3.23.2018
Starting Over
It’s been a while since I blogged here. I’ve been busy doing other things like getting my book published on Amazon. You can buy it here in Kindle or paperback form. I am planning to start blogging again, but my topics won’t necessarily be related to fertility or parenting. Because of that, I decided that it’s time to retire this blog. It helped me immensely getting through some serious rough patches, but the title is too restrictive. I feel like I have to find a way to justify what I post in case new readers are coming expecting a fertility-related blog. Instead, I’ve started fresh with a new blog: www.myhalfacre.net. There I plan to cover a wide range of topics and write about whatever moves me. I appreciate your reading and your past support, and I hope you’ll join me over there.
9.12.2017
Memo to Me: Depression is Chemical
I was talking with my counselor this week about my breakthrough about Patrick, and she thought I was making great progress and perhaps I was entering a new stage of the grieving process. I told her that I thought if that were true, why wasn't my depression any better? She answered that I had a lot of other things going on contributing to the depression. That answer didn't satisfy me, but we moved on to talking about other things. The next day I was talking with my good friend, and I told her the same thing: If this was such a big breakthrough, why didn't the depression lift? She looked at me the way I look at my child sometimes and said, "Because depression is chemical. We do not think our way out of depression." Of course! I knew this. She knew I knew this, which is why she had that look on her face. I had gotten wrapped up in the false belief that I could think my way out of depression again. I had forgotten all of the things I knew about needing medication and why I was getting help in the first place. Depression is chemical. I felt dumb for having to be retold that simple tenet, but the truth is that the idea that depression is a thought disease is fairly heavy in our society and I bought into it for a long time. It will take a long time to divest myself of all the remnants of that false belief, and this is probably not going to be the last time I have to be gently and firmly reminded. Thank goodness for loving friends who can get me back on the path so I can quit beating myself up and take pride in my accomplishments. I made a huge step in my grief recovery and I wasn't taking credit for it because I thought it should accomplish something it wasn't capable of doing. My depression may not be going anywhere at the moment, but I am making progress every day.
9.05.2017
On September, Depression, and Letting Go
School has started. There's a crispness in the air. Up here the leaves are starting to change. All this means that September has arrived. I used to love fall. But now, as soon as the cool weather starts to come in, my depression begins to settle around me like an unwelcome friend. I can feel it making itself comfortable like a warm blanket resting on my shoulders, except it's anything but. It's an unwanted guest making its annual visit this time of year.
I went on a retreat with a good friend of mine and unplugged from social media for the last week of August and the first part of September. We started out in the middle of nowhere in Northern Michigan and worked on getting our lives back in order and ended up in the middle of Detroit going to the movies, the zoo, and a Tigers game. I thought keeping myself busy with a good friend would keep the dementors at bay. Alas, it was not to be. They came anyway. They showed up like clockwork to tell me that the days were ticking down to the anniversary of Patrick's passing.
Indeed, the last time I was at a Tigers game was 2014, and Phil and I had just visited with the surgeon and I was moving toward palliative care for Patrick. The memories came flooding back. The last time I was at the Detroit zoo, we were there with Mira keeping her entertained while Patrick was in the hospital. And the memories continued to come. But next time! Next time I can say, last time I was here with my friend and we ate junk food and laughed about things and had a wonderful time. Next time I can go to these places and have something else to remember because I was brave enough to go this time. And so I enter each September wondering what I will be doing so that next year I can try to fight off the dementors with new memories. Wondering when the depression will not make itself at home quite as easily as it does now. Sadly, it's not this year, but I hold out hope and wait for next September.
In the meantime, though, I have learned something that might help. This year, Patrick would have been 4. I have seen lots of little boys running around doing lots of adorable things this year. Some of these boys are younger than Patrick and others are around his age. And sometimes I get caught up wondering what Patrick would have been like. What would he have been doing? I know he would have been driving his sister crazy, but would she have been trying to teach him the ABCs like she claims? Would they play together? Chase each other? Would his problems have kept him from developing normally?
As I contemplated these questions, as I have done in previous years, something different happened this year. I remembered his heart--his funky, one-of-a-kind heart--and something my dad said to me. Patrick made it so no one could make him stay longer than he meant to. And that's the raw truth of it. Patrick was never going to be 4. There is no "How would he look all grown up?" because he was never going to grow up. Imagining what he might have been like is useless because that was never meant to be. He was not a healthy kid who had his life snuffed out early. He was a beautiful soul who was just here for a short time.
I've always known there was nothing more I could have done for Patrick. I've never felt as though I let him down or that I should have done more for him. And yet, by allowing myself to let him age in my head, I was doing just that. I was pretending that there was a life he could have and should have had. There wasn't. Patrick didn't miss out. He lived his life to the fullest, learning, laughing, and smiling to the end. By aging him, I've been uselessly beating myself up over something that never was and never would have been. I believed it brought comfort to imagine, but it didn't. It simply brought home the ache that he wasn't there. Instead of focusing on the amazing memories I did have, I was focusing on those things that could never be. That doesn't mean I won't celebrate his birthday, and I'll probably still make the off-handed remark that he would have been able to drive when we reach his 16th birthday. Heck, we even said that about our marriage when it hit 16 and it's not even a person. The point I'm trying to make is that I'm ready to let go of the imaginary life I had for him. It wasn't his. It was mine. And it isn't helping me. So it's time to thank it for the part it played in my grieving process and show it on its way. I'm ready to grow up and face the truth now.
Patrick was almost 11-months-old when he died. That's all he got. That's all he needed. I need to focus on and remember those beautiful times and those beautiful smiles.
6.13.2017
On Work and Identity
Yesterday, I was having a conversation with a good friend of mine from law school who also suffers from chronic illnesses that make it difficult to work. We were talking about the jobs we had done that made us feel alive. Where our passions were. And I realized that we had lost a great deal of our identity when we lost the ability to work. One of the first questions we often ask people when we meet them is, "What do you do?" Why? Curiosity, of course. But also because how we spend our time is often indicative of what we think is important. Some careers take significant time and monetary investment. A person's dedication to such a career shows that they find it worthy of that commitment. It becomes part of their identity. Some jobs are on-call all the time so that it becomes hard to separate job time from free time, again mixing vocation and identity. So what happens in the world when you can't work anymore? You lose that label. You no longer get to claim that part of yourself. Far different from those who retire and get to retain their label, those who lose the ability to work are seen as less than and even worthless. And for some of us, who invested largely in our vocation because it was also where our passion was, it feels like a piece of us has died. Now, I don't subscribe to the idea that a person who does not work is worthless, although I discovered that I have been fairly well-conditioned by society to believe it is true. Cognitively, I know that my disability did not render me valueless--though I'm still working on the emotional aspect. But if I still have value, where does it lay?
I decided that I needed to excavate myself. I thought I would start with some nouns or labels that I thought identified me. Some labels were easy. Wife. Mother. Believer. Writer. Friend. Other labels took more thought. Survivor. Seeker. Competitor. Peacekeeper. Some ideas didn't fit neatly into a single word. Work in Progress. Trying to Find Balance. Moving through Grief. There were labels I was less inclined to admit. Empty. Food Addict. Some that I hoped were temporary. Obese. Chronic Pain Sufferer. And some that were fun to remember. Music Lover. Gamer. But as true as each of these labels are, none of them encompass all of me. They are all simply parts of the whole. Part of the complex introvert who sometimes wants to go out and party. Part of the strong woman who can do anything and doesn't need anyone, but feels alone and lonely without friends and loved ones.
I don't wrap up into a neat tidy package. I don't always make sense. I'm not always internally consistent. I am not a simple algebra or calculus problem where I can input all these labels, solve for x, and come up with one ultimate label. That's not how it works. This realization made me frustrated and angry. I had wasted all this time trying to figure out who I am and had gotten nowhere. But as I sat with my frustration, I realized that what I was searching for wasn't really a label. What I was missing was the passion I had for my work. Back when I felt like I was making a difference. When I loved what I was doing. I want that back. What I need to find is something I can do that holds passion and meaning for me. Like when I was making gift baskets for the Ronald McDonald House in Detroit in memory of Patrick's birthday. Or when I sang in the choir at church. So that's where I am. Figuring out what I can do that will give my life purpose, passion, and meaning until I get back to work, or in case I can't go back to work. I don't know what it is yet. It may end up being a few small things rather than one big thing. But at least I have a goal and a good idea of what I'm looking for. And these days, Yoda can keep his "Do or do not, there is no try." I'm following Trace Adkins: "But all I can do, is all I can do, and I keep on tryin'. And all I can be is all I can be, and I keep on tryin'."
Who am I? Just another person figuring life out one day at a time, grateful for grace and forgiveness. What do I do? These days I'm a professional struggler. But someday soon, I hope to be something more.
Where do I work? Hopefully, wherever I am to make changes for the better.
I decided that I needed to excavate myself. I thought I would start with some nouns or labels that I thought identified me. Some labels were easy. Wife. Mother. Believer. Writer. Friend. Other labels took more thought. Survivor. Seeker. Competitor. Peacekeeper. Some ideas didn't fit neatly into a single word. Work in Progress. Trying to Find Balance. Moving through Grief. There were labels I was less inclined to admit. Empty. Food Addict. Some that I hoped were temporary. Obese. Chronic Pain Sufferer. And some that were fun to remember. Music Lover. Gamer. But as true as each of these labels are, none of them encompass all of me. They are all simply parts of the whole. Part of the complex introvert who sometimes wants to go out and party. Part of the strong woman who can do anything and doesn't need anyone, but feels alone and lonely without friends and loved ones.
I don't wrap up into a neat tidy package. I don't always make sense. I'm not always internally consistent. I am not a simple algebra or calculus problem where I can input all these labels, solve for x, and come up with one ultimate label. That's not how it works. This realization made me frustrated and angry. I had wasted all this time trying to figure out who I am and had gotten nowhere. But as I sat with my frustration, I realized that what I was searching for wasn't really a label. What I was missing was the passion I had for my work. Back when I felt like I was making a difference. When I loved what I was doing. I want that back. What I need to find is something I can do that holds passion and meaning for me. Like when I was making gift baskets for the Ronald McDonald House in Detroit in memory of Patrick's birthday. Or when I sang in the choir at church. So that's where I am. Figuring out what I can do that will give my life purpose, passion, and meaning until I get back to work, or in case I can't go back to work. I don't know what it is yet. It may end up being a few small things rather than one big thing. But at least I have a goal and a good idea of what I'm looking for. And these days, Yoda can keep his "Do or do not, there is no try." I'm following Trace Adkins: "But all I can do, is all I can do, and I keep on tryin'. And all I can be is all I can be, and I keep on tryin'."
Who am I? Just another person figuring life out one day at a time, grateful for grace and forgiveness. What do I do? These days I'm a professional struggler. But someday soon, I hope to be something more.
Where do I work? Hopefully, wherever I am to make changes for the better.
6.03.2017
Of Baby Showers, Patrick, and Love
Today I went to a friend's baby shower. I generally would not subject myself to all things baby when I am in the midst of a baby bug, but this was for a very dear friend. She was one of Patrick's caregivers. And because of that, in addition to things from her registry, I went down into my basement and opened up our box of Patrick's things and selected one of his sleep & play rompers to give to her baby since they are having a boy. I wrapped it separately and marked the card to the baby from Patrick. I told Phil what I was doing, and he agreed 100%. Still, I was completely unprepared for the wave of emotion I would feel when she opened it up and then again at the end of the shower when I told her I hoped it was okay with her what I had done (she assured me it was).
Memories of Patrick are all around. Pictures, books, what have you. We talk about him, too. There are days I think we are doing really well, but there are others when it feels like my wound has just been freshly ripped open and I might as well be back at square one. I had one of these moments walking into the church nursery where I volunteered to watch children during church. Seeing all of the things we donated just brought his absence freshly to mind in a way I had not expected. It hasn't gotten easier. Each week I walk in and all of the memories come flooding back. I wonder what happened to the detachment and certainty and love I had when I was donating the items and putting the nursery together. I have no doubt we did the right thing then, and I am certain I am doing the right thing now. I'm just frustrated that my feelings have taken me on an unexpected journey.
This week marks the anniversary of when Patrick returned to the hospital for his final, months-long hospitalization. I know that it has a lot to do with my mood. I wonder if I will ever go through a year without having huge mood swings when these anniversaries come. I wonder if I will ever stop yearning for a rainbow baby. But one thing I don't have to wonder about is whether Patrick was loved. He was so loved. And he was special. Not just to me, but to so any people. And I am still working on ways to spread his love and light and joy with the world. But I think I managed that in a small way today. And yes it was sad. But it was also so very good. Because there is a new little boy coming into the world who is going to be loved so very much. And he's going to get his very own Patrick snuggles. Snuggles like his momma so freely gave to Patrick. Because snuggles are love. And love keeps going long after someone is gone. And for that, I am so very thankful.
Memories of Patrick are all around. Pictures, books, what have you. We talk about him, too. There are days I think we are doing really well, but there are others when it feels like my wound has just been freshly ripped open and I might as well be back at square one. I had one of these moments walking into the church nursery where I volunteered to watch children during church. Seeing all of the things we donated just brought his absence freshly to mind in a way I had not expected. It hasn't gotten easier. Each week I walk in and all of the memories come flooding back. I wonder what happened to the detachment and certainty and love I had when I was donating the items and putting the nursery together. I have no doubt we did the right thing then, and I am certain I am doing the right thing now. I'm just frustrated that my feelings have taken me on an unexpected journey.
This week marks the anniversary of when Patrick returned to the hospital for his final, months-long hospitalization. I know that it has a lot to do with my mood. I wonder if I will ever go through a year without having huge mood swings when these anniversaries come. I wonder if I will ever stop yearning for a rainbow baby. But one thing I don't have to wonder about is whether Patrick was loved. He was so loved. And he was special. Not just to me, but to so any people. And I am still working on ways to spread his love and light and joy with the world. But I think I managed that in a small way today. And yes it was sad. But it was also so very good. Because there is a new little boy coming into the world who is going to be loved so very much. And he's going to get his very own Patrick snuggles. Snuggles like his momma so freely gave to Patrick. Because snuggles are love. And love keeps going long after someone is gone. And for that, I am so very thankful.
5.26.2017
Weight Evaporation
I mentioned previously that I was on disability for a degenerative disc in my back. The pain was so bad I was on opioid narcotics and learning to live life in a wheelchair. I couldn't have back surgery and I was at the point of resignation because there was nothing to be done. Then I saw a neurosurgeon. He thought that if I lost weight, the pressure on the disc would subside and the pain would recede. With time, I dropped my weight from 295 to 250 and the pain went away. I was out of the wheelchair and doing all of the things I used to do. Unfortunately, I got lazy, and my depression hit back hard, my fibromyalgia got out of control, and I began self-medicating with food. Not surprisingly, my weight went back up. I ignored it until we hit 270 and the back pain returned. It hit a high of 275.6 before I got things back under control. My doctors recommended light exercise would help with the fibro pain, so I decided to take up walking. I've also switched to drinking nothing but water. I try not to eat fast food, but if we do go to a fast food restaurant, I order salad. So far, I'm down 5.3 pounds. My friend and I were talking, and I said I had released 5.3 pounds. I liked to say "released" instead of "lost" because usually you try to find things that are lost, and I don't want to find these pounds again. My friend said that I should use a more active term than released because I was working hard to get rid of them. We threw out some terms and finally came up with one I liked. Evaporated. I had evaporated 5.3 pounds. I liked it because it was more active, but also sounded like a natural process, similar to melting off pounds. It created a nice visual I could use when I was walking, too. So here's to more weight evaporation and getting back to a healthier me. One step at a time.
5.24.2017
The "F" Word
In my last post, I mentioned that I was on disability. I was previously on disability for depression after Patrick died and for a degenerative disc in my back until I lost enough weight to make the pain stop. Recently, my fibromyalgia has gotten out of control. The pain and stiffness began to come more frequently. My good days came and went with the weather. I am exhausted all the time, no matter how much sleep I get, or if I take a nap. But what bothers me most is the brain fog. It's just so frustrating. I forget words. Simple words. Useful words. All kinds of words. All the time. It makes talking and writing much more difficult than it used to be. And for me--the person who uses words for precision and to figure out my thoughts--it is infuriating and disabling. Then there are the crazy things I do, like pour cereal on plates instead of in bowls, or put toothpaste on my flosser. Twice I ended up in my car to run errands without shoes on. But the real kicker happened this weekend. I was at church, and there was a person there. I sat and talked with them, and Phil told me their name. Not once did I recognize this person. Not until much later did Phil mention their spouse, and I suddenly knew who they were and that I had met them several times before, had long conversations with them, and even held their children. Granted it had been in the years before Patrick, but still. I have always been good with faces and voices, even if I am bad with names. It never occurred to me that I would forget a person entirely because of the brain fog. Now, it's possible that it's something other than the brain fog. In fact, my doctor said if the brain fog didn't get better, he was going to send me for a neurology evaluation just to rule out anything else. But, whether it's brain fog or something else, I'm terrified that I may not be able to go back to work. My job requires precision and being detail-oriented with words and grammar. How can I do that if words fail me? How can I do that if I have to triple-check basic emails to make sure I have correctly typed things that used to be so simple? I'm seeing a rheumatology-certified NP next week who will hopefully help me get my fibro under control, but fibro meds usually work on the sleep and pain and stiffness. I don't know any that help the brain fog. Now maybe fixing those other things will help the fog. I don't know. What I do know is that, for now, I feel trapped in a body outside of my control. So whether the "F" word if fibro, or frustrating, or f*^%, they are all in my vocabulary these days.
5.23.2017
The Baby Bug
Recently I have found myself surrounded by lots of new babies and expecting mommas. And it's been fun to get to snuggle all these new babies and smell their little heads. But somehow, even without ovaries, I've been bitten by the baby bug. Don't ask me how. I thought post-menopausal women were supposed to be immune. Apparently not. Live and learn. I've spent these last few days desperately missing Patrick, and I know that has a lot to do with why I'm feeling this need for a baby. I also know that if I sit down and think about things logically, it doesn't really make sense to have a baby. I'm currently off work on disability, and Phil is at his limit on caregiving right now. Mira is finally reaching the stage where she is almost helpful. To suddenly add 18 years to our day-to-day parenting at this point doesn't sound terribly exciting.
I mean, even assuming I could get Phil and me on the same page to agree to another child, then what? How would we acquire said child? Our house is never clean enough to pass a foster care or adoption review. My baby factory is gone. That leaves using a gestational carrier with an egg donor. Not an inexpensive scenario. But hey, I'm just throwing things out there. Let's assume we made a GoFundMe page and people were nice and funded this endeavor of ours. Then what? We'd have the stress of getting the carrier pregnant and going through all the IVF stuff. Assuming we were successful and got a child, then there's the up late at night and all of that good stressful newborn stuff.
Still, on the flip side, there's getting to see them grow and learn and do all the cute silly things they do that make all of it worth it. The hugs. The "I love yous." A sibling for Mira. And all of these are good and wonderful things. And maybe they could override my concerns about being a good caregiver. And maybe we could do it. But part of me knows this bug bite is just a partial urge to replace what I lost. Not that I could ever replace Patrick, but I lost my baby. I lost the opportunity to see him grow up. I want that. But even more, I want Mira to have a sibling. I want that for her, and I know she wants that very much. And if I can give that to her, I mean if I have the capacity to even try, isn't it worth it? Wouldn't you do anything for your kids?
I don't know the answer. There isn't a good answer. There sure as heck isn't a right answer. There's just me and Phil. Muddling through. Together. Talking. About where we are. What we want. How we feel. Respecting each other. Just getting by. One day at a time. Maybe we'll do it. Maybe we won't. I haven't written this to change Phil's mind. Rather, my friend reminded me that I use writing to pull my thoughts together. It's more about figuring out where I am--the answer to which is all over the place. But at least I have a better handle on the underlying currents that seems to be feeding the bug. And that's a good start.
I mean, even assuming I could get Phil and me on the same page to agree to another child, then what? How would we acquire said child? Our house is never clean enough to pass a foster care or adoption review. My baby factory is gone. That leaves using a gestational carrier with an egg donor. Not an inexpensive scenario. But hey, I'm just throwing things out there. Let's assume we made a GoFundMe page and people were nice and funded this endeavor of ours. Then what? We'd have the stress of getting the carrier pregnant and going through all the IVF stuff. Assuming we were successful and got a child, then there's the up late at night and all of that good stressful newborn stuff.
Still, on the flip side, there's getting to see them grow and learn and do all the cute silly things they do that make all of it worth it. The hugs. The "I love yous." A sibling for Mira. And all of these are good and wonderful things. And maybe they could override my concerns about being a good caregiver. And maybe we could do it. But part of me knows this bug bite is just a partial urge to replace what I lost. Not that I could ever replace Patrick, but I lost my baby. I lost the opportunity to see him grow up. I want that. But even more, I want Mira to have a sibling. I want that for her, and I know she wants that very much. And if I can give that to her, I mean if I have the capacity to even try, isn't it worth it? Wouldn't you do anything for your kids?
I don't know the answer. There isn't a good answer. There sure as heck isn't a right answer. There's just me and Phil. Muddling through. Together. Talking. About where we are. What we want. How we feel. Respecting each other. Just getting by. One day at a time. Maybe we'll do it. Maybe we won't. I haven't written this to change Phil's mind. Rather, my friend reminded me that I use writing to pull my thoughts together. It's more about figuring out where I am--the answer to which is all over the place. But at least I have a better handle on the underlying currents that seems to be feeding the bug. And that's a good start.
1.22.2017
What Kids Understand
Two nights ago, we held a non-partisan candlelight peace vigil at church the evening of the presidential inauguration as a way to help calm some of the anxieties and anger people were feeling--whether about the upcoming administration or people's refusal to accept it. In addition to readings on peace and songs about peace, we had a section of the service where we wrote things down on dissolving paper that we wanted to let go of to bring ourselves peace and placed them in a bowl of water for them to dissolve away. Then there were blue cards we could write things down on we wanted to carry with us to have more of to bring ourselves peace. Finally, there were candles we could light. I wasn't sure how much Mira understood, but we brought her because we both wanted to attend. When it came time for the participatory parts, she hopped right up and went straight to the table. I watched as she wrote down on the piece of dissolving paper, "Stop being scared of bad dreams." Why yes. That is exactly something to get rid of to have more peace in one's life. I was duly impressed. She promptly placed that in the bowl of water and went back over to the table and grabbed a blue card. She showed it to me when she was done. It read, simply, "LOVE." Again, I was amazed at her ability to cut to the heart of things. I, too, would want more love if I were to be at peace. Then we lit our tealights and sat down. At the end of the service, she ran to the table and pronounced that she had more things she needed to write down, and proceeded to include, "Stop thinking bad thoughts," and "Stop not doing exercise" to the things she dissolved. I know she's already lived a lot of life, but I forget how much kids really understand even at her age. She may not always articulate herself in the way an adult would, but I need to remember to ask her more questions and listen more to what she has to say. There's a lot more going on in there than I give her credit for sometimes, and I would do well to remember that more often.
7.25.2016
Pondering an Unexpected Coincidence
I just returned from Mended Little Hearts's third annual CHD Symposium and am, overall, energized and excited about the things that are coming. I saw friends of old, met lots of new people, helped shape conversations about the needs and desires of the larger body, and made suggestions that people indicated were helpful and spurred potential chance and work in various areas. I was feeling like a catalyst for good and for change and was so excited that I felt well enough to go and that I had two wonderful women to carpool with so I was able to make the trip. We are making plans to expand our local group with me taking on a larger role and potentially even a coordinator position depending on how the current leadership votes.
The odd part came when I recognized one of the speakers as someone I had attended school with, who was part of a group of people that had managed to make middle school and high school very difficult for me. The speaker spoke about a topic that I wanted to ask further questions about, but I couldn't do it. In that moment, I again felt like a teenager and all I could do was hope that the person did not see me in that room of 122+ attendees and speakers and, if they did, they did not recognize me. I considered emailing the person, but I became concerned that even emailing might reveal my identity. I thought long and hard about what to do, but it came down to this. Medical care is all about trust. You must trust the providers, procedures, medications, devices, etc. every aspect of care when it comes medicine. This is doubly true when it comes to your children. And I simply cannot trust this person. I cannot trust that they will not remember me; that they would not do something to spite me. I realize that this says more about me than it does about them, but it doesn't change how I feel.
At the same time, they may very well be a different person now than they were in high school, so there is no reason to destroy the trust others have placed in this person over actions they made when they were a teenager. And although I do not trust this person, I remember that they are smart, and I can trust that. So, I will not cut off an avenue of treatment for Mira simply because I had a bad experience with someone in high school. So I will not reveal who they are. And I will not reveal this person's actions to Mira. If Mira should come across this person in her care as an adult and feel she can trust them, that will be her decision to make. I will not make it for her. But for the next 13 years, while it is my decision to make, I will look for an alternative way for her to benefit from the topic without having to directly contact the speaker, whether by using Mira's own care providers as go-betweens, or finding another solution.
But in the meantime, this unexpected coincidence has left me pondering. If there are no coincidences, why did this happen? Why did this "safe space," this place where I have found meaning and purpose, become sullied by the taint of old high school memories? Maybe it's something as simple as an opportunity to let go of some of this emotional stuff that's still hanging on. Honestly, though, I'd have rather it just stayed buried.
The odd part came when I recognized one of the speakers as someone I had attended school with, who was part of a group of people that had managed to make middle school and high school very difficult for me. The speaker spoke about a topic that I wanted to ask further questions about, but I couldn't do it. In that moment, I again felt like a teenager and all I could do was hope that the person did not see me in that room of 122+ attendees and speakers and, if they did, they did not recognize me. I considered emailing the person, but I became concerned that even emailing might reveal my identity. I thought long and hard about what to do, but it came down to this. Medical care is all about trust. You must trust the providers, procedures, medications, devices, etc. every aspect of care when it comes medicine. This is doubly true when it comes to your children. And I simply cannot trust this person. I cannot trust that they will not remember me; that they would not do something to spite me. I realize that this says more about me than it does about them, but it doesn't change how I feel.
At the same time, they may very well be a different person now than they were in high school, so there is no reason to destroy the trust others have placed in this person over actions they made when they were a teenager. And although I do not trust this person, I remember that they are smart, and I can trust that. So, I will not cut off an avenue of treatment for Mira simply because I had a bad experience with someone in high school. So I will not reveal who they are. And I will not reveal this person's actions to Mira. If Mira should come across this person in her care as an adult and feel she can trust them, that will be her decision to make. I will not make it for her. But for the next 13 years, while it is my decision to make, I will look for an alternative way for her to benefit from the topic without having to directly contact the speaker, whether by using Mira's own care providers as go-betweens, or finding another solution.
But in the meantime, this unexpected coincidence has left me pondering. If there are no coincidences, why did this happen? Why did this "safe space," this place where I have found meaning and purpose, become sullied by the taint of old high school memories? Maybe it's something as simple as an opportunity to let go of some of this emotional stuff that's still hanging on. Honestly, though, I'd have rather it just stayed buried.
5.03.2016
Value
Something I haven't been sharing on here recently is my health struggles. Beyond the depression and anxiety, last October or so I began to have back problems. I have had different types of back problems throughout my life, but this time, they have been much worse. Between x-rays and MRIs, doctors have found any number of things that could be causing the pain, but so far nothing has helped. On top of that, my doctors think I may have fibromyalgia, which would explain the fatigue, body pain, brain fog, word recall and memory issues.
Because of these myriad physical issues, I have been out of work from my primary job since mid-March. Unfortunately, I am nearly at the end of my employer's ability to wait and hold my job for me while I get better. I have four appointments in the next week to try to come up with some new avenues to consider, but I've got a deadline to be back at work in order to keep my job, and I don't think I'm going to make it. I am terrified. Having a job to return to has been both a safety net and one of my motivations to get better. I love my job. I want to go back. Work gave me a sense of purpose. I was helping people. I was good at it. It helped push me forward through my therapy and depression last year, knowing my work family was waiting to warmly welcome me home. Now, I have to face the very real potential of the loss of this motivation and safety net.
This week, I was forced to admit that my mobility is much more limited than I wanted to believe. My doctor wrote me a prescription for a wheelchair, which arrived yesterday, and I received my handicapped parking permit today. My pain medications render me unfit to drive. If I know I have to drive, I don't take them, but then the pain renders me useless for much of anything. Now that I have the wheelchair, doing the occasional errand or getting to doctor's appointments is easier because I don't have to walk or stand, but lifting that bugger into and out of the car (sans pain meds) means that, at best, I can only do two errands a day. I have been unable to ferry Mira around to school and gymnastics, do laundry, make beds, load and unload the dishwasher, clean the house, etc.
Phil has really stepped up, and he is positively amazing, but he is burned out and exhausted. He has to do not only most of the work a single parent would, but take care of me on top of that. He has earned all the "good hubby" and "good daddy" points that exist and then some. Lord knows he has lived up to the "for worse" part of our marriage vows these days. But I hate watching the light die in his eyes. I hate seeing how tired he is from trying to do it all. And I hate that I feel powerless to help. Instead, I feel like a giant time and energy suck. Spending my time trying to mentally overcome physical pain just results in physical, mental, and spiritual exhaustion.
Because I feel as though I am of no use to my family or myself, I have begun trying to figure out what makes me valuable. When I was growing up, I struggled to make friends and often felt inadequate or worthless, but I knew I was smart. I knew I was good at school and nothing those people ever said about me could take that away. I measured my value with every "A," every "summa cum laude," every advanced degree I could achieve. I had value, and I knew it. I could see it. It was tangible and measurable. Now, I am very likely about to lose my favorite job in the world and may no longer have the ability to do a vocation for which I am still paying off student loans. As I stare at the approaching precipice of job loss, I am trying to determine what else gives me value.
Sure, I can provide love and hugs to my family, and with my wheelchair, I can now contribute to more chores around the house. But does what I have to offer offset what it takes for them to care for me? Sure, Mira loves me, and I can give her only the things a mom can, but is she going to resent me because I can't go out and play, or run around, or do all of the things I used to do with her? I set a goal to complete half-marathons in honor of Patrick. Ultimately, with enough training and weight loss, I may be able to do them in a wheelchair, but I feel like a failure for having been unable to complete this small gesture to honor his memory.
So, what makes me valuable? The easy answer is I am a child of God; that God saw fit to create me gives me value. That helps me spiritually, to some degree. It reminds me that I have a purpose, and I am here for something, but it still doesn't tell me why I matter. Why should Phil stay with me? Yes, he made a promise, but people do that all the time. Now that I am no longer an equal partner and participant, why should he stay? All I do is make his life exponentially harder. He reassures me that he's in it for the long haul, and I try to believe him. But, unless I can figure out a way to feel valuable without needing his reassurance, I'm going to end up sucking him dry, and it will be a self-fulfilling prophecy.
I think one of the reasons it is so difficult to figure out why/how I am valuable is that I have always used the measuring tools of the "powers and principalities." Can I work? How much do I earn? Am I attractive? Am I capable? Am I able/fit? These are not the reasons I want to value people, and now that I have no value under these standards, they are certainly not how I want my worth evaluated. So, here's the list of characteristics that I have that I think give me value.
1) I'm strong. I've been through a lot of stuff and I am still going. I haven't given up.
2) I'm empathetic and a good listener. I know lots of people who either are going through or have gone through rough times. I provide support by helping them feel heard and, when asked, helping them problem-solve or come up with a plan to overcome issues.
3) I'm funny. This one took me a long time to figure out, mostly because my brother was SO funny, I couldn't see my own skills until I was out and about on my own. I can make people smile. I can usually get Mira to come out of a frump and turn things around to "find the fun" as Joy says in Inside Out.
4) I'm a great planner. Even with my foggy, forgetful memory, I have managed to use alarms on my phone, post-it notes, and any number of other coping tools to keep myself on track even when basic word recall fails me. Mostly.
5) I try. The other day, it was clear that Phil was done. He was beyond done (still is, I imagine, but this was a pretty low level). So, the next morning, I got up and got Mira ready for school. It took every ounce of energy I had and left my body weak and my pain level around an 8. But, I knew that I would have the rest of the day to try to recuperate, and it allowed Phil to sleep in and get a little bit of rest before starting his day. It's not a lot, but I am working hard to show my appreciation and make sure Phil feels valued for everything he's doing.
This is not a complete list--I'm hoping I can still find more value in my existence. And, if you have additional thoughts (whether for me specifically or for people generally), please share. But, it's a start. It's enough to keep me going and feel like I have earned my place in the world for another day. I am still very angry and frustrated that all of this is happening and that I have zero control and absolutely no idea where all of this is going. But I am doing my very best to use it as an opportunity to learn. Because I'm smart. Ooooh. Look at that, I get to put that one back on the list. :)
Because of these myriad physical issues, I have been out of work from my primary job since mid-March. Unfortunately, I am nearly at the end of my employer's ability to wait and hold my job for me while I get better. I have four appointments in the next week to try to come up with some new avenues to consider, but I've got a deadline to be back at work in order to keep my job, and I don't think I'm going to make it. I am terrified. Having a job to return to has been both a safety net and one of my motivations to get better. I love my job. I want to go back. Work gave me a sense of purpose. I was helping people. I was good at it. It helped push me forward through my therapy and depression last year, knowing my work family was waiting to warmly welcome me home. Now, I have to face the very real potential of the loss of this motivation and safety net.
This week, I was forced to admit that my mobility is much more limited than I wanted to believe. My doctor wrote me a prescription for a wheelchair, which arrived yesterday, and I received my handicapped parking permit today. My pain medications render me unfit to drive. If I know I have to drive, I don't take them, but then the pain renders me useless for much of anything. Now that I have the wheelchair, doing the occasional errand or getting to doctor's appointments is easier because I don't have to walk or stand, but lifting that bugger into and out of the car (sans pain meds) means that, at best, I can only do two errands a day. I have been unable to ferry Mira around to school and gymnastics, do laundry, make beds, load and unload the dishwasher, clean the house, etc.
Phil has really stepped up, and he is positively amazing, but he is burned out and exhausted. He has to do not only most of the work a single parent would, but take care of me on top of that. He has earned all the "good hubby" and "good daddy" points that exist and then some. Lord knows he has lived up to the "for worse" part of our marriage vows these days. But I hate watching the light die in his eyes. I hate seeing how tired he is from trying to do it all. And I hate that I feel powerless to help. Instead, I feel like a giant time and energy suck. Spending my time trying to mentally overcome physical pain just results in physical, mental, and spiritual exhaustion.
Because I feel as though I am of no use to my family or myself, I have begun trying to figure out what makes me valuable. When I was growing up, I struggled to make friends and often felt inadequate or worthless, but I knew I was smart. I knew I was good at school and nothing those people ever said about me could take that away. I measured my value with every "A," every "summa cum laude," every advanced degree I could achieve. I had value, and I knew it. I could see it. It was tangible and measurable. Now, I am very likely about to lose my favorite job in the world and may no longer have the ability to do a vocation for which I am still paying off student loans. As I stare at the approaching precipice of job loss, I am trying to determine what else gives me value.
Sure, I can provide love and hugs to my family, and with my wheelchair, I can now contribute to more chores around the house. But does what I have to offer offset what it takes for them to care for me? Sure, Mira loves me, and I can give her only the things a mom can, but is she going to resent me because I can't go out and play, or run around, or do all of the things I used to do with her? I set a goal to complete half-marathons in honor of Patrick. Ultimately, with enough training and weight loss, I may be able to do them in a wheelchair, but I feel like a failure for having been unable to complete this small gesture to honor his memory.
So, what makes me valuable? The easy answer is I am a child of God; that God saw fit to create me gives me value. That helps me spiritually, to some degree. It reminds me that I have a purpose, and I am here for something, but it still doesn't tell me why I matter. Why should Phil stay with me? Yes, he made a promise, but people do that all the time. Now that I am no longer an equal partner and participant, why should he stay? All I do is make his life exponentially harder. He reassures me that he's in it for the long haul, and I try to believe him. But, unless I can figure out a way to feel valuable without needing his reassurance, I'm going to end up sucking him dry, and it will be a self-fulfilling prophecy.
I think one of the reasons it is so difficult to figure out why/how I am valuable is that I have always used the measuring tools of the "powers and principalities." Can I work? How much do I earn? Am I attractive? Am I capable? Am I able/fit? These are not the reasons I want to value people, and now that I have no value under these standards, they are certainly not how I want my worth evaluated. So, here's the list of characteristics that I have that I think give me value.
1) I'm strong. I've been through a lot of stuff and I am still going. I haven't given up.
2) I'm empathetic and a good listener. I know lots of people who either are going through or have gone through rough times. I provide support by helping them feel heard and, when asked, helping them problem-solve or come up with a plan to overcome issues.
3) I'm funny. This one took me a long time to figure out, mostly because my brother was SO funny, I couldn't see my own skills until I was out and about on my own. I can make people smile. I can usually get Mira to come out of a frump and turn things around to "find the fun" as Joy says in Inside Out.
4) I'm a great planner. Even with my foggy, forgetful memory, I have managed to use alarms on my phone, post-it notes, and any number of other coping tools to keep myself on track even when basic word recall fails me. Mostly.
5) I try. The other day, it was clear that Phil was done. He was beyond done (still is, I imagine, but this was a pretty low level). So, the next morning, I got up and got Mira ready for school. It took every ounce of energy I had and left my body weak and my pain level around an 8. But, I knew that I would have the rest of the day to try to recuperate, and it allowed Phil to sleep in and get a little bit of rest before starting his day. It's not a lot, but I am working hard to show my appreciation and make sure Phil feels valued for everything he's doing.
This is not a complete list--I'm hoping I can still find more value in my existence. And, if you have additional thoughts (whether for me specifically or for people generally), please share. But, it's a start. It's enough to keep me going and feel like I have earned my place in the world for another day. I am still very angry and frustrated that all of this is happening and that I have zero control and absolutely no idea where all of this is going. But I am doing my very best to use it as an opportunity to learn. Because I'm smart. Ooooh. Look at that, I get to put that one back on the list. :)
4.06.2016
A New Low
Today was our annual trek to Detroit to get Mira's semi-annual echo and follow up with her pulmonary hypertension specialist. For once, I wasn't feeling nervous and waiting for the other shoe to drop. On the way there, I was sure it would be a regular visit, and we would hear the same thing--everything is stable. No change. When we got there, they wanted her to have an EKG in addition to her echo. No biggy, She's had that before. After the wires were in place, the tech printed the page. She looked at it strangely and printed another one. Then she did it again. I was a little concerned at that point, but not too much. They took her to the echo room and then said that they wanted Mira to do a 6-minute walk test after the echo. Something new, but not wholly unexpected. My memory told me it thought we had talked about this last year.
The echo went well, and Mira did amazing sitting on the bed by herself, not needing to hold anyone's hand. The echo tech left and was soon replaced by one of the cardiology big wigs, Dr. H., who had helped care for Patrick. He introduced himself (we're guessing he didn't remember us, which isn't terribly surprising), he took a few pictures, and then left again. By this time, I was starting to get concerned. We were placed in a room and waited for her regular doc. When he arrived, the news was actually good. Better than good.
The echo issue was really a non-issue. They noticed that she has a right aortic arch instead of a left aortic arch. We're pretty sure we already knew that from when Mira had her CT scan with contrast at 6 months. But, even if this is new information, it just means Mira is more rare--only .01% of the population has it. It doesn't really cause any problems, so it was just a notation for the record. But, the good news--the best news, really--is that Mira's pressures didn't just remain stable. They decreased!!! Mira's arterial pressures had been running in the 50% range (for normal healthy people, it should be around 20%) since her surgery at age 1. Today, Mira's pressures were running in the 40-45% range. Although not a huge change, it is downward movement, and after four years of no movement, I wasn't sure it would ever go down, so this was amazing news!
She passed her six-minute walking test, and we go back to her local cardiologist in six months. The takeaway--just keep doing what we're doing. Finally some good news. I SOOO needed this. Thank goodness that Mira's pressures have reach a new low!
The echo went well, and Mira did amazing sitting on the bed by herself, not needing to hold anyone's hand. The echo tech left and was soon replaced by one of the cardiology big wigs, Dr. H., who had helped care for Patrick. He introduced himself (we're guessing he didn't remember us, which isn't terribly surprising), he took a few pictures, and then left again. By this time, I was starting to get concerned. We were placed in a room and waited for her regular doc. When he arrived, the news was actually good. Better than good.
The echo issue was really a non-issue. They noticed that she has a right aortic arch instead of a left aortic arch. We're pretty sure we already knew that from when Mira had her CT scan with contrast at 6 months. But, even if this is new information, it just means Mira is more rare--only .01% of the population has it. It doesn't really cause any problems, so it was just a notation for the record. But, the good news--the best news, really--is that Mira's pressures didn't just remain stable. They decreased!!! Mira's arterial pressures had been running in the 50% range (for normal healthy people, it should be around 20%) since her surgery at age 1. Today, Mira's pressures were running in the 40-45% range. Although not a huge change, it is downward movement, and after four years of no movement, I wasn't sure it would ever go down, so this was amazing news!
She passed her six-minute walking test, and we go back to her local cardiologist in six months. The takeaway--just keep doing what we're doing. Finally some good news. I SOOO needed this. Thank goodness that Mira's pressures have reach a new low!
2.21.2016
Time, Forgiveness, and Holding On
Facebook was showing me memories from today in years past and, as often they do, this one included an adorable picture of Patrick at the doctor's office.
Looking at the date, I calculated that he would have been 28 months old in just over a week. 28 months old. And I began to wonder, what would he have been doing?
When Mira was 28 months old, I was newly pregnant with Patrick, and she was in the hospital getting her tonsils out. Would he have needed that? Would he be walking and laughing and playing with his sister, or would he still be struggling to sit up due to something we thought looked like a twist in his spine that never got fully evaluated because of everything else that happened? Would he have had a full head of bright, curly red hair like his daddy, or would it have darkened to brown like his sister's? How many more hospital visits would we have had? How many more snuggles, smiles, and family hugs? How is it that these memories feel like both forever ago and only yesterday, but the actual time of two years seems wrong?
My life is so different. Different both from what it was and what I had imagined it would be. Every day feels like a new hurdle to climb, but then again, so did every day we were dealing with two medically needy children. If Patrick were still here, life would not be easy. We would still be stressed. We would still be struggling to get by. That doesn't change that I still wish he were here. It also doesn't change that when he was here, I often wondered if life would be easier if he were gone. The answer, of course, was no. Not really. Some things got easier, but much of life got harder.
The truth is, no matter what you are struggling with, life will not be easier if it is gone. It will just be different. A new struggle will come. New stressors will arrive. You will wonder if you did the right thing. You will second-guess every choice you've made. It's human nature. What I am learning--I think--I hope--and what I am trying to do, is forgive myself. Life is hard enough without emotionally beating myself over the head. And, what the heck. Maybe if I write it down, I will actually believe it. It certainly can't hurt.
I forgive myself
For assuming that it wouldn't happen to us.
For thinking I would be able to handle whatever came along.
For being angry that I didn't get what I wanted.
For wishing things were other than the way they were.
For thinking thoughts that should never be spoken.
For thinking life could or would be better, easier.
For forgetting to take care of myself.
For forgetting to take care of my marriage.
For forgetting to take care of my daughter.
For forgetting that we are not the only ones grieving.
For feeling too much, not enough, or nothing at all.
For forgetting that grief is different for everyone.
For being angry that life goes on. Without him. Without me.
For wanting to leave.
For wanting to give up.
For wanting to die.
For wanting everything to have meaning and purpose.
For looking outward instead of inward for solutions.
For forgetting to ask for help, both physical and spiritual.
For being weak.
For not being true to myself.
For being me.
For being human.
Because I cannot ask others to do what I cannot ask of myself.
Hold on. Tomorrow will come.
Hold on. There is more love, joy, and laughter yet to experience.
Hold on. There are memories to remember.
Hold on. There are sorrows others need to share.
Hold on. The sun will rise again.
Hold on. The Son will rise again.
Looking at the date, I calculated that he would have been 28 months old in just over a week. 28 months old. And I began to wonder, what would he have been doing?
When Mira was 28 months old, I was newly pregnant with Patrick, and she was in the hospital getting her tonsils out. Would he have needed that? Would he be walking and laughing and playing with his sister, or would he still be struggling to sit up due to something we thought looked like a twist in his spine that never got fully evaluated because of everything else that happened? Would he have had a full head of bright, curly red hair like his daddy, or would it have darkened to brown like his sister's? How many more hospital visits would we have had? How many more snuggles, smiles, and family hugs? How is it that these memories feel like both forever ago and only yesterday, but the actual time of two years seems wrong?
My life is so different. Different both from what it was and what I had imagined it would be. Every day feels like a new hurdle to climb, but then again, so did every day we were dealing with two medically needy children. If Patrick were still here, life would not be easy. We would still be stressed. We would still be struggling to get by. That doesn't change that I still wish he were here. It also doesn't change that when he was here, I often wondered if life would be easier if he were gone. The answer, of course, was no. Not really. Some things got easier, but much of life got harder.
The truth is, no matter what you are struggling with, life will not be easier if it is gone. It will just be different. A new struggle will come. New stressors will arrive. You will wonder if you did the right thing. You will second-guess every choice you've made. It's human nature. What I am learning--I think--I hope--and what I am trying to do, is forgive myself. Life is hard enough without emotionally beating myself over the head. And, what the heck. Maybe if I write it down, I will actually believe it. It certainly can't hurt.
I forgive myself
For assuming that it wouldn't happen to us.
For thinking I would be able to handle whatever came along.
For being angry that I didn't get what I wanted.
For wishing things were other than the way they were.
For thinking thoughts that should never be spoken.
For thinking life could or would be better, easier.
For forgetting to take care of myself.
For forgetting to take care of my marriage.
For forgetting to take care of my daughter.
For forgetting that we are not the only ones grieving.
For feeling too much, not enough, or nothing at all.
For forgetting that grief is different for everyone.
For being angry that life goes on. Without him. Without me.
For wanting to leave.
For wanting to give up.
For wanting to die.
For wanting everything to have meaning and purpose.
For looking outward instead of inward for solutions.
For forgetting to ask for help, both physical and spiritual.
For being weak.
For not being true to myself.
For being me.
For being human.
Because I cannot ask others to do what I cannot ask of myself.
Hold on. Tomorrow will come.
Hold on. There is more love, joy, and laughter yet to experience.
Hold on. There are memories to remember.
Hold on. There are sorrows others need to share.
Hold on. The sun will rise again.
Hold on. The Son will rise again.
1.18.2016
2016 Word of the Year
I have an orchid that a friend at work gave me when I first returned to work after Patrick died. It lived at work for a while and then had a few different locations in our old house (oh yeah--we moved last year, but that's for a different blog post), but it either got not enough light or the kitties attacked it, and then we moved it to the new house. That I haven't killed it yet is amazing in and of itself, but whether as inspiration or a good omen, it decided to open it's first flower on the 31st.
See, as is my tradition, I spent part of December 31 figuring out my word for 2016. My brother-in-law suggested "better," and given how 2016 started off, that might have been a good choice. Instead, however, I was drawn to "bloom," as in, bloom where you are planted. The orchid's decision to flower that day is probably what sealed the deal, but part of why I chose it is because I want life to be about more than just making the best of a bad situation. I want it to be about finding a way to shine and show off my best self no matter what situation I'm in.
Having chosen my word, I have spent the past few weeks trying to figure out ways to move forward on projects and begin to "bloom" myself. I forwarded my manuscript to an editor to move forward on getting my book published. I started selling Jamberry nail wraps on the side to earn money for said editor as well as take a step outside my comfort zone and talk to people. As an introvert who prefers writing to talking, my first home party was terrifying, but it was filled with friends, which was a big help.
And sure enough, as I have moved forward, my orchid has taken off as well.
Seven blooms with roughly 10 more buds left to open!! I try to look at my orchid each morning, but particularly on rough mornings, as a reminder that I can do this. I can show my best self and let the world see the fruits of my internal labor.
May this year give you the opportunity to find your best self and let others see what is most beautiful in you.
#Bloom2016
1.17.2016
Owning Words
Marlo Thomas has written two books called The Right Words at the Right Time, which are compilations of essays by famous people about things others told to them that stuck with and really helped them. In my own life, I have kept waiting for something like this. Something to hep me get through all of this stuff the last few years. And in the midst of my grief and trying to return to normalcy, people have been generous with their words and compliments.
Phil calls me awesome all the time. We even have a saying in our house: awesome looks like tired. So, if we are looking pretty run down, it must be because we are being awesome. But the truth is, I don't feel awesome.
The other morning, as I fought through anxiety, hyperventilating, and the feeling of a heart attack, I spent my whole drive to work saying, "I must go to work. So not drive into the ditch. I must make it to work. Do not drive into the ditch." Later in the day, my mom called me and I was telling her about my morning and she said, "I did call you at work didn't I?" My mind exploded a little as I realized what I had accomplished. She called me amazing, and I probably was, but I didn't feel amazing.
I have been called brave and inspiring. I have been told I'm strong, tough, spectacular, incredible, marvelous, and a multitude of other beautiful, well-intentioned compliments from a wide variety of people. And I knew what they were trying to tell me. They were acknowledging all I have overcome. And I am grateful. I needed each and every one of those compliments. Unfortunately, I couldn't own any of them. None of them felt right on me.
Until a few days ago. A friend was talking to me and he told me: There is no question you are resilient. The moment he said it, something clicked, the lights went on, and the heavens opened. Like a key that finally opened the lock, at last I had a word that represented overcoming my struggles that I could finally wear comfortably and proudly. Yes! I am resilient.
It was a word that spoke to my own actions and abilities. I did this. I worked for it. It wasn't a big boastful word, but it had substance and authority. Like finally finding a pair a jeans you want to wear everyday and that also make your butt look good, I was so excited I just wanted to take the word out and show it to everyone.
Look at me! I'm resilient! I'm still standing! I survived!
So, if you're like me, and struggle to receive or own a compliment, don't give up. There is a word out there for you that will feel like a second skin. Keep looking for it. And in the meantime, know that everyone who pays you a compliment you aren't ready to own just wants you to feel as special as they already know you are. You are loved.
9.27.2015
Grief and Letting Go
Here is the text of the sermon I preached today--the anniversary of Patrick's passing.
A little over six years ago, I stood here and preached my first sermon while Phil was on sabbatical. It was 2009, and we were still waiting for a child. Still stuck in the darkness of infertility; not knowing if we would ever be parents. It’s been a full and unfathomable six years, filled with more doctors and shots and surgeries than I ever imagined. We had Mira and Patrick and life was complicated and crazy and tiring, but beautiful. But, as most of you know, one year ago today, we lost Patrick to complications caused by his congenital heart defect. Learning to navigate feelings of grief and anger while simultaneously working to enjoy and celebrate Mira’s life has been difficult. We have worked hard to find a new normal, knowing that it will only be normal for a while—until another change occurs.
Over the past year, I tried, unsuccessfully, to ignore my grief and shove it away in the name of functionality. When it refused to be shut out any longer, I struggled with depression, anxiety, and panic attacks. When I allowed myself to feel the grief and anger, I became easily overwhelmed—crying profusely and unable to complete even the simplest task. I experienced word recall problems and memory lapses, making work impossible. I even had brief moments when all I wanted was to have Patrick back in my arms, no matter what it took to achieve that. This is grief. And it’s ugly.
Grief makes us uncomfortable. We don’t want to see people in pain. We want to fix it. Soon after a funeral, lives return to normal, and we just sort of expect everyone else’s lives to go back to normal as well. Have you noticed that the Gospels don’t really deal with grief? Jesus dies. Then what? How do you imagine Mary got through the day? Her son is dead—considered a criminal; murdered by the state. Does her community help her, or shun her? Nothing tells us how she moves forward. Or we’re supposed to move forward. How do we go on?
People would ask how I was doing, but there were no words to explain, so I lied and said I was fine, or sad, or “just hanging in there.” Most people did not want to hear the truth. I felt the anguish of the psalmist:
Be gracious to me, O Lord, for I am in distress
my eye wastes away from grief,
my soul and body also.
For my life is spent with sorrow,
and my years with sighing
my strength fails because of my misery,
and my bones waste away.
Because of my [grief],
I am the utter contempt of my neighbors;
I am a dread to my friends
—those who see me on the street flee from me.
I am forgotten by them as though I were dead
I have become like broken pottery.
And it hurts. We discover that there are some who cannot bear witness to our grief and others, usually those we least expect, step up and sit with us and help make life bearable while we learn how to pick ourselves back up and do the small things like breathe or shower or eat.
During grief, time passes in this strange fashion of quick and slow all at the same time, and I suddenly found myself nearing this one year anniversary of Patrick’s death with no idea how that year had passed. And I’m not done grieving. I’m not sure I ever will. But. I’m on the road to acceptance. Acceptance doesn’t mean no more hard days, or angry days, or sad days. It doesn’t mean that I’m done. It just means that most of my days are good. In the language of my day job, it is more likely than not that today will be a better day.
As I have emerged from the fog of grief, I have begun to figure out what I’m supposed to do now. Different ideas have percolated, but most of them have made me anxious because they all fall outside my comfort zone. “I can’t do that!” I tell myself. But if I’m honest, it’s that I don’t want to do it. The ideas would require more work, more discomfort, or expenditure of more time and energy than I feel ready for. I’m scared. The ideas involve risk, and I am a risk-averse person.
In my fear and discomfort, I have been reminded that everyone feels that way. Jonah was clearly called to be a prophet, but he made himself miserable trying to avoid doing the work God called him to do. Moses was called to guide and care for others in a new place, feeling unsure of himself, but having to be the adult to an entire nation.
Like Jonah and Moses, we are all called to do God’s work. Like Jonah, we hide. We run. Like Moses, we fall short or fail. We misunderstand. Moses even tells God, “Oh my Lord, please send someone else.” It is a comfort to me that even Moses, one of the best of God’s people, was imperfect and felt unworthy and not up to the challenges to which he was called. And yet, ultimately, Moses goes. Even Jesus submits to God’s will. “Not my will, but thine be done.” We, too, must try. We must let go. We must submit.
Now, here’s a dirty little secret. People will tell you to let go and let God. I just did. And we mean well. Because the truth is, when you’re ready to let go, it will be freeing. But if you’re not ready to let go, don’t. Letting go before you’re ready means spending a lifetime trying to pick it back up. So hold on. Hold on until you know that letting go is your best option. Even then it won’t be easy. Letting go is still a huge leap of faith. No matter when you do it, it is likely to feel scary. But, more often than not, when something feels scary—if it requires you to leave your comfort zone—God is calling you out because He is doing a new thing.
So this is me—doing the scary new things God has called me to do. I am turning my blog into a book in the hope that my journey will help make someone else feel less alone or make their path a little easier. And today. This sermon. This sharing of my journey with you. See, preaching—any public speaking really—is not my thing. I’m a writer. But through all of this, I have been called to share my story. So this is me—taking my leap of faith—letting go and letting God.
Thanks be to God. Amen.
A little over six years ago, I stood here and preached my first sermon while Phil was on sabbatical. It was 2009, and we were still waiting for a child. Still stuck in the darkness of infertility; not knowing if we would ever be parents. It’s been a full and unfathomable six years, filled with more doctors and shots and surgeries than I ever imagined. We had Mira and Patrick and life was complicated and crazy and tiring, but beautiful. But, as most of you know, one year ago today, we lost Patrick to complications caused by his congenital heart defect. Learning to navigate feelings of grief and anger while simultaneously working to enjoy and celebrate Mira’s life has been difficult. We have worked hard to find a new normal, knowing that it will only be normal for a while—until another change occurs.
Over the past year, I tried, unsuccessfully, to ignore my grief and shove it away in the name of functionality. When it refused to be shut out any longer, I struggled with depression, anxiety, and panic attacks. When I allowed myself to feel the grief and anger, I became easily overwhelmed—crying profusely and unable to complete even the simplest task. I experienced word recall problems and memory lapses, making work impossible. I even had brief moments when all I wanted was to have Patrick back in my arms, no matter what it took to achieve that. This is grief. And it’s ugly.
Grief makes us uncomfortable. We don’t want to see people in pain. We want to fix it. Soon after a funeral, lives return to normal, and we just sort of expect everyone else’s lives to go back to normal as well. Have you noticed that the Gospels don’t really deal with grief? Jesus dies. Then what? How do you imagine Mary got through the day? Her son is dead—considered a criminal; murdered by the state. Does her community help her, or shun her? Nothing tells us how she moves forward. Or we’re supposed to move forward. How do we go on?
People would ask how I was doing, but there were no words to explain, so I lied and said I was fine, or sad, or “just hanging in there.” Most people did not want to hear the truth. I felt the anguish of the psalmist:
Be gracious to me, O Lord, for I am in distress
my eye wastes away from grief,
my soul and body also.
For my life is spent with sorrow,
and my years with sighing
my strength fails because of my misery,
and my bones waste away.
Because of my [grief],
I am the utter contempt of my neighbors;
I am a dread to my friends
—those who see me on the street flee from me.
I am forgotten by them as though I were dead
I have become like broken pottery.
And it hurts. We discover that there are some who cannot bear witness to our grief and others, usually those we least expect, step up and sit with us and help make life bearable while we learn how to pick ourselves back up and do the small things like breathe or shower or eat.
During grief, time passes in this strange fashion of quick and slow all at the same time, and I suddenly found myself nearing this one year anniversary of Patrick’s death with no idea how that year had passed. And I’m not done grieving. I’m not sure I ever will. But. I’m on the road to acceptance. Acceptance doesn’t mean no more hard days, or angry days, or sad days. It doesn’t mean that I’m done. It just means that most of my days are good. In the language of my day job, it is more likely than not that today will be a better day.
As I have emerged from the fog of grief, I have begun to figure out what I’m supposed to do now. Different ideas have percolated, but most of them have made me anxious because they all fall outside my comfort zone. “I can’t do that!” I tell myself. But if I’m honest, it’s that I don’t want to do it. The ideas would require more work, more discomfort, or expenditure of more time and energy than I feel ready for. I’m scared. The ideas involve risk, and I am a risk-averse person.
In my fear and discomfort, I have been reminded that everyone feels that way. Jonah was clearly called to be a prophet, but he made himself miserable trying to avoid doing the work God called him to do. Moses was called to guide and care for others in a new place, feeling unsure of himself, but having to be the adult to an entire nation.
Like Jonah and Moses, we are all called to do God’s work. Like Jonah, we hide. We run. Like Moses, we fall short or fail. We misunderstand. Moses even tells God, “Oh my Lord, please send someone else.” It is a comfort to me that even Moses, one of the best of God’s people, was imperfect and felt unworthy and not up to the challenges to which he was called. And yet, ultimately, Moses goes. Even Jesus submits to God’s will. “Not my will, but thine be done.” We, too, must try. We must let go. We must submit.
Now, here’s a dirty little secret. People will tell you to let go and let God. I just did. And we mean well. Because the truth is, when you’re ready to let go, it will be freeing. But if you’re not ready to let go, don’t. Letting go before you’re ready means spending a lifetime trying to pick it back up. So hold on. Hold on until you know that letting go is your best option. Even then it won’t be easy. Letting go is still a huge leap of faith. No matter when you do it, it is likely to feel scary. But, more often than not, when something feels scary—if it requires you to leave your comfort zone—God is calling you out because He is doing a new thing.
So this is me—doing the scary new things God has called me to do. I am turning my blog into a book in the hope that my journey will help make someone else feel less alone or make their path a little easier. And today. This sermon. This sharing of my journey with you. See, preaching—any public speaking really—is not my thing. I’m a writer. But through all of this, I have been called to share my story. So this is me—taking my leap of faith—letting go and letting God.
Thanks be to God. Amen.
9.06.2015
The Scariest Thing I Have to Do
I mentioned before that I moved a lot growing up. By first grade, I had lived in three states. Mid-way through third grade saw state four. By sixth grade, I returned to state #1, but was on city #5, and house #6. At the end of eighth grade, we had lived in Indianapolis for three years, and I was miserable. I approached my parents to inquire about when we would be leaving, given our pattern of moving every 2 1/2 to 3 years. I was horrified to discover that they intended to stay put. I was going to have to face my demons and figure out how to deal. Realizing I was going to have to figure out how to deal with all the crap from middle school in high school was rough. I hoped that the influx of new people from two other middle schools would improve my chances of meeting people without preconceived notions of who I was, but ultimately, I ended up with a small circle of close friends I could trust while dealing with lots of rumors and bullying and crap. I bided my time until I could leave for college.
That was the first time I realized that, because we always moved so much, I had never had to really deal with any of my issues. When there were people who didn't like me, or who made my life miserable, I never really had to do anything about it because we would leave. It was never a conscious thing. I didn't try to make problems and get out of them by moving, And I always carried with me feelings that I didn't belong and that no one liked me. But, ultimately, I got to start fresh in a new place, where no one knew me, and I would find a few close friends and brave the world as best I could until it was time to do it all over again.
Recently, as I began to feel a nagging feeling to move, to leave, I began to excavate my feelings associated with all this moving and discovered that I wasn't so much starting fresh as running away. I was surprised. How could it be running away? After all, in the beginning, my family dictated the moves. I never wanted to move--at least until eighth grade--so none of those moves constituted running away. And then we didn't move when I had wanted to, so that wasn't running. And then everyone left for college--it's what you did--so that wasn't running, etc. etc. etc. There was always a reason I had moved, and it never had anything to do with conflict, so I always saw it as a moving bug--not as running away. Until now.
See, I've been struggling. Struggling to belong. To my village. My amazing village. The one that has done so much for me, and supported me, and helped me so fully and freely. The problem is me. In addition to having trouble asking for help, I tend to prefer to keep to myself. I usually have three or four really close friends--the people I turn to first and foremost for anything and everything. As I have moved, who those people are has had to change due to distance, but they are always limited in number. There are lots of reasons for this. Part of it is my being a pastor's wife and not being able to talk freely about the church and my relationships with many people. Part of it is because I am an introvert and have social anxiety. Regardless of the reasons, though, the fact remains that I play things fairly close to the vest with all but a small few of very close people.
Unfortunately, as my grief for Patrick continued, life moved forward on the outside, and, as sometimes happens with friendships, some of them fell away. Of the four people I knew without a doubt I could call on for anything, I lost three. Whether from grief, or busyness, or external obligations, I suddenly found myself alone. The majority of my village remained intact, but was spread out across the country where they couldn't help with day-to-day needs; and those who were close in proximity were not those I felt I could call at a moment's notice for anything because I had not cultivated those friendships in that way. Worse, I was incapable of attempting to convert any of those friendships into the type that I needed due to the anxiety and grief I was experiencing.
But as I dug myself out of my hole over the last few months, and my energy returned, my "move" bug began to bite. Then I began to have this nagging feeling that I want to leave; to run away; to start over. The mind talk went something like: "If I have to find new people anyway, I might as well do it somewhere else--somewhere I don't have all these memories; or somewhere I already have people I have let in." But that's not an option.
Our lives are here. My job. Phil's job. Mira's physicians and health history. For good or ill, all memories of Patrick. So I have to find my answers here, where I am. And that's hard. Much like starting a new school half way through the year, the relationships are set. People have already given of themselves to others. They already have "their people"--those whom they have elected to let in and be close and will allow to call on them at a moment's notice. It's intimidating and difficult to navigate, even for the most gregarious and sociable people. As a socially anxious introvert, there are few things I find scarier.
And so I have to trust. Trust that I am a likable person. Trust that others will see what previous friends have seen and that I will find those willing to let me in. Trust that I will find a new circle of three or four from which my village will extend. Confession time: I hate this plan. I despise that this is what I have to do. But my feelings don't change the answers. So, please be gentle with me. If I seem grumpy, or withdrawn, or standoffish, or awkward, it's likely not you. It's me. I'm trying to figure out how to, in the words of the old hymn, "Trust and obey. For there's no other way."
8.20.2015
Making Progress
I am pleased to report that I am making visible progress in several areas in my life.
I visited my doctor recently, and I have finally been able to remove meds rather than add them. We halved my anti-depressant dose and removed the Abilify and Ambien. It took about six days to wean off the Ambien, and my sleep pattern isn't completely back to normal, but the fact that I can sleep without the meds is fan-freakin'-tastic.
I also went on a writing retreat this week and finished editing my book (it comes in at a whopping 410 pages). The hardest part wasn't the editing; it was when I began reading the entries starting around last July. Seeing what we were doing this time last year; how we were making plans; trying to figure out our bifurcated life and seeing what we could do to make it work because we thought we needed a long-term solution. We believed Patrick had a future. Seeing the hope I had. The fear. The naivety. Reading those entries again was gut wrenching. It made me cry, but I wasn't a functionless puddle. I was still functional. I could still edit. And yet, I wasn't blocking the feelings. I let myself have them. It felt like real progress.
In other news, I am starting back to work in mid-September. I am really excited to see my co-workers and finally feel like a productive member of society again. Phil and I have found a house to buy that will give us a fresh start, Mira has given the house her seal of approval, and we should be closing in October.
Fall is coming. It's going to be full, but I'm feeling optimistic. As Phil and I like to say, "We're standing up and looking forward." Not to mention, pumpkin everything is coming. :) So, here's to my progress. Let's hope it continues.
I visited my doctor recently, and I have finally been able to remove meds rather than add them. We halved my anti-depressant dose and removed the Abilify and Ambien. It took about six days to wean off the Ambien, and my sleep pattern isn't completely back to normal, but the fact that I can sleep without the meds is fan-freakin'-tastic.
I also went on a writing retreat this week and finished editing my book (it comes in at a whopping 410 pages). The hardest part wasn't the editing; it was when I began reading the entries starting around last July. Seeing what we were doing this time last year; how we were making plans; trying to figure out our bifurcated life and seeing what we could do to make it work because we thought we needed a long-term solution. We believed Patrick had a future. Seeing the hope I had. The fear. The naivety. Reading those entries again was gut wrenching. It made me cry, but I wasn't a functionless puddle. I was still functional. I could still edit. And yet, I wasn't blocking the feelings. I let myself have them. It felt like real progress.
In other news, I am starting back to work in mid-September. I am really excited to see my co-workers and finally feel like a productive member of society again. Phil and I have found a house to buy that will give us a fresh start, Mira has given the house her seal of approval, and we should be closing in October.
Fall is coming. It's going to be full, but I'm feeling optimistic. As Phil and I like to say, "We're standing up and looking forward." Not to mention, pumpkin everything is coming. :) So, here's to my progress. Let's hope it continues.
8.16.2015
I Dreamed of You
As I headed out to Denver for my week of writing and relaxation, I found myself thinking a lot about Patrick. Between swiftly approaching anniversaries and editing my manuscript in which he features prominently, my mind has been full of thoughts and pictures of him, so it was no surprise that I dreamed of him the night before the trip. Thus, I found myself sitting in the airport, wanting desperately to write something, but not feeling like working on my book. I was surprised to discover that I wanted to write more poetry. See, I am not really a poetry person, or, at least I didn't use to be. Apparently, among all the changes that I have undergone from these experiences, feeling like writing more poetry is another to add to the list. So, sitting in the Detroit airport, sun blazing in the windows, I wrote a poem to Patrick.
I Dreamed of You
I dreamed of you last night;
that you were here with me.
I held you in my arms again
and rocked you fast asleep.
Closed eyes framed with lashes.
Your soft, contented sighs.
My heart swelled with maternal love
that made up for your cries.
Your small but wild patch
of red and curly hair
matched with a wicked grin and laugh
you never failed to share.
You wore a hooded shirt
of sea foam green and white.
It almost hid the cannula
that wrapped your face so tight.
You were alive again.
Just like in your last days.
I was so sure that it was real,
so piercing was your gaze.
Instead, it was a dream
But one I'm glad I had.
I got to feel your love again,
although it made me sad.
And though sometimes I'm broken,
and struggle with dismay.
Knowing you still watch over me
helped get me through my day.
I Dreamed of You
I dreamed of you last night;
that you were here with me.
I held you in my arms again
and rocked you fast asleep.
Closed eyes framed with lashes.
Your soft, contented sighs.
My heart swelled with maternal love
that made up for your cries.
Your small but wild patch
of red and curly hair
matched with a wicked grin and laugh
you never failed to share.
You wore a hooded shirt
of sea foam green and white.
It almost hid the cannula
that wrapped your face so tight.
You were alive again.
Just like in your last days.
I was so sure that it was real,
so piercing was your gaze.
Instead, it was a dream
But one I'm glad I had.
I got to feel your love again,
although it made me sad.
And though sometimes I'm broken,
and struggle with dismay.
Knowing you still watch over me
helped get me through my day.
8.09.2015
Untethered
I've had a rough day. Between witnessing the baptism of two adorable baby boys at church this morning--which reminded me of the two times we tried and failed to do the same for Patrick--and the realization that friendships have changed--resulting in feelings of loneliness and not belonging--I have just felt like running away and starting over. Fortunately, I had someone who could talk me down from the proverbial ledge and got me through the worst of it. And then I did what I do best--processed through writing. Here, without further comment, is the result.
Untethered
I tried to put down deep roots.
I thought that they were strong.
Until the wind uprooted me,
And taught me I was wrong.
Like a kite, free of its flyer;
Like a tent, with pegs pulled free;
I have become untethered,
From the life I built for me.
My thoughts are unrelenting,
Regardless of their truth.
I hope things will get better,
Although I have no proof.
So, with a faith that's shaken;
With a heart shattered and frail;
I try again to take root,
Before the next wind gale.
Untethered
I tried to put down deep roots.
I thought that they were strong.
Until the wind uprooted me,
And taught me I was wrong.
Like a kite, free of its flyer;
Like a tent, with pegs pulled free;
I have become untethered,
From the life I built for me.
My thoughts are unrelenting,
Regardless of their truth.
I hope things will get better,
Although I have no proof.
So, with a faith that's shaken;
With a heart shattered and frail;
I try again to take root,
Before the next wind gale.
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