I need time to stop.
For the seconds to slowly trickle and the minutes to last a lifetime.
I’m not ready to see days turn into nights, to be closer and farther away…
There I was once more, running through airports last minute – MSP and JFK this time – to run to my mother’s side. On November 10th she had asked me to confirm my next visit to the island, and by the following Tuesday she had another episode. The very familiar steroids and anticonvulsants protocol had been rushing through her system for the last 5 days to give her a chance at regaining awareness. Her system was rebooting slowly, and she wasn’t talking or engaging as much as previous hospital stays. This time she was taken to the VA, or Veteran’s Hospital, in an effort to enroll her in a premier at home care program at the lowest possible cost, thanks to her Army National Guard military service. It didn’t hurt it had a more convenient location closer to the metro area and her current residence: my grandma’s.
I didn’t know what to expect, to be honest. Every time she has a convulsion she loses a little bit of herself, and this time around her communication center was severely compromised, lowering her cognitive ability significantly. So much so that psychiatric team’s evaluation had found her unfit to make decisions about her care. Even though the power of attorney is under my sister’s name, the family and oncology staff understood that I was operating on her behalf, and with my sister’s legal blessing. Never in a million years did I think I would be making life and death choices for my mother. Not at her quite young age of 62. Not a month before my 10th anniversary and the official 2018 winter holiday season.
Any semblance of having a vacation with my mom had been shattered as the doctors, who btw were all female, tried to reassure me that we would go home on Wednesday November 21st. Much less after they confirmed there was nothing left to do to stabilize her or prevent more damage. My mother was beyond the reach of modern medicine, and not even chemo and radiation would give her a shot at a higher quality of life. From this point on it would all go downhill, as fast as the cancer desired. We were at its mercy. Hospice care was the better option for her future care as it would avoid the emergency room visits. It was in God’s or your favorite deity’s hands now.
Reset the seizure countdown clock: 10 days or less to the next event, if the current pattern held.
Three to six months. That prognosis is a long, heart wrenching wait for those knowing they are dying. Counting down from the craniotomy in early September, we have three to four months left to enjoy her if my math doesn’t fail me. These types of news usually don’t go well with family and friends, but I seemed to have made it past the stress test with flying colors. Everyone was very impressed about the way we were handling the situation, especially with having set up from scratch her 24/7 at home care team. It is not very common for them to see people coordinate care from a distance as there is always a significant other, parent or sibling that takes care of the infirm on site, a luxury none of us have at this time.
The palliative care nurse accompanying the doctors gave me almost made me lose my composure. “Sometimes people need to be forgiven, even if you don’t think or know if they are seeking redemption. Sometimes apologizing works wonders even if you don’t know what you are apologizing for.” The words haunted me for the rest of the hospital stay. I had spent the last two days hoping my mom would regain some sense of self but it had been touch and go since she had seen me. People kept coming in and out of her room with meds and equipment since she was under instructions to stay confined to her bed. She was frustrated and tired, her words a jumble of ideas that didn’t seem to match her intent. I couldn’t make out half of the thoughts directed at me, especially since she couldn’t call out to me by name. If it wasn’t for the way she cries or lights up when she sees me, I would be hard pressed to believe she knew who I was.
Did she truly know it was me, her oldest daughter?
In the middle of the chaos inside my brain I hear the sweetest thing: “Te quiero”. I looked up and locked eyes with her, as she is sitting up in the bed. She must have seen the look of disbelief in my face because she smiled and said: “Mucho”. Ladies and gentlemen, the mother-daughter bond, ftw. The trick was that even with those beautiful displays of affection, she still has no clue what my name is. She claims her difficulty remembering is due to the fact that her daughters have weird names. 🤷♀️🤦♀️ A weight was lifted off my shoulders as her heart knew her baby was home, which also meant she was in deep do-do.
“Mom, we are here to celebrate Thanksgiving with you. It just turned out you landed at the hospital again. This time the VA.” Realizing things must have gone south to have landed in the hospital, my aphasia stricken parental unit decided to stage another very touching but very awkward moment: letting me know she was sorry for ever telling me I was a mistake. Her exact words were: “Fui una necia y debi haberme quedado callada. Tu no eres un error.” At some point early in my life we had gotten into an argument about her hating me for being an unplanned and maybe even unwanted pregnancy.
She patiently listened as I explained the way her constant exigency made it seem like we, as a team, were out to prove the world our worth; that we deserved to love and be loved without judgement or justification. The argument ended with a proclamation: In this house there’s no hate, no resentment, only love. Remembering how it used to be us against the them, until my sister arrived gave me a new perspective. I was my mother’s partner in crime, her only true ally (until my sister arrived) and her first great love. I was the reason her 25 year old naive and carefree self had to grow a pair, get a career and save for a bright new future; for her family and the many generations that would follow.
As she repeated “In this house, only love. I love you.”, her grip on me tightened. I almost had to call the nurse to get her off me because I was starting to get breathless. “Mom, it’s okay, I love you too.” She couldn’t stop the tears or the compulsion so we rode the wave together. There’s this unique space in time where it was just us, and my mother did an excellent job capturing my awe and excitement by providing lots of opportunities and experiences to grow, laugh and explore. My sister was a great addition to our clan but she never knew how hard mom had it as a first timer and single mother. By the time the second kid came around the then Major made it look so easy.
Whether you realize it or not many of our peers are clearing their own path to redemption, to forgiveness and acceptance. We all long for a place to call home and my mom’s always at peace when she is with her two girls. I never acknowledged how much of her is in us, and how even after she departs, she will still be here because of this. I can hear her in my laugh. I can see her in my sister’s profile.
The agonizing road to loss is full of so many wonderful memories. I wish none of this had to end. God, the universe, or whatever power that be: Thank You. I rather live knowing she was my mother than to have never met her at all. Only love is real…