Dear Grayson,

Yesterday, you turned three and a half. It was a beautiful, sunny day and we spent the afternoon outside. You were tired, but seemed to enjoy it. I struggle with words to write to you, because there is so much to say, yet really not much at all. The two things that keep coming to my mind are “I’m sorry” and “I love you”.

I’m sorry your life is so hard. I’m sorry you can’t walk, or talk, or eat. I’m sorry you struggle every day with vomiting. I’m sorry you have to take so much medicine and are attached to a pump all day every day. I’m sorry you have to be in the hospital every time you get sick. I’m sorry you get so tired so easily. I’m sorry you can’t suck your thumb anymore. I’m so, so sorry.

But I love you, and so do so many people. And I love taking care of you. I love holding you, cuddling with you, and tucking you into bed. I love singing to you and making you smile. I love when our family does things and goes places and you get to come. And I will continue to love these things, however long you are with us.

You continue to teach us so much with the testimony of your life. You teach me I can’t plan for everything, control most things, or predict the future, but I can live and enjoy each day for what it is: another day with you. You teach your Daddy patience, and how to love completely and unconditionally a son who isn’t at all who he had pictured in his mind before you were born. And you teach  your little sister empathy and gentleness; she adores you and wants to take care of you.

I am so very blessed to be your mommy, Grayson. I love you to the moon and back.

Love,
Mommy

Dear Charlotte,

My sweet, sassy little girl- today you are 14 months old and it is the first day of spring! It’s a beautiful day today and I hope we have many more of these to come so we can start having fun outside! Every day, I marvel at the little person you are becoming, complete with  your own individual personality and opinions. Oh, your opinions. You have no shortage of those. However, along with those opinions comes a shortage on patience. You want what you want NOW and absolutely detest hearing the word “No”- a word that makes you melt into a puddle of tears and screams.

Yes, we are struggling with some difficult times, but those are nothing compared to the sweet moments that fill the rest of our days.

Charlotte, this is you at 14 Months:

• You weigh 21 pounds and are in size 18 month clothing, size 3 shoes, and size 4 diapers.
• You have 4 teeth, although the second top middle tooth is only about half way in.
• Have the sweetest little curls.
  
• You have transitioned from formula to almond milk and LOVE it. You suck it down and beg for more. You are still drinking your milk from a bottle, but weaning you from that is another challenge for another day. You are also nursing about 3 times a day.
• Your favorite foods are strawberries, oranges, black beans, waffles with peanut butter, yogurt, avocado, cheese, and crackers. You think that if I gave you some of my morning coffee that you would love that too, and throw daily tantrums when I won’t give in to your begging.
• Go to bed around 6:30 pm and are sleeping through the night most nights, after a few weeks of struggling with wake-ups. You are also napping really well during the day.
  
• Crawling and being carried are still your preferred methods of getting around. You are slowly but surely figuring out how to walk- you take about 4-5 steps on your own but then plop yourself down to crawl to your destination. The anticipation of you learning to walk on your own and watching you figure it out has been fun.
• You are learning new words every day, and can mimic most everything we say.
  
• Can identify the body parts nose, eyes, mouth, ears, and (Mommy’s) belly button.
• You are a social butterfly, and love going to school, church, and play dates to see your friends and play with new, exciting toys.
• When we say “I love you” you give hugs, kisses and blow kisses with a very dramatic hand motion and “Mmmm- ah”

Charlotte, you are the funniest, sweetest, most beautiful little girl. I love you so, so much- Happy 14 months!

Love,
Mommy

The other day I was over at my friend’s house and her little boy was singing
“The B-I-B-L-E”. I laughed and told her that Charlotte had been babbling and that it sounded just like that song, but I didn’t really think anything of it. But then my friend told me they sing the song a lot at preschool (our kids go to the same school) so she probably was indeed singing it. Plus, it’s a Veggie Tales song, so Charlotte has heard it approximately 463,000 times.

It’s stuff like this that just amazes me- that she learns a song at school, and remembers it, and then sings it at home. Wow!

So hear ya go: “The B-I-B-L-E” by Charlotte, 14 months tomorrow.

Grayson is on Spring Break this week. He was in the hospital half of last week (while school was still in session) and Ryan was on break last week as well. We time things really well in this family, obviously.

Anyway, is it really only Tuesday? Because this Spring “Break” feels exactly the opposite of a break to me. We’ve actually spent a good chunk of the past two days out of the house. When I take both kids anywhere by myself, it mostly feels impossibly difficult, but impossibly difficult actually beats staying home and going stir crazy, so out we go.

Yesterday, I took Grayson to PT and Charlotte tagged along. The PT gym is a huge room filled with balls, toys, and things to climb on. We told Charlotte to go and have fun. She wasn’t impressed- she preferred pulling Kleenex out of the box and attempting to steal the therapist’s evaluation paperwork, pen and cell phone.

Today, we went to Bible study, which is our normal Tuesday routine. Charlotte goes to the nursery, but I figured Grayson could tag along with me and listen to his headphones; I thought, he’ll be fine. Ha. We sat in the back, and soon the other ladies’ chairs blocked us in. Grayson made it through prayer requests until he got agitated and pukey. During the entire very, very long prayer, he gagged and whined while I said my own prayer that he would at least hold the vomit in until “Amen”. Finally, we were able to escape, and spent the next 30 minutes or so outside, singing and enjoying the beautiful weather. It was actually pretty perfect- it’s not often I get to spend alone time with my sweet boy.

Because the weather was so beautiful today (finally!) my sister in law and I made plans to walk with the kids at Rice University, which we do fairly often. It’s a whole big production to get over there and get the kids loaded and comfortable in the double stroller. After a ridiculously long ordeal of adjusting straps, getting snacks, music, and puke rags ready, we start toward the track. But oh hey, why is the stroller so lopsided? Answer: Flat tire. Seriously? Oh well, who needs exercise and sunshine anyway? We had a lovely little playdate at Baby Theo’s house instead. You can see my children are prim and proper at all times. Yikes.

Tomorrow Grayson has PT again and we have an afternoon play date, Thursday a play date, and Friday G sees his Mito specialist. Yes, I use my friends and Grayson’s doctors to save me from Spring Break. Kidding- sort of.

And just for fun- I have to post this video- it’s short and sweet but I think it might be my favorite ever. Charlotte has a favorite new word, and I think it’s the sweetest little word from the sweetest little girl. (Listen close).

Grayson will be 3 1/2 in just a few days. It’s hard for me to process this, and not just because he’s getting so old (he’s getting so old!), but because of how drastically different 3 1/2 year old Grayson is from 2 1/2 year old Grayson.

This was Grayson just a year ago, and then today.

Some may not notice the significant change in these images, but the difference to me is startling, crushing. And these are just pictures. This disease just keeps on taking my son’s life, little by little. Sometimes it steals chunks at a time, like that horrible day last April. But most of the time it’s tiny pieces- his thumb sucking, his head control, his ability to roll over easily, and his smile. He still smiles, but not often, and we have to really work for it.

And his eyes. The eyes that used to captivate and sparkle are now sad and tired. Tired of the vomiting, tired of the pain. Tired of hospital stays and so many needle pokes.

I’m tired too. I look at Grayson’s future and much of it looks bleak: more hospital stays, pain and uncertainty for a boy whose body is getting bigger, but less functional. And yet, that future must be what the future is, it has to be. The alternative is too unbearable to wrap my brain and emotions around.

I know I write about this all the time, but this is where I am stuck. I need Grayson’s life to mean something good- for him. I want him to wake up every morning and be glad to be alive, despite his body that can’t lift itself up and violently vomits its stomach contents while his nurse or I hold him tight. I want him to enjoy the sun on his face when we go to the park.  I want him to feel secure when he hears the voices of the people he knows, even though he might not be able to see us. And I want him to believe, like I do, that every day, no matter how hard or painful, is worth fighting for.

Grayson is in the hospital. I sensed all weekend we were headed that way- he was just “off” to me. A little too much crying, a random fever in the middle of the night, and some unscheduled naps told me something was up.

Grayson’s labs look ok (or, at least they did this morning), he hasn’t run a fever since yesterday, and yet, he’s sick. Crying. Vomiting. And just a few minutes ago, seizing.

I’ve held him a lot the last two days. I held him on the couch while he slept, trying to decide if we really needed to go to the ER (yes, we did). I held him in the ER bed while he cried himself to sleep after being poked multiple times to get a good IV. And this afternoon I held him in the uncomfortable chair beside his hospital crib as he wretched and vomited violently.

I’ve heard parents say sometimes they like it when their kids are sick for a day or two because of all the sweet, cuddly snuggles. And I get it. The snuggles are wonderful. But for me, it’s bittersweet because my kid will always be sick.

Hospital stays are hard. They just are. They are a complete disruption of life, a logistical nightmare if you have more than one kid, expensive (we easily spend $100+ on food and parking in just a few days), and emotionally and physically exhausting.

Ryan’s spring break is this week. In one way, it makes life easier because there has been one available parent per kid . But it’s also sad and incredibly unfair- for Ryan and for us. We had talked about taking the kids to the zoo- but instead, we have a really great aerial view of the zoo from the 10th floor of the hospital across the street.

Earlier today, I thought for sure Grayson would come home tonight. But a few minutes ago, Ryan texted that he’d had a bad seizure (his first since his last hospital stay) and he’ll be staying another night and even moving rooms to be more closely monitored.

Sigh.

This morning, I read this post  by my friend Esperanza, and I’ve been thinking about it all day. Go read it. You’ll be glad you did. And I in no way have anything earthshattering or original to add to any conversation regarding infant feeding, but here are my thoughts anyway, should you choose to continue reading this post.

Frankly, I’m SO OVER the breast vs. bottle part of the mommy wars. And really, I’m lucky. I’ve never had any negative feedback about how I feed or fed my babies: breast, bottle, and tube (and I’m still doing all 3!). This probably has some to do with the area of the country I live in, but more to do with the people by which I surround myself and associate with. By far, the person who pressured me to breastfeed the most (or really, at all) was myself.

I agree with Esperanza in that women who are successful at breastfeeding do so in part because they are privileged in ways that they may or may not be conscious of. Able-bodiness is one of these privileges. Grayson was physically unable to breastfeed; therefore, we didn’t. (If your baby is able to breastfeed, or really, eat by mouth at all, you are blessed). I don’t respond well to the breast pump, and would never have been able to produce enough for his needs. With Charlotte, I exclusively breastfed her until she was 4 months old, but again my physical limitations forced us to supplement. I simply was not making enough milk for her.

Charlotte has had formula for 9 months. A LOT of formula. She loves it (and yes, I realize I’m supposed to be transitioning her to milk…transitions take me awhile). She’s also had breast milk for 13 months. In a perfect world, sure, I wouldn’t have spent approximately $1 million dollars (may be a slight exaggeration) on formula and 1 million hours washing bottles, but my life is far from perfect. If you compare breast milk with formula simply as substances, of course breast milk is a superior food. But the fact is there are so many other factors that go into infant feeding than simply the substance the infant is ingesting.

I am very aware that still breastfeeding my 13 month old is a gift and a privilege. I’m privileged that she is still interested in it, that it’s a tool I can use for comfort (huge bonus lately during toddler tantrums!), and that I’m able to still provide her with the health benefits of breast milk. I’m privileged to be home with her- the privilege of time is a huge factor that I don’t take for granted. I’m privileged that my husband is and always has been supportive of both bottle and breastfeeding. And it’s a gift that Charlotte healthy and she’s thriving.

It’s been awhile since I’ve written about breastfeeding- my first experience was so traumatic, but that was a lifetime ago. The wounds have healed, and we’ve all moved on. So when I see debates still raging from both sides, I just shake my head and roll my eyes. Feed your babies however works best for you, and move on. And don’t make others feel bad about their choices if they happen to be different from yours.

Another privilege I have: SPELL CHECK. In writing this post, I realize I have NO IDEA how to spell Privilege. I want it to have a “d” before the “e”. Embarrassing.

And one last privilege: living in close proximity to Chick-Fil-A and their cookies. Charlotte agrees with me (I think CFA cookies rank up there with breast milk in the “best” category).

It’s been awhile. I didn’t take a blogging break on purpose, but the last few weeks have kind of flown by and I’ve done a lot of going to bed at an embarrassingly early hour instead of opening up my laptop in the evening.

And the truth is, I just haven’t had much to say. 2014 is proving to be much kinder than 2013 was and life is pretty great right now. And isn’t it sad that the words flow much easier when things are rough than when life is just coasting along?

And as I typed that last paragraph, I panicked for half a second. Things don’t just cruise along for us very often. The other shoe always drops at some point.

Grayson, my sweetness, is actually doing fairly well right now. His seizures have stayed away, I’m getting great reports from his therapists, and he generally seems content and comfortable most of the time. His vomiting is terrible right now- we’re back to 4-5 times a day- but we deal with it and he deals with it and we move on with our day.

Of course I’m still struggling with Grayson’s life- what it all means. I don’t and probably will never understand why such a precious boy should have such extreme limitations and miss out on so much. But I really do try and focus on the good- like the “mmmm” sound of content he makes when I start singing “This is the Day” and the way he rests his head on my chest while we sing. Or the half smile he gets on his face sometimes when little sister gets right in his face to give him a hug.

And gosh, he’s still just so. dang. cute.

And speaking of cute…Charlotte. Oh, Charlotte. Sometimes I can’t even handle the cuteness. Yes, she’s a MESS, yes, she is the reason I usually am in bed before most of the city’s toddlers, but oh my word, I love my days with this girl.

Her words and phrases are the best. The last few mornings I’ve picked her up out of her crib to about 10 rounds of “Hi” and then a hug. “Hi”, hug. “Hi”, hug…etc. Adorable. She’s also learned how to use the phrase “Uh Oh” in (proper?) context: i.e. she throws her food or her cup on the floor, looks down, then looks at me and “Uh Oh” very dramatically.

I hope I never forget exactly how my precious girl is at this age.

I am doing well too. I’ve lost some weight, finally bought new jeans that fit, taught my first essential oils class and made some exciting summer plans. Oh and Scandal is back, and I may or may not have watched last Thursday’s episode three times. Yep, I’ll take life just as it is right now.

Except I would prefer temperatures in March to be slightly above 30 degrees.