, Christmas will (hopefully) become fun again.
8. What country do you want to visit most & why? Here’s a “Confess your Unpopular Opinion” (especially for Josey, who I know loves to travel!): I don’t like traveling. I have zero desire to travel anywhere right now, especially another country. I have fond memories of trips I’ve taken, but I never get the “travel bug”. I think that’s weird, yes?
9. What is your #1 goal for the next 5 years of your life? Get out of debt. The universe is conspiring against us on this one. Sigh.
10. How did you find my blog? (if you remember) I’m assuming I found Josey when PAIL started. And then she sent Grayson the sweetest birthday gift last year right after his Leigh’s diagnosis- I can’t wait to get it back out and put it up in his new room!

I nominate Traci, Esperanza, Erin, Stefanie, thenelipotmommy, basebell6, Karen, Becky, allthesunforyou, and downonthefarm. And anyone else who wants to answer these riveting questions I came up with!

Here’s your questions! (Some of them are the same)

1. What aspect of  your life is most different than you had thought it would be/planned?
2. What is your favorite TV show?
3. Can you recommend a must-read blog?
4. How did you find my blog?
5. What do you like most about yourself?
6. What is your least favorite day of the week and why?
7. What about being a parent scares you the most?
8. What do you eat for breakfast?
9. Do you have an amazing must-have product that has changed your life?
10. What celebrity can you not stand?

My lack of blogging for a week is brought to you by the plague. All four of us have or had been sick since last Friday.

Friday morning, my mom, Charlotte and I went to Grayson’s school for Thanksgiving lunch. Unfortunately, G had a seizure earlier in the morning before we got there and was either asleep or crying throughout the event. I then had to take him to get a hip x-ray in the med center (we are consulting with an orthopedist about the possibility of surgery), and he was still sound asleep until I put him on the x-ray table. Then he was about as happy to be woken up as you would expect.

By this time, I was really starting to feel awful (sore throat, sinus pressure) and Grayson was crying, tired and throwing up. Lovely. The next three days were miserable; I was sick, Charlotte was sick, and Grayson seemed really sick. Moms and kids should not be allowed to be sick at the same time- misery! Ryan was at the ranch getting our stuff that we have been storing, so he managed to avoid the germs for a few days, but came down with symptoms yesterday. Grayson actually got a fever of 102 Saturday, and we normally would take him to the ER for that, but I was feeling so awful and we knew from one of our Mito friends that the hospital was full and we would likely have to wait for hours for a room if he was admitted. Thankfully, we were able to get his fever down at home and managed his other symptoms pretty well.

I think we are finally getting past it, thank goodness. With Thanksgiving tomorrow with Ryan’s family and a weekend trip to the ranch planned for Friday, we don’t have time for any more germs!

In other news, the house is coming along. We got horrible news today that we need  new A/C and heating units (someone, please stop the bleeding!) but other than that, things are coming along. Our new carpet was installed Friday, so the house is dog-pee smell and stain free. We are almost finished painting, and Grayson’s bed was delivered today! I am so excited to start decorating his room- this move, and this house, is for him.

Well, I really did intend to make this post a little more interesting and post pictures, but it’s been a really, really long day- I was home with both kids all day long and am completely worn out. I hope all of you have a wonderful Thanksgiving tomorrow!

Dear Charlotte,

Well, here we are- double digits. Just as I predicted, each month is flying by faster than the last, and every time I turn around, you are growing and learning some new amazing skill.

You are busy. Unless you are asleep, you are moving, exploring, playing, talking, eating, or pulling up on something. You have no moments of chilling out or being still, which is both hilarious and exhausting. You are still very much into getting in your hands things you know are off limits. Grayson’s medical supplies (actually, anything to do with Grayson, including his face and hair), cell phones, remotes, books, and paper are among your treasures you are bound and determined to grab.

It thrills me to watch your personality and interests develop. You are starting to be a little interested in books. You usually won’t sit through and entire story, but will pay attention for a few minutes as we read and point to pictures. You really like balls and playing catch/fetch with yourself- so funny. You still adore music class and love playing the drum and the bells.

You love to talk and are becoming quite the chatterbox. You have mastered “Bye bye” with a wave when we are leaving, and have discovered the sound your mouth makes when you brush your lips with your hand while you are talking. Again, hilarious.

Just this past week, you have started being a little clingy and fussy when I leave you in the nursery or mothers day out. I wouldn’t call it separation anxiety, because as soon as you get settled in with your friends and teachers you are totally fine, but it is nice to know you recognize your momma is leaving you for awhile! I know you know I will always come back and I am so, so happy that you adapt so well to different situations without me.

You are still doing really well with solid foods, although I am starting to see you get a little pickier about foods (i.e. vegetables). Get over it kid, vegetables are here to stay! You are still nursing 2-3 times a day and taking bottles throughout the day. There have been several times over the past month where it seemed like you were losing all interest in nursing and were weaning yourself, but then you proved otherwise a day later. I’m letting you totally decide when you are ready to be done; it’s been a wonderful, healing experience for me, but now it’s all about you and your needs, not mine.

You weigh 19 pounds, 4 ounces, and are in size 9 month clothing and size 3 diapers. You still have zero teeth, but have no problem chewing your food with your gums. You go to bed usually between 6:30 and 7:00, sleep until about 5:00, wake up to nurse, and if I’m lucky go back to sleep until about 7:00. Naps are hit or miss due to our on-the-go schedule, but on average  you nap 1.5-2 hours in the afternoon and about 30-45 minutes in the car in the mornings.

This month, we will be moving into our new house! Mommy and Daddy have been busy getting everything ready for our family’s new place. You have a pink bedroom waiting for you, and when I say pink, I mean PINK! I hope you like it and it will be a smooth transition for you. You also have your first Thanksgiving coming up next week- I can’t wait to see you dig into all that yummy food! My biggest thanksgiving this year is that you burst into our lives with spunk, energy and sweetness 10 months ago. It’s only been 10 months, but I cannot imagine how I ever lived without you, my sweet girl. I love you more than words can say and am so, so thankful that I get to be your mom.

Love,
Mommy

Friday morning, Grayson had an appointment with Dr. K, our Mito specialist. We left with no new prescriptions or tests ordered, but it felt like a “big” appointment. I’ve been thinking about it all weekend, and want to write the details down for reference later.

First, we met with the social worker who works in the office. She is wonderful. She truly cares about the patients and families and is willing to do whatever she can to help. She helped get the ball rolling to order Grayson’s new hospital-type bed and made changes to our letter of medical necessity quickly. The bed should be delivered in the next few weeks- I’m excited to get it into Grayson’s new room and get him out of a crib and into his “big boy” bed! Friday, we talked to the social worker about possibly getting Grayson a wheelchair to replace his medical stroller. I’m looking into whether or not this is something we need to do right now.

As you know, Grayson did not get into the clinical trial for Epi-743. Last I heard from Texas Children’s (our local site for the trial) there were questions about Grayson’s MRI. Dr. K did give us an explanation as to why, after all this time, Grayson still is not on the drug. Basically, Grayson does not have “classic” Leigh’s Syndrome, which we knew. His brainstem and cerebellum are not damaged, but he has white matter disease, demyelination on the majority of his brain, and all the characteristics of the syndrome. Read this. This is Grayson, on paper. Dr. K is confident Grayson does have Leigh’s, but for clinical trial purposes, TCH would say that he does not. It’s so frustrating. She did say that the day the FDA approves the drug, we will have a prescription in hand.

Of course, we still do not have genetic confirmation of Grayson’s disease either. Our last real consideration of genetics was almost 10 months ago, just days before Charlotte was born, when we saw the geneticist who said for now we are at the end of the line for genetic testing. Well, now there’s a new test that will test about 100 more genes than we have before. So Grayson and I had our blood drawn Friday, and Ryan will go tomorrow. We will get the results in 4-6 weeks; I’m not optimistic or hopeful we will get any amazing insights, but hey, what’s a vile of blood?

After this, we talked about Grayson, and the impact the disease is having on his life right now. I asked Dr. K what her opinion is of Grayson’s mental capabilities. His interests are so narrow, and he is calmed by the familiar and things that have been familiar since he was a tiny baby. And then there’s his stiff little body- the body that betrays him more and more every day. The body that jerks and trembles and vomits and seizes. But what is going on in his brain? My fear was that Grayson was “trapped” in his body- that his brain was capable of so much more than his body was allowing him to express. Dr. K gently told me she cannot know for sure, but she thinks his cognitive level is that of a baby, and this is why baby toys and calming techniques work for him. His brain is grossly abnormal on an MRI scan- and this is hard, scientific evidence of what we see every day at home.

This insight both breaks my heart into a million pieces and gives me great comfort at the same time. I’m comforted that Grayson has no idea what he’s missing and most likely isn’t frustrated trying to express thoughts or emotions. I’m comforted that when he’s lying in his bean bag chair, sucking his thumb listening to Veggie Tales for hours, that he’s content and satisfied. I’m comforted that we know how and are able to keep him comfortable and content.

But still- heartbreaking. This just isn’t how it’s supposed to be for a 3 year old little boy. He’s supposed to be growing, and changing, and learning, not stuck in an infant state forever. And of course we will never stop giving him opportunities to learn and develop- he will continue with school, therapy, and family activities as long as he is able.

So yeah, a lot of big, heavy topics discussed, but no big changes in care. And life goes on.

I really intended to write more “thankful” posts this month, and really have been making a conscious effort to be grateful for all that I have in my life, because I am abundantly blessed. But every time I’ve sat down to blog about these things I’ve just stared at a blank screen and nothing of substance comes out of my brain and onto the computer.

Since I wrote about being thankful for Charlotte last week, I’ve been thinking about what to write about Grayson. And that shouldn’t be so complicated, but it is.

I am thankful for Grayson, and a lot of things surrounding his life. All of these things I have written about before. I’m thankful Grayson made me a mother three years ago. I’m thankful that I am a better, more compassionate and empathetic person because of his struggles. I’m thankful for wonderful friends I have met because of him and our circumstances. I am extremely thankful that he is still here with us.

I am not, however, thankful for his disease. I HATE Leigh’s. I am not one of these people who wouldn’t change things if I could. I would trade it all if Grayson could be healthy. Leigh’s has robbed Grayson of everything; he used to have such a light, such a sweet, cheerful personality, and that light has dimmed to almost nothing. He doesn’t smile at me any more unless I’m singing to him, and he has no interest in anything “new”.

I’m struggling a lot with Grayson right now. Day after day is the same, and he seems to be slipping slowly away as the weeks and months fly by. My role as his mom is keeping him comfortable and safe, holding him, hugging and kissing him, and telling him I love him. And that’s about it. It’s a lot of work, but then it’s not. It’s mostly emotionally exhausting. I wish there was different work. I wish I had things to work on like discipline, potty training, teaching shapes and colors and letters, and figuring out his interests. I just wish for so many things that should be different for him.

I am thankful that for the most part, we are able to keep Grayson comfortable and happy in his own world. He loves school, where he spends the majority of his day, and at home seems content to lay in his beanbag chair or in his baby gym and listen to his music. I’m thankful that he is able to be included in our family’s activities, and that he is always surrounded by people who love him. I’m thankful that he still wants to be held, because holding him helps me keep connected to him.

I adore my little boy, and I am so, so grateful that I am his mom. I hate his disease and everything he is missing out on, but I have to hold on to the belief and hope that there are bigger purposes for Grayson’s life than I am capable of understanding. I’m thankful for that hope.