Wednesday, December 27, 2017

Grief, and other midnight thoughts

It's 4am and I have been awake since 3am. I left my family dinner early while everyone was still hanging out because I was so very tired (like too tired for a social interaction, so that's obviously exhausted in my world since we all know I usually derive great life from social interactions). Paul packed up the kids for me, so I could take them home to bed with me with minimal effort, and he could stay and be with my family (so thankful for a husband that is willing to step in, AND wants to be with my family). I slept soundly at first but then woke to pee (#preggolife) and my brain will not shut off. It finally hit me that I was composing blog posts in my brain and probably wouldn't sleep until I wrote it all out. The thoughts were swirling in my mind and I couldn't rest until I released them. So here we are. 4am, on my couch, in my nightgown and robe, the room only lit by Christmas lights, blogging. 


I haven't written about my mom in a while. Sometimes it feels like there isn't anything to say. She's still alive and still dying. People don't know how to ask about her because there isn't much to tell - and if I barely know what to say about it, then what more could they say? A family member at Christmas Dinner asked how she was doing, and as we talked he made a comment that stuck with me. He said that we were slowly saying goodbye. What stuck with me wasn't the reality of the comment, but what it made me feel. I don't feel like I'm slowly saying goodbye. That was years ago. We have been slowly saying goodbye for so dang long. At this stage I feel like I've said goodbye, this woman I visit every week is in no way the mother I grew up with. This woman I visit every week is not even the woman I got to know at the beginning of this disease. This woman is someone entirely different that I don't know at all, whom I see every single week and don't know any better. I've said goodbye - there's nothing left to say - she doesn't understand my words anyway. At this point, the goodbye's have been said, and there is this...purgatory. This waiting. 

You know when you run into someone at the grocery store who you know but aren't like THAT close with and you say hi and make awkward small talk and then go your separate ways, only to run into them like 7 more times in the store in different sections of the store? At first, you make more polite conversation, then it's a nod or acknowledgment of sometimes, and often by the end, it's easier to turn around and go the opposite way when you see them heading down your aisle. It feels a lot like that but with a bunch of guilt and sorrow. 


We had a care conference for my Mom about a month ago. This is when the staff all sit down, with the family members present, to review the patient and make a plan for the coming year, after reviewing where we are. My Dad and sister are great at being able to separate their emotion in that moment so that they can engage with what the doctors, therapists, nurses, and dietician are all saying without the emotion overwhelming them. This time I was unable to do that (again #preggoproblems). Thankfully there was tissue nearby as it was all I could do not to break down. During that meeting, the doctor and head nurse both took time in their reports to note for the file, and to us as the family, how special and rare and important our family involvement is. They said they haven't often seen family that loves someone so well, so regularly. It caught me off guard. I so often feel guilty that I only visit her once a week, and that I feel such relief when I need to be away on a Thursday and get to cancel. What sort of person would feel that? (that's the lie in my head). But then I am reminded of the reality that most of these residents don't have their kids and spouse visiting them every day, that I don't even see my healthy family every week. That it's something not ordinary to do what we do. The truth tried to emerge in my heart - I know it means something to be there with her even though it's harder than hiding - but the lies sound so much truer and are so loud. It's so much easier to believe that I am not doing enough, not loving enough, not right for this situation. As the reality and emotion sunk in for me, my Dad said in response to the Doctor and Nurse, "it's what anyone should do." And of course, he's right. Family should be there. But it's also true that this is the hardest thing I do in my life, and I'm pregnant with twins, working part time and staying part time home with a baby and a toddler. Those are some pretty demanding things. And yet this weekly visit is the hardest thing. I felt like it needed to be noted in the conference that yes, family should do this but not everyone knows how to push through and be there - it's not easy - and I'm not sure what it would look like in our family without God. I'm definitely sure I don't want to know what it looks like without Him. 

I visit my Mom every week for my Dad and sister. There's definitely a part of me that does it for my Mom - but really I could probably live with that guilt - I couldn't live with the guilt of leaving the burden of care for my Mom on my Dad and Jenna. So I go. I often think that motivation disqualifies me from being loving to my Mom, but I feel like God has been reminding me lately that it's still a motivation of love. Our actions and motivations matter - and what is true is each week I keep showing up. That counts. 


My Mom turned 64 on December 18th. As the years have progressed, birthdays get harder and more awkward. How do you celebrate? Are you even celebrating or merely marking the progression of time? When she turned 60 we threw her a big party in Port Alberni - she was still able to walk on her own decently, and engage, but the decline was very near. This year she was wheelchair bound, unable to do anything (as she has been for the past couple years). I was dreading this day. Our family was to meet at my Mom's residence with husbands and kids in tow (boy do the kids help in moments like this) and it just felt so forced. Then as we gathered, a breath of fresh air rushed in. Jinky.

My Dad pays for companions for my Mom for the times we can't be there. He visits most days, often twice. My sister and I each visit weekly. My mom's need for social care is larger than all of that - she needs at least three visits a day - we've noticed that she doesn't get as upset as she used to when there are people there in the morning, afternoon and evening. This was something as a family that we could not sustain (and we don't have a huge network here of people who know my mom since we moved a few years into her disease). My Dad pays for a few lovely women to visit with my mom. Most of the people we knew through church, but one woman (Jinky) came through an agency. She loves my mom just the way she is. She delights in my Mom. My Dad always said this but it wasn't until I witnessed it that I understood. She truly seems to enjoy her time with my Mom. 

On this Sunday morning, she was not paid to be there. She chose to come down to my Mom's place to celebrate my Mom. She brought cake and orange juice for our families. She brought gifts for my mom that were perfect. She came in singing a birthday song I had never heard before, laughing and talking. She braided mom's hair and made the moment feel like a celebration. Somehow Mom actually was able to engage - she was awake and smiling and aware. There were still hard moments but something shifted for that visit and it felt like a gift. 


Gift giving. As I grew up this was a source of growth in my relationship with my Mom. Having an almost Christmas Birthday meant she spent years having combined Birthday/Christmas gifts, so as an adult her rule was that we had to get her two separate and great gifts. Pressure! As I grew into being a teenager and later adulthood I started to understand my mom well enough to do this with great success. And then the disease really took over and everything changed. The woman I'd spent years learning was no longer there, and now the gifts needed to be entirely different. Come this year, I hadn't even bought her a gift because I don't even know where to begin, and I see how much of her stuff just sits unused in her room. I love that Jinky knew what to get my mom (slippers and a cozy blanket to match in dusty rose colors - my Mom's favorite). I also, finally, feel comfortable not working so hard to get my Mom a gift, knowing that time with her, and care for my Dad are two gifts I can give. 

Almost every year for my Mom's birthday we went to Chemainus Theatre to see a play or musical - my Mom loved this. It felt special and festive; she LOVED experiences. This year for my Dad's Christmas gift Jenna and I bought us tickets to Cirque du Soleil Kurious. My mom would have loved it, and it felt so special for the three of us to go just before Christmas together. I LOVED the show - it was better than I'd hoped for, and it was such a nice gift for my heart. It felt like all those normal years, just before Christmas, making a special moment. It felt like a gift for Mom, or in honor of Mom, as much as a gift for Dad. 


Sometimes I avoid writing about my Mom because I avoid thinking about my Mom and often avoid talking about her. Sometimes it's easier to not acknowledge it. Sometimes there isn't much left to say. Sometimes I just don't want to bore people with the same update, with the same feelings. Maybe they aren't bored and I am reading their expressions wrong, I'm sure it's often care. But it still feels like I don't want to put this on people. It's really brings down a party. And honestly, while it is hard and makes me sad at times, its not all the time. Most of my life is pretty great. 

This journey is constantly reminding me of my need for God. There are so many ugly emotions that this evokes, so many real and honest emotions this evokes. There are good things and bad things and all of it needs to be held in tension somehow. One of the truest things in my relationship with God is that so much of it is about tensions. Pastor Greg is always talking about this, it feels like. How so much of our faith is holding two seemingly opposite and true things together and being ok in the middle of it. When I face hard tensions in life, there is comfort in knowing that God is a God of tensions and He can handle the extremes. There is peace in knowing that the range of my emotions on this subject are held in tension with God. I can go to Him in all of them. There is peace knowing that I am not condemned or rewarded in my thoughts and actions here - I try to be obedient and loving, yes, but that isn't my salvation or my condemnation. My salvation is already sorted. This is part of living that out - of trying to be Christ-like in the midst of the reality of every day - the good and the bad. 


And with that, it it's just after 5am and my brain is finally settling down. Maybe sleep will come now. My dear husband has already agreed to take the morning with the girls and let me sleep - lets see if my pregnant body also agrees :)
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