Sunday, February 05, 2017

green sneakers and perfection

as we were getting out of the car today and rushing into church, i noticed that reagan, instead of putting on his church shoes and socks, had put on his everyday green sneakers untied and he wore no socks. to say i was frustrated was an understatement. why am i so fond of unnecessary pressure and expectations? reagan's brain is an interesting machine. it can be sharp as a tack and remember explicit details and in the next moment not recall very simple and basic things, depending on current distractions or environmental conditions. how reagan looks is extremely important to me. i've noticed with myself and with reagan, people treat you better if you look more presentable. i like to get dressed and wear makeup when i need service in public because i get better response and attention than when i'm in sweaty gym clothes or grubby around the house clothes. it goes a step further with reagan. when you look at reagan, you don't initially grasp that he has special needs. after a few minutes or even seconds of interaction with him, most people quickly figure out that he functions with a different operating system. however, i find that people are more patient with him and tend to not talk to him in exaggerated syllables or juvenile tones if he looks more aesthetically presentable. sadly, that's just how it works. it's a lot of pressure on an innocent boy who lives with zero guile. however, when i saw reagan's sartorial misstep, i snapped at him. i immediately thought of other people's reactions to him or their reaction towards me as his mother. i'm weak. i want him to be universally accepted and respected. 
during sacrament meeting, there was a baby blessing of a baby born with down syndrome. i was trying to listen to the words of the blessing but also reconciling myself to how something so infinitesimally small as the wrong shoes at church was bothering me so much when the father of the baby said that she would be blessed with the opportunity to be married in the temple for time and all eternity. i'm embarrassed to say that me of little faith scoffed at that notion. me, who lives a special needs life, who wants that same blessing for my own child, would scoff at that blessing for someone else with special needs. my faith in what my own son can do and become can be so weak sometimes that i have little faith in the power and magnitude of our Heavenly Father's plan for each of his children. i get well intended comments all the time from people who have little to no experience with living with people with special needs. these comments are meant to be uplifting and encouraging, however, most of the time they fall flat to my ears. "of course reagan will live on his own someday!" "of course he will have a job!" "of course everything in his life will be just like that one inspirational movie i watched one time!" i appreciate the sentiment but people see such a small slice of reagan's life. plus, reagan can be absolutely charming. he's darling! but i wish i could be allowed to struggle. sometimes i just want to hear, "wow. that's tough. tell me how you feel." and that's it!

after the blessing, we partook of the sacrament and then the father of the new baby bore his testimony of how he wrestled with the surprising news of his baby's birth and impending struggles. how he thought he was ready to be in a different stage of his life at this point. that he should be preparing to be having an older family, not preparing for a special needs baby. he spoke tenderly of how people said that baby charlotte was going to a family that she needed. but how in reality he found that they really needed her. that she brought peace and a special spirit into their home. i was immediately humbled because i know that has been the case for our family as well. wonky, green sneakers at church be darned. 

i have a recurring thought when it comes to the resurrection. perhaps i've mentioned it before. we talk all the time about how exciting it will be to see all those with infirmities be made perfect in the resurrection. i've had dreams where i am talking to reagan and he doesn't have autism. they are fleeting and rare dreams but they always leave an impact. the more i ponder the resurrection though, the greater difference will be with me. i will be made more perfect, because i am so much more inherently flawed. when i see resurrected reagan, he will already be recognizable to me. i know his spirit. reagan is already way beyond me. he has no guile. i've been made better by being his mother. he hasn't been made better by being my son. sure, i'm guiding him with the complexities of life, but he has no desire to do evil. 

like noah and nephi, we have been asked to build a ship and we also have to build the tools. we have parts we don't know what to do with. sometimes those parts are people. sometimes those parts are our fasle expectations. sometimes those parts are us and our weaknesses. those parts may just be the most important parts because we have to pray to know how to use them. and like noah and nephi, it will be very difficult, we may question our role and our abilities, but if we have faith in our heavenly father's plan, we will be prospered. 


amy said...

I can't explain what reading this post meant to me this have a gift, Heidi, and even from all this distance over all these years, it blesses me! thank you 😊💕

HJolley said...

What a great post and what a great insight that we--the "typical" people--will have much more changed in us after this life. So true.

Jessica said...

thank you for sharing this. i think you are one of the bravest and strongest people i know. reagan (and the others) are blessed to have you as their mother.

Lindsey said...

This is so enlightening and uplifting. You are a rockstar.