breaking point

Jason and I are reaching a breaking point. We knew it when we started arguing this morning soon after we got up--really arguing, something we haven't done in months and months--over something as stupid as whether to fold up the pull-out couch before telling Jackson to hurry and get out of the shower, or after. Jason had the presence of mind to say to me, "I can't believe we're arguing about this, like this." And he was right. We don't argue that much (anymore), and we certainly don't get so fired up so quickly about so little.

Which can only mean one thing. We are exhausted. Spent. Reaching new lows.

We've both had nights in the last couple in which Moriah wakes up to feed and stays awake for a couple hours. Since Friday, her medication is making her sleepless; in 24 hours, she's slept now only 6. We are worn out. When she eats, she is voracious (another side effect of the steroids), and it takes about an hour to do a feeding. Times 5-6 feedings a day = 5-6 hours of time (usually mine). Yesterday, when Val came to visit she asked me (in kinder words that I can think of now) why I'm feeling so busy and tired, and it took me until this morning to realize...add up feed time, changing time (which now includes a few extra minutes of testing pee and poop), visiting nurse three times a week, and a complete lack of napping during the day (Moriah is now napping no longer than 10-15 minutes at a time during the day so I'm not getting any nap-break at all), and you get...us. Tired and overwhelmed.

And did I mention we have two teenage-ish sons, one of whom is really giving us a run for our money these last weeks?

We dragged ourselves to church this morning anyway. Mostly, I hate to admit it, because I had committed to our pastor to be there so that he and some others could anoint Moriah with oil after service today and ask God to heal her. That, and we love our morning parenting class there. And they have unlimited coffee at church. And we're enjoying our pastor's series on the book of Jonah. But mostly, mostly, because I had said we'd be there.

Moriah is not her sunny self anymore. She's more tired, and fussier, and sure enough, she and I didn't last the entire Sunday School class. By the time I got to service, I was frustrated I had bothered to come with a kid who won't sleep longer than 15 minutes, is fussy, and can't stay in nursery for fear of her weakened immune system.

And then, don't you know, who's leading singing this morning? The special needs adult Sunday School class. I don't know about your church or parish, but I've been in a lot of churches, and I think this is one of two I've seen that have a group just for adults with special needs. Really cool, actually. So I walk in, frustrated to be a special needs mom, and watch about a dozen men and women with special needs take to the stage. A couple of them share a reading from Psalm 139: "You knit me together in my mother's womb...I am fearfully and wonderfully made." Interesting, as Jason and I have been discussing that exact passage, wondering what it means for our Moriah...did God make her like this? Was he looking the other way? How exactly do birth defects, genetic defects, and baby ailments fit in to a worldview of a loving God? And then...and then they started singing. Loudly. And clapping. And bouncing up and down. And doing hand motions to their songs. And yelling when they got excited.

It was the first moment of joy I had felt all morning, to see people so energized about loving God back.

And then, I got to thinking. Someday, Moriah will be up there, a grown woman. Will she read? Will she sing loudly into the mike? Will she remember the hand motions? Will she throw up her hands in praise and dance with joy? And my heart began to break, because I want her to be like this--in love with God, and happy, and free. And yet, I want her to be...typical and be without special needs at all. And I can't have it both ways.

Usually in our church, nobody claps after a song. Actually, our church is fairly subdued compared to other churches I've been a part of. But this morning, the church was on its feet, clapping and doing hand motions, and after each song, clapping in encouragement for the group to sing on. And when the adults finished their song-leading, the place erupted in applause, and many of us stayed on our feet, giving the group a standing ovation.

I'm not sure what everybody else was thinking. I think a lot of us felt like these non-typical folks actually led us closer to loving God more fully, more unabashedly, than we usually get led on a Sunday morning. And that it was so refreshing to be led so freely. I'm not sure what everybody else was thinking, and I tried to remember what I might have thought before Moriah, as an observer like many in the church, as one untouched by a child with special needs. A sort of detachment, as in, they sure were cute, or amazing, or happy, and God bless those dear parents who raised them (and I'm so glad it wasn't me)? I mean, come on, isn't this what we all think when we see a person who is not so typical...but by the grace of God, go I? But is that really grace, after all, or our mixed-up notions of what "blessing" really means?

I, of course, couldn't watch and participate this morning without feeling that these adults were connected to me, and were, in fact, family. This made me happy, and proud, and angry, and sad, all at once, and when we took our seats after the applause (the adults left the stage skipping and whooping for joy!), I burst into tears and cried, eventually leaving the sanctuary to have a good cry with God in the ladies' room. I think He showed up there as I sensed a loving presence, and then I was overcome with tiredness and found an empty classroom and laid down for a while on the floor, to rest.

This, after all, is what church should be for, right? I think I remember Jesus saying he came not for the healthy, but for the sick. So I just laid myself right down on that carpet like his best patient, and waited for the strength to get off the floor, which came 30 minutes or so later.

I haven't really processed what happened today, and I have no cute-and-neat conclusion here. Just some raw emotion. A sense that we are being broken, over and over. A hope that God will meet us where we are broken, or tired, or angry, or sad, and that he will heal our sicknesses of heart. We are at a new breaking point, and I am grieving this week, maybe for the first time really, that I have a daughter with a seizure disorder, a daughter I am forced to inject with a steroid whose side effects I can barely tolerate seeing in her. I am grieving for the weaknesses I find in myself over and over, the moments when I just want to quit, the coming-to-the-end-of-my-rope that comes too soon and too often.

"A bruised reed He will not break; a smoldering wick He will not snuff out." --the Scriptures

do-over

So many times this week I've had to remind our boys (and one in particular) to "do over" their words or behavior. Yesterday's conversation on the way to school went something like, "Before we get out of the car, we need to set our relationships right and begin our day again. You both need to apologize to each other before you start your school day." Interesting. One did so sincerely, and when I came to pick him up at day's end, he bounded out of the school building with a super-cute comment about the "crazy weather" (snow showers followed by bright sun). The other made a less-than-sincere apology (um, actually a sarcastic and defiant one), and by school day's end, continued to carry the weight of a broken relationship, climbing into the car slowly, angrily, and barely able to speak.

Do-overs. How many times, in the worst of the depressed moments I've had since Moriah's birth, have I wished to do-over so many of the moments we've experienced! The moment she was diagnosed--to have touched my baby for "who" she was before I knew "what" she had. To have shed fewer panicked tears. And maybe, yes, it's crossed my mind, to go back to the "way we were"--a family of four, not of five. These have been painful do-over wishes.

This week I realized that I'm left with one consistent do-over. Monday I was exhausted and barely functioning. Tuesday I realized I had a chance to re-do Monday, to wake up and welcome the new day as a chance at a do-over, to be less curt with the boys and more accepting of all the appointments for Moriah I was dreading.

And then today came. This morning I was exhausted. When my alarm went off this morning, I truly thought it was for Jason, who by then was already long gone on his way to Lynn. I had already been up once during the night--at 3:30 am--to feed a voracious Moriah (the ACTH makes her so hungry, and she took nearly 15 ounces). And by the time I returned to sleep, at 5 am, I had only an hour of sleep before my alarm rang. I tried hitting the snooze button a few times. I tried waking up Jackson (always the first of the boys to get up and shower, as he takes the longest to get ready in the mornings) and returning to my sofa bed. And then I realized--Melissa, this is your do-over. Get up. Get going. Start a new day. And just as I thought this, Moriah woke up and started babbling, and I stumbled over and looked blearily into her pack-and-play (she's long outgrown the cradle she used to sleep in here and our crib mattress is--where else?--in storage, awaiting our move), and saw she was smiling so broadly. Welcoming a new morning, as she always does. Anticipating joy before it even arrives.

I love that. Her medical issues have certainly added stresses to our lives, but she is also the one who most often reminds me why life is worth doing over, day after day. She smiles, and gives me courage to welcome a new day, and the strength to ignore the unknown days ahead. The do-over, she seems to say, is right now. Get up, Mom! Here I am! Ready to start again!

our sunshine

Moriah is back!

Moriah woke up yesterday morning all smiles, back to her usual self. She's continued to be less fussy yesterday and today, and smiles so easily again. We can only thank you for your prayers, as the doctors warned that the month would be increasingly miserable for her, and yet here she is, with these days of reprieve.

Also, the ACTH does seem to be working. Her seizures are nearly gone; for the last two days, I've noticed only 1 instance of Moriah looking startled, and this only with her eyes--her body stayed perfectly still. If it was a seizure, it was slight, and short.

The real test of whether the ACTH has cured Moriah will be when we begin weaning her from it. The wean begins in a week. Keep praying!

And the days this week have gotten progressively better and better. Monday I stayed in my PJ's all day and did some things here at the house (mostly, rescheduling appointments we missed last week). Orilus and Jackson's teachers continue to be a HUGE help, tutoring the boys after school each day so that more of their homework is done by the time I go and get them. And I've learned to ask for help again, even from people I barely know--so grateful for our new church and the people there, as one family graciously included us in their youth group carpool last night, saving us the trip to church and back, and giving me some time yesterday evening to make some freezer-meals so that the evenings ahead are not crammed quite so full.

Monday I also had the presence of mind to call my new friend, Helen. I met her through the Brockton EI Down syndrome support group and we have begun good friends already. She came over with her son yesterday and we spent much of the day together, even walking over two miles with our babies and enjoying yesterday's sunshine and warmer air. It was a day I really needed, as it helped me to feel so much more settled, and more confident that I'm going to be okay here in West Bridgewater.

And...we are on track to close on our new house next week! It's been a longer road than we anticipated (we've been living with my in-laws now for two months, and are so grateful for our time here). It will feel so good, though, to get settled, recover our belongings from storage (I ran out of my three-week supply of shampoo a long time ago, and Moriah has grown a few sizes since we've been here, and Jackson's grown out of ALL his pants...). It's unbelievable still to me that we moved, but last week served to show us exactly why we did. I'm not sure what we would have done without the support of family nearby.

Mostly, I'm grateful this morning for all the spiritual support and encouragement that has come our way. For emails. For prayers. For our pastor, who called last night and offered to gather the church leadership to pray for Moriah this Sunday. For cards in the mail, and gifts of prayer books and readings on suffering. Thank you, friends. We have had many needs in these last months, and you are God's hands, reaching out to meet them as evidence of His love.

home

We are home.

We've spent the weekend recovering, or trying very hard to recover. It's certainly been difficult--the boys' constant energy levels are no match for our emotional exhaustion. Yesterday we took the boys geocaching for the first time (thanks, Sandy! so excited to start this!) and we tried to weather their mood changes and demands for attention amidst family visits here. We were really grateful for Jason's brother and his wife, who took our sons for the afternoon today. I slept the entire afternoon away.

Today has been an overwhelming day, frankly. Moriah isn't allowed in the nursery at church (her immune system is weakening as she stays on ACTH); we kept her with us, and she had a seizure in the middle of Sunday School class, which was heartbreaking and strange. So many well-wishers there, for which we were so grateful, and felt very encouraged. And yet, it made me miss the comfort of those who know us well, back in Lynn.

I realize today I'm overwhelmed by looking either behind me or ahead. Thinking about how the carefully-crafted routine I've made in the last month is blown to pieces; Moriah can't go to the daycare at the Y, so I'm unable to get in the morning run I desperately need to stay sane. The boys back to school tomorrow, and I've got to get up to speed again with homework and long-term projects. Suppers to prepare while managing homework and a very, very fussy Moriah (Jason is calling it "roid rage"). She's losing her sunny personality each day, and is so upset and inconsolable at times. Jason back to work, the long commute to Lynn taking away time when I could really use him here at home. How I need strength and renewed joy for the week ahead! And how I'm dreading injecting her every morning; today's injection was painful for us both, as my slight hesitation meant a less easy entry through the skin, and Moriah screamed and screamed. I have to remember to commit to her well-being, when commitment means inflicting pain on her.

And this week the challenge is not to look back, not to look too far forward. To be present. To breathe and inhabit the space of "now" and trust that God is there. "This is the air I breathe," we sang today in church, "your holy presence living in me." Prayerful breathing is about the best I can do right now, so it's going to have to be enough.

on our way home today

We ARE going home today! The doctors confirmed this during rounds this morning.

This morning I gained permission to take Moriah off the floor. I put her in the Baby Bjorn on my chest and walked her downstairs, avoiding crowds. It was the first time I have left our floor since Wednesday (and did I mention I have not been outdoors since Saturday?). Without intent, I found myself heading for the hospital's interfaith chapel. Inside was a large piece of paper for those of us waiting for word from Haiti. There, I wrote the names of families we know, including the boys' relatives, and our sponsored child, Jeffte. The Scripture nearby was one from Psalms 46: "God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea...the Lord Almighty is with us." I cried and cried, for all the pain, and for how easily confused I am when the earth shakes, when my world is turned upside down, when suffering comes. Eventually, I walked to the front of the chapel. There was a prayer there, words of affirmation expressing God's mercy and ability to comfort and to heal. Nearby was a dish of olive oil. I dipped my finger in and annointed Moriah's head with oil; in my faith tradition, oil is a symbol of God's Spirit, of God's choosing. Yesterday I did a lot of praying, thinking, reading, and listening, and came to this conclusion: Moriah's Down syndrome, her suffering, is ordained by God. Which is not to say He likes it; I think, as we see in the example of Christ, He weeps with us in our pain and our losses. But somehow I cannot believe in a God who "allows" things to happen, like an idle wallflower who somehow "lets" things slip by Him. I'm spending a lot of time meditating on Psalm 42 (so often in my life, I return to Psalms for the words to express what I am feeling!) and I am reminded again that God is King. Moriah's suffering is ordained, it is purposed, and purpose-filled. This brings me great comfort today. And so I annointed Moriah's forehead with oil as a symbol today that God is the Chooser, that He has chosen her, and chosen us, and that today I will open my heart to what those purposes might mean in our lives. It breaks my heart to open it so wide, but maybe, this is the purpose, and what I most need, who I most need to become. Like Moriah, a girl with a scarred heart.

"My tears have been my food day and night...all your waves and breakers have washed over me. Why so downcast, O my soul? Put your hope in God. For I will yet praise Him." (Psalm 42)

Again, I'm asking you to pray for us. I always do better in the hospital than when I get home. Here, I have a singularity of purpose--I mostly tend to Moriah. Once I get home, I have to do the great juggling act of 2 boys, Moriah, meals, schedules, homework...and now, with Moriah needing a daily injection, and getting fussier, and unable to go out in public much...it is hard not to get overwhelmed. Please do keep us in prayer this weekend, and next week.

And being home means I have SO much less time for updates. I will try my best, but if you don't hear from us, it's because my life has split open into multi-tasking once again.

Thank you, all, for loving us online so much this week! We've needed your encouragement so much.

going home?

So it turns out there is a possibility we may be going home tomorrow evening! We're standing by...

Thursday update

Moriah is having a good day today. She had the longest, most severe seizure I've seen yet this morning about 8:30--the episode lasted 20 minutes. When the doctors came by an hour later on their rounds, I told them about it and they reminded me how good it is that I brought Moriah in so early instead of waiting for many such long episodes. Apparently, lots of parents wait months. Her chances of recovery are made better because we got her care so quickly. That is a grace, that I persisted in following my instincts and making a late-night phone call to a wise pediatrician who directed us to the ER.

We're working to move Moriah's daily injection earlier and earlier each day--today, I will give it at 3:15pm. Best to give it in the morning, as it's going to make Moriah "highly irritable" and difficult to console, and wisdom says it's better to have a crying child during the day than at night. So we're working towards a morning dose. Today, though, Moriah is still her sunny self. She's really begun rolling over on her own quite frequenly now, and in the last couple days of working with her here, I've seen a marked improvement in her ability to reach for a toy while on her belly. So she's still making developmental progress, even as we are hospitalized, and that is encouraging and gives me a sense of purpose and a feeling that perhaps something is (though it really isn't, I know) in my control.

As for me, I'm mostly busy tending to Moriah--washing her bibs in the sink, rewashing her hair (thank you, Michelle, for the olive oil idea--it worked perfectly to get the glue off her head!). Today I strapped her in the Baby Bjorn and took her on a long walk through the hallways. We've done a lot of "play time" today (read: therapy). I've had some time to listen to an online teaching on suffering. I've read some emails and responded to some and fed Moriah's (growing...the ACTH will make her hungrier) appetite.

I'm sad about a lot of things today. I'm mostly sad to think that we're going to lose our sunny Moriah during the next month, trading her personality for a chance at a cure. I pray to God it works, and that He returns her to us in time, well and happy again.

the dirty deed is done

So I asked the nurse today if I could administer Moriah's first ACTH shot. I decided I would rather not watch today, and try tomorrow...too much anxious anticipation in between. I practiced on an orange a few times, and when the vial was finally delivered this evening, was able to do what needed to be done. Jabbed the needle into her thigh and pushed the hormone into her body. The nurse told me my hand was steady and I didn't seem nervous at all; I'm not sure how I exuded anything other than grief. I figure someday I'm going to break down and have a good cry about the events of this week, but somehow, I just can't right now. Just keep meeting moments as they come and asking Jesus to heal our little girl, to make her well. Putting a needle into my daughter's body doesn't bother me nearly as much as injecting her with something that might harm her, could possibly heal her. She will either be totally better, or not better and needing to try another medication, or harmed in the process, or... As my friend said to me this evening, we wouldn't accept such odds from a car mechanic ("well, your brakes might be fixed"). That, at least, made me laugh. But someday, I swear, I'm going to cry about it all.

waking up

How did you wake up this morning?

This morning, I woke up at 5:15 to Moriah fussing. As soon as I heard it, I knew she was having a seizure because she never cries out in the morning when she wakes. She starts kicking her legs (or thumping them against her bed, which is the reason we've taken to calling her "Thumper") and babbling happily. Like me, she tends to be a cheery morning person. But this morning, she was crying and whining, and as I got to her cribside, I could see she was seizing. Her little arms were thrusting straight out, her legs folding up to her chest. I picked her up and sat on the edge of my fold-out chair-bed, rocking her and singing. The song that came to mind this morning was, "I've Got Peace Like a River," and I sang it over and over through the five minute episode, again willing myself not to panic, not to cry, not to be anxious.

After I had settled Moriah again, I wondered about how my friends and family were awakened this morning. By alarm clocks that begin the mad morning rush that is school and work. By the padding of little feet on the bedroom floor and the toddler crawling into her parent's bed. By the iPhone playing a funky tune. Or a spouse. Or the smell of coffee. Typical mornings, and I wondered how many had the time as I did this morning to hold and rock their little ones, to pause and sing and welcome peace. These moments are the graces and the gifts in the horror.

When I checked my email this morning I received yet another email from Compassion International, updating our family about one of the children we sponsor, who lives in Haiti. Little Jeffte. He is not yet found, but the organization was writing to let us know that many of the children who are sponsored were injured and even dead. We await news on Jeffte, who is one of many connections we have to Haiti. And it made me wonder...how did Jeffte wake up this morning? And his family? Did they wake up at all?

I have a lot of questions in times like this--times when my family suffers, when thousands of people suffer. When children get sick, are injured, or die. I ask the same questions over and over, and there are never any answers, nothing that satisfies. I get angry for the lack of answers, angry at the injustice of all the suffering, angry that some seem to be chosen again and again (oh, people of Haiti!) to suffer neglect and pain. I want to be a person of faith, but I am so often a doubter. I want to be one who embraces mystery, but instead I wish the mysteries that affect my life and the lives of those I love were more comprehensible. I want to be a pilgrim of courage when all goes dark, having seen enough of light to trust I will see it again, but instead, I grope for a wick and try to light fires with my own understanding. I want to be a person who trusts always that we here on this earth are ultimately loved by a great spiritual Lover, but I am like little Moriah in my pain, unable to remember when I'm seized with fear that I am in the arms of a great God-parent, secure.

I want to be sure-of-faith. But instead, I wake up this morning to a baby seizing, the news of aftershocks in Haiti, and a heartbreaking email about Jeffte. I sing about having peace-like-a-river, not as one who feels the peace, but as one crying out for peace. Asking again for God to meet me here, to help my unbelief, to wake up my awareness of Spirit-presence. O loving Father, wake me up again!

in-between

It has been a busy day here. I always marvel at that...how a day in the hospital can fill so quickly. So many doctors, nurses, specialists, and others (a social worker, a post-hospital case manager, the cleaning staff, the laundry staff...) in and out throughout the day. I was able to catch a one-hour nap around lunchtime, which was much-needed. And I had a wonderful visitor this morning...Dr. Trenor, Orilus' transplant doctor, who came and literally hung out with me for an hour, chatting and keeping me company. He can't believe we're here again, but his usual calm and cheery demeanor did much to remind me that we came through Orilus' bone marrow transplant, and will come through this, too.

This afternoon Moriah's 28-or-so head wires were removed. No more hat! This was surprising news to me...yesterday, I had been told they would remain for some time. But it's so nice to see Moriah and her hair (which didn't come off). I gave Moriah a bath in one of those pink hospital basins (hilarious, since she doesn't fit really) and am realizing that it will take a few baths before the glue comes off. But Moriah is now wire-, lead-, and IV-free!

The next 18 hours or so are in-between. The seizure monitoring is behind us (I can dash guilt-free to the kitchen down the hall for a cup of coffee), the start of Moriah's hormone therapy (called ACTH) is ahead of us. This evening I've got to start injecting oranges and learning how to use urine and poop test sticks, as we'll need to give the injections at home and test Moriah's poop for blood and her urine for sugars. The nurse told me to expect that Moriah will become more irritable once we begin the ACTH--harder to settle, less able to sleep. So this quiet hour, with Moriah fast asleep after her bathtime, seems like the calm before the storm.

I really do want to say thanks to so many for reading our blog, checking our Facebook status, writing posts, and sending emails. It's very difficult for me to leave the floor (as Moriah should not be left unattended as a baby alone in her room), and I expect to be "stuck" here for the next few days; your writings help me to feel I'm not forgotten, and to remember that Moriah is surrounded with prayer and love. We are praying that Moriah will respond well to the ACTH, and that the therapy will resolve her seizure disorder completely and forever, without ill effect. Thank you for praying and hoping with us.

Moriah this morning

sad news today

During rounds this morning, Moriah's neurologist broke the bad news: Moriah's startling episodes are definitely seizures. Her EEG shows definite seizure pattern in keeping with a serious seizure disorder called "infantile spasms." Apparently Down syndrome can cause this disorder (much as it causes heart defects); like the heart defect, though, doctors don't understand why DS causes seizures, only that it does.

There is good news: apparently, kids with DS tend to respond better to treatment, and can sometimes recover from the disorder without any damage to their brains or development.

The treatment is rather aggressive doses of a hormone given by injection in the thigh. The effects of the treatment are many, and there are risks. But the treatment is Moriah's best chance for a full recovery; as the doctor put it this morning, he knows we are a family who has the resolve to be intentional and purposeful with our children's medical treatment. In other words: we have strong enough stomachs.

In the next two days, the doctors are running many tests to be sure that Moriah is healthy prior to starting the hormone/steroid injections. She has to be TB-free, infection-free, and they need a lot of baseline numbers (liver enzymes, urine sugars, etc) for later comparisons. If Moriah is deemed healthy enough, they will begin the injections on Wednesday (I presume). They'll continue the daily injection for seven days while they continue to monitor Moriah in so many ways, including, it seems, with the EEG (Moriah continues to be hooked up via 28 leads on her head and they're going to leave them there throughout our stay). If Moriah does well, and seems to be responding, they will send us home to continue the daily injections at home, as Moriah is monitored by a visiting nurse. The biggest risk factor, it seems, is a weakened immune system, a result of the treatment.

I'd like to say we are trying to process today's news, but mostly I feel shock and am aware that my brain is unable to grasp what has been told to me today. Before Moriah was born, I thought a child with special needs would never happen to us. Then, I thought her heart surgery would never happen. Yesterday, even as I tried to tell myself she was probably having seizures, I just really couldn't believe it, and today, I still can't. I want to tell myself that hse is going to be okay, that the seizures won't do damage to her brain, won't cause her to regress developmentally. But yesterday, I told myself she couldn't possibly have seizures, and that turned out not to be true. And I wonder: what is the difference between faith and wishful thinking?

Mostly my faith today is reduced to this: I can have no assurance of what life will hold for me, and worse, for my children. I can only say that I believe God is here, and is providing. Today we remembered again the moment in which we gave Moriah her name, a name of "provision," a trust that God would provide what we would need as we needed it. Today, I needed coffee when I woke up, and the nurse not only brought me some, he bought me some--from the Au Bon Pain downstairs. I needed company, and was grateful to have my mom with me for almost the entire day. I needed prayer, and had oppportunities four times today to pray with others. This is faith for me today, a provision that reaches through the mind-fog, surprises and sustains.

Moriah's half birthday video

(sorry to those of you who may have seen the initial post, which was the wrong video and, unfortunately, the video of Moriah's "startling" I took last night for the doctors to see...I'm so sorry if I scared anyone, as it is not a fun video to watch)

What I meant to post was this...

Wednesday was Moriah's six-month birthday. After a fussy afternoon, she was finally settled by Orilus (who's becoming quite the Moriah-pro!). She fell asleep on his chest on the loveseat in the Winchell's living room. A few minutes later, I looked up from helping Jackson with his homework to see Orilus also asleep (don't worry, I kept checking throughout their nap to be sure Moriah wasn't going to fall off). Orilus was even snoring (being a sixth grader and a brother to a six-month-old can be tiring work, let me tell you!). :) It was the cutest thing. While Moriah's sleeping here at the hospital, thought I'd post the video for you all to enjoy.

in the hospital again

Since Thursday, Moriah has had a handful of episodes of "startling." She throws out her arms, pulls up her legs, and looks absolutely wide-eyed scared. The starts are brief (just a second long), but within a five-minute episode, she was starting upwards of 20 times. At first, the pediatrician thought it may be something simple (a sleeping issue), but last night after 2 such 5-minute episodes within a few hours, I called again and was directed to go to the Children's ER immediately. Which I did, at about 10:30 pm.

After a long, long night of nearly no sleep, Moriah was admitted this morning to a neurology floor. The fear is that she is having "infantile spasms" or baby seizures. These apparently can be more common in kids with Down syndrome, however, the doctors are not yet sure if this is what she has (perhaps, one hypothesized, it has more to do with her reflux?). So we were moved to a private room for seizure patients, one in which they can hook Moriah up to a bunch of leads (check out the photos...the leads are covered by the stocking, which extends as you can see for nearly a yard and connects to a computer in a small black bag) and watch her on video camera (suspended from the ceiling). They're going to follow Moriah's brain activity in this way for about 24 hours; based on the results, they may determine further tests (an MRI was mentioned) may be needed.

It's hard to say what we're feeling today. Jason is here with me; he skipped church this morning to join me and to give us both a few hours together before the boys come to see their sister this afternoon. I think mostly we feel shock. How is it that this is happening again?! We're not sure, and it's horrifying and all-too-familiar (this living in a hospital room scenario).

I'm not even sure what to ask you for pray for. I'd like to ask that Moriah not have seizures, though I would rather have some answer than none. I'd like to ask that Moriah have another episode within this 24 hours, so doctors can really tell what's going on, but I don't want her to go through another episode, which makes her cry and exhausts her. I'd like to ask for peace, but know that when I'm in shock (as I feel I am today), "peace" is really a false sense of denial and keeping-the-crazy-at-bay.

So friends, pray as you will. We want our little girl to be okay, but we're not sure anymore what "okay" really means, and that is the scariest thing of all.

good news

So much good news in the last week!

Our house in Lynn finally closed a week ago. We left the closing sad to be moving on from a huge chapter in our lives (the Lynn chapter was 11-1/2 years of our 12-1/2 year marriage), but also feeling free to move forward.

Yesterday, we signed the P&S on our future home here in West Bridgewater, a cute and sunny bungalow a mile from Jason's parents' home. We're hoping to close January 22nd! The seller bought the house to flip it, and it is completely renovated, inside and out, and nearly finished (I walked through it again today). We're so grateful to have found this house, as it will mark the first time we haven't adopted a "house project" in the purchase of a home, and at this stage in the life of our family, we are needing the freedom to attend to our children more, and our property less. It is a provision.

We've been busy in the last week, too, making new friends, and this is good, too. The boys are now receiving phone calls from friends at their new school (amused sigh). Jason and I were over two different houses for dinner last week, meeting over nine couples in those two visits. We have dinner plans with another family this weekend, while Orilus joins forty other middle schoolers from church at "Snow Camp" in New Hampshire. And even little Moriah is making friends--a little boy from the Down syndrome support group we've joined, and two girls in her mom-and-baby swim class this morning. We are so thankful to be so well-provided for in potential friendships.

There continues to be, as in your lives, much that is concerning. We need jobs that are closer to our new home. I would like to do some work this spring, even, but can't forsee commuting to Lynn with Jason and leaving our children parent-less before and after school. Orilus made a visit to Mass General yesterday for symptoms that are mystifying to us, and to his hematologist. So far, his blood counts look good, but he continues to complain of back pain and other aches daily and we are worried for him. We're waiting for more test results this week as the doctors try to figure out if his pains are from sickle cell damage, some kind of post-transplant "fritz," an autoimmune issue (his immune system still just 3-1/2 years old), or just plain growing pains.

Somehow, though, I have an increasing sense of faith. Faith that God might, after all, be paying attention to us. Faith that we might have been on to something when we gave Moriah her name as a reminder that God provides. The cliche says that when God closes a door, He opens a window. Hm. But those who told me so forgot to mention that sometimes the window only opens after you've sat in a stuffy, dark house for a long time, thinking you're alone and there's no way out. This week, though, I've found a window and through it, hope rising like a warming winter sun.

happy new year

At 4 am this morning I was in Mom and Dad Winchell's "back room," sitting near the hot coal stove to feed Moriah and watching revellers from around the world welcome the New Year. To think that almost six months have gone by since Moriah's birth, to anticipate this year as the year in which she will turn one year old...to make sense of the past and feel hope for the future, these are no small things.

I have had a very hard time in the last few months understanding why so many difficult things have happened to us. Why were we thrust back into the world of Children's Hospital, after "paying our dues" during Orilus' transplant three years ago? Why was Moriah born with a diagnosis that could cause her sickness, complications, and a decreased life span? Why, when I finally had begun to trust that I could, after all, open myself up to the scary world of "baby-hood," were my worst fears realized in a child with special needs? Why was I asked to give up so much--an on-time return from maternity leave, a happy delivery and postpartum recovery, a calm summer at home with my sons, an entire life in Lynn?

So much pain, and in the final analysis, I am finding that analysis is really little help, and no comfort.

Mostly I have passed the last months stringing one hour after another, like an amateur jewelry maker unsure if the finished piece will ever be finished, or for that matter, a piece at all. In the process, we have made many sudden and instincitve decisions. We knew we needed to retreat to a place of healing, and made a strange pilgrimage to Jason's parent's basement and pull-out couch. (Our house in Lynn finally closed this past week!). Others might marvel that cramped quarters could bring anything other than frustration, but we have found joy here. A new rhythm is emerging, one that for me includes sending the boys off to a school that delights them, moving Moriah's body in ways I've been told will improve her muscle tone, returning to workouts at a local YMCA, and looking for part-time work for the spring. Rhythms, and beaded time, passing. And my favorite Christmas gift this year--a necklace my dear friend Val gave me with a South African symbol that means "hope"--has been both an ironic mocking ("Hope in all of THIS?! You've got to be kidding?!") and a quiet strength ("Next hour, next day. Begin again.").

And mostly, I find that hope returns, even after days when I am sure it does not exist anymore, cannot possibly exist. Moriah turns over on her own (as she did twice yesterday). Jackson and Orilus take off on their bicycles for the town skating pond. Jason grabs me in a bear hug after his long commute. Dad Winchell discusses a favorite book of mine and pours my coffee. Mom Winchell tells me a story for her own motherhood that encourages me to pray and to wait. The doctor tells me that Moriah is thriving, and Orilus and Jackson's teachers tell me the same. And I feel my own heart yearn to thrive, yearn to break free of all the sadness, and sometimes, it does just that, and I am full of gratitude, and rejoice.

Two weeks ago in church my husband was surprised when an elderly woman he knew from his childhood approached me with a great big hug, tears in her eyes, and a specific word of encouragement. I can't tell you how comforting it is even to be called by name, now that I live in a town where I have yet to make good friends and am so little known. But what was more comforting was to know that her words were true, and tested, having survived her own heartache and truly awful suffering. "There is hope," she said. And I realized how sweet these words were, coming from someone who had weathered so much. And how really, they were some of the few words I trusted in these last months. And I thought, someday, I want to be that woman, the one who suffers and hopes. The one who can be trusted, because she has survived, and gone on to thrive. The one who counts her scars, knows they are not as deep as they could have been, and heals the hurt in others by virtue of her own weakness and imperfection.

Someone who can welcome a New Year. Welcome it for its scary unknowns, and certain joys. And understand that the welcoming is a radical act, a faith. A hope.