Tuesday, January 12, 2016

The slow fade

Christmas Day - Mom couldn't join us for any meals as she can't get in either of our houses (stairs) and only eats pureed meals fed to her anyways. We made the best of it though and spent a couple hours on Christmas walking the seawall - I was dreading this time because I couldn't imagine it would be as lovely as it was. It was a crisp, cool day, with a bright sun. The views were amazing and the company was perfection. It was a Christmas highlight.

Lately life has felt extra poignant. I spend each day with my sweet baby girl who is growing and learning and is just so engaging. I also spend time with my mom, who is fading and shrinking and disengaging. The juxtaposition of these two life stages is not lost on me and at times, is hard to bear. Mom's state has declined greatly - she is wheelchair bound, prone to seizures and is often quite out of it. She has been loosing weight (which is a sign of the end) - we like to tease her that she's finally reaching her pre baby weight. That does get a smile out of her - she always longed to regain that girlish figure. This week her floor is on quarantine because of a G.I. outbreak - and so visitors are kept a minimum and that is hard too - she is quite alone there it feels. She shakes in her chair at times - agitated, wanting to get out. She loves when we walk - Dad pushes her wheelchair daily all around the seawall - even if she sleeps through most of the walk it seems to be a highlight of her day. Each week when I see her she seems to get worse - and each week it seems to me like it should be the end, and yet time marches on.

Lately I have watched friends and loved ones reel from sudden death or illness - healthy people who suddenly get sick. I watch my friends pray for their loved ones to be well. It makes me realize how far we have come with my mom's sickness - we no longer pray for healing. We pray for a release from this life - for peace. We pray that mom would be with Jesus, with a whole, well body. It feels so hard to pray that and yet it is so hard to watch the life she is resigned to. I admit that when I heard of someone passing after struggling with an illness, I often struggle with some jealousy. That is the release I pray for my mom and it is so long in coming. And then of course, I feel even worse, because obviously that family would also give anything to switch families. Disease and death and grief bring out all manner of hard to face emotions and feelings. I think I spend more of my time trying to not feel most of what comes with this situation because I'm not quite sure how you give in to the feelings without going insane. 

My mom has been sick for my entire adult life (13 years). Granted it's only in the past 5-6 years that it's been really really life changing and in the past 3-4 years that it's been really bad. But either way, Mom's illness changed her from the beginning. Aside from the first few clear years, this sickness made her feel like a different person. By the time the disease was diagnosed (4 years into it) her personality had begun to change. I got to spend two wonderful summers at home around that time and I'm so thankful for those memories of her last moments as the Mom I knew. After that she became the new Robin, the sick Mom. Her personality was pleasant and warm, and yet was missing the spark that she had always had. 

This family selfie was taken with my aunts and cousin the night we went to the new Annie - at that time Mom was still well enough to get in and out of a vehicle (with great effort) and walk on her own. We are all smiles in this photo and yet the night was very hard - we struggled to get mom out of the theatre and down the steps. I remember feeling so helpless trying to help her, knowing she was scared and frustrated. 

This photo was taken the week Mom went into a care home - one of the hardest weeks of this whole sickness. Thankfully she has grown to love her home - Yaletown house is amazing and they treat Mom with care and dignity and love her immensely.

When I think about what this means for me - to have a Mom to care for, and yet no Mom to look to as I raise my own daughter - I can't help but wonder what it would have been like. It's easy to imagine it would have been this perfect vision of babysitting and laundry folding and house cleaning help - and yet in reality, I'm not sure that would have been the case! Mom hates to clean - she is the reason I feel totally great about hiring a housekeeper to help with the cleaning - that was always the norm in our house! She was never quite sure what to do with babies - how would she have handled Avelynn? Mom's best advice on raising kids (or how to deal with colds or how to cook a potato or how to get a stain out) was usually to go ask one of my Aunts - and God has graciously given me amazing Aunts who are able to be in my life today and are invaluable to me. Would the day to day look much different? Mom's illness has given us a focus in relationship - yes we miss out on shopping together, and cooking together, but we have gained our weekly visits to walk and talk. The approaching death gives a urgency to get togethers and we make these weekly visits a priority. 

These pictures don't include Mom - but she was right there with us in each of them. In the above sisters photo, she is lying asleep in her wheelchair covered entirely with a poncho to keep her warm while we walk and grab starbucks on our weekly visit. Below is a photo of my Auntie Lesley, Mom's sister, and Avie. As I take this photo I'm standing next to my Mom who is lying in an emergency bed because of a series of seizures. We spent the day there with Dad. I take these happy pictures in hard times - it would be easy just to see the happy but each picture also reminds me of what is behind the scenes. 

She has been my mother for 32 years - and yet she has only been able to mother me 22 of those years. The roles have switched in the past 10 years. I didn't expect to spend these last 10 years helping care for her - visits to the bathroom, helping her get dressed, pushing her wheelchair. And yet, when she signed up to be my mom she didn't expect a premie baby, a lonely ADD child or a prodigal daughter. And she dealt with me in all of those situations with love and grace - and lots of imperfection. And that gives me the freedom and grace to do the same. I don't know how to do this whole, loving a sick person, thing. It's not natural to me the way it is to my sister - and yet it is ok. This is my Mom and I will do what I can. God made me and put me in my family and He knew exactly who He had created me to be. 

I've written more about my mom and this journey here, here, here, here and here
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1 comment:

Kikanwa Morgan said...

Thank you for being so open and vulnerable Tara. I enjoyed this piece.


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