Lessons Learned from Walking Through Life's Fires

Going through trauma in life feels a lot like walking through fire. Usually these traumas come at you unexpectedly. Our trauma started in February and even though we knew Zane would need another surgery this particular news came completely out of the blue. Our lives felt like they went from a calm beautiful day to a four alarm fire over night. We were thrown into disaster mode and we watched as our normal, happy, care free lives began to crumble around us. It's was a searing, constant, intense pain that never went away. We felt like we couldn't keep going, but we did. We held on for dear life and clung to the family and friends who jumped into the fire with us to help us out.








 That's the thing about fires, everything and everyone around you is affect and feels the heat. People will jump into fire to try to rescue their loved ones. That is true when a difficult situation is thrust upon you as well. It's not localized to just the one child involved or just to the parents of that child. It affects everyone in those people's lives. I witnessed this first hand and tried to keep it contained. My family and friends all have full plates of their owns, I didn't want them to have to add more to that because of our crisis. It doesn't matter if you're in the middle of your very own fire you will jump into other fires to help a friend. There is no greater example of this than with my friend Jessica. She was walking through her life's biggest trauma, losing her son, while I was face Zane's upcoming heart surgery. She was going through something million times worse than anything in our life, but showed up for me and I showed up for her as well. At one point I was at her house apologizing for complaining about my stupid problems when hers were so much greater. Her response was something to the effect of 'It doesn't matter who is comforting who, we just show up for each other.' That was true for all the people in my life. They jumped from fire to fire helping where they could. My family and friends all rearranged their families lives to show up for us until we made safely to the other side.






A hard lesson to learn, that I think I really learned after dad died, was let people help me. Ask for help, accept whatever people have to offer, and most importantly tell people exactly what you need, unapologetically. People who love you are willing to do any and everything to help you. However, they don't know what you need until you say it. If you find yourself blessed enough to be are standing outside of a fire, watching a friend or family member suffer, and they aren't telling you what they need, just do something. I've said it before, show up!!! Say something, call them, show up with food, do their dishes, hang the pictures they want hung but can't do (my service to people is my ability to hang things in straight lines), do their laundry, do something, anything, believe me it will help.







During that same conversation with Jess we were talking about how people say things like "I can't imagine going through that," or "I could NEVER do that." First of all don't say that people going through a traumatic event. Turns out that is not comforting what so ever. Secondly, and more importantly, you can and would do all of the terrible things you could never imagine if you had to for your child. You have no other choice as a parent. You literally could walk through fire for your children if that's what they  needed you to do. That is one of my biggest take a ways from my heart mom journey. I can confidently say that I can and would do anything for my children. Doing the unimaginable became sort of norm over the last few months. Every time something seemed impossible I could tell myself you've walked through this fire before and survived.We can do hard things. Through this trail by fire you are rewarded with an unbelievable confidence in yourself to be able to get through anything life might try to throw your way.




When you're in the middle of a crisis none of this matters. Time stands still and there are days you want to fall to the floor and just give up. Don't get me wrong, there are days that you will give up. The next day you get up again and remind yourself you can do anything and power on. There are many nights that I went to sleep with no idea how I would get through the next day, but I always did. You just do it, you shake your head in disbelief that this is your life, and you just keep going. You take breaks, you accept help, you cry your eyes out, then you keep going. Sometimes you're crawling through the fire, but you can't stop moving or you won't make it. Warrior on!



Once you make it safely out of the flames the intense pain is gone, but a different pain lingers. The wounds you've received from your journey take time to heal. When you think you've survived it a new scar forms and a different type of pain arises. At some point the wounds will heal and you're left with new scars. I'm proud of my scars. I've earned a lot scars in my life, most of them you can't see, but all them are a part of my story. All of them have made me who I am today. The wounds have changed my story, sometimes for the better, with a deeper gratitude for the wonder life I have. Sometimes with a greater sense of empathy for those whose walk through fires that lasts a life time. However they effect you everyone who has been through a traumatic, life changing even, has had their story changed. This includes my kids who were there for this journey. Obviously Zane's story is different now, his life's road took a big turn, but my other kids stories are changed as well. Hopefully we helped them through everything and these experiences make them stronger, more empathetic, more grateful, but that isn't a guarantee.

I saw a quote recently that I think sums all this up nicely. My goal in life is to raise beautiful people, not necessarily children who have never been through struggles or hardship. I'm trying to raise children who can face anything life throws at them and know they are brave enough and strong enough to walk through the fires of life.



The most beautiful people we have known are those who have known defeat,

known suffering, known struggle, known loss, and have found their way out of the depths.

These persons have an appreciation, a sensitivity, and an understanding of life that fills them

with compassion, gentleness, and a deep loving concern.

Beautiful people do not just happen.

Elisabeth Kubler-Ross

Zane's 8th Birthday Week: Birthday Interview

Ok I know that Zane's birthday week posts are not really on his birthday week and there are lots of surgery posts mixed in, but so be it! I did ask these questions on his 8th bday.

1.How old will you be on your birthday? Eight
2.Who is your best friend? Asher (sad news Asher is going to a private school next year)
3.What is your favorite thing to do? Play baseball
4.What is your favorite color? Blue*
5.What is your favorite food? Mexican
6. What do you like to do with your family? Watch a movie and be with them*
7.What is your favorite toy: Mooly*
8.What do you want to be when you grow up? snake catcher*
9. What makes you happy? Penguins
10.What makes you sad? Missing Scout
11.What is your favorite moviem Toy Story
12.What is your favorite book? Diary of a Wimpy Kid 1
13.Where is your favorite place to go? St. Louis Zoo to see the Penguins*
14.What do you like to do outside? Playing baseball*
15.What is your favorite animal? Penguins or snakes*
16.If you could go to dinner with anyone in the world who would it be? Albert Pujols*
17.What is your favorite snack? KitKat
18. What do you want for your birthday? Dog
19.Who is favorite Super Hero? Batman
20.What is your favorite song? The Fighter by Gym Class Heros 
It's a long story, but this became Zane's theme song during this heart journey. We listened to it on the way to all kinds of doctors appointments and was his motivation to keep fighting.

Tales of a TET Baby: Recovering at Home

Getting home from the hospital was a huge hurdle in Zane's recovery. The hospital stay was by far the hardest part, but I don't think we had accurately prepared ourselves for coming home. I say that in the best way imaginable. We had prepared to bring home a kid with a sternal incision who wanted to sit on the couch and do nothing for six weeks. That was going to be challenging but we had either purchased or received tons of calm activities, coloring books, sketch pads, arts and craft supplies, Legos, and all sorts of fun things he could easily do while sitting on the couch. We were prepared for a lazy six weeks with a kiddo who still didn't feel very well.

In great news Zane's energy came back much quicker than we had expected. Zane had been very tired and had had no energy for a few months now. We had gotten slightly use to the calmer, all be it much less happy, Zane. Now that we are three weeks post op Zane has all of his energy back but sadly can't do any of the things he wants to do. Sternal precautions are no joke. We are supposed to keep him from pushing, pulling, climbing, putting arms above their head, lifting anything, falling down, doing any activities where he might have to do anything with his upper body or where he may fall down. In short sternal precautions mean he can't do any of the things he wants to do. I was hoping the love of reading he had fostered when he was more tired would stick around, sadly I do not think it has. This means we are now having arguments about having to read and do other things besides watch TV and play video games. Don't get me wrong he does that a fair amount of the time as well, but we have loads of things to do that don't involve a screen but we are back to that age old fight at my house.

The first day home Zane's first grade teachers, Mrs. Blue, came by and brought him cards that all of the first graders had made for them before school was out. Some of them said the sweetest, kindest, little messages of love and support to Zane. I love how kid's minds work. I've said it before, Mrs. Blue was on the frontlines of this heart warrior's fight. She spent the most time with Zane while he was dealing with the exhaustion and all the different emotions that came with it. I think Zane has a special place in her heart and we so greatly appreciate her. She came by yesterday and hung out for a little bit and watched a movie with Zane. She was going to take him to get ice cream, but he was pretty beat after his first trip to the Y-cade at the gym

For the first two weeks we had someone bringing us dinner every night. This was a God send. Not that I was super busy, but I was very much sleep deprived and just couldn't even contemplate cooking dinner and couldn't take everyone to the grocery store to get food.  Zane slept with me for the first two weeks because in his sleep he would try to take off his steri-strips, mess with his incision/chest tube sites, try to lay on his stomach, and try to hop right out of bed by himself. All things he shouldn't be doing and that could be potentially detrimental to the healing process. So I didn't sleep very much even when we got home. Not having to worry about food was wonderful blessing. We had lots of left overs for lunches and a visitor every evening did motivate me to try to keep our house somewhat clean. His visitors/dinner angels included his music teacher, his art teacher, a sweet little girl from his class, a kindergarten friend, his kindergarten teacher, a few wonderful families from his baseball team, Abbey's in-laws, a total strange (who brought us food out of the kindness of their hearts), and a few of my friends as well. A huge thank you to everyone who brought us food, stopped by to say hi, brought presents, or donated money to us through our meal train. I was off work for a little over two weeks which means that's a full paycheck we will missing. So every little bit truly helped us get through this difficult time.

 

Rowan helped Zane work on his lung capacity those first few days. We did this during the night as well, along with needing pain medication. Fun side note Zane on narcotics is absolutely hysterical. He is definitely a happy, I love everything, chatty little drunk. This was quite the amusing surprise those first few, very sleep deprived, days.

 Keeping Thatcher off of Zane has been one of the hardest things since we have been home. Thatcher's favorite pastime is jumping on his brothers to "get them." My goal was to keep Zane from laying on the ground, which didn't always work and did end in Zane getting jumped on once that first week. Thatcher also tries to climb on the couch and up on to Zane's lap. They are both ready to be able to play rough together again soon.

 Some days Zane feels like he is totally fine and has all the energy in the world, but then when we actually go do something he still gets tired pretty quickly. I think this is due to the fact that even though his valve is functioning perfectly, which helps him feel like he has more energy, his heart as a whole remains enlarged from it working so hard over the past few months. I am told his heart should decrease in size and should end up the appropriate size for his age and this activity intolerance should get better with time. So there are a lot of sad afternoons with an exhausted boy who thinks he is too big for naps, but desperately needs one.

 The first weekend after we were home this random dog came into our backyard. Right before surgery our neighbor started replacing the fence between our yards. We weren't of much help, but Zach was going to build a new gate when we got home. This meant our yard was open to lost dogs for a while. When this dog showed up Zane sat calmly with her outside for an hour until her owner finally came and found her. He brought he food and water and generally had a great time. Hence where the idea to get Zane a dog came from. He is eight, he has begged for a dog for a long time, and after watching this interaction it seemed like a great idea. We had all summer to sit and work with it, love on it, and train it before school started back. What could go wrong??

Well it's my life so you know something went wrong. After a week of puppy research we decided to get a little beagle. It wouldn't grow up to be huge, we could get a puppy, it was going to be Zane's birthday present, and we all had high hopes that this would be a new wonderful family member. We got the dog on the Friday before Zane's birthday (June 19th). I then worked all weekend and wasn't around the dog much. I did feel that my eyes were super puffy and itchy Saturday morning. Fast forward to Monday morning (the day before Zane's bday) at 9 am. I had been around the dog for two hours and it had become abundantly clear that I was terribly allergic to it. 

 Thatcher and Scout were the cutest thing in the world. He learned how to say puppy and good girl. He petted her and loved to have Scout chase after him around the yard.

All of this ended with Zach and I having to tell Zane, on the morning of his 8th birthday, that we had to take the puppy back to be with her Momma. Sweet Scout was a great puppy. She never got adjusted to living out our house and I don't think she felt great being in a new place yet. This meant a lot of potty accidents, a seventy five dollar vet bill, and a couple very sad boys when we had to take her away. It was awful, there is no way around that. I hate it so much, the boys loved her, and they would have been great dog trainers. It also means that we probably will never have a dog because this was such a huge debacle and I'm allergic to everything! However, later in the day on his birthday Zane's eyes were bright red and itchy as well, so he is most likely also allergic. The whole thing was a very expensive, very sad, epic parenting failure that has made our time at home a lot harder than it probably needed to be.

 .

In more exciting recovery news Zane went to his two week post op appointment on June 14th and everything checked out great. He had another xray, EKG, and echo done, which all looked good. The doctor's reinforced the importance of the sternal precautions and told us he would be cleared to swim at six weeks. Bicycle riding, tree climbing, swinging a baseball bat, or any other activities where he could potentially fall down we still have to wait a full three months before doing. So there is an end in sight and he will be able to at least swim in swimming pools some this summer, but still no lake.



 His stripe is healing up nicely and the chest tube sites are not far behind. He has a whole new set of scars to tell his story. He was showing a neighbor his "stripes" and "dots" and the neighbor's mom said, "wow son your chest is just boring, look at the amazing story Zane's chest tells." This is very true. However, I have noticed Zane is much less excited to talk to people about this surgery experience and his scars now. He has told me numerous time he doesn't want to talk about being in the hospital or his surgery so I'm hoping he will still be proud of his stripe and proud of himself for making it through this difficult journey.

 That's the big news, we are trucking along, trying to stay sane and safe. We go on small little outing each day, but we still don't have energy for a lot. This was the boys before lunch on Zane's birthday. Everyone is dressed in Cardinals apparel from head to toe these days which I'm totally fine with.

 Thatcher has gotten better about sitting with Zane while he plays video games, watches tv, or reads things.

 Zane did manage to read a book for his book club with my cousins son in Pennsylvania. He wanted to work on typing so he typed him an email after he finished the book. We haven't heard back from Q so hopefully they haven't forgot us.

 There has been lots of board games, card games, puzzles, and Legos even if Zane isn't always excited about doing those things.

Boy fun abounds at our house.



We are trying to remind Zane that angry Zane, from before surgery, was left at the hospital and happy Zane is now back. He is back to being a normal kid, which sometimes means doing things you don't want to do. Good news though, you're a normal kid again, normal kids just have to put their clothes away and do what their parent's tell them. I think we still have a pretty big adjustment period ahead of us to get him back into his normal routine of being helpful, happy, and part of real life, not just doing exactly what he wants to do all day. 

A difficult part of being a heart mom that no one talks about is in these transitions. There are months were you are so scared you might lose your baby that it's almost impossible to keep them well behaved because all you want to do is hold them so tight all day. Then they make it through all the horribleness and hard stuff and you are just sooooo excited that they lived and you are home that all you want to do is hug them and hold them all day. It's a miracle my baby is alive can't we just cuddle all day? Nope through all of that craziness and emotional hell you have to be a parent.That's almost harder than all the rest of it. There is no time to bask in the glow of making to the other side of the horror because you have to go right back to making sure that when all is said and done your heart warrior grows up to be a good human. That's where we are now, transition, working on being a good human, and trying to keep Zane from falling down, sword fighting, and climbing on stuff. All things he usually dose all the time. Three more weeks!!!!! Wish us luck!



Tales of a TET Baby: Post Op Day 4 and 5

Post op day 4:


I had gone home to sleep on the night of the third since Zane was doing much better and had been moved out of the PICU. This meant I missed the morning lab draw. This was the first one where they had to actually stick him since his central line had been removed the previous afternoon. For some reason Zane is apparently a difficult stick and it once again took four tries to get his morning labs. I was back at the hospital by six thirty in time for change of shift and all the doctor's rounds.


Zane was feeling better but still had no appetite and threw up his morning meds to start day four. Of all the possible post op complications and hurdles I thought we might face I never thought getting Zane to eat was going to be our hold up. I should have, of course, because everything makes him throw up, including crushed meds, liquid meds, meds in food, no meds, IV meds, all the things. So I quickly became the mother that all nurses hate. The mother who asks the nurses to change their kids medication from liquid to pill and back again. We finally found a combination that worked, thanks to our wonderful nurse, which was liquid Tylenol and a Lasix pill. Turns out Lasix pills are tiny, they really should have told me that earlier in our stay.


Day four also brought the arrival of some of his favorite teachers from school. All his "specials" teachers (PE, music, guidance, art, and library from left to right) came to visit. Zane was overjoyed. He loves all his teachers, but I think the fact that he has these women every year, while his home room changes, helps forge that special bond with him. Mrs. Austin, his art teacher, is one of his all time favorite people in the world so he was especially thrilled to have her come visit. She is from Missouri so he was excited to show her all his cardinal stuff.

 

 The other big event of day four turned out to be one of the most amazing, special, emotional moments of my life and I never even saw it coming. I knew he would have a post op echo and had given that no thought. Since Zane was born I have sat through or held Zane down for probably twenty five echos. It was a big milestone in Zane's life when he started being able to sit still for them and an even bigger milestone when he started to enjoy "the magic wound" as we have always call them. Zane was excited to go and take his owl Echo, who is the Pediatric Congenital Heart Association's mascot, with him. Echo has been with us for all of our heart journey this year. He came to the ER with Zane and since then has been by Zane's side for all his big events and was in bed with him through all of his recovery.

 As you can see Echo was excited to come to Zane's echo.

 The tech started the exam and I started checking email and looking at my phone, because like I've said I have sat through a lot of these and usually they tend to be a pretty depressing thing. The screen fills up with red, blue, and green as my son's broken heart pumps away. The green is from oxygenated and deoxygenated blood mixing together. In a fully functional heart that doesn't happen. In a fully functional heart it should be a beautiful heart with half blue (deoxygenated) and half red (oxygenated blood). So imagine my surprise when I looked up and saw my sweet heart warrior's echo, full of red and blue only. Two beautiful chambers, beating away, each with the correct color on the screen. No green in sight.


Remember how I said I had pre-cried for this event. I had my game face on, ready for battle, going to war. Well this was the point that I lost my game face and broke down into tears, thankfully tears of joy. Some of my earliest memories of Zane are his tiny little body being held down for this exact test. It took forever to do an echo back then, so for a solid hour or so we would watch his broken heart on the screen, the green a constant reminder that no matter how healthy he looked on the outside his heart was broken. The green was a reminder of the long, hard road ahead. A reminder of future surgeries, future pain, future struggles for my heart warrior. So to see a scan where all that green was gone felt like a light at the end of a very long tunnel that we have been in Zane's entire life. A glimmer of hope. A real life miracle before my eyes. A reminder that this kid has cheated death twice now, a blessing not given to all heart warriors.

 I sat there, with tears rolling down my face, in complete aw at the miracles of modern medicine that are keeping my sweet boy alive. I watched his artificial valve open and close perfectly. I could see that there was no hole between his ventricles, courtesy of that little piece of gortex they had patched his VSD with seven years ago. Somehow his little heart keeps beating after all that has been added to it and done with it. It was the most amazingly beautiful thing I've ever seen. Zane was unimpressed and responded to my tears of joy with a, "mom it's just an echo." Right, because he's had so many echos this was old hat to him, but it is anything but old hat my son, this is a miracle.

 That white line going across the middle there is his valve closed. Keep in mind that Zane, crazy full of energy Zane, has never had a fully functional heart. So technically we have never seen him with his full energy potential. A thought that is frankly kind of terrifying.

 After the pure joy of the echo it was back to reality when we returned back to his room and tried to take his liquid Lasix. He threw up everywhere, all over his incision, which prompted his first shower. This meant we also got to take some of the steri strips off and see his incision. It looks a little different than his first stripe. First of all it isn't quite centered in his chest, which my OCD self really is struggling to get use to. Secondly, they didn't use any external sutures, just sutures in the underneath, wire to keep the bone together, and then dermabond (skin glue for the outside). He got new steri-strips before his shower and we promptly switched his Lasix to a pill. You can't see it in this picture but there is a small little piece of his old stripe that you can still see and for some reason I loved that. I grew to love that stripe, it was such a big part of who he was and story. I'm glad a little piece of it remains untouched.

 Just to get a glimpse of how well taken care of I was by my friends and coworkers. This room was picked out especially for Zane on Saturday afternoon. It was blocked off by the hospital coordinator Saturday and we didn't come out of the ICU until Sunday afternoon. This room was chosen by that same coordinator because she new Zane's love of penguins and it was the biggest room on the hall. It helped that the step down unit was strangely empty (the beauty of surgery not during respiratory season) but still one of many very sweet personal touches that my coworkers did for me while we were there. Oh and our Do Hard Things banner went everywhere with us!

 On the evening of day four one of Zane's favorite teammates from his Lake Monsters team brought him the big basket that all his teammates had put together for him. It was super sweet, complete with a signed Lake Monsters baseball, a signed team photo, lots of baseball cards, a new binder for his baseball cards that they had filled up with only Cardinal players, snacks, books, all sorts of things, but the highlight for sure were his personalized baseball cards. They even have a little story on the back of them about Zane going to play in the major leagues with the Cardinals.

 His friend and their family went down to the outside area with us and to the playroom where Zane had been dying to go his whole stay.

 Zane took his medications that evening well, without throwing up. My friend Jessica had brought us up some Nerds to practicing swallowing which I think help with the pill taking. We took another trip down to The Zone (the playroom), Grandma came to say hi, and Zach came back to stay the night. He ate lots of snacks while we watched a movie and started to enjoy the amenities a little too much. For instance he started to really enjoy his side table and started to play with his bed, moving his head up and down. Yes, it's time to go then my friend.

Post op day 5:


The doctors came by early on day five and said we could go home. I told Zach there is no way to get out of the hospital before 3 pm. so he went to work and Aunt Anna came to visit. After a few games of Uno, a trip to both gift shops, and another shower, Zane was dressed and ready to go.

 All the discharge papers were ready by one, but as I predicted we didn't leave until three. Hours sitting and waiting for doctors to sign prescriptions are even more annoying when you are the parent not the nurse. Zane and I did have some time to take a quick nap together prior to leaving which I think he really needed and helped him make it through the evening of celebrations ahead.

 And we are off! Headed out to the car and ready to be home.

We were welcomed home by our family. All his Aunts and Uncles came to say hi. It became clear to me that keeping a one year old alive and keeping Zane from doing all the things he is not supposed to do was going to be a lot more difficult than I had originally thought. Zane apparently doesn't feel pain so my thought that he wouldn't do things because they hurt quickly went out the window. It was an amazing feeling to have him home safe. It was the start of all new, different stressed of keeping him safe, and letting that bone heal properly, but we can handle that. I could tell he was starting to get his energy back, but he did say to me at one point "I can't do anything fun," which was so sad to hear.

A huge thank you to my siblings and their spouses, my mom, Zach's parents, Jessica, and Anna. Through our entire hospital stay someone was there to help us figure out lunches and dinner. They sat with Zane so we could shower or go to the bathroom. They parented my little boys and loved on them when I could not. They kept my house clean, my fridge stocked, and my laundry done. Everyone was beyond amazing and supportive. I have no idea how people go through things like this when they have no family to help them. I have a new found empathy for the families that live in the hospital for months at a time. After a week I was a zombie and couldn't think straight. It took a few days to get some sleep and start to maybe feel like a human again.

I wish I could say this will be our last surgery experience. I wish I could completely put our heart journey out of my mind forever and bask in the glow of that beautiful blue and red echo. Sadly I know that this valve will not last forever. The best case scenario is that a valve lasts ten years or so. The valve they put in should get him to at least a teenager then he will need another open heart surgery to get a valve that is big enough for his adult size heart. I know one day the green will return to our echo and that ticking clock will start back up in my head. However, for now I am happy to report that the ticking clock has been silenced, at least for the moment, and I am soaking in everyday I have with my once again happy heart warrior. Thank you to everyone who sent prayers our way, donated money, brought food, and surrounded us with love. We greatly appreciate all the kindness that was shown to our family.

Zane's 8th Birthday Week: A Year in Pictures

June 2017

First Cardinals game and it did not disappoint.

Big brother duty is one of Zane's favorite things.

 

July 2017

We spent lots of time at the lake last summer, something we are missing dearly this summer.

 

 August 2017

Not a year in review without a snake picture.

 First trip to Frontier City, Zane fell in love with roller coasters.

Be still my heart.

 The beginning of our most recent heart journey started in August with Zane's first MRI. We had NO IDEA that this MRI was going to be anything other than just a check up. I couldn't have imagined all that would lie ahead in this kid's eighth year.

September 2017

October 2017

 Our heart journey came with a few perks such as a lot of one on one time with this kid going to and from doctors appointments. Lots of selfies in the car, lots of snuggles in waiting rooms, made everything a little bit more bareable.

A couple of matching pirates for Halloween

November 2017

Lunch with big brother!

 Cub Scouts was a top favorite thing this year as well. Tiger Scout!

December 2017

Top reader in his class at Christmas break meant he got a trip in the Thunder Bus to pick out a free book.

Christmas Eve snuggles

January 2018

Celebrating his math buttons with some ice cream.

 Pinewood Derby with Triper the Green Tree Viper car.

 Zane's Rock Your Scar submission this year was taken just a few days before his cardiology appointment in February when everything changed. In this picture he loves his scar, it really doesn't effect him, he's happy, and in no way scared. This would change quickly and by the end of his 8th year he would have a whole knew stripe. I could have NEVER imagined any of that when I took this picture.

February 2018

Life changed this month. This boy's story took a sharp turn Feb. 2nd. This is Zane at lunch after his cardiology appointment where they told us surgery would probably be needed soon. See that changed smile, that sad/scared look in his eyes, those didn't really start to go away until last week.

 February was the toughest month for sure, with an ER visit, uncertainty, and confusion about what was happening and if your boy was in serious, acute, danger. Zane had a lot of chest pain which also came with a lot of confusion. After his night in the ER our heart journey got much more real and much more intense.

 Do you see a theme here, white macaroni and cheese (from somewhere) after all heart related appointments, ER visit, in the hospital, and at home during recovery. It's his favorite thing!

March 2018

Started march with a halter monitor as we tried to get to the bottom of what was causing Zane's chest pain. This was the first time his heart condition had really made him different than his friends and it was pretty difficult at first. He was having a lot of pain and couldn't understand what was going on. We convinced him he looked like Iron Man and he dealt with it amazingly well.

 Dr. Seuss Day

 As crazy as this sounds this was one of the last time Zane road his bike before surgery. He tried again at Grandma's house during spring break, but he just got too tired. Bike riding was painfully missing from our spring and early summer routine this year. I cannot wait for him to be able to do this again, but it is one of the last things on this list.

 As March went on we started to really notice Zane's lack of energy. It was a shocking and very rapid decline which none of us saw coming. This picture was taken after a morning doctor's appointment on the way back to school. He fell asleep and it absolutely broke my heart into pieces.

April 2018

Easter 2018

 Zane spent a decent amount of time protesting in April due to the Oklahoma teacher's strike. He learned a lot and I think enjoyed the experience. I wish we had some better results to tell him about from the whole thing.

 End of the year Cub Scout Camp out, now as a Wolf Scout.

 We ended April with Zane's last baseball game. Watching him go from the best hitter on the team to barely being able to hold his bat was one of the hardest things I've ever had to do. It was devastating to watch him struggle and have no energy. Saying good bye to his team was very hard for this baseball boy.

May 2018

I have no idea how we made it through May 2018. Talk about your range of emotions and thinking we just might not be able to do all the hard things that were put before us. Zane was frustrated, mad, scared, and frankly a mess in the month of May, as were we all. This was the longest month ever!

 Morning doctor appointment selfie!

 Some of the hard things Zach had to do included carrying eighty pound Zane on your shoulders when he got to tired to function on a snake hunt. Being a heart Dad is not easy either.

 For some reason this face on the last day of school was heartbreaking to me. He did not feel good at all at this point, but was excited that school was over, but also knew that meant surgery was just a few days away.

 Potentially my favorite picture of the whole year. Game face on!

 Last picture before surgery

 We ended May with a new valve and a new battle on our hands. We were happy to at least be on the other side of surgery to end out the month.

June 2018

So far June has not been a walk in the park, but we are seeing improvements everyday. It is much better to be working towards a fun goal, like swimming and bike riding, instead of your goal being surgery.

 On the way home! We made it! I could not be more proud of this kid's warrior spirit.

 Being home has had it's own challenges. Having all the energy in the world isn't fun when you still can't do anything. Sternal precautions are no fun, but we are doing our best.

 Two week post op appointment, looking good, tests all looked great.

 The eight birthday wasn't the best day, but we managed to save it I think. Look at that sweet smile with all the happiness in the world back in those big blue eyes!

Next year will be better!!!!!!!!!!!!