a day such as this...

ella brooks and some of the other "friendly beasts" and all of the children (far left)
heath playing with his SAINTS semi truck and tractor gifts. vruummm....by the way, he has been wearing that lovely yellow montreat stocking cap, except in bed and bath, for 3 days!! usually he pulls it almost over his eyes and you feel like his next word is going to be "Word..."

uncle robert tells jokes...

i am sitting on the couch eating a brownie (that my mom made as part of a treat to take to the PICU staff at Duke--sorry, mom, i couldn't resist:). my children are nestled all snug in their beds (i dare say they are dreaming of things like big trucks and fancy nancy in lieu of sugar plums). i sent chris off to hang out with some fellas from the church. the football game is playing in the background. it feels almost, well, NORMAL....

there is a little part of me that feels like i am cheating on my memories, particularly on the memories of this day and the next, one year ago.

but i know that is not really true. still, at this very normal moment, i feel the tears well up in my eyes. the emotions, for all of our family and dear friends, are right on the edge. and every once in a while, they spill over just a bit when we remember what we were doing a year ago today. we had almost lost hope. it was day ten on life support, and everyone had been telling us that bad things started to happen after day ten. and then, the phone rang and the voice said, "mrs. tuttle, i figured that you had already heard the rumors." what rumors? "well, we think we have a heart."

hope. joy.

and they did. and it is a good, strong heart. and it beats well in heath's chest. it helps him be the busy, hilarious, rascally (is that word?) boy that he is. it helps him be the strong, determined little fella who has taught us so much at an early age...

and today i am so grateful for the gift of life that was given to our son, to us, from someone very far away, who has very different memories of this day a year ago.

we enjoyed the music at church today. we had an wonderful early christmas celebration with sarah, robert, bob and pat at our house after church. then sarah and robert stayed home with heath (bless them--what a gift to us!) and the rest of our crew headed to the church for the christmas pageant. and, oh my, it was a pageant. 60 children (yes, that IS the correct number) led us in all their great glory. ella brooks, a dove, sitting peacefully in the middle of the crowd. a wayward cow who made me laugh as hard as i have in a long time. 20 dancing angels. the old familiar hymns that warm my soul. the familiar story. it was magnificent. the lights came down, silent night began, and the "twinkling stars" (the youngest children) began the make their way down the aisle. it was a holy night, a holy moment. all of a sudden the emotion welled up--thinking simply of being able to BE in the moment, looking at my sweet girl, thinking about how much Heath would enjoy it next year, NEXT year (again, we can actually not be as afraid to make plans), thinking about the wonderful congregation to which we have been called...it was almost too much to take in in that moment. i shed those tears that had been coming all day--with great joy and gratitude.

with the angels, let us sing--hallelulah!

and then the lights came up, we ate dinner, sang many more carols with more people than could fit at the tables and chairs, came home to Heath doing his "i'm so happy to be with my family dance" (which is hilarious) and we snuggled for a few extra minutes on the bed all together.

if you had wondered if we were thinking about this anniversary, we most certainly are. have we talked about it? quietly, late at night, in brief moments. but as we live day to day it is almost impossible to re-live last december out loud. so instead, we have realized the best way to "celebrate" and savor the moments is to live as fully and heartily and normally as we know how these days.

and we'll give thanks for life and all those who have walked with us and cried tears of horror and great joy and made it possible for us to be here, and for this great little fella who teaches us more about living every day, and most certainly, we'll say many prayers for some dear givers of life very far away.

blessings to you all. good night.

from ER to, um, other activities...

so last year on Dec. 3 at 10:30 a.m. i was rushing around to get the kids ready to go get heath "checked" at the pediatrician, knowing in my heart that something was very wrong...only to live out some of the worst moments any parent could imagine a few hours later. This year at 10:30, my sweet, healthy son was patting the REAR END of a very nice stranger in line at the grocery store! my, how things have changed.

hilarious. i needed a few more things at the store(we're having chris' whole wonderful staff over for staff christmas party on saturday night!), and I knew that Heath would just be thrilled to drive the car cart and eat a sugar cookie. So, I scrubbed the darn car cart with all my power and all the wipes available and we went shopping with heath "vrummm, vrumming" pretty much at the top of his lungs (luckily there were about 5 other people in the store). As we were checking out, there was a little problem with the amount ringing up, so I was paying attention to what the manager and the cashier were doing with my bill (yes, i am a sale shopper and I KNEW it wasn't right...) until I heard an eruption of laughter from the line next to us and realized that my blessed child was the root of the eruption. The other cashier said, "ma'am, we're laughing because your very friendly son just patted this very nice lady's behind," and with that he and all the other employees began laughing louder with, "well, I never saw that before...he sure is friendly..." you don't know the half of it. as we were walking out to the car, I apologized about 3 times to the lady, who also thought it was hilarious and even more so because the cashier had been in the process of trying delicately to ask her if she wanted a senior citizen discount at the moment of the "pats." As I was getting Heath in the car, I said, "yes, and he's a preachers' kid to boot." She said, "well, I am a preacher's wife and that's just fine." She told me that her husband was a retired episcopal priest and I told her that my husband was the new pastor at Westminster (this would be the point where Chris would be rolling his eyes and asking where my sweet son got his ability to make friends so quickly...) and the lady said, "oh I love him! we come over to hear him preach every once in awhile. I am heading over to my church right now and the ladies are going to love this one..."

As she was walking to her car, she stopped short and turned around and said,"I always hated what happened with you all last year--what a way to start in a new place. I prayed for you and your son all the time." and I said, "Well, he just patted you on the rear end." And then she said, "I think I am going to cry. I can't believe it was him. He seems so healthy." And I added, "and frisky too..." :)

and there we are, my friends. if we couldn't find something to laugh about, we'd probably cry with tears of joy, tough memories, fears and gratitute.

we actually had a great day. my dear sister-in-law, knowing what day it was, came over and kept the kids so chris and i could go on a lunch date. we sat, by ourselves for quite some time, high at the university club looking out over all of durham, and clinked our sweet tea glasses to a better year. and then we actually started talking about plans for something else--because we have the ability to plan a bit these days...

it wasn't until sarah and i had talked a little more later, and heath was asleep, eb at a friend's house, a rare quiet house, that i really started to remember that day. (For those of you who may have signed on later-this day a year ago started with the pediatrician's office, an ambulance ride, crashing in the ER at Duke, several hours of those things you have seen on tv as they are trying to stabilize someone culminating in Heath ending up on life support late in the evening--try putting that in one sentence...)

and as i cooked (that is just what i do), I opened the door and let in the sunshine and fresh air, and I held all those moments of horror and fear in my heart.

AND, I remembered how important you all were to this journey. You dropped everything you were doing and ran to our sides, or you prayed and told your friends to pray, or cooked, or played 'friends' with ella brooks. you cried with us, you laughed with us. our family never left our sides--spending countless nights in the hospital, putting up christmas, giving up vacation days, trying to hold us. each one of us remembers different parts of that day and the surrounding days, in different ways.

and as i remember, i do it mainly to find hope in all things--who would have thought that we'd be here a year ago today?

i watched heath run after the big kids at the bus stop, giggling, we had a fun family evening with playing doctor (ironic, i think, but good to watch both kids laugh as they pretended to listen to our hearts) and decorating the christmas tree, and rolling around and listening to music.

and when i put heath to sleep, i must admit i held him a little longer than usual, kissed him a couple extra times and sang "you are my sunshine"--just because I could.

all my love. carrie

yes his arm is fractured!

If you had asked me 2 years ago what I would be thankful for in 2009, there is absolutely no way this answer would have been in the realm of possibilities: I am thankful to have a toddler so healthy and full of life that he would fracture his arm while playing on the playground, run into a recliner with his eye while laughing with family, and wake up at 4:15 a.m. regularly because, well, he loves being in the world so much he would like to start early.

nope. not on my radar screen. but such is life, my friends. would you have been able to list the things you are thankful for in 2009 a couple of years ago?

heath, eb and I were playing on the church playground last saturday when he took a funny little spill and i could tell pretty quickly that something was not quite right. however, he immediately learned to compensate for not being able to put weight on it, and you had to watch really carefully to even know that he was favoring it. our most fabulous pediatrician got him all splinted up and we had an xray that showed a small fracture. He is doing just fine--and doesn't seem to be in any pain--and just keeps trying to get us (particularly my mom--hmmm...) to take off the splint. then, if that wasn't bad enough, the stinker was running toward his daddy last night and fell into a recliner and cut the side of his eye. the pictures do not do it justice, but let's just say he looks like quite a bruiser today! poke that belly out and the picture is complete.

and yes, he IS drinking from a bottle. he has to stay so hydrated that they have told us to worry about breaking the bottle habit down the road and just get him drinking (and the bottle works much better with one hand...). if i have learned nothing else in my parenting life, i have learned to be really careful what you swear YOUR child will NEVER do before you have children...:)

another thing I am grateful for: my children love music. they run for the guitar at mom and strow's house, they bang on the piano when given any chance, they find uncle jamie's banjo wherever it has been hidden, they make anything into an instrument or microphone, they beg to hear the indigo girls or the dixie chicks (ask ella brooks to sing "galileo" by the way, it is hilarious and no, I did not let them learn "goodbye earl"). we clap to the beat, dance a bit and try desperately to snap. the other picture you see is on thanksgiving day with our dear friend, Len Clark, playing the guitar with heath. music has always been such an important part of my life, of my family's life, so to know that they have a song in their heart warms mine. no telling where that song in heath's heart comes from exactly, but it sure is melodious.

we put up our christmas tree today. not always a big deal, i suppose. but last year our parents "put up" Christmas while we were in the hospital, trying to bring some joy and normalcy to an otherwise devastating time. so, it went completely unstated today (to state all of these moments would frankly be too much for any of us to handle, so please forgive us if we shrug off any mentions of "last year" in the coming weeks), but the laughter and smiles were enough to fill this mama's heart for a long time to come.

there you have it. we have had a really great thanksgiving--multiple delicious meals with many members of our family; drives to salem, va; long wonderful walks together; and much laughter. my hope is that yours was also fabulous, and that you have many things to be thankful for this year. i know we do. we're going to go get some sleep--goodness knows when that sweet fella will decide that the day should be starting--too many things to see and do...

helping friends like we were helped

It was just this time last year when the world as we knew it fell apart. we didn't know if we were coming or going, or even what to do next. One of the things that was the hardest for us, as people whose job it usually was to take care of others, was to allow and even welcome help from others. it would have been in my nature to say, "oh, no thank you, we'll be just fine..." but somehow i knew deep down that i was sure i was going to be fine and that, frankly, i could barely move let alone think straight about bills and deadlines and plans.

our friends, the knauerts, have suddenly found the life as they knew it blown apart by the very sudden death of david, their beloved husband and father. david (who was a ncaa swimmer at harvard and long distance runner always) had what is believed to be a massive heart attack while jogging in atlanta on saturday morning and died. He was 38 years old. He leaves behind his wife, Leigh, and his four children, Peter, Lily, Harrison and David.

David was our classmate and good friend in seminary. He actually did the same internship at Central the year before me and then stayed on as a youth advisor. We spent alot of time together. I spent alot of time with his children and wife. We hadn't seen each other in a while, but i have always held them in my heart as dear friends. This is simply heartbreaking. As i wrote last night, I still don't really have words for how heartbreaking it is.

Even harder still--wondering what will happen with his sweet family? They were in Atlanta getting ready to leave for Brazil, where David would teach at a university as they served as Presbyterian mission workers. David just finished his ph.d. at duke last May. He has been in grad school for 10 years, and they were just embarking on this next part of their journey together as a family--serving God (see the post directly below to learn more). Because of all of these factors, I have come to understand that they are now in a really tough spot financially. They were waiting to go to Brazil, and had just sold their house here in durham as they were getting ready to leave for brazil. So not only do they have to figure out how to cope with losing their father, but they will have to worry about where to live, and how they will live.

When we were met last year with Heath's diagnosis and heart transplant, people dropped everything and helped us--some knew us, some did not. One of the reasons we got to where we are in the emotional and physical state we are now is because we didnt' have to worry about the huge bills that were piling up. Thanks to that Good Samaritan Fund at Cary pres and the generous long list of folks who gave to it (we've never actually seen a list of who gave, but I know it was many of you...thanks).

First Presbyterian Church here in Durham is doing something similar for the Knauerts. I just learned the details, and I thought I would pass it on to you:
Donations to the Knauert Children's Well-being Fund can be sent to First Presbyterian Church, 305 E. Main St, Durham, NC 27701. Make check to First Pres but put this fund in memo.

Donations are tax deductible. No pressure, but I thought you might like to know of a family who was giving of themselves who now needs help.

The service to celebrate David's life will be at First Presbyterian on Friday at 4pm. I ask you all to hold his family and friends in your thoughts and prayers.

love and blessings to you all. carrie

life is so fragile--a prayer request for friends

on saturday morning i took a cpr class at westminster. it was really helpful--but i must admit the process of learning cpr was quite emotional for me. as the video went through "scenarios" in which cpr might need to be used, i found the emotion welling up in me remembering some of the scariest moments of my life this past november and december. i found myself suddenly so overwelmed thinking about the fragility of life, but then in the same instant thinking about the great enormous joy in this very same life.

i got home, and heath fell asleep on me, sheer joy to any mama, really (unless it is the middle of the night and he or she should be IN THE BED!!). I heard chris say, "oh dear God..." and he turned the computer toward me to read an email, unable to speak.

in horror, i read that our friend and colleague from seminary, David Knauert, had died suddenly that morning while jogging in atlanta. how could this be possible? but it was true. David was in atlanta finishing preparations to go to teach the bible in a university in brazil. As he finished his phd at duke, he and his wife, Leigh, and their 4 children were called to be Presbyterian missionaries.

I don't really have words right now to say about him. You might be interested to read his own words, and you will appreciate him:
http://www.pcusa.org/missionconnections/letters/knauertd/knauertd_0910.htm

what i do ask for are your prayers for his family in such a sudden, tragic time.

we have learned how important it was for us to have those who knew us and didn't know us at all praying when we weren't sure we could or even what or how to pray.

a strange anniversary

A year ago yesterday. A year ago yesterday I was meeting my best friend's new baby for the first time in Black Mountain, getting to see good friends and family at Montreat, and I was wildly excited, strangely, about coming home to pack boxes for our move to Durham. Chris had stayed home to take Heath to his 9-month check-up.
And then the world as we knew it, as our families knew it, came crashing down suddenly, with the words, "you know, I think I hear something a little funny, let me get another colleague to listen too..."
As we realized what day it was yesterday, i don't think we knew how reflective we wanted, or could be. I said, "um, Chris, do you know what day it is?" "Yes, Carrie, of course I do." We left it at that. Then we went about our day--as regularly as we know how these days. we picked eb up from school, raked leaves, even had a little gelato date with friends (well, the girls did...).

Somehow, though, the gelato tasted a little better, the raked yard looked a little more beautiful, the leaves felt a little fluffy-er as we jumped in them, and the children's giggles as they jumped sounded like music to our ears.

I snapped a picture of eb helping heath up the stairs, as I teared up, thinking about the year we've had and particularly about all of the people and things for which I am so deeply grateful.

I am grateful for our families who have walked alongside us, holding our hands, crying with us, laughing with us, giving up so much of themselves to try to make this ok.
For our friends all over the world and right here who rushed to our sides, who prayed.
For the communities of faith who cared for us and prayed and had faith when we could barely hope.
For the pediatricians, hospital doctors and nurses and staff who have and continue to care for us so well. Today I am particularly grateful for a thorough pediatrician in Greensboro (thanks, Brian) and for the kind, hopeful way the folks at UNC delivered close to the worst news parents could hear a year ago on this day.

I am grateful for the hilarious conversation/playtime that is going on in the room next to me while Chris and Ella Brooks play with her dollhouse--and heath comes running over periodically to steal a doll or show us them his belly.

A year ago yesterday I remember calling my dad as I was rushing home from Black Mountain to take Heath to the hospital and saying, "dad, i don't know if we'll be able to call to say happy birthday tomorrow..." and today I will rejoice in calling him later to talk about what a lovely day it is on his birthday.

Later today Chris is going to take heath to the dedication of a local habitat house. They will participate in the beginning of someone's else's dreams for a new way of life. Fitting, I think.

pictures for today's post

ah, the circle of life

we've had a week, well, several weeks, of pretty serious ups and downs in the tuttle household. that is why i haven't posted anything for a while--I didn't really have words...

yesterday afternoon we had to put our much-loved dog, zeke, to sleep. those of you who had been to our house in the last few years, particularly this year, were well aware of the "wait, let me put the dog up in our room..." schtick. Zeke had always been a little "protective" of us, but unfortunately, his erratic and at times threatening behavior was only increasing toward anyone deemed "stranger" (um, pretty much anyone or thing who wasn't our immediate family). After consulting with a dog behaviorist/trainer and our veterinarian, we learned what I think we already knew in our hearts--Zeke's troubles were completely temperment and not behavior that could be changed. We agonized, but we knew what we had to do. We have shed many, many tears in the past 24 hours. Although he may have seemed "threatening" to others, he was our friend and our other family member, as Ella Brooks continues to call him. He loved us, perhaps to his own detriment. He snuggled with us on the bed, delighted in late-night walks, loved to have his soft ears scratched, and kept Chris company all those times I was on youth trips. The night before Heath crashed last December, I found Zeke under Heath's crib, perhaps knowing what we would know soon after. He slept in Heath's room while he was in the hospital. We were his people. He was our friend. We will forever love him for who he was to us.

Chris and I are now crying on the couch while watching the world series.

We had some good news, though, too. I took Heath into a routine cardiac clinic check-up this morning at Duke. After making it very clear to everyone within earshot how angry he was about being weighed, measured and having his blood drawn again, he settled back into his usual pleasant self, just in time to find out that he is doing so well that he is going to be losing 4 medications!!!! We will be easing out the iron, enalapril (one of the blood pressure meds), prednisolone and valgancyclovir over the next few weeks and month! YEAH!!! We don't go back for a check-up until February. Then, we'll do a cath maybe a month or so after that and if all goes well--not another cath for a YEAR!

we know that there is alot of time (and sickness season) between now and then, but that is pretty darn exciting. the kids have h1n1 and regular flu shots and Heath is getting synagis, the monthly shot that is regularly given to premies during winter months to help stave off rsv. And we're starting to try to stick closer to home with him too (my awesome bible study group just gave me the most incredible care package for being home more--thanks!!). This is tough because he would like to go out and flirt and hug pretty much every person he sees. Yes, he is my child. If you say anything about his belly, he lifts his shirt to show WHOMEVER is in front of him (yesterday it was random ladies at the table next to us at Rick's). I am not sure whose child he is when he does that...(Chris??)

speaking of contagious illness, I don't think i have written about the "chicken pox episode." it appears that eb sat on some sort of biting insect or something because she suddenly had little red bumps all over her legs and torso one evening. since she had been vaccinated, we weren't sure how chicken pox would present itself (she didn't feel bad), so to be cautious we and our wonderful pediatrician and the heart folks at duke decided to quarantine eb and me at my mom's house (bless mom and strow--they are very good sports with these sorts of things). we had to go and get her "scraped" at duke (they had to do it in our car because we needed it done quickly and they had no room in the inn) to see if it was pox or not. oh my. it was a little scary because it could be very bad for heath to be exposed to something like chx pox. but alas, it was some sort of bug bite (over 50 of them--poor itchy girl) and we were reunited again for more fun, tuttle family adventures.

we had a great time celebrating ella brooks' birthday. you'll see some pictures of her party with her friends. mom and pat were the fabulous grandmas with music, art and lots of fun! it was a great time for all, especially eb. heath actually slept through the entire party, which was PERFECT since we didn't want him around so many people. We did a little family celebrating at the birthday hut (long story) at mom and strow's the weekend before.

on monday our family went to burlington so I could speak to the Presbyterian Women at First Presbyterian. it was so wonderful to be back with our dear friends in burlington--and they tolerated my lovely children getting excited about the microphone and lecturn and piano after the lunch! it was an emotional day too because it was the first time i had spoken in public about all that has happened with us in this past year. it was hard to re-live those events in november and december of last year, but it was also helpful to see how far we've come--only with the help of others and by the grace of God.

step by step. hour by hour. day by day. if i have learned nothing else, it is to appreciate all those moments, especially the little things.

carrie

fun at the waterford fair

So we had a great visit to waterford, virginia, to the annual Waterford Homes Tour and Crafts Fair. Waterford is a village where my nana has lived for almost 40 years and it feels as much like home as any place for me. I was so excited that we'd be able to go this year! We had to be careful about germs and we kept Heath out of most of the big crowds, but he even got to experience the fun of the fair. Heath and Ella Brooks enjoyed great time with cousins, great-grandmother, aunts, uncles, grandparents and great family friends. Other than Heath not sleeping very well, both kids did beautifully. My sister, Cindy and her fiance came from Macon, GA, and she posted these pictures: http://www.facebook.com/home.php?ref=home#/album.php?aid=2068666&id=44301602

We had a great opportunity for a new friend, Kathy Zavatson, to do a photo shoot with mostly the kids, but even the whole family. You can see some of the pictures in her blog:

http://www.bellies2earthphotography.typepad.com/

As you can see, she is a fabulous photographer. If you live in the dc/northern virginia area, you should get her to do some photos for you!

It was such a great feeling--bringing tears to our eyes multiple times throughout the weekend--to see our family laughing, drinking wine (not the kids, of course!!), enjoying one another, and doing something that we have done for my entire life (roaming around the fair). the way you look at the world changes when you have been where we have been in the last year. the way that you enjoy the very simple things in life changes too.

that is all i have to update right now.

blessings to you all.

carrie

beautiful fall day

A quick tuttle update on a beautiful fall afternoon! It is really too gorgeous to be inside on the computer, but Heath is napping and Ella Brooks could use a little down time before we head back outside...



We're doing very well!

Today we're packing for our annual trek to the Waterford Fair in my Nana's town in northern Virginia. The rain has stopped, hopefully, and we look forward to a great weekend away with my family.



It has been a few weeks of visits from family and friends--what fun! Uncle Jamie returned from Haiti for a few days tacked onto the end of his trip to southern Georgia representing MFK (Meds/Food for Kids, the organization he is working with in Haiti) for a Georgia peanut convention/farm tour. Our dear friends, Pen, Lindsey and Wells Peery came through town too, so we got to have a good short visit with them (and a little dance party for the kids!!). Bob came after school the same weekend and stayed for a couple days, and a great treat was that Aunt Diane (Bob's sister) was able to come down from Salem, VA, to see us as well. Aunt Sarah and Uncle Robert came over for dinner...My Aunt Nancy was able to come visit on Monday--and we got to have a good visit with she and my cousins Margaret and Rodger at my mom's house too. Then, Aunt Jo (Strow's sister) came into town on Thursday and we had a fun lunch date with her too. Wow--does that make you tired? During that weekend/week, several people said, "wait, you mean you have a different family member here now?" It was actually a FABULOUS time with everyone!!! Never a dull moment in the Tuttle household, that is for sure.

Our friend Rodger Nishioka was here doing a "spiritual enrichment weekend" at Westminster (he had been signed up for this for a couple years, actually), so we got to see him and catch up on all the fun happenings at columbia. Even Rodger was unable to escape the lovely Tuttle evening dance party...although he only had to watch.



Perhaps we are also getting all our visits in now as we prepare for flu season. Apparently the flu is running rampant around this area. Reality has begun to sink in that it is about time to start to hunker down for flu season with Heath. That is particularly tricky because the sweet guy is about the biggest extrovert I have met in quite some time!! (and you know me--that is saying something!) He doesn't meet a stranger. I just have to figure out how to say, "please don't touch the sweet toddler who is trying to talk to you..." We probably won't stay in quite as much as last winter, but we've already stopped taking him to church or to pick EB up at school or putting him in too many shopping carts.



Ella Brooks taught Heath how to say, "poo poo," for which I am so grateful (very sarcastic). Ah, older siblings. It is actually pretty funny, so I am trying to master the fine art of the "parent sternly saying "no" and hiding how tickled your child has made you. Thankfully, right now he is pretty obsessed the word "ball," so I can distract him easily. He has a VERY LOUD VOICE and yells at people from our screened porch. He is pretty hilarious. I wish you all could see him in action.



That, believe it or not, is my update. No sickness, no heart caths. I hope all updates can be as normal (well, its all relative when it comes to our family, but you know what I mean...)



love, carrie

Carrie signs on!

hello dear friends.
i finally told my dear friends Sarah Beth Christie that i thought i was ready to take over the blog writing, and we realized that there wasn't really a way to switch it to Carrie Tuttle without losing all the posts of the past, so she has allowed me to take over being "Sarah Beth Christie."
so I am writing this from the dining room table in a very quiet house. i shouldn't say that, though, because inevitably one of my wonderful children will wake the moment i post...and the quiet will end.

we are celebrating that we have just gotten news today that the biopsy of the heart that was taken during the cath on thursday looked good! we already knew on thursday that the pressures and numbers taken during the cath were trending just the way the cardiologist want them to go, so we are very happy about that.

we are also learning a little more about the ups and downs that will come along the way. as we celebrate the heart being in great shape and getting through the cath, we have been dealing with a tummy that just won't work quite right. After taking an extra antibiotic about 4 weeks ago to fend off a potential infection with his cough, Heath started having tummy troubles. It continued, and after all sorts of tests and long nights up and not having much more than white bread and pedialyte for a long time, it seems now that it might actually be caused by one of his medications. We had been warned that this could happen periodically, even if no meds had changed. So we have our ups and downs. As our wonderful pediatrician said this week (after one of many, many phone calls trying to figure his issues out), heath is just probably always going to take longer to deal with these sorts of things than most of us. We rejoice in a healthy heart, though, and with that we'll take each day as it comes.

Ella brooks has LOVED being back in school at Westminster. She is going 5 mornings a week, and tonight was making us all sing the "wake up song" as we were trying to get her to do the opposite. She is pretty hilarious these days with her "almost 4" self. She has been a very sweet sister to Heath--even eating some of the BRAT diet just so he would follow his big sister!

Heath is talking without actually saying words that we understand. He is so demonstrative that you pretty much know exactly what he is trying to say, though. He is a funny guy--right now "DADDY" is said all the time with great inflection, which I personally LOVE in the middle of the night when he wakes up! I roll over and say, "um, Chris, your son is calling you..." :)
He said "water" the other day and "ball" is heard loud and clear in the neighborhood. He waves at every car that passes our house--which is pretty hilarious. Step by step. Deep breaths and good laughs along the way, without nearly as many tears. We'll take that!

we've had some great visits with our friend Mindy and our friends Gair, Rick and David. We have so much enjoyed our great neighbors--and being the house where the bus stops, so the kids can play, play, play together. Life is good.

As we have thought a little more about where we are right now, we realize that we would be in a much tougher place without the good health insurance that we are provided through the PCUSA. During this tough time of debate and questions about health care reform, i urge you to pay attention to the debate and think of all the people with illnesses as dire as Heath's who go untreated or people who go bankrupt trying to save their children. We met them; sat alongside them every day in the hospital. Ours has not been an easy road, but there are many more people in this country who struggle every day to pay for meds or treatment.
ok, enough. blessings to you all.
carrie
will post more pics soon.

Heart Cath on Sept. 10

Just a quick update to let everyone know that Heath is scheduled for a heart cath. tomorrow. Please keep Heath and everyone in your prayers that this new "routine" is simply that...routine.

Blessings, Gran Sarah

August 30 Update

A wonderful update from the Tuttles....

Hi Gran SARAH!!!
So Chris looked at me yesterday and said, "um, we haven't had a blogupdate in a while..." and i said, "well, do you want to write it?"and he gave me his very sincere face (those of you who know him well knowthis silly fake sincere smile) and said, "oh, but i always like it when youwrite it..."
so, here are some pictures for you--i wish there could be more because there are so many pics of all of our wonderful family and friends who we have spent time with this summer.we've had such a lovely summer. and such a busy summer. As ourlast blog update left off, we went to Harker's Island with chris andheath and ella brooks, mom and strow, and had a marvelous time. Then, Ella Brooks and I went on a girl adventure in our new mini-van (oh yeah, we did it) and took the ferrys up through the outer banks to kitty hawk to meet up with my extended family (or "the cousins and pops" as she said the whole time). She and I had a much-needed respite and girl time, even in the midst of staying with 20 other family members in one house!! I hated that heath and chris couldn't come, but it was so great to see everyone. Pat came to Durham to stay with Chris and Heath, and they had a really good week together.I think through those times with family you could perhaps have SEEN the stress of the last year roll off of all of us amidst the beauty and calm and laughter and hugs.

We were back in Durham for a couple weeks. We got some good time withUncle Jamie before he went back to Haiti, went to a Bulls game withAunt Sarah (it felt like, "Heath takes the Bulls Park..."), enjoyedthe annual Barnes Picnic, and celebrated our good friends the Irons inburlington before they left for Italy. Then, I even took the kids upto northern virginia to spend some really good time with Nana, Pops(my dad), Uncle Pete and Aunt "mona", and carson and emma and Uncle Al, Aunt Laura and "D" (and Kat, who Eb likes alot!). Then lastweekend we had a great time in Black Mountain celebrating bob'sbirthday! and got to come back in time to celebrate our dear friendLen's birthday *(and uncle jamie's from afar).I tell you all this to say that we got to have what I can only imagineas a "regular" summer.We had sacred moments in the midst of "regular" times because we knewthat we were lucky to be there--watching a little boy try to run intothe waves giggling, watching him dance (he has quite a bit of rhythm)to the Dixie Chicks in the car (long story and very hilarious), tearing up as he and ellabrooks embrace impulsively, hollering at him to stop climbing onsomething, enjoying the splendid little person that eb just is. For all those moments we are grateful.

OK, so you are probably wondering about actual health issues--Heath isdoing quite well. He has had a yucky cough for the last 3 WEEKS,which has caused his family a bit of stress, but doesn't seem tobother him in the slightest. The poor folks at Chapel Hill Peds hadto endure our "please check him and make sure his chest sounds clearvisits" quite a few times, especially our dear friend and pediatricianAndy Dunk! He has come through it beautifully. Our cath has finallybeen set for Thursday, September 10. Hopefully if all goes well andlooks good, we'll even be able to lose a couple of the medicines. Hehas a few more teeth, and he has said a few more words (his version of"bubble" is hilarious). By the way that you can tell that he fullyunderstands everything and thinks that he is communicating veryclearly (specific noises and pointing or handing you your shoes andmaking his door turning motion), you expect him to one day just comeout in a full sentence. He actually brought Chris the black leotardin one of these pictures with the "put this on NOW" noise--promise.we do know that we'll have to start being a little more conscious ofour immune-suppressed guy now that school is back in full swing andthey are expecting issues with H1N1. He willl have all those shotspretty soon, and we'll just have to figure out how to be home a littlemore and maybe not journey into the world quite as much as we havethis summer. We'll take that as we go, though, knowing that we dowhat we have to do.

Perhaps our best medical news comes from a different angle this month. We received word the other day that after a final round of tests EllaBrooks is completely clear of any of the possibilities that could cause any heart condition. I don't think i had realized how much that was weighing on my own heart until I heard Chris' teary words in the phone and burst out into tears myself. My poor friend Amy and the children who were riding in the car with me perhaps did not get it immediately, but, they all know i am a little nutty anyway. :)

We're doing well and hope the same for all of you. Thank you fortaking the time to still read about our journey. Thank you for your continued prayers. It has been such a joy to see many of you this summer.

love, Carrie

July 13 Update

A great update from the Tuttles....

Hi Gran Sarah--

I am sitting at the kitchen table listening to Heath yell (he is still not quite talking yet, so it sounds like a mix of sounds and names) and run around, occasionally yelling myself, "Heath Tuttle, get out of the dog water!!!" (that seems to be his most fun new hobby--dog water splashing--yes, he is a regular child!!). I just downloaded a ton of pictures and realized that I hadn't written a blog update recently!

All of the Tuttles are doing very well. As you wrote after our visit to Burlington, they were so impressed with Heath's progress at his appointment a couple weeks ago, that we don't even have a heart cath date because they weren't very concerned about needing one immediately! YEAH! He is a busy, busy guy. You can tell he understand everything (read: turns around and smiles and walks away for a few minutes when i yell to get out of the dog water) but he is still not talking a ton. No one is concerned, but we are going to go ahead and do a little speech therapy to maybe help jump start the process. I am pretty sure that one day he is just going to look at me and say a complete sentence. He still only has 2 teeth, which is a little funny-looking for an 18-month-old, but not too much of a big deal. We are going to take him to a pediatric dentist to make sure all is well in the teeth department. BUT, if those are our two major issues, we'll take them!!!
He is hilarious. He is such an extrovert. When we go to Costco or another store, he just waves at strangers until they see him and wave back. It is amazing to see the smiles on their faces, and they don't even know what a miracle he really is...And he is a climber, like his Uncle Jamie was at his age, which makes for a little stress for whomever is supposed to be watching him. All in all, you would never know what he has been through if you didnt' see that little scar peeking out from under his shirt. That works for me.

We have had quite a busy summer for people who thought that they would be house-bound with an immune-suppressed child. I sent a bunch of pictures that capture what we've been up to so far. You can see him giving his Bop (Chris' wonderful 97-year-old grandfather in Black Mountain!) a high-five. We've been to Black Mountain a few times to see Chris' family and also several of our best friends and their children who were at Montreat for various reasons...We got to meet baby Sam Lamar for the first time. My college roommate, Page, and her kids were at her mom's house in Greensboro down from Connecticut, so we made the drive over to see them, which was a great day. We have enjoyed playing in our new yard with lots of friends. We were so sorry to have missed Mimi and Papa (Chris' parents) stint as the Grand Marshalls of the Montreat 4th of July Parade. We couldn't make it work to get there, but we were thrilled to have a wonderful visit from our great friends the Oedys! Yard projects have begun with a huge mountain of mulch (as you see in one picture) that was delivered by an enormous dump truck that made Ella Brooks' day. I was even able to serve as liturgist with Chris at Westminster on July 5--which was my first time back in worship leadership since October, and it was really nice.
Chris is in the middle of a DMin class with Barbara Brown Taylor at Columbia Seminary in Decatur. He is enjoying the class, and perhaps a little extra sleep, but I think he misses his crew at home! He came home this weekend to see us and got caught in my fury of car research & shopping (his car died the day before we moved to our new house in May), and after spending all day on Saturday looking, we purchased a "very cool" used Honda Odyssey. So, yes, my odyssey as an at-home mom continues with a vengence! :) We'll get to have a quick family trip this weekend, and then Ella Brooks and I are off to Nags Head to the Miller/Rhoads family beach trip, while Chris returns here with Heath and his mom comes to take care of him.

Speaking of the care of children, I am constantly reminded that it has truly taken a very large village to get us to the great place where we are right now. From my best buddy from high school, Wendy, coming for the moving weekend (can you imagine volunteering to come visit to MOVE someone??--she is awesome) to our wonderful families, I am so grateful I don't ever know how to say "thank you." Sarah Edgecombe (Chris' sister) stayed with us ALL last week and endured my nutty car shopping and gave me the courage to work on our children's sleep issues. My mom, strow, nana and uncle jamie (who is coming home from Haiti for a month TONIGHT!!!) are now taking a turn of helping us for this week. Chris' mom is coming next week to stay with Chris and Heath while EB and I take a little vacation...so many people make it possible for us to function. I tell you this, I also have a great new respect for single parents--I don't know how they do it on a day in, day out basis.

As i believe we wrote in another blog update, Heath and Olivia got to meet finally (she was his roommate in the PICU who we have talked so much about). There is a picture of that too and one with Ella Brooks and Whitney, one of the awesome physical therapists at Duke. Olivia was able to go home to western NC this past week and is doing well. Hooray! I ran into Chad Stewart, one of the wonderful cardiologists who cared for Heath during his hospitalization, the other day. In fact, Chad was the on-call fellow the day that Heath crashed and ended up on life support. It was so good to see him! We also saw Michelle, one of the ecmo techs who took care of Heath ALOT, at Target last week. Oh, we love our friends from Duke. it is amazing how much like family they feel...I guess they should after all they have done for us.

I am thinking about my Burlington youth who are at Montreat this week. I hope they are having a wonderful time. I love those folks!

Ok, i just realized that it is time for Ella Brooks to be AT school. Those of you who know me well, know that it is the same as usual (late--trying to do too many things!). Some things never change.

love to you all,
carrie

Monday Surprise!

Summer Greetings Folks!

Just a note about Monday's wonderful suprise. Carrie called me this morning and she and the "babies" were able to stop by the church today! Of course we were all thrilled to see them! It took Genie and I both to keep up with Heath and Ella Brooks-what two busy little folks! Whew! We enjoyed seeing the new building spaces together(particularly the youth spaces that Carrie envisioned-especially the stage in the Sr. High room!). Ella Brooks insisted on going to a "classroom"- a.k.a. her old daycare classrooms. We carefully did a "drive thru" in CDC with Heath in a stroller so we didn't pick up any "bugs"! Better safe...

The best part of the day is to see Heath looking so well and walking so fast his little chubby cheeks wobble when he walks! Ella Brooks was quite the great big sister - sharing her goldfish crackers with her little brother. What a great sight!

It was also great to hear that the Tuttles love their new home, all the wonderful space and enjoy being the proud owners of only ONE home!

Carrie reports that Heath is doing so well that his next heart cath. looks like it will be not be as soon as the doctors expected. The doctors felt like Heath was doing so well that the heart cath. could wait!

We all enjoyed a great visit today. Now matter how long the Tuttles can stay it somehow seems too short a visit! Thanks Carrie, Ella Brooks and Heath for stopping by-we always love seeing you. "Gran Sarah" just never gets enough of those sweet babies!

Blessings,
A very happy "Gran Sarah"

New Tuttle Family Update!

A great update from the Tuttles!

"I have downloaded some pictures today, and I thought I should probably write an update for you, since SO MANY FOLKS have asked about why we haven't had a blog update since April. Sorry. it has been such a busy time for all of us, I think!!

I am writing this note from my kitchen table in my new house--2 Breton Place, Durham, NC 27707, by the way. We love our new house. It is so much good space, and it is just perfect for all of us. We hope we'll live in this house for a VERY long time! That is a really nice feeling. It is also a nice feeling to not be juggling the details of 3 houses! It was starting to make me a little crazy (yes, many of you are laughing about whether this would have been the first time I thought I was a 'little' crazy, I know!).

We closed on the Greensboro house on May 28. We had a lovely morning clearing out the rest of the yard stuff with some of our good buddies, the Burris family, and we are grateful to Betty Rissmiller, who took such good care of us in getting that house sold! Once again, thanks to our wonderful families and friends, we got moved on memorial day weekend to our new house (and celebrated a very exciting 6th wedding anniversary in the middle of mounds of boxes!).

The guys from TROSA moving company were awesome! I am constantly "moved" by how generous our families (and friends) have been to us during this crazy roller-coaster time in our lives. We really couldn't do it without them.

Our toughest time recently has been in the very sudden death of our dear friend, Bill Bartholomay, who chaired the search committee that brought Chris to Westminster. He died suddenly on Memorial Day afternoon, and we ask you to keep his family in your prayers. I will say i can feel myself smile as think of the glorious way his life was celebrated at Westminster last Monday morning.

"How are you really doing?" folks keep asking. Really, fine. Tired, yes. Heath's health continues to improve. He is still not sleeping very well, although we are realizing that it might be due to some bad sleeping habits (yikes, normal kids stuff!) and not anything else. We had a scary night 2 nights before we moved with an ear infection that kept him up all night. My instinct told me it was not like the last emergencies, but it is so hard not to feel your anxieties rise once you have been through all that we have with his health. He is well-recovered and giving us all a run for our money. Anyone who is around him says, "wow, he is BUSY!" He is walking everywhere. We were also given a slight break on the getting out in the world stuff too. We were able to start going to church at the 8:30 service (less people) this week. He was so excited. When we were in the car later, Ella Brooks said, "Mom, it was so much fun to have Heath at church today!" It made me smile. it is funny how we still cherish the little things. Ella Brooks is doing very well--she is so tall, and full of mommy-ing and orders (I can't imagine where she gets that from...) She is such a joy.

We have been excited to get to see old friends recently (the picture is with Dana and Caroline Irons)--friends from college with their kids, from Burlington, from Greensboro. We have even been able to get out on the town a little bit, thanks to our dear families and friends (Beth and Barrett Patty even got a night of medicine, play and bed this weekend! thanks!) Mattie Anne Walker, one of my former youth and now college student, has been coming to help me out with babysitting all semester and this summer as we have moved, which has been such a blessing. Ella Brooks will say, "is it a 'mattie anne' day?" and it makes me laugh. Her coming made it possible for me to get out of the house a little and get some much-needed moving stuff done. And tomorrow, we're headed for the first of two short trips to black mountain/montreat to see family and good friends coming in from far away!! We can't wait!

We watched today as the green lumina was carried away by the WUNC donation people. Yes, it finally was time to say good-bye when the words "stranded" and "blow up" were used in the sentence by the car guy...luckily we have use of a few cars of family members for the month, and then we'll start CAR SHOPPING! The fun never ends. But, I am reminded as I say that that it is normal life "fun" stuff. We're grateful to be there for a while.

Heath has an appointment on June 25 at Duke, and we're waiting for a date (probably somewhere around then) for his 6-month cath! I can't believe it. I went to get medicine the other day at the Duke pharmacy, and ran into one of the cardiologist fellows who took such good care of us. It is amazing how much the folks at Duke feel like family. On another wonderful note, Olivia, Heath's roommate in the PICU who we have asked you all to pray for periodically, has been released from the hospital. She had a heart cath today, and hopes to be headed home to Asheville soon! We are hoping to have the two of them meet next week sometime for the first time. We'll take pictures, I promise!

Well, there you are. I am sure there is something else I would have liked to write, but Chris just said, "are you still writing the blog update??" That is my cue.

Blessings to you all. Hopefully we'll have even more good updates soon. Love to you all. Cherish every moment--we're trying!

love, carrie"

A note from Carrie....

We are doing quite well. Getting ready to close on our new house this week--so excited! We're hoping to have sold our Greensboro house (under contract!) and we're getting ready to move out of this rental house. So many residences! The other day the insurance woman said, "Mrs. Tuttle, we got a great final number for your new house's homeowner's insurance!..." then we worked through that one. "What do you want to do about the homeowner's insurance? when do you want to stop it?" we finished that one. Then, she said, "hmmm...now what about this other house in Greensboro, what do you want to do with that one?" (oh yes, we need to keep that too..." :) It made me smile.

We had a really nice weekend. Chris' mom was here, which was so nice. ella brooks, chris and i got to have a nice evening out with some of the folks from westminster at a supper club. This afternoon when they were showing our rental house for the 14th time *(UGH!!), we went out to my mom and strow's house. We met up with my cousin, Margaret, and we went walking at the Haw River. it was so beautiful, and the moment that we watched Heath stick his fingers in the water with such joy was a beautiful moment. Then, that crazy, fearless guy started trying to WADE in the WATER!! He was so excited. I sent you quite a few pictures of our time in the water. Ella Brooks has so much fun too. It was a such a perfect afternoon, and i wanted to share some photos.

I sent another picture of Heath in the refrigerator. Everyone always asks about what we do on a daily basis. This is one of our daily activities--dragging my sweet boy out of the fridge. He loves to reorganize the shelves. I know it is bad for the environment, so I try to shut it quickly, but he sees the door open and bolts for it! It is pretty funny, and if you see one of us, you can ask us what his favorite thing in the fridge is...i won't print it on the blog!

All in all, we are doing well. Heath is doing well--other than still not sleeping very well. He fought us until 11:15 last night! But, if that is our worst issue right now, I suppose we'll have to take it.

love to all.
carrie