I realize I haven’t posted in a while. Least you think I have suddenly gotten a perky new life, I will give you a true story straight from the trenches that are my life…
Good Friday service at church was tonight and I have been looking forward to this for a few weeks now. A brass band, a violin solo, a new baby dedication, singing, communion, friendship, and food. Praising the Lord for taking the punishment for my sins so I can live forever in heaven – his very personal gift to me. As usual, no one in my family wanted to go to church with me. But because I’m “the momma” I can at least make the younger ones go with me. Hey, they’ll see their friends, they’ll listen to a cool concert, they’ll eat snacks. It’ll be fine, right?
[insert snicker, giggle and guffaw]
Daniel, now almost 7, was dragging his feet (and his bottom lip) on the ground as we walked in. I don’t think I’ve ever seen such a pouty face from any of my other children. Five year old Evelyn was being shy and reluctant but she was behaving herself quite well. Rosalie…I can not even describe to you… She was bouncing, rolling around, making noises, touching people, blowing raspberries, taking off her shoes, and talking incessantly. Did I mention that Rosalie has one volume? LOUD. Then there was 3 year old Peter who, sensing that I could not take him out and give him some serious consequences, was mimicking every obnoxious thing Rosalie was doing. Monkey see, monkey do…
This is the photo I was trying to take when...
We got through the beginning part of the baby dedication with minimal fuss. Then just as the Pastor got up to speak I leaned over to take a photo. Peter, all of 3 years old and b-o-r-e-d, decided to get up and start grabbing the camera. I stood up slightly to get the camera out of his reach, and it was at that exact moment that Rosalie decided to do a stealth move worthy of a gold medal! She dived behind us and in a heartbeat she was laying across her seat, my seat and Peter’s seat. WOW was Peter ticked! He started yelling at Rosalie (remember, we’re in CHURCH, and Pastor is talking). I very quickly got him to quiet down (in my mind it took forEVer). As Rosalie absolutely refused to sit up I had to physically pick her up – all 70 lbs of her! I felt like I was wrestling an octopus! All arms and legs with a body that went dead weight. Fast forward a minute later when a complete stranger leaned over and made a nasty comment to her (to shame her into better behavior?!)…
“He doesn’t know she is Autistic” I told myself over and over. But as the hot tears of frustration, anger, sadness, and self pity welled up and spilled over, I felt the full weight of my situation. I am mom of many children with diverse and complicated needs and challenges. Those who know my family can sympathize, but no one can truly empathize. I have a few friends who know what it’s like, but those are mostly online buddies that I don’t ever get to sit and chat with over coffee. I feel very alone in this struggle.
ALONE: lone, lonely, lonesome, single, solitary, solo, forlorn, friendless, isolated, secluded, withdrawn, quarantined,
segregated, separated, detached, disconnected, abandoned, adrift, deserted, desolate, forgotten,
After the band played and a few other musical numbers played (which I whole-heartedly enjoyed) I was D-O-N-E! I could not handle the wriggling, poking, spitting, obnoxious noises, incessant questions, and disapproving looks. Not one more kick. Not one more raspberry. Not one more poke in the back of my head. And Lord I am so sorry, but I could not handle one more kiss on my arm. I know that sounds insane (you can’t handle a kiss from your Autistic daughter?!). It’s hard to explain: With Rosalie, it was a power struggle. She would violently grab my arm and pin it down and kiss it, but not just a kiss – a big long, hard kiss that was thoroughly unenjoyable. After literally wrestling my arm away from her for about the 57th time I was in ‘touch overload’. I was truly worried that she was on the verge of biting me – she does that when she is overwhelmed. I gathered up the 4 children I had with me and walked out right in the middle of the service. The Pastor came out to me in the parking lot and was so sympathetic. I am very blessed – our church has many people who help me out when the children get out of control. This night was just a totally different kind of service, presented by a ‘sister church’. So the people who came tonight were not our regular Sunday morning worshipers, many of whom who I can count on to help redirect the children when they get ancy.
I am choosing to be thankful…
I am thankful that we will be receiving a new member to our family. Molly, Rosalie’s service dog, will be coming to live with us in less than a week.
I am thankful that those who used to criticize me and give me parenting advice now realize that Rosalie is not just a poorly behaved kid that lacks discipline.
I am thankful that none of my church family ever, ever, ever make nasty comments to her – or me!
I am thankful that I can go to church and that my church family is loving and kind and helpful.
I am thankful that the Pastor of the church left during the service just to make sure I was ok!
I am thankful for Jesus dying on the cross and raising again. He’s not just some character in a stuffy dusty old history book. He is alive, living in heaven and waiting for me there. He listens to me when I cry out to him, he loves me whether I’m making good or bad choices, he is here for me no matter what situation I’m in. He’s not some ‘mystery force’ out there that I can tap into and control… He is the Creator of the universe who has chosen ME! Very personally. Very intimately. “Before you were formed I knew you” he said. He KNEW me. For that I am thankful.
I am thankful that Rosalie is able to understand in her heart what God is all about. She may not be able to verbalize it, she may not show it, or even mentally understand what being a Christian is all about. But I am positive that the Lord can talk to her in a way that she understands, deep in her heart.
I am thankful that Rosalie didn’t die 12 hours after she was born when she stopped breathing. At 2 weeks old. At 5 weeks old. And I am thankful that she did not die any of the times she had a seizure in her sleep because for some reason I was right there to pull her head out of the vomit soaked pillows. For that I am eternally grateful.
You knew what you were doing when you put this family together – you gave me each one of my children, and allowed them to be unique, special, and yes, even challenged. You have a plan for each and every one of my children – and that plan begins with me. You see past all the walls I have put up to protect myself from heartache. You to see how hard I try to be a good mom. To do the right thing for my children. You see the critical people in my life, and you love them too. Thank you for being here to help me through all this. Thank you for your kindness to me when I need it the most. And mostly, thank you for loving me enough to die that painful death just so that I can live with you in heaven.
In Jesus name, Amen!