Monthly Archives: February 2014

A Valentine for my Superhero

It Started as a Friendship

Like all beginnings should

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And it wasn’t really very long

Before all the world felt good.

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They say that True Love

Is just Friendship Set on Fire

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And the adventure we have traveled

Has just made that flame grow higher.

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So here we are -still on the road

My Superhero and Me

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It’s been good- but hang on for the ride,

The best is yet to be.

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Categories: LDS Mom of Autism, Poetry | 5 Comments

Courage Quote Monday- Leaning on the Lord

Sometimes I like to try to convince myself to just hang on till the weekend, and then I can rest…silly me.  So I have decided that by Monday afternoon, I desperately need a good courage quote to pick me up and help me get running again.

This one is a tiny bit from an Ensign article, from March of 1991, “Living With Chronic Illness” by Libby Knapp It was incredibly just what I needed today,  and I highly recommend reading the whole thing, find it Here.

“And he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.” (Alma 7:12.)

Leaning on the Lord enables me to find joy now, despite the world’s insistence that “when you have your health, you have just about everything.” In contrast, consider the Savior’s words: “Wherefore, be of good cheer, and do not fear,  for I the Lord am with you, and will stand by you.” (D&C 68:6.)

…I have come to realize that one of the purposes of trials, even those that seem unfair and undeserved, is to prepare a heart to bear testimony that “waiting on the Lord” does make a difference.

“Blessed is he that keepeth my commandments, whether in life or in death; and he that is faithful in tribulation, the reward of the same is greater in the kingdom of heaven. …

“For this cause I have sent you—that you might be obedient, and that your hearts might be prepared to bear testimony of the things which are to come.” (D&C 58:2, 6.)

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Categories: Courage quotes | Leave a comment

Mighty Mini Moments of Magnificence

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Gilbert Temple at Dawn

You know what? Sometimes,  life gets very overwhelming.  (duh)

Not really because of any one bad thing-  just normal life for a spectrum family.  Lately I have had a much harder time than normal coping , tho,’ because of fatigue, etc, of the Mega-Mondo potion size.  But every once in a while, I am able to think clearly.  That’s when I am able to put it all on the shelf,  in the Lord’s hands.  I’m grateful for those times, because being able to let it go lets me get back to being able to feel the Lord whispering peace.  This afternoon is one of those quiet moments;  a wonderful calm after a long day.

This morning started as just normal Tuesday- up at 6, get girls awake and help to make sure they were in clean clothes and ate breakfast, off to High school, then Jr. High then back home before 8.  Totally ordinary. And totally moving thru it all by rote…grateful for rote, because the meds were not enough today.  By the time I got home I was in deep vertigo and heavy fatigue.  I needed to get back to sleep.
As I was laying on the couch, relaxing the sundry aches into a quiet state,  Ryan walks in, and cheerfully says- “Oh- hi,  Mom!   I totally understand your need for a nap, but when you’re up to it, Today would be a really good time to talk about what we need to do to get me moving forward in life.”
After he left, and I caught my breath,  I got up and took a caffeine pill and laid down again, praying for the wisdom and energy I would need very, very shortly… and fell asleep still praying.
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The blessing
——
It wasn’t really a very long sleep; and then I spent some time on the laptop- pulling up bookmarks and finding sites to have on hand… and told him I was ready.   Then- an hour long (maybe more) counseling session–

And it was totally good.   I heard him out on his likes, struggles, and dreams ( I already knew, but he needed to talk it out)  And he heard me out on things I had found so far.   We wandered thru everything– talked about Autism’s explosion curve starting the year he was born, leaving a huge number of early adults just starting the things he is starting… and finding out that if we had known about, and gone the speced route- we would still be finding out that all funding for “therapies” quits at age 21, leaving many to flounder thru how to move forward from there; and how we felt kind of grateful that we are already working out the kinks of finding our way.    (He has decided that he wants to learn sound design, and making his own animations, and wants to learn to produce his own music.)

He also was able to hear and follow, when I told him of my own health, and the steps I am working on to care for that.  And tons of more things—  And it was calm-  Honest, Passionate, and Deep to be sure; but no anger or meltdowns from being overwhelmed, or anything.  Just, well- fully young adult.  Then he listed back to me all the things we had come to the conclusions were the next step… and left with the parting shot of – “I’ll let you work on it, I trust you Mom.”
:O !!!

Later I realized that not only was he as clear headed and calm as he has ever been for the last many years of migraine struggles… but I, too, was totally on my game– clear, focused, and strong thinking…. the kind that feels closest to my fully healthy self–  (you know- the way we wish we felt all the time)  fully in the zone of capable mom and mentor.   Wow, I am so grateful!! — Of course it didn’t last- not even till dinner.  But it lasted as long as I needed,  plus enough extra to carry over into taking a bit of time with each of the other 2 boys, and then wash the dishes too!

Finally, it was off to dance practice… Our ward gets to participate in the Gilbert Temple Cultural Celebration- Didn’t have too many meltdowns this week- in fact, my TeaRose went from the first week’s complete melt over the ear-pain she was going thru ( from the volume of the music;)  to having all the steps completely memorized faster than anyone there besides her friend who takes professional ballet.   Just like Mark is able to do. When I mentioned it, he told me choreographed dancing was were he shined, because there is no choices going on- it’s all laid out in advance, so he could focus on doing it really well… Makes sense.  Oh, and I bought lots of ear plugs.  😉  Even my little bubbly Kydee was able to dance for a great while before her sore leg made her quit.

So- You know– I guess I must be doing at least some things right, cause I sure had a lot of Heaven’s help today.  And  I am so very grateful for it.  Hope you have a great night!

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Categories: LDS Mom of Autism, Midnight musings | Leave a comment

The Price

Hello Friends.

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I am sitting here this lovely Sabbath evening, celebrating a rare event– I have the unique combination of quiet time after the kids are in bed, the last round of hugs and kisses and tucking the blankets is done, and I still have enough energy to think and write!  Woo-Hoo! It’s been a while.

In fact it’s been a long while.  Looking back over my calendar, I find that I have only had one week since Thanksgiving that did not have at least 2, and more often 4, doctor appointments of one sort or another for me or one of the kids.  Some of it has been good- like the flute lessons that have become music therapy for my sweet TeaRose.  That wonderful teacher actually looks forward to it as much as we do.  And some of it was the astounding successes of getting my older boys to get in the car and go with me to get their blood tests that have been ordered a long time ago, but I couldn’t get them to go get poked.  Only a couple of times (fortunately) was it from a new med that did not react well (One sent one of my High Functioning boys down to full non-verbal for a day- that was very scary to me) Mostly, tho, it has been the long slog thru tests and wait for followup slots with the specialists.

But I really am not wanting to write about the price we pay as moms of Special Needs kids. Many times over the last two months I thought I did– but in those moments when I have broken thru the fog of nasty fatigue, I got to pondering a whole different price.  One that I’m kinda frightened of, but one that I really want to have the courage to pay.

It goes like this–

I started pondering toward the end of last year, about the refining abilities of fire, and the power of pain to speed and amplify the things we need to learn to gain the fullest expectations of eternal glory.  And from there,  I started perusing the great women who have gone before me- those of my great ancestors, and those of the world-changing-moments… and the pains that they had to go thru.  Many of them were no different from you or I; just working thru the exhaustion and heart pain of the daily worry about her kids in difficult circumstances.

Take for instance, Sariah, who cared for her family, and carried on thru the beginnings of the Book of Mormon.  She was just such a Lady.  We see her hovering just out of focus, following Lehi into the Desert. She would have had much of the charge for preparing meals, and caring for everyone on a daily basis.  She had done her very best raising her family of boys, instilling lessons of right and wrong as she went about her daily tasks,  but now they were at that age when they need the father’s strong example and voice most.  So she had to just watch and pray as the drama of young men rebellion and testimony building unfolded in the desert heat. I think she felt very lonely and ordinary sometimes.

Maybe she sang as she did dishes, or laughed to keep the tears of worry at bay like I do. I think, like me, she held hard to her faith that the Lord knows what trial her boys needed to grow to their fullest potential. And like me, I think she would have prayed fairly constantly that the Lord would hold her heart together while He worked out His plan for her family.  In fact, she was just being a mom… trying, slipping, and getting the courage to try some more. I don’t think she would have ever thought about the power her influence would be to half of a world for a thousand years and more.

And I thought I would like to be her friend.

Then It came to me as I pondered,  I also want these great ladies to be my friend back.  I want to see them someday, and be comfortable in the relationship of a peer.  Just like in the support groups we seek out- places where we know that the others there understand because they have been thru what we have been thru, stood in the same or similar trenches, we’ve all paid our dues… I want to have the courage to pay the price of a valiant woman like they were– a warrior mother in Zion.  A true friend, with the endurance to stick it out, thru the journey that the Lord has asked me to travel;  to help my own kids make it to the other side of their own desert crossing.

So- as my list of internet bookmarks, and my pile of books of things to learn grows; a new word comes along-  Fibromyalgia.  So far, I have found out that I can blame it for much more than just daily pain, but my memory and fatigue too, among other things.  I’ve also learned that it is another one of those things where genetics load the gun, and environment pulls the trigger (my favorite quote from Dr. Tony Attwood)  or in this case, the long term damage of 24/7 on-call care for the last 20 years did the pulling of the trigger….  Yet I’m ok with things as the stand tonight.  There is an amazing amount of good, in finally having a name for struggles.  It lets me start charting a path of what to do next– and a great weight of the unknown lifted almost instantly last week as the doctor told me.  I feel so much more able to lift up my shoulders into the yoke of the Lord’s errand tonight than I have for a long time.  Ready to be a true friend.

Categories: LDS Mom of Autism, Midnight musings | 2 Comments

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