3 sept 2018

It was a nice long slow weekend for us. We went for a walk at crystal bridges and ate downtown. We set up our badminton net (yes – I kept it mom!) and Ruth really got into it. Annie tried to hit it once, missed, threw her racket down in frustration, and stormed inside. She later came out after drawing about it.

They all three played in the pool and we fed them their burritos in there as well, just so we didn’t have to deal with drying them off.

They ran around catching fireflies after dark and then Ryan held Gertie as he chased them through the house.

And to give you a taste of what motivates Gertie to side step…. apparently it’s witch laughter. (And books).

I always compliment Ryan on not allowing Gertie to become sensitive to loud noises. He and the girls do a stellar job at it. Stellar.

One day I’ll write more story-like posts again, but that’s not today.

27 aug 2018

We’re free. I guess they’re free, but really it’s us. We let George & Ginger (the ever changing names, but I think these have stuck) out today and everyone came back at night except for Ginger. I went to the gym and after coming home, started a mini search party with a flashlight, eventually finding her up in our big gum tree. Way up. Ryan said to leave her, but I politely asked that he put on his shoes and climb the tree to retrieve her. He did. And we got her. And it was such a big hullabaloo.


I love these pics of Annie. Of her in mid-skip and smiling so big walking toward me. She’s enamored with this dress because it has pockets. The girls are feeling better, thank goodness. It’s been a long week.

I never had my camera around with Gertie today, but we had such a good day walking and swinging and sitting on a bench outside feeling the wind around us. She walked all over the driveway and into the backyard while the girls rode their bikes by her and she wanted to go through the grass into the more open space. We’ve started working on some things for next summer, only one single raised bed and planning around that because I’ve realized that I need to do babysteps to be successful at anything. But seeing her push through the grass always gets us wanting to move forward our plan of crushed gravel paths in the backyard for her (and me. and my pinterest boards. and my daydreams of winding through pockets of wildflowers.) Our local master gardener group is having a plant sale and I’ve pre-ordered some fun things: milkweed (there is a butterfly garden at our art museum with milkweed as its star and ever since our latest walk through it, Ruthie has been begging me to get some), Black-eyed Susan, Echinacea purpurea, Elderberry, and one I’m most excited about: Nanny Berry bushes. They said it’s native to Missouri and makes a nice hedgerow with pretty leaves spring/summer/fall as well as produces berries that can be eaten off the bush or canned. I’d planted a row of lilac bushes in a couple areas and our mow guy mowed them all down despite them being marked (ugh!) so these Nanny Berries may do the trick. I am falling in love with flowers!

Back to Gertie, she also moved out of her crib onto her floor mattress. I knew in the back of my head it was the beginning of the end for naps but I’m ready for it. I laid her down and it only took a few minutes before she crawled out of bed and knocked on the door. I’d open it to put her back in and she’d try to bolt (awkwardly and slowly – if you can imagine it, it was funny), but I’d pull her back in. Finally I just let her go and she crawled down the hallway repeating “Night Night” over and over. She’s a stinker.

Tomorrow she has a botox appointment to relax her eye muscles, allowing the one that’s pulling her eye inwards to loosen up and straighten out. We’ve done it before and it seemed to work a little bit. Her doc doesn’t like to rush surgery and we are definitely on board with that if there are other options to try beforehand. All I know is Ryan has to take her in at 5:30am and I’m thanking the heavens above it’s not me.

 

11 July 2018

They said they’d never really practiced this before with Gertrude and though they had to assist her, were very proud of what she was doing. Sticking her booty in the air is a key part in learning to stand up by herself.

I was telling Ryan about her booty and Ruthie asked if she did that. Yes! But you were very very little. Watching the breakdown of all the little movements needed to get around is actually very humbling. Our bodies are amazing and we don’t even realize it.

8 june 2018

I said, You guys. It’s just me and three of you. Please just listen to what I say and don’t go nuts. 

So we went to the Splash Pad, which on the scale of venturing out solo is like a 2, but you just never know. And honestly, I always expect the worst, especially hauling Gertie around. I should’ve known there’d be no issue though since she and water are best buds.

Right off, they found “Camille” in the plants. She’s the lady bug that I somehow convinced is the same one they’ve been seeing since last year when they had to send her back into the garden. They were so worried about her, but ended up reuniting this spring. How amazing that she remembered where they lived and even visited them at the splash pad. What a great gal.
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Ryan and I have a few fun things coming up this summer. One of which is leading a new small group through our church. I really never thought we would, but the stars have aligned with another couple to get one going. And, after taking a year off to rest on Sunday evenings (which I absolutely needed and was thankful for), we’re ready to jump back in. You can get kind of eyes-glazed-over when you hear them say over and over while urging people to join one: We’re not a church with community groups, we’re a church made up of them. But now I fully understand the need to have a constant small circle around you.

I’ve only shared with a few people, and not even with my family, but about a month ago I had what I think was a nervous breakdown. Ryan had to come home early every day for almost a week. I was incapable of doing much beyond a simple meal: (think pb&js for dinner). I spent most of the week crying: in bed, in Gertie’s therapy waiting room, with her therapists, in the shower, at dinner. During nap/movie times, I would walk around the backyard sobbing and praying for help. From my core praying. It was probably the scariest it’s ever gotten. I guess in the midst of the news recently, I should add that it  never got to a point where I was worried of what I’d do, but I wonder what it would’ve looked like if I didn’t have that single thread of communication directly to God, the frailest of threads that was somehow strong enough to keep me upright.

Afterwards I casually shared that experience with a friend and she asked me why didn’t I reach out to her. She would’ve been the first person called too. I can share the deepest of my neuroses with her and there’s no judgement. We’ve done online bible studies together. She is a children’s pastor for goodness sakes. So why when I hit bottom did I not call? But I do know why. For someone, and maybe you’re the same way, it’s hard to ask for help. I want someone to just know without me having to explain everything. I want them to proactively send me a text. I want them to show up with a dinner (because everyone knows that’s a mom’s holy grail, a pre-made meal). Even Ryan said that he does me a disservice because whenever anyone asks about us (alluding to life with Gertie), it’s always positive. It’s always, “Great! She’s continuously improving! Hooray Tada!” And while I can see his point of only sharing the good news, it also isolates us from help when we need it. On the flip side, it’s helped me learn what I need to look for and do for others.

This is why we’re excited to start back in with a group. To have people who keep up with us (and us them) weekly, where no one will be expected to cold call a friend from ground zero. Where we can see the progression of a snowball going down hill and either all stand in front of it mid-descent or rebuild it after it shatters at the bottom. I so understand now why these face-to-face relationships are important.

And just to update, I feel really good right now. Another friend mentioned that trauma and the brain go through cycles, showing its recurring face like clockwork. Is it related to when Gertie was born and all that followed? I don’t know. I wouldn’t be surprised if it had a little to do with it. But in the aftermath of everything a month ago, I feel different. I’m starting to be intentional. I am repeating to her the same things I say to the others: I am proud of you. You are a good girl. You make me happy. And she does. She really does, if I’ll just let her. But I do feel it happening. Her personality is coming out and I find myself laughing a lot at her.

Here she is stringing two “words” together (don’t mind her stained shirt). Two words/sounds in a row are a critical step in speech. Yesterday, when Ryan came home, I carried her out to meet him and he said “Hi Gertie!” and she responded without me cueing her a clear “Hi Dada”. Today, at the splash pad a girl came up to her little fountain and said Hi and Gertie said Hi back. To understand conversation, the back and forth. We are so hopeful.

Ryan has been amazing at giving me the evenings to run. And while I can’t do anything but gain weight, it has been very therapeutic mentally for me. Those evenings have been, along with my monthly meeting with a mentor, and then our book club that’s been meeting for the past six months. It has shoved me back into reading, where now I want to do nothing else at night except read. A friend’s therapist told her that reading activates the same part of the brain as hypnosis so is a great way to “self-medicate.” But the book clubs! We’ve been choosing restaurants/flavors relating to the books and it’s so fun. I love the different personalities and we’re at the point now where no opinion goes unsaid (I kicked that off with my book choice that no one liked, ha!)

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Our first night. When I made everyone wear name tags and answer an ice breaker question. That lasted one time.

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And Ruthie has already asked when we can do a book club together. The other night she wanted to lay in bed with me while Ryan worked in the living room. So she got her reader books, I got mine and it was so comfortable and exactly what I’d hoped to do with my child. I told her once she gets into 2nd or 3rd grade we’ll start it up.

18 May 2018

In our makeshift creek again today. 😆 We are the epitome of trash and I’m happy they’ll one day say, remember how we’d play in that big puddle everyday?

I struggle with guilt every darn day. And not to sound one-uppity, it’s a 100 million times worse than regular ole mom guilt. With a special needs kid, you can tell yourself at any second of any day that you should be doing more with them: working on standing up, walking in her walker, practicing her words. You can spiral so deep into the she isn’t progressing because I’m not working with her any chance I get.

And yet I have to believe that letting her sit in a puddle all afternoon in the sunshine is just as beneficial. I have to or I’ll go crazy and I’m already halfway there anyway.

I have a second blog where I let a literal stream of consciousness flow from my fingertips. Where questions and accusations and love and hatred and shame and pride all come to an intersection of prayer. It always ends in prayer unintentionally. But because it’s easier for me to write than to say, and since i hardly take time to pray, I feel God meeting me in the easiest way possible.

28 apr 2018

I went to my first Celebrate Recovery meeting last night. I really wanted to hole up in the back bedroom and rest, but forced myself to put on makeup and go. When I walked into my church’s auditorium, the first sign I saw said Welcome Home and of course I welled up.

But I didn’t sing. I didn’t clap along and whoop and holler either when lyrics about God freeing us from ourselves crossed the screen. I didn’t go up when many others did, to receive hugs from people actually designated as huggers at the front of the room, so I also didn’t receive applause from everyone rewarding my bravery.

I just stood there.

Me, it felt like, in the middle of so many joyfully broken people, whose arms were outstretched so far to the sides that their fingertips brushed my shoulders, who walked up to loud cheers as they received their tokens for overcoming themselves for a month, 6 months, a year. They high-fived and hugged each other and all I could do was stand there.

Afterwards we newcomers broke off to a room and sat in a circle, to prepare for when we attended the more seasoned groups next time. And as each person passed because they were uncomfortable sharing their “intro”, it became clear I’d have to be the first to go. When they all turned and looked at me, before covering my face with my hands and crying, I said one of the hardest things I’ve ever admitted out loud:

I am a grateful believer of Jesus Christ. I struggle with anger, bitterness, and pride. I’m here today because I cannot find the value my special needs daughter brings to my life besides stress and exhaustion. I am full of hatred. My name is Carolyn. 

If you could also pray for me too.