Some honesty.

Casey’s going through a rough spell where he’s really volatile. He breaks down and freaks out over the smallest things. Then the freakouts last for hours and hours. It’s all I can do to keep him from attacking his brothers or me. Sometimes, it’s all I can do to not hide in my bed with a pillow over my head and hope that it all sorts itself out without me.

It’s times like these where my body aches from the inside. Where the rigors of just daily life are too much to take. Where I can’t fight the sadness and sometimes the anger of how different things are for me. How hard. Autism is hard. It’s always been hard. Down syndrome is hard, but it’s a rewarding hard. Abby’s easy and everyone loves her and treats her like she’s the greatest thing ever. With Casey, the rewards are a lot fewer and farther between. As are the people. Autism is scary. I don’t blame people for keeping their distance in the worry that something might set him off or that they might do something wrong. But there are so many days I just wish he was treated like the rockstar that Abby is.

These are the days that I resent being called a “hero” or being told that I must be someone great to have had God send me these special kids.  Sounds like a crazy thing to resent, huh? I know VERY WELL that people who say this mean the absolute best. They are trying to make me feel like I am someone with special powers to be able to handle what life has handed me.

I am not.

I’m a regular mom in an irregular situation. I don’t like being called any of those things because it puts me on an “impossible pedestal” as another mom called it. It jams me into a mold that I just can’t fit into. Because there are days where it’s too much. Where ANY mom would want to walk away. It makes me normal.

Sometimes I feel like people say that with the feeling that because I’m “special” I don’t need help. I’m going to let you in on a big secret of mine and of MANY other parents of special needs kids: We need help. We need so much help. We very rarely get what we need. Or even close.

I need help. The respite screeners came over the other day. They asked me what I needed as far as care for Abby. All I could think of was the care I needed for me. I hadn’t showered in two days. My nerves were frayed. Lance was away on business, my house was a mess and Casey and Peyton were both laying at my feet completely pissed off that I had a meeting when they wanted to get on the computer and have some pink milk. I choked out the word “respite” and at the same time held back tears. Until my throat got all sorts of sore. I’m not sure why that happens.

I’m not a supermom. I don’t have any plans on becoming one. Please don’t label me that way because I absolutely cannot live up to that expectation.

ha ha. Lower your expectations of me, please.

I was thirteen when my dad passed away from cancer. I remember so many people telling us that God knew we could handle this trial. I remember thinking, “What do I have to do to prove to God that I absolutely can’t handle such trials so I never have to go through something like this again?” People said that we were special. That God must have really loved us to allow us to go through such a thing. I’ve heard the same sort of things from people around me about the situation I’m in now.

If it’s true, I sort of wish God didn’t love me so much.

I need to go now. Abby is getting tired and hopefully she’ll sleep (here’s proof that I’m not a supermom- last night she woke up screaming again and was on her way to a full blown asthma attack and I seriously thought, “Dammit baby, you and your not breathing is RUINING MY SLEEP!” There you have it.).  Most of you haven’t met me in person. Most of you don’t live close enough to me to come and give me a break. I know you would, too. But here’s what you can do instead. You HAVE to know someone with a kid with special needs. I don’t care if you don’t know them well. Just seek out that mom and tell her when you’re coming over to watch her kids so she can take a nap, get some lunch alone, whatever. Give her a break.

So please, for me, find the mom you’re thinking about right now and help her. Please. She’ll never forget it.

13 thoughts on “Some honesty.

  1. Here's why I think you are awesome, Lexi, and why I read your blog. Because you are honest. You have never once made motherhood sound easy or fun, because it's not. You never claim to be SuperMom, because every mom is just MOM, struggling to survive another day in her life. Whether you have one kid or 20, with special needs, or just "special", it's freakin' hard for ALL of us, and that's OK. I remember every time I read your blog that it's normal to lay in bed and think "Damn it, kid, your stupid puking is NOT going to ruin another nights' sleep", and it's normal to lock yourself in the bathroom to cry for no reason other than it's another day. You remind me every time I read your blog that I am not a bad mom, I am just NORMAL. It's healthy for me to read your blog after being bombarded by the guilt-inducing crap about motherhood being so fulfilling, and wonderful, and every minute a joy. So THANK YOU for being honest, for not sugar coating it, for being "Normal".

  2. I'm new to your blog but I love this post so much. I wish I could send it to everyone I know. With that being said, I'll send you a virtual hug and hope that you get some rest soon.

  3. You know they used sleep deprivation in concentration camps dont you?! You post brings back memories of someone that wasnt afraid to tell me like it is. I like that you can say it. Many of us keep trying to wear all the hats and keep having to be reminded that it just simply wont work. Offer yourself some grace daily, Keep your eyes set to the eternal things- the stuff that really matters. Motherhood is hard, I agree with you 100% that the really hard stuff really does cause you to really find what you didnt know you had in you….. Really hoping you get the respite YOU need.

  4. I used to pray for patience, then I learned that God was giving me ways to learn patience, and I never prayed for patience again. Thank you for your blog, for fellow Normal mom's dealing with extrodianary situations it's nice to hear other peoples lives are just as chaotic as our own! I will pray that you get sleep tonight, you deserve it:)

  5. Shelby still prays for "her Casey" every day. I can't describe it, but she feels the sweetest connection with him. Years ago, you sent me a card with his picture on it. It has become one of our prize possessions and holds a very prominent place in our home. We love him and we love you, sis. We'll be praying for you and Casey to get some sleep.

  6. Thank you for this post. It makes me feel normal too. And I know how you feel about the asthma/lack of sleep thing right now. I would be the one dealing with both. Makes me just a normal mom, dead tired and weak from lack of good breathing, but still being a mom. barely. I sorely wish I could come and give you a few hours to yourself. I'm gonna say that I will in january. When i can take care of myself again, let alone my family. I am going to call you this week, though. Really really glad I saw you at school Monday! You are amazing. Truly. And normal. 🙂

  7. Lexi, you rock because you are honest. You do an amazing job. If I could swing it, I would fly out to give you a break. Thank you for the reminder to look for someone close by that I can do it for, instead.

  8. i have a mom in my ward who has a special needs little girl. i'm going to talk to her on sunday. that may be the first thing oprah has said that i like.damn trials. if god loves me so much, shouldn't he give me flowers and rainbows and guacamole every day? ONE day we will be happy about it. and it will all make sense. but for now, it's okay to be pissed sometimes. or all the time, like me.love you.

  9. I love this post. It speaks to me on so many levels. So often people tell me they think I'm amazing. And so often I get seriously bugged because I don't feel amazing. And as supportive as I know they're trying to be until they've experienced it they don't get it. So thank you for being honest and for sharing what so many of us feel.By the way you have a beautiful family 🙂

  10. Yes! Exactly! Thank you for writing this. I feel like I have to be super mom all the time. It led me to some dark places back in the day. Love this post!

  11. Lexi – you are an amazing writer. I could read your blog all day long – it’s gut-wrenching, funny, inspirational – all at the same time. Awesome.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s