The Aftermath
I feel as though I should be due for an update after the decision to take a break from doctors and appointments. For a while, I wasn't sure what to post. But now that we are about two weeks out from that decision, life is beginning to settle in somewhat.
After hearing from the neurologist that there were no further tests to pursue at the time, I reached out with a few lingering questions. He was quick to respond to me, and added, "I think it makes sense to keep a rheumatologist and a neurologist in the loop as you move forward." He was more than willing to be that neurologist, and asked me to keep him apprised of any new or worsening symptoms, and to reach out to him as needed. It's an offer I've taken him up on a couple of times as I've worked through managing symptoms and work hours, and I'm very grateful for his kindness and willingness to continue to help us along the way. Our time with him didn't bring us any closer to answers, but both he and the rheumatologist I saw have been wonderful to leave the door open for the future, and that gives us an added layer of assurance.
On the Saturday after deciding to take a break, we had a very frank discussion about what it meant for our lives. Without a diagnosis, there was no longer the hope of finding a treatment in the near future. That, in turn, meant no relief from symptoms (and a likely progression of symptoms that could make things worse). After the months of ongoing discussion about our house and the stairs, we finally resolved that we may not be able to stay where we are. We planned to contact a realtor the next day, and even discussed writing letters to homeowners of one-story homes in our area to ask them to consider letting us look at their houses in the event that they were considering moving. In the evening we sat out on the balcony off of our bedroom. We could hear our neighbors out on either side of us. We watched the birds--and eventually the bats--swooping down over our neighborhood. We knew it wasn't time to leave. We had invested too much here, and we were still invested here. It wasn't time to leave our home. That night we prayed, "OK, God. If it's not time to go, then you need to help us make this house work. We don't know how, but please do something that will let us stay in this house."
The next day we got a phone call from my mom. My grandmother knew of a family getting rid of a chair lift, and wondered whether we would be interested. We took some measurements and discussed it, and told them that (depending on the price) we would love to consider it. They called back and said between them and some friends of theirs, it had been paid for us. The chair lift was ours to have for free, if we wanted it. We were blown away. We have two staircases in our house. We had spoken with a company that makes and installs lifts to get a rough cost estimate. It wasn't even within our ability to consider the amount they quoted. Now we had one provided for free. It would allow me to access the basement--with one bathroom and a laundry room, as well as our family room with the TV. I would have one step at the beginning and end of the staircase to manage, but I would no longer have to climb the whole flight of stairs (which is what has exhausted me all along). Maybe eventually we'll find a solution for the upstairs, but this at least limits my trips up and down the stairs and allows me to move freely between the two levels throughout the day. We never expected such a direct, immediate answer to prayer!
Having that aspect of things taken care of meant that we could, without a doubt, stay in our house. I can't describe the settled feeling that gave us, and gave me in particular. I'd become more and more restless, and I thought constantly about how we could make the house work, how we could find another house, how we could still somehow stay close to the neighbors and neighborhood we love so well. When I finally let go of it, God made a way. And I had overwhelming peace about it. I fell in love with our house all over again, and I'm completely content here. It was a contentment that I desperately needed.
During that same week, my parents asked to buy us a wheelchair. I had borrowed a chair for our trip to Niagara Falls, and we had a rental chair for a period of about a month. But now--in the absence of a treatment plan--we would have a chair to keep. I was able to research and choose the chair for myself, and I found one that not only met all of our needs, but came in red. It arrived last weekend and we tried it out for the first time yesterday. We took the kids to the zoo, and this time there were no limits on how many exhibits we could see. I rode for the whole time (I'm learning to save my energy for the things I want to do later), and we had a great trip. The chair was comfortable, easy to push, and worked beautifully. What's more, I felt comfortable in it. I didn't feel conspicuous or self-conscious. It gave me freedom to do what my family was doing without paying a heavy price afterward. It gave me freedom, period. I have a feeling it will be a gift we use often moving forward.
Someone asked this week how we've been feeling about things. Surprisingly, I don't think we'd taken much time to think about it, to reflect on it. We've been taking things a day at a time, making the choices and decisions necessary for that day, taking the symptoms as they come. I've had some really great days--last Sunday and Monday I almost would have said I felt normal--and some incredibly rough days. But as I thought back over the past two weeks when I was asked about them, the words that came to mind were peace and contentment. Micah and I talked about it this morning, and he equated it to the times in our lives when we were waiting and feeling desperate for something. The times before we knew each other, when we wanted more than anything to find someone. The times when we were trying to start a family, when we lost Annie. We wanted those things so desperately that we were restless in our waiting. It took emotional energy to hope that it would work out, to gear up for what we anticipated would happen, and it was crushing when things fell through. Our past several months have been a similar emotional rollercoaster: every doctor's appointment, test, potential diagnosis brings with it the expectation of something. It takes incredible emotional energy to gear up for it, and it's devastating when it falls through.
He said, "Sometimes, when people are looking for a spouse or waiting for a baby, it takes reaching that point when you say, 'I'm done. I'm not going to keep trying.' That's where we've been. Sometimes when we give up, that's actually when something happens."
I agreed, and added, "And sometimes it doesn't. Sometimes we never do find that spouse, we never are able to get pregnant. Sometimes the answer is still no, and it may be now too."
"You're right. And if that's the case, we stay on how we are now. But we're not fighting or gearing up, waiting around by the phone. We're just living."
Maybe that's the best way to sum it up. We're just living. We still have our struggles. Cora admitted yesterday that she's still embarrassed that she has the only Mommy with a cane and wheelchair. Then again, it all feels more and more commonplace. Henry made me a mother's day card with "all your favorite things, Mom": a cane, a wheelchair, and a chairlift (which looked more like a toilet on a track). As I told a friend a week or two ago, "This used to feel like someone else's life and now it feels like mine--so we must be adjusting." We're just going to live this thing out, one day at a time. And as it turns out, it's not such a bad life.
After hearing from the neurologist that there were no further tests to pursue at the time, I reached out with a few lingering questions. He was quick to respond to me, and added, "I think it makes sense to keep a rheumatologist and a neurologist in the loop as you move forward." He was more than willing to be that neurologist, and asked me to keep him apprised of any new or worsening symptoms, and to reach out to him as needed. It's an offer I've taken him up on a couple of times as I've worked through managing symptoms and work hours, and I'm very grateful for his kindness and willingness to continue to help us along the way. Our time with him didn't bring us any closer to answers, but both he and the rheumatologist I saw have been wonderful to leave the door open for the future, and that gives us an added layer of assurance.
On the Saturday after deciding to take a break, we had a very frank discussion about what it meant for our lives. Without a diagnosis, there was no longer the hope of finding a treatment in the near future. That, in turn, meant no relief from symptoms (and a likely progression of symptoms that could make things worse). After the months of ongoing discussion about our house and the stairs, we finally resolved that we may not be able to stay where we are. We planned to contact a realtor the next day, and even discussed writing letters to homeowners of one-story homes in our area to ask them to consider letting us look at their houses in the event that they were considering moving. In the evening we sat out on the balcony off of our bedroom. We could hear our neighbors out on either side of us. We watched the birds--and eventually the bats--swooping down over our neighborhood. We knew it wasn't time to leave. We had invested too much here, and we were still invested here. It wasn't time to leave our home. That night we prayed, "OK, God. If it's not time to go, then you need to help us make this house work. We don't know how, but please do something that will let us stay in this house."
The next day we got a phone call from my mom. My grandmother knew of a family getting rid of a chair lift, and wondered whether we would be interested. We took some measurements and discussed it, and told them that (depending on the price) we would love to consider it. They called back and said between them and some friends of theirs, it had been paid for us. The chair lift was ours to have for free, if we wanted it. We were blown away. We have two staircases in our house. We had spoken with a company that makes and installs lifts to get a rough cost estimate. It wasn't even within our ability to consider the amount they quoted. Now we had one provided for free. It would allow me to access the basement--with one bathroom and a laundry room, as well as our family room with the TV. I would have one step at the beginning and end of the staircase to manage, but I would no longer have to climb the whole flight of stairs (which is what has exhausted me all along). Maybe eventually we'll find a solution for the upstairs, but this at least limits my trips up and down the stairs and allows me to move freely between the two levels throughout the day. We never expected such a direct, immediate answer to prayer!
Having that aspect of things taken care of meant that we could, without a doubt, stay in our house. I can't describe the settled feeling that gave us, and gave me in particular. I'd become more and more restless, and I thought constantly about how we could make the house work, how we could find another house, how we could still somehow stay close to the neighbors and neighborhood we love so well. When I finally let go of it, God made a way. And I had overwhelming peace about it. I fell in love with our house all over again, and I'm completely content here. It was a contentment that I desperately needed.
During that same week, my parents asked to buy us a wheelchair. I had borrowed a chair for our trip to Niagara Falls, and we had a rental chair for a period of about a month. But now--in the absence of a treatment plan--we would have a chair to keep. I was able to research and choose the chair for myself, and I found one that not only met all of our needs, but came in red. It arrived last weekend and we tried it out for the first time yesterday. We took the kids to the zoo, and this time there were no limits on how many exhibits we could see. I rode for the whole time (I'm learning to save my energy for the things I want to do later), and we had a great trip. The chair was comfortable, easy to push, and worked beautifully. What's more, I felt comfortable in it. I didn't feel conspicuous or self-conscious. It gave me freedom to do what my family was doing without paying a heavy price afterward. It gave me freedom, period. I have a feeling it will be a gift we use often moving forward.
Someone asked this week how we've been feeling about things. Surprisingly, I don't think we'd taken much time to think about it, to reflect on it. We've been taking things a day at a time, making the choices and decisions necessary for that day, taking the symptoms as they come. I've had some really great days--last Sunday and Monday I almost would have said I felt normal--and some incredibly rough days. But as I thought back over the past two weeks when I was asked about them, the words that came to mind were peace and contentment. Micah and I talked about it this morning, and he equated it to the times in our lives when we were waiting and feeling desperate for something. The times before we knew each other, when we wanted more than anything to find someone. The times when we were trying to start a family, when we lost Annie. We wanted those things so desperately that we were restless in our waiting. It took emotional energy to hope that it would work out, to gear up for what we anticipated would happen, and it was crushing when things fell through. Our past several months have been a similar emotional rollercoaster: every doctor's appointment, test, potential diagnosis brings with it the expectation of something. It takes incredible emotional energy to gear up for it, and it's devastating when it falls through.
He said, "Sometimes, when people are looking for a spouse or waiting for a baby, it takes reaching that point when you say, 'I'm done. I'm not going to keep trying.' That's where we've been. Sometimes when we give up, that's actually when something happens."
I agreed, and added, "And sometimes it doesn't. Sometimes we never do find that spouse, we never are able to get pregnant. Sometimes the answer is still no, and it may be now too."
"You're right. And if that's the case, we stay on how we are now. But we're not fighting or gearing up, waiting around by the phone. We're just living."
Maybe that's the best way to sum it up. We're just living. We still have our struggles. Cora admitted yesterday that she's still embarrassed that she has the only Mommy with a cane and wheelchair. Then again, it all feels more and more commonplace. Henry made me a mother's day card with "all your favorite things, Mom": a cane, a wheelchair, and a chairlift (which looked more like a toilet on a track). As I told a friend a week or two ago, "This used to feel like someone else's life and now it feels like mine--so we must be adjusting." We're just going to live this thing out, one day at a time. And as it turns out, it's not such a bad life.
 |
| We're learning to just rest, of saving energy for the places where I need it most, and of being kind and gentle to myself (and my family). |
 |
| Our first family zoo trip on wheels. No limits--here I come, world! |
