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.