I can officially say at 6:00 p.m. this evening this household is done with summer travels minus a little vacation Nate and I are taking in two weeks. Nate is on his way back from STL area where he led worship this morning for his mentor. He texted me before the third service this morning and said to pray for him. His voice was totally shot and could barely talk. He coated his throat with more ginger tea and honey and finally got it working a little better. It looks like voice therapy is in the near future again.
Sunday, July 22, 2012
A Little Embarrassing
I can officially say at 6:00 p.m. this evening this household is done with summer travels minus a little vacation Nate and I are taking in two weeks. Nate is on his way back from STL area where he led worship this morning for his mentor. He texted me before the third service this morning and said to pray for him. His voice was totally shot and could barely talk. He coated his throat with more ginger tea and honey and finally got it working a little better. It looks like voice therapy is in the near future again.
Tuesday, June 26, 2012
Hope for an Autism Day
My husband I have a code for our hardest days of parenting a child with special needs. We call them autism days. It's an autism day, I say, and he instantly knows everything there is to know about how I'm feeling. It's shorthand that I'm sad and perhaps a little tired but mostly just sad. It's a sensitive sadness, a familiar sadness, like a wound that's mostly healed and often forgotten, but unexpectedly gets reopened. Oh yes, I tell myself, I forgot. This isn't going away.
On Friday, my son finished a week at camp, which in itself is a feat of God's grace and a testament to where we are and to where he's come. I went to collect Will and his suitcase of stinky clothes at camp, arriving in time for singing and cabin awards. While the entire camp, stuffed into the dining hall, sang and cheered, we parents stood with our noses pressed into the screen windows trying to catch a glimpse of our children belting out worship songs. I found Will immediately and marveled as he participated in the hand motions and chants.
The worship leader called out the name of the last song before the campers dispersed for cabin awards: Lean On Me. Initiating the ultimate Christian camp experience, he urged all the campers to interlock their arms and sway as they sang. Will's fellow cabin mates enthusiastically obeyed, and Will, standing in front of them all, tried to get into the chain of boys, but they refused his entry. He tried again but was denied a second time. Finally, he put a hand on the shoulder of a girl closest to him, who looked at him nervously and started uncomfortably giggling.
Will's face said it all. He knew he had been left out. He knew it was an awkward moment. And he knew that he had done something wrong socially, but didn't know what it was. He looked toward me with flushed cheeks and tears in his eyes. I smiled and gave him a thumbs up, wanting instead to reach through the screen window and fold him into me.
And there it was--the familiar sadness. I knew I would have to wrestle with it in my heart the rest of the day. Though the song was a small thing and could likely be explained away, those small occurrences and difficult days are like keys to Pandora's box for me. Pain and suffering take me deep into the recesses of my heart, my theology, my faith, and my perseverance. Autism days provide me opportunities to straighten it all out once again, like ironing out the wrinkles after every laundry cycle.
On the ride home, I listened to his stories about camp, which took approximately three minutes. We played the question game, where we took turns asking each other questions, primarily so I could get more out of him. He asked me trivia questions from our Bible on CD, and I asked him how he felt during the last song. Embarrassed, he said. Everyone gets embarrassed, I said, and I told him times that I'd felt the same way. You know I love you? I asked. Yes, he said, and then we were silent.
As we drove on, I let him play his coveted video games, and I listened as David Crowder sang on my headphones: Wherever you've been, He's been there. The words stood out, but a part of me rose up, bucking the truth of that statement. I'm sorry, God, but have You really been where I am? Have You parented a child with special needs? Do you truly know what it's like?
He spoke clearly, with grace and empathy, into the deepest parts of my heart: I have not parented a child with special needs, but I know how you felt today as you watched your son. I watched as My Son was bullied, humiliated, misunderstood, mocked, physically tortured, and murdered. My dear, precious Son, was rejected before My eyes. I know that sadness and can empathize with you. You do not walk this road alone.
I remembered then that the Father and the Son were able to endure such difficulty because of the outcome, because of the joy set before them. Perhaps I could endure as well or, even better, embrace this road I'm walking, for the joy set before me.
I reached to touch my son as my comforted heart simultaneously bowed in surrender to my Father. With hope from a Father's heart, He re-bandaged my wound.
Monday, May 7, 2012
A Birthday to Remember
Thursday, May 3, 2012
A Fragile X Post
I know this title has nothing to do with my surgery.
But, in a way, it does.
Read on.
We have received so much help while I have been down post-op. We've had meals brought in, caregivers for the kids and family to care for me.
We are so grateful.
But, we also tend to feel a bit guilty and try to do what we can on our own, so when we realized that Baby still needed her prescription filled for her sinus infection we thought that I would be able to handle Baby and Brother at home while Marc took Sister with him to Harmon's to get the medicine. Harmon's is a grocery store with a Pharmacy inside and Sister LOVES to go to the store.
While I was here at home helplessly listening to Baby attack Brother downstairs I kept trying to muster up the strength to walk down stairs and see if I could bribe Baby away from Brother because I knew I would be able to do the usual "heave, ho" of lifting her up and off and away from the temptation of pulling his hair and biting his shoulders. But, I didn't have enough strength or will power so I just listened to him whine hoping he would finally get his whits about him, stand up, pick her up and bring her upstairs.
Thankfully, he did.
He came upstairs with Baby in his arms, face reddened and a look of exasperation... and pride. He was very proud of himself for handling the situation on his own. I was very proud of him too.
I told him to bring Baby over on the other side of the bed with me and maybe I could get her to watch a movie with me or something.
Brother went back downstairs and I was getting a movie ready on my laptop to entertain Baby.
But, Baby hasn't been able to have access to "attack" me for at least 3 days and just couldn't resist any longer. She went for my face first and I was able to hold her off a little while I was trying to get the laptop off my lap so I could get in a better position to hold her off and then she noticed my weakness and started going at me full force, teeth bared and legs flailing.
I could feel my stomach muscles straining trying to to keep her from hurting me but I can't sit up like usual and have to roll to my side to get up so, of course, she held on tight as I rolled to my side and then because of her extra weight I couldn't get up. I started to panic because of the pain and I didn't want to ruin any of the work that had been done so I reached for my phone and tried to speed dial my neighbor and there was no answer.
And you have got to remember that I have a "piranha" child on me this whole time.
I finally get her off of me, don't even remember how, I think I did some sort of dive-roll off the bed thing and then decided that laying down while I was alone with her was not a good idea. So I sat at the kitchen table while she ate some cookies and I waited for Marc to get home to relieve me from the experience of being home alone with Baby... (Really how do you not laugh when you reflect on how crazy Our Life can be at times? Like "home alone with Baby" should ever cause any worry... tee hee!)
I see the red car pulling up to the garage and a wave of relief flows over me.
Then, I here the blood-curdling screaming come from the garage up the back stairs.
Sister comes in red-faced and crazed screaming that her umbrella is broken.
???
(Side note: Sister loves going shopping with us, but sometimes we forget that that means she loves shopping because she thinks it always means she gets to buy something.)
Marc comes in looking a bit frazzled yet calm.
He was trying to explain to me what had happened but, Sister's incessant screaming didn't allow for a friendly adult conversation so we just moved on to the process of calming Sister down which entailed swinging in the hammock, rubbing her face and rocking and reading.
Marc was finally able to tell me about his experience with Sister at Harmon's.
He went straight to the Pharmacy and gave them the prescription and was told it would be 15 minutes. So he and Sister wandered about the store just "shopping" around (because that is what Sister loves to do) and Sister found an umbrella that she liked. Marc made sure to inform her that they would not be buying it, but they could still look around and spend time together while they waited.
Finally the prescription was ready and they went to pick it up and then leave.
Sister would not leave without an umbrella.
Marc said they could go pick out a treat instead.
They walked to the other side of the store to get the candy all the while Sister is holding onto to "her" umbrella desperately yelling that she wants the it. By this time they have drawn a lot of attention at the store. On-lookers wondering what is going on.
Marc tells her that she needs to put the umbrella away and she can choose to have or not have a treat instead. She is still yelling and screaming and stomping and flailing. He sees that there is no talking any sense into her so he calmly takes the umbrella away from her and picks her up and proceeds across the store to the exit.
All this time she is hitting him, kicking him and then she grabs the sunglasses off his head and throws them to the ground. He calmly picks them up and puts them back on all while holding her during her fit.
Then she grabs his sunglasses again, but this time, twists them in from of his face until they break and then throws them on the floor.
Marc again, while holding her, bends over and picks them up and throws the pieces in the garbage on the way out the door.
She is still screaming once they get out to the parking lot and trying to run back into the store to get her umbrella while he is trying to unlock the car.
She won't cooperate getting in the car so he realizes this looks pretty strange as he is trying to shove her into the car and it wasn't helping her calm down so he takes her in his arms, sits in the front seat and rocks her till she calms down.
As he is rocking her two store employees approach him and tell him how impressed they were with how calm he stayed during the whole ordeal and also expressed to him that there were some patrons who were asking the employees to call the police because of the disturbance. So, I guess the employees came out just to double check to make sure that Marc was not a kidnapper or abusive. I am still impressed with how calm Marc is about the situations with the kids. It is not easy.
I am sure people at the store did not know what to think of the situation he was having with Sister. I am positive that it just came across that she was throwing a tantrum about not getting an umbrella that she wanted. They have no idea, in general, that she is perseverative and does not understand, fully, the world around her.
I am sure that most people who witnessed the occurrence will just rehearse it to others as a severe tantrum and not as a overstimulated, hyper-aroused and out-of-routine-while-her-mother-is-re-cooperating-from-surgery individual with Fragile X Syndrome. That's why I wish, so badly, that we could raise more awareness about Fragile X Syndrome and the affects it has on different people.
So, both Marc and I had a our fair share of frustration last night and we both came to realize that we do need the help while I am healing. I just hope that I heal a lot faster than I seem to be.
I will post soon more positive experiences (because there have been many), I just wanted to write this one down before I forgot and I can finally look at the computer screen without seeing double (smile).
Tuesday, April 24, 2012
Story Time/PTA/Small Group
Tuesday, April 10, 2012
Easter 2012
Tuesday, April 3, 2012
Ministry Thoughts
This is when we become ineffective because we take our eyes off the prize. Doubt seeps in and we start asking, “Is this really what I am supposed to be doing? Lord, I think you may want to rethink this one.”
Here is what I know I MUST do to survive the calling of ministry? (And believe me, it’s a calling.)
Block out time to retreat from the noise. That can mean a number of things, including going into the bathroom, turning on the fan, and asking God to direct your thinking, sitting on the floor of your closet…with the door closed, sitting in your car in the garage (with the engine off!), any place where you can be alone with your Creator.
Even Jesus retreated from the crowds. He withdrew to spend time with the Father. Rest assured that unless you take some time to retreat and find rest in the Father’s eternal promises, your vision will become blurred and your mission skewed.
God does not call for perfection, He calls for action. Faith in action. Don’t get so distracted by the earthly master, the people you are serving, that you lose focus on the true Master. He has created each of us with such great purpose and worth. If only we could see a fraction of what He sees, we would be overwhelmed (in a good way.)
Do your best and then take time to rest. Invite the Father into every part of this day, knowing that He is more than capable of exceeding our expectations in using us to further His kingdom. Perfection is not required or accepted, just willingness and availability.