A few days ago, a Facebook group/blog I follow, The Mighty, posed a question for parents of kids with Special Needs - "What is one thing you wish your family and friends knew about your life?" A lot of people said things like "we want to be asked to do the things" or "even though we have xxx limitation, we still yyy." Overarching responses were looking at the bright side of our lives in the Special Needs world. But despite my normal positive outlook, none of this really rang true for me, and this topic had been in the forefront of my mind recently.
Despite Captain Chaos' cognitive limitations, we have always tried to keep our life as "normal" as possible. I tolerate a lot of his "isms" and "quirks" publicly, in large part to model how to interact with him and accept these sometimes unusual behaviors. But the more and more he closes the developmental gap, the more and more these quirks become more obvious. And here's my mom confession - sometimes annoying. The best example of this is his sometimes best friend, Sleeping Hand. Sleeping Hand is quite literally my right hand. When CC is sensory seeking (which, let me tell you, is not limited to people on the Spectrum), he will squish Sleeping Hand against his cheek to calm down. At night, or when he's needing to chill out, this is sweet and comforting to him, so no big deal. But when we're waiting to sit down at a restaurant and CC starts having an entire conversation or wants to play Hide and Seek with Sleeping Hand, it can be weird. But still, I typically indulge him, maybe winking or shrugging my shoulders at our friends around us.
Well, here's the thing - lately, Sleeping Hand (and a few of CC's similar, although less frequent, odd behaviors) has been driving me bat shit crazy. A few weeks ago, at our favorite Thursday night restaurant, I actually yanked Sleeping Hand off his head and nearly burst into tears with this battle between "I've had it with this" and "I can't believe I'm being so intolerant of my own child." (Also, this was the same night we went to dinner specifically so I could have a glass of my favorite seasonal Peanut Butter Cup Porter, and they no longer had it available. So extenuating circumstances.) And this weekend, I told CC Sleeping Hand was taking a vacation to Texas. But without Sleeping Hand, there will probably be some other thing that will replace it and I'm sure this will not be the last time I've "had it".
The worst part of all this is the guilt I've been feeling over not being 100% supportive of this sweet little boy. The guilt over turning my back on my 8 years of "counting our blessings" or all the other platitudes I hear or even spew out myself to show that everything is puppies and kittens over here. Is any of this the worst thing in the world? No. But it's been weighing heavily on me lately, and I've been trying to figure out where I go with all these feelings.
Then yesterday this great thing happened. While Daddy and Twin Brother went off to all the sports, Captain Chaos and I went to church.
When brother isn't along, CC typically likes to stay with me for the service instead of Sunday School. He loves the music, and prayer, but sometimes "meditates with his eyes closed" during the message. While he napped quietly on my lap, I got the message I needed to help me deal with this recent internal "battle" I've been fighting. In fact, the message was titled "Battles and Blessings." Here is what God and Pastor Sean have to tell us about how to get through them...
1. Proverbs 13:20 - "walk with the wise and become wise, for a companion of fools suffers harm." So basically find your people that will support you, encourage you and help you fight the good fight. I've written before about how grateful we are for our 'village,' and this just reminded me how lucky I am that I do have some very special people in my life that won't judge me for my frustrations with CC, but rather will support me, show compassion, and if I need to hear "hey, you really do over indulge him," or some similar message, they'll tell me honestly.
2. 2 Corinthians 4: 16-18 - "therefore we do not lose heart...for our light and momentary troubles are achieving for us an eternal glory that outweighs them all. So we fix our eyes on not what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."
There's a bigger picture here to focus upon than just this Sleeping Hand. I may not see it all right now, but this is all temporary.
3. In the midst of a battle, be intentional in searching for blessings. Ok, this one is best explained as "search for your blessings using mom eyes." I may have to lift the blankets up or dig through a shoebox full of muddy cleats, but the blessings are in there.
4. Keep a spirit of gratitude. Not going to lie here - I'm having a tough time being grateful for Sleeping Hand. But I could spend the whole afternoon writing about my 'thankful' list. In fact, as I was contemplating this, I couldn't help but think about New Years Day. We were invited to spend the afternoon watching football with some new friends. It's common for families to share their "thankfuls" with one another on Thanksgiving Day, but in this case, we all shared ours to kick off the New Year. And it was kind of cool doing so with a lot of people we didn't really know well, as well as a couple friends who are just like family. What a great way to get a fresh start on 2017.
Throughout the message, I scribbled a full page of notes with arrows and stars and margin notes while balancing my notebook on CC's sleeping head, and I've re-read my notes several times just since yesterday morning. When it was over and the whole congregation was singing again, Captain Chaos popped his eyes right open and we sang and danced to "Blessed Be Your Name" giving our thanks to God for this message I so needed this week.
Listen, I don't know that you have to be considered "religious" to take these lessons to heart. I think the key to all of this is - We all fight battles. There are healthy and maybe not so healthy ways to fight them. Balancing your battles with your blessings may just help you keep your chin up and get through it with a positive result. For me, I'm going to revisit this list when I need it, I'm going to rely on my strong network of support when I need it, and when I'm on the blessings side of the track, I'm going to be the support I can be for my villagers.
And at the end of the day, I'm going to tuck my little people in bed and when Sleeping Hand is needed for a little extra comfort, I'm going to try to summon her (it?) back from her vacation in Texas. But her career as Hide and Seek expert may be coming to a close...
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