Tales of a TET Baby: Who Tells Your Story

From very early on in our heart process it was very important to me that Zane not only know his heart story, but that he was proud of it and able to tell his story himself. Imagine my great pride and delight when Zane started school and was able and willing to tell his heart story to his classmates in kindergarten on his heart birthday. He told his teachers about his stripe and even before the most recent leg of our heart journey everyone knew that he was a heart warrior. This was the goal all along, that he could advocate for himself and be proud of the journey he had been through.

Last year Jump for Heart at his school just so happened to be taking place in February when we were just starting to wrap our head around the fact that he would need another surgery soon. This meant he was much more critical of all the flyers and information he got about Jump for Heart. He wanted to know why he wasn't on the flier, why they weren't telling his story at the assembly? He is a heart warrior and goes to that school. Why wasn't he a part of this adventure? I found all those questions valid and on my end I did write a personalized story to send out with this requests for donations. I also sent an email to the random "contact us" email address on the Jump for Heart paperwork, telling them that there should be more options for heart warriors to tell their story. I'd done my good deed, with zero thought that anything would change or that I would hear from anyone.

Little did I know that my little heart warrior was campaigning for himself. Apparently during the first Jump for Heart assembly, when the state American Heart Association Jump for Heart representative came to his school, he told her he had had heart surgery. He showed her his scar and told her he was 4 months old when he had surgery. Fast forward to the end of the school year. Zane was one of the top Jump for Heart fundraisers at his school and his second surgery had been scheduled for the end of May. The same AHA representative came back to their school for a silly string party to celebrate Deer Creek having 100% participation in all their grade schools with Prairie Vale being the top fundraiser. At the silly string party Zane once again chatted up the AHA lady, this time telling her that he was going to have another surgery after school was out.

I wasn't aware any of this was going on until I received a phone call from the AHA representative. Much to my surprise she already knew the gist of my son's heart story. When I asked her if the PE teacher had told her about Zane, her response was "no Zane told me all about his heart story." Teachers are not allowed to tell the health history of their students. Due to Zane's chatty nature she was wanting to see if I thought Zane would be willing to be one of the 40 faces of CHD for the American Heart Associations 40th year of Jump for Heart, which is being rebranded as Kids Heart Challenge. This would entail him making a video telling his story. I thought he would love that and we planned on getting together sometime after surgery.

Surgery came and went a about six weeks post op we planned a day to go make his video. The AHA representative had sent us some youtube videos as examples of what we were getting into. Most of them were parents recapping their stories while the kids sat near by. Zane was quick to ask why the kids weren't saying more, he wanted to tell the story. Fast forward to Zane sitting in a dark room with a huge bright light shining in his face. Zane looked and sounded like zombie, answering with one words answers, and looking completely terrified. I've never seen Zane shy, but that situation brought it out in him. My heart sunk, he was so excited about this experience and I'm not sure anything he said was going to be usable. The representative said she would come out and take some more pictures and footage of him at this school, running and playing, more in his element, so they could have more to use and assured me everything would be fine. They took still photos of him in his AHA survivor hat, his new cape, and this years Kids Heart Challenge shirt. Zane was the first video they had made making him the first person to have this shirt in the world. He was pretty proud of that fact.





Before Zane was shell shocked by the lights I told my version of his story. It's not an easy story for me to tell, there were some dark days that I try to block out. However, I am honored to tell his story. I will forever tell his story because Zane's story is one of hope. It's a CHD story with a happy ending. It's a story of resilience and bravery, but it is also a  story that reminds people that CHD doesn't have a distinct face. CHD doesn't just affect children with multiple other health problems. There is no way to know by looking at a child or at a family whether they have been affected by CHD. It's the most common birth defect so the likelihood of it affecting you or someone you love is very high.


 I am so proud to be involved with The American Heart Association, even in such a minor role. The research that the AHA funds is what literally gives us hope for Zane's future. They fund the research that hopefully will lead to his future valve replacements being less invasion, more safe, and potentially lead to valves that will last longer. As one of Oklahoma's forty faces of  CHD Zane is going to be on all the posters in the district and be in the videos at the assembly. His story will be told and he will be able to represent so many children affected by CHD. This year they are also doing cape ceremonies for every heart kid, at every school, during the Kids Heart Challenge assemblies. The goal is for his bravery to inspire others and give other families facing a CHD diagnosis hope.

Tales of a TET Baby: We Can't Go Back

Yesterday was a hard day. It was unexpected and it took me a minute to figure out why, but I think I've figured it out. When difficult things happen I have a tendency to try to pretend like they never happened. That's my coping mechanism I guess to be able to move forward and not stay smoldering in the fires of whatever trauma I've been through. Once I'm away from it for a bit I can process it and deal with it and move on. The finish line I had set in my mind for this most recent heart journey was Zane being able to do all the things he's been restricted from doing either since surgery or things he couldn't do before surgery because he was too tired. Basically playing baseball and riding his bike, those were the last two hurdles. So in my silly mind I thought, once he can do those things everything will be back to normal. He can do all the things, we're done, we can go back to having a heart kid, but not thinking about it everyday. Well what I realized yesterday, to be painfully true, is we can never go back.

What happened was this, I worked Saturday so didn't realize that the boys had played hard all day Saturday. Riding bikes, playing catch, riding scouters, just a very busy day. A year ago Zane would have woken up on Sunday ready for the exact same day again, all his energy back, ready to go. Three months post op from open heart surgery and a solid six months of activity intolerance secondary to heart failure and he can't recover that quickly. His energy was gone. But remember I missed Saturday, so Sunday morning when Zane rode his bike for maybe ten minutes then came back to the backyard and laid on the slide I was thrown right back to February when this exact scenario played out. Zane had ridden his bike for ten minutes, he came and laid on the slide, not moving, for ten or fifteen minutes, and in that moment I realized, oh no we've missed the signs! He is sick, he's tired, and he's going to need surgery soon.

To see him back on that slide, the sick feeling that I've had for months now, that just barely started to lift in the past few weeks, immediately returned. Is something wrong, is he sick, is the valve not working, have I missed the warning signs again? All sorts of irrational thoughts came flooding into my mind. Visions of his little sick body covered in cords, with machines beeping filled my head. Of course that isn't what's happening. He's out of shape, he has no energy reserve, he's still recovering from a major surgery, I know all the facts. However, this is what I call heart mom PTSD. The thing about being heart mom, at least in our situation, is that you're never really get to be "post" trauma. So maybe I should call it heart mom traumatic stress disorder. Yes I am post the trauma of being in the hospital THIS TIME. However, at least for us, there will ALWAYS be a next time. There will always be another valve replacement in our future. So as much as we are post trauma currently, there is a part of me that is always going to be pre-trauma, which makes ignoring the irrational thoughts that flood into my head much harder. I always have to be looking for the signs that something is wrong, that something has changed, that he's getting worse again, and pray to God I pick up on them sooner next time.

So yesterday I cried. I cried a lot. I cried at the memory of what he has been through, now that we're safely outside of that fire I could look back and really let the gravity of what he's been through sink in. I cried because I felt bad that my being traumatized and stressed out in turn made him stressed out yesterday. I cried because I'm so tired of him having to be tired. It's not fair, it's hard, it doesn't make sense to him, and I hate it for him. I cried out of sheer gratitude and amazement at the multiple miracles that have taken place to allow him to still be here. I cried at out of gratitude for each hug, each argument, each day that we've been given with him. I never for a second take it for granted, because it has not always been promised. But I also cried because Zane has effectively lost the privilege to just be tired. I asked Zach, "when do you think we'll be able to hear him say he's tired and not feel like we're going to throw up?" The answer to that I'm pretty sure is never. So I cried at the truly painful and heart breaking realization that there is no going back to that blissful ignorance we lived in for the past six years. To quote Rowan, we live here now, in this new, very difficult normal.

Settling Into School Routines

The first full week of school as been a long one. All of us are adjusting to our new schedules and what our days are going to look like. Zach was out of town Tuesday and Wednesday which made the first week adjustment that much more difficult. I am trying to figure out getting all the things ready for two kids in the morning and getting them both off to the bus as gracefully as possible. It's a learning curve and we are all adjusting. The key I think for me is to do everything the night before when after the kids go to sleep. In the morning there are just so many boys on my body I can't even think straight.








Rowan is doing surprisingly well with what is arguably the biggest change in the family, starting kindergarten. I had braced myself for rage filled fits, fueled by exhaustion, but I forget that isn't really how Rowan rolls (that is exactly how Zane rolls if you're wondering). Rowan generally just falls into a puddle of emotion when he's tired. He has done this a little bit, mainly over reacting to small injuries, which is normal. No major meltdowns, just a tired boy, but overall he is extremely excited about kindergarten. Friday Thatcher and I went to have lunch with him for the first time. I struggle saying no to his puppy dog eyes. Rowan seemed extremely confident and walked back to the lunchroom before lunchtime was over, to be with his classmates. He seemed quite sure of himself. I'm trying to be proud of his confidence and not sad that he doesn't miss me more. He did, however, admit that he felt like crying once he got to the lunchroom because he wanted another hug, but he didn't because he is five years old. Great!



I wish I could report on what exactly he's been doing at school, but this is very hard to parse out from the large number of huge lies Rowan tells. This was not something Zane did. Zane has an iron clad memory and generally is quite the first child in his rule following/message relaying from school. I'm not sure Rowan knows the difference between what actually happened and what he wished would have happened. For instance on day four of kindergarten he swore on his life they learned the number twenty. I just don't think that is true. On the first day of school he swore two kids in his class (who have the same name) punched each other in the face and were sent to the office. There are two kids with said name, but did they punch each other on the first day of school? Hard to say. There also is another Rowan  in his class, spelled Rohan, which he seems excited about, meanwhile my trying to give my kids unique names has officially failed miserably. Doubtful of two Thatchers, but we shall see.






Second grade has seemed to be an easy adjustment so far for Zane. Things get crazy busy and hard quickly in second grade, but so far no major changes except he does have one page of math homework daily, taking all of five minutes to do, and is usually done on the bus. Reading and testing hasn't started in earnest yet, but he was happy to get his AR score with his top end being 4th grade reading level. He has started reading more and his classroom has some books in it that he's really enjoyed. His lunch isn't until 11:50am which is much later than last year and later than we usually ate lunch during the summer. He does get two snacks and a water bottle in his classroom so he isn't starving. His special classes (art, music, PE, ect. ) are not until the very end of the day which makes for a very long day in his classroom. I'm amazed by his ability to focus and enjoy school/school work.



I'm pleasantly surprised with how good Zane's overall emotional status is these days. He's excited about Cub Scout, their first meeting was Friday night and they got their popcorn papers so we are officially in the popcorn business times two kids now. That meeting was Rowan's first meeting as an official Lion and he was thrilled to have his daddy be his den leader. Zane is back to regular baseball practices, which he is loving, though he is quite out of shape from his past six months of not doing anything. I let him ride his bike last weekend which he was thrilled about, it was a week before his official three month post op date, but who is counting. Zane's biggest issue as of late is his frustration with Rowan's previously mentioned pathological lying. He's flabbergasted at Rowan's ability to lie with a straight face, aren't we all. We're working on it.



While the big boys are doing amazingly well with their transitions Thatcher maybe not so much. The


Turns out the biggest adjustment of all might be for me. I have gone from a house full of crazy, rowdy boys, to quite, long days with a one a year old who thinks he is two. Our first few days at home were full of fun playing, swinging, and a long naps. This past week he decided he need to throw fits about everything under the moon, from not being able to go outside, to not being able to play with knives, and everything in between. Thatcher has a hard time saying good bye to brothers in the morning and spends a solid thirty minutes or so crying once they leave. He toddles around the house looking for them all day and this is all made worse by the big boys evening activities which mean some evenings it's just me and Thatcher at home as well.

He is big enough to get on the bus, can't you tell.

Waving bye bye to brothers.



Thatcher has found a new love for books, or should I say a new love of the dog book, so we spend a lot of time reading that. We play with his barn, we spend HOURS swinging, he's learned to climb up into the pirate ship and slide down the big slide as well. We had a day where baby Alice came and played with us all day, which went much better than I expected. They actually played well with each other and I got extra toddler snuggles. Friday evening Thatcher did spike a temp, with no other notable symptoms, so either he has gotten his first cold from going back to daycare or he might have some more teeth coming in. I do love our time together, when he's not throwing huge toddler fits. I have learned I do better with some background music though, the utter silence is a little eerie to me after years of a such a loud house. 







Fitting in all the Fun: Summer 2018

Well our summer was a weird one, of waiting, and healing. This meant that we had to fit all the normal summer activities and outings into the last three weeks. First up was swim lessons for the big boys. Zane knows how to swim, but this meant he got to practice his strokes and swim everyday for two weeks. They both did wonderfully!

 This also meant that Thatcher and I got to look at birds and eat snacks together, every morning, for two weeks. Look at this sweet face!

 We hit up the new indoor climbing place in Edmond. Crazy, but fun.

 We spent a day at Grandma's house. I went into Enid to buy Christmas decorations from the mother of one of Able's friends. Then in the evening we rode all the rides at Meadow Lake.

There was summer family movie night in the neighborhood. It was happening at a friend of ours house and everyone had a great time, including a late night walk home through the neighborhood!

 We celebrated MJ's ninth birthday. I can't believe she is nine. She is growing up to be such a sweet, wonderful young woman. That means that we celebrated our twelve year anniversary as well.

 While we were working on getting Rowan ready for school, and preparing for him to not take naps at school, we would have afternoon cuddle time. There was even a day that big, five year old, Rowan fell asleep on my shoulder. Be still my beating heart.

 Rowan's end of the summer activity request was Bounce and Craze. This is my least favorite activity because they only stay entertained for like twenty minutes, but Rowan loved it!

 Our last outing was to the science museum. We haven't been in a really long time. Thatcher loved everything and the big boys feel like they might be too old for it, spoiler alert, they are not!

 Then there was one last hamburger lunch before we met the teachers and the craziness of back to school began.

These three weeks were unbelievably exhausting. Everyone was tired, everyone was crabby, everyone was nervous about school starting. We powered through it and hopefully made some memories in the process. There is no getting around how difficult of a summer it was, but my hope was that at the end of it Zane can say that he got to lots of fun things before school started as well. Thatcher was a great sport, being dragged around to all sorts of things, missing naps, staying up late. God Bless the magic that is the third child. Now it's just Thatcher and I here all day, swinging, sleeping, missing big brothers. 

Back to School 2018

We have spent the past two weeks cramming in all the summer fun we could, but yesterday it was finally time to meet the boys teachers. Rowan has been enthusiastically counting down the days for until school starts for months now. Zane was much less excited about heading back, but did finally get excited about finding out who his teacher would be.

Here we are waiting to get inside. Lots of Zane's friends came and gave him hugs, checking in on how he is doing. The principle was at the door and was very excited to him. The last time he was in this school he was tired and afraid. We left the last day of school with lots of hugs, well wishes, and prayers for our difficult journey ahead. It was amazing to return with my once again healthy and happy kiddo, this time getting excited hugs from all his favorite people. Being able to tell everyone he is better than new was truly a joy. It is a blessing I know lot of heart families don't get the opportunity to have and made the day doubly emotional for me. 

 As we started into the school I could feel little Rowan going from super excited to ever so slightly anxious. Having had a kid in kindergarten before there were a few nerves on my part as there were a few kindergarten teachers I was hoping he would get. In amazing news Rowan got Mrs. Dooley as his teacher. She was the teacher in the classroom next to Zane's kindergarten class so I know her, of course Zane knows her, and Rowan recognized her as well. She was also teacher of the year last year for Deer Creek so I am confident she is in wonderful hands. Once we made it to her classroom Rowan become pretty shy, but did well introducing himself to his teacher and helped unpack all his supplies. He was excited to see that one of his teammates from baseball is in his class so he already knows a friend. I would find out later in the day that a friend of mines daughter, who Rowan has met and played with before, is also in his class so he started with two friends.

 Then on to Zane's class. This is our first go around with second grade which means I try hard to have no preconceptions about any teachers. I don't ask any of my parent friends who they had or who they like, I just trust the system and it has worked wonderfully so far. Zane's teacher's name is Mrs. Moore. When we got to her classroom she started introducing herself to Rowan, I said, "yes this is Rowan, he is Zane's brother, Zane is going to be in your class." She was frankly a little surprised and said, "Oh wow I thought he was in fourth grade." To be fair Zane is almost as tall as she is and a giant so it's usually pretty shocking. Mrs. Moore seemed very nice, not over the top perky, but very friendly and kind. Zane was excited he gets his own desk to put his supplies in this year and as he was unpacking everything I started looking at the names on the desk next to him, trying to find names I remember. Imagine my surprise when the next right next to him was none other than the his arch nemesis from kindergarten, who shall remain nameless. Loyal readers of the blog remember this constant kindergarten drama. I DIED laughing, Zane's quote when he saw it was priceless, "all hope is lost." We have since discussed how much he has grown and how he isn't the same kid he was in kindergarten so we are sure Miss O isn't either. Side note, this little girl was one of the last people he saw on the last day of school last year. She gave him a huge hug and wished him good luck. She is actually very sweet I'm sure it will be fine.

Then off we went, Zane had a few more teachers to find to give hugs to. Mrs. Laurick is right across for Rowan's classroom so he went to say hi to her and he found all his very special, specials teachers to give hugs to and update everyone on his amazing health and recovery. I think I was more teary eyed watching how happy Zane was to tell everyone how well he was doing, and witnessing the amazing love that surrounds him at school, than the idea of Rowan starting school. That came later in the day as Rowan became more cuddling and emotional. Lots of emotions, lots of changes, all good though so I can handle that.

The theme this year is The Greatest School on Earth, a take on The Greatest Showman the movie. So after toddler lunch with Abbey's crew we brought MJ home with us to watch it. I was surprised by how much I loved it. I love the inspirational quotes from the movie that line the halls of their school. My personal favorite being this one, which Zane refused to pose with, but sums up his little life perfectly.

Rowan and I got lots of cuddles in yesterday as his emotions went from ecstatic to start school to scared, to sad because "I'm just don't want you to be alone Mamma." Rowan and I have had lots of wonderful time together over the past two years. When Zane was in Kindergarten he had nine solid months of just him and I. That was precious time. He took care of me when I was pregnant with T. We cuddled and napped together. We went on very low key, calm, adventures, which he was perfectly happy with. Once Thatcher was born he thrived in his roll as big brother. This past year he was my constant helper and an amazing big brother to Thatcher. They played together and keep each other wonderfully entertained. This summer Rowan took on the big brother role to both brothers. He was checking in on everyone, cuddling me when I needed it, playing with Thatcher when he needed to be entertained, and diligently waiting for the day he could play with Zane again. Everyone had their own struggles over the past six months, and due to this Rowan sadly missed out on a lot of the pre-kindergarten celebrations with everything else going on. I did the best I could these past few weeks, taking him to lots of fun places, and he was such a great sport through everything. I am desperately going to miss him and his wonderful cuddles now that he is in school.

This morning the boys were up bright and early at 6:15am. We had eaten our costmary biscuits and gravy breakfast and were dressed by seven thirty. That would be amazing on a normal day, but school starts later on Wednesday in our school district which meant we had an hour and a half to kill before we could leave for school. Rowan went through his whole range of emotions during this hour. He was mad, he was sad, he was over it, he was bored, he was excited. If it hadn't been so sad it would have been really hysterical. Finally it was time for pictures and to load up to go to school.

There were a few tears from both of us this morning. As I hugged my tiny little boy I let him cry for a minute then I said, "Rowan what can we do?" His response "hard things!" He excitedly remembered this, as though he had briefly forgotten this over the past few weeks when our quota of hard things we had to do has plummeted, praise God. We agreed we could cry and hug for a minute then it was on to being brave and kind and doing hard things!

Shout out to Grammie for sending money for new shirts. She sent Rowan $20 so he bought two shirts (this being one of them) and then had enough money left over so Zane could buy one as well. Choose Kind! Thanks Grammie they both looked very handsome today. Rowan's spikey front hair is a new style he came up with one his own yesterday and then came out looking like this again today. He looks 100% five years old and ready for kindergarten.

 I am amazed I got a shot with all three of them outside. I didn't set out to even try to get all of them in a picture, Thatcher just really wanted to be part of the fun.

 So glad they will have a few years at the same school.

 The first day of school is crazy town and I have learned over the past two years your best bet is to just show up super early and sit in the parking lot for a while to avoid parking in a muddy ditch. That's what we did this morning and it worked out lovely. We had plenty of time for hugs and pictures while we waited in line.

 While waiting to go inside I told Rowan "remember you're on bus number 20 at the end of the day." Zane proceeded to freak out and quickly correct me that they are actually on bus eight. That was a near crisis since I had put bus 20 (our old bus from our other house in this neighborhood) on all Rowan's paperwork.

 Rowan walked boldly towards his room once we got inside. One of the things he was scared of last night was not being able to find his room again. So I told him once he got to the library go the direction of the hand he writes with, he kept telling himself that all morning, and found his classroom perfectly by himself. Usually on the first day of school the kids go to the playground and you aren't able to go into their classrooms. I remember this being a little sad on Zane's first day of kindergarten. So I was happy to here that due to all the rain (thanks dad) we were going to be able to walk them to their classes to say good bye.

 I walked in with Rowan, corrected his bus number, then gave him big hugs. We had had our tears earlier in the morning and yesterday (remember my pre crying method) so this was pure excitement. Zane was waiting outside the room with T, but he asked if he could go give Rowan hugs. Zane I think is just a little sad that he won't be spending his days with Rowan anymore. After a brother hug Rowan waved good bye to us and then we were off to Zane's room. Just like that he's in school. I made a concerted effort to not think about how many years of school lie before him and just focus on the excitement of kindergarten. One day at a time is the best motto for me.

 It was also really nice to have Zane there to give me hugs and hold my hand as I left Rowan in his classroom. Zane is the most loving kid, I just adore him. Zane gave me a big hug before walking into his class. I didn't go in with him, I know he is much too big for that. Zane has grown so much, not just physically, but emotionally as well these past few months. I think we've turned the corner and officially have our happy boy back. I hope that doesn't change now that he is going back to school. At the end of school he was less than happy to say the least. I just pray he has a wonderful, calm, fun, amazing year this year. No big surprises please universe!

 And then there was one, I walked out of school with Thatcher feeling lighter and with the distinct feeling that I was forgetting something, like pieces of me were missing. I know there are a lot of people who can't wait for school to start again. They are ready for their kids to be out of their hair, to have some piece and quiet after the craziness of summer. I have to admit I had moments were I felt this over the past six weeks or so, but for the most part I hate to see them go. I feel lonely and sad without my boys. For all their craziness and loudness they truly are my favorite people to be with and they fill my days with so much joy. As we drove out of the parking lot Thatcher let out the saddest little "bye" as he waved at the school. Break my heart to pieces!

Thatcher and I had a good day. We went to get a few things after drop off and Thatcher chatted up everyone at the store. I think he will start talking much better now that I have all day to dedicate to repeating words to him, I said water a hundred times today at least. Then we headed home for lunch and naps. I took a glorious nap, organized some cabinets, and eventually realized I was going to need to play music or something because I can't handle the dead silence in the house without the big boys.

Thatcher and I had lots of fun, but we were ready for Zane and Rowan to get home. 

Rowan apparently almost missed the bus from school, not sure why, but he made it home and proclaimed "it was the best day ever!" So I take that as a success. Both kids reported what they had done that was kind, including talking to/playing with the new kids in their class and helping people who fell down. They were starving and thirsty, over all thrilled about the day they had had. 

I could tell Rowan was tired and he did end his night in a teary mess about missing me, so we shall see how tomorrow goes. It's a tough change for everyone involved. The first day is lots of fun, but reality will set in when he realizes he has to go everyday. Zane also ended his night in a teary mess about missing his best friend who went to a different school. There is no easy way to deal with that, it just plain stinks and I hate it for him. He is great at making friends, but he and this particular friend were two of a kind, not everyone you meet is that kind of buddy. 

So we begin again tomorrow, wish us luck. Prayers for a safe, happy, fun year at school for my sweet boys. I am so proud of them for being such awesome kids.