It happens to the best of us... Something horrendous happens in our life and we just can't manage to blog while it's happening, and then it's all over and it feels like you HAVE to catch up, whether the readers need you to or not. But that's also the point of having a blog, is it not? To write for yourself...
So New Years Eve, J and I spent the first night in our new house. Monkey came over, there was snacks and playing and "no, don't play in that box" and sliding in sock feet on hardwood floors. Monkey had a ball. J and I were just exhausted. But, Monkey broke in our new house with us, and we really loved being able to have him here for such a momentous occasion.
Until.... My brother called. He said he just heard on the scanner (yeah, it's West Virginia, everyone has a freakin' scanner) that EMS had been called to my grandmother's house for an apparent stroke. In July, she had gone into septic shock, and I really kind of thought that's where we were again.
Someday, I'll try to explain Multiple Sclerosis better. It's really brutal and invades every single corner of your life - eventually completely destroying the immune system. Septic shock happens when the amount of infection in your blood is too much for your body to handle. Organs begin to shut down so that the body can better fight the interloper. A coma happens fairly quickly, and it takes LOTS of antibiotics to avoid death.
Anyway, they got her to the hospital, and she was pretty much unresponsive. They did a CAT scan to find the bleed (remember, everyone was thinking stroke), but what they found was a massive tumor on her brain. Because, you know, one debilitating disease isn't enough. She needed more. While laying in her bed, in a coma, she stopped breathing. The thought is that her brain kind of just forgot how. Eventually, she began breathing again, but the local hospital felt it prudent to go ahead and put her on a ventilator so she would survive the transport to the trauma center about 90 minutes (by car) away. Obviously, the ambulance can get there faster.
Once at the trauma center, she was pretty much left to stabilize over night. They left in the vent, put her on antibiotics, and tried to let her body heal. I don't think they really did or found anything new on Saturday either. She remained unresponsive, unsedated, on a ventilator. These are not good signs. That day, I told her, "Mamaw, soon, the doctors are going to start asking us to make really hard decisions about that ventilator. If you're in there, and you want to stay here, I need you to try to wake up and let us know. But if you're tired and ready to go, we understand. We'll miss you forever, but we can't hold you here."
Sunday: She began to open her eyes and respond to basic commands such as following an object with her eyes or raising a finger. She was basically breathing on her own, but they were afraid to pull the ventilator because putting one IN is a dangerous thing. We wanted to let her stabilize more. They also did a CAT scan with contrast of her lungs, and an MRI of her brain. We talked to her as much as we could, but she got really upset because she couldn't talk around the vent. To avoid upsetting her more, we tried to give her some rest.
Monday: The results are in. She has cancer. There is a large tumor on her lung, and several on her brain. These are inoperable. She would never survive surgery or chemo or radiation or anything else that they use on horribly invasive cancers. She begins to develop pneumonia. It's possible that she had a small case of pneumonia to begin with, but the ventilator is making it worse. She doesn't want us to take it out. She's not ready for that. After receiving the cancer news, I had a doctors appointment and hear my child's heartbeat for the first time. I grab my new ultrasound pictures and make a flying trip for the trauma center to share the news with Mamaw.
Tuesday: I decide to take a day off from visiting the hospital. Outwardly, all things are remaining the same. I'm exhausted from the emotional turmoil and the pregnancy. I just need a day to rest. Sometime Tuesday night, around 8-9, I think, my aunt called. Mamaw has massive pneumonia in her left lung and the doctors don't know if she'll make it through the night, even on the vent. We pick my aunt up and drive my race car as it was meant to be driven. Thankfully, there were no cops running radar. When we arrived, she was completely unresponsive again. My uncle had made the decision to sedate her pretty heavily so she wouldn't feel herself drowning. Her pneumonia-filled lung was overflowing into her mouth. We had to suction her every 5 minutes or so. While her oxygen saturation is dangerously low, her blood pressure was remaining fairly stable and her heart rate, while ridiculously high (135 on average) was strong. Around 1am, I decided to drive back home and try to sleep for a while. My gut told me that tomorrow would be a long day and the baby and I would need the rest.
Wednesday: My aunt texts me at 9:15 and tells me to come over because they're pulling the ventilator. Mamaw isn't expected to last long. I arrived to find that the ventilator was out, and all life-sustaining medications have been stopped (the big one was a drug to keep her blood pressure up). They had told her kids that she would have 8-12 minutes after the vent came out. We held vigil for 5 hours. It was 5 hours of every immediate family member crammed into her tiny ICU room, glass doors pulled closed, curtain drawn, and lights off. We told stories. We read Scripture. We sang hymns. We cried.
Eventually, the pallative care doctor came in. He said they had her on 12 liters of oxygen and that was what was still sustaining her. At this point, her BP was too low to register on the cuff. Her heart rate remained around 135. Her oxygen saturation held around 90. He said if we turned down the oxygen, she would fade fast, but peacefully. Together, we decided to turn the oxygen down to 3 liters, which is above what is normally used as a comfort measure. The nurses came in and turned it down, replacing her big face mask with a small nasal canula.
Within seconds, her oxygen saturation fell. Fast. The monitor kept saying the probe was off the patient. I remember scrambling to fix it on her finger, thinking (hoping) it was just a bad reading. Her heart remained strong. We pulled off the BP cuff and the pulse oximiter. Why leave them on to constrain her broken body any longer?
It was maybe 10 minutes or so... Her heart rate began to drop. 130. 120. 100. 90. I stopped watching and took a spot near her head. We all talked to her through the transition. We told her how much we loved her. How much we'd miss her, forever. That it was ok to go, to rest, to go where she would be whole again. It may have been 2-3 minutes from the time her heart rate started falling until it stopped completely. She was gone. We were all completely, irrevocably, broken.
I gave her one last kiss on her forehead, the spot I always kissed her, and I had to leave the room. I called my Mom. I called my brother. I called my ex-husband. When my aunt, uncle, and dad had finished the business at the hospital, we made a pilgrimage to the parking lot together. I'll never forget the empty feeling when I walked out the doors for the last time. We were supposed to be celebrating a(nother) miraculous recovery. Another act in this amazing play that was her life. Another Lazarus story. Instead, we were holding each other up. J and I got in our car and he drove me home. I texted my best friend. What I meant to type was, "She's gone." I typoed it through the tears, and my phone auto-corrected it to, "She's home." I left it that way, and cried a little harder.
I texted Mark to tell him we made it home. He offered to bring Monkey and dinner. I needed both, but I don't think I knew it. We ate, loved on Monkey, tried to hold it together. When they left, I fell apart all over again.
Through all of this, in West Virginia in January, there was no snow. It was cold, but it didn't snow. On Thursday, the snow started. We went to the funeral home to make the arrangements. The viewing would be Friday. The funeral Saturday. The blizzard was predicted to hit Friday evening.
I was terrified of how she would look on Friday. I didn't go into the funeral home until my mom arrived. I needed to lean on her through this. At the hospital, Mamaw's skin was blistered and weeping because of organ shutdown. She was turning yellow. Her face was dry and her lips were cracking. I couldn't imagine how they could possibly make her look "good" again. They did an amazing job. She looked younger and healthier than I had seen her in years. She was peaceful. It was hard - miserably hard - but I did it with the knowing that she was better off now. She was whole and healthy, with a fancy new body that no disease could take from her.
And the snow started. The roads were a MESS when we got home, but we survived. It occurred to me that Mamaw was born during a blizzard. It only made sense that the ceremonies marking her departure would happen during the same. Except the cemetery was about 10 miles off a main road, way back in the WV hills.
Saturday, we had the actual funeral. Her body was moved to the church, where she wanted it. The preacher did a wonderful job, even choking up himself when he talked about the first time he met her, what an amazing woman she was, and how much she would be missed. We sang some hymns, a few of the same ones we sang her at the hospital, mostly the ones we remembered her singing most. Her alto would ring out the strains of Holy, Holy, Holy like no one's business. It hurt to hear them without her voice, but it was necessary to remind me of where she is now. Her voice is whole again too.
That week was easily the longest of my life. I loved that woman to the ends of the earth and back. She was a paradigm of strength and dignity and faith and passion for what she believed in. She was also sick, and tired, and desperately in need of rest and rejuvenation. Do I miss her? Oh my, yes. I'll miss her forever. I'll miss her laugh and her smell and the way my son loved her. When this baby comes, I'll be sad that I can't share it with her. From the second I found out, one of the things I was looking forward to most was the first time I could take the baby to visit her great-grandmother. I wanted this baby to love Mamaw the way Monkey does. Now, it's up to us to make sure that both my children always know about her. When the pain lessens, I'll talk to Xavier and help him remember the time he had with her. He would always run to her bed and hug her arm. "I hug Mamaw Betty. I be easy." He would tell her each time we saw her, "I love you so much, Mamaw Betty." Her world got brighter every time that little boy walked into her house. They were best buds.
I still have moments where it hits me like a ton of bricks. "Oh no. She's gone. She's really really gone." I still have moments where I'm not sure how to move forward from here. She's been such a huge part of my life, of myself, that the void is just overwhelming at times. The only way I know to continue is to do my best to carry on her legacy. Soon, my aunt and I will begin the process of founding The Betty Roy Foundation. We will serve the mentally/physically disabled population of our community as she did. It was her passion, her driving force. It made HER a force unto herself. It will be a lot of work, especially without her guiding hand, especially with a new baby, but we will make it.
I've decided to name this baby in her honor, should we have a girl. My middle name is Lea, her middle name was Ann. The baby's middle name will be LeaAnn. If we have a boy, I'm not sure exactly WHAT I'll do, but I'll find a way to incorporate her.
Anyway, this has gotten quite long enough. I'm sorry for blabbering on so much. I need to go get a shower and get ready to go out. We're meeting a dog at the shelter this evening. We've both been wanting a dog and we found one online that we fell in love with. He's a 7 month old doberman mix. We'll meet him tonight, and if all goes well, begin the adoption process. We want to get him home and start training before the baby comes.
(Have you noticed that I don't seem to be worrying so much about the baby anymore? Hearing that heartbeat last Monday really helped me. My research says the odds of miscarriage fall significantly after you've heard the heartbeat. And it made it seem more real, I think. There's a living critter in there!)