During our son's bone marrow transplant, we began referring to our family as "Team Winchell" to make meaningful to both of our sons the way our family would stick together, no matter the challenge. Team Winchell has grown to include their sister, who has Down syndrome. We continue, seven years post-transplant, to navigate this life of adoption, special needs, and medical crises, and to do it with our humor, spirituality, and sanity (mostly) intact.
Welcome to the Team Winchell blog!
Thursday, February 25, 2010
daily bread
I tossed and turned all through last night. Yesterday I received a job offer--to teach adult ESL part-time through a community program in Quincy--and all night, I kept worrying. Start on Monday? With what materials? With what activities? Who would watch Moriah? How would I fit 15 hours of teaching into Moriah's life, anyway? And more pressing...in the morning (that would be this morning), I had Down syndrome infant group followed by a 1:30 meeting at said agency in Quincy to sign paperwork, gather curricula materials...and I had no one to watch Moriah (despite calling nearly 10 people that night) and no one to pick up the boys from school.
The morning eventually came and by the time I got out of a bed, I was nearly in a panic. Those of you who have never had the experience of a panic attack will not be able to relate to this at all, but others of you will know exactly what I mean when I say my chest hurt, and I felt like I couldn't breathe real well, and I would have been pretty darn sure I was having a heart attack, except I know a pre-panic attack now when I feel one (and gone to the ER enough times for "undetermined chest pains" to know, too). I've had a few of them since Moriah's birth, starting with the night Moriah was born, and now and then they creep up on me again, a horrible and awful feeling. This morning I got the kids ready for school, made a few other desperate phone calls for a babysitter for Moriah, and began getting ready for my 1:30 meeting in Quincy.
So I'm doing the usual...buttoning my shirt, digging out dress shoes, making bottles, blow drying my hair. And the entire time, I keep feeling this pain in my chest, and I just keep talking to myself (out loud, and sometimes quietly), and then, mostly to God. "Give me today my daily bread" I kept repeating, over and over like a mantra. I need something. Something real, and actual, like bread. I need a babysitter. I need peace. I need the tight chest to go away. I need to feel like I can go back to work, because I really do want to, and in so many ways, need to. I need to feel like today can work out, so that I can trust that next week, when I start my job, will work out, too, and I'll have babysitters and dinner ready and my sanity, still intact, by week's end. Daily bread. Please. God. Bread?
By 10 o'clock, the tight chest was gone. I was feeling like it really was going to work out. Worst case scenario, I'd schlepp Moriah with me, sling and all. Or something. But it was going to work out. Daily bread, I kept telling myself. It's only 10. I'm not leaving until 12:45. There's plenty of time for what I need to be provided, when I need it (incidentally, the very meaning behind Moriah's name, and the reason we chose it that morning in the Recovery Room, because we had a profound sense we would experience with her many moments when we would be desperate to trust that God was really going to provide what we would need). Moriah, of course, was smiling away. She certainly wasn't worried. I tried to follow suit, setting out coffee and sugar and cream for my friends from the Down syndrome group (we visit together once a week now).
And here's what I really want to get on paper today: it happened. It really happened. In the middle of conversation, babysitting as a general topic came up, and before I knew it, the group had decided to put Moriah in their car, take her back to one of their houses with all of them, and stay together throughout the afternoon with all the babies and Moriah, all together. A play group, extended. Sans me. A provision. A support group extraordinaire.
This happened about 45 minutes before I had to leave. It was decided, and they began packing up all three babies with Down syndrome like the ultimate DS family (it really was touching) and off they went! And I looked at the clock and realized I had EXTRA time. Time to get in the car, get to Quincy, get a cup of tea, and think about my first ESL class on Monday. I wrote pages of ideas, wrote a list of questions for my meeting with my new boss...and looked oh-so-prepared for my meeting when it happened.
But there are a few subtler things that were just as cool as that big provision. First, my brother-in-law who delayed his own return home today (he teaches here in our town) to get my boys and hang out with them until I got home at 4. So cool. Then, on my way to Quincy I realized...it was raining. Not just rainy, but foggy and dark and pouring rain, and I swear, it was not raining at my house when I left, which might explain why I left without a raincoat. It might, except it's been raining all week. Not sure what I was thinking, but I thought, I hope I don't show up at this meeting looking soggy and obviously forgetful (who doesn't wear a raincoat on the third rainy day of the week?). I'm not saying this was God, or whether it was just dumb luck, but I sure was pscyhed when there was a break in the rain--it had STOPPED--for the few minutes it took me to walk from the parking lot to my tea, and then again from my tea to my meeting. And, another cool provision: the whole day, I had been worried sick. It's so hard, to be a mom and work for a single boss...always, I feel the tension (that lies mostly within me, I know) of wishing I could give more at work, that I'm not living up to expectations (mostly my own), wondering at this strange thing called motherhood, which I do at times resent for the many distractions it can pose to a working woman, let's be honest. And I do love to work. So anyway, I was so, so relieved not to walk into my new boss' office (who I had figured to be single and without kids, given the lack of ring on her finger) with Moriah slung on my hip. And then, what do you know, just before I was leaving the meeting, the new boss ends up telling me she just finished adopting a toddler from Ethiopia! So then I'm feeling sheepish, a truly hilarious and humbling moment. Worrying about not appearing too "mommy-ish" (read: interests divided) and finding out my new boss is a newer mommy than I am! A day come full circle. We ended up swapping funny adoption-adjustment stories and I left so happy that my personal life and my work life are not going to be at odds. Of course. Of course they're not. Provision.
So while we're on the topic, I'm going to be bold enough to ask for another provision tomorrow. Moriah is going in for her follow-up EEG tomorrow. She needs to be sleep deprived; I put her to bed late tonight and have to get her up a couple hours early (read: 4:30 am???) tomorrow and try hard not to let her have a morning nap...all so she'll sleep through her 12:30 EEG. Pray she sleeps. That would be tomorrow's provision--a successful test. I have my suspicions about her seizures (am not sure if what I've noticed this week are seizures, or a regression, or both), and we just need a good test that provides answers, and if needed, more treatment.
I can't look farther ahead than that. Moriah might have a seizure disorder flaring up again, but all I can do is ask for tomorrow's needs. "Each day has enough trouble of its own." You know who said that? Jesus. And that cracks me up. Because it's so awfully true, and maybe one of the wisest things he said.
So...off to bed, an EEG appointment...and, this weekend, a Lenten/birthday retreat with a dear friend. I trust I will encounter God in the spaces of time in these coming days, and have more room and words with which to thank him for these Moriah-days, these given-when-needed moments. Daily bread goes stale when it's not requested new each day.
Monday, February 22, 2010
Happy Birthday, Grammy Mepp!
Moriah and I made this video for you, since we were unable to come and see you today (I am so sorry and so sad!). My memory card filled up and the video cut off at the end, but it's a cute one! Happy birthday tomorrow!
Thursday, February 18, 2010
Ash Wednesday
I was running late to Moriah's neurology appointment, so rushed there first. Only to discover that what I thought I was there for (an EEG of her brain) actually needs to be scheduled as a two-hour outpatient visit...at another time, of course. I'm not really sure why I met with the doctors yesterday, except to tell them the ACTH was done, that I haven't seen any seizures in three weeks, and to recall (for the upteenth time) Moriah's course of seizure activity. Oh, and for them to tell me that Moriah's left side responds differently than her right (something we've known about Moriah from her first weeks, but...ugh), which could be a result of a lack of oxygen when she had her heart defect (ugh), but could also bring back her seizures at a later date (I didn't even ask why, I was working so hard just not think about that). Basically, the long and short of the appointment was a bunch of warnings to keep a "close eye" on Moriah for seizure activity (even something as slight as rapid blinking), a hope that Moriah will be within the "eight-five percent" of "kids with Down's" whose seizures resolve, a reminder that she could possibly be within the "unlucky fifteen percent," and a lack of conclusion until after the EEG, as the neurologists couldn't "really tell anything" until after they saw the test. Of course, by the time I got out of the appointment, it was after five, and the EEG scheduling office was...you guessed it...closed. I left the neurology clinic (which takes up an entire floor in the Fegan building, and was a very sad place, let me tell you, the waiting room crammed full of kids with some serious neurological issues) very overwhelmed and beginning to feel very defeated.
So I did what any sane person in my situation would do...stopped in at CVS for a Diet Dr. Pepper and a bag of gumdrops, which I consumed during the (stop-and-go rush hour) ride home.
But I also did something a bit more helpful, though, I must say, only after I had bought the Dr. Pepper. I remembered the Ash Wednesday sign on my way out of CVS and went back upstairs, back to the interfaith chapel. Walking through the halls made me incredibly sad...realizing how I don't need to read signs in that hospital anymore, walking past the phone booth where I had a hysterical meltdown during Orilus' transplant days, past the Family Center where I met with our lactation consultant after Moriah's birth, past the garden where Orilus took his first tentative steps outdoors after weeks of transplant isolation. So many sad, painful memories there. But I kept walking, and opened the door of the chapel quietly.
There, on the floor near the door, was a Muslim woman on her prayer mat, facing Mecca (the location of which is marked in the chapel) and in prayer. Her diaper bag was beside her, and she looked up and smiled at me as I wheeled in Moriah's stroller and parked it near the door. I made my way to the altar and marked myself with ash. This, you understand, is actually not part of my upbringing. I was brought up in a "low church" tradition--the hand-clapping, arm-raising, drum-beating, guitar-playing rhythms of worship that pride themselves on being "new" and "untraditional" even as they seek mostly to recapture the passion for an anient, traditional faith. So it's little wonder that the "high church" traditions--the church calendar, for one, and traditions like ash and Lent--hold great attraction and meaning for me, even as I continue to love low church worship freedoms.
So I marked myself with ash and knelt to pray for a few quiet moments, as long as I could until Moriah began to stir. I thought of Jesus, and the cross, and my thought for the day, which was exactly this: The sadness and loss and fear are too great for my heart to contain. And I thought of all the emotion we see in Jesus through the biblical narrative, a way of showing that God can contain more emotion, can absorb and welcome and encompass more emotion, than I certainly can. And I thought of ash, and of returning to ash at the end of my life, and most upsetting, of Moriah returning to ash someday, and how that may happen sooner than I might like, given the shorter life spans of kids with Down syndrome. And I felt very, very overwhelmingly sad, and thought of Jesus, and His death, and the pain of that for him, and for his Father, and I figured in my prayer that God's heart could contain my emotion, and asked Him to do just that, since having a panic attack or getting depressed again was more than I could do. And then Moriah began to stir, so I wiped my tears and scooted around the lovely mom on her prayer mat towards Moriah's stroller.
And this is the last thought I had when I left the chapel: the solidarity I shared with that mother. Here we were, in worship and in prayer, seeking out meaning in lives that have both been obviously touched by pain and sickness. We both were carrying bags full of kids' stuff...bags we put down to pray, maybe in the way we were hoping to leave some burdens and emotion there, in the chapel, and to leave a bit freer than we had come. I pushed Moriah's cart around to leave the chapel, and the mother interrupted her prayers, stood, and held the door for me. "Thank you," I said, "bless you." And I left, feeling like we understood one another, understood that mothers most often pray while pushing strollers and holding doors and changing diapers and such. And that we pray because we must, because we are desperate to have God touch our children, and also, to make us strong enough to watch them suffer this life.
There are so many things I don't know. I don't know (in answer to your question, Tracy) how it is that ACTH could take away Moriah's seizures forever. I don't know if they will come back, tomorrow, or in a year, or later. I don't know how I didn't know that yesterday was Ash Wednesday, when usually I care very deeply about the passing of time. I don't yet know how I will observe Lent, which I like to do every year, even though those in my church tradition do not. Usually we are supposed to "give up" something. In the past, I've given up candy (which, obviously, is not going to happen this year) and things more serious and meaningful, too (though, if you know me, you know that giving up candy really is a big business). This year, I'm thinking that I need to give up. That I need to to somehow find a way to surrender more profoundly...to this new suburban life, to Moriah's diagnoses, to the career I miss and the life I used to lead. And, mostly, to a new trust that however painful this life can be, God's heart can be trusted, trusted for its bigness to hold all this life will bring me, all the losses we've endured, all the new and beautiful and awful things ahead. How to make that surrendered journey in these forty days, to make it intentional and actual and genuine, these are the things I do not yet know.
I'm not sure how you spent your Ash Wednesday. In retrospect, if there is any light about such things, I'm glad I spent mine surrounded by suffering children. This, after all, is the meaning of Lent, that Jesus can meet us in our suffering, not just as a higher-than-all-else king, but also, as a co-sufferer, an empathizer, and a great comforter.
Tuesday, February 16, 2010
we're home!
We are loving our new house. It's the perfect size for us...the boys have the entire second floor, which consists of their two bedrooms and a crawl space for storage. It's the first time they've had their own rooms, and they are LOVING it. Despite some initial issues with some new systems here (a gas leak outside, some electrical snafus), we are so grateful to be in a warm, sunny, happy house. We spent the day yesterday re-arranging furniture and unpacking more boxes...our living room is now box-free, as are the boys' rooms and kitchen (thanks, Mom, for ALL your help with that!). And we even had time for a Valentine's Day dinner this weekend with Jason's parents (their 41st anniversary) and his two brothers and their wives. A wonderful, hilarious, poignant evening out for all of us.
So we are moving forward. Life feels like it's starting again, and we'll spend these couple weeks settling in, even as we wait for our basement to be remodelled so that we can move our bed out of our living room :) and into our basement bedroom. We're also putting a family room in the basement, too, and in a few weeks, the finishing of that space will finally give us in-house storage and places to put all the stuff still in the garage and in a small storage unit. And today marked another important event--Moriah's final injection of ACTH. I've given all the injections now for weeks (I think something like 28 injections total) and I almost cried this morning as I put the final needle into our sharps container. Tomorrow, we check in with neurology and hope for a good report...what we don't understand is whether three weeks of no seizures means that Moriah is "in the clear," and how likely it is that her seizures would (or wouldn't) return. We're just praying they don't. I can't wait to bring our equipment to the hospital tomorrow, pass it off the neurology team, and bid the injections farewell.
The boys are upstairs playing (or maybe dancing...I can hear lots of thumps on the ceiling above me) and Moriah is taking her morning catnap. I'm off to put away a few more things in her room this morning, to take some laundry out of the dryer, to figure out what I'm feeding hungry boys for lunch, to help the boys to call some friends to come over tomorrow (it's school vacation week here). And then...to rest. To enjoy the falling snow. And to cherish the feeling of family-come-home.
Friday, February 5, 2010
Moriah LIVE
Two new videos I just took of Moriah tonight. One is of her moving and laughing...I love her new laugh, it sounds like a cough and just cracks me up. The other is of her rolling...I caught it on film. She's rolling frequently and easily now, and (as you can see) is doing really well at holding up her head while on her belly.
You'll notice Moriah looks really big in these videos. The steroids have caused her to gain some weight and have inflated her face--she has "steroid cheeks," as we call them. It's not your imagination if she seems much bigger than before (she's well over 18 pounds now). You may still be able to see some of her head-marks healing from the brain leads, and the scratches on her nose are her typical my-nose-is-no-match-for-my-grip scratches. We, though, are admiring the new hair bow that arrived in the mail for her this week (thanks, Jill!). And loving her smile, of course. Now that she's started her steroid wean, she's begun sleeping more and smiling more in the last 24 hours. We're so happy to see her return, bit by bit. And so far, we've seen no seizures...we continue to pray they'll stay at bay and she can be both steroid- and seizure-free.
Thursday, February 4, 2010
new house tomorrow
We moved to West Bridgewater over Thanksgiving believing we were only three weeks away from signing on a (different) house. Our in-laws graciously allowed us to move in...as long as we were only staying "a few weeks." I think they were cautiously worried and optimistic about whether a family of five could live with their family of three without causing some serious conflict.
Nearly three months later, we have lived. Without too much conflict. Still in love with each other, after all. And for the umpteenth time in the last week, Dad Winchell keeps asking us to stay. And he's pretty serious about it.
But we are moving on. We need our space, our stuff (I'm really getting tired of the few outfits I packed for our supposed three-week stay!), and mostly, our own routine and rhythm to life. I think we'll always remember these three months, though, with a lot of fondness--it has been a poignant time for us, and honestly, I'm pretty sure I would have been MUCH more depressed/overwhelmed/frustrated/stressed had we lived on our own from the start. My in-laws' help, laughter, morning breakfasts, willingness to hold Moriah...these have been saving graces.
Yesterday was one of those days. I simply wiped out. Left to get the boys from school and couldn't make it up the street in the minivan, I was that exhausted and overwhelmed. Thankfully, my mom-in-law stepped in until Jason could get home, picking up the boys, getting them a snack, and keeping Moriah happy...and I slept. For the entire afternoon. Into the evening. And all night. Yesterday, I was really glad we were living here, and I wasn't alone.
But the time is coming, and we are excited. Our new house is not the house we were going to buy three months ago...it's smaller, and brighter, and newer, and better for us. A wiser financial choice, and completely redone, even though we've had to wait longer than we thought.
Tomorrow it will be ours. We'll do some moving-in this week (hanging blinds and that sort of thing), but we're saving our big "moving day" for a week from Saturday, the start of the school vacation. And we're definitely looking for help, if you're available and can lend us some strong arms.
This has seriously been one of the hardest week of my life, made exhausting by Moriah's steroid-crazed inability to sleep and moodiness. So appropriate that it's ending with good news, and the opportunity to keep moving forward. The end of a long period of waiting, and a new start. We're praying for the energy to begin again and to walk our children through yet another transition. Thank you, friends, for praying with us.