This afternoon, I did something for the first time: I took both my children out by myself. Actually, I have done it before- I think I’ve taken them to two doctors appointments, but at the time, Charlotte was still a sleepy infant, so that really doesn’t count.

To be honest, I was really nervous and almost didn’t do it. Taking Grayson and his wheelchair anywhere is an undertaking, and add to it a crazy toddler, and well…that’s been enough to keep us home for about 20 months. But this afternoon, the weather was perfect and I just couldn’t bear the thought of another stretch of hours cooped up in the house with nothing but Veggie Tales and medical supplies to keep us occupied, so we loaded up and went to a park about 15 minutes from our house.

And it was fine. Easy even. Anti-climactic. No one got hurt, no one had a seizure, and no one even had a meltdown. Grayson sat in his chair and listened to his headphones, Charlotte played on the swings and slides, and I sat wondering why in the world we haven’t done this sooner. And there were plenty of friendly people at the park who I’m sure would have helped me had I needed it.

It seems to me this is a theme in my life- I am, by nature, a somewhat fearful person and sometimes miss out on things because I’m being too cautious. As a child, I worried a lot- I was terrified my house was going to burn down, I was going to be kidnapped, and that I was going to be coerced into buying drugs (???). As an adult, I still worry about physical tragedies- I worry daily about getting in a car accident, for example.

I also worry (and somewhat obsess) about the future of our family. For months, I’ve felt the heaviness of big “decisions” weighing on me: decisions about our family size, school for our kids, and where we will live. Of course, none of these issues need to or will be decided today, or even this year, but that doesn’t stop my brain from working overtime stressing and over-analyzing them. And I’m afraid I/we are going to choose “wrong”.

Then this past week, three separate times by three different people (I think God knew I’m stubborn and needed to hear this three times to get it) talked to me about fear and control. Basically, I’m reminded that almost nothing about my future is in my direct control. We can plan to have or not have another child, with our ideal spacing in mind, but…look at my other two children. Nothing about their lives and how they came to be was in our plan. So what makes me think I have to “decide” or “control” if and when a third child joins our family? I can stress and worry about where we are going to live in four years so Charlotte can go to the best school, but then I look at where I was four years ago and that kind of makes me laugh. Four years ago today, I was sitting in the PICU with my sick newborn, just getting a taste of what I had no idea was ahead of me. Control? Not so much. I do know that we have been blessed and taken care of so abundantly thus far and have made it through some really rough times in the past few years, so I know whatever the future looks like, it will be ok.

It actually feels rather freeing to know that I’m not in control, that I don’t have to be afraid and obsess over these things. That I can just enjoy the ride…and hopefully more frequent trips to the park.

One of my favorite blogs is The Thinking Mom’s Revolution. The women who write for this blog (and books too) are mostly parents of children with autism, but many of them face other medical challenges with their children, including Mitochondrial Disease. They are smart, they are blunt, and they are on a mission- to educate and support parents of children with disabilities, and to expose and tell the truth about what is happening to our children.

The TMR post that has had the biggest impact on me, and one that I’ve forwarded to many of my Christian friends questioning health decisions for their children, is this one. by Melanie Baldwin (Booty Kicker is her TMR name). Melanie has also written extensively about the challenges faced by special needs families trying to be involved in church: if you are involved in ministry, I highly recommend you read this, this, and this.

Melanie, who has a son with severe regressive autism,  has done so much for so many, while at the same time fighting her own health battles. She is currently fighting cancer for the third time, and needs help.

From TMR:

Text from fundraiser:

Thinking Mom Melanie Baldwin suffers spine, liver cancer after having beat breast and bone. Son suffers profound autism: please donate!

Dear Grayson,

Happy fourth birthday to my precious little boy! Even though you were at school most of the day,  you were on my mind and my heart every minute of today. Your sister and I sang “Happy Birthday” to you many, many times while we were still in our pajamas, and you tolerated the camera in your face as I tried for many minutes to get the perfect birthday shot. You obviously didn’t understand what all the fuss was about, but you did make me laugh with your silly expressions and bubble blowing.

We didn’t have a party for you this year (because parties really aren’t your thing) but we did have family over last night for singing and dinner, and I brought a treat for your classmates at school this afternoon. There has never been a time where I wished more that you could stuff your face with sugar. It does make my heart so happy, though, to see how much  your teachers and classmates love you. Your school is awesome.

I suppose it’s a little silly for me to still be writing you these letters since you will never read them, and I’m not sure what to write to you or about you that I haven’t already written a hundred times. And even though I know we won’t ever celebrate that precious day you came into the world in a traditional way, I hope and pray that we will be able to celebrate YOU for many, many more September 22s to come.

I love you, my Monster Man.

Love,
Mommy

Dear Charlotte,
Today you are 20 months old. I don’t notice it as much as in person, but looking at these pictures makes me realize what a big girl you are and how much you have changed in the past few months.

You are still as sweet and funny as ever, but in the last few weeks have really started to test your boundaries and figure out what you can get away with. It’s a learning curve for both of us- you dealing with your frustrations and acting out, and me, trying to learn how best to discipline you while still ensuring you feel secure and loved. It’s tricky.

Your verbal skills continue to grow; most recently, you’ve started using three word sentences with the possessive (“It’s Mommy’s phone”, “That’s Daddy’s shoe”). You also surprise me almost daily with words I had no idea you can say (“refrigerator” being the most recent). It’s such a blessing to be able to communicate with you, even though sometimes we both get frustrated when I don’t know exactly what you are saying (Mommy mixes up “Milton” (the dog) and “Megan” (the cousin) quite frequently, and you do NOT like that).

You’ve had a big month in September. Last week, you took your first airplane ride and got to visit our family in Charlotte, NC, the city you were named after. We had a great time seeing and playing with your cousins, and you came home with a whole new arsenal of family names to say- you still talk about family members incessantly. You also started school a few weeks ago, and are loving the Butterflies class- your teachers report that you are always happy and are quite the little leader in class. I don’t doubt it!

Charlotte, at 20 months you:

• Weigh 25 pounds, 12 ounces.
• Wear size 18-24 month and 2T clothes, size 5 diapers and size 5 shoes
• Still LOVE your bottle before naps and bed
• Have becoming a little pickier with food, but generally are still a really good eater
• Have 4 and two halves teeth. I was so excited to see 2 molars poking through a few weeks ago, but they sure are taking their sweet time actually coming in. No sign of any eye teeth or any other pearly-whites. Oh well!
• Love to hold things in your hands. We call them your “treasures” and usually it’s various utensils from your play kitchen. You always have a random spoon, cup, or bowl in your hand.
• Sleep about 12 hours at night and take anywhere from 1.5-3 hour naps in the afternoon.

Charlotte, you make me crazy, but in a good way. I love how you make me laugh, challenge me, and allow me to experience the excitement of new things through you. I love you so, so much.

Love,
Mommy

I’ve been trying to reflect a little bit on this day- the anniversary of Grayson’s diagnosis. Mostly I’ve been distracted- running errands, lunch with a friend, and dealing with the every day craziness that is life with two little ones. But then this afternoon I just happened to visit a friend whose baby has a terminal illness and as I held that beautiful little girl (I really think sick kids are some of the most gorgeous children) I fought back tears. It’s just so unfair and unimaginably horrible that our precious kids are going to die of these diseases and suffer along the way.

Lately, when people ask me how Grayson is doing, I answer positively that he’s doing really well. And he is. He hasn’t been sick and in the hospital in months, his seizures are a rare occurrence, and a few recent medication tweaks have proved successful in improving his endurance, energy and connection with people. The biggest change (and probably the cause of a lot of these results) is we’ve finally after YEARS of struggle, seem to have his vomiting under control. He still throws up 1-2 times a day, but what a difference from the 5-6 times of just a few months ago.

We’ve also been trying to make a conscious effort to take Grayson with us when we can, even though it’s always a ton of work and sometimes scary. We took him to the beach late in the summer, to the ranch a few weeks ago, and last weekend on a church retreat. I feel like we pack up practically our whole house anytime we go somewhere with him, but each time, he has surprised us with how well he’s done.

On the other hand, part of me wants to scream “THIS is ‘doing really well’ ? Really?” Imagine if you threw up every day, even just once. Every single day. I would be miserable. I’m so thankful that his therapist reports he’s holding his head up for her for a minute at a time now, but also so pissed off that this is something I have to be thankful for. It’s a fine line- being grateful for improvements and loving who Grayson is, not who I wish he could be, and at the same time being righteously angry that this is his life. His life, where improvements will be subtle and probably not miraculous, and where “doing really” well could disappear in an instant.

When Grayson was diagnosed with Leigh Syndrome two years ago today, all I could think was he’s going to die. I still think about losing him quite a bit, but my thoughts are more centered on his future: his life, not his death. I think about the challenges of taking care of him as he gets older, and bigger. I think about the impact his disease will have on his sister’s life, and our family. His doctor believes that he could have years left with us, and while this is absolutely the best possible news in our situation, it’s also scary to think what those years are going to look like. I just hope for Grayson, he continues to always feel love and peace from those of us who love him so, so deeply.

SO WHAT that we were so tired of toddler antics  tonight that dinner consisted of pizza and beer in front of the TV…and yes, we wheeled the toddler in her highchair into the living room to eat her pizza with us.

SO WHAT that Charlotte completely wears me out and makes me crazy with her deranged behavior spirited enthusiasm, but then goes and does stuff like this…swoon.

SO WHAT that I was giggling yesterday that I had one of my most commented-on Facebook posts ever when I asked for travel tips for this weekend- we are taking Charlotte on her first plane ride and I was a tad nervous (Charnado in the skies? Yikes). Ya’ll are passionate about your toddler entertainment ideas (and I so appreciate it- going shopping for snacks and stickers tomorrow!)

SO WHAT if I’m kind of in love with afternoon screen time right now. As I mentioned last week, the discovery of the month is that there is something other than Veggie Tales that can entertain Grayson! So now we have our afternoon routine: put him in the stander, start the YouTube playlist of these goofy videos, children become zombies for 30 minutes and I’m able to play on my phone do something productive uninterrupted. And yesterday, G actually stayed in his stander for an entire hour- wow!

SO WHAT if the cuteness of these two just kills me. They are ON A MISSION. Yesterday was the first day of Bible study and Charlotte goes to the childcare, which she loves. When I asked her in the morning if she was excited about it I got a very dramatic “NOOOOOOoooooooo!” Well, what do you want to do today? “Theo”. Yep- her cousins have her whole heart.

SO WHAT that I am so, so glad G’s nurse is back from her trip to Africa. So glad. She is so good to Grayson, he loves her, and things just run more smoothly when she’s around.

SO WHAT that Grayson had a GI appointment this morning and even after cutting back the rate on his feeds a few months ago, his BMI is still too high because of his inactivity so we are going to have to cut back again. And fine, whatever, but it’s still so strange to me to be worried about him weighing too much rather than too little. However, when I pick him up, my back tells me otherwise.

SO WHAT if tomorrow is September 11, and besides being September 11, it’s two years ago that Grayson was diagnosed with Leigh’s. And I’m not sure what I’m feeling about that yet. Maybe I’ll try and figure it out and write about it tomorrow.

What are you saying SO WHAT about today?

SO WHAT that  I meant to blog on Saturday because it was my four year anniversary of blogging (wow!) but we spent the day with family and then celebrating this precious little one year old.

SO WHAT that Charlotte wore this dress Grammie brought her back from Austria two days in a row because 1. it’s cute and 2. it makes me giggle because I want to give her a goat and teach her to yodel. And I love this picture because this is the attitude I get every single time I won’t give her my phone to play with. 

SO WHAT that I’m about to post multiple pictures of Grayson watching TV. I’ve had an A-Ha moment this week and am so excited about it. I went in to G’s classroom the other day to talk to his teacher and got to see them have “circle time”- their start-of-the-day activity. The kids all sat in their wheelchairs in a circle and watched a video. I was shocked at how calm and engaged Grayson was with this video. He has NEVER watched TV at home or tolerated anything other than Veggie Tales or us singing to him. His teacher told me they’ve done these videos since G started at the school (2012 school year) and he likes them because he knows them so well. His teacher offered to make a playlist on G’s ipad so we can try them at home. Yesterday, I nervously got him comfortable on the couch and VOILA! he loves them. Can I just say that the fact that we have another option other than Veggie Tales to keep Grayson happy is AMAZEBALLS. Also, I met with G’s physical therapist and she really wants him in his stander at home at least 25-30 minutes a day (a far cry from what we’ve actually been doing), so I think our new after school routine is going to involve the stander and some good old screen time. And Charlotte, who has never really watched TV, has gotten into the videos too. Win win!

Is he not the sweetest? My handsome nearly four year old (sniff sniff)

Happy Wednesday! What are you saying SO WHAT to today?