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After 55 days, we brought Megan home from the hospital this week. One of my good friends told me that she prayed her stay at home would go well. Her choice of the phrase “her stay” struck me, as we don’t generally don’t say that about someone who’s at home. But while my friend is quite right in this case, her perspective–which she got from me–made me wonder if I’ve wrongfully colored everyone else’s view.

Our joy at our daughter coming home is muted, knowing that we’re not done with hospitals. She’s not sick enough to stay there, but she’s still very sick. We have a long discharge list of IV management and meds and lab work and danger signs to watch for and a weekly six hour round trip for chemo until January. Any flare up or infection will send her back to the hospital. And we learn this month if she requires a transplant, requiring another long hospital stay.

Still, we’re very grateful. Some patients with this monstrous disease spend many more months in the hospital before coming home. Some, tragically, don’t come home. This thing is deadly: it has a track record of cutting down healthy teenagers in just days. That our daughter has made it this far tells us that God is not done with her yet.

My struggle since I learned she’d be coming home has been striking the right balance between celebrating and managing expectations–hers as well as my own–that we will likely be going back. I’ve tried to be honest with her through this journey about what’s happening. She’s nearly an adult, and it’s happening to her; she deserves to know. And yet it’s hard. As parents, we always want to protect our kids. I’d love to let her have unbridled joy at being home, but it’s not fair to keep from her that we’re likely to go back.

But I also need to remember to enjoy this time and not be consumed by what may be coming next. We don’t just deserve this time, we need it. So we will eat dinner together as a family and spend time together and treasure each day together at home like the gift it is. And we will remind ourselves that home is wherever we are.

“Where thou art, that is home.” –Emily Dickinson


Refugees

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It’s peculiar living like a refugee, never in one place for more than a week or two at a time. In her seven weeks in the hospital, Megan has been in nine different rooms. Every so often, we load everything we own onto a borrowed cart, schlep it to the next room, and settle in yet again. My husband and I are alternating between home and the hospital, between semi-normal and altered realities; it can be jarring. A fellow parent called hospital living an invisible subculture, unknown and not understood except by us “privileged” few. We know we’ll be living with packed duffles in the trunks of our cars for the next year.

I’ve watched real refugees on the news with sympathy, torn from their homes by circumstances out of their control: natural disaster, violence, war. I’d always wondered how I would deal with the horror of having to suddenly leave everything familiar behind. Obviously our situation isn’t remotely the same as a real refugee’s, but it is unsettling enough. You learn what little you really need, and we don’t need most of the stuff we tell ourselves we do. I’ve been living in the same three changes of clothes for most of the last two months…I can keep them clean, and that’s all that matters. You learn what’s really important. Being together as a family, something that has only happened for maybe six hours out of the last eight weeks, is what I’m most looking forward to when this is all over. I realize how much I’ve taken that for granted.

This experience will forever change my perspective on a number of things, including what makes a family and a home and what’s normal and important. I believe those changes in perspective will be good, even if the experience is not. I know I will never again take for granted having us all home together. Home is wherever my loved ones are, wherever that is, because that is where my heart will be.

“Never make your home in a place. Make a home for yourself inside your head. You’ll find what you need to furnish it – memory, friends you can trust, love of learning and other such things. That way it will go with you wherever you go.” –Tad Williams


Bridges

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I was recently making the three hour drive to visit my daughter in the hospital where she remains gravely ill. It was a glorious summer morning driving through the beautiful Ozark Mountains. I’ve loved these mountains since camping in them as a kid. They’re not the majestic Rockies, of which I also have fond memories, but they have a peace and serenity to their beauty that just makes you feel this is the way life is supposed to be.

On this particular morning, the clouds were still resting among the tops of the mountains. The rising sun lit up their east sides a lush, summer green. Their twins on the west were allowed to sleep a little longer in semi-darkness; they would make up their extra snooze that evening, basking in the sunset. It was a scene of beauty which would normally make my heart soar. But this particular stretch of road has a thorn–bridges. Really high bridges, between the mountains. Exactly ten of them, I’ve counted. I don’t have a phobia of bridges, or even of heights, but I don’t really like them either. High bridges or bridges over large stretches of water are particularly troubling. I didn’t look forward to them this morning.

Entering the mountains and taking in their beauty, I braced myself for the bridges ahead. As I experienced the tug of war over these opposing emotions, I was suddenly struck how so obviously inseparable they were:  I could not experience the serenity of a drive through those beloved mountains without the burden of their bridges. I quickly made the connection between my journey over the bridges and the journey we’re on with our daughter. I have loved being her mother – she has brought us laughter, sunshine, and love. But the path we’re on with her now is dark and twisted, frightening beyond any fear I have ever known. Yet as stressful as living in a hospital is, never knowing what the next day or the next doctor’s visit will bring, my husband and I both long to be only there. We use the same word–privilege–to describe being by her side through this horrific ordeal that no child should have to endure. I already have emotional scars in just this first inning, but would be nowhere else. I have also experienced wondrous strength and faith and love, at a depth I hadn’t known possible. I have loved my daughter since I first laid eyes on her, yet I know I will be welded to her the rest of my days in a new way. It is wonderful and terrifying at the same time. I wouldn’t give that back.

On the drive home, in spite of darkness setting in, I did not count the bridges this time. Instead, as I passed over each one, I thanked God for them, as they allow me to experience the peaceful beauty of His mountains. I thanked Him for the trials which allow us to see His heights. And I had peace on my journey home.

“Fear keeps us focused on the past or worried about the future.  If we can acknowledge our fear, we can realize that right now we are ok.  Right now, today, we are still alive, and our bodies are working marvelously.  Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones.”  –Thich Nhat Hanh

 


You are here, in this room.

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This phrase has been giving me comfort recently; as I repeat it, I receive different gifts from it each time.

You are here, in this room.
You are God, Creator of everything, present everywhere at all times.

You are here, in this room.
You are here now. You have always been here. You will be here always.

You are here, in this room.
You love us and chose to have a relationship with us.

You are here, in this room.
You will live in us, if we will only allow you to. You will light a spark within us, from which we, in turn, can light others’.

You are here, in this room.
You are here because this is where I am, because You love me. I know You love me because Your word tells me so.

You are here, in this room.
Though You created the heavens, You are not just out there. Though we can see You in nature, You are not distant and abstract. You are always with us, where we live, because You love us.

“I have existed from all eternity and, behold, I am here; and I shall exist till the end of time, for my being has no end.” –Khalil Gibran


Faith

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I did one of the hardest things I’ve ever had to do in my life this week: I came home, leaving my critically ill daughter three hours away in the hospital in ICU. I left her in good hands–her father’s–but, still, it was agonizing to leave.

Earlier in the week, a month after we raced to the hospital in the dead of night with the clothes on our backs, I had realized that my time was up. I was empty. Every small thing was getting to me, and big ones were still happening, too. I knew it was best for everyone for me to leave, especially my daughter.

As the week wore on and swap day approached, I broke down every time I thought of leaving. That last night sitting in the hospital garden, bargaining with myself and with God, I realized why it was so hard for me to leave when I knew it was best for her: in the back of my mind, I’d promised myself I wouldn’t leave her until she had turned the corner. But she hadn’t. I was having to leave her sicker than when I had brought her that dark night so long ago. I had failed her as her mother and her protector. As I sat there in the garden, it dawned on me that maybe my job had never been to fix it, though that’s what parents always want to do. Maybe it had been my job all along just to be there. That I had done and done well. Now it was her dad’s turn to have the great privilege of being there for her. My job this round was done. I turned it over to God, who I realized had had it all along.

I hung in there pretty well on the three hour drive home, partly because her kid sister was in the car, and partly because I had some measure of peace that I had done the right thing. An hour away from home my husband called: Megan had been sitting up, alert and talking since I left, a marked change. She stayed up late that night as well and passed a major medical milestone the next morning. Her pain was finally going away. She was turning the corner, just as I was leaving her. I cried as hard as I have in this whole ordeal, this time for joy. I did meet my promise, after all, to stay with her until she got better…I just had to have the faith to let go before I could see it. I did truly leave her in the best hands – her Father’s.


Brave

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My daughter is simply the bravest person I have ever known. Her current health scare has only confirmed what I first saw in my earliest days with her; I have been in awe of her ever since.

I first met Megan Xiaomei (“Sh-ow-may”), now 15, when she was two. In an amazing 46 hour period, I went from the airport gate in Wichita, Kansas, to a dingy hotel room in remote northwest China, where the orphanage director had deposited my new toddler daughter and left. She didn’t cry. They had clearly prepared her as best they could, as she recognized me from photos we had sent them. She played happily with the toys we brought until bath time, when she finally broke down. We had been told to expect that, as Chinese children aren’t accustomed to immersion baths. She slept reasonably well that first night.

As I have watched her adjust to a new life, grow, and struggle with the challenges of childhood, I remain amazed at the quiet strength and resilience she displays. She has her own, unique view on the world…not distorted, but somehow protective of her strong sense of well-being. How I have wished for a piece of that for myself at times.

My daughter is thoughtful and kind, also traits we have seen since the day we met her. I have believed from the beginning that she has some special purpose here. I may never know what it is, but I am sure of it just the same. I only know that she has made me a better person for being her mother. As she has worked through this latest significant challenge, she has been the bravest of us all. I admire her in addition to loving her. My prayer to God in the middle of this is simply for the help and the strength to be the mother that this amazing person deserves; that is gift enough.

“We could never learn to be brave and patient, if there were only joy in the world.” –Helen Keller


How to choose joy

Kelly J. McCleary:

An important thing to remember is we choose our level of happiness.

Originally posted on Simply Faithful:

How to choose joyIt was a morning when I already had a case built against my husband.

There was a list at least three pages long of things he hadn’t done the way I wanted them – when I wanted them. Important things, like getting rid of that eyesore of an aquarium and taking millions of water bottles to the recycling bin.

So, I set off for work with this list running through my head and about the time I hit Lake Avenue I saw these three women out exercising. I probably wouldn’t have noticed them except that they were dancing as they walked.

I smiled and thought it was nice that someone was having a good morning. And then, I had the little thought: Maybe they’ve just decided to dance anyway.

I pushed the thought aside. I had a lot to figure out before I made it to work, and I was…

View original 251 more words


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