And the countdown to the first day of school is on. The boys go back on Wednesday and we have just 48 hours left of their summer.
After a FULL weekend we are spending our last two days of summer...at appointments. I know, very sad. Today we have 3 appointments--1 visiting nurse, 1 visiting early intervention development specialist, 1 school meeting (for the boys, not Moriah). Tuesday we also have 3 appointments--all in Boston, at 3 different places. Moriah is seeing her cardiologist at Children's, which we're really looking forward to; we want to get an update on her progress and (if we can) a better sense of when her surgery may be. Then we're back down the river to MGH to the cystic fibrosis clinic in front of the hospital for a re-do of the previously-not-enough-sweat test. AND...since Jimmy Fund failed miserably at getting any blood from Orilus during our annual visit there over a week ago, we asked that they stop digging around in his veins after 4 attempts over 2 hours and instead allow us to go to his hematologist at Mass General, who usually has a much easier time of it. So we have to get into yet ANOTHER building in Boston for that on Tuesday, too. Whew.
So it's back to school in 48 hours, by way of a few hospitals. :) Backpacks are already packed with new school supplies. Book reports are in binders. Uniforms are laundered. We're almost, almost ready to go. Fifth and sixth grade (yikes...enough to make me cry), here they come...
Sunday, August 30, 2009
Friday, August 28, 2009
some days are better than others
It's just a fact of life, right?
We had many good days this week...my mom and grandma came to visit me this week, and we had a lovely afternoon. The boys and Jason worked hard at helping my sister to move into her new house. The garage door is now scraped and ready for priming (this has been the boys' pet project in the last 2 weeks...they are saving money for a Wii and doing all they can to earn extra money). All seemed to be well...and then Wednesday came, and Wednesday brought fresh tears. Partly it was my 6-week check-up; I left the Birth Center and returned to my much-loved ob/gyn, since I will never be able to birth at the Center now that I've had a C-section and have had so many postpartum complications for which I was wishing I had a doctor and not a midwife. It was a bit like being in a time warp, sitting in the room again and looking at the calendar I had watched for many of those first months of my pregnancy (thinking Moriah's birth-day would never arrive)...and then to see it was the end of August already, and to try to grasp where the summer had gone, and all that had happened...it was overwhelming.
I watched an Oprah rerun this week (have been DVR-ing her, too, for those late-night feedings)--a show on "survivors." One man had survived a plane wreck, and was telling of his experience. Oprah asked him if he had a whole new life, a whole new outlook, a new spirituality. He seemed at first unsure how to answer the question, and then finally said something like, "of course." Oprah commented that after doing so many interviews, she's found that those who survive best are those who do not try to go back to the life they had before the "wreck," but those who get up from the wreck and embrace a new life and a new existence.
This is my experience of this week--struggling not to try to reach back to the "way things were" or the "way I had thought things would be" and instead continuing to trust that a new life is ahead, and to walk into it.
It reminds me of an excerpt from a work by Barbara Kingsolver, sent to me by a dear friend on July 1st, 12 days before Moriah was born:
"Every one of us is called upon, probably many times, to start a new life. A frightening diagnosis, a marriage, a move, loss of a job...And onward full tilt we go, pitched and wrecked and absurdly resolute, driven in spite of everything to make good on a new shore. To be hopeful, to embrace one possibility after another--that is surely the basic instinct...Crying out High tide! Time to move out into the glorious debris. Time to take this life for what it is."
Sometimes, moving into the glorious debris seems like no big deal. Moriah is Moriah, and we love her and are so glad she's here. And other times, her diagnosis seems overwhelming. On the one hand, we see Moriah as a great gift, and don't want to complain about the "packaging" with which she's arrived. And on the other, we see her as a puzzle piece and are not quite sure how she "fits" into the life we've had, and how other pieces in our life will need to move, or be discarded, or be re-shaped, to fit her.
So this week we find ourselves praying again for the grace to HOPE. Kingsolver calls it the basic instinct. My spirituality tells me it is the essence of faith. And yet in the last two days, I feel more like the man in the Scriptures who cried, "Teacher, I do believe! Help my unbelief!" To hope and despair, to pray with faith and to hold grave doubt--these are the paradoxes I find within myself this week.
Please do pray for Moriah as the GI doctor changed her formula again this week (from Alimentum to Neocate)--causing a lot of vomitting in the process. We are frustrated to be back at this stage, are trying in vain to get him on the phone, and hoping for direction, and quickly.
In other news: the boys' five year adoption anniversary was this past week. My heart fills with so much emotion just to think of that, to recall the day we brought them to the States. I remember that day with such acute detail, and so many of the days since. Someone asked me recently (an awful question, I thought later, but was so surprised by it at the time that I couldn't well respond) if having Moriah seemed better/different, since she is a "blood" relative. I can't explain how much that is not the case. I never got to know my sons at infancy, and holding Moriah sometimes, I wish for that, and am so grieved I wasn't there at their births. But I have rocked them--Orilus, at age 10, suffering from a bad night after chemo, rocking in the chair on the isolation floor--one of my most poignant memories of early motherhood. Or Jackson, so scared to stay in his own bedroom at night when he first arrived, and I would sleep on their floor on a mattress until he fell asleep. And I have dried their many tears, and warmed their food, and hugged them tight, and lotioned their bodies...many of the things I do now, for Moriah. I wondered about this, if birthing Moriah would cause me to feel differently about her than I do about our sons. It hasn't. In the end, I think that family is a choice--I choose to stay married every day, and choose to love my kids, though imperfectly and often badly.
The boys begin school on Wednesday and we have many small things to do between now and then--a back-to-school cookout here at the house with their friends, the packing of their school bags with their new binders and supplies, the washing of uniforms, the finishing of book reports (Jackson has just 2 paragraphs left to write and our summer reading ventures are finished)...and, I hope, some time to be family and to enjoy these last days of a summer I still feel like I missed entirely.
Hoping for a new season ahead, and a lowering of the "tide"...
We had many good days this week...my mom and grandma came to visit me this week, and we had a lovely afternoon. The boys and Jason worked hard at helping my sister to move into her new house. The garage door is now scraped and ready for priming (this has been the boys' pet project in the last 2 weeks...they are saving money for a Wii and doing all they can to earn extra money). All seemed to be well...and then Wednesday came, and Wednesday brought fresh tears. Partly it was my 6-week check-up; I left the Birth Center and returned to my much-loved ob/gyn, since I will never be able to birth at the Center now that I've had a C-section and have had so many postpartum complications for which I was wishing I had a doctor and not a midwife. It was a bit like being in a time warp, sitting in the room again and looking at the calendar I had watched for many of those first months of my pregnancy (thinking Moriah's birth-day would never arrive)...and then to see it was the end of August already, and to try to grasp where the summer had gone, and all that had happened...it was overwhelming.
I watched an Oprah rerun this week (have been DVR-ing her, too, for those late-night feedings)--a show on "survivors." One man had survived a plane wreck, and was telling of his experience. Oprah asked him if he had a whole new life, a whole new outlook, a new spirituality. He seemed at first unsure how to answer the question, and then finally said something like, "of course." Oprah commented that after doing so many interviews, she's found that those who survive best are those who do not try to go back to the life they had before the "wreck," but those who get up from the wreck and embrace a new life and a new existence.
This is my experience of this week--struggling not to try to reach back to the "way things were" or the "way I had thought things would be" and instead continuing to trust that a new life is ahead, and to walk into it.
It reminds me of an excerpt from a work by Barbara Kingsolver, sent to me by a dear friend on July 1st, 12 days before Moriah was born:
"Every one of us is called upon, probably many times, to start a new life. A frightening diagnosis, a marriage, a move, loss of a job...And onward full tilt we go, pitched and wrecked and absurdly resolute, driven in spite of everything to make good on a new shore. To be hopeful, to embrace one possibility after another--that is surely the basic instinct...Crying out High tide! Time to move out into the glorious debris. Time to take this life for what it is."
Sometimes, moving into the glorious debris seems like no big deal. Moriah is Moriah, and we love her and are so glad she's here. And other times, her diagnosis seems overwhelming. On the one hand, we see Moriah as a great gift, and don't want to complain about the "packaging" with which she's arrived. And on the other, we see her as a puzzle piece and are not quite sure how she "fits" into the life we've had, and how other pieces in our life will need to move, or be discarded, or be re-shaped, to fit her.
So this week we find ourselves praying again for the grace to HOPE. Kingsolver calls it the basic instinct. My spirituality tells me it is the essence of faith. And yet in the last two days, I feel more like the man in the Scriptures who cried, "Teacher, I do believe! Help my unbelief!" To hope and despair, to pray with faith and to hold grave doubt--these are the paradoxes I find within myself this week.
Please do pray for Moriah as the GI doctor changed her formula again this week (from Alimentum to Neocate)--causing a lot of vomitting in the process. We are frustrated to be back at this stage, are trying in vain to get him on the phone, and hoping for direction, and quickly.
In other news: the boys' five year adoption anniversary was this past week. My heart fills with so much emotion just to think of that, to recall the day we brought them to the States. I remember that day with such acute detail, and so many of the days since. Someone asked me recently (an awful question, I thought later, but was so surprised by it at the time that I couldn't well respond) if having Moriah seemed better/different, since she is a "blood" relative. I can't explain how much that is not the case. I never got to know my sons at infancy, and holding Moriah sometimes, I wish for that, and am so grieved I wasn't there at their births. But I have rocked them--Orilus, at age 10, suffering from a bad night after chemo, rocking in the chair on the isolation floor--one of my most poignant memories of early motherhood. Or Jackson, so scared to stay in his own bedroom at night when he first arrived, and I would sleep on their floor on a mattress until he fell asleep. And I have dried their many tears, and warmed their food, and hugged them tight, and lotioned their bodies...many of the things I do now, for Moriah. I wondered about this, if birthing Moriah would cause me to feel differently about her than I do about our sons. It hasn't. In the end, I think that family is a choice--I choose to stay married every day, and choose to love my kids, though imperfectly and often badly.
The boys begin school on Wednesday and we have many small things to do between now and then--a back-to-school cookout here at the house with their friends, the packing of their school bags with their new binders and supplies, the washing of uniforms, the finishing of book reports (Jackson has just 2 paragraphs left to write and our summer reading ventures are finished)...and, I hope, some time to be family and to enjoy these last days of a summer I still feel like I missed entirely.
Hoping for a new season ahead, and a lowering of the "tide"...
Sunday, August 23, 2009
home from Maine
We had QUITE an adventurous weekend! At least, it seemed like an adventure, packing up all three kids (still trying to figure out how we became a family of 5 and got ourselves outnumbered...) and heading off for Maine on Friday evening (this after a morning at Jimmy Fund Clinic with Orilus and a pediatrician's appointment in the afternoon for Moriah...whew! Both went well--Orilus is doing GREAT and they are psyched about his progress as the first successful sickle cell bone marrow transplant in Boston, and Moriah is gaining weight--over 8 pounds now!--and other than a weepy eye, is looking and feeling good). Our minivan wasn't THAT full of stuff, all things considered, and we were so blessed to stay with some good friends, who are directors of a faith-based girls' camp. They generously allowed us to stay in the Infirmary cabin, which had 2 bedrooms, 1-1/2 bathrooms, a kitchenette...all of which, it turns out, was WAY better than a hotel room for a family of 5 and a nearly 6-week-old baby. We were so delighted to see friends this weekend, to celebrate with our housemate as she got married, and to feel generally like we were well enough to travel a bit (though I'm still quite sore and moving slowly, I realized). Two whole nights away from home, all of us together, and we are happy and well.
The boys are eating leftovers for supper (as my sister Debby would say, "diner's choice night" here at the Winchell house), Moriah is beginning to fuss in her bassinet...and I'm off to start another feeding, as Jason scrambles to shut windows as it begins to pour rain...
The boys are eating leftovers for supper (as my sister Debby would say, "diner's choice night" here at the Winchell house), Moriah is beginning to fuss in her bassinet...and I'm off to start another feeding, as Jason scrambles to shut windows as it begins to pour rain...
Saturday, August 15, 2009
one month
We celebrated Moriah's one month birthday this week--a homemade ice cream cake, an ultrasound appointment, and a sky dive all seemed fitting tributes in their own way.
I remembered I knew how to make ice cream cakes this week. In high school, I worked at TCBY (there's a fun piece of trivia for you)--an awesome job for a complete candy-addict (which I continue to be...I still dream of those entire boxes of candy lining the shelves of Tic-bee's backroom...mmmmm). It was strange to remember this as some out-of-the-blue lightbulb "I-can-do-that" jolt. Since Moriah's been born I've been having a lot of those. Some are entirely random--ice cream cake making, driving the minivan for the first time in three weeks, going back-to-school shopping for the boys. Other times, I have these "I've been there" or "I can do that" jolts that are much more profound. Yesterday, when explaining to a friend that no, Moriah's birth has not "shaken" my faith, as asking God "why" and being royally pissed off at him is a been-there-done-that experience a few years old. Or knowing where to get my photo ID for Children's Hospital. Or making clear choices about when to cry, and for how long...and then turning it off, picking up, and moving forward. In general, I find I'm both returning to my "normal" life (when normal does not include working full-time and studying for a doctoral program, which feels still strange) AND returning to the tried-and-true strategies I've used before to survive (or thrive) in the midst of major life transitions (though I still have yet to journal, as I can't find the words, and am anxiously awaiting my 6-week doctor's visit so I can return to my morning swims). A morning cup of coffee helps. When I have quiet moments, prayer and singing helps. Asking for help helps. Reading novels. Watching the boys play basketball in the driveway. Cooking. TLC and Oprah reruns. These are all helping.
The ultrasound appointment was a marker, too. It marked her one-month birthday week, though the doctor was not aware of it, and it marked one of many, many times when we have been (and will be) confronted by the word "normal" throughout Moriah's life. As in, her upper GI looked "normal" this week. And yet, in the world of special needs, "normal" is not a word we use--apparently (so my friends of children with special needs and my reading tells me), we use "typical," as in "Moriah is gaining weight more slowly than a typical child." Jason and I have talked a lot about this...about what our own expectations of "normal" were in anticipation of her birth, and how they are changing, and will change. On the one hand, we've always given lip service to the idea that the way we chose to start a family--by adopting before we tried for biological children--was just as "risky" as birthing. When people have marveled at how we chose to adopt, not as a second choice, but as a first choice, and that we chose to adopt a child with medical needs, we've always said, "well, yes, but when we birth a child, we could birth a child with medical needs, too." And yet. And yet somehow we didn't really think it would happen to us. Maybe what we really thought was that this was our chance to have a child without a background of baggage...ironic, given that we actually have "medical history" to write out at each doctor's visit for Moriah, even though she's only a month old. Maybe what our boys' story, and Moriah's story, are teaching us, for real this time, is that all of us ARE the "norm"--and the norm is baggage, and history, and issues, and lots of things that need lots of love, and care. We're still feeling the sadness of that on Moriah's behalf on occasion, but mostly, we're realizing how much we needed our idea of "normal" challenged and re-framed.
And the jump. Today around 3:00 pm my husband was literally falling from the sky, having jumped from a perfectly good airplane with a guy strapped to his back. Before he got into this itsy-bitsy plane (seriously, you couldn't have paid me to GET in that thing, let alone jump OUT of it), I commented to him how just a couple weeks ago, we were leaving the NICU, and here we were, outside in the sunshine (well, Moriah and I under a tarp, but still...) and doing something new, and even (dare I say it?) FUN. Jason's dad took him and his 2 brothers jumping today and they had a great time...and I had a great time, just being outside, and watching the boys play with their cousins, and feeling like I had the first summer day I've had all summer, sweating and calm with Moriah in my arms for hours. It was a crazy thing to do, crazier still, it seemed to me, so soon after Moriah's birth, but the date had been set, and jumping has been on Jason's "bucket list" since I met him (I think he was always disappointed his military years didn't afford him the opportunity) and so I was so happy to go, and to see him get to do something for himself, especially after the way he has done everything around here for weeks as Moriah and I have recovered.
So Moriah's been with us--or, out of me, more appropriately--one month. I feel like we've lived a few months in that time, honestly...so much has happened I'm not sure how it fit into 30-some days. But there is grace again, in the form of a cold piece of cake, a "normal" ultrasound, and a fall from the sky. Reminding us that this is life--in all its craziness--and that we can find a mooring, somewhere between the seriousness and the fun, the death-defying and the death-come-knocking. A beloved mentor from my college years called this week and asked me, basically, what has moored me in this month. My faith, certainly, which lends me perspective even when my emotions are raw or overdrawn. And after that, I would say, the love of my husband which has overwhelmed me again and again these last weeks. After that, quiet moments with Moriah, when I hold her and feel her tiny, hole-y heart beating near mine, and realize again the gift I have been given, and its fragility.
I remembered I knew how to make ice cream cakes this week. In high school, I worked at TCBY (there's a fun piece of trivia for you)--an awesome job for a complete candy-addict (which I continue to be...I still dream of those entire boxes of candy lining the shelves of Tic-bee's backroom...mmmmm). It was strange to remember this as some out-of-the-blue lightbulb "I-can-do-that" jolt. Since Moriah's been born I've been having a lot of those. Some are entirely random--ice cream cake making, driving the minivan for the first time in three weeks, going back-to-school shopping for the boys. Other times, I have these "I've been there" or "I can do that" jolts that are much more profound. Yesterday, when explaining to a friend that no, Moriah's birth has not "shaken" my faith, as asking God "why" and being royally pissed off at him is a been-there-done-that experience a few years old. Or knowing where to get my photo ID for Children's Hospital. Or making clear choices about when to cry, and for how long...and then turning it off, picking up, and moving forward. In general, I find I'm both returning to my "normal" life (when normal does not include working full-time and studying for a doctoral program, which feels still strange) AND returning to the tried-and-true strategies I've used before to survive (or thrive) in the midst of major life transitions (though I still have yet to journal, as I can't find the words, and am anxiously awaiting my 6-week doctor's visit so I can return to my morning swims). A morning cup of coffee helps. When I have quiet moments, prayer and singing helps. Asking for help helps. Reading novels. Watching the boys play basketball in the driveway. Cooking. TLC and Oprah reruns. These are all helping.
The ultrasound appointment was a marker, too. It marked her one-month birthday week, though the doctor was not aware of it, and it marked one of many, many times when we have been (and will be) confronted by the word "normal" throughout Moriah's life. As in, her upper GI looked "normal" this week. And yet, in the world of special needs, "normal" is not a word we use--apparently (so my friends of children with special needs and my reading tells me), we use "typical," as in "Moriah is gaining weight more slowly than a typical child." Jason and I have talked a lot about this...about what our own expectations of "normal" were in anticipation of her birth, and how they are changing, and will change. On the one hand, we've always given lip service to the idea that the way we chose to start a family--by adopting before we tried for biological children--was just as "risky" as birthing. When people have marveled at how we chose to adopt, not as a second choice, but as a first choice, and that we chose to adopt a child with medical needs, we've always said, "well, yes, but when we birth a child, we could birth a child with medical needs, too." And yet. And yet somehow we didn't really think it would happen to us. Maybe what we really thought was that this was our chance to have a child without a background of baggage...ironic, given that we actually have "medical history" to write out at each doctor's visit for Moriah, even though she's only a month old. Maybe what our boys' story, and Moriah's story, are teaching us, for real this time, is that all of us ARE the "norm"--and the norm is baggage, and history, and issues, and lots of things that need lots of love, and care. We're still feeling the sadness of that on Moriah's behalf on occasion, but mostly, we're realizing how much we needed our idea of "normal" challenged and re-framed.
And the jump. Today around 3:00 pm my husband was literally falling from the sky, having jumped from a perfectly good airplane with a guy strapped to his back. Before he got into this itsy-bitsy plane (seriously, you couldn't have paid me to GET in that thing, let alone jump OUT of it), I commented to him how just a couple weeks ago, we were leaving the NICU, and here we were, outside in the sunshine (well, Moriah and I under a tarp, but still...) and doing something new, and even (dare I say it?) FUN. Jason's dad took him and his 2 brothers jumping today and they had a great time...and I had a great time, just being outside, and watching the boys play with their cousins, and feeling like I had the first summer day I've had all summer, sweating and calm with Moriah in my arms for hours. It was a crazy thing to do, crazier still, it seemed to me, so soon after Moriah's birth, but the date had been set, and jumping has been on Jason's "bucket list" since I met him (I think he was always disappointed his military years didn't afford him the opportunity) and so I was so happy to go, and to see him get to do something for himself, especially after the way he has done everything around here for weeks as Moriah and I have recovered.
So Moriah's been with us--or, out of me, more appropriately--one month. I feel like we've lived a few months in that time, honestly...so much has happened I'm not sure how it fit into 30-some days. But there is grace again, in the form of a cold piece of cake, a "normal" ultrasound, and a fall from the sky. Reminding us that this is life--in all its craziness--and that we can find a mooring, somewhere between the seriousness and the fun, the death-defying and the death-come-knocking. A beloved mentor from my college years called this week and asked me, basically, what has moored me in this month. My faith, certainly, which lends me perspective even when my emotions are raw or overdrawn. And after that, I would say, the love of my husband which has overwhelmed me again and again these last weeks. After that, quiet moments with Moriah, when I hold her and feel her tiny, hole-y heart beating near mine, and realize again the gift I have been given, and its fragility.
Wednesday, August 12, 2009
Photo happy!
We continue to add photos of Moriah to a Snapfish album. It's at http://www2.snapfish.com/thumbnailshare/AlbumID=1036904020/a=1326343020_1326343020/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/
Feel free to see more of Moriah there!
Feel free to see more of Moriah there!
Monday, August 10, 2009
sleeping baby
I type this with Moriah sprawled across my lap, asleep.
The new week has brought with it new hope for fewer appointments. Our visiting nurse came today and was happy to see that Moriah had gained four ounces in less than a week...though I'm physically unable to breastfeed any longer (a source of sadness as I grappled with this reality over the weekend), Moriah is finally eating well with the dairy- and soy-free formula. It's like having a new child...she feeds so much more efficiently, keeps the food down, and has so many fewer choking/spit up episodes.
We have had more time to be a family of four this weekend, for which I was so grateful. Friday we brought Moriah to the final hour of the boys' soccer camp, and celebrated the close of another week with a "movie night" here at home together. And yesterday evening turned out to be precious...all of us gathered on our bed, passing Moriah around, talking and laughing together. These times are helping me to feel like life is assuming a new normal and that we won't always be inundated with appointments and medical demands. They reminded me, too, to just let Moriah be Moriah...not the baby with Down, or the baby with a heart defect. I've been reflecting a lot today on that--how to allow Moriah (not the doctors, or the research, or the medical books) to teach me who she is. Her name, after all, means "teaching place," and I'm finding again and again, when I'm overwhelmed, I hold her and feel peace again as I return to my rightful place as student, and she as teacher.
I am reading a lovely collection of essays written by moms who have children with Down Syndrome; one of them wrote, "Remember, the broken heart is in you, not your baby." And this perfectly describes what I feel by being with Moriah--my heart may be sad for her, or for us, at times, but she is not sad. She is not worried about her life. She is not concerned about her heart. She just IS, and who she is, I have only to discover, and that is will be a lovely and wonderful unfolding in my life.
So I'm grateful for today, when I have felt no sadness at all, and have shed (finally) no tears. How can I be sad when a little girl with deep blue eyes and jean overalls lies on my lap, and now stirs herself awake to look at me?
The new week has brought with it new hope for fewer appointments. Our visiting nurse came today and was happy to see that Moriah had gained four ounces in less than a week...though I'm physically unable to breastfeed any longer (a source of sadness as I grappled with this reality over the weekend), Moriah is finally eating well with the dairy- and soy-free formula. It's like having a new child...she feeds so much more efficiently, keeps the food down, and has so many fewer choking/spit up episodes.
We have had more time to be a family of four this weekend, for which I was so grateful. Friday we brought Moriah to the final hour of the boys' soccer camp, and celebrated the close of another week with a "movie night" here at home together. And yesterday evening turned out to be precious...all of us gathered on our bed, passing Moriah around, talking and laughing together. These times are helping me to feel like life is assuming a new normal and that we won't always be inundated with appointments and medical demands. They reminded me, too, to just let Moriah be Moriah...not the baby with Down, or the baby with a heart defect. I've been reflecting a lot today on that--how to allow Moriah (not the doctors, or the research, or the medical books) to teach me who she is. Her name, after all, means "teaching place," and I'm finding again and again, when I'm overwhelmed, I hold her and feel peace again as I return to my rightful place as student, and she as teacher.
I am reading a lovely collection of essays written by moms who have children with Down Syndrome; one of them wrote, "Remember, the broken heart is in you, not your baby." And this perfectly describes what I feel by being with Moriah--my heart may be sad for her, or for us, at times, but she is not sad. She is not worried about her life. She is not concerned about her heart. She just IS, and who she is, I have only to discover, and that is will be a lovely and wonderful unfolding in my life.
So I'm grateful for today, when I have felt no sadness at all, and have shed (finally) no tears. How can I be sad when a little girl with deep blue eyes and jean overalls lies on my lap, and now stirs herself awake to look at me?
Friday, August 7, 2009
ah, the end of the week
So we survived all appiontments this week...and somehow, have still more next...
Moriah's hips are great; the ultrasound today showed no problems there. Such a relief. And she has no eye or belly button infections. Whew.
Waiting still for further GI results and cystic fibrosis tests...
Today Orilus and Jackson have their last day of soccer camp ("World Cup Day")...we painted their faces with the flags of the country their teams were assigned (Brazil for Orilus, Italy for Jackson) and are leaving in a few moments to watch the end of their tournament. So far, Jackson's team (of which he is proudly captain) has been winning their games and holds first place, so we'll see what the final results of the afternoon will be. We're taking Moriah with us and hoping to make a bit of a "family outing" of the afternoon--our first FUN time together as a family of five since Moriah was born. Am so, so grateful for the gorgeous day today and the opportunity to all be together.
Now it's off to FUTBOL!
Moriah's hips are great; the ultrasound today showed no problems there. Such a relief. And she has no eye or belly button infections. Whew.
Waiting still for further GI results and cystic fibrosis tests...
Today Orilus and Jackson have their last day of soccer camp ("World Cup Day")...we painted their faces with the flags of the country their teams were assigned (Brazil for Orilus, Italy for Jackson) and are leaving in a few moments to watch the end of their tournament. So far, Jackson's team (of which he is proudly captain) has been winning their games and holds first place, so we'll see what the final results of the afternoon will be. We're taking Moriah with us and hoping to make a bit of a "family outing" of the afternoon--our first FUN time together as a family of five since Moriah was born. Am so, so grateful for the gorgeous day today and the opportunity to all be together.
Now it's off to FUTBOL!
Wednesday, August 5, 2009
Cardiology today
Ah, to stay out of the hospital for just one week...
I ended up back in the ER today; thankfully, all tests came back well. Apparently, I'm stressed. :) This is a bit frustrating to me, as I don't feel stressed (am generally happy and even-tempered this week), but apparently, my body says otherwise...appreciate your prayers as we continue to deal with my recovery even as we deal with Moriah's health.
Jason, then, bravely ventured without me to cardiology in Boston with Moriah. The appointment went well; she was weighed, measured, and endured a 13-point EKG (how they find 13 places on a little baby to stick 13 stickers is beyond me). Her EKG came back well; she's not showing any signs of heart failure yet. We've booked another appointment in three weeks (September 2nd)...Dr. Brown thinks that by then we'll be seeing signs of failure, and will have a better idea of when her surgery will be. It seems it's a fine balance--pushing her as far as she can in growth/weight while at the same time, not wanting to get to close to failure, either, before surgery. Pray for wisdom for the doctor as he helps us navigate that.
We are feeling a little overwhelmed this evening...hard to be apart from each other today, and sad to think about our little girl's heart gradually approaching failure in the coming months. There is no other choice except to live day-by-day, and to be grateful for all the little "normal" things we get to do. We had ourselves a good cry today for all the ways our life has changed, and all Moriah and our boys have to endure in the coming months.
We thought we'd have an appointment-free day tomorrow...ah, no such luck. Today Moriah's blocked tear duct looked infected AND her belly button isn't looking so hot, either...so it's back to the pediatrician for us tomorrow. And Friday we have 2 ultrasounds--an upper GI, and a hip (the doctor thought he heard a clicking there when we saw him 2 weeks ago).
Tonight, we're glad to be home, to have our bellies full of chicken and rice (thanks, Alexandra), and to have had some time this evening to have a "family meeting" with the boys, which served to right attitudes and to reaffirm love. A dear friend reminded us this week that those families that live like ours do--with medical issues, and day-to-day--also get to experience the fierce love of God in ways others do not, as we understand the gift of each day in ways others do not, and look for His presence out of a need that others do not have. Fierce love. We need it tonight.
I ended up back in the ER today; thankfully, all tests came back well. Apparently, I'm stressed. :) This is a bit frustrating to me, as I don't feel stressed (am generally happy and even-tempered this week), but apparently, my body says otherwise...appreciate your prayers as we continue to deal with my recovery even as we deal with Moriah's health.
Jason, then, bravely ventured without me to cardiology in Boston with Moriah. The appointment went well; she was weighed, measured, and endured a 13-point EKG (how they find 13 places on a little baby to stick 13 stickers is beyond me). Her EKG came back well; she's not showing any signs of heart failure yet. We've booked another appointment in three weeks (September 2nd)...Dr. Brown thinks that by then we'll be seeing signs of failure, and will have a better idea of when her surgery will be. It seems it's a fine balance--pushing her as far as she can in growth/weight while at the same time, not wanting to get to close to failure, either, before surgery. Pray for wisdom for the doctor as he helps us navigate that.
We are feeling a little overwhelmed this evening...hard to be apart from each other today, and sad to think about our little girl's heart gradually approaching failure in the coming months. There is no other choice except to live day-by-day, and to be grateful for all the little "normal" things we get to do. We had ourselves a good cry today for all the ways our life has changed, and all Moriah and our boys have to endure in the coming months.
We thought we'd have an appointment-free day tomorrow...ah, no such luck. Today Moriah's blocked tear duct looked infected AND her belly button isn't looking so hot, either...so it's back to the pediatrician for us tomorrow. And Friday we have 2 ultrasounds--an upper GI, and a hip (the doctor thought he heard a clicking there when we saw him 2 weeks ago).
Tonight, we're glad to be home, to have our bellies full of chicken and rice (thanks, Alexandra), and to have had some time this evening to have a "family meeting" with the boys, which served to right attitudes and to reaffirm love. A dear friend reminded us this week that those families that live like ours do--with medical issues, and day-to-day--also get to experience the fierce love of God in ways others do not, as we understand the gift of each day in ways others do not, and look for His presence out of a need that others do not have. Fierce love. We need it tonight.
Tuesday, August 4, 2009
GI Clinic
So I thought the GI Clinic this afternoon would be no big deal...actually, I sort of felt like our pediatrician was going overboard by scheduling the appointment. But it's a good thing we went. Apparenty Moriah is probably allergic to both milk and soy--which means, since I'm trying to get back to breastfeeding, I need to be milk and soy free (could our attempts at breastfeeding be made any more difficult?!) and in the meantime, Moriah needs to eat the really expensive milk and soy free formula. Fabulous.
Then the GI doc proceeds to tell us that Moriah's rectum is prolapsed, which could be an indication of her allergy (constipation)...or a symptom of...cystic fibrosis.
I laughed. I really did. To which the doctor said, "They say there is no humor in heaven. And here's why: when everything's fine, who needs humor?!" Which made me laugh more. To which he said, "You know, with some parents, I tell them their kid has just reflux, and it turns into an hour-long conversation; with you people, it's like you hardly blink when I mention a genetic disorder, and given your three weeks, I can understand why." So then of course we mentioned well, yeah, we've even been through a bone marrow transplant with our son...to which he said something about life having a lot of crap. Which of course I found even MORE hysterical, considering we were at the GI doctor's giving him Moriah's stool samples.
Oh my, friends. Pray. It just cannot be. We have to call tomorrow to get a "sweat test" scheduled. In the meantime, I missed our cheeseburger dinner tonight...and made two eggs instead. Oh, and I have to give up my latest craving--Reese's Pieces--because it has whey. Dude. What a day.
Then the GI doc proceeds to tell us that Moriah's rectum is prolapsed, which could be an indication of her allergy (constipation)...or a symptom of...cystic fibrosis.
I laughed. I really did. To which the doctor said, "They say there is no humor in heaven. And here's why: when everything's fine, who needs humor?!" Which made me laugh more. To which he said, "You know, with some parents, I tell them their kid has just reflux, and it turns into an hour-long conversation; with you people, it's like you hardly blink when I mention a genetic disorder, and given your three weeks, I can understand why." So then of course we mentioned well, yeah, we've even been through a bone marrow transplant with our son...to which he said something about life having a lot of crap. Which of course I found even MORE hysterical, considering we were at the GI doctor's giving him Moriah's stool samples.
Oh my, friends. Pray. It just cannot be. We have to call tomorrow to get a "sweat test" scheduled. In the meantime, I missed our cheeseburger dinner tonight...and made two eggs instead. Oh, and I have to give up my latest craving--Reese's Pieces--because it has whey. Dude. What a day.
Tuesday update
Moriah is doing GREAT! Yesterday our visiting nurse re-visited, at our request, and she is an angel...it's amazing what you can learn from more experienced mothers! :) She taught us a new way to burp Moriah (no need to pat/pound, simply lift her rib cage up and back...it really works!) and helped us to understand we were under-feeding Moriah (apparently, babies need 1/2 their baby weight in ounces...so if Moriah weighs 7 pounds, she should take 3.5 ounces). And, she's a lactation consultant, and was so helpful in encouraging me to fight the good fight to bring back my milk...and it is coming back. Moriah has lost weight a bit in the last week (the switch to formula, the throwing up, and our underfeeding probably all responsible), so our goal this week is to weigh her daily (thanks, Chad and Debby, for your scale!) and to see her GROW. In good news...today she hasn't thrown up at all (after a difficult evening yesterday)...and now that she's eating more, she's calmer than she's been in a couple days, and going a bit longer between feeds (for a couple days, she was going just 2 hours...now we know it's just because we weren't giving her enough in the first place). Whew! So much to learn with babies!
Today we have a GI appointment, and tomorrow, our first cardiology appointment, which is to us the most important appointment of the week. We're hoping to find out then about Moriah's upcoming surgery--when, and how long, and what the recovery will be like--and to probably start Moriah on some heart medications, to prevent failure prior to surgery. Lately I've been realizing that these next weeks are the last "normal" weeks before surgery/recovery, and that we should ENJOY them...we'll have "normal" (medicine-free, recovery-free) again, but it will be a while.
The boys are doing great this week. They're at soccer camp during the day and loving it--last night, their team was supposed to make a drink for their coach (some kind of competition among the teams...who could bring in the best concoctions)...so after supper, we were cutting mangos and clementines and mixing juices and grinding ice. It felt so GOOD to be up off the couch (had been ordered to lie there for the last few days by the midwife) and to do something fun with them.
Can I just say, though, how TALL Orilus looks in his soccer uniform this week?! Speaking of which, Monday morning we realized (duh) that Orilus' soccer cleats would not fit him anymore...checked the attic for hand-me-downs, and had 7.5's, which were TOO SMALL. So he's playing soccer this week in JASON'S shoes and shin guards! Yikes.
Quote of the week: When asked what to "name" the drink/smoothie the boys made last night (they had to come up with a creative name), Jackson, without missing a beat, says, "How 'bout 'Mimosas at Noon?'" A line from a movie, apparently (Cheaper by the Dozen, I think?). Hilarious.
Today we have a GI appointment, and tomorrow, our first cardiology appointment, which is to us the most important appointment of the week. We're hoping to find out then about Moriah's upcoming surgery--when, and how long, and what the recovery will be like--and to probably start Moriah on some heart medications, to prevent failure prior to surgery. Lately I've been realizing that these next weeks are the last "normal" weeks before surgery/recovery, and that we should ENJOY them...we'll have "normal" (medicine-free, recovery-free) again, but it will be a while.
The boys are doing great this week. They're at soccer camp during the day and loving it--last night, their team was supposed to make a drink for their coach (some kind of competition among the teams...who could bring in the best concoctions)...so after supper, we were cutting mangos and clementines and mixing juices and grinding ice. It felt so GOOD to be up off the couch (had been ordered to lie there for the last few days by the midwife) and to do something fun with them.
Can I just say, though, how TALL Orilus looks in his soccer uniform this week?! Speaking of which, Monday morning we realized (duh) that Orilus' soccer cleats would not fit him anymore...checked the attic for hand-me-downs, and had 7.5's, which were TOO SMALL. So he's playing soccer this week in JASON'S shoes and shin guards! Yikes.
Quote of the week: When asked what to "name" the drink/smoothie the boys made last night (they had to come up with a creative name), Jackson, without missing a beat, says, "How 'bout 'Mimosas at Noon?'" A line from a movie, apparently (Cheaper by the Dozen, I think?). Hilarious.
Sunday, August 2, 2009
on food
I had a revelation today. About food. The entire last week has focused around food, and suddenly today I'm understanding why, and what I have been meant to learn.
To summarize the week: due to some post-surgical setbacks I had this week, we had to switch Moriah from breast milk to formula mid-week, unexpectedly and suddenly. I was not happy with this switch--it has been a painful grieving process, actually--and Moriah's bout with reflux shows that she may not be entirely happy about it, either. It's no fun when the doctors tell you to watch for signs of heart failure (they want to do the surgery before her heart fails, to which you feel like saying sarcastically, "Oh, duh, really?!"), and these signs include vomitting and gasping for air, both of which she does when she throws up formula. So every time she throws up, a dread rises--is this heart failure, or formula intolerance?
Sigh.
So our entire week, and much of this coming week, is about food. When to feed her. How much. How often to take breaks. How to keep her sitting up as she eats. How long to leave her sitting up after she eats. To the ER to get a doctor's opinion. To the pedi to get a second opinion. To the hospital for an ultrasound. To a GI clinic this week. Back for another ultrasound (end of this coming week). Debates around soy versus cow's milk. And in the meantime, a tired mom who just wants to feed her baby herself and cannot and is taking some medication that makes her feel like...well, I'll let you fill in the blank there.
So back to the learning part. I was reading a magazine we get at home, and they had some thoughts about this month's readings (as prescribed by the Book of Common Prayer)--mostly on John's Gospel and Jesus' teaching on food. On himself, and the spiritual life, as a feeding-life (Jesus often talks about himself as "bread" and invites all to his dinner party of a spiritual life). The writers of the magazine were recalling the Israelites who, after leaving Egypt, grumble and complain that they want to go back (the journey to their new homeland too long and unsure, they'd rather return to slavery); there, they "at least had bread to eat." The writer was pointing out how often we are like that, how often we accept the "quick and easy" in our lives and in our spirituality rather than taking the longer road, the more authentic path, (and, as I interpreted the text) even the way of suffering. We'd rather be sure to count on our next meal; we want security and the known, even if it means we are not free.
I thought immediately of Moriah. It's so much easier for her, actually, to take the bottle--it's quicker, and more immediately satisfying. She doesn't have to work as hard for a gulp of milk. And yet, and yet, she has preferred, over and over, to take breastmilk when she can get it. I'm not sure if I will be able to offer it anymore to her, but her persistence has really touched me in the last weeks, and this week especially, when the feeding has been so hard.
Moriah's name also means "teaching place" (Mount Moriah being the "teaching place" for Abraham, and the mountain on which the Temple was built as the center of teaching for Jews). This week, after all the tears and frustration and grief, I am accepting her teaching as this: whenever possible, choose the best "food" in life. There is good, and it is easy and immediate. And then there is best, and it is difficult, and maybe more scarce, and harder to find, and requires more of our energies.
"This is a hard teaching," Jesus' disciples said to him after he invited them to "eat" of him, and to follow him on the suffering-way. "Who can accept it?"
Moriah's struggle this week (and she is still struggling today, still throwing up too frequently) challenges me to eat in the way that she does--in complete surrender, arms flailing wide open and mouth always asking for more of the best stuff. She models for me an ultimate act of trust, that God's arms, cradling me, are strong and loving. I'm trying to learn what Moriah already knows--in these arms I will have all I need. The way may be difficult, and even cause upset, but it is the way of provision, and I can trust it's the way of Love.
To summarize the week: due to some post-surgical setbacks I had this week, we had to switch Moriah from breast milk to formula mid-week, unexpectedly and suddenly. I was not happy with this switch--it has been a painful grieving process, actually--and Moriah's bout with reflux shows that she may not be entirely happy about it, either. It's no fun when the doctors tell you to watch for signs of heart failure (they want to do the surgery before her heart fails, to which you feel like saying sarcastically, "Oh, duh, really?!"), and these signs include vomitting and gasping for air, both of which she does when she throws up formula. So every time she throws up, a dread rises--is this heart failure, or formula intolerance?
Sigh.
So our entire week, and much of this coming week, is about food. When to feed her. How much. How often to take breaks. How to keep her sitting up as she eats. How long to leave her sitting up after she eats. To the ER to get a doctor's opinion. To the pedi to get a second opinion. To the hospital for an ultrasound. To a GI clinic this week. Back for another ultrasound (end of this coming week). Debates around soy versus cow's milk. And in the meantime, a tired mom who just wants to feed her baby herself and cannot and is taking some medication that makes her feel like...well, I'll let you fill in the blank there.
So back to the learning part. I was reading a magazine we get at home, and they had some thoughts about this month's readings (as prescribed by the Book of Common Prayer)--mostly on John's Gospel and Jesus' teaching on food. On himself, and the spiritual life, as a feeding-life (Jesus often talks about himself as "bread" and invites all to his dinner party of a spiritual life). The writers of the magazine were recalling the Israelites who, after leaving Egypt, grumble and complain that they want to go back (the journey to their new homeland too long and unsure, they'd rather return to slavery); there, they "at least had bread to eat." The writer was pointing out how often we are like that, how often we accept the "quick and easy" in our lives and in our spirituality rather than taking the longer road, the more authentic path, (and, as I interpreted the text) even the way of suffering. We'd rather be sure to count on our next meal; we want security and the known, even if it means we are not free.
I thought immediately of Moriah. It's so much easier for her, actually, to take the bottle--it's quicker, and more immediately satisfying. She doesn't have to work as hard for a gulp of milk. And yet, and yet, she has preferred, over and over, to take breastmilk when she can get it. I'm not sure if I will be able to offer it anymore to her, but her persistence has really touched me in the last weeks, and this week especially, when the feeding has been so hard.
Moriah's name also means "teaching place" (Mount Moriah being the "teaching place" for Abraham, and the mountain on which the Temple was built as the center of teaching for Jews). This week, after all the tears and frustration and grief, I am accepting her teaching as this: whenever possible, choose the best "food" in life. There is good, and it is easy and immediate. And then there is best, and it is difficult, and maybe more scarce, and harder to find, and requires more of our energies.
"This is a hard teaching," Jesus' disciples said to him after he invited them to "eat" of him, and to follow him on the suffering-way. "Who can accept it?"
Moriah's struggle this week (and she is still struggling today, still throwing up too frequently) challenges me to eat in the way that she does--in complete surrender, arms flailing wide open and mouth always asking for more of the best stuff. She models for me an ultimate act of trust, that God's arms, cradling me, are strong and loving. I'm trying to learn what Moriah already knows--in these arms I will have all I need. The way may be difficult, and even cause upset, but it is the way of provision, and I can trust it's the way of Love.
Saturday, August 1, 2009
sunny Saturday
What a long week! Sitting here overlooking our neighborhood on a bright, sunny day, I finally have a few moments to pause and take stock of this week. It has been the most difficult week for me since Moriah's birth; I ended up in the ER myself on Monday with a setback related to my post-Cesarean recovery, and Wednesday, we visited the ER for a second time with Moriah, who was vomitting frequently. There just seemed to be too many things to be sad about this week, and beginning to read the enormous information packet on Down Syndrome didn't help, as we are beginning to learn more about Moriah's diagnosis and wrestle often with worrying for her future.
But small graces continued to surprise this week. Friends who called. Friends who watched our boys while we ran to the ER. A friend who ran to the pharmacy to get us a better thermometer when we were worried about Moriah's temperature. Neighbors we are just beginning to know who brought supper, offered to run errands, and left bread and bagels on our porch last night. A friend who has been walking our dog nearly every day. A yummy Haitian meal delivered to our house. Friends who hung out with our boys this week, giving them a fun-filled week when Jason and I just would not have been able to. Family who have called, emailed, sent cards, and had flowers delivered. We--and mostly, I--would not have made it through this last week without the support of so many.
Also, a great gift--the birth of my new nephew to my sister Ginny and her husband, Matt. Pascal Kedrick VanDuyne was born on Wednesday and we were finally able to see him yesterday...he is so cute, and so healthy and strong--an answer to prayer after Ginny's trip to Liberia this spring and the health issues she encountered there.
This week it's been very difficult not to feel pity for ourselves, especially for Orilus and Jackson (who have been unable to hold Moriah as much as they wanted this week because of her vomitting issues) and for Moriah (who seems to have so much stacked against her). But this morning from my vantage point at our office desk, I can see our neighbor, sitting on her porch across the street, widowed with two young children. I glance at the nearby phone and remember that I need to call my friend Kori today, whose son Eddie is still not recovered from his bone marrow transplant three years ago and who has spent the week intubated in the ICU. I look at our calendar and see that tomorrow, our friends whose son has Down Syndrome will be visiting us again, and feel sadness and gratitude, both, for their suffering, as it now illuminates our own way. All of these people remind me that in suffering, we are not alone, and that sadness and disappointment and illness are a part of the human condition. "Why NOT me?" I ask again this morning, and find again a peace of mind, and a resolve to approach a new week with more laughter and fewer tears.
And this week will be busy. We have five doctor's appointments in 4 days, traveling among 2 hospitals and 2 clinics. We so appreciate your continued prayers as we continue to learn more about Moriah; pray, too, that we will have the opportunity this week to have some good conversations with Orilus and Jackson, who have a lot of questions about Moriah's diagnosis and her upcoming surgery. Even as we tend to Moriah's needs, we are trying so hard to make sure that our sons are not feeling left behind, and need special wisdom and grace for that.
The morning is nearly over, and the neighborhood is quiet--I can hear the breeze in the trees, even, an unusual sound from our urban hilltop. Our neighbor's wooden wind chime clanks, a dog barks, and our baby sleeps as our boys enjoy a day at a waterpark with our neighbors from next door. Even here, in an unlikely neighborhood in a forgotten city, we have been surrounded by love and support, and we are grateful. Grace abounds, in the most unlikely of places.
But small graces continued to surprise this week. Friends who called. Friends who watched our boys while we ran to the ER. A friend who ran to the pharmacy to get us a better thermometer when we were worried about Moriah's temperature. Neighbors we are just beginning to know who brought supper, offered to run errands, and left bread and bagels on our porch last night. A friend who has been walking our dog nearly every day. A yummy Haitian meal delivered to our house. Friends who hung out with our boys this week, giving them a fun-filled week when Jason and I just would not have been able to. Family who have called, emailed, sent cards, and had flowers delivered. We--and mostly, I--would not have made it through this last week without the support of so many.
Also, a great gift--the birth of my new nephew to my sister Ginny and her husband, Matt. Pascal Kedrick VanDuyne was born on Wednesday and we were finally able to see him yesterday...he is so cute, and so healthy and strong--an answer to prayer after Ginny's trip to Liberia this spring and the health issues she encountered there.
This week it's been very difficult not to feel pity for ourselves, especially for Orilus and Jackson (who have been unable to hold Moriah as much as they wanted this week because of her vomitting issues) and for Moriah (who seems to have so much stacked against her). But this morning from my vantage point at our office desk, I can see our neighbor, sitting on her porch across the street, widowed with two young children. I glance at the nearby phone and remember that I need to call my friend Kori today, whose son Eddie is still not recovered from his bone marrow transplant three years ago and who has spent the week intubated in the ICU. I look at our calendar and see that tomorrow, our friends whose son has Down Syndrome will be visiting us again, and feel sadness and gratitude, both, for their suffering, as it now illuminates our own way. All of these people remind me that in suffering, we are not alone, and that sadness and disappointment and illness are a part of the human condition. "Why NOT me?" I ask again this morning, and find again a peace of mind, and a resolve to approach a new week with more laughter and fewer tears.
And this week will be busy. We have five doctor's appointments in 4 days, traveling among 2 hospitals and 2 clinics. We so appreciate your continued prayers as we continue to learn more about Moriah; pray, too, that we will have the opportunity this week to have some good conversations with Orilus and Jackson, who have a lot of questions about Moriah's diagnosis and her upcoming surgery. Even as we tend to Moriah's needs, we are trying so hard to make sure that our sons are not feeling left behind, and need special wisdom and grace for that.
The morning is nearly over, and the neighborhood is quiet--I can hear the breeze in the trees, even, an unusual sound from our urban hilltop. Our neighbor's wooden wind chime clanks, a dog barks, and our baby sleeps as our boys enjoy a day at a waterpark with our neighbors from next door. Even here, in an unlikely neighborhood in a forgotten city, we have been surrounded by love and support, and we are grateful. Grace abounds, in the most unlikely of places.
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