As always, anybody who might like to tell their own stories, as some have in the comments to these two posts, please, feel free.

The third part will go up in a couple days.

Too true. I could write an entire chapter on this aspect of being a caregiver. I did touch on it lightly in another post I wrote. Many times, she has needed more than we could give, for one reason or another. There are times my husband and I have been worn out with the effort and couldn’t go any farther — we just had to drop the ball for a while and get some sleep or go out and do some grocery shopping — our version of a date night. We’ve experienced difficult extra-domestic distractions that drew our attention away from her when she needed it. I’ve been slow to notice changes and trouble.

Speaking of the husband, Mattea and I have another great blessing in our lives — her father, my man. In this matter alone, God has smiled on M (and me). M’s dedicated father has stood by her from the beginning, rock solid. He has solved several of her most difficult problems. He was the one who put an end to her years of severe reflux by hitting on the idea of adding multi-culture, whole milk yogurt to her formula (worked for us — might work for others). For years, one or the other of us had been sleeping by M’s side because many nights she would throw up her last meal and somebody had to be there to make sure she didn’t aspirate it. Sometimes it would happen while we were feeding her. The day he added the yogurt, her reflux became a rare rather than an expected event, relieving both M and us of a great burden. Using his background in chemical engineering, he has done all the R & D on the formula we feed her, refining it constantly over the years. He has handled the docs, he spends hours on the Internet researching equipment, diapers, new formula ingredients and reliable sources for all of the above. He makes what are now 70 mile trips to buy her organic yogurt and other special supplies. He goes on tenacious hunts for new music for her. He has given her a reason to speak: “Dad. I want Dad.”

He has developed a home business so that he could be on hand to help with M’s needs and spell me off so I’m not totally housebound by Teah’s care. We’re not rich but we’re all together and doing okay. And when I go to AML meetings or to other writing workshops, he holds down the fort. Mostly. I give him an “A” for effort, anyway. Dealing with M on your own is rough work, especially at feeding times.

He saved my sanity by moving us down to where I could get out into the backrocks and recharge my batteries. Whenever a change or problem arises with M, he’ll spend the hours with me trying to figure out what’s going on and what to do. I would not have survived all this without him.

He has a keen sense for what’s important. Even when we owned a Saab (long, long time ago), he told me I could wreck any of our cars anytime I wanted — he wouldn’t get angry. What a man!

I took this to mean all her caregivers….including her parents. As a parent of a child who struggled with language delays I know I made a difference…..but there were never enough hours in the day to do the research and work with him and fulfill all my other responsibilities. Knowing that your child depends on you and your ability to find creative solutions and make decisions and know what to do is a big responsibility and there is no way as a parent you can do it as well as you want to (which is true about parenting all my children).
I am grateful for the Lord’s guidance (which he gave) and his comfort (which I felt) and the strength (which he gave me). For me the challenges my children have had to face (and me because of them) have made me understand the Atonement more….and my faith in it has grown. In reading what Johnna wrote again, I think that this all happens in such a personal way, at home, when I’m alone, yes occasionally at church or at conference but inside my heart and not vocally and while interecting with people in a large group setting.
The older I get the more I know that others around me have real heartache’s. They don’t always talk about them openly and they shouldn’t have to, but the struggles are there in everyone’s life. We don’t need to go to church and feel like its for people who are perfect.

I am at a loss for words. All I can do is echo your comment that: “the ‘she will nevers’ and ‘she isn’t interesteds’ the majority of her care givers flung at her were not reflections of M’s investment in being in the world but of the limits of her caregivers’ abilities, interest, intuition, and creativity. We had found the edges of their capacity, not M’s.”

I have experienced that attitude, but on a much smaller scale than yours. I think, too, that her capacity is also streched because of your abilities, interest, intuition, and creativity.

Your accounts of doctors practicing their own realm of ignorance is the kind of stuff that needs to be said. I am learning more and more how ignorant I may be, but then as a stay at home mom I get treated that way anyway. Now how about those doctors who mistake their personal opinion for scientific fact? Can you help me find some really heavy language that I can bop them over the head with? I’m not really aiming for understanding here- I’m just aiming.
Now none of you fine doctors get upset. I wasn’t really talking about any of you, anyway.

About this: “I cluelessly, possibly ineffectively, work on my kids’ learning disabilities or whatever their conditions are, and have a certain sense of shame about it.”

I’m not sure what you mean by “shame.” I haven’t had much experience with shame but know people who have, and it seems to me that in many cases, shame is a package someone else has delivered to you COD that you unwittingly paid for and accepted, thinking that you had to. But I don’t know much about it. I do know that, in my own circumstances, if I accept that package everytime it tries to show up at my door it will draw off energy and focus I need for the work at hand, so I shamelessly mark it, “Refused. Return to Sender.” With one of those little pointing finger hands the USPS stamps on such things.

“The other thing is, it is surprising, and hopeful, for me that you say the gospel has been relevant and encouraging in your situation. Of late I’ve felt frustrated, like the gospel as I’m hearing it in church seems to be for those without problems, without suffering, without intractable situations. I really don’t want to go outside, to nonMormon Christianity, but I have been thinking wistfully about the pleasures of attending somewhere else on the side, where they will talk about the nuts and bolts of dealing with life stinks.”

Johnna, your being at the AML meeting suggests you’re interested in language and using it in a meaningful fashion. So maybe you’ll understand what I mean when I say that that language you hear in church that sounds like it’s meant for those without problems is more an artifact of people who have problems not having the language they need to deal with them trying to make their lives fit into what’s at hand rather than it is about what people actually need and want. Believe me, if you say something that gives people the words they need for something they’re feeling, they often jump at it, saying, “I’ve been looking for this!” Everybody needs help.

Cultivating better language will provide people the opportunity to make more of what happens to them and more of what scripture says. One misunderstanding people in general have about language is that it ought to “capture” experience and meaning but doesn’t, at least not to any satisfying degree. Seems like a frustrating trap to get caught in. In fact, language creates experience, which makes it a far more dynamic and living system than we’re used to thinking of it as being. The better the language, the better environment it provides for experience to unfold.

And life doesn’t stink. That fragrance is the odor of expectations getting old and a little ripe.

It seems that despite the terrible hand you’ve been dealt (“you” being the plural form, including your husband and daughter), despite the awful reassurances from those who know better, and despite the endless list of things that will just never happen and can’t ever be, you seem to have figuratively told them all (including fate itself) to go stick it (to put it mildly) and proven them wrong, time and time again.

So I guess it feels like both in my mind: triumphant defiance.

Jon