Tonight Taya told me something. We were reading the scriptures about how Jesus healed a blind man. She stopped part way through and said "Every night in my prayers I ask Heavenly Father to make my Arthritis go away, but it never does."
--- Whoa.... I just about shriveled up & melted & at the same time had the desire to stand strong for her more than ever before. What an important moment. I put the scriptures down & bundled her up extra tight and looked at her, and told her I was proud of her for praying for that night after night because I knew that meant that she believes in Heavenly Father and believes that he'll help her. And I told her how Jesus did heal this blind man, and He has healed others too. And I told her how there are many people, tons of people, ... most people, who have 'hard things' - like Arthritis ... and that Jesus hasn't just taken away those hard things, but that He & Heavenly Father ARE helping those people - especially when those people ask for their help. And I asked her if she remembered what Jesus' Atonement was. And reminded her that Jesus has felt what she feels, that He had a time in the Garden of Gethsemane where He came to her ... Taya. And felt her physical pain. And felt the times where she wondered why God hadn't taken away her Juvenile Arthritis pain. And that it's nice knowing that He, (and a few other kids with JA that she has met too) - know what she is going through. I asked her if it is hard that her dad, Dyllan & I don't have arthritis and don't know what she feels. She briefly answered yes, while fidgeting around and going through a series of 20 different positions during the conversation (as a serious conversation with an almost 5 year old does not equate looking at each other's eyes and sitting still for 10 minutes - I wouldn't have it any other way). Most of all I told her that she could keep asking Heavenly Father to take away her arthritis or just to help her be happy even when her arthritis bothers her, and that he may take it away soon - or later - or never, in this life (I've already told her how she won't have it in Heaven), but that he absolutely knows what's best for her and that we are here on this Earth to learn. And that most of our learning comes through things that are hard. I asked her to think about if she had been the one in charge of teaching Dyllan how to walk, and had had the magical power to snap her fingers & automatically make Dyllan walk - if she would do it, and if Dyllan really would have learned how to walk. She seemed to kind of get my (rough, on the spot) analogy. I told her I love her and I snuggled her and looked in her eyes. And I told her that I wish I could take her JA away, but that I think she is going to teach people great things with it. And that she is going to show people that she can be happy even when her body feels miserable (though her body's misery is not always visually obvious). And that Heavenly Father may really need her to do that for other people.
I don't know exactly how much she digested. She can usually take away quite a bit from important conversations, so I wasn't afraid to give her a full answer. I wanted to write this down because I know she may mull this question over in her mind again. She actually did tell me as I tucked her in, that she asked Heavenly Father for it again tonight in her prayer and that she wishes it would go away. But I think, and believe, that she will internalize bits of this conversation over for years to come (we may have long & abridged versions of it again many times). I remember a talk in church one day a couple of years ago where the woman speaking referred to praying daily for her kids to develop strong personal testimonies of their Heavenly Father & Jesus Christ. I loved that and have often included it in my own prayers since then. Taya & I actually happened to talk briefly about testimony a couple of times this weekend (including in this conversation) - and based on the way she answered some simple questions (with NO pressure/influence) on what she believes or doesn't believe from church - helped her to realize that she already has her very own testimony right now. And that her testimony is what helps her want to ask Heavenly Father for help with her JA in the first place.
I love this girl. I fear sometimes that we have trigger points in our personalities with each other that give us a little more friction than I would like (I know, I'm the adult right?). But I pray that all of the good times we have together each day confirm to her how much I love her and am there for her. And that I would take her JA if I could. I pray that those good times and expressions of love and snuggles, and silliness, and listening, and more - give her a rock in our relationship, while I figure out how to resolve and handle with good character those trigger points of ours.
I am so glad she told me something like that tonight. Because it gave me an extra chance to tell her so many important things. Things that I pray she'll seek, and hold onto, and seek, ... and hold onto, again and again.
Juvenile Arthritis.... there are easier things in life, and there are harder things too.... and we're always trying to find the balance in the way it's handled and talked about in our family - to help her think of it as a footnote in her life, instead of a definition of herself, and as something that she can be happy & fulfilled in spite of - all while trying to show enough plain, simple, oh-so-needed empathy. Empathy without any extra clauses, without babying, or life lessons attached for that matter. Just plain empathy. What everyone needs sometimes. Hopefully I showed enough of it in this critical moment tonight.
(I wrote this as a record more for myself, and for Taya. Don't feel you need to comment.)