It’s the Same Either Way

Just a few minutes ago, Grayson’s feeding pump started beeping. I turned on his bathroom light, felt for his tube and realized he had what tube feeding parents call “fed the bed”. Greeeaaat. It’s totally my fault- I forgot to unclamp the tube after I did his meds and the formula backed up and leaked through the med port (although why the stupid pump only started beeping 3 hours after this mistake I do not understand). Anyway, it’s a whole big process to unhook Grayson’s feeding tube and ferrell bag, undress him, wipe the sticky formula off his back and legs, put on a new undershirt onesie and new pajamas, rehook up the tubes, and change the sheets. And the dude stayed sound asleep throught the whole thing. 

One thing I hoped to gain from BlogHer was an idea of how to write about small, every day moments in caring for Grayson that impact me emotionally and are a part of me processing the unique parenting situations I face. The first few years of Grayson’s life, I had a lot to write about; we were always either running tests, going to “big” doctors appointments, waiting for results, or little by little discovering the shocking reality of his physical limitations. It’s not really like that anymore. We aren’t anxiously waiting  any huge diagnostic results, we’ve cut down on the number of specialists we drag Grayson to see, and life, as unstable as it is, is fairly predictable and routine. And yet, I still need to write, because sometimes the routine and predictable are the most heartbreaking. 
Back to tonight. I realized as I was undressing and redressing my sleeping son that the process- the physical challenge and effort it takes and even just the logistics of getting that task done- is exactly the same when he’s asleep as when he’s awake. There is absolutely no difference. And that is a picture of Grayson’s limitations and the reality of a body that betrays him, a body that is always asleep. Imagine dressing your preschooler every morning while he is still asleep; you have to maneuver his arms and legs through the clothing and gently pull the shirt over his head without straining his neck. He doesn’t help at all, because he’s asleep and totally unaware of what you are trying to accomplish. His limbs are stiff and contorted and you just pray you don’t break a bone in the process. Then you  pick him up, his almost 40 pounds of dead weight slumped against you, and your prayer this time is that you don’t throw out your own back. If that happens, you’re screwed. 
It doesn’t change, except he’s getting bigger and heavier. And I’m scared. What does dressing him and carrying him look like in another year? Five years? What if his prognosis is wrong and I’m dressing a teenager or adult? What does that even look like? I just don’t know. 
So many questions brought on tonight by one little annoying beeping pump. 

What’s For Dinner?

I started off 2014 doing really well with cooking dinner. I searched the internet for recipes, made weekly meal plans and grocery shopped for a week’s worth of meals at a time. This streak lasted a few months (actually longer than I anticipated, honestly), but the past few months I’ve definitely been slacking and am back to my old ways of starting to think about what we are going to eat approximately 22 minutes before the desired dinner time.

I have about a 3 or 4 meal rotation: tacos, enchiladas, pasta of some sort, and the following chicken dish. What is working in my motivational favor is we feed Grayson’s nurse dinner on the nights she is with us, so I’m forced to come up with things other than a peanut butter sandwich or scrambled eggs most nights. But, I’m totally in a rut. I need fast, relatively healthy, mimimal ingredient dinner ideas- feel free to share with me if you have something great I can try (but please, please please don’t tell me to go on Pinterest- my brain just can’t go there).

I do want to share with you my favorite meal that I actually cook at least once a week right now. It’s my favorite because 1. It’s absolutely delicious and 2. It’s absolutely fast/easy/idiot proof- all things I require.

Pesto Chicken

1 package of boneless, skinless chicken thighs (you could totally use breasts if you wanted to)
1 tub (7 oz) of basil pesto (I use Biutoni brand and I find it by the refrigerated pasta at HEB)
1/2 bag 1 whole bag of mozzarella cheese (I just realized Ryan used a whole bag tonight and yeah, why not? I don’t think a dish can have too much cheese, amiright?)

So all you do is spray a casserole dish, spread a little pesto on the bottom, dump the chicken in, and spread the rest of the pesto over the chicken. Cover and bake it for about 20-25 minutes at 350. Take it out, cover the chicken with cheese and put it in for another 5 minutes or so, until the cheese is melted. That’s it. So easy and yummy.

What’s for dinner at your house tonight?

Reflections on BlogHer ’14

It’s 7:22 am and I’ve been awake for more than three hours already. Yawn. I’m blogging on a plane, fighting nausea from the moderate turbulance we’re experiencing, while the people who surround me sleep in uncomfortable positions. But I just cannot sleep, partly due to the coffee my body required just to make it here, but also because my mind is spinning so fast with all that I’ve taken in this weekend.

First, there was the fun. San Francisco. Laughter. Too many carbs. Selfies with my bestie (how old are we?). The Blogess. Happy Meals and white wine for dinner and then dancing with Run DMC at the closing party last night. 
There were the connections. Hugging Esperanza goodbye and feeling sad that my internet-turned-real-life friend can’t meet me for dinner or a play date next week. Recognizing a blogger I’ve read for years and finding out she reads me too. Talking to women who in my head are like, famous, but are actually real people doing the same thing I’m doing behind the computer screen with just a lot more pageviews. And a whole stack of business cards with new URLs to check out.

There was Kerry Washington and Arianna Huffington. Swoon. Voices of the Year blog posts read aloud that made me cry, open my eyes, and die laughing

There was escaping my every day life and then the realization I can never escape (not that I want to, not really). I received a frantic voicemail from Ryan Friday night that simply said, “Call me. NOW”. As I hurried out of the ballroom to call him back, I was sure Grayson was in trouble. No- my medically fragile kid was peacefully sleeping at home. It was my healthy kid. Charlotte had a seizure in her crib and earned her first trip to the ER. It was a febrile seizure (she was fighting something and spiked a fever) and is fine, fine, fine, but REALLY?! What.the.heck?

There were moments where I felt very small. I live in a bubble- a white, Christian, priviledged, straight, rich (even though I am not) bubble. And it was nice to pop out of that bubble for a time and just listen. There are a lot of conversations I’m not ready to actively participate in, but I’m more aware of them now and where they are happening online and am open to more listening and more learning. And I want my convictions and opinions to be based on real knowledge and understanding, not fear and ignorance of what’s going on outside my bubble. 
There were also moments that surprised me; one of the sessions I was most looking forward to was the Special Needs Mini Con, and it actually ended up being my least favorite. I made some great connections (“find your tribe” and all that) but the conversation just wasn’t what I was looking for. It made me tired, and I realized I really needed this trip to be removed from all that- that even though I write about Grayson, and Mito, and dub myself  “Special Needs Mom Blogger” (I have the business cards to prove it), I need to think about and write about more than that. 
BlogHer ’14- enlightening, inspiring, FUN. I’m already plotting how I can go next year.
 
 

BlogHer Bound!

Early Thursday morning my friend Lisa and I will board a flight to San Francisco. We are going to California for the BlogHer conference in San Jose, but are also going just to get away and frankly, escape our crazy lives for a few days. We are both special needs moms to precious little boys, which neither of us would ever have dreamed would be our reality in our carefree days as college roommates and maids of honor in each others weddings.

This will be the first time I’ve taken a trip just for me since having children and I’m so excited. I’m excited to see a new part of the country, for uninterrupted sleep, and for long conversations and lots of laughs with my best friend. I’m excited for the conference and to immerse myself in the blogging culture; blogging is a hobby I stumbled upon almost by accident, but it has become one of the most precious outlets I have. I hope I come home on Sunday a better writer and with some fresh ideas on how to improve my blog. I purchased my domain name over a year ago and have been transferring all my posts over to WordPress as I go along, but I don’t like the format or “look” of my blog over there, so I really hope I can get some help with that at the conference and make that my “official” blog home.

I’m also dying with anticipation to meet in person a friend I “met” blogging almost 4 years ago. Esperanza and I faithfully read and comment on each other’s blogs, and I absolutely consider her a friend, even though we’ve communicated only though blog comments and email. I know it will be great, but I’m nervous- I guess we never truly escape that “what if she doesn’t like me” feeling of the first day of junior high. (You’ll like me, right E?) I know we are very different in some areas of our lives and have differing views on some issues, but we are both mothers with really little children trying our best day to day to figure out this parenting thing. I think motherhood can bond women closely despite other differences.

Overall, I truly don’t know what to expect from this trip, other than my expectation to have a great time, get out of my comfort zone, and be open to learn. Now, I guess I better start packing. Ugh.

Letters to Charlotte: 18 months

Dear Charlotte,
Happy Half Birthday Little Lady! I’ve always said 6 months is my very favorite age, but I think maybe it’s now tied with 18 months- maybe I just love half birthdays, who knows. Anyway, I love everything about you right now- you’re curiosity, spunk, the love you have for your friends and family, and the lightening speed you are learning new things. It’s so exciting to see the world through your eyes.

If play is the work of childhood, you take your job really seriously. You never stop, or even slow down, unless  you are asleep.  You’ve recently started to enjoy playing with puzzles, listening to books for more than 3 seconds at a time, and coloring with markers and crayons. But more than toys, you are interested in anything and everything that adults or anyone older than you is doing. You love looking at pictures on my phone and naming our family members.

Speaking of family, you are obsessed. You are constantly talking about your grandparents, aunts and uncles, cousins, and your brother. You love spending time with these people more than anything, and we are so blessed that we live in the same city as so many of them. You even talk about your great-Grandaddy, who died years before you were born, and you identify him in pictures even though no one told you who he was. Care to explain that one, missy?

Your vocabulary continues to grow exponentially and you are just beginning to put words together to form phrases and little sentences. You love to sing, and know all the words to many songs, including hand motions. You are hilarious when you perform for us. Your favorite to sing is still “The B-I-B-L-E” and you will randomly sing it at different times during the day.

We had your 18 month checkup last week and you are completely healthy. I never want to take your health and your abilities for granted. At 18 months you:

  • Weigh 24 1/2 pounds and are in the 60% for height.
  • Still have only 4 teeth. Your doctor assures me they are coming, and we won’t worry about it until you turn 2
  • Wear 18-24 month clothing, size 4.5 shoes and size 4 diapers
  • Still take a bottle of milk before naps and bedtime and I can’t even imagine the drama if we tried to take that away right now
  • Sleep 12-13 hours at night and usually take a 1.5-2 hour nap in the afternoon

Charlotte, you are just simply the best. I could not love and adore you more if I tried. Happy Half Birthday!

Love,
Mommy

 
 

Props of Motherhood

I read this article this morning, and thought it was excellent.

http://mobile.nytimes.com/blogs/parenting/2014/07/17/goodbye-to-cloth-diapers-and-ideal-motherhood/

It’s not about cloth diapers- not really. It’s about how we as mothers cling to these “props” of motherhood to carve out an identity for the world to see, and judge.

And nowhere is this more evident than in motherhood, where our possessions convey our sense of care and concern for our children, where our choices are vetted and second-guessed for a lifetime.

I am so, so guilty of this, but I think so is everyone to some degree. For me, nurseries and clothes have been my biggest “props”. I love to dress my children in precious little outfits, and I spent hours on their nurseries and have the “perfect” pictures to prove it. Never mind that Charlotte usually ends up just in her diaper by the end of the day and those crisp white shorts I bought Grayson at the beginning of the summer are now stained with post-IV antibiotic diaper blowouts. Never mind that Charlotte’s nursery is littered with clothes that I’m just too tired to put back in the drawers after the tenth times she’s pulled them all out. Never mind that Grayson’s room is taken over with syringes, prescription bottles, and feeding tube supplies, and in function is more of a medical clinic than a little boy’s room.

Our life is messy. Physically messy, situationally messy, and emotionally messy. But when we go out in public, my kids look cute, and put together. Yes, it’s a prop, but it makes me happy. I love picking out their outfits, dressing them, and putting a matching bow in Charlotte’s hair. It’s superficial and silly, but it makes me smile. And I can honestly say for the most part, I do it for me, for the fun of it. But sure, it’s nice when people compliment my kids and tell me how cute they are. Of course it is.

The more time that passes, other props of motherhood seem less significant and important to me. I’ve admitted to myself that party planning is not my thing, so my kids won’t ever have Pinterest-worthy birthday parties. Breastfeeding was important to me this time around for reasons that had nothing to do with other people or my image. I tried cloth diapering for 6 months and actually liked it, but when Grayson got his feeding tube, that was the end of that (I needed things to simplify). And while decorating two nurseries was definitely my thing, if we are blessed with a third child someday, I’m not sure that will be of any importance to me anymore. I’m kind of over it.

But motherhood isn’t just about my image and my choices and my identity. It’s a collaboration between who I am and the children I’ve been given…

So true. This isn’t just about me. It’s about these two little people with their own personalities, desires and needs. Those come first, before anything I think would help craft the identity I’m hoping to achieve. And I don’t think anything could force a person to recognize and hopefully accept this more than having a special needs child, who doesn’t fit in that ideal photoshopped picture of motherhood. Thank God for Grayson, that sweet little boy who taught me that cute little outfits and monogrammed backpacks are fine, and fun, but don’t make me a good mother. We are all just doing the best we can. And for the millionth time, can we all just chill out a little and let each other make the choices best for our individual families and stop judging each other when our choices happen to be different? I hope so.

Semi-Wordless Wednesday: Toddler Expressions

She never ceases to make me laugh. Here are some of today’s expressions, caught on camera. I really wish I had captured her face as she peed on the floor by her play kitchen after escaping from me after her shower. Priceless.
 In the waiting room at her 18 month (gasp!) appointment, giving side-eyes to a 5 month old baby
 She insisted on playing outside in the rain this afternoon with her waaaaa-ter.
 It’s so much fun to track water and dirt back in the house.
 I taught her the word “elbow” yesterday and all day long she’s been saying “hi elbow” to my elbow and wanting to hug and kiss it. Toddlers are weird.
 Pasta night! Thanks Daddy!
All done!

Unexpected Grief

When Grayson was a baby, Ryan and I used to do this silly little thing where we would name his pajamas and make a big deal about which ones he was going to wear that night. These were his “Emergency Transportation Jammies” and were one of our favorite pairs.

We have been passing around G’s clothes to a friend with a little boy and then on to cousin Theo, and had a bag returned to us the other day. I was looking through the clothes and found the jammies. Instead of passing them on, I thought it would be cute for Charlotte to wear them, since they are just her size. I think this is the first time she’s ever worn any of Grayson’s old clothes, except for some newborn sleepers. Yeah, I think they’ve been washed a few times!

It’s funny how grief hits me at the most unexpected times. As I was snapping pictures of my girl in her brother’s pajamas, my stomach turned when I realized how odd it seemed to see a little person walking around while wearing them. They look so different on Charlotte than they did her brother. Of course, my memories of Grayson wearing these are of him laying down, or holding himself up in the excersaucer, like in the picture above. Then tonight, when I went to find that picture of G, I noticed it was dated just a week before he turned 18 months. Charlotte will be 18 months in a week. The kids are exactly the same age in these pictures. I had to triple check the math, because my mind just couldn’t process it- they just couldn’t be the same age here. Yep, they are.

I think of how busy Charlotte is right now; how she doesn’t slow down or stop for a second. She’s an almost 18 month old acting exactly how one should act at her age. At 18 months, Grayson was still a baby. At almost 4 years old, he’s still a baby, just in bigger jammies.

Again, I am humbled and grateful for the gift of my daughter, and that she is in fact, a girl. I know had she been a boy, there would be many, many more moments of sadness like this one, and I would be more inclined to compare my children than I do now.

It’s just a worn out pair of pajamas, but it’s crazy how it’s made me realize how different the experiences of caring for my children have been. And as Charlotte gets older, those differences get more and more pronounced. And I’m allowing myself to still be a little bit sad about that tonight.

Thank You

Last Thursday, Grayson’s nurse was with him all day and they went out for a few hours, as they often do. They went to her apartment for a few minutes, and when they got back to the car, Grayson’s iPad and headphones had been stolen.

His nurse was of course stunned and horrified, so she and Grayson trekked to the police station to make a report. Being without his Veggie Tales, he started getting very agitated, so his nurse started singing to him, and she said the cops joined in to calm him down- ha! Unfortunately, there wasn’t much the police could do, and I was dumb enough not to have the iPad backed up on the cloud to be able to track it, nor did I have insurance on it (huge lesson learned). G’s nurse felt horrible, and even started to order him a new iPad on her phone (we stopped her).

The next day, we were so humbled by the many, many people who wanted to help us replace the stolen items. Since so many people were asking, and I’ve learned that people really do want to help when they offer, I set up a donation account. I’ll admit, I felt uncomfortable doing this, because I in no way wanted to seem like I was asking for or expecting people to give us money.

We were overwhelmed with the love and support people showed to our family. I fully realize that a stolen iPad is a first-world problem, and this was not a horribly tragic event in the grand scheme of things. However, Grayson’s Veggie Tales, YouTube videos, and the few apps he is able to play with are some of the few things in his life that keep him calm, happy, and occupied. He can’t play with toys, run around, or even watch regular TV. That iPad was a huge loss for him.

We were given more than enough money to replace the iPad, case, and headphones. I’ve ordered Grayson wireless headphones that will hopefully stay on his head better than the ones he had before (we actually bought him some on Saturday but they were too big for him so I had to order the child size). I also got insurance for the new iPad and put Find My iPhone on it.

To those who gave us money, several of whom we don’t even know, thank you so, so much. Ryan and I are so grateful for your generosity and you have blessed us tremendously. I know God will reward your generosity with huge blessings. And look how happy you made this little guy…