Last Day of School 2018

I woke up this morning to the sound of thunder and rain hitting the window. Of course, today was going to be a hard day, the last day of school. Usually this is a day full of excitement. Everyone is ready for vacation, swimming, camps, and the freedom that is summer. Social media feeds fill up with pictures of smiling kiddos and reflections on how wonderful the school year had been. I knew this year would be different. This year today was the end of the road for exciting celebratory things.

For the past month it's been pretty much one fun thing after another. Zane has gotten all sorts of new things in preparation for surgery. Thanks to his very generous Aunts/Uncles/Grandparents he has gotten a new Nintendo which he adores. We have had to get new clothes that he can put on while still on sternal precautions. We have moved his room to the office so he can get in and out of bed. We've planned, and prepped, and celebrated for weeks. We did a weekend of farm fun on Mother's day, complete with a snake hunt. Then last week we swam at a friends house on Saturday and had  big family birthday dinner for me on Sunday. This week has been all the last week of school fun. There was an accelerated reader party where Zane was awarded the highest reader award with I think he said 58 AR points for the year. His teacher's previous class record was forty point in a year. There was field day, popcorn day, tug of war day, and then today of course was the last day of school craziness.

Zane told me last week that Mrs. Blue had emailed everyone's parents and the class was getting him things for him to do this summer. Last Friday a few stray things came home with him in his book bag. I thought maybe a few nice children had brought him coloring books, how sweet I thought, and we fought over writing them thank you cards over the weekend. Monday morning I get an email from his teacher, actually those things were for a basket we are putting together can you bring them back, sure. I am envisioning a little basket with a few bags of chips, some coloring books, markers, ect. A lovely idea, super sweet, so nice of his teacher to do. All week Zane had been reporting on the pile of things behind Mrs. Blue's desk that he was trying to spy on. I got an email from his teacher Wednesday saying I would probably need to pick him up because he wouldn't be able to carry the basket on the bus. Great, I'll come pick up on the last day of school, "great," she says "we're presenting it to him then." Great!

This morning we took our normal last day of school pictures inside as it was pouring rain all morning. I remembered to take a picture in his Class of 2029 t-shirt, which I was sure I would forget. Rowan got his picture taken since yesterday was his last day of pre-k. Luckily I had a busy day at work yesterday so I didn't have a lot of time to let all the emotions of that reality set in. Rowan is very excited about it though and told everyone we came in contact with today that he is done with daycare/pre-k and is going to kindergarten next year.

 

In trying to find fun button up shirts I channeled my Grandpa Dotter and got him some Mexican wedding shirts. I think he looks amazing.

 For some reason this picture kind  breaks my heart. I think it's the dark circles under his eyes that do it. He just looks so tired and if I squint at this picture just a little bit I can see baby Zane, three year old Zane, sweet happy, crazy boy Zane in there somewhere. I miss that kid, but mainly I see my very tired big, brave boy.

 It was a rainy bus stop which meant the normal crew wasn't there, but the boys had fun playing in the garage and with the Spider-Man umbrella.



All day I held back tears as we approached the end of this celebratory road. I knew that saying good bye to his friends and teachers wasn't going to be easy. I kept thinking about how during these past few month school has been his happy place. His friends have been his salvation. They have saved him day in and day out. They have kept a smile on his face, made him feel so loved, kept him feeling normal instead of sad and tired like he usually feels at home. Zane isn't the type of kid who has one best friend he does everything with, he's the type of kid who does everything with everyone. He becomes best friend with whoever he's around. I knew that coming to end was going to be hard. I knew it probably wouldn't hit him today, but I knew that in a few days losing those connects to his friends and teachers was going to be tough. Time ticked by and dreaded going to pick him up.

Finally the time came, I went in a little early because I knew he wanted to say good bye to all his specials teachers who usually are out with the bus line once school is officially out. When I walked into his class I was fully over come with emotion. It wasn't one average sized basket it was two huge, laundry baskets and two smaller baskets. One was full of snacks, one was full of fun things for him to do while he's recuperating, there was one full of gift cards, and a smaller one full of snacks and fun stuff from a different first grade class. The amount of stuff was overwhelming, but more overwhelming than that was the reaction by his class when he got ready to leave. He was swarmed, in a big group hug, by all his sweet, wonderful, kind classmates. He is going to miss them so much! A final good bye to his amazing teacher and just like that first grade was over.

This is Mrs. Blue, she has been on the front lines with  our warrior this year. She has had unending patience and has spent hours reassuring him that he will be fine. She has listened and counseled, she has kept track of when his heart was hearting, she has dried tears, she has given hugs, and was there all year, through everything when I couldn't be. There are no words to thank her enough.

 



Then he insisted that we go find the rest of his warrior crew, his specials teachers. I have a special place in my heart for specials teachers since my mother was his music teacher. Zane's  specials teachers are his biggest cheerleaders. He adores all of them and they each have helped in deal with all that is going on in their own special way. They have watched out for him and kept a smile on his face all year. I owe them a huge debt of gratitude. I know he will miss them all desperately.



Zane stopped and got a hug from the principle on his way out of the school. I am jaded on principles in general because I spent my child hearing my parents complaining about how terrible principles were. So going into grade school parenting I didn't have high hopes for the principle. Turns out she has been amazing through everything. She has checked in on us every step of the way and has been truly wonderful to Zane. I am amazed that I walked my son into this school two years ago, not knowing a soul, and today we walked out feeling like a part of this lovely community that has welcomed us with open, generous, supportive arms. So glad we decided to stay in this district when we moved, it has made this very difficult time so much better.

When we got home Zane went through all his loot as I tried to help make him understand that all these people are praying for him and supporting him. It takes a pretty special kiddo to garner that much love. Needless to say we are stocked up on coloring books, markers, crayons, and snacks for the near future. A huge thank you to this new tribe we become a part of. Thank you to everyone who has chosen to show kindness towards my son and my family. It's a great reminder that small things, done with great love, can turn into huge things that brighten and change lives. Every smile, every hug, every act of kindness can mean the world to someone else.





Tales of a TET Baby: Hospital Tour and Meeting the Surgeon

 There are a few moments in life where you just can't believe you are about to have to do what you're about to do. I feel like I have had more than my fair share of these moments in my life. Last week I had two more such experiences. Both times I just thoughts "why am I having to do this?" "No one should have to do any of this, ever." Just sick to my stomach with dread, but also fully aware that there are no other choices. We just have to do. I just have to show up, everyday, and face one terrifying thing after the next. I have to try to find words to say, try to help my family through it, and try to hold back the tears until I'm back safely in my car.

Last Monday I picked Zane up early from school so we could go have a tour of the hospital with an amazing child life specialist. The whole drive there I was wracking my brain for something to say, something to prepare him, but we just listened to music instead. My brain was in a fog, I couldn't form any logical thoughts or think of any intelligent questions we should ask. Zane was very quiet, nervous, but also excited to see where he would be staying when he's at the hospital. We took a full tour, starting at pre-op. We say the small holding room, then walked down the hall where they will wheel him away from me. They told me they would give him medications to make him sleepy before this point. The wheeling him away is the truly unimaginable moment. I walked down the hall with him and they asked if he wanted to see an operating room. I did NOT want to see an operating room, but Zane did, so we walked on and my stomach churned.

 From the OR we went up to the ICU, he got to see a what the room looked like where he would be waking up. They recover them in the ICU and potentially extubate them before we are able to come in and see him. The time from when surgery is over until we are able to go to the bedside is between one and three hours. This seems like a long, scary time. I know they have to get him settled and I don't want to be there for extubation, but still that is just more time to wait. After surgery he should speed two or three days in the ICU followed by two or three days on the 9th floor surgery unit. I'm shooting for four days after the initial surgery day.



Then we went up to the 9th floor where Zane was very excited to see that he would have his own bedside table for all the food he was going to get to eat after surgery. I say it again, glass half full all the time. Then on to the playroom where he got very excited about playing air hockey post op, which of course is one of the numerous things he cannot do post op. We ended our tour in the outdoor playground where he smelled all his different options for his anesthesia mask. We asked a few questions, reviewed sternal precautions, which include no pushing, pulling, lifting his arms above his head, wearing bags on his back, picking things up, pretty much everything for four to six weeks to give the sternum time to heal. I think the tour was good for Zane, he can envision all the place he will be, all the things he will see, for me it made it all too real. Zane left thinking he was famous at the hospital since I knew everyone we saw, correction son, I am famous at the hospital.

 Then Zane and I got to have dinner by ourselves before Rowan's T-ball game. This was lovely. He was in good spirits, though probably as subdued as I've seen him during this whole process. He had a lot of serious questions to ask and didn't really like most of my answers. When we left the restaurant we saw this pennant in the store window next door and had to get it. We do hard things everyday these days. We're getting good at it.

Thursday's hard thing was Zach and I meeting with the surgeon. I drove there thinking, "this is just the worst thing in the world." I had requested to meet him before surgery day, in order to hear all the terrible things without Zane present, and immediately regretted that decision. I did not want to hear the graphic details of what would be done to my son's heart. Everyone at the hospital as ranted and raved about how lovely, wonderful, and kind the cardiothoracic surgeon here is. "He has great bedside manner and is a phenomenal surgeon." Well turns out all cardiothoracic surgeons are robots. I think they have to be in order to not think of their patient's as adorable little kids with sweet, loving families, just hearts that need to be fixed. He gave us his speal, one I am sure he has given a million times, then he wasn't too excited about my ten questions.

It sounded so easy, simple, no big deal when he went over the procedure and recovery. There is the potential that he will recover quicker than we had expected and should be able to swim at some point this summer. They most likely will only bypass the right side of his heart so they won't have to fully stop his heart. He won't be on meds for too long, he should be home in a few days, all seems so simple when someone else talks about it. I kept myself together, asked intelligent questions, heard what they said, and understood it. I realized on my drive home I had been imagining baby Zane, in the previous CICU, with his tiny baby chest tubes, and his little body. It was all fine because little baby Zane had already been through all of that. Baby Zane was unable to speak or remember the pain. Then I thought of all the things I had heard about, but instead of envisioning baby Zane I envisioned seven year old Zane and I cried all the way home.

Last week we also had our family meeting with Zane's therapist. She said he's doing good and just having difficulty dealing with all his acute anxiety/stress. Hopefully we fix his heart and he is back to normal. Last week we did a lot of hard things, but there are so many more to go. Hard things are just that, hard. Devastating, heart breaking, soul crushingly, painful. It is exhausting to face multiple terrifying things everyday then have horrible dreams all night. I hope Zane is sleeping better than I am, he's overly tired so maybe that's helping. After those appointments last week I think we have a break for a little bit until his pre-op appointment. We're working on getting our house pulled together, working on visitation schedules, child care for the little boys, and trying to get through the last few weeks of school. Time keeps racing by!



The Rest of April

Well there were lots of fun/adorable things that were happening amidst the chaos of April so here  is a little overview. The teachers went back to school after  I think nine days off, nothing major really was accomplished so the same story continues.


The second weekend of April Rowan  had his last day of Sunday school. They celebrated the occasion with a pizza party and good byes to Ms Maggie's class. On to kindergarten next year.

Thatcher's climbing has reached a new level of crazy these past few weeks, most recently, in the past few days, he has figured out how to climb onto the kitchen table and is only happy if he is on the kitchen table or outside. Otherwise he throws tiny one year old fits, which are not cute at all.



Aunt Trina sent this late birthday present, which I think might be for outside, but he loves it so much we keep it in the living room. He goes and says wee on it for long periods of time. It's his new favorite toy.

Our sad garden is coming along, but barely. Rowan is a dedicated gardener and reminded me to plant the onions and potatoes Grandma got for us. He checks on our flowers, waters them, and has learned all the words to one of my childhood favorite songs Inch By Inch. He sings it to the garden while we are planting. I feel bad that Rowan and I haven't had any grand adventures this last year before kindergarten. I had hopes to do that this spring, but that hasn't really panned out. He's such a good sport and lights up my days.  

Sticking with Rowan news for a minute at the last minute Zach decided to let him play in a Friday night t-ball tournament. I was working so Zach took the two big boys and they didn't return until almost eleven thirty. The little Cubbies kept winning which meant they kept playing. They ended up getting third place in the tournament which means Rowan got his very first baseball medal and he could not be more excited about it. The Cubbies are surprisingly good which makes it much more fun to watch.

The other big family news is that last weekend Zach took the big boys on the spring Cub Scout Campout at Roman Nose Park. I think Zach took pictures, but I just have the pregame pics. This first one is them showing off their new hiking boots. Camping isn't cheap folks, but hopefully they can get passed down through the boys so we get our money's worth.

Rowan has taken it upon himself to fully commit to being a Lion Scout even though technically he isn't in kindergarten yet. The big boys moved up ranks so why shouldn't he get to wear his fun outfit. He did wonderful and is such a big kid in a tiny little body.

First, of what I'm sure is going to be many brother scouting pictures. How adorable are they? I love this is something they can all do together. Well maybe not all, I don't think Thatcher will ever be in the same place as Zane.

I here the campout went well. They did have to skip out on the three and a half mile hike. That is a little bit too much for this kids ticker at this exact moment, but everyone came home in one piece with lots of stories to tell and all so very very tired.

While the big boys were gone Thatcher and I had the run of the place. Turns out time goes a lot slower when you only have a one year old to hang out with. It's quieter, which usually would be a good thing, but currently is a little terrifying. I went through closets, organized closed, cleaned out rooms, anything to keep from sitting with our current reality for too long. I got a lot done and managed to avoid a full mental breakdown. Win, win!

T played on the pirate ship for the first time while his brothers were gone.

He also got to relax without fear of death, I'm sure it was a great weekend for Thatcher.

Last Sunday we celebrate Maggie J's First Communion. She looked so grown up in her fancy dress and the veil from my First Communion. I had a lovely time celebrating her big accomplishment.

Then my tired campers returned home, but were still thinking that funtivities should be happening continually. So instead of doing nothing Sunday night, beyond resting, we went fishing, ran through sprinklers, played soccer, played catch, all the things so our sweet campers ended up overly tired and emotionally Sunday night. That is pretty much my family's default state at the moment, tired and overly emotional.

This past week time has begun to speed up at an alarming rate. We turned the corner into May and I am not ok with that at all. The ticking clock is becoming deafening. I feel like there are a million things I should be doing, but couldn't tell you what any of them are. So we go to the park instead. The weather is gorgeous and T has a new found love for all things on the playground so we took a few trips there this week.

Thatcher started going down the slide with Rowan, but by our second trip Rowan had given him a little shove and he successfully went down by himself, and loved it. Yes he went down on his bottom and on his stomach, of course.

Yes he's 13 months old not two years old.

Lastly, I finally had an iris bloom. Can you believe it? I have planted them in lots of different places, but never live long enough anywhere for them to bloom. So this was a pleasant surprise before the big thunderstorms rolled in this week.



The Last Baseball Game of the Season

I have been avoiding writing this because I'm slightly embarrassed about how difficult this particular experience was for me. It's just a baseball game, he's played tons of baseball games, he will play baseball again, but it's something that he loves that is being taken away because he's sick. There are going to be a lot of things he loves that he can't do this summer, but this was the first step and it was a doosey. We talked to Zane after last weeks game, after he struggled with having no energy, and he agreed that he didn't want to play anymore this season. We agreed that he wouldn't play in the game on Monday. We would go to the game, cheer on his teammates, bring his coaches presents, and bring baseball cookies for his teammates. Then he came home from school crying that he wanted to play in the game, "Everyone else will being having fun except me." Yes, that's going to be the story for awhile isn't it.



So Zach and I caved and let him suit up. It was a terribly windy evening and the game was unbearable to watch. At the start of the season (two months ago) Zane was by far the best hitter on the game. He would get in the park homeruns every time up to bat. He hit long, hard, drives up the middle, he prided himself on being a power hitter, bringing the big bat. Fast forward to the past few games when he didn't have enough energy to swing the bat fast enough to hit anything. He also didn't have enough energy to play more than one or two innings of defense. Monday was no different, everyone on the team, even the kids who have never hit all season, where getting hits. All he wanted was one hit, but off course that didn't happen. He struck out three times and only played two innings of defense before he was too tired to play anymore.

 



At one point he came out of the dugout, with his head down, he gave me a big hug, and said, "mom, I'm just so tired." Here's where my big sunglasses came into play as I held back tears and held him for a moment. We tried to convince him to just have fun, cheer with his teammates, but it's no fun when you can't play and you're tired. So the game ended, they lost, the team lined up to give high fives and that was it. We handed out cookies and presents. Everyone gave Zane hugs, wished us all luck and we headed home.

 

About halfway home Zane said, "mom, that was a hard thing." My response was, "well, we can do hard things, and we did it." When we pulled into the driveway I burst into tears, at the thought of his slumped shoulders and tired face. At the thought of how many hard things lie ahead of us, how difficult his journey will be to get back on the field. At the idea of him missing out on his favorite thing for so long, at how unfair and gutting wrenching this whole situation. As emotional as that night was I cannot wait for how much more emotional the night will be when Zane gets his first hit post surgery. There is going to be a lot of pain between now and then. He'll have to relearn how to hit after his scars healed, but he his a fighter and we can do hard things. Warrior on!



A Day In The Life of Rowan

Next up a day in the life of my sweet middle child Rowan. Rowan's pace of life is overall slower than the other two, especially in the absence of his big brother. In good news Rowan is known to sleep later in the morning, frequently after 7am. This is huge since Zane is up and at them early everyday. Currently Rowan is an emotional basket case. For as angry as Zane is about everything and nothing currently Rowan is as sad and crying about everything and nothing. So please remember this and give out extra cuddles and hugs and be super extra patient with his little soul. He is dealing with a lot, none of which makes sense, and all of which is scary and sad to a my little peanut. But I digress. Rowan has taken to enjoying oatmeal for breakfast but his other morning staples are peanut butter sandwiches/rolly ups (tortillas with peanut in them). He will eat eggs if you make them but not a lot, Rowan doesn't eat a lot, don't worry about it he's fine. He stops eating when he's full (I know it's an amazing idea). Usually in the morning Rowan gets to watch a little something for about thirty minutes, usually while I'm getting myself and Thatcher pulled together. He knows how to work all the various tablets in our house and will find something to watch while curled up in his shark blanket. Oh yes, did I mention you will most likely be woken up in the morning by a tiny little shark, fair warning.
Rowan is currently a phenomenal helper around the house and with Thatcher. His main jobs are putting trash bags in the trash can, after we've taken it out, helping put away the kids dishes, finding all the various dishes left around the house, and changing over laundry. He will help you do anything and everything, usually with a smile, and frequently while singing a song. He loves to go outside and can be in the backyard by himself. Have him water the flowers back there, he's good at that, it's his job these days. He will pretend to hit baseball and run pretend bases for hours if you let him. He doesn't like to ride his bike or scooter without Zane. He loves doing puzzles and playing board games. He occasionally will go outside and see if the neighborhood boys are out playing basketball. If they are he's free to play with them, he does this all the time. He's super easy going, laid back, and will be happy to do anything with you or can also easily entertain himself.

Rowan will try to tell you he doesn't need a nap. He is five and he thinks that means he's a big kid who doesn't need naps anymore. DO NOT LISTEN TO THIS ARGUEMENT. Not only does he need a nap he frequently takes two to three hour naps everyday. If he comes out of his room twenty minutes after you put him in there, send him back. He needs a real life nap. Threaten to take his beloved watch if he doesn't take a nap, this usually works wonders. Feel free to leverage watching something, playing on tablets, or again his beloved watch to get him to go to sleep. My biggest concern is about the time between when he wakes up from his nap and bedtime. The moment he wakes up from his nap he will begin asking you when Zane is getting home from school, well at least that is how our days go currently. He will ask me this about every five minutes for hours until Zane walks in the door. Once Zane is home he's happy and they play the rest of the evening.


Rowan usually eats more for dinner, but still not a ton. Please don't cook a big meal for him because he will just eat a little bit for his little body. He can shower by himself, though you should remind him to actually use soap. If he comes out with dry hair, send him back. He frequently forgets the minor detail of soap in his showers. We read books before bed, teeth brushing, then stories or songs once he gets into bed.

With that being said I don't know what to expect from Rowan in the absence of his beloved big brother. A lot of his day these days is spent laying on the couch with Zane, watching tv, reading books, or just keeping him company. Visitors who are children are not allowed in the Pediatric ICU, this means Rowan won't be able to see his brother for at least a few days. I'm not sure if and when he'll get to come to the hospital to visit, so again keep his hug sack as full as you can, this won't be an easy time for him.