2013 has been the hardest year of my life in all aspects: physical, emotional, financial, relational, and spiritual. It’s been a roller coaster of one incredible high but many, many lows. I’m really hoping that this particular ride is now over and I’m praying for a calm, peaceful, uneventful 2014.

First, the high.Twenty days into this year a little girl burst on the scene and instantly fit right into our family like a missing puzzle piece. Any doubts I had about being able to love a second child as much as my first completely vanished within those first few hours of holding my daughter. Each and every day, Charlotte continues to heal the part of my heart that was sliced right open in my first two years of parenting. Charlotte is the embodiment of God’s grace; she is a living, breathing gift- a gift I needed this year more than anything.

In the midst of the excitement of welcoming a new family member and the turmoil of unexpected events, I’ve been watching helplessly as Grayson, my sweet boy, is slowly slipping away. We started off the year with several bad seizures and illnesses resulting in hospitalizations; in fact, it wasn’t until July that we got a month’s respite from a hospital stay. In late April, I dropped my boy off at school and headed for a day at the beach. Little did I know, that afternoon a huge seizure and serious illness would suddenly and violently steal so much from my boy, and we were lucky it didn’t steal his life. Since that day, Grayson has stopped responding to his name or to a smile with one of his own. He no longer can push himself up to a crawling position, and he continues to lose control of his head. His body is awkward, heavy and incredibly stiff. He vomits 4 or more times a day and cannot hold small objects in his hands. Perhaps in some way the other circumstances of this year have been a good distraction, because the tragedy of what is happening to my son right in front of me is mentally and emotionally devastating.

I’ve spent a good part of this year angry. Angry about Grayson and the raw deal he has in life. I’ve been faced with secrets and broken trust, behavior from people that I just can’t make sense of, and circumstances beyond my control that leave me wanting to bang my head in frustration. I’ve been angry at myself- questioning and regretting lots of decisions made that I can’t take back, and embarrassment and shame at my own selfishness and apparent inability to forgive, accept what is, and move on. I’d like to say I’m moving past the anger and entering 2014 with a clean slate, but it’s not true. I’m still pretty pissed off about a lot of things, and some of these things just aren’t getting better.

I’ve heard true character is revealed in the hard times. I really don’t know what this year says about my character. In some ways, I think I’ve handled a lot of our challenges with grace, but in others, not at all. I panic about money and then find it impossible to be generous, even though I’ve been given so much. Some days I look at Grayson and feel such despair and hopelessness, and just want to scream at God, the universe, and everyone in the world who has only healthy children. I’m tired, drained, and feel like I have nothing to give to anyone, including myself.

My hope for the coming year is peace. I want peace for myself, which I know includes forgiveness. I want peace and comfort for Grayson. We are planning a surgery for Grayson in January that I pray will improve his quality of life and our ability to care for him. I want peace for our new home, our marriage, and our finances. I want to celebrate the incredible first year of my daughter, and enter into her toddler years with confidence and excitement for all she is going to learn.

Goodbye 2013. You blessed me, cursed me, and changed me. You will not be missed. Hello, 2014. Please be kind.

Well, it looks like we may actually be moving in a few days. If you remember, we closed on our house in late October, but it’s been two long months of repairs and rehab, most of it unexpected. We were lucky to have childcare the last two days, so Ryan and I spent yesterday and today unpacking and putting things in place. This weekend, we are hiring a handyman to finish the painting and repair the hole in Charlotte’s ceiling where the new heater/AC went in a few weeks ago.

Grayson’s room is almost finished. I can’t explain how much I love it. The walls and built-in shelves are filled with pictures, books, and special gifts given to our special boy. His new bed is ready to be slept in, and we have a bed right beside it for his nurse. His closet is big enough to keep all his medical supplies, and he has his very own bathroom. I will post pictures soon, but I am so excited for Grayson to have a personal, functional room again.

We are moving to a significantly smaller space, so one of the biggest challenges has been purging unnecessary stuff. As it turns out, we have a lot of that. Today, I finally resigned myself to the fact that I will probably never be a size 2 again, and filled 3 huge trashbags of clothes to donate. It actually felt really good to haul those bags downstairs. Letting go, moving on. Another thing we discovered when unpacking our kitchen stuff is we are drinking glass hoarders, particularly wine glasses and beer mugs. Since at this particular point in time the sippy cup is way more utilized in our house than the beer mug, off to Goodwill 90% of those (as well as quite a few extra dishes) went.

This move is definitely bittersweet. I don’t particularly like big changes, and while I’m excited, I’m also sad. I know it’s not ideal to live with one’s parents for an extended period of time, but it really has been nice. My mom has been a huge help with the kids, an emotional support to me in what has been the hardest year of my life, and is just good company. I know I’m going to be lonely without her around. And I’m worried about Charlotte and my mom- those two are BFFs. I think they are both going to have withdrawals from each other. I don’t know what Charlotte is going to do without her fun Grammie around to spoil her and I don’t know what my mom is going to do without those constant sweet baby snuggles!

There’s still a lot to do, but we should be totally moved in about a week! New  year, new house, new beginnings!

Merry Christmas! We’ve had a great few days with family and I’ll share more in a later post, but here are Grayson and Charlotte’s annual letters from Santa, always a highlight of our Christmas.

I think that God may have put you and me on this earth for the same reason.  You know, the N. Pole is not the easiest place to live and work, and I am not the youngest or fittest person to be lifting all of those packages.  I have come to realize, however, that God made me a part of Christmas to remind us all that

I can see that power in your mother and father.  Every day you are dressed and groomed.  Every day you are delivered to school.  Every day you are sung to.  Every day you are loved. The fact that you can’t do those things for yourself does not stop them from happening, because it is the will of the God who made us that “my grace is sufficient for you”. 

Santa

I know that the coming year will again be a big one for you and your family.  God puts children in families so that they may grow in wisdom and stature and has given you a special one for that purpose.  It is my privilege to watch you grow and especially to see you smile.  Merry Christmas.

Love,
Santa

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?