joining the world...

So we went to church today. That isn't really that different from any other day since Chris works there and EB goes to school there. The difference of this day: Heath joined us. He got to go to church for the first time since last summer. We had been at a few events last week, but it was really cool to take him to the childcare room and drop him off like the other kids. He was the first one there and started to cry when I left. Ella Brooks said, "mommy, i will stay with him to make him feel better..." that is a good sister. And they had a wonderful time.

this is a good day.

we have had a great visit with Aunt Diane (Bob's sister) and Chris' dad. They are here until tomorrow. Chris and i have even been able to get out on the town a couple times this week--shocking. On Tuesday we went to a meeting at Duke hospital as they were bringing together past PICU patient families to gather information about our experiences. It was really good to see old friends (the Landreths) and to share our individual and collective experiences. I stayed talking with several folks until 10pm. It also reminded me not to be completely lulled into forgetting what Heath (and our family) have been through--not to forget to be thankful for each day. It is amazing how easy that can happen. I suppose there is a fine line--you want to be as normal as possible but also to not forget.

We have had a busy few weeks--full of world-joining activities. It started with participating in the Elonthon a few weeks ago. I spoke to the wonderful group of Elon students who were dancing all night to raise money for Duke Children's Hospital. We were one of their "miracle families." I think they are the "miracle" to be such great people giving up so much of their time to help others. The kids had so much fun and so much attention--Heath even ran on the stage. EB continues to be scared of the chick fila cow (long story). Our friends the Hills and the Childs came to hear us. It was a very cool experience--I highly recommend coming to support it next year (I will give more details).

We got to spend a fun time with my Nana visiting at mom and strow's a few weeks back--and lots of good time with "ama" while she was on her break from year-round school. EB got to ride her first horse while on her school field trip. Our dear wonderful neighbor, Bob Sneed (the kids all call him "Bob Sneed" always) re-made a dollhouse that he had made for his daughter 30 years ago for Ella Brooks, and he delivered it, which was a special treat.

And then, we went on a trip!!! AND, our children slept through the night each night on the trip!! It is a banner spring in the Tuttle family.

We made our way to Georgia for my sister, Cindy's wedding. It was a such a great time--see the previous post for more details.

I think I love that I have absolutely NO OTHER UPDATES about health. I hope that I will continue to be able to throw pictures and funny stories to you for a while. Our next doctor appt. at Duke (for just check-up and blood work) on June 3.

have a good, good day, my friends.

spring traveling fun with the tuttles...

Aunt Cindy and Uncle Matt were married last weekend--April 24. We had such a fun time with our family and friends. We got to stay in Atlanta and have a fun evening with Ellen and Kimberly (in picture to the left) and their dog, Roscoe, on the way to Macon. Ella Brooks got to help them make a scarecrow. Well, i think she told them how to make a scarecrow because, of course, that is something that we do regularly in our house. The next day we had some time to visit our friends the Lamars (that is Sam with Heath below) and then we had a wonderful Raging Burrito lunch with the Colussy-Estes. Then we made our way to Macon for the big event.

We were greeted by about 5 buses and a huge portion of the teenagers of the state convention of the Future Farmers of America that apparently was also taking place in Macon the same weekend. add a mix of bikers and a few mennonite farmers, and it was a pretty fabulous sight in the La Quinta lobby. We had such a great weekend of celebrating love and family. Jamie came home. Pete and Melinda and the kids flew in on Friday. Strow's sister, Vicky, came in from California. Friends and family were there from all over. We even got to have a tour of Macon from the bride herself on Friday morning! The wedding was lovely and filled with joy. Sam and Strow both gave beautiful toasts. Matt and Cindy were so happy. The kids had way too much fun on the dance floor. I wish I had some pictures of this, but I was so busy running around after them, I couldn't seem to find time to take pictures...let's just say at one point early on, Heath had several bridesmaids surrounding him on the dance floor. hilarious. it was a really good time.
we even had a birthday cake celebration of Carson's birthday at 9am on Sunday morning.

Her name is Angelina...

…and her heart beats so strong in my son’s chest. She saved his life. Her family saved his life. In the most difficult moments of their lives, they made a decision to give life because they wanted Angelina’s young life to mean something and they didn’t want anyone to have to go through what they were going through. We have finally spoken with the donor family.
We had gotten a notification about 3 weeks ago that they had received our letter and were interested in being in contact with us. We filled out a waiver form and waited. On Friday we were with our dear friends, the Oedy family, meeting their sweet new baby, Camille. I saw that I had a missed call/voicemail and said, "972 area code. who could that be?" and Sarah said, "that is weird, who would be calling you from Dallas, Texas?" And Chris and I looked at each other and the tears began to roll.
I called Angelina’s mother (Jessie) back, and we talked for more than an hour. It was a time so full of emotion. I don't think I really have words for it quite yet...I wonder if we'll ever really have words? We had a great conversation--and really felt connected and comfortable with one another. We cried and laughed and told our stories. We talked about our beautiful children. We talked about grief. She is extremely articulate about her journey in this past year through anger, sadness, disbelief, doubt, hope, etc...We talked about Heath's health...
Angelina was 14 months old on Dec. 6, 2008, when a freak household accident of furniture falling on her caused the rupture of an artery in her brain--which caused her to bleed out and her brain to swell. Doctors didn't think she would make it through the night, but she made it for several days and through several surgeries (strong little lady) before her parents were told that there was absolutely no chance for her to live. On Dec. 10, they brought their entire family to say good-bye (she has 2 older sisters, ages 5 and 7 now) and a priest to give her last rites. As everyone but her parents left and they prepared to unplug the machines, someone came running and asked if anyone had asked if they would ever considered organ donation. They immediately said that they would donate anything that might help someone else. Then they had to wait for two more days before the organs could be donated. Jessie said that they wanted Angelina's life to mean something--they wanted her spirit to live on--and they would do anything to help someone else not go through the horror that they were going through at that moment.

I can barely allow myself to imagine the whole situation--but for some reason those two days that they had to sit and wait for the donation surgeries feel so incredibly painful to me. They didn't have to sit there and wait. They could have said, "no, i can't take this anymore..." but they didn't. They shared life. Angelina's heart beats strongly in my son, and she gave him life. "Grateful" doesn't seem to be enough.

Angelina was full of life and spirit. She was beautiful (I will share a photo at some point). People said that they almost never heard her cry--she laughed and laughed. Jessie said that people always wanted to make friends with her in the grocery store (hmmm...sound familiar?). She was the light of her family's life. They miss her more than they can say. I hope that hearing how well Heath is doing can ease their pain ever so slightly—I know it doesn’t bring their sweet girl back, but perhaps it can be some hope for them. We will continue to stay in touch with them, and we’ll hopefully meet in the future.
Now you have names and a story for the people (dad is Miguel Angel) who we have all been praying for in the last year and a half. Please continue to pray for healing for this wonderful family.

Go Duke! and, oh yeah, Happy Easter...

SO, I promised my sweet husband that I would be done with my blog post(s) (I say posts because there is another post below from our trip to Black Mountain--i haven't posted in a while...) before the game started tonight. Hmmmmm...the pre-game has begun. I feel like I have only 4.5 seconds to hit a three point shot to win the game. oh, the pressure...

Luckily, he knows me well enough to know that I won't actually be done. Nor will I ever make a three point shot. I suspect that as long as I don't read this to him while the game is starting our marriage will not suffer...(ok, I just read it to him and cracked myself up--I think I might be a bit tired--but it is STILL the pre-game).

Heath has become obsessed with hats--of all kinds. He wears my mom's cowboy hat and a hat that came from haiti with uncle jamie at some point--and last week he took Grandpa Strow's CAT hat and wore it for 4 days straight minus bed and bath. You think i am being dramatic--you should see how dirty it is! SO, mom decided that she wanted to go to the Duke medical center bookstore to find the kids some Duke youth-sized hats. A couple days after Heath's transplant (Dec. 2008), Mom, Jamie and Ella Brooks had an adventure to the Duke Med. Center bookstore to try to find Duke Med t-shirts (yes, everyone in our entire family wanted one--we were very proud of the fabulous care they had given us so far...). They had a wonderful experience with the woman who runs the store--who fell in love with EB (and vice versa). She called EB her "Christmas Angel." She was there when we pulled up on Thursday afternoon. They remembered each other immediately. She remembered Heath's story and couldn't believe that she was seeing him run around the store. Mom teared up. Heath tried on every hat in the store. Above is the picture of the hats that have not come off their heads since Thursday. In the crazy, fast-paced world that we live in, I am still amazed by the sacred moments that we can find if we just give ourselves a chance. You just never know when that moment will come. We were in the middle of a day of shoveling dirt--we picked up and unloaded THREE truckloads of top soil in our front yard!

We had a lovely, relatively quiet Holy Week and Easter. Chris even got to be home most of Good Friday and all day on Saturday--it was amazing. We had a fun evening and Easter egg hunt at my mom and strow's house on Friday. The kids got to have the traditional hunt that we had in our family when we were kids--with clues and sharing of eggs and a prize for all at the end. Adults get wine while helping the kids search for eggs, or in Heath's case, keeping him walking in the right direction without getting distracted. Really, it is a win-win for all. Ella Brooks did a great job of letting Heath "try" to find his eggs--and helping him. I was very proud of her big sister behavior. She got a suitcase--she is totally excited about having her OWN SUITCASE to go to Aunt Cindy's wedding in a couple weeks.

We had a lovely Easter--Grandpa came to stay with Heath so EB and I could go to church. It was a splendid worship! The music was so powerful--as always with the brass. Ella Brooks said, "that is MY Sunday School teacher playing the trumpet..." Chris' sermon was a really interesting "take" on the text--makes you think the next time you say "that is ridiculous." (you can read it on the church's website--he will be embarrassed that I am telling you this but he is so engrossed in the game that he won't know I am writing this...). I found myself looking around, thinking of all of the "new life" that we have experienced in this place. I don't thank God enough for all of the sacred moments--don't we always let them whiz past us? And then I suppose I let it whiz past again as I attempted to quiet Ella Brooks--why is it that kids seem to wait for the moments of silence in a service to start asking questions?

After a great service and then lunch, our dear friend, Shelley, and I were sitting on the couch in the living room. Ella Brooks grabs a piece of pottery, puts her other hand on her hip, and says in her most bossy voice, "We are now playing church. Which one of you is going to come up here so I can baptize you?" (there was a baptism in church--she was definitely paying attention!) "Come on!" Maybe we should try that in the Presbyterian Church a little more?

Last Sunday, I came down the outside stairs to find our friends Lindsey and Laura waving palm branches in the air in our driveway (somehow we ended up with extras in our car) and stifling laughs as they told me that they were "playing Palm Sunday" with Ella Brooks. Ah, she really is a preacher's kid. But really, I love that she loves the church so much. Shouldn't we all feel so comfortable in our places of worship? Shouldn't we be trying harder to figure out how to bring what we are learning on Sunday into our lives?

So, on that note: Happy Easter. I hope that you find some time to cherish all of the sacred moments in your life--cherish your friendships, your communities of faith, your childrens' moments of hilarity, your family, and even someone who is kind to you as you buy a t-shirt or a hat at the store--and cherish the new life that we celebrate in this Easter season.

Blessings and Peace.

spring trip to Black Mountain

Ella Brooks enjoys some time with the cows at Warren Wilson College's farm. That's my girl!




They even got to watch calves drinking milk from their mamas (that was a big conversation piece later...along with the size of the pigs:) Jack Anderson, one of the student teachers who works with Pat, gave the kids and grandparents a really thorough farm tour. (mom and dad got to have a breakfast date--gasp!)

We got to spend some great time with "Bop," Chris' grandfather (He's going to be a spry 98 in August!), at Highland Farms. What a joy it was to see Heath run to give Bop a big hug as we were leaving! The kids even got to sing Christmas carols with some of the lovely ladies sitting and playing piano in the lobby--nothing like Away in a Manger the week before Easter! I must say, watching Heath and Ella Brooks sing, clap and enjoy making new friends with You Are My Sunshine brought tears to our eyes. That was the song I sang to my sweet boy while he was on life support. What a long way we've come!

We made a trip out to Lake Lure to have a great afternoon and meal (uncle G Robert made a fabulous dinner!) with Aunt "Fancy" Nancy and Uncle G Robert (my paternal aunt and uncle). It was such an absolutely gorgeous day, and we even got to take the paddle boat for a spin. The whole way back to Black Mountain, Heath would say "GGGGGGGGGGGGGG Robert" and "Aunt House." (I think he just kept hearing me say, Uncle Robert and Aunt Nancy's House...as we were making plans to go..."Nancy" is a little harder to say...) :)

cath went well!

Before the cath today! Heath did NOT love the hair nets--mom and dad didn't love them either...

Heath was so recovered this evening that he was able to play "barber shop" with Ella Brooks and Papa (who, bless him, came to help us with logistics with the cath day!).

Heath had a routine heart catharization this morning. The last one was in September--and now it appears that the next one will be NEXT MARCH!! (details in a paragraph or two)

We had to be at the hospital at 7, and the fella even did well with the fact that his loud requests for a "juice ba-ba" upon waking were ingnored by mommy and daddy all morning. He was not so pleased as he started to realize that something was happening, but he really went through the whole process beautifully.

After the cath, I walked into the recovery room a minute or two after Chris to find him holding Heath's leg down and the nurse telling him that we had to keep Heath's leg as straight as possible for the next THREE HOURS!!!! um, the child is two and very busy. at first he was pretty mad (heath, not chris. well, actually chris was not pleased either trying to figure out how we were going to deal with heath's frustration). thank goodness we had our holy trinity of stories: Big Red Bus, Big Red Barn and GO DOG GO! Nope (heath's favorite word right now), he could not GO like the dogs, but he enjoyed reading them OVER and OVER and OVER again. Mommy and Daddy would not use the word "enjoy" but all in all, it was amazingly ok. Heath started pulling at all the stuff on his body and the nurse started letting him help take it off--each time one more sticky thing or pulse ox came off, he yelled, "DONE!" and then he would point to the next thing he wanted to take off. It was pretty funny actually. He even figured out how to get her to give him more "bunny" bandaids when the iv came out. They made "bunny" bracelets with bandaids. Ah, the things you will do to keep a two-year-old happy for several hours...

So, you probably want some medical details--everything looked really good (don't you like my medical terms:)? This time they took pictures of the coronary artery, which can apparently show signs of rejection if things don't look quite right over the years (right now it looks perfect). He seems to be right on track. Only the diastolic pressures were not perfect, but we were told that that takes a couple years to catch up in little ones with transplants. we'll get blood test and biopsy results in a day or so, but all indications are that things look good!

while the cath was going on, chris and i were able to get some breakfast and then visit our friends, the Landreth family. They were back at Duke for a couple days with their daughter, Olivia. Most of you will remember that Olivia was Heath's roommate in the PICU for a long time and had a heart transplant a couple weeks after Heath. She has a broken leg, but they hope to go home tomorrow! We were up on the 5300 unit, which is where we lived for the last couple weeks of our time in the hospital. We saw some of our favorite nurses and therapists--what a joy! It is a weird reality that walking on the 5th floor of the hospital feels like "home." Of course, it is not a home that anyone would knowingly choose in the life of their child and family, but I will sing praises forever for the kind people who cared and continue to care for us in that place.

in the very routine feel of the cath procedure and being in the hospital, there are always those moments of worry in the pit of your stomach that this time will be the time when they find something they don't like. perhaps that is the nature of this beast. but when it does turn out well, the feeling of relief and gratitude is just that much stronger. we drove through chick fil-a on the way home for some lunch, and chris and i both teared up as we were appreciating the moment and looked back to see our "big boy" gazing out the window, as if he were pondering something really important. i'm sure he was--he just seems to get it better than the rest of us. then, he proceeded to shovel the entire bun of my chicken sandwich in his mouth.

back to normal, out of the moment.

So in the words of my sweet, HEALTHY "big boy," I am "DONE!"

Thank you all for your continued love and prayers. carrie

Below--pics from our very fun short trip to northern virginia last weekend to see my family. We went for a walk to see the sheep in waterford (notice heath is the one climbing the fence and yelling "sheep" and trying to get in the fence with the sheep), celebrated birthdays and enjoyed the family time. Ella Brooks said that her favorite part of the trip was "sleeping with Nana," which had pretty much NO SLEEPING involved (while heath was keeping mommy up). Nana said it was pretty hilarious when she tried to help EB learn to count sheep and she said, "nope, that doesn't work, Nana..." Heath and Carson discovered the joy of playing the piano together (see below). A good time was had by all.

the sunny side of life...

tutus, cars, grandmother's hats, a firetruck, and a rooster named "Robert E."...

The sun came out Saturday, and it stayed around for Sunday. It is gone today, and the rain is coming down pretty hard, but I am remembering it fondly. i am more hopeful that it will come back soon...

As i drove the back roads of chatham county yesterday, I could feel the smile on my face and the contentment in my heart. Nothing huge had happened--in fact, my children were laughing and wearing a couple of my Grandmother Rhoads' old hats (and gloves in EB's case) while EB was singing all the words to "We Are the World" at the top of her lungs. We had just had a fabulous visit with my cousin Margaret and her husband Roger and their son, Daniel. We played with their wonderful dogs, put hands in the pond (kept heath from jumping in with the dogs), met their new rooster, watched heath desperately try to drive their not-working lawn mower, and basked in the beauty of the day and the beauty of family. Earlier in the day we had had lunch with our dear friends, the Barnes family, after church. Mimi (Pat) had come for a fun weekend visit with us and bless her, to help with kiddos with aunt sarah while I went before the presbytery to become a MOM MAL (i.e. mom minster-at-large). We had just gotten news that Aunt "Mona" (my sister-in-law) passed her huge test to become an RN--we're so proud. My mom and strow were on the road back from georgia reporting that Aunt Cindy had had a great wedding shower--and that the wedding plans were well under way...

I guess everything is a little sweeter with a little perspective, and a little sunshine.

I am hoping that i will always be able to have that little dose of perspective in the back of my mind as we move along in this life together.

Not that there aren't some tough things going on too--uncle jamie is toiling away in haiti--in a sad state. There are so many troubles there. Last week the daughter of one of the doctors that they work mostly closely with in mfk was killed when the wall collapsed in her school in cap hatien. He is amazed by the hope that he sees in the Haitian people he knows, though. He keeps working hard--and having hope because they have hope.

Heath has had another yucky ear infection--and we haven't slept well in quite a few days.

BUT, at least it is a regular child issue--nothing to do with that heart.

perspective.

I have learned to find joy in the hilarious simple moments with my children--to rejoice in their triumphs (heath is speaking MORE!!!) and the outfits (tutus have come back "in style" in the tuttle household).

Their favorite thing to do right now is put tutus on over their pajamas (particularly lovely with heath's very "boy" footies) and dance and sing to the youtube of "We are the World." Heath likes the rap part of the new one, eb tends to like the 25 year old version. I hear her beautiful little voice singing, "we are the world, we are the children. we are the ones to make a brighter day, so let's start giving..." and somehow I actually do have a little more hope for the world.

blessings on your week, even if the sun isn't shining.

carrie