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.