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.

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

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.

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.

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…

My heart is heavy tonight for a friend whose baby was just diagnosed with a fatal neurological disease. I feel like I should know what to say to her- that the words should come easily and confidently, because I’ve been in her shoes. I know how this blow feels. But they don’t come easily, and I don’t really know what to say. Because this life, this experience of loving a child you will most likely outlive, is so unnatural and foreign to anything you would ever plan or prepare for, and it takes a long time to become your “normal”. And then when it does become normal, that’s a whole other tragedy, because why the hell should this have to be normal?

What I think I should say to her and anyone else in this horrible situation, based on what I’ve learned the past two years, is this:

• There is no “right” reaction to this news and no “right” way to process it. I have a good friend who cried for days after her son was diagnosed, but I did not. Even today, I rarely cry about Grayson. I write about him, I talk about him and his disease a lot, to anyone who will listen, but I just can’t cry. I sometimes feel guilty about this, but I realize it’s probably my subconscious defense mechanism. If you cry, scream, curse, and yell at God, that’s ok. If you walk around in a fog and don’t want to talk to anyone for a month, that’s ok. There are no rules here.
• Give grace to people who mean well, but just don’t get it. There will be people who say well-meaning, but completely dumb things. You will feel like they are minimizing your and your child’s suffering by being overly positive. You will be told you are SuperMom and that they don’t have any idea how you do it-  just because you are in this role that you never asked for and would trade away in a second if your child could be healthy. Grace.
• Your child is the same child you knew and loved the hour before diagnosis. I remember the day after we found out Grayson had Leigh’s, I felt guilty because at his bedtime, I was ready for him to go to bed. I felt like now that I knew I didn’t have forever with him, I should want to spend every second with him, hold him tight, and never want or need a break from him. The exact opposite is true. For your emotional health, you need a break. My advice is this: pursue a program that will give you respite and/or nursing care. The next few years will force you to become the nurse and therapist you never wanted to be, but giving someone else some of that responsibility will allow you to focus most of your energy on just being Mom.
• Find a support group. You will not only get valuable medical advice and emotional support, you will meet some of the most wonderful people you never would have met otherwise.
• Grayson’s comfort is our goal for his life, and it’s what we base every single decision we make for him on. It actually makes decisions for him a little easier when we put it though this filter. But it also sometimes means disagreeing with doctors, putting him through an elective surgery, or doing things over and over and over that make us uncomfortable (I curse the day I introduced Grayson to Veggie Tales!)
• Don’t focus on death, but look at each day you have as a gift. This really is an in-your-face opportunity to truly treasure the time you have with that precious baby. And it’s ok to be mad at God, but make up with Him sooner than later. You are going to need Him.
• Don’t be afraid of or resist a feeding tube if your child really needs it. Yes, it’s horribly sad that Grayson can’t eat or drink by mouth, but feeding him is zero stress on those who take care of him. We aren’t fighting him to eat, worrying about hydration or him getting enough calories, and his tube is just a part of him now. And once you get the hang of it, it’s second nature and not at all scary.
• Let people help you during this time if they offer. Say yes to anyone who offers to bring you food- the last thing you want to do tonight is cook, right? Many people will ask you to let them know what they can do to help. If you need something, ask for it. If you can’t think of anything, don’t feel pressure about that either. Again, no rules.
• This life will never be normal or anything like anyone else’s life, but it will become your normal. And when that happens, there is some comfort in that. Grayson got very sick and was in the hospital for two nights last weekend, and what would have been a huge event three years ago, is now just a tiny bump in the road, an event that will most likely mostly fade from my memory in a few days or weeks. But, it will never become easy seeing your child in pain. There are things that your baby will go through that will make you furious, sad, and helpless. It’s just part of it. I’ve come to realize that Grayson doesn’t hold onto that pain though- once it’s over, he’s happy and content to be sung to and loved on. I wish I could be more like him. Let your child be your teacher.

This quote accurately sums up my experience of being blessed with my special little G-Man. Most days, I now find I do a pretty good job of floating, but days like this remind me I’m still very much in the deep end. Fortunately/unfortunately, there’s a good many of us hanging out in the deep end, and I think we need to help each other float a lot of the time.

I’ve been struggling with writing lately- I often find myself rehashing the same topics over and over in my head, but then I try to get them down in a post and nothing new or meaningful comes out. I’ve also been occupying my kid-free time with other things- ordering pictures to (finally) hang on the walls that had been bare since we moved in in January, watching movies with my husband (I am NOT a sit and watch a movie person, but he is, so I’ve been trying to indulge him), and well, to be honest, playing Candy Crush or sleeping. Ah, the lazy days of summer (or SO WHAT WEDNESDAY), right?

So instead of a one-topic, cohesive post, I’m just going to have to be ok with bullet points tonight. Here are some things on my mind today…

• I’m going to BlogHer next month! My friend and I wanted to take a trip this summer anyway, and when we found out Kerry Washington is the keynote speaker, there wasn’t much hesitation and we bought tickets. I may or may not be a little obsessed with Olivia Pope. I’m also beside myself with excitement to get to finally meet and hang out with one of my best blogging friends, see San Francisco for the first time, and just get away for a few days. Will anyone else be there? I’d love to meet up!
• While I’m in California, Ryan will obviously have the kids. This post by Josey is great, and has wonderful advice on letting our husbands take charge with the kids. I’ve been trying to be more hands off this summer with Ryan on summer vacation, and it’s been fun to listen and watch him parent from a distance.
• I am participating in a VIRTUAL BOOK CLUB for the month of July. It will be a month of hope and healing as we read and discuss the accounts of 31 thinking parents whose children have been impacted by a number of chronic childhood illnesses (from Autism to Allergies and ADHD to PANDAS, Mitochondrial dysfunction to Sensory Processing Disorder). The group is open to everyone who is interested in participating. I hope you will join me! The book title is: Evolution of a Revolution: From Hope to Healing. You Can request to join here: https://www.facebook.com/groups/teamtmrbookclub
• Please say a prayer tonight for our friend Jagger. Jagger is very close in age to Grayson (I believe he’s just a few months older than G) and also has Leigh Syndrome. I had the privilege of meeting Jagger’s dad a few weeks ago at the UMDF symposium. Jagger is not doing well- he’s having a lot of respiratory issues, and even stopped breathing for a time yesterday. The doctors are trying to determine if he is just really sick or if it’s disease progression. This afternoon I held Grayson on my lap and we talked about and prayed for Jagger. Sometimes the reality of how awful this disease is just becomes all too clear.
• We are going to attempt to take the kids to the beach this weekend. To be honest, I’m nervous. Grayson has heat intolerance and general I-don’t-like-change intolerance (ha!) but we were given a condo stay as part of the Beads of Courage event, so we want to take advantage of it. I hope Charlotte absolutely loves it- she is so cute and funny right now that I have a feeling watching her discover the beach will be worth any hassles of the trip.

That’s all I have for today- hope you all are doing well!

Dear Charlotte,

Another month has passed, and I can’t believe you are nearly a year and a half old! I am absolutely loving the stage you are in right now, and am trying to soak up the tiny pieces that are left of your babyhood as well as your new, larger than life toddler antics and personality.

Personality- you’ve certainly got one! You are loud, opinionated, and stubborn. When we ask you to do something that you have no interest in doing you simply look us in the eye, shake your head, and very calmly say “no”. The other day at about 7 am you grabbed a box of crackers from the cabinet (you LOVE crackers) and brought them to me. I said no, we aren’t having crackers for breakfast. Immediately, you took the box into the living room to ask your Daddy to open them for you. Little stinker. You need to learn now- Daddy and I are a united front: no crackers for breakfast!

You are loving summertime. We took you to the splash pad at the zoo last week and you took off without so much as a glance back in my direction, and had a blast running through the water and splashing in the fountains. Our friend gave us a water table this week, and you have had a lot of fun playing with that too. You also adore having your Daddy home for the summer, and you two have been singing, reading books, and playing instruments.  You sure are a lucky girl.

At 17 months, You weigh 23 pounds, 14 ounces and are in size 18-24 month clothes and size 4 diapers. You STILL only have 4 teeth (???) but have no problem chewing any food we offer you. You are still talking up a storm and are currently very interested in body parts, and want to point out every one’s noses, ears and eyes on a regular basis. This week, I showed you where your belly button is, and you think it’s so funny to point to it, but get confused when you can’t find it when you are wearing an outfit that doesn’t lift up and show your tummy- ha ha!

You are a sweet, loving, empathetic little sister to Grayson, and you still love to give him hugs and kisses. One habit that isn’t so endearing is how you react to his retching and throwing up. Whenever he starts that,  you start coughing with him, making yourself gag until you almost throw up. Then you will go get yourself a throw-up blanket to wipe your mouth. Good grief, child.

Charlotte, I can’t imagine life without you, my hilarious little sidekick. I love you so much- Happy 17 months!

Love,
Mommy

Today just sucked. Truly sucked.

Grayson’s tube got pulled at school yesterday (totally accidentally- these things happen) and even though I was able to push it back into his stoma enough so that it was functioning properly, I knew we needed to take him to the ER to get it checked out, and more than likely replaced.

I knew that if we took him in last night and he needed a replacement, they would just admit us and make us wait until today to do anything.  So I decided to tape the button to his belly and let Grayson sleep in his own bed without beeping monitors and annoying nurses bothering him all night and just bring him in early this morning.

Shortly after we got to the ER, I posted this very optimistic picture, claiming us to be in good spirits, despite being at the hospital.

Eight hours, no food for either of us, three needle sticks (including a failed IV) and two tube change attempts later, the selfie Grayson and I didn’t take would have looked exactly the opposite.

I begged the ER doctor and GI doctor to replace the tube without anesthesia. Grayson just had a tube change/anesthesia in March and I am really uncomfortable with the amount of times and frequency this kid has been put to sleep. Also, Ryan and I are going out of town tomorrow, and the rumor was they wouldn’t be able to do the change until tomorrow.

They finally consented, and did the procedure right there in the ER. I held Grayson’s little arms as he screamed and fought against me and watched with both horror and awe as they threaded a wire and tube into his abdomen. Within minutes, it was done- great! Now all we needed to do was go down to radiology to confirm placement and then we could go home!

The placement was not correct. The tube was in his stomach, not his intestines where it should have been. Since we were already in radiology, they decided to try again, but this time looking at a picture of his insides as they did it (yeah, I could have told them that was probably what they should have done to begin with). But again, they couldn’t get it. The radiologist was wiggling, tugging and pushing that tube all around Grayson’s insides while he screamed. Horrific. Finally, they got a guide wire and said this was the last effort they were going to make. If it didn’t work, we’d be staying for surgery tomorrow. Grayson was now asleep on the table, worn out from screaming.

By the grace of God, it worked. We were discharged about 30 minutes later, and we hung out outside while we waited for my mom to pick us up (ever hung outside a large ER? EPIC people watching!)Grayson is now sleeping soundly with his brand new tube.

Much of today I spent feeling sorry for myself- I was tired, hungry, freezing cold, and bored. But my lack of comfort was nothing compared to what Grayson went through and goes through over, and over and over. He anticipates needle sticks- he knows what’s coming. This makes me so, so sad. Even though he isn’t sick right now, he spent all day in the hospital, and went through so much pain, just so he can be fed. His life is just.not.fair.

He continues to teach me though. Grayson can have the worst day ever, and yet still finds joy in his music, his people, and in returning home. And despite the circumstances, we got a day to spend together, just us, snuggling, singing, and a little bit of crying. Love this boy to bits.