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.