- God will do what he wants, and he does not need to explain, apologize, or get our permission to do so. It sounds harsh, but it is so true, and because it is true it can be a comfort. His ways are not my ways, and his thoughts are higher than mine. He does not need to give me reasons why my muscles are weak; he knows the reasons and will accomplish his will through it. I am so thankful that God is God and doesn’t need me to direct or manage him or hold him accountable. He is always good, and I can always trust him.
- Prayer and faith are not a guarenteed recipe for us to get what we want. Another hard truth. Donald Miller has said that there is no formula for how to come to Jesus, and if you think you have discovered one, you don’t really know Jesus at all. I get tired of hearing people say, “Just pray! Just have faith!” I do! I do pray, and I do have faith that I hope has grown a little bigger than a mustard seed… but in praying, I have heard God assure me of the purpose he has for my life in this chair. In cultivating faith, I have learned to trust him even when I don’t understand, and to have joy even in suffering. If anything, prayer and faith have brought me to a place of contentment and peace in this gift (yes, I just called it a gift) God has given me.
- I have been healed. Does that shock any of you? If it does, my parents can give testimony to its truth. I have been in the hospital many times, my life in the balance, and God chose each and every time to save me and restore my health and strength. The doctors have been amazed more than once by remarkable – miraculous - recoveries. Don’t overlook the fact that my life has been spared over and over again.
- One day I will walk. Another shocker? Well, I have this promise that in heaven, there will be no more pain or sickness. I don’t even think I will have the weight of gravity to hold me back – I will walk and jump and run and dance and surf (hey, why not?) better than anyone on earth ever could, in my brand new, god-like perfect body! Why desire to settle for anything less in a mortal body?
- Sometimes, the things we think are important or necessary are not the same things that God considers important or necessary. I see this in the story in Acts 3 of the man at Solomon’s Colonade, who had been crippled since birth, and all he was asking for was money. In his case, God did not consider money to be his problem – his weakness was. In my life, I don’t think God sees my disability as the main problem, or physical healing as the main solution. If I waste my life begging for my muscles to be strong, I will completely miss out on the ways he does want to bless me.
Wednesday, August 27, 2014
Monday, August 25, 2014
The Art of Breathing
It takes a lot of energy, you know - slow, deep breath in, slow exhale until empty, breathe in all that good, salty aerosol. The respiratory therapist named Rex called the mouthpiece for the nebulizer my "peace pipe." I smoke it like a good asthma patient, silently trying to imagine what the moisture-fog is actually doing inside me... I'm told it reduces inflammation in the lungs, so in a way I guess it brings peace to some of the angry and anxious places deep down. So in and out I breathe and pray for the Spirit to bring peace, to ease inflammation, in other places, too.
After the nebulizer comes vibration - shake it up! In the hospital ICU, there was a very fancy bed that vibrated and moved all over... When I was promoted to 6th floor status, the bed was not so impressive, but there was a huge vibration piece that reminded me very much of the buffers used to polish the Tin Man in the merry old land of Oz. At home, we have a thing that looks like a big wand that does the job. In Fort Wayne, my bed can vibrate, so that will do the job. At any rate, my left side gets a nice massage and my voice sounds all gravely if I try to talk. Again, I wonder at what is going on inside of me... mini earthquakes, an unsettling, like tilling the ground to make sure it stays soft and airy. Lord, do this in my heart, too. Don't let it get too settled and hard... keep it good, loose, healthy soil that you can use.
Then I must let the cough-assist machine blast a full lung of air in and suck it back out quickly, and try not to fight it but go with it and allow the force to enhance my strength to cough. Rattle? Wheeze? Squeak? (yes, I have done some squeaking.) Clear the throat, cough again from deep down, deep breath again... four sets of five. Mentally, it is hard to relinquish control over the inhale and exhale... like the daily surrender of my control and expectations and schedule and confidence in self. It is not natural, but necessary. So in this exercise, I pray that I will allow the Lord to move me according to his will, and infuse his power into my weakness.
Who knew that breathing treatments twice a day could teach disciplines that would draw me closer to my Lord... breathing in, breathing out...
After the nebulizer comes vibration - shake it up! In the hospital ICU, there was a very fancy bed that vibrated and moved all over... When I was promoted to 6th floor status, the bed was not so impressive, but there was a huge vibration piece that reminded me very much of the buffers used to polish the Tin Man in the merry old land of Oz. At home, we have a thing that looks like a big wand that does the job. In Fort Wayne, my bed can vibrate, so that will do the job. At any rate, my left side gets a nice massage and my voice sounds all gravely if I try to talk. Again, I wonder at what is going on inside of me... mini earthquakes, an unsettling, like tilling the ground to make sure it stays soft and airy. Lord, do this in my heart, too. Don't let it get too settled and hard... keep it good, loose, healthy soil that you can use.
Then I must let the cough-assist machine blast a full lung of air in and suck it back out quickly, and try not to fight it but go with it and allow the force to enhance my strength to cough. Rattle? Wheeze? Squeak? (yes, I have done some squeaking.) Clear the throat, cough again from deep down, deep breath again... four sets of five. Mentally, it is hard to relinquish control over the inhale and exhale... like the daily surrender of my control and expectations and schedule and confidence in self. It is not natural, but necessary. So in this exercise, I pray that I will allow the Lord to move me according to his will, and infuse his power into my weakness.
Who knew that breathing treatments twice a day could teach disciplines that would draw me closer to my Lord... breathing in, breathing out...
Thursday, August 21, 2014
Throwback Thursday: Svante the Swedish wheelchair
(I plan to post "Throwback Thursday" every two weeks, remembering great moments in my life with a disability...)
It was the end of June, 2012, when I found myself sipping a celebratory iced raspberry mocha at my favorite coffee shop, and do you know why? Because I was the proud parent of Svante the Svedish veelchair!
I had originally planned to name him James Bond - not for the dashing action-packed 007, but for the stout wheelchair man who first took measurements and detailed notes to create him way back in January. I also considered a green-based name like Kermit, because I ordered a green frame. But today the green frame proved to be really too dark and subtle to be worthy of an iconic green name, and James Bond was absent in the delivery room, and I learned he actually had very little to do with its development.
Do you know who was responsible for the development and deep green-ness? The Swedes! And so, since the Swedes get overlooked and underappreciated so much, I decided to pay tribute to their excellence in wheelchair building by giving my chair a Swedish name. "Svante" is a common Swedish boy name, and it means "holy." I had not planned on my first adopted international child to be green and have six wheels, nor for him to be from extreme Northern Europe, but of course, God's plans are often not my own.
Here is the prayer from Ephesians 3 that Svante and I chose to strive to live out fully together:
"And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge —that you may be filled to the measure of all the fullness of God."
It was the end of June, 2012, when I found myself sipping a celebratory iced raspberry mocha at my favorite coffee shop, and do you know why? Because I was the proud parent of Svante the Svedish veelchair!
Do you know who was responsible for the development and deep green-ness? The Swedes! And so, since the Swedes get overlooked and underappreciated so much, I decided to pay tribute to their excellence in wheelchair building by giving my chair a Swedish name. "Svante" is a common Swedish boy name, and it means "holy." I had not planned on my first adopted international child to be green and have six wheels, nor for him to be from extreme Northern Europe, but of course, God's plans are often not my own.
Here is the prayer from Ephesians 3 that Svante and I chose to strive to live out fully together:
"And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge —that you may be filled to the measure of all the fullness of God."
Monday, August 18, 2014
Because no one else has...
Hi! I'm Connie. If you don't know me yet, I am a writer, a teacher, a mentor, a missionary, a sister, and a daughter. I like to sing with the radio, read stories out loud, doodle and sketch, color (yes, with crayons), watch movies, lay on the beach, eat ice cream, take long roadtrips, and build authentic community. I was diagnosed at 18 months old with a neuromuscular disease called Spinal Muscular Atrophy, Type 2. I am now 31 years old. I'm realizing more and more that 31 years is a long time to truly live with SMA, Type 2.
By "truly live" I mean not just surviving, but using my time well - investing in things that matter, loving people deeply, taking risks, and seeking out beauty and joy. I've hit some difficult times that have made me wonder what the point is of holding on to this life... but when I ask God this question, he answers me by reminding me of what fills my days and keeps my blood pumping - Hope. The kind you can't explain.
People have told me for years that I should write down "my story," (meaning about my disability), but I felt like sitting lopsided in a wheelchair was obvious enough and I wanted desperately for people to see and know me past my disability... I wanted them to not even see my wheelchair, to forget I couldn't climb stairs or mountains, to enjoy helping me with things rather than feel obligation. And to an extent I think I've been able to do that. But I've grown to realize it is not good to pretend that I don't have a disability or to minimize it with those around me. It isn't just a footnote in my book, or a prop on the scene of my life, but it is something that greatly shapes who I am and how I live and view the world. It's a gift God gave me, and it has a purpose.
I decided today to start this blog, because no one else has done it, as far as I can tell. There are blogs informing and updating about the scientific advances in research, promoting a cure. There are blogs about political progress and social advocacy for children and families. There are blogs by parents who are learning how to care for their newly diagnosed babies. All of these are good. But I can't find anything that an actual person with SMA has written about how their life is affected by this disability. So here it goes... I apologize if there are sometimes dark or sad things that I post. But I feel like, if they are real then they need to be expressed, so that when there is light and joy, they really are beautiful.
By "truly live" I mean not just surviving, but using my time well - investing in things that matter, loving people deeply, taking risks, and seeking out beauty and joy. I've hit some difficult times that have made me wonder what the point is of holding on to this life... but when I ask God this question, he answers me by reminding me of what fills my days and keeps my blood pumping - Hope. The kind you can't explain.
People have told me for years that I should write down "my story," (meaning about my disability), but I felt like sitting lopsided in a wheelchair was obvious enough and I wanted desperately for people to see and know me past my disability... I wanted them to not even see my wheelchair, to forget I couldn't climb stairs or mountains, to enjoy helping me with things rather than feel obligation. And to an extent I think I've been able to do that. But I've grown to realize it is not good to pretend that I don't have a disability or to minimize it with those around me. It isn't just a footnote in my book, or a prop on the scene of my life, but it is something that greatly shapes who I am and how I live and view the world. It's a gift God gave me, and it has a purpose.
I decided today to start this blog, because no one else has done it, as far as I can tell. There are blogs informing and updating about the scientific advances in research, promoting a cure. There are blogs about political progress and social advocacy for children and families. There are blogs by parents who are learning how to care for their newly diagnosed babies. All of these are good. But I can't find anything that an actual person with SMA has written about how their life is affected by this disability. So here it goes... I apologize if there are sometimes dark or sad things that I post. But I feel like, if they are real then they need to be expressed, so that when there is light and joy, they really are beautiful.
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