Sometimes My Brain Hurts

I’m tired. Not the sleepy kind of tired…or the exhausted kind of tired. My brain is tired. It hurts. So much going on right now…so much emotional crap being thrown at me from every conceivable place…well not “crap” but y’know.

Someone asked me yesterday if I was really glad that summer was here so that I could have my kids home with me. After I actually laughed out loud I replied, “Yes and no. I’m not a great stay-at-home mom.” Deep down the honest explanation would have been way too hard for her to understand and I didn’t feel like trying. Not everyone cares to know.

Colin has been off his meds for about three weeks. Due to, in part, the fact that he’s scheduled to see his Pedi for a med check and I always take him off a week ahead of time so that we can discuss the differences on/off the stimulants. Butttt….I had to cancel the appointment and am playing phone tag with the office to get a new appointment time. Meanwhile…Colin begins the “Big Spin”. The Spin that doesn’t end.

He exhausts me. Without meds, C is on a constant quest for stim. Tactile stim is his gig. While most mothers would die for the endless hugs and incessant kisses they just make me sad because I know why he’s doling them out. Him and Albert…the fearless stuffed dog who tells me more about Colin than Colin does. Albert goes absolutely freaking everywhere with us!!

“Albert wants a kiss”
“Albert is lonely, will you sleep with him?
“Albert will miss me, so can he ride in your car today while I’m away?”

Albert was at the petting zoo with us today for exactly nine minutes before I’d had enough of Albert needing to feed the ducks one pellet at a time. We decided Albert was tired and should nap in the car for awhile. Then I figured out that Albert is part of his tactile stim need. Once Albert was gone, C decided that putting the little duck food pellets in between his bare toes so that he had 8 pellets stuck in his own little webs was the new “good feeling”. I saw someone walk by and grin while he did that…like it was cute. Maybe to them…to me all I thought was “Please God. Not again.”

The most exhausting thing is the non-stop one-sided conversation. A diatribe on Mario or Sponge Bob I can handle about once a day. Right now…it’s constant. I’ve taken to telling him that he’s got three minutes to talk or he gets to tell me three facts about whatever the current obsession is. (It’s a new rule…should work right?) And then my heart breaks because I realize that we’ve talked all day long with each other and not once has he initiated a conversation that had anything to do with anyone else’s interests or feelings. He’s just researching the facts, Ma’am.

I try to find the fun and crazy things about this Asperger’s Beast most of the time. There are many of them…we giggle a lot and love this little man to death.

But tonight I’m tired. My brain hurts. I need a little bit of a vent…thank you very much.

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We Can’t Fix This.

Listening to the Hospice doctor speaking to Fay and I today, I was reminded how serious the job of helping someone die really is. We had our first Hospice consult on Friday last week. Six days later, we’ve had 4 scheduled RN visits and one highly unscheduled visit when Charlie fell. We’ve had two social work visits. Today, Dr. Playfoot came here and stayed until we were ready for him to leave. Nearly 90 minutes.

He cared, he talked, he asked, he questioned, he looked, he examined and observed. But most of all, he was a human treating a human. Not a clinician treating a symptom.

So often in the medical field, we want to fix the thing that bothers our patient by throwing medication or therapy or tests at them. For nearly 30 years, Charlie has been rescued and sustained by an ever-increasing number of medicines. New surgeries, fake heart valves and blood tests. He has a neurologist, cardiologist, urologist, endocrinologist, podiatrist, internist, gastroenterologist and a family doctor who shall remain nameless because he’s the most incompetent physician to walk the earth.

Now, he has a hospice team who will save him from blood tests, unnesecary pills, and stupid ideas of physical therapy. He has a team of people who care about all of us and are willing to help him live comfortably as long as he wants. They are also willing to help him die comfortably when he decides to give that a try.

They are the first people to ask Andy and I how WE are doing.  The social worker stopped by unannounced with information on how the kids can deal with this.

We can’t fix this.  Fay wants to try, but we can’t.

Today she found out that no one can fix it.  Dr. Playfoot told her that he can’t fix each symptom…we’ve lost part of this fight to PD. 

Maybe she’ll get it.

Private Tears

I probably shouldn’t blog this stuff, but I’m not sure where else to put it. Since people we know and are close to read my blog, it’s a little bit unnerving sometimes to bare my soul. But, writing is my therapy and this is my outlet. It’s personal, private stuff put out there for the world, I know that.

My daughter turned 9 years old a few weeks ago. She had been looking forward to this birthday like never before because finally we were giving her a birthday party. I broke my promise last year to let her have a party when she turned 8 and she had never quite forgiven me. Let me tell you, this 9th birthday party was to be the bomb!

This past Saturday, fifteen little third grade girls, my sons and one friend of Liams, three adults and two ice cream cakes were scheduled for a 1:00 pm start to a swim party at an indoor water park.  At 3:00 Saturday morning, Erin came to my room with a belly ache. By 6:30 she couldn’t stop crying and was so exhausted from no sleep. At 9:45 she puked. No fever, no illness, not a sign anywhere of germs or contagions.

By party time, she was “fine.” One small episode of barfing during the party (no one noticed), otherwise she did great and we all had a lot of fun! She scored some awesome presents, including five new Webkinz. I’m a little jealous; I only have three. After the party, she slept for awhile and then went to bed early. Slept all night on the floor of my office so she could be next to our room. The belly pain began again in the wee hours of Sunday, and she stayed home from church with her dad. By lunchtime, she was pink and perky and ready to go.

This hasn’t happened to her for a long time. She has abdominal migraines/cyclic vomiting and there’s no real explanation for what precipitates these episodes. Her belly aches do seem to be worse when she’s worried or if something really exciting is coming up. Like Christmas, dates with mom or…her birthday party.

These cycles, coupled with her violent temper worry us enough that we’re meeting with a counselor this week to see what she says. Play therapy. Erin doesn’t know yet and she won’t be going with us. This is for grown ups to talk. We are actually quite concerned about the road ahead for Erin and what we’re going to find out. She frustrated, angry, worried, overwhelmed and tired. She’s depressed. I was a clinical pediatric nurse long enough to know she’s not behaving “normally” for her age.

We’ve got a few good ideas as to what’s bugging her; we may never know for sure. Nothing is simple.  I know too well what depression’s murkiness feels like.  I also know that we can do nothing to fix this. God is fully in control.

What a long strange trip it’s going to be.

Waitlisted

So…I have been waitlisted on my road to education.  I did not register for class in a timely fashion so now I have to wait. The big problem is that classes start in about two weeks and I don’t know what I will be doing yet. My first choices are Contemporary Problems for Christian Leaders and Worldviews.  These are both required first year classes and I figured I’d get them out of the way first…but maybe not. If I don’t get in, I’ll have to choose something else at the last minute I guess.

I am not a patient person. I know this and so do others around me. I am, however, getting better at waiting. I am actually quite impressed with my lack of anxiety about this. Maybe it’s because I have twelve hundred other things going on and I’m simply not allowing time to care. I am, after all, a mother of young children, a wife, a commissioned saleswoman and a daughter-in-law to live in parents. No stress, pressure or busyness in my life! HA! Who has time to get worried?

Hopefully by May 7th, though, I’ll be off on the road to higher learning. It’ll be a long, long time until I am done. I once had a goal of completing my Master’s degree by the time I was 30. Now…we’re hoping for the Bachelor’s by the time I’m 40! Boy…life changes things, doesn’t it!

Thomas The Tank and God STOP

I would like to close myself up in a room for about a week. Or sit at the end of a pier on a misty lake in an Adirondack chair with a blanket around me. Not alone though. Surrounded by books, pencils and all the notebooks I can fill. And my laptop. I have a friend who also just had surgery for which recovery is long. She is not allowed to speak for weeks afterwards; she’s off to the mountains to be alone and read. The idea is that this will speed her recovery. I’m only mildly envious of her.

Yesterday I cried harder than I have in a very long time. One step forward; then flat on your butt. The story of my life sometimes. The surgeon said everything looks great but I need to take it easy for at least six more weeks. He wasn’t clued in before the surgery to the degree of damage I had in my spine. Therefore, recovery will take longer than expected. He’s also not clued in to the fact that my brain will implode if I sit here much longer doing little, gaining weight and surfing the web. I also need to provide for my family; we are a two wage-earner team and that’s not negotiable. It also means that I need to wait to start school, which is the one thing I am most disappointed about. I was already pushed off until March; now it’s at least May. So I need to make some decisions and I was feeling mighty overwhelmed.

So, I just bawled for a while. It seems like everything good happens to the other guy. Things always go perfectly for someone else. No one else has any problems and no one else has any pain. Know what I mean?

Then, my young son (yes, him of the sweet sleep) wanted to watch his new Thomas the Tank Engine Movie. The theme song of Thomas is called “Every Cloud Has a Silver Lining”. Leave it to my Father in Heaven to decide this little child had a lesson for me. I listened to this whacky song for the first time the whole way through. When it was done, I felt better.

I’ll find my silver lining. In each of my day I look for Godstops. (This being a word I learned from Beth Moore.) STOP=Savoring The Observable Presence. A conscious effort to find obvious physical signs of God working in your surroundings. Thomas the Tank Engine and his friends were my Godstop yesterday. I didn’t see that one coming.

I so clearly see the beginning shape of the ministry that God has laid before me. Why do I think that NOW, all of a sudden, He’d change his mind?! This little bump in the road will not stop me from reaching my goal. Oh, ye of little faith! OH ME OF LITTLE FAITH! Good grief! When will I stop wallowing in the mire of self pity and get on board with Thomas and Friends?

Matthew 6:25 “Therefore I tell you, do not worry about your life….(SEE!)….what you will eat or drink; or about what you will wear…”(As of today, one pair of pants fits me again! Really.)… 27 “Who of you by worrying can add a SINGLE hour to his life?”

He promised.

I just can’t forget it.