Have to say…it was amazing.
Lots to say about it, and lots to get out of my head on this idea of turning our life around…of changing the family tree.
Not going to do it tonight. It’s late, and I’m surprisingly tired.
This photo was taken the morning my mom died.
The week she went into the ICU was Spring Break week for me in school, so I pretty much moved into the ICU room with my mom.
That week was also Parent-Teacher Conferences for my son, and Student-Led Conference for my daughter.
Monday I drove like a bat out of hell to Des Moines, because the nursing home called and said she was going to Mercy Hospital (again) by ambulance. She’d been having trouble breathing. I left my home, 15 miles farther than the home from the hospital, and took the fastest way to the hospital (freeway). It’s a little longer, but you can drive faster (legally). I beat her there, so I waited in the ER waiting room next to a guy who appeared to be sleeping. I say appeared to be sleeping, because he would look like he was asleep, and then he’d lean over on my shoulder and try to continue his nap-taking. I would move, and he would sit straight up and then appear to go back to sleep, and then lean over again. This happened off and on for about ten minutes, and I finally moved. He smelled like poop.
After she arrived in the ER, they led me to another room, one that was darker and poorly lit, and asked me to wait there until she was processed and hooked up to machines and such. A doctor from the ER came into the room and told me that she’d stopped breathing on the way to Des Moines, and they had to put her on a ventilator in the ambulance. The machine was now breathing for her. Barry got there, and a chaplain came in to pray with us. (This made me nervous, because when he walked in, he said that the nurse called him and told him to come see us…that we would need him)
She was assigned to room 6 in the ICU, and we had to wear the yellow gowns and gloves (which I ended up pretty much living in for the week) in order to be in the room. I stayed Monday night. Went home Tuesday afternoon, for a shower, change of clothes, and Jessup’s P-T conferences, and then drove back to Des Moines for the night. The only visitors she had were a wonderful, caring couple from our church who drove down to see her. No one else came down during that whole week, and only Barry and I were there on Friday when my mom died. I’m sure no one expected it to end the way it did, and they all have busy lives, but she was proven right when she said that people would care for me, and people would care for Barry and the kids, but it wouldn’t make a difference if she were gone.
I stayed with her until Thursday, when I had Ainsley’s conference to attend, and I really needed another shower. I stayed at home that night, and left before the sunrise on Friday morning. I needed to be at the hospital early to meet with her doctors, and talk about the next steps. I took this photo (while I was driving-shh, don’t tell) because I felt it was a fitting picture, considering what I knew was coming, and what my future felt like at that point. I was facing a decision that I never thought I’d have to make, and I was (and have been) so torn by it. Did I make the right choice? Did I do what she wanted? Did the 36-year old me make the decision, or did the teenaged me make it? All I can do now is try to find comfort in the way things are now, and try to find the strength to go on.
I’ve been here again this past week or so. I’ve been having nightmares every night about my mom. About the choice I had to make. Dreams have always come easily to me, and this last week they’ve been dark. They’ve been looming over each day like a cloud. Knowing what they have been. Knowing that they are coming again. Fearing the sleep and rest I so desperately need.
Barry has done all he could to fix my outside, but my inside is still a lonely, ugly place. Someone recently walked up to me and said that it looks like I’m fine. It looks like I don’t miss her, and I seem to have gotten over her pretty easily. Then they followed it up with, “But, of course, you didn’t want her here in the first place, so you must feel such relief.”
Is that how people see me? A cold, cruel daughter that doesn’t/didn’t care about her mom? A woman who can just get over something like that without a thought or care? Do they think that what I’m feeling is relief?
Relief is not the word for it.
An overwhelming sadness I cannot shake.
Medicine hasn’t helped. New clothes haven’t helped. A new hairstyle…nothing is helping me to shed these feelings.
I can only hope that somehow I will find out that I’m not as alone as I feel in this. I’m wishing that a lot of things were now the way they were a few years ago. Wishing that I felt more cared for. Wishing that there were people to turn to…a pastor to look to for guidance and comfort. One who would’ve been there for me when the choices about my mom had to be made. One who would have at least visited once during that week. The chaplain at the hospital was so nice, and very caring, but it’s not easy to pour your feelings out to a man who doesn’t know you, doesn’t know what you’re feeling, and is never going to see you again. I have a lot of unfinished feelings about my childhood, and about my mom, and things she did and said to me throughout my life. None of those were a reason to let her go, but all of those factored into my decision-making. In one morning, I had to make sure that I wasn’t being cruel, I wasn’t getting back at her, and that I was truly doing what she would have wanted, and what was best for everyone. TRULY what was best. Not just what was easiest. THIS was not an easy decision.
I challenge God to show me His will through this. To make me believe that it’s really for the best. To show me that I did the right thing. That the decision made was in His prefect will, and that it isn’t my fault that she’s gone. He has not done so to this day. Maybe in the future. Maybe He never will. Maybe I will have to live with this forever, and I will never get over it. But, I will tell you this: I don’t ever want to have to bury or lose another person I love. It’s too much. I’m at the top of my family tree. I’m tired of losing people. It’s been one person every six years on average, and there are so few left to lose. Those losses would be so much more devastating. So much more painful. And they would cause so much more anger than I’ve felt before. I was so angry when my dad died. I’m angry again at the loss of my mom, when she’d finally moved her to be closer to all of us, and now she’s gone.
I wrote all of that on June 29, 2012.
It’s now January 10, 2013.
I still don’t feel peace. I still don’t know if I made the right decision. I am confident that taking her off the machines was what she would’ve wanted. She didn’t want to be attached to machines. She stopped responding two days before she died.
She. Stopped. Responding.
Monday and Tuesday she would squeeze my hand or wriggle her toes when I talked to her. Wednesday she stopped. No movement whatsoever. No way to know if she was still there.
How could I tell if she was still there? How could I know? She wasn’t brain-dead, but she wasn’t living, either.
Wednesday and Thursday, even into Friday, I begged my mom to answer me. To respond in some way. Before I had that final talk with her doctor, I begged her. I cried and begged her to let me know she was still there.
Still, I got no response.
I remember feeling so empty that day. My thoughts were unclear all morning, until I heard the phrases that I knew I needed to hear. The things I needed to know before I could let go.
1. Your mom will be on a machine for months…very likely for the rest of her life. She will always be in a bed. She will probably never walk again.
2. Your mom is not living her life anymore. This…living on a machine…this is not living. This is not the quality of life she would want.
3. Any measures taken, from now on, will be to keep her comfortable. To get her beyond this place, would take extreme measures.
I needed to hear that it was permanent, that her quality of life would never improve, and the phrase “extraordinary measures”. I knew that once I hear those terms, that I could let go.
And I did. It was like the fog lifted.
At her request I let go.
At her request I didn’t have a service.
At her request I made the decision to say goodbye.
And I’m still sorry. I still hate that I made it. I hate that I had to make it alone. I hate that I didn’t celebrate her life in some way.
I hate that the person to hold my hands while I prayed about the decision was a stranger. Someone I was unfamiliar with. The person who should have cared, didn’t. They weren’t there. They were less than an hour away and were never there.
She said no one would care if she were gone. She was wrong.
Life with her was never easy, but I wanted my kids to see a fun side to her. To see her smile and laugh. I don’t think they ever saw that side. She’d been in pain and sick from the moment she moved here. I didn’t see it often, but I knew that side of her.
I still have the dreams. I don’t sleep much. I’ll go for weeks with no dreams, and then I’ll have them for several nights in a row. I’m hoping that they stop at some point. To wake up in the morning without having cried myself back to sleep at least once during the night. I long for a full night of rest and sleep. I can’t even remember how good that feels. I only seem to know exhaustion. I’m learning to live with it.
There is no easy answer when you’re getting through grief. There’s no road map that is perfect for everyone. This landscape is far different from the one I traveled all those years ago when I lost my Dad.
So I walk. Sometimes I crawl. Alone. My heart continually aching for the parents that I no longer have.
I pray that Barry and I will be around a long time for our own children, and eventually for our grandchildren. I pray that the steps we’ve taken to get healthy will have been taken in time. That they will have been enough.
For now, here I sit, a sad, broken, lonely, little girl.
Today is March 23, 2013.
It’s been one year.
11:35 a.m., March 23, 2012.
One year since that foggy morning. One year since I held a strangers hand. The chaplain came in a few minutes after I arrived at the hospital that final morning. He held my hands as we prayed. God blessed me with the same chaplain nearly every time I called that entire week. I needed a familiar face, especially that morning. I got one. He was a very caring man. Empathetic, easy to talk to, and most of all, available. He was there. His was the face I’d seen all week. He and Nurse Abbey saw me through that week, with it’s terrifying and difficult decisions. Together and separately they offered me peace, hope, comfort, and clarity.
That week of being alone. That week of knowing, feeling, fearing what was on the horizon.
One year and 12 hours ago, I watched my mom draw her last breath. Her body struggled. It seemed to be trying, but all efforts were in vain. Her body had been breathing for 69 years, and it was habitually doing what it was designed to do. The last breath escaped. Her torn, exhausted body was, at last, still. For some time after they took the tubes out, I secretly hoped that she’d just keep going. That she just needed that final push to start breathing on her own. That somehow she would fight through it, and keep going. Finally, it was clear to me that she was gone. Her mouth was open. Her eyes empty. All that remained of her was her shell, lying on the bed, bruised, torn, scarred, and battered, but she wasn’t there anymore. After such a long time of being in pain, she was gone, and her body was at rest.
Today’s date will live in infamy…in my heart.
I still feel alone. I still feel orphaned. I know that God takes care of the orphans, but I still feel it. My people are gone. There is no one to call and brag to about my fabulous children. There is no one to call and ask advice on tough situations. There are no more Saturday calls that, while sometimes I would have rather done anything else, I looked so forward to.
I have, especially over the past year, seen a lot of my parents in my children. The quirks, and the annoyances. The humor, and the drama.
I miss my parents. I realize now how important it is for family to be together, and for us to make memories while we can. I realize that, while my childhood memories might be abnormal to many, they are mine, and they need to be remembered. Now they are all I have.
Mom, I miss you. Daddy, I miss you, too. It’s scary to be at the top of the tree. It’s lonely.
I hang on with all my strength, all the while trying to let go so I don’t suffocate what I have left.
I’ve been so busy hanging on, that I’ve forgotten how to fly. I’ve forgotten how to let the ones I love fly.
So, here’s to flying. Here’s to letting go. Here’s to not being so afraid of being at the top, that I lose my focus on the view around me.
UPDATE: I survived the day…not too much worse for the wear. In fact, it was a good day. And it ended well. And that’s always the best.
Someone told me yesterday that I have beautiful kids. Well, of course I do!
But I think it’s more than looks. It’s attitude. I think it’s that they’re happy kids. They are secure.
I believe that there’s a confidence and a joy that comes with knowing that you have a quiet, happy, love-filled place to go home to at the end of every day, and that you’re not going to walk in to World War 3…or something worse. A house that’s full of people, and completely empty at the same time. A house that silently strangles you with dread and fear every time you walk in. Like a coat of pain, that’s zipped up so tight, you can barely breathe.
There’s a simple joy in stability. I think, I hope, that you can see it every time you look at them.
I am not trying to say that I have some magic formula for happy kids, or that you shouldn’t make the changes that are best for your family. I’m just saying that my kids haven’t had to experience sadness. Not to such an extreme that it’s darkened them.
Sometimes I worry that this is bad. That when sadness comes, and it will come, they won’t know what to do. They won’t know how to deal with it. They watched me (and continue to watch me) go through losing my mom, and I fear that, because of the situation, because of my relationship with her, they haven’t witnessed a healthy grief. Whatever that looks like.
The home I walked into every day, for as long as I can remember, wasn’t happy. There was tension. There was an unspoken sadness. There was an inexplicable fear. I felt dread every time I walked into that huge, heavy, black door with the brass Dexter deadbolt. It was like walking into the unknown every single time. My dad said he would never divorce my mom, and that was it. No matter what kind of crazy stuff she did, or how she hurt him, or me, he kept his word. He quit good-paying jobs to stay home with me, and be there when she was. He took terrible jobs, with terrible hours, so he could be there for me. He did everything he could to make life bearable, and it did. Mostly. He tried to keep his promise, and keep me happy and safe at the same time.
There was an incident when I was in third grade. I only have vague recollections of it, but I remember it being bad. So bad, that he and I moved to California that Summer, and I spent the Summer in Camarillo, California with my grandparents while he found a job nearby and my mom stayed in Arizona. I was told that the only job he could find was in Ventura (12 hours from my home), so he could stay at my Uncle’s house, and I could stay with Granddad and Suze.
Of course, this was quite an adventure for me…a whole summer! Swimming, and going to the beach, and volunteering at a hospital…it was awesome! I don’t really remember missing my mom. I got to talk to her every week on the phone, while my dad was in the room, and then I would leave the room and he would talk to her alone. I had my 8th birthday that summer. I remember him asking me if I wanted to go home or stay in California when the Summer was over. I don’t remember feeling the weight of that question like I do now when I think of it. Had I been any older, I wouldn’t have chosen to go back to her. Only a couple of years later I was fully aware of what it was like to live with her, and how I hated it.
I only ever doubted the “only job I could find” thing after the last phone call I ever had with my dad. It was the day he died…only about an hour before, in fact. He said something about taking me away, but not being able to keep me away. Not being able to break his promise, and that’s why we went back. That a girl shouldn’t grow up without a mom. It was years before I put the two together.
That choice, going back, made me who I am today. Every decision he made, made me who I am today. For better or worse. And isn’t that all we can do as parents? Make the best decisions we can for our kids? Do what we hope is the very best for them, every day, and pray that they don’t get too screwed up in the process?
That’s all I’ve done. I believe that the best thing, the glorious ideal, is for every mom and dad to stay together. Barry and I have had to work very, very hard to do that. There’ve been times…for both of us…that it seemed like too much. But we tried again the next day, and the next, and eventually it all settled out again. There has been so much forgiveness, and letting go, while still holding on to each other. I have found that it’s impossible to hold on to the person and their faults at the same time. You have to let go of one. If you choose the person, you cannot hold on to all the crap that comes with them. If you choose the faults, eventually your clenched fists are holding on to their faults so tightly, that the person you love slips out of your hands. <—Read that part again. It’s the key.
I am not naive. I am completely aware that sometimes it just won’t turn around. It just cannot work out. I have so many friends who’ve given all they had, and it wasn’t enough. I have other friends who’ve stayed too long, and that did more damage than good…especially to their kids. Still others have been broken and damaged in the most painful ways, and have somehow found the courage and strength to forgive and go on. To let the “stuff” go, and hold on to the person.
So here are my questions:
How long do you stay in a situation that is worse than leaving? How long do you stay when you fear for your safety, or that of your kids? How long do you try before you realize that you are broken, and your kids are damaged, and that leaving really is the only option? How much hurt do you endure? How much can you take and still, somehow, stay and fight for the one you love?
Am I damaged? Yes. Have I been broken? Yes. Should my dad have left? I have no idea. I don’t know what it would have been like without my mom. I only know what it was like with her. I know the reality of having two parents that stayed together “for better or worse, in good times and bad, until death parts us”. And death did part them. But sometimes, I think they were parted long before that. Back when I was turning 8 without my mom. Back when I was having such a glorious adventure, and learning to swim, and getting to know my grandparents. I don’t think it was ever the same at home after that. My dad later took a job that got him out of the house regularly, but when he realized what leaving me with her for days at a time meant for me, he quit that job, and took a terrible, smelly, dirty job in town. But he was home every night, and he was the first one the school would call if they needed to.
Sometimes protection is love. Sometimes, when you’re not able to walk away, all you can do is wrap your kids up in your arms, and hold them tight through the storm. Storms still come when you stay. They come and they pound you with all they have, and you get battered and bruised, but when it ends, and the sun is shining again, you pick yourself up, dry yourself off, and go again.
Stability comes in all kinds of packages. Sometimes it comes in one parent at a time, rather than two who aren’t really there at all. Sometime it comes in Grandparents, Aunts and Uncles, Guardians, Foster Parents, Adoption…
I can only write from my own experience, only from my side of the story. I can honestly say, that I believe Barry is much easier to live with than I am, so, most of the time, I think he got the raw end of this deal. But he has stuck with me though it all. And I with him. We have held on to each others hands, rather than our faults.
You don’t judge me, and I will never judge you…I will celebrate you for doing what’s best for your kids…no matter what that looks like.
Here’s to real life. To not being glossy and polished, but being dirty and real. To being strong. To being faithful. To forgiveness. To letting go, and holding on tight. To being the best that you can be, for yourself and your kids. *clink*
An ACTUAL conversation…
Jessup hugs me every night…
Barry said something (I can’t remember what), and Jessup said he wasn’t going to hug him tonight.
I said, “Hey, he gave you life. Hug him, too.”
Then…I don’t know what I was thinking…I said, “You know, you’re half sperm.”
His face morphed into a look of disgust, and he said, “Yeah. I try not to think about that. Ever.”
Then he left the room.
Barry hollered out after him, “Goodnight little squirt!”
Jessup’s retort: “Goodnight, Donor”.
We are trying so hard to screw these kids up.
Today is Jessup’s appointment with his pulmonologist. I always get so nervous for these appointments. You wouldn’t know it to look at me, but I’m really scared each time we do this. So, four times per year, I’m scared. Well, more than that, but these four times are scheduled events.
Someday I will write all the terrible details of these visits, and the sadness and fear that has entered my life due to them. For now, I will admit that these appointments typically go well. Surprisingly well. I have no reason to believe that this one will be different, but still I sit here, scared.
One of these days, the news will be bad. It won’t be an easy appointment. It will be sad. It will be filled with tears. It will be the beginning, no, the continuation, of something that began many years ago. April 11, 2007 to be exact. That was one of the worst days of my life. There was a diagnosis. We were told there is no cure. No medicine that we can give him. As many miracles as there are for so many people, there is none yet for us. No pill to take. No shot to give. There are unproven preventative measures, but nothing more.
So we continue on with the preventative measures his doctor feels are best, and we hope. Pray. Cross our fingers. Do a juju dance. Whatever works. Whatever makes us feel better.
Today Jessup drove. From home to the mall, which is where I sit, typing this. I’m not nervous with him driving, but I have a hard time not telling him to do things my way. He is very safe. He has his own way of doing everything, but he’s very cautious. He must learn to navigate the city, and the middle of the day on a Tuesday is better than any other time I could think of. Soon enough, he will be doing this on his own. Soon enough, he will be hearing the bad news without us. Soon enough, it will just be a phone call with the news that his lungs are badly scarred and possibly failing. Soon enough there could be a lot of scary possibilities.
For now we visit the doctor every quarter year, and hope for the best.
I can not remember if I took my medicine this morning. I always roll out of bed and take it before I do anything else…that way I know I did it. This morning I was in a sleep and Irritation-induced haze, and I cannot remember. I can’t take it now because if I already took it, that would be bad. 40mg of Adderall running through me would probably not be a good thing. I was irritated because I was awakened an hour before the time necessary to take the kids to school. I was then informed that I said “just last night” that I need about an hour in the morning to wake up before I’m ready for humanity, so this person thought they should get me up early. I growled something back at them, and then heard them mumble as they walked down the hall, “Maybe I should’ve gotten you up earlier”. At the time that was not funny. Now I see how this person, this wonderful, giving, awesome human being, could only be my kid. I’m not a morning person. (reason #742 why we don’t have a dog) Our home has a warm side and a cool side. The cool side is where I sleep. The warm side is where I work. If only I could remember that when I get up. Every morning I get dressed on the cool side. Sweats, tank top, sweatshirt, socks, slippers. I then go down and across the hall where I proceed to take off slippers, socks, sweatshirt, and then eventually go change into my capri yoga pants. Why does this happen? Why can’t I remember? The temperature difference is significant. Probably a 5-8 degree difference. Crazy. I half-cleaned my office yesterday. (Maybe that sounds like I didn’t try or I did a bad job…I did a good job, I’m only half finished) I listen to a teleconference every Tuesday and Thursday for work, and while that was playing yesterday I started to clean my office. I cleaned off a shelf, moved books from one bookshelf to the other, moved work stuff to the closer bookshelf, cleaned out a bunch of drawers and filled them with things that would be useful rather than things that don’t have a place, and cleaned out my favorite chair (which contained three sweaters, a robe, a long-sleeved shirt, two sweatshirts, several pairs of socks, my old slippers, my newer slippers, and some Reese’s peanut butter ‘big cups’-which have yet to be eaten, even though I squealed when I found them). Did I mention that my office is warm? Today I must finish, otherwise my progress will be unnoticeable very soon. Is “synced” a word? It doesn’t sound right. I ask because I was going to mention that the last song I bought on iTunes was one that my son already bought on iTunes, and that if I had just synced my phone with the old computer, I would have had it for free. But I didn’t know if synced was a word, and I don’t want to sound like an idiot, so maybe I won’t mention it. You know how a word can sound right or wrong, and you just can’t tell. You could google it, but that’s a lot of work (no it’s not, I’m just that lazy today), so you ask the five people who read your blog, and most likely none of them will answer, but you’re going to forget about it now anyway because you asked the question, so it will be out of your mind. I thought about live-blogging what I found in my desk when I cleaned it out today, but that would be dull for you. There are some pretty interesting things in/on here though. Maybe I’ll do a “Cliffs Notes” version. Is it Cliffs Notes, or Cliff Notes? I always say it with the “s”. I think that’s right. Again…Google is hard. Who is Cliff? Why do we care about his notes? (They did help me out in high school, though) *ashamed* CONFESSION: American Literature…there was a book I didn’t read. I’ll say I did, because whomever this Cliff person is, he takes good notes…but I didn’t read it. Got a “B” on the paper I had to write. I read chunks of the book, because I needed some references that came out of the book (so it would seem as though I read it). It was one of those books that they say “everybody should read this book because it’s such a classic piece of American Literature”, but I still never read it. I should have just read the book…I’m pretty paranoid about certain things so, in order to not get caught using Cliffs Notes (I’ve decided I like the “s”), I read so much of the book that, in the end, it would’ve just made sense to read the whole book. Too bad they didn’t have audio books back then. I would have totally read every book in high school if there were audio versions. (If there were, don’t tell me…but I don’t think there were.) I started a sentence up there somewhere with “but”…I apologize. I mean, I do what I want, but I do know the rules, and that was an unnecessary thing to do. If I weren’t so lazy today, I’d go fix it. Instead, I’ll just type out all these words about it, which will take up more time, but then you’ll know that I know that I was wrong. More importantly, I’ll know that you know that I know I was wrong. Jessup bought me a donut this morning…isn’t he sweet? I think the Sleepytime tea most of us drank last night actually helped. Also…Jessup is in a musical this weekend, and I’m so excited! Bye Bye Birdie!!! YAY! Can you imagine how many cassette tapes it would have taken for an audio book? Maybe it’s not as many as I think, but you’d at least have had to have one of those case thing-y’s for it. How fun would that have been to haul around? You’d need a boom box to listen to the tapes, those giant head phones that they had back then (which have made some kind of strange, rapid reappearance, and it really only makes people look like they’re wearing earmuffs), a case of cassettes to listen to…and then a cell phone that was so big it had to go inside a briefcase…you’re hands would be full all the time. (I know there were Walkman’s back then…) Should I have put those two “ly” words together? Meh, I do what I want. I’m thirsty. That is all.
We all become friends because we have things in common. A choice we have made at some point in our lives has brought us together. Through that commonality, we have discovered these things, and gotten to know one another. Can you imagine how many times we’ve decided NOT to do something that would bring us to know even more people, and how many people we might have commonalities with are wandering around whom we have yet to meet? Every time you don’t go out, you might be missing out. Every choice we make has unintended consequences. By making a (sometimes) very quick choice, we can meet people who will change our lives forever, people we will love forever, people who will change us, and people who will help us grow in ways we cannot even imagine. The miracle of this life (one of them) is that there are always more people to meet. There are always more people out there who will challenge you, and forever change who you are right now.
I was angry at God, and a friend made me make a promise, and because I made that promise and kept it, I’ve been married for 17 1/2 years. Where would I be if I’d just kept driving and ignored that promise? What would I be like if it weren’t for that moment in time when I said I would try something new? What kind of person would I be if I weren’t who I am? If I weren’t married to him, would I be a different person? Would I be in a different place? Where would I live? What would my job be? Who would my children be? I didn’t intentionally cut him off on the freeway that day. I decided to keep a promise. And here I am.