Monday, March 25, 2019

In Praise of Inconvenient Love

On Thursday, I bribed my children with extra screen time to visit our neighbor in the hospital. I'd never had to do that before, though sometimes I had to talk them into visiting her. I think that, if pressed, they would have said yes without the promise of screen time, but the sights, sounds, and smells of the hospital are hard to take even for me, so I thought I'd make it an easy yes for them. My hope was that it wouldn't be long until she was placed in a care home, where things would be a bit more stable, and she could be a bit more comfortable, with more of her own things around her. We would stick it out with the hospital visits until then. We always saw her on Mondays and Thursdays if we were around, and that was not going to change.

Except that it did change.

Five hours after our visit on Thursday, I received a message that she had passed away.

We are still in shock. We are terribly sad. We loved her a ridiculous amount, and we didn't even know how much until she was gone.

Loving a neighbor isn't always easy. There were things about our neighbor that were inconvenient, maybe a little challenging. But I am here to say that love that is inconvenient may be the very best kind of love. It will surprise you with how much it gives back to you when you invite it into your life. I wish we had more time for the inconvenience that came with loving this neighbor. I wish we had years more of arranging our schedule to include visits to her. I thought we would have at least one more. But we don't. And so instead we have our memories of her.

She laughed easily. She gave generously. She made us welcome in her home and in her life. She held the girls' dolls, told us she liked our clothes and shoes, insisted that we take home sweets and random things from her fridge. She let the kids take charge of the remote to her television and watched what they chose as if she liked it (I'm sure she didn't always like it). She had a big heart. We were well loved, and I'm sure it wasn't always convenient for her to love us. But she did, and we will remember this the most about her.

Wednesday, March 20, 2019

The Things I Don't Regret

My E is growing tall, all arms and legs and sudden grace as she grows into them. I watch with wonder, remembering the past, remembering carrying her through an enormous airport in my arms, so light I never had to shift her position to be able to carry her more easily, though we walked and walked and walked. She is no longer small. She has grown, healed, made her way in this life in ways that have surprised everyone. She is a wonder, through and through.

As my own children grow, I find myself reminiscing about our first days as family to each of them, sometimes prompted by observing lives of others who are welcoming children into their families in the same way we welcomed our children into ours. Older toddlers will always remind me of my Z and the joy of getting to know her. Any child who joins a new family and ends up in a hospital fairly soon thereafter reminds me of E and all those hospital days.

I have been watching one such story unfold. I have debated about whether to speak up or not. I'm not interested in naming or shaming a family who may be doing the best they can. But this is also a high profile case, and I know that some people may feel inspired by this family to explore adoption as an option for adding to their family. I think that the impressions I get from watching this family (and not knowing everything) may be impressions that others are taking away as well, and I feel that in this light, it is important to speak up about best practice for newly adopted kids with complex medical needs.

I am not a perfect parent. I have made loads of mistakes and will likely make loads more. But there are some things that I do not regret. One of those things is always putting our most vulnerable family member first in line to get needs met. In E's case in particular, this meant having a parent available to stay with her when she was in the hospital, every time she was in the hospital, for as long as she needed to be there. We wanted to set the precedent that we would always be there for her, especially in her most challenging and painful moments. No matter what. We wanted to show Z that this is how we do things as a family - everyone's needs get met, and we all work together to meet the needs of our most vulnerable member. She experienced this in her own story; we made big adjustments due to her needs when she was in a vulnerable position.

And Z's needs did get met, too. Was her life different than normal while E was hospitalized? Of course it was. She knew it would be, and she accepted this with grace. She was a key part of our family team, and her presence at the hospital was a delight to E. She is still E's favorite person to hang out with, nearly seven years later. Z stayed with someone else during the weekdays (usually a family member), but she could come to the hospital anytime she wanted to see E and me. We all met up at the hospital for dinner each evening. Then J would stay with E while I went home with Z and put her to bed. I'd shower, return to the hospital, and J would go home to sleep and attend to any needs Z had in the night or in the morning before he left for work. On the weekends, we'd switch, and I'd be with Z all day.

It worked. It was hard, but it worked. And I believe that it contributed in significant ways to E's healing, but also to her budding attachment to us. Even now, when she is feeling insecure, we can tell the story of her life, and how we did not leave her side when she needed us most. Hospitals are hard places to be. Imagine being a child, in a new country, in a new family, and having to contend with hospital life. It made sense to us to be there with her, for however long it took. We were lucky, because none of our hospital stays extended beyond four weeks. But if it had taken longer than that, we were committed for the long haul.

Would this have been nearly impossible if both J and I had needed to work away from home? Yes. Absolutely. I recognize that privilege. I recognize the work it took on the part of our extended family, who often flew in from thousands of miles away, and our friends, who were on call for us when we needed them. There were a lot of people in place in our lives that made this happen. We did not do it alone. I am not going to pretend that we did. But I am also not going to pretend that we didn't make sacrifices as a family to make this happen, or that we didn't prepare for and consider the practical implications of her level of medical need before we brought her home with us. That was an essential part of the process. We knew that because I was home with Z already, we were afforded flexibility that would make medical care easier to accommodate.

This is what I want people to be prepared for if they choose to adopt a child with complex medical needs. Your child will likely need to spend more time in a hospital than you ever dreamed they would. Please, please, please, for the sake of the child who may join your family, be honest with yourself about if it is possible for you to meet the child's needs with the resources you have available. Do not look at the selective things that people share on Instagram and think that is all that will be required of you. There will be more, so much more.

It will take a toll on you. It will take a toll on other members of your family. Can you handle that? Can your other children handle it? Be ridiculously practical about this, before you commit your heart. All these sacrifices will be worth it - we have no regrets about all that hospital time and what it took to be there - but it will be work. If you cannot do that work, that's ok. It is better to admit that it is not going to work well than to find yourself in a situation in which your most vulnerable family member cannot be cared for as they deserve to be cared for.

And an aside, for those who are of the Christian persuasion (as I am myself): you will hear a lot of people talk about the healing of a child as being glory to God and talk as if adopting a child is being part of their physical healing and even their salvation. I don't like this sort of talk at all; I think it leaves out a lot of the conversations we need to be having about adoption ethics and good practice in adoption and family preservation. I will tell you honestly that I believe that the help I received from God and the saints when I called out for it has helped both of my children immeasurably (as it has helped me as well). But God responding to my cries for help for my children does not absolve me of my own responsibility to them. I cannot say, "God's got this!" and then make choices that will leave my child in a vulnerable position.

Our kids are only kids for a short time. There will be other things which clamor for our attention during their childhoods, which may seem important, but please consider this. You cannot get those early days, weeks, months, and years of pursuing attachment  and trust back if they are used up on other things. There will always be other things, worthy things even, to demand your attention. But your child will only be a child for a little while. The window of opportunity for your influence in their life will narrow more quickly than you imagine. It will go by in a blink. If you are not prepared to use the time that you have to attend to their needs, if you feel that there is something else that you must do that will prevent you from being the best possible choice for their future, then don't move forward.

I know this may seem overly forthright. I do not mean to shame anyone, and I am not pronouncing judgment on the choices of the family I have recently observed. That is not the point of this post; the point is to protect and care for children by giving others the information they need to make an informed choice. I believe that there remains a big gap in education about adoption of children with complex medical needs, and that agencies are not doing their due diligence in many cases to ensure that families know best practice and can follow it. We cannot know everything by looking into the window that social media provides to a family's life. So do your own due diligence. Be informed. Make the choice that is best for the child.

Friday, March 15, 2019

Let Us Not Plant Sorrow

When I woke up this morning, I read of the terror attacks on mosques in Christchurch, New Zealand, and I felt deeply grieved. We have many mosques in our community, and many Muslims are our friends and neighbors. I believe that I have not spoken out enough about respecting and protecting them. It should not take a tragedy of this magnitude for me to remedy this. But here I am.

I have come here today to address my fellow Christians in particular. Of course you are welcome to read along if you are not a Christian. But this is a message that I believe that Christians need to hear. Because we have been the ones who have helped to create this problem.

I grew up being taught that anyone who did not accept Jesus into their heart was destined for hell. Various religions were mentioned, and Islam sometimes singled out. I was told things that were incorrect about what Muslims believe. Seeds were planted that would lead me to think of others as lesser, as wrong in the worst way possible. Friends, it is not a long walk between telling people that God is sending others to hell and deciding it's okay to send them there yourself. If we believe otherwise, we are fooling ourselves and creating a world full of sorrow and pain. Small seeds can grow into giant plants.

The honest truth is that none of us know for sure what happens on the other side of death. This is why it is called faith. But the Bible is clear, has always been clear, that judgment is reserved for God alone, and we are not to engage in it ourselves. And so, fellow Christians, we need to stop doing this. We need to stop planting seeds of judgment in our hearts and the hearts of others. Look what these seeds have grown into! Oh, what sorrow have we wrought for others?

I believe that God weeps for these people who were killed today when they came to worship, to pray. The people who were slain this morning seek to worship the God of Abraham; we too seek to worship the God of Abraham*. Muslims are not the enemy; we have this common goal of worship. We have differences in beliefs, yes, significant ones. But the fact remains that not only are we instructed not to judge, but we are told to love our neighbors.

I Corinthians 13 has been the gold standard within Christianity to explain the importance of love. I think we would do well to read this and meditate upon what it means to truly love our neighbors. We can refer to the story of the Good Samaritan. Let us protect and care for our neighbors, whoever they are and whatever they believe. Let us rip out by the root these evil plants that we have unwittingly grown, and pray that God has mercy on us to help us never to plant them again in the future.

*J has pointed out to me that the official Orthodox Christian view of whether we and those who follow Islam worship the same God differs from mine. Referring to I Corinthians 13, we understand that we "know in part," so I will say that I absolutely do not know what is exactly correct. But we do know that we are to abstain from judgment and to love our neighbors, so I'm going to do that and encourage others to do that. If we err, let it be on the side of love.

Tuesday, March 12, 2019

My Life is Not a Trampoline

Hello! As you can see, we are back to cat photos. But that's not my cat - that is my cuddliest client. I must say, if you have to work following a very stressful neighbor caring situation, while you are feeling under the weather, I highly recommend a situation in which someone warm and fluffy comes to sit on your lap and purr approvingly. This cat is so soft. He helped me feel better when I felt like absolute crap.

(In case you are concerned about me going to others' homes and leaving a dreadful virus behind, rest assured that the virus itself was along the lines of a common cold. A person who was not caring for an ailing neighbor with no resources may not even catch it at all, even sitting right next to me. I did wash my hands diligently and did not sneeze or cough directly on anyone's furnishings.)

It's been a week since I handed care of my neighbor back to the person it belongs to, and I am still trying to recover. I did not bounce back. This is partly due to the fact that I had seven days of cat care for two different clients lined up directly after the whole debacle, and one of those involved some early mornings, but mostly due to the fact that - news flash! - people are not naturally bouncy. No really. We can plyometric ourselves to death, but we still won't actually bounce.

It turns out I hate that term, bounce back. It makes it seem like it happens so easily and naturally, but in my experience as of late, there is nothing easy about it. It requires intention, planning, acceptance. It's that last bit I'm struggling with. One week out, and I am still tired all day, even with the help of my good friend coffee. There is no bounce. There is just steady, incredibly slow progress.

Before this happened, I was on a roll. I think this is why I am struggling so much with acceptance now - I had worked my way into a rhythm in which most things got done well in advance. For the homeschool meet up I facilitate, I was working a week in advance. We have that meet up again tomorrow, and I am not done with all the prep yet. And then there's my kitchen that I was keeping mostly clean - it is not, in fact, mostly clean. Or partly clean. It's "a tip," as they say here.

I know it will get better. I need a few days during which I have little of consequence to do, and that is coming this weekend.  For now though, just a few words in case you find yourself in this same situation. It's okay if you don't bounce back. It's okay if a hard thing, no matter how brief, makes things hard for a little while, or for a long while. You don't have to be a super hero. Rest. Let some things go. Pay attention to what your body wants. My body wanted a certain type of pastry, so I bought a package of them and hid them in my wardrobe so I would have to share. My body wanted to take the escalator, not the stairs. So that's what I did.

It's okay to do that, you know. In a culture that is obsessed with wellness and fitness, it's okay to  acknowledge that what will possibly make you most well is to listen to your own body. It's more than okay. (And I will certainly have more to say about that later.) It's good. Right now, my body is saying that it's still tired. It still needs more time, more rest, less stress. So I'm going to listen. And eventually, I will be back to my normal, no bouncing required.

Wednesday, March 6, 2019

All is Well, Because It Ended Well

I've switched from cat photos to photos of things I'm chopping in my kitchen. I hope you are not disappointed. I took this photo with the intention of using it for a very different kind of post, but I never got time to write it. Sometimes life gets tricky.

On Thursday I stood in my kitchen chopping chocolate, enjoying the quiet joy of working in the kitchen alone, thinking about the weekend ahead and the work that needed to be done to make it go smoothly and peacefully. It was our turn to host children's vespers, and I had lists made so that each thing would get done in turn, with the effort spread out from Thursday to Saturday. I smiled to myself with satisfaction. The weekend was going to be easy, thanks to my careful planning and the work I'd done in advance.



Best-laid plans and whatnot.

Earlier in the week, our neighbour's son had asked us to let people in to care for his mother while he was away on a business trip. She has dementia and struggles to open the door to people, so I said sure, no problem. We'd be around, and we were also planning on visiting her every day to make sure she was okay and cheer her up a bit anyway. Her son lives with her, but he travels for work a lot, and as her dementia has gotten worse, it has gotten more distressing for her when he goes. It felt like no big deal to commit to seeing her more often and coordinating our daily visits with the professionals that came for her care.

On Friday, she seemed quite unwell, so I notified her son, and a nurse visited and agreed that further action needed to be taken. I was told the GP would be in touch with me to let him in to examine her that evening, and then he would decide what course of action to take next. It was an extra visit to her house, which meant I needed to juggle errands a bit, but still, no big deal. Until the GP didn't show up.

I alerted her son, who left a message for her case manager. There was no response. What followed was 36 hours of her condition steadily worsening, with me as the only person who was there to attempt to assist her, while I was also dashing back to my house to prepare for and host children's vespers. It was unclear whether she was unwell enough to necessitate dialing 999 and sending her to the hospital. I wasn't comfortable making a medical decision for her, especially as she was expressing quite strongly that she did not want to go anywhere but to her bed.

What I remember about children's vespers is that everyone loved the barbecued pork, and I was very happy about this, because I had made the barbecue sauce myself but couldn't taste it because the stress of neighbor's situation was making my chronic heartburn flare up. Saturday, the day which was supposed to go off without a hitch thanks to my lists and planning ahead, was the worst day I'd had so far in 2019. I was in charge of a woman who likely had an infection in addition to her usual dementia struggles, and I had no idea how to get her the help she needed. I tucked her in as well as I could that night, then came home to my own bed and mostly did not sleep.

I got up on Sunday angry - that my neighbor had been let down, and that no one seemed to think it was important enough to follow up and get her the care she clearly needed. I ceased to care about the line I'd drawn to keep from invading her privacy too much, and I walked into her house determined to read every piece of medical paperwork I could find until I located a phone number to call to get help. If no one could help, then that would be my confirmation that dialing 999 was the right choice.

Providentially, a relative of hers who had seen her on Friday and knew she was unwell showed up shortly after I did. She took charge of the practicalities of clothes and bedding changes, and I started rifling through paperwork and dialing numbers that I found. Eventually, I was given the social care emergency number. The person I spoke to took my details and said someone would be in touch. I waited. Someone else called and said they'd see what they could do. I waited some more. I was promised help from a nurse. I waited for the nurse. At no point in time was I given a number to call if someone did not show up. If anything went awry, I would have to call the social care emergency line again and start the process over. I was caught between being responsible for someone's health and safety and having no real power to do much of anything about it.

Finally, I received a call that a nurse had been assigned to help with food and bathing Sunday night and Monday morning. Her care team would be back in the office on Monday morning, and her son promised to be on the phone with them first thing. From there it was all a blur of letting various people in, trying to get my neighbor to eat or drink something with nutritional value, texting her son, doing laundry, taking calls from various professionals who were back in the office, and getting supplies that were needed. The GP made a house call and diagnosed an infection, after which I was put in charge of making sure she took antibiotics. When pressed, the care team agreed to send a nurse to administer the medication and possibly help with clothing and bedding changes, but the nurse wasn't told what she had to do before she showed up. I was, in effect, the nurse's supervisor. Monday night, I tucked my neighbor in for one last night on her own and prayed that she would be okay until morning. She was. The nurse came again, meds went down the hatch, I could see that she was improving.

By the time her son came home yesterday afternoon, my neighbor was feeling well enough to be stand on her own and attempt to get dressed. The dire situation of the weekend was starting to fade. My work was done. I went home, feeling sick. There's nothing like extra stress to make one more susceptible to a virus. I laid down on my bed, exhausted and with a headache that seemed to encompass my whole body.

Today I have spent the day in bed. I had a cat job this evening, so I did that. There were a few things at home that couldn't be left undone, so I did those things. I've started to feel better. Rest helps, and so does peace of mind. I know that my neighbor is back in the hands of the people who can get her what she needs now and for the long term. I was there when she needed me, but I don't need to do anything else. I can go back to being her friend who visits twice a week to chat with her.

In the middle of the weekend, I felt angry. I wanted to blame someone for what happened, and I was upset to be thrown in the middle of it with few resources to get anything done. But looking back on it now, I see that I had what was necessary to help my neighbor. It wasn't ideal, and mistakes were indeed made, but we did okay. We survived! On the other side of this awful weekend, there is a sense of urgency for her care that didn't exist before, and ultimately, that is a good thing. I love my neighbor, and I am happy that she will get what she needs. I am happy, too, that I was there to give her what she needed when no one else was. It could have ended badly. It didn't. All is well.