As many of you have read, I've been posting my reflections on having a daughter with Down syndrome to my Facebook page this month. So many of you asked me to compile them in one place; please find them here: https://docs.google.com/document/d/1QSmigfHFtDB-j6mqDYPkY2nLjs8ci8B_Tb97qSspGDk/edit
I hope my writings do more than make you emotional--I hope they help you to be a better friend to people with Down syndrome and their families.
Thursday, November 1, 2012
Monday, August 27, 2012
...and then bad news comes again
I woke up yesterday morning to Jason's sudden calling of my name and lights in our bedroom suddenly turned on.
Turns out Moriah was unresponsive--though breathing and fever-free--and we needed all-hands-on-deck.
We hemmed and hawed a bit. Her vitals were good. Her lungs sounded clear. But instinct won out, and we quickly loaded her into the car and brought Moriah to the pediatrician's (by then, she was at least crying and seemed less floppy). We kindly but firmly argued our way through the front desk and into the first appointment. As we sat in the waiting room, Moriah began to improve, and by the time we saw the doctor, we were wondering if we had wasted our time. She seemed suddenly fine. A flu, maybe?
But no. The doctor came in, spoke with us for a few moments, and said the dreaded words: "I see she has a neurological history...what you're describing is a classic case of seizure." (Many of you remember that Moriah suffered from a month-long battle with infantile spasms at 6 months of age, putting her at risk for future seizure disorders throughout her lifetime).
Moriah recovered yesterday; by mid-morning, she ate breakfast and had resumed talking and walking. We've talked with Moriah's neurologist today and he's ordered an EEG for Wednesday afternoon.
After the good news of Moriah's cardiology appointment, we are living again with the unknown, and doing what parents do: keeping fear at bay by staying busy, going about the usual, and encouraging each other with hugs and kind words.
In the busyness of this week--Jason's grandmother passed away mid-week last week, and the memorial service is tomorrow; Jackson's soccer season is begun; we have many appointments as Orilus is moving to a new town and school district (we are working hard to keep the details of his life private, but many of you know by now that he has not been able to live at home with us for many months); my teaching at Gordon College begins Thursday--we can't understand the sense of "one more thing," especially one more painful thing, added to our life.
But things do not always make sense. Life is not pain-free. The future is not certain. Wellness is not guaranteed.
In the truth of all that, we want to be accepting of our life, and angry about the injustice of suffering. We want to be at peace, and to grieve. We want pain to do a work in us that makes us softer, not harder, people.
This is much, much harder than it seems, this abiding-with-God in all things.
"This is a hard teaching," the disciples said to Christ. "Who can accept it?" Sometimes I cannot. But like Peter, we recognize that there is nowhere to run, nowhere else to go, no one else in whom such hope and grace abides.
We appreciate your prayers for us as we run, then, into the unknown--accompanied, we believe in faith, by a loving God--and as we hope the journey produces in us the kinds of life that would make the trip meaningful and more bearable.
Turns out Moriah was unresponsive--though breathing and fever-free--and we needed all-hands-on-deck.
We hemmed and hawed a bit. Her vitals were good. Her lungs sounded clear. But instinct won out, and we quickly loaded her into the car and brought Moriah to the pediatrician's (by then, she was at least crying and seemed less floppy). We kindly but firmly argued our way through the front desk and into the first appointment. As we sat in the waiting room, Moriah began to improve, and by the time we saw the doctor, we were wondering if we had wasted our time. She seemed suddenly fine. A flu, maybe?
But no. The doctor came in, spoke with us for a few moments, and said the dreaded words: "I see she has a neurological history...what you're describing is a classic case of seizure." (Many of you remember that Moriah suffered from a month-long battle with infantile spasms at 6 months of age, putting her at risk for future seizure disorders throughout her lifetime).
Moriah recovered yesterday; by mid-morning, she ate breakfast and had resumed talking and walking. We've talked with Moriah's neurologist today and he's ordered an EEG for Wednesday afternoon.
After the good news of Moriah's cardiology appointment, we are living again with the unknown, and doing what parents do: keeping fear at bay by staying busy, going about the usual, and encouraging each other with hugs and kind words.
In the busyness of this week--Jason's grandmother passed away mid-week last week, and the memorial service is tomorrow; Jackson's soccer season is begun; we have many appointments as Orilus is moving to a new town and school district (we are working hard to keep the details of his life private, but many of you know by now that he has not been able to live at home with us for many months); my teaching at Gordon College begins Thursday--we can't understand the sense of "one more thing," especially one more painful thing, added to our life.
But things do not always make sense. Life is not pain-free. The future is not certain. Wellness is not guaranteed.
In the truth of all that, we want to be accepting of our life, and angry about the injustice of suffering. We want to be at peace, and to grieve. We want pain to do a work in us that makes us softer, not harder, people.
This is much, much harder than it seems, this abiding-with-God in all things.
"This is a hard teaching," the disciples said to Christ. "Who can accept it?" Sometimes I cannot. But like Peter, we recognize that there is nowhere to run, nowhere else to go, no one else in whom such hope and grace abides.
We appreciate your prayers for us as we run, then, into the unknown--accompanied, we believe in faith, by a loving God--and as we hope the journey produces in us the kinds of life that would make the trip meaningful and more bearable.
Tuesday, August 21, 2012
at Children's Hospital today
Dear Friends,
Today Jason and I found ourselves on our way to Children's Hospital for Moriah's annual cardiology visit. No matter how much I try to do to create a buffer around these visits (this morning, I treated myself to a caramel macchiato, for instance), the hopefulness I try to carry with me to these appointments does not leave me immune from the sadness that accompanies me, too. They mingle. They always do. Sometimes I think this is grace--not that hope eradicates grief, but that it is manifest within it.
In many ways, the visit went better than expected. Moriah allowed the EKG, counting
each node as it was placed on her chest. She sat patiently through three doctors' exams. And she clapped when we cheered at the news that her heart is so healthy she won't have to re-visit the cardiology clinic for another three years. Amazing. She will be six years old then. I can't imagine her at six, and can't imagine her without cardiac concerns for that length of time. It really does feel miraculous, a great gift (left, in the photo, Moriah hours after her open heart surgery at age 2-1/2 months).
But also. Also there was the doctor who told us that when she went to view Moriah's recent history (in search of her last cardiology visit), her year-long search pulled up over one hundred doctor's visits! She was flabbergasted at all that Moriah has been through, and more so when we insisted that this has been Moriah's healthiest year yet. Hearing that--on average, a doctor's visit every 3 days for the last year--made my heart ache for our little girl, and for all the not-yet that is still our hope for our daughter, and all she has to struggle through to have what many children have at birth.
And also. On the way to the hospital this morning, I called Kori, Eddie's mom, to find out if they were in Boston today, and if so, if there would be a chance of a rendezvous. I have seen Kori frequently this way; in between doctor's visits, we will catch a few minutes in a lobby or a hallway, or we will sit with the other in a waiting room and talk. They were on their way to Boston, too, though our visit did not materialize due to scheduling conflicts and too-long waits for doctors. But Kori gave me some important news: Eddie is featured in today's Boston Herald.
So of course as soon as we arrived at Children's, we rushed to buy a paper, and stood in the lobby and read it. I got to it first, and read it through, crying the entire time. Jason read it then, and cried, too. If you haven't seen the article today, I hope you'll check it out at http://bostonherald.com/sports/columnists/view.bg?articleid=1061154666&format=comments#2992135 It's worth a read, especially as it confronts our ideas about suffering, and justice, and grace. Or at least, mine.
I know Eddie's story; for over six years now, we have raised funds for his family; we know how he is now wheelchair-bound, using a feeding tube, and needing a double lung transplant to survive. And I know ours--we have two more children alive now than we would have without the interventions of Children's Hospital. And standing there in the lobby today, it struck me--as it often does when we're visiting--that there are so many stories there, narratives that are triumphant, and heartbreaking, and ordinary, and extraordinary, and just so very human. How some of us leave those hospitals with diagnoses of hope, and others without them, is terribly mysterious. I saw a mother watching me as I finished reading the Herald today; she was trying to figure out why I was crying, I'm sure, and her eyes went back and forth between Moriah and me, trying to piece it all together.
And I wanted to say, Lady, you have no idea. You will never figure out what we've been through in this place.
Today was a triumphant day for us. We are truly grateful for Moriah's good news; I thanked the doctors so profusely and so emotionally today I couldn't finish my sentences. They saved her life.
And we were also reminded: When hope is harder to come by, when hopelessness stalks people we love, those of us who have been renewed in hope offer some to our friends. We call them back and tell them we love them. We send money and gifts and give hugs and make them laugh. We tell them that though it doesn't seem like it, Love is available, and all around.
That's what has been done for us. Today, we are grateful. Grateful especially because we know too well how undeserved such good news is, how randomly the universe seems to dole these things out, and how mysteriously God shows up through each one of us to love on the other. In light of suffering and hope, it's all we can do to whisper our thanks, join hands with the waiting, and feel again the blessing of a daughter who is with us still.
(If you'd like to donate to Eddie's Fund this month, please visit www.eddiesfund.blogspot.com)
Today Jason and I found ourselves on our way to Children's Hospital for Moriah's annual cardiology visit. No matter how much I try to do to create a buffer around these visits (this morning, I treated myself to a caramel macchiato, for instance), the hopefulness I try to carry with me to these appointments does not leave me immune from the sadness that accompanies me, too. They mingle. They always do. Sometimes I think this is grace--not that hope eradicates grief, but that it is manifest within it.
In many ways, the visit went better than expected. Moriah allowed the EKG, counting
But also. Also there was the doctor who told us that when she went to view Moriah's recent history (in search of her last cardiology visit), her year-long search pulled up over one hundred doctor's visits! She was flabbergasted at all that Moriah has been through, and more so when we insisted that this has been Moriah's healthiest year yet. Hearing that--on average, a doctor's visit every 3 days for the last year--made my heart ache for our little girl, and for all the not-yet that is still our hope for our daughter, and all she has to struggle through to have what many children have at birth.
And also. On the way to the hospital this morning, I called Kori, Eddie's mom, to find out if they were in Boston today, and if so, if there would be a chance of a rendezvous. I have seen Kori frequently this way; in between doctor's visits, we will catch a few minutes in a lobby or a hallway, or we will sit with the other in a waiting room and talk. They were on their way to Boston, too, though our visit did not materialize due to scheduling conflicts and too-long waits for doctors. But Kori gave me some important news: Eddie is featured in today's Boston Herald.
So of course as soon as we arrived at Children's, we rushed to buy a paper, and stood in the lobby and read it. I got to it first, and read it through, crying the entire time. Jason read it then, and cried, too. If you haven't seen the article today, I hope you'll check it out at http://bostonherald.com/sports/columnists/view.bg?articleid=1061154666&format=comments#2992135 It's worth a read, especially as it confronts our ideas about suffering, and justice, and grace. Or at least, mine.
I know Eddie's story; for over six years now, we have raised funds for his family; we know how he is now wheelchair-bound, using a feeding tube, and needing a double lung transplant to survive. And I know ours--we have two more children alive now than we would have without the interventions of Children's Hospital. And standing there in the lobby today, it struck me--as it often does when we're visiting--that there are so many stories there, narratives that are triumphant, and heartbreaking, and ordinary, and extraordinary, and just so very human. How some of us leave those hospitals with diagnoses of hope, and others without them, is terribly mysterious. I saw a mother watching me as I finished reading the Herald today; she was trying to figure out why I was crying, I'm sure, and her eyes went back and forth between Moriah and me, trying to piece it all together.
And I wanted to say, Lady, you have no idea. You will never figure out what we've been through in this place.
Today was a triumphant day for us. We are truly grateful for Moriah's good news; I thanked the doctors so profusely and so emotionally today I couldn't finish my sentences. They saved her life.
And we were also reminded: When hope is harder to come by, when hopelessness stalks people we love, those of us who have been renewed in hope offer some to our friends. We call them back and tell them we love them. We send money and gifts and give hugs and make them laugh. We tell them that though it doesn't seem like it, Love is available, and all around.
That's what has been done for us. Today, we are grateful. Grateful especially because we know too well how undeserved such good news is, how randomly the universe seems to dole these things out, and how mysteriously God shows up through each one of us to love on the other. In light of suffering and hope, it's all we can do to whisper our thanks, join hands with the waiting, and feel again the blessing of a daughter who is with us still.
(If you'd like to donate to Eddie's Fund this month, please visit www.eddiesfund.blogspot.com)
Monday, July 16, 2012
First Day of PreK!
Moriah began school today! Now that she's 3, her Early Intervention services have ended. The public school system in our town is now responsible for providing her with schooling and therapies, even in the summertime. Moriah will attend 3 weeks of summer PreK, then take a few weeks off and begin "official" PreK in the fall in an Integrated Preschool Program (half of the children are typical; half have special needs), where she'll receive speech, physical, and occupational therapies. It's an amazing program, especially for such a small town. We're delighted for her, and so proud. After a weekend with fevers of 103+ degrees and an ear infection diagnosis, we're amazed at how she pulls herself together and maintains her joy, her independence, and her motivation. Happy PreK Day, Moriah!
Sunday, July 15, 2012
Portraits post-tantrum
On the day of her third birthday, Moriah ended up in time out, crying so pitifully that I couldn't help but take a few photos...
Friday, July 13, 2012
Happy 3rd birthday, Moriah
Today is Moriah's third birthday. I have been a very unfaithful blogger, my writing saved mostly for my doctoral classes, my dissertation, a handful of articles on their way to publication, and my personal journal. But today I wanted to write again, because Moriah's birthday is always for me a big and meaningful milestone.
It is afternoon here in our little bungalow. It is so quiet I can hear the rustling of the leaves of trees across the street, the chirping of robins in our yard, and the whirring of the living room ceiling fan. Moriah is asleep--she still takes naps, usually an hour or two, which may mean I have only a few minutes left of this quiet time. Jason has gone to Lowe's--what started as a pipe clog has now become a structural project (and this the day after we've returned from our 15th anniversary trip to Nantucket...does anyone else seem to suffer so soon upon return these crazy incidents that threaten to steal whatever rest and re-connection you may have gained by "being away"?). Our sons are not home, but we are. I love summers for this--the extra time Jason and I both have, because we both are not in the classroom, and the family time we can try to snatch between the busyness of managing three children with lots of needs.
It has been another remarkable year. I'm unable to blog about all that has transpired, mostly because we try so hard to protect our boys' privacy as much as we can, but we've had so much happen that has caused in me a visceral reaction, a sort-of-rejection of my own life, I'm sorry to say. I'm sure you've had these moments, too. Things so crazy, so tragic, so surprising happen, and you think, "Really?! This is really my life?!"
Even today, Moriah's third birthday, is a small example of that. We began well--Jason and I went together with Moriah in the early morning hours to a hospital about 40 minutes away for her weekly pool therapy. At 8am, we are sitting by the pool and watching the PT try to get Moriah to work. Moriah's not having it. At 8:45, we are changing Moriah, only to find poop all over her diaper and swimsuit, towel and hospital linens. Sigh. We clean her up. She throws some fits on the ride home, angry that we are driving the fuel-efficient car instead of the minivan, which means she can't watch her Elmo in the car (I find these DVD players to be both a blessing and a curse). She is angry still when we get home. She hits and throws. She sits in time out. She yells. She demands what she wants. And I look at her, I'll admit it, and I think: "Really?! This is really my kid?!" There is fear there (is she going to turn out like other kids with DS I've heard about who have significant behavioral issues, or is this just a stage?), and there is frustration, and there is weariness, and there is disgust.
And guilt, of course, because I'm a mother, and it's my daughter's birthday and I should be ENJOYING her for goodness sake! And worse: We've been away from her for 4 days on our anniversary trip (oh wait, did I already mention we went to Nantucket? Maybe because I'm thinking I should just go back...) and shouldn't missing her have lasted a heck of a lot longer than this?
But Moriah is, after all, 3. And she is her own person, that's for sure. It's sort of what you get when you have a kid, isn't it?
So I pack her into our minivan (wishing for Elmo to save me, please, from her tantrums) and take her to a local farm. We pick out peaches and blueberries and local honey, tomatoes and corn on the cob (she loves corn on the cob) and zucchini. And as I'm putting her back into the van at the end of our farm trip, and she is arching her back in such a way that I really think I might drop her, because she is angry to leave the very stroller she didn't even want in the first place, I take a deep breath and think, "This is my life." I give her a farm-fresh peach, wiped off on my shirt, and am thankful when she passes it to me a few minutes later. We eat it, back and forth, on the way home, and for a few moments, we have quiet, and connection.
Lots of people like to tell me how amazing Moriah is. How adorable. How smile-y. How happy. How loving. How friendly. How hug-gy. How kiss-y. She is all those things. And sometimes people will talk about Moriah's purpose in life, how she has much to teach us, how maybe the point is not what she has left to learn, but what we can learn from her.
This is not always an easy perspective for me, the one who is usually tasked with coordinating her educational and medical care. And I'm skeptical of people who want to whitewash the world of special needs, and gloss over the very real grief we parents experienced--and sometimes, still do--about the things our kids are missing, or will miss.
But watching Moriah eat a peach in the rear view mirror today, I'm giving in. This is my life, wild and crazy and way too full. I choose to be here, in it, and to accept it for what it is (which is, mostly, totally nuts and not at all what I thought it would be when I started this marriage 15 years ago). And in honor of Moriah's third birthday, I'm going to say YES to all the things she is teaching me, because I'm learning a lot from her, even cranky-crazy her.
In fact, here are a handful of things I'm learning from Moriah:
1. When eating, ENJOY food. Smack your lips. Say "Mmmm!" with a satisfied smile. Slurp your drink. Understand that food is food, but it's also nourishment and a sign that someone loves you, to care for you so well. Eat heartily.
2. When you have a chance to move, do it with abandon. Spin. Hang upside down. Throw out your arms when you run. Dance with your head, your hands, your hips, and your legs. And when therapists tell you you're not doing walking "quite right," walk anyway and trust that these things figure themselves out in time.
3. Sing to most songs, especially when you can't say the words, or don't know them. Sing anyway, and whenever possible, add motions.
4. Give hugs liberally.
5. Laugh everyday for no reason. And get other people to do the same. (Making "scary face" is a really good way to do this, as is getting right into someone's face and just giggling).
6. Cry when you are sad. Cry, and ask for a hug, and when it passes, be done with it, and move on.
7. Sit next to a bookshelf everyday and read something.
8. Make some drama. Why not?
9. Make art out of whatever you have on hand (though we wish Moriah wouldn't do so with poop quite so much). In any case, if there isn't a lot of beauty around, or you spy a blank wall or a white sheet of paper, realize it can be improved, and get to it.
10. Wear a swimsuit to bed (see #9 about poop art).
11. Pray each evening, and pray only thank-yous. When you're finished, shout "Amen!" to express to God that you are really, really thankful.
12. Be convinced you can do way more than you can. For example, if your brothers are playing basketball, be very sure you can insert yourself into their game. Run onto the court and try to dribble the ball. Don't worry, eventually someone will pick you up, lower the hoop, and lift you to make that dunk. What you don't have in skill, make up for with faith, confidence, and curiosity.
13. Be an optimist.
14. When someone is crying, pat them on the back and offer a hug. Ditto for friends who are angry and having tantrums.
15. Share. Always.
16. It is really, really hard to say you're sorry. But you always feel better afterwards.
17. Be Jason's biggest cheerleader and fan...every man deserves a daughter who reminds her mom of this one.
18. Kiss yourself in the mirror every day, because really, are you every going to be any more beautiful than you are right now?
19. Be totally imperfect, and totally okay with it. Sometimes, when someone is saying how cute you are, blow them a haughty raspberry. Or, when you are in the middle of a tantrum, give a hug. That way, people around you remember you are both amazing and completely crazy.
20. Be fully present to your life. If it hurts, cry. If you don't like it, say so. If you need something, ask. If it's funny, laugh. No matter what, be happy that you are here, because too much has conspired to make it otherwise, and you are a lucky girl, and your life is a gift and full of many graces.
Happy birthday to my girlfriend. You are turning out to be one heck of an amazing, precious gift.
I love you.
Mom
July 13, 2009
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