Happy New Year! Our holiday season turned out pretty great- we spent a ton of time with family, ate a lot of food, celebrated the birth of Jesus, and gave and received some pretty awesome gifts. But I’m glad it’s over. I’m ready for routine, back-to-school, and the promise of a fresh start.

2014 was a decent year. Our 2013 was so overwhelming and tumultuous, and it was nice to have a year that didn’t have so many crazy emotional extremes. We’ve been settled in our new house for almost a full year now, and for the most part, I’m content living here. It’s not big, new or fancy, but it meets our family’s needs, and that is just what we need at this point.

I’m so thankful that Grayson had a good year too. I’m not sure how many times he was in the hospital in 2014, but it seems like it was less than last year, and each hospital stay he bounced back fairly quickly. I’ve accepted that it’s when, not if, he’s in the hospital the next time, and we have the hospital routine figured out. It’s disruptive for sure, but we know what to expect.

Charlotte continues to light up our lives and cause me to fall asleep in bed at 8:40 pm on NYE (true story). She is hilarious, sweet, so smart, and exhausting. And she never stops talking. What a blessing it’s been this year to be with her as she’s transformed from a baby to a toddler. Her phase of today was “Happy Birthday New Year”!

I learned a lot this year. I really believe I’ve made small steps towards understanding and embracing people who are different than me, and I want to continue to try and look at issues from all different points of view.

If I were to choose a word I want to live by for 2015 it would be “brave”. I want to tackle my life with excitement and anticipation, not fear. The fear of the unknown and “what ifs” keep me up in the wee hours of the night far too often. I want to make decisions and feel confident in them, and not spend so much time fearing the reaction of others to those decisions.

We have some exciting things planned for the coming year and I can’t wait to see where it takes us.

Happy 2015!

Every year, my dad Santa Claus writes the kids letters. These letters are one of my favorite parts of Christmas. Enjoy!

Santa

 

 

Dear Charlotte,

Oh my Charnado, here we are- you are almost 2! When people ask me how old you are these days, I always answer that way- “Almost 2”, because you are most definitely the embodiment of a two year old. You are silly, sweet, defiant and frustrating at times, and full of endless energy. Daily, you make me question what the heck I am doing and doubt my abilities as your mother, yet fill me with so much joy and pride. I am so proud of you. You are incredibly smart, verbal, and caring. I love you so, so much.

At 23 months:

• I’m not exactly sure how much you weigh because I forgot to weigh you before we left for the ranch yesterday, but I think you’ve lost weight since last month. You gave up your bottle cold turkey about a month ago and have slimmed down noticeably. You also have way less wet diapers, but are still drinking plenty of water. 
• Since you slimmed down some, you are mostly wearing 24 month clothing, especially pants, and 2T tops. You are still in size 5 shoes and size 5 diapers. 
• You now have a mouth full of teeth. 
• You have developed a love for art, which makes me so happy. You spend a lot of time each day coloring with crayons, and your teachers tell me you are always the most enthusiastic about the craft projects you do at school. I can’t wait to see what Santa brings you this year- hint, hint. 
• We have developed a new little bedtime routine since you gave up the bottle. Mary (Grayson’s nurse) gives you a shower, then you and me go upstairs and read a few books (You have The Very Hungry Caterpillar memorized and can almost quote it word for word). After that we talk about our “super fun day”- we go through all the things we did that day, and then we say your prayers and sing a few songs. You still get very upset with me most nights when I actually put you in your crib, but after a few minutes of screaming, settle down and go to sleep. 
• You say the funniest/cutest things. A few of my current faves:
• You think all pants are “jeggings”. You were wearing jeggings one day and I told you that’s what they were and it stuck in your head. The greatest is when you point out “Daddy’s jeggings”
• When we ask your name, you say “Baker. Charlotte Baker”. We also have Mommy Baker, Daddy Baker and GG Baker in our house. 
• You love Daniel Tiger, and so do I. It’s really nostalgic to me, since I loved Mr. Rogers Neighborhood as a kid. I probably let you watch way too much of it a day, but Daniel is so sweet and has such good lessons, I’m not too worried about it. 
• Your favorite Daniel Tiger is the potty episode. You love to talk about the potty, washing your hands, wearing underwear and no more diapers, etc. but have no interest in actually sitting on the potty yourself. 
• You are starting to be really particular about certain things and have meltdowns when they aren’t done to your specifications. Your water cup, for example- aaaaa! We have more “arguments” about your water than anything else. You beg for animal crackers all day long. Oh, and your gummies and vitamins. You get 4 gummies and 1 vitamin a day- THAT’S IT!

Your birthday is a month away and I don’t know what we are going to do to celebrate, but celebrate YOU we will. Happy 23 months sweet girl, and Merry, Merry Christmas!

Love,
Mommy

This season is full of such conflicting emotions. I remember as a kid hearing that Christmastime is a really, really hard time for some people, and I didn’t understand. My childhood Christmases were magical, and I think my parents did an amazing job of balancing the fun of the season (presents, Santa, parties) with the spiritual focus of celebrating Christ’s birth. I remember specifically one year coming out of Christmas Eve service and being absolutely certain I saw Santa’s sleigh flying over the cross on top of our church. I want this for my kids too- I am absolutely pro-Santa, but I want him to always be flying over the cross on Christmas Eve. And perhaps I’m doing a decent job of that already- I’ve been talking about the nativity with Charlotte, and she knows the story, and the characters, but anyone with a beard is still “Santa- Ho Ho Ho”, so I’m letting Santa hang out by the manger as long as he wants.

As an adult, I now understand why Christmas is hard and isn’t all magical. Today, I’m less stressed (shopping is done- sigh of relief) and more sad. I’m not depressed- I’ve dealt with that and this is different- but I am sad. I’m sad for my sweet Grayson, that even though he is present for so many Christmas and family activities, he misses out. He misses out on so, so much. Grayson won’t be with us at church on Christmas Eve- he’ll never hold a candle and sing “Silent Night”. He’ll be at home asleep while we’re opening gifts Christmas Eve with Ryan’s family. We’ll never have that “ideal” Christmas morning, where all our kids run out to see what’s in their stockings and under the tree, and just like so many other things, I’m having to grieve the loss of that dream. And yet, he’s here, and I never want to take that for granted. A few weeks ago we saw his doctor who brought up his latest brain MRI. His disease has progressed- the damage to the white matter in his brain has increased since last year. Grayson’s body, his brain, is failing him, and all we can do is love him. No perfect present or ideal Christmas morning is going to change that.

We’ve had some incredible, unexpected blessings that have shown up in our mailbox and inbox, and people’s generosity humbles me with gratitude. Thank you to our friends who have shown us such love this month and put some of the magic back in Christmas.

This next week, I’m going to make every effort to enjoy this time of year-  to sing “Happy Birthday Baby Jesus” with Charlotte, snuggle with Grayson, and laugh a lot while opening presents with family.

Merry Christmas everyone- I hope yours is magical.

We had a magical Saturday, and I’m still tearing up when I think about it. A few weeks ago, Grayson was invited to attend the United Airlines Fantasy Flight to the North Pole. United invites children with chronic illnesses and their guests on the once-a-year flight, and every detail was perfect. 

We arrived at the airport yesterday morning and were greeted by an army of volunteers and an over-the-top decorated check-in area. We checked in, got our boarding passes, went through security, and made our way to the terminal. We could hardly take even a few steps without being greeted by another character. Everyone was SO sweet and just doted on Grayson. 

The North Pole had decorations, food and drink, a choir, orchestra, lots of presents, two Houston Texans, and of course, Santa! Poor Grayson barely made it back into his wheelchair before he was sound asleep. Even though he was asleep, we still got a good picture with Mr. and Mrs. Claus. 

Santa spoiled Grayson (and Charlotte, they gave us two of everything) with sweet gifts. 

Well, it’s been nearly a month since I wrote a real post. We’ve had a lot going on, but I just haven’t been motivated to write. I have a lot on my mind, but not much I can write about here. I’ve been hurt by a few comments in the past few months, and it’s made me a little gun-shy to write about certain things. And I am completely aware and accept that writing a blog opens me up for criticism and people’s opinions, and it’s hard to reconcile the two- wanting (and needing) to write, but also protecting myself and my confidence in our family’s decisions.

The thing about honesty is it sometimes leads to really awkward situations. I’ve been making a conscious effort to be more honest with people, meaning, instead of making an excuse, I will tell the real reason why I can’t do something or am going to do something else. Several times, this has backfired- nothing major, but just some uncomfortable conversations or slightly hurt feelings. And I think that maybe it just would have been better to tell a white lie. Sigh.

Finances are particularly hard to be upfront and honest about. This time of year is SO expensive, and incredibly stressful for me. I dread December. Gift giving is not my love language (neither giving nor receiving) and having little extra money to buy gifts makes the whole thing really hard. And being honest why I can’t attend certain events I think leaves me and the other person kind of embarrassed. I wish “I can’t afford it” didn’t have to be such a shameful statement.

But the holidays aren’t all bad. We’ve been singing Christmas songs in the car (my radio is broken and we can’t afford to replace it, ugh) and it’s so cute to hear Charlotte learning my favorites and singing along. We actually decorated the house a few days before Thanksgiving, and that feels good to actually have done it and to see the ornaments I’ve collected over the past few years. I have A LOT of dog ornaments- ha ha. We have a little nativity and I’ve been talking to Charlotte about the Christmas story. Somehow, she’s got it in her head that both Mommy and Santa were at the birth of Christ- who knew?! We have an Elf on the Shelf but he’s still in his box- do I really want to start that craziness when my kid isn’t even 2 yet? I took Christmas card pictures the other day, and I got a great shot within about 3 minutes. No stress. Instead of trying to pose my crazy toddler and kid that can’t sit up on his own, I threw them in matching Christmas jammies and had them cuddle in the bed. Precious. And done. I can’t wait to show you.

I’m struggling with presents for the kids- with the idea of being fair. I’ve bought Charlotte several things- not a ton, because the last thing we need is more clutter in here, but some things I think she’ll really like a play with. She’s really into coloring right now, so I got her an easel, art supplies, and of course, stickers. I also got her a stroller for her baby dolls, a purse, and I think I’m going to get her a potty seat (yikes, here we go). For Grayson, the only thing I’ve bought him is a little toy electric piano. I’m thinking of getting him a guitar too, because that’s what they tell me he likes the best in music therapy. But after that, I’m out of ideas. I can’t afford to buy him stuff just for the sake of giving him presents, but I feel awful that his Christmas morning pile is going to pale in comparison to his sister’s. Logically, I know it’s just the reality of his situation, but it still hurts, and makes me feel guilty. Did I mention gift giving totally stresses me out? There’s some honesty for you.

Anyway, switching topics, here’s a few other updates…

Grayson had a tube change today. The best thing I did was schedule the procedure before the tube broke on its own and forced us to the ER. He is participating in a research study for Mito patients on anesthesia- so more than likely the drug he got today was something different than his usual protocol. I was a little nervous, but he did great- he was actually awake by the time I got back to the PACU- that has never happened before. I didn’t realize that being in the study requires a follow up with his doctor tomorrow as well as blood draws tomorrow and Saturday- ugh. 

He has been on oxygen at night for several weeks now. His nurse reports that he’s sleeping better on it (although on the nights she isn’t here, that doesn’t seem to be the case) and he hasn’t had any seizures since we started, so I guess it’s a positive thing. He hates the nasal cannula though, and even fights me putting it on him in his sleep. Overall, Grayson is doing really well right now. He’s just the sweetest, cuddliest little boy and he loves to laugh. And I do think he’s happy. And we are so excited about a special opportunity he has on Saturday- I will post more about that this weekend!

We got rid of Charlotte’s bottle this week- cold turkey. Eek! Last weekend at the ranch, she refused to drink her bottle because the brand of milk was different than we have at home. So when we got home, after 3 days of no bottle, I asked her if she wanted to say Bye Bye to her bottles. She agreed. She hasn’t made one peep about them until tonight when she requested one. But I told her that remember, we said Bye Bye to the bottle, and that was ok with her. She is having a lot of trouble falling asleep though. We do a story, talk about our day, and prayers and she’s fine until I put her into bed. Then screaming. I’m totally letting her cry it out because the last thing I need to start is bedtime shenanigans. Hopefully this off-and-on screaming for an hour won’t last too long. It’s so weird to me that she is slowly letting go of her “baby” things. She’ll be two next month. Two!

I hope you all are doing well and that these last days of 2014 find you happy, healthy and as stress-free as possible.

Dear Charlotte,

1. There is an inverse relationship between the amount of time you spend on a meal and how well your child eats it. And no matter what you make, Annnimaaaaal Craaaaaackerrrrrsss will be what she really wants.

2. You will feel like the world’s best parent and just know your daughter is destined for greatness  when her church nursery teacher tells you that she’s “really good at following directions”. Seriously, it will make your day. For about three minutes. Until she hits you in the face when you tell her to let go of her stuffed dog so you can buckle her carseat.

3. Daylight Savings is an evil, evil monster that will steal your good sleeper and never give her back. And you will never sleep past 5:30 AM again. The End.

4. Your child will be the one laying down on the stage during the preschool program. It’s ok. No one’s looking at her but you- everyone else is watching her own kid.

5. Cheerios spilled on the dirty driveway is a National Emergency and every single one must be painstakingly picked up, put back in the bowl, and consumed. The same thing happens 10 minutes later in the living room. Meh. Mom will pick them up at some point.

6. You will find stickers stuck to everything. Everything. And a torn sticker is another example of a National Emergency.

7. The more time and effort you spend cleaning the house after the kids go to bed, the faster (and earlier, see #3) it will look like this the next morning:

8. Toots are really, really funny. At least you can teach her to say “Excuse Me” when she’s finished laughing about her ability to pass gas.

9. You will have every intention of being a really good parent who keeps her child rear facing until at least two. Because, SAFETY. But then eventually hearing shrieks of protest and begging to sit in brother’s (forward facing) carseat every minute you are driving will make you incredibly tense and stressed and you realize that it would probably be safer for everyone if you turned her around at 21 months. And then you will feel guilty for approximately 0.037 seconds until you turn around and see how happy she is. And how quiet it is.

Also, forward facing her at 21 months has got to be safer than her poor baby who hangs out in the engine.

10. You will simultaneously want to sell her to circus and have ten more just like her.

Yesterday, Charlotte and I stayed home while Grayson was at school. We didn’t get in the car or even leave the house once until it was time to pick him up. Honestly (and maybe I should be ashamed to say this), I can’t remember the last time we did this. We don’t stay at home. I am very intentional about making sure we have something, anything, to do to get us out of the house each and every day.

But yesterday, my girl and I both needed a day with nothing on the calendar. Since Grayson’s last hospital stay, we’ve both been out of sorts. Tired. Emotional. Earlier in the week, Charlotte woke up from her nap hysterical. Now yes, she is, in general, quite a dramatic child, but she is never inconsolable. She was inconsolable. She screamed, kicked, pinched, and arched her back for a good 30 minutes and I was genuinely concerned there was something really wrong with her. And I also found myself somewhat envious of her.

When you are a toddler, it’s generally accepted and expected that you are going to lose it every once in a while. You can scream  your head off until you make yourself vomit (my children both looooovvve to vomit even when they aren’t sick, lucky me), throw random objects at your mother and dissolve in a mess of tears on the living room rug. And then you move on, with your reputation as a sweet, adorable little human still intact. On the other hand, if I behaved the same way for having probably similar, if not identical emotions as my tantruming toddler, I probably wouldn’t have a tantruming toddler to parent for long. But I sure wanted to throw an enormous fit like she did.

All this to say that Charlotte and I have both been an emotional mess for the past few weeks and needed a day off.

About 9:00 am she had dragged every tiny, clutter-y toy we own into the living room and emptied her ball pit too. I had been in the kitchen emptying the dishwasher and came in to check on the little mess-maker. She looked up at me from her place on the rug, pointed down and said, Mommy, Sit.

I sat down amongst a sea of blocks, cars and colored plastic balls.

“Mommy’s orange ball”, she said and handed it to me. “Mommy’s red ball. Mommy’s green ball.”

We played with the balls, naming the colors. We counted the blocks. We sang “Happy Birthday” to everyone we know (her favorite song right now). We cuddled.

I wish I could tell you that this was a huge wake-up call for me, a lesson learned in putting down the laundry, staying home more, and embracing every fleeting moment with my kids, because they grow up so fast and this stage will be over in a blink. And yes, I did have those thoughts. But the whole situation made me sad, too, because I realized in four years of motherhood I haven’t done much stop-what-I’m-doing on-the-floor playing, and it feels odd and sort of awkward. I feel like with Grayson, I missed out on this huge chunk of what being a mom is about, and now I’m no good at it, and cover that up by staying busy.

I’m a good mom- I’ve got four years of keeping a kid that has every medical odd stacked against him alive and thriving, relatively speaking. I can rattle off a list of medications and dosages with accuracy that always impresses medical students. I’ve learned medical equipment and to navigate the world of specialists, therapists, and insurance. I can sing a song to my daughter while my son is violently throwing up in my hand. I could get to the ER in my sleep and am really good at remaining really calm in very stressful situations. I’ve got drop off, pickup, playdates and our *calendar* down. I’m good at juggling the go-go-go. I love and adore my kids and love being with them. But when I’m forced to take a break, and just be, I feel inadequate.

Busyness and activity makes me happy, but it also makes me tired.

Mommy, sit.

I love that Charlotte is so social and thrives in all kinds of environments, but I also want her to feel safe and love being at home.

Mommy, sit.

I have limited time with Grayson, and holding him and singing a fifth verse of “Down By the Bay” and making him giggle is more important than cleaning that countertop.

Mommy, sit.

I cherish my friendships but some days I do need to spend all my energy and all my emotion on my family.

Mommy, sit.

And it’s true, it will all be over in a blink.

Mommy, sit.

Dear Charlotte,
This letter is a few days late because it’s been a crazy, chaotic week. Just hours after taking your 21 month pictures, we had to take Grayson to the hospital and he was there until yesterday afternoon. You were such a little trooper, staying with many different people this week- all who love  you to pieces and took such good care of you. I missed you so much though, and hope we don’t have to do that again for a really long time. Today when we dropped Grayson off at school, you started crying and saying his name- I think you really missed him too.

I can hardly believe you are already 21 months- just three months away from turning two. Wow! Your second year has completely flown by.

At 21 Months you:

• Weigh right at 26 pounds
• Sleep 12-13 hours a night and take one nap, usually about 2 hours.
• Take 3 bottles of milk a day- at bedtime, naptime, and early in the morning if you wake up before I’m ready for you to.
• Wear size 24 month and 2T clothing, and size 5 shoes
• Have completely crazy hair, and I’m trying to figure out how I’m supposed to style it in this awkward, in between baby and normal hair stage. The sprout ponytail on top of your head is our go-to for now.
• Love school and I’m amazed at how much you are learning even just going one day a week
• Can count to 10, say (most of) your ABCs, know your colors, animal sounds and the names of a ton of things I had no idea you knew
• Say the most adorable things. My favorite is when you randomly say “Bless you, Mommy”. You also say “Yes, please” and “Thank you” pretty consistently and in the right context.
• Finally have a security object. About a month ago, we took care of your cousin Theo’s dog Milton for a few days, and they gave you a stuffed “Milton” as a thank you. Now, you won’t go anywhere without Milton. He sleeps with you, rides in the car with you, and has to watch you eat your meals and take your bath.
  

Charlotte, you are just the best. Thank you for making me laugh and being so, so sweet. I love you.

Love,
Mommy