a December 22nd video

And here she is, on her changing table!

December already!

We really are alive here in West Bridgewater. I'm starting to get panicked emails. Somehow, our two-and-a-half weeks here have slipped by and trying to find moments for emails, phone calls, Facebook, or the blog is like trying to catch water in my fingers. December already. I can't believe it.

Yesterday was Moriah's five month birthday. We celebrated by...putting her in the nursery for the first time at church. :) She actually stayed there for quite a while (over two hours) before she had a major meltdown and the nursery had to page me (for all of my non-church-going friends, they actually have a black LED screen at the front of the church that flashes Moriah's assigned number on it if they need me...sort of like a deli counter system...of course, I'm not used to watching that screen, so totally missed it and my sister-in-law had to get my attention from the end of our row and say, "Isn't that Moriah's number?" at which point I went running out of the service like a properly guilty mother). Apparently she was just overstimulated (she's the only baby in a nursery of toddlers, who are quite loud). So, I made it through our first Sunday School class (an interesting class on parenting) but caught only 10 minutes of service. Ah, five months old. It does, though, have its many, many joys, including a ton of smiles, lots of grabbing (have lost my glasses to her fists a few times), attempts to sit up in her Bumbo seat, and constant babbling.

Orilus and Jackson are living quite the full and happy lives here in West Bridgewater. They both walked and biked to school again this morning; we're really enjoying the outdoor spaces here and the freedom to allow the kids to roam a bit farther and more freely. Jackson's basketball season is in full swing and he's been called the best point guard in his league; he's really proud of the niche he's already carved out for himself on his team and on the court at recess at school. Orilus' season hasn't started yet; we're hoping it begins this week. But he's been busy attending junior high youth group at our church, and is enjoying the pizza, the games, and (sigh) the girls. We're sending him for his first-ever overnight in January--to Mt. Monadnock youth retreat. Okay, sisters and Chapel friends, let's hear a shout for our MM retreats! Can you believe I now have a son old enough to do what we did just...yesterday? last year? Oh, and both boys have decided to join the band at school. They have a choice at school--they can either take music, chorus, or band, and they've both decided to join band and (after mom put her foot down) to choose different instruments from one another. So...(drum roll please)...Jackson is now the proud renter of a snare drum (let me tell you, Jason's parents are being better than great about us living here), and Orilus is now learning to play the alto sax (Dad, are you way too excited?!). They started last week. The percussion kids (all 4 of them) have a weekly class together, and Jackson came home already playing quite a bit. And the sax kids (all 3 of them) have class together, too, and Orilus can already play 3 notes! He's quite proud of himself. The funniest, of course, is when they "jam" together in the "dirty side" of the basement here at Mom and Dad's...three notes over and over on the sax, maybe two or three different drum rolls...over and over...

So we are still living here at the Winchells. Our house on Henry Ave is hopefully closing on Friday of this week...you can pray that this happens, as we have an offer in on a different house in West Bridgewater and in order to sign a P&S on Monday (one week from today) we need our Henry Ave place to close. After much angst, we decided to let go of the house we were interested in purchasing originally...it was so big, and so expensive, and we were having a lot of trouble getting the people to agree on the septic issues. We let it go...and a new house came on the market, a house that's been totally re-done, is smaller, and a lot less money. We feel so much happier about this fitting into our budget and our lives and our values and we are so, so hoping we can move into it in January.

As usual, time here is short...Moriah is waking again and I've got to run. Breakfast with Mom, Dad, and Great-Grammie is on the table, and I do need my morning cup of coffee. Know that we are well here, adjusting and making our new life work as best we can. We are so grateful for all your posts, comments, emails, and calls...we really will be in touch, and try to get settled so we can see some of our friends soon!

Love from a West Bridgewater Team Winchell

new home

We've made it to West Bridgewater!

In the early hours of Wednesday morning, I packed the boys and Moriah into our little car and drove through Boston to our new home--my in-laws house in West Bridgewater. The boys and I had a lovely tour of their new school (so amazed by the resources available there, and the kindness of the principal and staff). Even the boys liked the place, which is saying a lot. :) Then, as promised, I took the boys shoe shopping. Both of them have been saving for new sneakers and the sale of their parakeets gave them enough money to get the shoes they wanted (the rule at our house: we buy the "necessary" shoes, and if they want to spend $80 on a pair of name-brand sneakers, that's their business, and their money). Orilus ended up with a sweet pair of Nikes, and Jackson with a crazy pair of Jordans...the thrilling part being we learned a new way to lace their shoes (two colors, with one color on each side). Thrilling, that is, if you are 12 or 13. If you're a 33-year-old mother with a sore back, you're just looking for a place in the mall to sit. Somehow, I think these shoes represent for the boys their readiness to start at their new school on Monday...they have refused to wear them all weekend an d keep talking about how cool they're going to look.

Sooo...after going to FIVE shoe stores, and three of them three times EACH, we went back with shoes in hand to the Winchells, and waited for Jason to arrive with a van-load of stuff so we could officially "move in" to the in-laws. He did arrive, about 5:00 pm, and we spent the next hour and a half unloading, unpacking clothes, setting up beds, and trying not to complain about who had the more exhausting day--me, running around with two shoe-crazed boys, or Jason, who tried to keep classrooms of teenagers under wraps the day before a holiday and then spent a couple hours loading up our stuff. Still not sure on that one. Afterwards, we had a birthday dinner (I think I was awake for that part). It was my birthday on Wednesday, and a truly strange way to spend the day, though I must say, it was hilarious...I've been enjoying the boys so much in the last weeks (I swear, they get funnier the older they get). And they began the day with some really poignant birthday cards (Orilus wrote: "Always remember you'll always be my mom in my heart," and Jackson wrote: "Moms rock," and I think both pretty much mean the same thing, if you ask me).

Thursday was Thanksgiving. We took a long walk in the morning, with Jason showing the boys the through-the-woods shortcut to their new school (they can walk or ride their bikes, as we are close enough that they are not within the bus zone). We called family, ate some dinner, hung out with family here (and my dear friend Val, who joined us...so good to see a Lynn-er in West Bridgewater!).

Yesterday was a yucky, rainy, day-after-holiday, we're-tired-and-grumpy day. Suffice it to say, we survived, and somehow, our children lived to see today (but barely).

Today we were up early again and headed back to Lynn for the final "moving out" of our house. Thank you to our friends who were able to come by to help or to say good-bye; it did my heart so much good to see you. When our house was all cleaned out, Jason and I just stood there and hugged and I cried. We've been married 12-1/2 years, 11-1/2 of them spent in Lynn, and today marked the closing of a major chapter of our lives, really, the only chapter of our lives that we've known. As we walked out our kitchen door, Jason noticed something we nearly forgot--an iron cut-out that reads, "Numbers 6:24," a blessing from the Torah, which reads: "The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face to you and give you peace." We took it down, the very last thing we took from our house, and from our life in Lynn. For me, a symbol of a radical trust that no matter what comes next, we will find grace and experience again that it is Love that ultimately keeps us.

moving day has changed

Hey friends! In an attempt to avoid the rain, we've moved our "final move-out" to Saturday. We're not yet sure of the time (waiting on a return call from U-Haul), but we hope it will be in the morning. Would love extra hands and hugs! Happy Thanksgiving to all from the Winchells

lasts

After my last post (the response to which has been so overwhelming and heartfelt...thank you, friends), I realized the paradox of so many "firsts" while we are also experiencing so many "lasts."

Yesterday morning, awake at 4 am to feed Moriah and unable to return to sleep, I eventually snuck out of a sleep-filled house with our dog Kobe to Lynn Woods just as the sun was beginning to rise. Our last walk there. Jason and I have had so many countless walks in that place--with our first puppy, Jake; before children and after; with a baby carrier and with dog treats. I will miss the woods and its quiet solitude and opportunities for re-connection.

Yesterday afternoon, our last walk on Lynn Beach. Jason and I were able to steal away for a couple hours sans boys (thanks, Chris and Christy!) for a final walk on the boardwalk. We lived in our house near the beach for eight years, and discussed everything from founding our non-profit, to adopting the boys we had just met in Haiti, to whether to choose a bone marrow transplant for our son, to living more intentionally in our relationships with God and one another and our city. And so many friends we've walked with on that beach! Eleven years of friends and long walks, laughter and tears, conversation and walking prayer. One of my favorite beach memories will always be the 5K my sister, my best friend, Orilus and I ran together after his transplant was over. The miracle of Orilus' new life was palpable, energizing, and a love-force that is difficult to describe. I know that blog post is here somewhere (September of 2007, just two years ago, really?!).

Our last pastry at D'Amicci's (just around the corner from our first apartment in Lynn, where we lived for free in exchange for managing the propety, which was mostly about vaccumming the halls and getting yelled at by disgruntled tenants...those days as college student and youth pastor seem so far away now). Our last trip to Kane's Donuts. A final burrito al pastor at Mexico Lindo. Last pancake at Brother's Deli. Last roast beef at John's (I guess it's no wonder I weigh more now than I did at our wedding twelve and a half years ago!).

And tomorrow night, our last night in Lynn, which we'll celebrate (where else?) at my dear friend's Chinese restaurant on the Lynn-Swampscott line. How many hours I've spent at Yan's Bistro and with Karen and her family! How many New Year's Eves spent delivering food with them!

I know we'll be back to Lynn to visit friends, and re-visit many of these places again. Sometimes, I understand we are moving, and other times, I do not at all and feel there is really no way to bring to a close eleven years of hopes and dreams for a city, a love for friends and neighbors and colleagues and teenagers we've met and worked with, and a passing of time that has brought us more surprises (and more trips to Boston hospitals!) than we could have ever imagined.

Our last Monday in Lynn today, friends. Wednesday morning, I'll load the kids into the car and drive to West Bridgewater. We'll return on Friday to load our truck for one last time...do come by to say good-byes that morning if you are around. Last hugs (one of my favorite things in the whole world) will abound!

So thankful this week that the burden of so many lasts is lightened by the joys of so many firsts as this season of our life gives way to another. Happy day of thanks to you all, with thanks for all the ways you've loved us well.

firsts

This morning as I was dressing Moriah I realized we've had a lot of "firsts" in the last week.

Yesterday, the first time Moriah has ever peed in her bathwater. I laughed.

This week, the first time Moriah has worn clothing in size 3-6 months.

Last Wednesday, the first time we have had an adult with Down syndrome in our home. Thank you to our friend, Brian, for bringing his friend to meet us. We so enjoyed the man's company and were touched by his words of encouragement to our family and his inspiring life of faith.

On Sunday, the first time I have met with a group of mothers who have children with Down syndrome. They invited me out to a "mom's night out" at a nearby Mexican restaurant, and we stayed until the restaurant kicked us all out. I heard some stories that were difficult to hear, but mostly I witnessed a lot of gratitude, a wicked (and sometimes laughably dark) sense of humor, and a unspoken belief that normal, everyday moms can be moms of special needs kids. That we are no angels, just moms working out love in our lives and in the lives of our children.

And a difficult "first." Yesterday, the first time a stranger has acknowledged that Moriah has Down syndrome. I should have seen it coming. At the mom's night out on Sunday, one of the moms got to laughing about how when her child was a baby, she thought others couldn't tell he had Down syndrome, but now, when she looks back at his photos from that time, she sees how obvious it was. I was taken aback by her story, because, frankly, sometimes I don't see Down syndrome in Moriah, and wonder whether others can "tell" or not. I wonder almost every time we are out in public. Maybe this is part of the "coming to terms" with the diagnosis, I don't know. But sure enough, yesterday we were at the grocery store and a middle aged woman rushes up to me in the cookie aisle (I was hunting for vanilla wafers, which are a craving I haven't shaken since the last months of my pregnancy). She must have seen us in an earlier aisle, but I didn't remember her and at first was a bit sketched out at her close proximity to Moriah and me. "She is beautiful," the woman said. So many people tell me that (and always, I wonder--are they saying it because she is beautiful and looks "typical" and beautiful, because she is beautiful as a child with Down syndrome, or because they suddenly realize Moriah has Down syndrome but figure they better say something nice anyway?), and I offered my usual, "Thank you so much. We think so." Suddenly, she leans over, kisses Moriah's foot, makes the sign of the cross, mumbles what I hope was a blessing in Russian, puts her hand on my arm, looks into my eyes and says, "I used to work with children like her. She is a special gift. May God bless you." Of course, I handled it in stride, smiling in a grateful-sort-of-way and offering again my thanks and returning her blessing. But let me tell you, I took my cart and those vanilla wafers, walked to the next aisle, and thought, "I could really cry right now." I didn't, but I really could have, and was relieved to be checking out a few minutes later with the woman nowhere in sight. But then, the woman checking me out kept looking at Moriah, began to say something, and then said nothing, and I realized again that people can tell, that Moriah really is a child with Down syndrome and it's no secret.

As I was pushing the cart out of the store, Moriah asleep in her baby seat, I was still dealing with some sort of shock. Shock that I thought otherwise, that people couldn't see what was so obvious. At the same time, shock that it was, after all, so obvious. Who would Moriah be, I wondered? Moriah, or always, the baby or girl or woman with Down syndrome?

And because my life has been full of ironies in the last couple months--some painful, and others so nearly miraculous that they make me laugh--as I was leaving the grocery store, a mother and her daughter were walking in. They were talking and laughing as they made their way inside, the mom's hand on her teenage daughter's back. As the teenage girl pulled off her hat and looked up at me just as I got to the exit, I realized with a sudden start that she had Down syndrome. I waited until I was outside, near the Salvation Army bell-ringer, and laughed out loud. Sometimes, just when I begin to worry that maybe my daughter is going to be alone in the world, feeling isolated and like she is the only one...sometimes, when I'm in public and see typical baby-toddler-kids with typical moms (and oh, how the moms with crowds of non-special needs kids gathered around them give me pause sometimes, so unaware that to me they are shining with lucky fate, to birth so many with so much health) and begin to feel that I am alone, singled out (by something random or divinely appointed I feel I will never be sure)...sometimes, I am offered a reminder that we are not alone, Moriah and me. That we can aspire to be a child with special needs and her mom, walking into a grocery store on a chilly day, pulling off our hats and sharing an inside joke together. No less and no more meaningful than any other child and her mother, but somehow, more hard-won.

Winchell family update

The days are flying by so quickly! And yet, for the first time since Moriah's birth, I feel that the time is actually comprehensible to me. When she was a month old, I thought, "only a month?!" At two months, "only two?!" Too much had happened, and I couldn't figure out how it all had happened in such a short amount of time. Tomorrow Moriah will be four months old (from July 13 to November 13) and I finally feel like her age makes sense, that I can understand how all of the life we've lived since July might actually "fit" into four months.

Moriah is now 12 pounds, 10 ounces and an absolute delight (well, except when she's crying for food or a nap). She continues to sleep all the way through the night, and rolled all the way over (even better than on the video I posted) earlier this week. She is a TALKER; those who visit us (Early Intervention, the nurse) continue to be amazed at how verbal she is. She babbles a lot of the day, taking turns with me or whoever will talk with her. She makes all kinds of sounds, sometimes with a quite serious face, and other times, with a wide-mouthed grin that makes me laugh out loud every time. She is strong--holding up her head more and more now, gripping onto things so tightly, reaching for toys and faces, following movements across the room, kicking her feet, scooting around in circles on her back, rolling and stretching. She is, as I like to tell her, a "busy girl."

So what is going on with us these days? So much, friends. It has been a whirlwind four months; though I conceive of the time, I cannot yet understand how so much has changed and so quickly. I think Jason and I begin many conversations these days with, "how did we get here?" But here we are, and I am truly proud of the way we are sticking together and forging a new life for our family, trying to move forward as best we can.

Our house here in Lynn is under agreement; we signed the P&S last week. We're hoping to close on December 4th. Last Friday, our offer on a house in West Bridgewater was (finally) accepted; on Sunday, we did the house inspection and were pleased with the results. The boys were finally able that day to walk through the house and they loved it--they chose their bedrooms (for the first time, they will have their own rooms, which may or may not cut down on the amount of times they throw each other into walls, tackle each other, and trip each other...). Simply put, we LOVE that house. Here's the hitch: the couple who is selling it is divorcing, and talking with each other only through their attorneys. It's a mess. Currently, we're held up on signing a P&S because they are trying to figure out a closing date and a Title V certificate. I'm not sure if they're fighting about it or what, but it's prolonging our process and making us a bit anxious about if/when the house will finally be ours. It's also making us sad, that the house has become a place of great heartache for a family; we are praying often that our family life there will be marked by more peace, even as we pray for them to have the strength they need to move on.

In the meantime, we are making plans to move out. We'll be living in Jason's parent's house in West Bridgewater until we purchase a home; they are extremely kind to take in a family of five, especially right before the busyness of the holidays. Last Saturday Jason loaded up the first U-Haul of things and made a trip to our rented storage unit in West Bridgewater. He'll do the same again this Saturday (beginning at 8:30 am, if anyone is around and wants to help load it up). In this trip, I'm hoping to have packed up all the non-essentials so that the final move (scheduled for Friday, November 27th, the day after Thanksgiving) will be mostly furniture and "last things" only. So far, we've packed up Moriah's room, our office, our living room, our dining room, our kitchen, our attic, the garage, and the boys room--by Saturday, I've got some more boxes to fill from our room and the bathroom, and then we'll wait for the final moving day.

I think our biggest concerns now are helping the boys to transition and eventually finding work closer to West Bridgewater, so that we are not commuting to Lynn forever. We're working at both those things. The boys' final day of school in Lynn will be the Tuesday before Thanksgiving; the following day, they'll tour their new school and begin attending there the Monday after Thanksgiving. Please continue to pray for them. It seems that as soon as we decided to put the house on the market, plans begin to push us forward...and here we are, two weeks away from leaving a city we've loved, and friends, and expectations, and dreams... For the boys, especially, this is no easy task.

We are trusting all will come together in due time. My good friend reminded me of what she's always called Jason's "step into the air and you'll feel solid ground" philosophy. We do feel that way--that we are stepping forward, and trusting for the next step, because we cannot see very far ahead at all. And in the meantime, we are enjoying time together as a family, playing nightly Solitaire games, reading aloud to Moriah, and walking Lynn Woods. "Play, and pray." It's what we're trying to do right now. Well, and pack a box or two more...

Moriah's new trick!

end of recovery

Today is an important date...exactly six weeks since Moriah's open heart surgery, which means we have reached the official end of her post-op recovery! No more precautions--she can be on her belly now, and we can pick her up under her arms again. I am so proud of my little girl.

This morning I'm sorting through Moriah's drawers, packing and deciding what we're bringing with us to the Winchells and what is going to storage. I first dressed Moriah in a NICU; her gowns from those long days all bear her initials "MW," and I remember writing her initials there and realizing for the first time that we would bear the same ones. There are the snap-up T-shirts from her days after her open heart surgery; they were easiest to get on and off of her when her chest was so sore and tender. I will always associate these outfits with particular rooms in particular hospitals, with particular nurses and rocking chairs and parent beds. Sometimes, when I think back to those days, I am nearly breathless with how painful they were, and I'm not sure how we got through them.

But we did. And so this morning I'll pack the reminders away, and choose again to begin a new day, to savor this moment--Moriah napping, my hot mug of pumpkin coffee beside me--and to fill the next box. More than ever before, I'm aware what a daring and audacious choice this is, to begin again, to welcome future and not shrink back. Grace that both moors, and propels.

walking in Lynn Woods

Yesterday the kids and I hiked Lynn Woods; here's some photos from our walk.

GI, WB, and...

So, our GI appoitnment went well on Friday. For the first time since birth, Moriah did NOT have microscopic blood in her stool, which means she is finally NOT allergic to her formula (this, after four switches in the last four months...she's now been on EleCare since just before surgery and is doing great). Yay! So no more switching for us. She does, however, continue to have reflux, and has been started on Prilosec. She's eating a lot this last week, and must be going through a growth spurt...a huge relief, as a week ago she was eating so little and the nurse was concerned about her sub-par weight gain. This week, she'll probably weigh in over 12 pounds; she's often taking 8 ounces in a sitting now!

WB...West Bridgewater. The sellers have begun counter-offering, and we're going to counter again...it's exciting to be in talks, finally, and to feel like we might have a wonderful home for our family and our kids, so close to mom and dad's. Pray it all comes together, and we can close quickly!

We spent the weekend packing up our garagefor the first of many trips to the South Shore this coming weekend...this Saturday, Jason's going to bring the first U-Haul load of stuff to our storage unit there. We got the yard cleaned up, too, went to church with the Winchells, and spent the afternoon at their house figuring out how our family of five is going to fit into their home. They're kind enough to give us every square inch they can, and we're grateful for a place to stay for a month or so while we close on a house of our own. In 12 years of marriage, we've never needed to "move back home." It's pretty funny, rather humbling, and will make for a FULL and fun holiday season.

appointments

Our life has been full of appointments this week.

Two trips to Children's Hospital this week--one to genetics, one to opthamology. We went to see a geneticist to find out what kind of Down syndrome Moriah has (there's a fun fact for you that you probably didn't know: there's more than one type, and more than one way DS is created, and it's not always hereditary). In the end, I was glad for the information (it's not hereditary in our case), but it really doesn't make a difference, as no geneticist of any other kind of doctor for that matter can tell us exactly what Moriah's course of life will be. I will say it was enormously frustrating to be asked questions like, "How far did you make it in school? Do you have any history of mental retardation?" and so on. Frustrating because I shouldn't be embarrassed to be asked such questions, but felt a need to defend myself, which only shows how much of my pride and life still hinges on a narrowly defined view of "intelligence." Afterwards, I thought I should have answered with something smart-aleck-y, like "Well, I really enjoyed fourth grade until I dropped out." :) In opthamology, we learned that Moriah does not need glasses (yet), but will if her shifting eyes don't self-correct, and if she continues to cross her eyes now and then. We go back in six months. My favorite part of that visit was when the Harvard-trained opthamologist asked me, "How often does she cross her eyes?" and I actually replied, "I don't know, I haven't counted." I think I'm suffering from appointment-fatigue and from feeling like there are a zillion things that "can" go "wrong" with a kid with DS, and I'm expected to keep "tally" of all of them, rather than just enjoy my daughter. It's energy-draining.

Today's appointment--back to GI. He promised me a month ago he wouldn't change Moriah's formula again, but she IS having trouble with reflex, and if he finds blood in her stool again, goodness knows what he'll decide. Today, I'll get to answer really fun questions like, what color is her stool? how solid is it? how frequent? why do you think she has reflux? and so on. Maybe it's the questions I'm finding so very tiring.

Also, the pediatricians this week for her two-month vaccinations (she's late because of her surgery), a visiting nurse, EI...this staying at home thing has NOT been the slow-paced life I thought it would be.

Moriah, though, is a joy. She's laughing now, and smiling a TON. She talks incessantly, to the surprise of our nurse and EI--they say she's advanced in that department, which is no surprise, since I pretty much talk to her nonstop. :) She's beginning to learn about her hands, and has a mean grab. It's pretty fun to hang out with her these days.

No news yet on our house...speaking of apponitments, house-shopping has added quite a few. :) We're hoping our offer on a house in West Bridgewater will be at least responded to by day's end today. In the meantime, we keep packing a box here and there when we can, and we're making plans this weekend to clean up our yard, put our garden to rest for the winter, and get some more packing done.

Off to GI...with boys in tow (they're home today)!

big, big news

Dear Family and Friends:

I know that some of you are going to find this news shocking, but we are moving out of Lynn to Jason's hometown in West Bridgewater, MA.

There are so many reasons for our move. Our friend downstairs has married and was moving anyway, making this a convenient time to list our house as a community. The boys have had a difficult year here in this neighborhood, feeling unsafe and lacking places for privacy and for play. And particularly since Moriah's birth, the need-level within our family has risen, leaving us less able to attend to the needs without. We are looking for a safer harbor nearer the love of family (Jason's parents and two brothers and their families all will be living nearby). We'll be part of a different kind of community--this time, not of friends, but of family.

We have talked on and off through the years of wanting eventually to be closer to family, and Moriah's birth brought those conversations to a poignant head. Originally, we had thought that Jason's parents might need us, now we see just as clearly that we need them. And we're really grateful that we'll be just as close to my mom living there as we would if we were to stay here.

A month ago, during Moriah's surgery, Jason took three weeks off from work to be home during her hospital stay and the start of her recovery. We were able to have a lot of time for conversation and prayer then, and quickly reached some conclusions about what our family needs. In three weeks, we went from thinking about a move to actually moving ahead with the idea. Two weeks ago, we listed our house on the market, and within three days, received a full-priced offer.

We were--and are--shocked, as life is moving much quicker than we had planned (this seems to be the common theme of the last few months, doesn't it?). We have until December 4th to pack up and move out; just yesterday, we went dumpster-diving for boxes and began packing up our office, making our plans more real than they had yet been.

We also put an offer on a home in West Bridgewater yesterday; we're waiting to hear whether that offer is accepted. At Thankgiving-time, we plan to move to West Bridgewater and stay with family or friends there while we close on a home. We hope to move in to a house by the end of the year.

This is big news, and we have such mixed feelings about it. We feel a pervasive peace about our decision, and yet great sadness to leave a city we have loved for eleven years. For now, we plan to continue to work here, which will help to alleviate some sadness, as we won't be leaving entirely, and all at once. But we will miss so many people, and feel a general sense of disbelief that our life has changed so quickly. We keep looking at each other and asking (as we did yesterday, while sitting in the Genetics waiting room at Children's), "How did we get here?" I am reminded again of the Kingsolver quote, that our task is to begin again from the "glorious debris."

Thank you for your prayers for all of us in this time of transition. We so appreciate you.

With love from a hopeful Team Winchell

our friend Eddie

In May of 2006, our son Orilus was admitted to Children's Hospital's bone marrow transplant isolation floor to begin his bone marrow transplant.

So many of you walked with us through that scary time, reading our "Care Page" online, bringing meals, sending cards, and praying for Orilus to weather chemotherapy, to receive his brother's bone marrow, and to recover well. And Orilus did recover--after two months on the isolation floor, followed by ten months isolation at home, he was able to return to school and regular activities, the healthiest he had ever been in his life, and medication-free.

There were many bright spots in our journey through bone marrow transplant. One of these was meeting a little boy named Eddie.

About a week into our stay on the isolation floor, our transplant doctor told me about a single mom who would be arriving on the floor soon with her little boy. The doctor suggested I try to connect with this family, as we were both Mass General Hospital families originally.

A few days later, I got on the elevator and met a vibrant woman; she asked me where to go to get her Children's Hospital ID badge. I promised to walk her there, and we chatted on our way to the Lobby. After living in isolation for many days, it was wonderful to find a lively person with which to have a conversation. After walking her to the ID center, I was sorry to leave her, but hopeful I might bump into her again.

Later that day, I noticed the last name of the family the doctor had mentioned to me appear on a nameplate next to a door down the hall from Orilus' room. I rushed back to my room, wrote the family a letter ("I know you don't know me, but..."), offering to help the family get adjusted to the floor and to transplant. I pushed the letter under the family's door and wondered if we would ever meet.

An hour later, there was a quiet knock at Orilus' room door. I leapt up, wondering if the mother had decided to come and meet me. Trying not to get too excited (most parents on the isolation floor, as you might imagine, don't even bother to greet one another, they are so exhausted and emotionally spent), I opened the door. Standing there (you know where this is going, right?) was my vibrant friend from the elevator!

We broke into laughter, and so began a friendship we feel was brought about by destiny.

Kori and I became close friends on the floor. It was such a relief to have someone to chat with; we'd meet in the hallway, in the kitchenette, or the "family room" while our boys slept and cry together, make dark jokes about our environment, and swap stories. Her son was named Eddie, and he shared the same birthdate with Orilus. Their story gave me chills...Eddie wasn't feeling well one day, started bruising easily, and one apponitment after another led to a diagnosis of aplastic anemia. Six months at Mass General in various therapies proved unsuccessful, and he had been sent to Children's for a bone marrow transplant as a last resort. His donor, unlike Orilus', was an unrelated anonymous donor, and Kori had good reason to worry about whether the marrow would "take" and whether Eddie, already weakened, would survive.

Orilus left the transplant floor long before Eddie, but Kori and I remained in touch. Both Kori and I were receiving generous aid from an organization committed to paying bills for families whose children were undergoing a bone marrow transplant. Months later, the organization was unable to continue to help Kori's family. I was enraged, as Eddie remained hospitalized, and Kori, a single mom with a baby at home, had left her job as a bank manager months before and had no way to work and care for Eddie.

One day during isolation at home, Orilus and I were baking cookies and I explained the situation to him. "Mum," he said, "we need to get money for Eddie." And so the idea of "Eddie's Fund" was born. Orilus wrote a letter to friends and family asking for donations, we opened an account at Eastern Bank, sent the letters out, and within a couple months, had raised funds to help Eddie's family pay their bills.

It's been three years since we began Eddie's Fund, and the Fund has continued, thanks largely to generous friends and family who have never met Kori or Eddie, but who give anyway. Every month, I write checks directly to the billing agencies on Kori's behalf, paying for the car she needs to get back and forth to Boston nearly every day (Eddie continues to struggle with serious medical complications post-transplant, and remains isolated at home), and sometimes, electric, heating, or medical bills. On average, the Fund pays $450 a month of this family's expenses.

Some of us are regular donors to Eddie's Fund, giving a little bit each month and trusting that our money, when put with other's generosity, will amount to what Eddie's family needs to keep going. And it has. For three years.

We're working now on another round of fundraising to replenish Eddie's Fund. Eddie has been diagnosed with Graft versus Host disease (a rejection of the bone marrow), complications from the twenty-some medications he takes each day to try to fool his body into finally accepting the marrow, epilepsy, GI issues...the list goes on and on. Every day, this nine-year-old gets up, gets dressed, gets to Boston for another round of tests and treatments; and every day, Kori does the same, getting her younger son to preschool, driving between hospitals, and keeping her own spirit bright for her kids.

Our family has come to love Kori, Eddie, and Marshall. We're proud of them, and of the good fight they wage every day to choose life and to hope.

If you are able to give to Eddie's Fund--whether once, or on a regular basis--please write your

check to "Eddie's Fund" and mail your donation to:

Eddie's Fund

c/o Eastern Bank

405 Paradise Road

Swampscott, MA 01907

Thank you for loving Eddie and his family with us!

Moriah is nearly three months old

Tomorrow is Moriah's three month birthday--from July 13 to October 13.

In so many ways, it seems that more than three months have passed. We are so relieved to have her home, to see her gaining weight (she's now over 11 pounds, according to our visiting nurse today) and to watch her personality grow. She has such a calm, sweet, sunny disposition...the "calm" part is the particular blessing to our household, which needs gentleness and grace in ongoing measures.

We've enjoyed a wonderful, long weekend, as we pulled the boys out of school Friday and spent some additional family time together. Long walks in the woods and through the neighborhood with our sons have brought fruitful conversations; it's amazing to see them grow and to watch them process their lives and their futures.

Tomorrow Jason returns to work after three weeks home with Moriah and me. We are really going to miss him, even as we are so grateful he was able to see us through such a stressful time.

This photo was taken this morning; enjoy the 11-pound nearly-3-month Moriah Pearl! She may be small for her age and have so many unknown challenges ahead, but she is well-loved.

Moriah update

We just returned from a visit to Moriah's cardiologist. After an EKG and chest X-ray, we met with him and he was very pleased with her progress. She's gained weight (weighing at 10 lbs, 4 ounces) and is feeding well. Her incision is healing beautifully, better (he said) than many children only a 12 days after surgery. All of her Dermabond (glue) is gone, and he also uncovered the tape that was holding her drain tube incision together; that, too, is nearly healed. He took her off Lasix, so she is now medication-free (we weaned her off Tylenol this past weekend)! And, though there are always risks post-op and Moriah will be monitored over the years, he doesn't need to see her again until she is one year old. It was a happy appointment--Jason and I are finding our sense of humor is getting darker and more ironic lately, so hospitals are, incidentally, prime places for that kind of comic relief--and though we are exhausted, we are so grateful to have a healthy girl. She'll need to recover for about 4-1/2 more weeks (no tummy time, no lifting under the arms) in order for her broken sternum to heal, and then, it seems congenital heart failure will be behind her, God-willing.

Thought you'd enjoy some updated photos of Moriah, showing off her incision. The naked pictures are from yesterday (her 12-week birthday); the one in pink is from today, with tape and glue removed.

late at night

It's foggy and dark at 1:00 a.m. tonight as I sit overlooking our street, a streetlight suddenly going out and leaving the neighborhood looking desolate. Moriah can't sleep after her feeding over an hour and a half ago, and neither can I.

I am unable to write in the last few days. This hardly ever happens to me, as you can imagine (sort of like Melissa being unable to talk--it just doesn't happen, hardly ever). But the last few days have been so tiring and so stress-filled that words just won't come.

To ease the minds of family and friends, however, we are all still alive here at Team Winchell headquarters. Moriah is recovering well and we're enjoying her return to smiles and a (usually) regular cycle of sleep. However, we have been challenged by some issues this week that we cannot share publically, and beg your prayers as we take some time to be silent, to seek wisdom, and to heal.

Thanks for your understanding, friends.

at home

Moriah is definitely on the mend here at home. Yesterday, "on the mend" meant a lot of fussiness...I think she was just plain uncomfortable. Those you who've had surgeries know how annoying even a scar can be, so I can't imagine how uncomfortable Moriah must feel, with a scar covering a broken sternum and a healing heart, even with Tylenol. It was a LONG day...she wouldn't sleep, and cried a ton, which is very unlike her. She did finally get a good night's sleep last night, and seems to be back on track today, returning to her usual 3-hour rhythmic cycle. The visiting nurse made her first visit this morning and we were happy to discover that Moriah weighs over 10 pounds now--since her surgery, she's been eating like a champ! And the nurse confirmed that despite Moriah's fussiness, she looks and sounds great.

I'm definitely recovering after the intense week of surgery last week, and am off to recuperate today, alone, while Jason stays home with Moriah. I'm hoping to find a quiet place for reflection and prayer, a good lunch, and a nap.

home

We are home!

Moriah and I arrived home last night at 7 pm. We surprised the boys, which was super-fun and a great birthday present to Jackson, as it was his birthday yesterday!

Many, many thanks to my mom, who went above-and-beyond in this last week and did so much to support us and help us out. She was there yesterday for the echocardiogram, the LONG wait for discharge, and to bring Moriah and I home. We are so grateful to be well-loved!

My thoughts this morning are with a baby who was added to our room yesterday afternoon before we left--a little boy named Jospeh, who appeared to be born with a severe cleft pallete. I had the impression that he is parent-less and may be a ward of the state, and his little cries all afternoon just broke my heart. May God bring him all he needs in the days ahead!

Also, a nurse yesterday shared her life story with me, through tears. A story that included the death of two of her three children. My prayers are also with her this morning.

We rejoice with those who are rejoicing, and mourn with those who are mourning. In this way, we experience life in all its beautiful and horrible fullness.

Thank you, friends, for grieving with us, for hoping with us, for standing with us. Your laughter, your tears, have been of great comfort to us. Moriah will have six weeks of recovery here at home (we have to be careful how we lift her, and be sure her incision heals well, and do a few doctor's visits, and have a visiting nurse)...mostly, we are marvelling that the surgery is really behind us, and the post-care not nearly as scary as we thought. So thankful this morning to have my husband home for the next week and half to help Moriah and me, and so thankful to God for all the loving people who brought meals, baked cakes, dropped off bread, sent flowers and gifts, showed up, walked our dog, picked up our children...where would we have been without this community of love? Thank you, all.

home today!

We should be leaving the hospital within an hour or so! I can't believe it...over the weekend, they said they'd do an echocardiogram today and possibly we'd go home tomorrow morning. But today they determined we are all set to go home; we're just waiting for a last check-up with the nurse practicioner and the cardiologist and our discharge papers. I can't believe it.

Saw Moriah's heart of the post-op echocardiogram study today. Mom and I could see all four chambers, the valves between them, and the two patches on the septal wall (the wall that divides the atria and ventricles). I had this overwhelming feeling of all that conspired to make Moriah well...the expansion of the cardiology clinic here at Children's in the 1970's (as our nurse, who has been here since then, told us), a man named Dr. Emani who decided at some point in his life to pursue cardiac surgery...so many little details, all coming together to bring health to our little girl. How does one say thank you for such a conspiracy of love? I am truly grateful, and our daughter is well because of so many people who chose a particular life course to better the lives of sick children. This is a God-work, as it is marked by love, and I am humbled again to see it sneak into our lives and make another one of our children whole. To have two children reborn to us by miracle-medicine, this is a divine work, and we are unsure how to even say thanks.

thanks

After journaling a prayer of thanks this morning, I opened the Psalter to this morning's reading and read these words: "Thank you! Everything in me says, 'Thank you!' Angels listen as I sing my thanks. I kneel in worship facing your holy temple and say it again, 'Thank you!' Thank you for your love, thank you for your faithfulness; Most holy is your name, most holy is your Word. The moment I called out, you stepped in; you made my life large with strength." (Psalm 138)

I love that image--a life large with strength. I used to believe that God's blessings were evidenced in goodness, as defined by things I wanted. But Moriah's birth has taught me again that this is not the case. I wasn't sure I wanted a baby; I got pregnant. I wanted a healthy baby, I got a baby born with an extra chromosome and a heart defect. I wanted a natural childbirth; I got a C-section. I wanted to breastfeed; I lost my milk. In eleven weeks, it seems that most of my prayers have been answered with a resounding "NO."

And yet. And yet I give thanks today, as one who is realizing again that when what I want in life actually does happen, it is a mercy, and a grace, and that when it doesn't, I might still learn to be thankful, and to trust. I wanted my baby's heart to be made well, and it is well. And mostly, I have asked for the strength to walk on through these past weeks. I sit in Moriah's hospital room this morning as the sun streams in the windows, and feel this strength, and say thank you.

Today is Moriah's 11-week birthday, and I took some photos of her scar, now that all of her wires and tubes are out, to celebrate. It's also Jackson's 12th birthday--his 6th birthday celebration with us. And, it turns out, it MIGHT be the day we're discharged from the hospital. Moriah had a fabulous day yesterday, resuming her usual eating habits and rhythmic way of life. She is going in for a sedated echocardiogram this afternoon at 1pm; if she wakes up well, and eats well thereafter, they may send us home. Unbelievable.

"For all that has been, thanks. For all that will be, yes."

hope

Sometimes, hope is profound. When we hope for a good outcome for our daughter, even while knowing the risks, for example.

Othertimes, hope is very simple indeed. After a long day yesterday of a flight-y nurse who was really freaking me out with her lack of attention to detail (this is the disadvantage of the 12-hour nursing shifts...it makes for a long, long day when the nurse isn't so great), today I'm hoping for a competent, communicative, able-to-remember-stuff nurse. I would love to avoid spending my day today telling the nurse when she last gave such-and-such medication and then having to correct her math when she tells me four hours have gone by (um, sorry, only 3) and Moriah is due for another dose (um, no she's not). Spoke with the charge nurse about that one yesterday evening in my best I-am-a-rational-and-calm-mother voice, so I have reason to hope today I will not ever have to deal with Nurse Crazy again.

Other hopes: that the sniffling nose I thought was a reaction to the dry air around here will not turn into a full-blown cold. That Moriah will continue to eat every four hours, a pattern she began overnight, much to my delight. That I won't need an afternoon nap again today; we're taking Orilus and Jackson to the movies to celebrate Jackson's birthday, and I'd love to stay awake for the entire film. That my grande cup of London Fog (oh, sister, how can I thank you for introducing me to this delight?) will never, ever run dry. That I'll have time to blow dry my hair this morning.

As I wrote this, a beautiful nurse appeared like an angel in the doorway, with a schedule for Moriah's meds today. A light seemed to shine from behind her. Hope, my friends, is not the thing with feathers...it is a blonde-headed nurse with a pad of paper, a pen, and a brain for remembering stuff.

May you, too, find lots of small (and even silly) things to hope for today!

moving east

Just as I was getting to bed last night (at 8:30--I know, I know, but this has been my usual bedtime since Moriah's birth, which might explain why I haven't returned your phone calls if you're one of those people who's actually awake past 8:30 and have tried to call me in the last 2 months)...the nurse got a phone call. A new patient needed Moriah's bedspace. So suddenly, suddenly, Moriah was deemed ready to leave the Cardiac ICU and move to the Cardiac floor on 8 East. Her central line was taken out, her paperwork handled...and we were moving. By 10. By 11. By 12. At 12:30, I finally wheeled my suitcase in my pajamas and flip flops behind Moriah's crib (she has a crib now!) from 8 South to 8 East. I think I got some sleep in between those hours, but not much.

I unpacked and resettled Moriah in the dark, as I'm sharing a room with another family. Got my linens. Made my fold-out-chair-bed. Crawled under the blankets for a good, deep sleep...and the other baby in the room began wailing. He settled down. Moriah started fussing. I got up and fed her. I was wide awake and finished a book by headlamp. Went to sleep. Other baby moaning. Moriah hungry again. I think, total, I slept maybe 3 hours.

But the good news is that we moved to the East floor which can only mean one thing...we are making progress! Moriah has so few lines now...just 2 IVs, one in each foot, for getting her meds when she needs them (they stopped the continuous fluids last night to encourage her to eat again). She has pacemaker leads implanted in her chest, just in case she were to suddenly need them--these are some of the last lines to come out before we go home. She had leads for heartrate and oxygen, and an occassional blood pressure cuff. That's IT. I can't believe it.

I have no idea how long we'll be here...probably 5 more days, at least given what we had been originally told. Moriah's lungs need to clear fluid, as they are quite wet (common after surgery). So she's taking Lasix for that. She needs to eat, and show she's eating enough, and putting out what she should. So we're back to weighing diapers, weighing the baby, counting ounces of formula...all too familiar territory for us.

Moriah has eaten three times since 9 pm last night, when she began. But she wouldn't eat this morning at all...I'm not sure if she's worn out, or if she just didn't like the Potassium I had put into her milk. Please do pray she resumes eating today so that she doesn't need IV fluids and can continue to make progress on her own.

They've also taken Moriah off the little bit of oxygen she was getting by nose since they removed her breathing tube yesterday. She's holding her own at a 100 O2 saturation!

Thank you for your continued prayers for Moriah. I'm so glad Orilus and Jackson will make their first visit to see Moriah since her surgery this morning, as I miss them terribly. Tomorrow, we're going to celebrate Jackson's birthday together here in Boston (his birthday is Monday, and he'll be 12). I'm really looking forward to having some good family time this weekend, and hope I'm awake enough to participate. :)

Big hugs to all from Moriah and me!

breathing on her own

As you can see from the photo, Moriah is on her way to becoming "wireless."

About 2:15 this afternoon, her breathing tube was removed, as well as the tube taking bile and air out of her stomach, and the oxygen monitor on her brain. Her face is mostly all clear, except for a nasal oxygen tube that's providing her with a little extra oxygen as she breaths on her own.

On her own. Yesterday, they stopped her heart, cooled her body to nearly freezing, and fixed two holes. Today, I watch the heart monitor's rhythms, watch her chest rise and fall, and feel the miracle of it all. The surgeon came by to see her this afternoon, and I thanked him profusely again (mostly, you want to ask these doctors to your house to dinner, maybe invite them to live with you forever, you become so quickly enamored and grateful to them for saving your child's life)...to which he said that what he had done had been really a small thing.

At first, I was thinking, the guy should really learn to take a compliment (if someone told ME my job was a miracle profession, I think I could at least say, "you're welcome"). But then I was reminded of Mother Teresa's words, "We do no great things, only small things with great love." I wonder if for Dr. Emani, heart surgery is his "small thing," the thing he does so well and so easily he almost takes it for granted. His gift. Even so, he did it with such tenderness and care for us and Moriah that I am deeply touched. His love-gift blesses me, and has changed my daughter's life.

Also, I'm touched tonight by the barista at Starbucks, who made a London Fog so slowly and with such attention that I was convinced it would be the best cup of tea I have ever had...and it is. Mmm. Small things, great love.

Shabbat

The sign in the elevator this morning reminded me that this evening is the start of Jewish Shabbat (Sabbath); for that, one elevator in this building stops at every floor for 24 hours, so that those observing Shabbat do not have to push the buttons and interrupt their worship. What a gift, to have an entire day set aside for worship and reflection, prayer and slowness.

I write from the Cardiac ICU (CICU, which our friends who have been here before endearingly call the Kick-You). Strangely, I do not feel "kicked" at all here. Instead, I am re-discovering the Shabbat calm that permeated my days here three years ago, when I lived for 2 months with Orilus on the isolation floor.

I understand that most people do not experience life-in-hopsital in this way. It is a gift and I can only be grateful for it, and receive it humbly.

My day began a few times this morning, as I was up at Moriah's bedside every 2 hours or so throughout the wee hours of morning. But when I finally got up at 6:30, it was to kiss my daughter again, to lace up my running shoes, and to walk the Fenway.

It's strange how my feet remembered the path. I walked, jogged, and ran this loop countless times in the two months I stayed with Orilus here three years ago, and the passing of that time, and all the life we've lived since, was too much for me to meditate on very long this morning. Instead, I marvelled, and put the thoughts away with a prayer of thanks. My iPod wasn't charged this morning, and this turned out to be a great gift, as I was able to pay more attention as I walked. There were familiar sights--around the next bend, the two stone buildings I remembered were still standing--and then there were surprises, things I had forgotten--the tressle of a bridge that is no longer in use--and new things to see--the rhythm of a couple jogging in perfect unison, the guy with amazingly long and beautiful curly hair, the ducks splashing in the river.

I returned to shower (on a different floor in a different building entirely, as there aren't showers on the CICU) and thought about all the hospital bathrooms in which I've showered...so many hospital stays since we adopted our boys five years ago, and that, too, was a thought too large for my heart to contain. I made my own breakfast, as Moriah's nurse for today watched me pull out my Tupperware, oatmeal, and apple and slowly realized that I knew more about hospital living than she had expected. I ate alone, in a Family Waiting Room (there is no food allowed here in Moriah's tech-savvy pod), at a round table. I greeted another mother who came to dig out her own cereal and bowl from a cabinet (the first stranger to speak to me all morning, as my "good mornings" on the Fenway were all ignored). She was strangely excited about the Harry Potter movie on television, and surfed the channels until she found it, turning up the volume to an unusually loud level. I was amused. The janitor came in to empty the trash. The mother left. The mother's husband came looking for her. I turned the TV off so I could finish my coffee, read another chapter of a book on spiritual living, and journaled in silence.

Meanwhile, Moriah was here, getting tubes pulled out of her body, the nurses preferring me to leave them to their work. So far, she's lost her catheter, a direct line to her atrium, and a chest tube for draining blood. The goal of today is to take out her breathing tube; we had thought this might even happen overnight, but she did not wake enough, and her lungs were too wet. So we wait today, and I feel my mind, body, and heart return to the all-too-familiar rhythm of slow hospital living. A Shabbat. A mindfulness I struggle without much success to maintain in my usual life.

This, today, is life. To know that my daughter's heart is repaired, and healing. To welcome the possibility of a long life for her, even as I ponder what this means. Maybe it means an increased ability to take each day as it comes, to do what I can rather than trying so hard to do it all, to see life as beyond my control. Jason and I have a feeling that Moriah is going to re-orient our lives, as the boys did in so many ways when they first arrived. We welcome the learning we need to do, the growth. But for today, we are just us, sitting in blue chairs around her bedside, reading books and making each other laugh, and relaxing in the calm after an anxiety-ridden day yesterday. Today feels like a Shabbat, a much-needed rest.

As my college classmates and I used to say to one another on Fridays after a First Testament lecture, "Shabbat Shalom." May the day bring wholeness, and peace. Not just to Moriah, but to all of us who are in such great need of Holy Love.

Healed Heart Day

We are so, so relieved to report that Moriah's heart is fully repaired, pumping on its own, and doing beautifully. The doctors keep telling us how beautifully her surgery went, and her nurse here in the Cardiac ICU says she's "perfect" and right where they want her to be. I have so much to write about today, but want at least to share our good news with you, and to share photos of Moriah as she looks tonight (she's sedated and intubated). I'm staying with Moriah while she's in the hospital (probably about a week), and Jason is back and forth, managing the boys at home and visiting us, too. We hope Moriah will be off the ventilator tomorrow (you can see that tube going into her nose in the photos) and will be free of the tube going into her mouth, which is pumping bile and air out of her stomach. Tomorrow, we may get to see her face without anything attached! If all goes as planned, we'll leave the Cardiac ICU Saturday for the Cardiac floor, and hopefully leave for home about a week from today.

Friends, THANK YOU for your prayers today. We were much-sustained and are so grateful for all your love and support. While the photos of Moriah may look scary to you, to us they represent the start of her new life, and the potential she now has to live long, and well. Celebrate with us--Moriah's healed heart day!

Off to bed...it's been a long, long day and I am so tired. Many thanks to you all for loving us today.

Pre-Op today

We survived...and dare I say, thrived...in Pre-Op today! Thank you so much for your prayers and thoughts for us today...we felt so surrounded by love, and had strength for every moment. The day was long--6 hours--and we were bombarded with information, meetings, and procedures, and grew tired of sitting in plastic chairs. :) But as usual, we found the staff at Children's to be amazing, and a great help, and we left today feeling Moriah is in good hands--theirs, and God's.

Tomorrow's surgery time has been moved to noon. The surgery will last 5-6 hours, in which time Moriah's chest will be opened, her heart and lungs stopped and placed on a bypass machine, her two holes fixed, her extra tissue removed, and her heart (hopefully) restarted. Pray with us that they can restart the heart in the OR; apparently sometimes some kids need to come out of surgery still on the bypass machine. We're praying for a fully functioning heart at surgery's end!

Our good friends whose son went through a similar surgery last year told us how they turned their anxiety-filled waiting room time on the day of surgery into a celebration of sorts. It reminded me that this was one of the key ways we survived Orilus' transplant--we marked days, and celebrated them. I remember on Orilus' transplant day, we hung signs everywhere that said "New Life Day" and decorated his isolation room entirely. We're going to do this tonight, here at home...hang signs for the boys to see in the morning, celebrating Moriah's "new heart day." We are hoping for a new heart, and so that's what we are going to celebrate, even in the face of risks. There ARE risks, but there is hope, so we will trust that Love will see us through.

So, friends, party with us tomorrow as we welcome Moriah's HEALED HEART DAY with open hearts of our own! We will be thinking of you all as they take Moriah from us tomorrow around noontime, knowing that as they empty our arms, you are filling our lives with your prayers and whispers for peace and grace. We love you for that.

Happy heart day, little girl. May Jesus show you his great, great grace and make you well.

now on email!

We've added a "subscribe" link to the right-hand sidebar of our blog for those of you who want to be notified of our updates by email. Hope this makes staying in touch a bit easier for you!

videos at 10 weeks old

to-do's

Jason is home from work for the next two weeks and after a full weekend visiting family, we began ticking items off our to-do list today in preparation for Moriah's surgery. Call doctor so-and-so. Cancel appointment such-and-such. Meet with Early Intervention. Finish schedule of who is where and who is helping and what we are eating in the next 2 weeks (yes, it's on an Excel spreadsheet). Sort baby gifts. Store too-big baby clothes in the attic. Donate those that are too small. Email. Run to Target for jeans that actually fit, snacks for the hospital, and Jackson's birthday presents (his birthday is in one week). Iron. Make an appointment to have a family portrait taken. Try to maintain smiles--one crying baby, one grumpy teenager, and the rest of us hungry and tired--during said portrait-taking. Answer the phone. Ignore the phone.

It has been a full and busy today, with tomorrow's to-do list already growing, as Wednesday is our all-day of Pre-Op, and Thursday is the actual surgery. For us, tomorrow feels like the last day before it all begins.

On the one hand, we are coping by doing one thing at a time, by making plans (always I laugh at this irony--so much out of our control, and so obviously, and yet I insist on making a schedule, planning meals, and doing other tasks that help me to manage/control what I can). We're not falling apart, in fact, we're hardly crying. We are having difficult conversations--again with the boys tonight, and with each other last night, as Jason recalled (grimly) the meaning of Moriah's name as we find it in Scripture. Moriah is the name of the mountain on which Abraham nearly sacrificed (or sacrificed, depending on your tradition) his son, Issac. We are left wondering...will a "ram" be provided? Will we see the hand of God's provision this time? And how--and how painfully--will our trust in God be stretched? I think of Abraham, who walks down the mountain, and seems to be alone (his son is not mentioned at the end of the ordeal). Why was he alone? What was he thinking then? And I think this mountain-sense--that we must climb the mountain of Moriah's heart-health, that it is an inevitablity we must face--leaves us wondering how we will venture "down" from the mountain--alone, or with our little girl in our arms?

We hope, how we hope, for provision! We comfort ourselves with our surgeon's reputation, and the reputation of Children's Hospital, and the relative ease of the surgery as heart surgeries go. What is not comforting, it turns out, is our faith, insofar as it gives us no guarantees of any outcome. Instead, we find again that faith is being sure of what we cannot see, and that what we cannot see is not the outcome (actually, I can imagine Moriah healthy quite vividly), but God Himself. God is the great mystery, and it seems to us that as the years go by, we understand Him less, even as we grow in our knowledge of His love for us more and more. It is a paradox. I cannot explain it--what it feels to be so completely loved, and yet so utterly unsure that Love means "rescue" everytime.

I've actually been thinking of this, too, this rescue imagery. Some of you know I once completed a lifeguarding course as a high school swim coach. One of the most startling things I learned in that course was that often, to save a drowning person, a lifeguard must push the person under the water, and hold her there until she stops struggling. Otherwise, she will take the lifeguard down with her, putting her own life and the lifeguard's in danger, and thwarting her own rescue. Lately I feel like this drowing person, wanting to take God down with me by outlining for Him exactly how I'm sure He should behave. And He is much too big for that, and too strong, and so He necessarily pushes me down under so that I stop struggling. I must surrender. Perhaps this image is too stark for many of you, but it makes sense to me, and helps me to trust God more, to see that pain can be a great gift, can even result in my own salvation.

We so appreciate your prayers as we continue to grapple with what these days may bring us, to hope that they bring a new heart for Moriah, and to walk with faith and love up a mountain that seems rather steep right now. What will we find there, on our Mount Moriah? We are not sure, but we are sure that like Abraham, like the Jews that followed later in pilgrimages up Mount Moriah to their temple, we will find a great teaching-place, and return from our pilgrimage marked by surrender, and kept in the great Love of our mysterious God.

weekend

We are spending the weekend with family--mine yesterday, Jason's today. My mom's birthday was yesterday, and Jason's dad's is today...and it's sort of last get-togethers-before-surgery. I'll post more, I hope, at the start of this week, when there is a bit more time...though our to-do list before surgery seems to be growing by the minute. We are experiencing great calm, though. Thank you, friends, for your prayers, as I really feel sustained in these days!

a word of encouragement

A friend sent this to me this morning, and I thought it so appropriate, especially since Moriah's middle name is Pearl:

"A tiny bit of sand lodges in the flesh of an oyster and becomes an irritating intrusion. Unable to expel it, the oyster covers the particle with layer after layer of a milky secretion until the irritation has become smooth, round and acceptable...Unlike other gems, pearls are drawn from something that's alive. Pearls are produced by a life that has overcome affliction, that has overcome suffering. Little wonder they are so valuable!" Pearls of Great Price by Joni Eareckson Tada

surgery will be Thursday

In the midst of a day in which Moriah and I were running between two Boston hospitals, the Cardiac Clinic at Children's called my cell phone yesterday to tell me that Moriah's heart surger will be Thursday, September 24th. We'll spend Wednesday in Pre-Op appointments (how I remember this from Orilus and Jackson's surgeries pre-transplant!) and will receive a surgery time during those appointments on Wednesday. Most likely, we'll be asked to arrive at 6:30 am and surgery will probably begin a while after (8 is my guess). It will take 5 hours, about an hour of which will be the time in which Moriah's heart will be stopped, put on a bypass machine, and then taken off the machine to restart on its own. Writing those words make me want to throw up.

Time, time, time. In typing that paragraph, I realize how often I'm typing times--dates, hours. What struck me over and over yesterday was the calm that Moriah has brought me with regard to timing. Yesterday, again, she had perfect timing. She woke up hungry when we were sitting in waiting rooms. She was awake for her most important appointments, when doctors wanted to play with her and check on her development. She slept while we drove in to the city, between the hospitals, and out of the city. I remember in Haiti, when I was living there for a month right before we brought the boys home, I attended church with another adopted mom. The pastor was preaching in English and Kreyol, and so I was able to understand when he explained that there are 2 words for time in Greek--chronos and kairos (sorry to all my seminary scholar friends if I've misspelled those). Chronos is time as we usually know it--hours, minutes, appointments, schedules. Kairos is "ordained time"--time as God creates it, providential timing. As in planned, or purposeful, or meaningful time.

I got to thinking yesterday that Moriah is a gift of kairos timing. She seems to have this way of arranging my days, even the busiest ones (as these last few have been) to be ordained and purposeful. I've not once been frustrated with her for waking up, eating, or sleeping at the "wrong time." I'm learning to trust her timing. And it gives me this general sense of hope with regards to her surgery, that because it's her, the surgery must be right "on time," coming just as she needs it most. I'm so comforted to know that God and Moriah are conspiring together (at least, I think so) to make kairos time happen.

We had the difficult conversation with Orilus and Jackson last night over dinner about if Moriah could die. We were honest with them. Words can't express how I wanted to just cry at that moment, and wish to have the power to take away all my children's pain--the pain of anticipation and worry among them. We explained to them how difficult it is for us sometimes to believe in God, to trust Him, how angry and disappointed we sometimes are because He doesn't do things the way we want. His goodness is not always our pleasure. And yet, we learned during Orilus' transplant, and will learn again, that though our faith guarantees us no outcomes, it does provide meaning to the narrative of our lives. It helps us to make connections, and to see what otherwise could be unseen and ignored. Things like kairos timing.

So we are trusting this is all purposed and purposeful, somehow. We are hurting so much, and finding again that surrendering is much, much more painful than we ever thought. We so appreciate your prayers for us as we try to trust in God's kairos.

surgery will be next week

I've been awake since 3:30 this morning, so this will be necessarily brief.

Moriah did a GREAT job today...she took sedation medication like a champ, and woke up as soon as they were done (and I mean, AS SOON...she has amazing timing, seriously. Actually, Jason told me she reminded him of a Meppelink--for those of you who don't know, this would be my mother's side of our family--who are notorious for being fast-paced, impatient, and forever ready to "move on"...this is very much my personality, so I was quite proud of her). We were relieved she handled sedation so well, and the cardiac clinic was able to get all the pictures they needed.

Briefly, the echocardiogram showed 2 holes as we had seen them originally after her birth--one between the atria (a medium-sized hole), and one between the ventricles (a very, very large hole). There's also some extra tissue in her left atrium that will need to be removed. As the cardiologist put it, she will NOT get any better than she is right now, and will only get worse, and given that she's old enough, and big enough, he'd like to proceed with surgery.

He's putting us on the surgical calendar for next week...we are waiting for his office to call us (hopefully tomorrow) with an exact date.

As I write this, I feel for the first time real nerves--butterflies, and a pit in my stomach. Most of this evening, I have felt shock, and some weird sort of denial. Perhaps the sort that helps a person to keep it together in front of doctors and in front of one's other children. Jason is feeling simliarly. It's like we both KNOW we are freaking out, but we don't actually feel it. This may sound strange, but it's a grace for now. I don't have time to freak out--Moriah has two totally unrelated appointments (GI and Down syndrome clinic) at two different Boston hospitals tomorrow. Another long, long day, and this one, I have to do alone (was so glad to have Jason with me this afternoon, as I would have been overwhelmed without him).

I began my day after carpool at Lynn beach, walking the boardwalk deliberately and slowly (in contrast to my usual I-must-lose-baby-weight pace). I stood for a while at the beach and prayed, and offered my day to God, and asked for beauty, and sanity, and peace. And mostly, I asked for awareness of His presence, the faith to believe Spirit really is all around, and Love is not far away. I felt these things today, and as I end the day now 12 hours after standing at high tide's edge, I hope again for the grace to take this week one moment at a time, the grace to forge a new life from the one I expected, and was not given. Grace to trust the Giver, and receive the gift--Moriah, and all she is teaching me about hearts and love, weakness and inner strength.

morning wake-up

Woke up this morning to Moriah's choking on lung fluid. If ever there was a cry for mercy, the one I feel this morning, though I am unable to shed any tears, is such a cry. God, have mercy on her!

So thankful the echo is today. In great darkness, I can see such light. Today, the light of ordained timing, amazing friendships (thank you, Amanda, for helping us out this afternoon), and the tender humility of a day begun in desperate prayer with Jason.

cardiology tomorrow

Quick Update:

Moriah's echocardiogram has been rescheduled to tomorrow at 2:00 pm. She will need to be sedated, so they can get good pictures of her heart. We should know thereafter if she will need heart surgery; the cardiologist agreed with me yesterday that we should move forward, and quickly, if the holes are there. He said that her brain is developed enough to handle the start-stop of the heart that will be required of her in open heart surgery, so we are able to move safely forward.

It's been a difficult day for Moriah; lots of loud, fast breathing.

Please pray for us to find a way for both Jason and I to attend the appointment tomorrow, which actually begins at 1 and probably won't finish until 6. We're mostly praying for clarity for the doctor, that what needs to be done will be obvious to him, and to all of us. We're praying for peace, especially for our little girl.

pediatrician update

So...we went to see Moriah's pediatrician today. She weighed in at 9-1/2 pounds; actually, not that much since her last weigh-in two weeks ago. The pediatrician confirmed that Moriah looks great (and she does...no blue skin or physical appearance of heart failure, though he was concerned about the symptoms I described to him). But when I called the cardiologist back to tell him her weight and the pedi's impressions he decided we should be seen soon anyway. I'm waiting now for his office to call me back (probably tomorrow morning) with Moriah's new appointment time for a sedated echocardiogram and follow-up consultation with the cardiologist. The echo will allow the doctor to see her heart again, confirm the presence of the holes, and if they are there, schedule the surgery. He agreed with me that there really is no point in waiting longer; she weighs well, she's old enough, and he understands we'd like to move forward before she gets any worse.

I have to say, I had the distinct impression a couple times today that the doctors didn't really believe me. Apparently it's really unusual for symptoms of heart failure to come on so quickly. It's strange that her rapid breathing is not all the time, just some of the time...apparently. But I'm finishing this evening with a little girl who should be eating 25-30 ounces a day, and took only 16 all day today (and let me tell you, that's only because I offered her food every single time she woke up, even if she wasn't asking for it). I sit typing at the dining room table with the monitor next to me so I can hear Moriah as she sleeps in my bedroom, and her breathing is so loud and so quick I know that something is wrong with her (earlier tonight, I counted 93 respirations in a minute, and anything over 60 is fast). So maybe it's not classic heart failure. I don't know what it is; I'm not a cardiologist. But I AM a mother, and I know when my daughter is fussier than usual, less hungry than usual, more tired than usual...and I know when my heart is breaking as I watch her. This for me is the "loudest" symptom of all.

I've been reading another book, Expecting Adam, this week. It was sent to me from my Dad and Vicki, a memoir by a mom whose son has Down syndrome. It seems this is the only way I can take in information about Down syndrome since Moriah's birth...through stories. I have yet to open one "informational" book from the library stacked in the pile in my dining room. But this book, Expecting Adam, so well describes what I think, and feel...it is like meeting a friend, and it feels hopeful and healing. It is also hilarious, and a wonderful memoir on motherhood in general. It has been a great gift in my life in this last week, bringing light when I couldn't see too well.

Also a great gift...the unexpected graces of "daily bread," and I mean that literally. We had three people bring us bread on Friday...I felt as if God were reminding me to trust for daily, moment-by-moment provision, though it was such an obvious metaphor it made me laugh aloud. Then, as I typed this blog post, a friend called about carpooling tomorrow, and prayed with me, and I felt the reminder again. Daily bread. God's presence, just when I need it. Grace for now.

2-month birthday

Yesterday was Moriah's 2-month birthday! Happy birthday to our little girl.

Thanks for all your thoughts and prayers this past week. My mom went into the hospital suddenly last week and ended up needing her gall bladder removed. She's home now, and recovering well. I'm really glad I live close enough to be able to run back and forth to see her--I'm back to Worcester again tomorrow to hang out with her at home while she rests (you ARE resting, right Mom?!) and recovers.

Moriah's doing about the same. She's on Lasix now, and continues to have episodes of quick breathing. She's eating less, and becoming more fatigued while she eats--yesterday, it took an hour for her to eat 2 ounces. I talked with her cardiologist again this morning and he asked me to take Moriah for an urgent care visit to her pediatrician today, to check her weight and to see if something else is going on (ie a flu) or if he believes that what we're seeing are signs of heart failure. If they are signs, we're going to need to see the cardiologist this week or next, and put the surgery on the calendar within the next couple weeks. He agreed with me that there's no sense in prolonging surgery if surgery is what she needs. We've waited for her to gain some age so that her brain can develop (this is helpful, he told me today, when they stop and restart her heart during surgery...gulp). She's old enough now, her brain developed enough now, for the surgery to proceed safely.

So we're waiting today...our pediatrician will weigh in this afternoon and we'll go from there.

Orilus and Jackson are doing great through all this. They have proved to be SUCH a blessing...after so much struggle in their own lives, it's so amazing to see them adjust back to school with little fanfare, to enjoy their classes, to have friends (they are now tying up our phone quite frequently, actually, talking with their friends). Orilus is playing soccer on the middle school team this year, and Jackson has signed up for drama club again--he's hoping to again do the lights for the show this year (he LOVES electronic/engineering-type stuff). Jackson's also wanting to resume piano lessons this year, too. They are absolutely adorable with Moriah--picking her up when she cries, carrying her around, feeding her, sitting with her, kissing her before they go to bed each night, running back into the house to say good-bye to her before they go somewhere...it's done my spirits good to think about what an amazing gift of healing and calm Moriah has been to them.

Thank you for your continued prayers for all of us. We feel so needy sometimes, and are so humbled by our own tears, doubts, and fears. We are grateful for love expressed through you.

sadness tonight

Feeling sad tonight. A close family member (not living in our household, but someone close to us) is in the hospital and is going to need sudden surgery this week. Also, Moriah is showing signs of heart failure in the last few days...I got so little sleep last night because I kept waking up to listen to her loud, way-too-fast breathing, and counting her respirations per minute. I called the cardiologist today and he put her on a medication to take fluid from her lungs and help her heart to function better; we hope it will improve her labored breathing. She's also not eating as much, or as efficiently. She's overtired, and fussing more...it looks like surgery is most likely, and maybe sooner than we thought. I'm not surprised by this, just exhausted and sad for all the difficult news today.