Ten years and counting......and hoping......

Today is a big day! It is the anniversary of the scariest day of my life. The day I learned about CHD's. The day I learned never to take anything for granted no matter how small it may seem. Ten years ago today I learned that Madelynn at three months old has a Congenital Heart Defect. I sat in the hospital with her overnight to await her life saving open heart surgery that saved her life.

I won't lie today is a hard day for me. I am thrilled and grateful that Madelynn has reached 10 years. I am in awe at the gift we have been given the overwhelming realization brings tears to my eyes. But I also know way to many CHD warriors that died between their 12th and 25th birthday. There is a part of me that carries a little guilt that my child lives and theirs did not. I wonder if Madelynn will defy so many odds and live past her 18th birthday. Why did Madelynn survive? What is it that she needs to do in this life with this gift she has been given. 

There is a tradition in our house that each child gets a video at the 5 year markers in life. So here is Madelynn's. The fact she had reached the 10 year marker is a true gift.

Happy Heart Day Madelynn!! We love you and every part of this journey, even on the hard days. The hard days are what made us who me are today. Love you to the moon and back!

~TTFN

Mama

Week 41 of 52....Make every day count.....

Ten years ago today I was in an Urgent Care being told my daughter's heart was misshaped and we needed to see a pediatric cardiologist immediately. Ten years ago today my normal life changed forever. Ten years ago today God said, "Oh by the way I have a new challenge for you" and He pushed me off of a cliff.

For 18 days I free fell into an abyss I knew nothing about. I did not know how to respond to the information I was given. I did not know how to share the information I was given and there was a chance the Urgent Care doctor was wrong. I went radio silent, for my own sanity. Or so I thought. I worked, focused on the present and my kids. I had an 8 week old, a 3 and a 4 year old. I could not wonder about the what ifs. Today was all I could handle.

When the 18th day finally came, I hit the ground so hard I made my own crater. However, I was in an unknown place where I knew no one, I did not understand the language and I kept getting the same pity look from all these really nice people. The one sentence that has stuck with me that I will never forget, "This is NOT your fault!" followed by "There was nothing you could have done to prevent this." After that it was a hurricane of "Coarctation of the Aorta", "Open Heart surgery tomorrow morning" and my favorite "There is no medical reason your daughter should be alive today".

These phrases should have made my knees buckle. But they didn't. That Urgent Care doctor saved my daughter's life. The doctor who told me it was not my fault has been one of my daughter's biggest cheerleaders. The head of pediatric cardiology who told me my daughter shouldn't even be alive has been a presence in her life that he is more like a family member then a health care provider. Those were not pity looks but medical care providers and other families that were welcoming us into a club we never asked to join. "The Heart Warrior Club" and I am a Heart Mom not by choice.

Sometimes that is the hardest part. When your whole life changes because of a medical diagnosis whether you or a family member everything you ever knew as safe and normal gets blasted into space, never to be seen from again. It makes my angry. Some days so angry I can't see and just burst into tears in the strangest places. I cannot tell you what is wrong. Just that it is wrong, wrong on so many levels my parental anger cannot be explained in just a few minutes or even a few hours. I have found ways to vent my anger some days good and some days not so good. Yes I realize we are talking about a 10 year journey and I have a lot of anger about it some days. Adding current day frustrations, I needed an outlet.

In recent years I have started doing 5k's. Don't get me wrong I am no runner. But I walk them start to finish and try and do better than the one before. I have put my body through 20 degree starting line temperatures as well as 100 degree start lines. Over the summer I started walking. Not just walking but speed walking. I can walk 6 miles in about 90 minutes at about a rate of 4 miles an hour. I have been told that it really fast. Some days my frustration is so bad that I walk myself into pure exhaustion. I shower and go to bed.

At the beginning of July I bought a new pair of kicks for a 5k. By the end of July I had walked 89 miles and wore the logo off the bottom of my shoes. Needing a new challenge I decided to try and walk 100 miles in less than 30 days. Upon completion of that with a day to spare, I still needed a new challenge. Boy did I find one. It was called the Muddy Princess and it kicked my butt but not before I did a little high kicking of my own. Basically it was a Mudder for women and it was fun; gross and dirty but fun. I crawled through mud up to my chest, up inclines and back down the other side that should have been illegal, rolled my ankle, over a 10 foot tire wall, through a series of 55 gal drums tied together down in a mud pit. My body was stained Southern Clay. To get out of the last obstacle I had to punch and kick my own steps in the mud wall to pull myself out.

Would I have tried these things had I had a heart healthy child? Honestly? Probably not. I can't even fathom where I would be today or what my life would be like had it not been for this life altering experience. Excluding family, less than 50% of my friends/acquaintances have nothing to do with a CHD or Madelynn's journey. The remaining more than 50% are because of Madelynn's heart defect. I lost friends because Madelynn was born with a CHD. It probably shouldn't but that made me angry.

More that 50% is an amazing group of people it. People I would not have been able to make it through day to day living without. Friends that reminded me, if my child can fight her way back from a near death experience, I can keep fighting and find a way every day. Some of these Heart family friends have picked me up off the floor and didn't even know it. Others days I listened to them vent, scream, yell, cry and was the pillar of strength to help them get to the next day. But when that call or conversation was over and I was in the silence of myself I wept. Not just cried, or shed a few tears but truly wept for them. Why did my child or their child have to be born this way? Why did my child survive and theirs die? Why is it so important that I go through this journey with them? What possible good can I do? I am just one person.

Some days I get to see the result of the good I do but not as often as you think. I know that is a selfish way to think but sometimes it would be nice to know that it wasn't all for nothing. Once in a while it would be nice to know I made a difference. The family you talked to felt a little less alone. The mom is little bit more at peace to know how she feels is normal for the journey. Otherwise why was I sent to hell and back?

One thing I have had to learn on this journey is never take anything for granted and that tomorrow is never promised, not for everyone. So what am I going to do about today? How do I make today and only today count? So for Madelynn, the anniversary of the beginning of her journey I am reminded to make every day count.

Week 24 of 52

I could say the good the bad and the ugly but it is so much more than that. This week tells you all about the type of school year Jack has had. For starters, he made history. He was part of the inaugural year in sports for his school that opened August 2016. His school, in the Fall, had a boys soccer team and girls and boys cross country teams. The boys soccer team brought the school their first win in any sport and won all of their home games and a few more.

Monday the school had an all sports banquet for all of the kids who played any sport for the school this year. I had no idea that this would occur, but so glad it did. I am not a big believer is participation awards. However, these kids at this school were the first to accomplish it and I believe they should be recognized. No one else can change the fact that the soccer team gave the school it's first victory or the girls basketball was the winning-est team of all the school sports this year. The kids need to be acknowledged for that.

Jack had been talking about the banquet and hoped additional awards would be given out. He wanted to be MVP. In my mind I was freaking out. If Katie and Jack won MVP in the same year how cool would that be. But what if he didn't win it or they did not give it out. How would I help him cope with that loss or disappointment. Had I been a good enough sports parent that he would congratulate whoever won it and be happy for them. But then I am like wait he scored the most goals, played any position that was needed and even passed the ball to other players to help them score instead of taking it himself. Secretly I think I wanted him to win it too. AND HE DID!!! Both of my soccer players were named MVP of their school teams.

Thursday is the last day of school and the and only a half day for Jack and Madi so I decided to let them skip. We have a tradition to keep. Every year since Phil's brother Jason's ashes were put to sea we go to the beach as soon as school gets out. We could not find a week long stay and the girls have camp next week so we had to make it a long weekend.

Now you are thinking this all sounds pretty good there is no ugly here. Oh but wait my friends. You see I had a very busy Wednesday at work budget meeting, check run and making sure everything was done so I could enjoy my weekend at the beach. I was at work may be 30 minutes when I receive a call from the school. "Hi this is Ms............ from the school, Mr. ............. (the vice principal) asked me to give you a call Jackson threw a water bottle at another student and hit him in the head. He cannot participate in field day he needs to be picked up."

I asked to speak with Jack because I could not pick him up myself. He was crying because he knew he was in trouble. I gently reminded him that no matter the mistake that I still loved him and that would never change. But I also told him I was very disappointed at his choices and that I would have to punish him for his bad decision. As a kid when you know you are in trouble it can be scary. I didn't want Jack to be afraid I wanted him to take his punishment and be able to move on.

Inside.....I was furious. I had to ask my very wonderful friend to get Jack and bring him home. Phil had to leave side work from half way across the world to come home and put Jack to work. He was NOT going to enjoy this day at home. But Phil also needed to sleep, he had to work Wednesday night before we left Thursday morning so I had to come and relieve him. What Jack did was stupid. It was not done with malicious intent and the school was already punishing him so I made him work until it was the end of the school day.

There is no excuse for what Jack did. My problem is that he has a very bad figiting problem when he is asked to stand still and wait. This especially becomes a problem when it is for any extended period of time. We are working on ways to help him with it. But is is a struggle. He did apologize to the other student without being told too and was truly sorry for the mistake he made. I cannot do anything else except move on. Jack has been maturing this past year and I hope that all of this is out of his system so he can really show who he can be in 8th grade. He will be part of the first graduating class of the school next year and I want him to enjoy that. Being a part of history can be really cool.

My MVP

A parents love should always be unconditional, but some days it is truly tested.

TTFN~

Week 22 of 52

The last 24 hours have been very hard. I discovered that my heart warrior did not pass her reading EOG again. Last year’s results showed she should have never been in the 3^rd grade to begin with. I knew this and my cries fell on deaf ears. I decided to let Madelynn repeat the 3^rd grade for multiple reasons. She struggled but was still successful. Her teacher knew with her disabilities she would not be able to complete the EOG but by law, I had to make her take it. Her teacher was working on her portfolio to be able to show proof she could move on.

I knew before the test she had proven her worth, she would be eligible to move on no matter the test result. Thinking that it would relieve some of her stress, I told her that the night before the test. Do your very best even if it is not enough for the test she earned her right to move on to the fourth grade. When she brought me the test results and I told her the result she was the most deflated I had ever seen her. It took every ounce of my being to keep it together and not just scream and cry right there.

Why is my child not able to do this? Why is my child not worthy of a passing grade? What could I have done to get her equal to her peers?

The answer is nothing. I could do nothing more.

My child was born with a broken heart that required open-heart surgery. They stopped her heart; she was clinically dead, repaired it and then hoped her heart was start again. Without this surgery she would have died. Because of this surgery, she has other problems that her brain does not fire like everybody else’s. I was given a gift. I have had 10 years so far of this gift and I hope this gift continues for many years to come. However, days like today make me feel like my child is not worthy and will never be good enough. It makes me want to scream.

So instead, I will love her with every ounce of my being. I will teach her to live life with no regrets. I will remind her that she always is enough.

I love you to the moon and back to infinity and beyond Madelynn!

As I remove myself from my soapbox just know that this summer and every day after today defines who she is not some state mandated test.

TTFN~

Finding a way

Finding a way

The love of a parent is like a brilliant bonfire at it's peak. The flames are large and colorful; something you can't take your eyes off of. And you don't want to.

Some days the fire is so hot you can't go near it. I hate the days where I feel like I can't reach my child. I hate the days where my words turn into ashes instead of rising in the air like a phoenix.

Waiting for my child to make the choice that turns the orange and red flames into brilliant clean burning blues. Blues so cool and smooth you feel like you can exhale. The cold air smoke rises from your mouth and dissipates into the nothingness. The anxiety is gone.

I do not like seeing mt child all slumped and closed off. A person of few words and lots of shoulder shrugs is not who I envisioned I would be raising. I do realize this is a marathon and not a sprint. I know that someday we will get there even though today feels like a losing battle. Today I feel totally defeated. I hope one day he finds a way to make the right choice. To find a way to be happy with the amazing person I know he is.

God help me until he finds a way.

TTFN~

Week 17 of 52

Kaitlynn was finishing up her middle school soccer season. The last practice before the last game she was awarded the MVP of the team. I was so taken aback I had no idea how to respond. This years team was filled with a bunch of petty girls and the social problems were a nightmare. Phil and I sat in the stands alone and families did not talk to us.

You see our daughter was not on a club team so we were not worthy of there time. It was miserable. But we came to every practice, every game and all that was required of her to represent her school. The only saving grace was our true soccer families came to support us and the teams on the field. When we played Piedmont Suzy and her daughter 'Merica (Erica) came and cheered on Piedmont while sitting on the Porter Ridge side. When we played Sun Valley we took time to speak to our soccer families from Sun Valley and Congratulate them on their win.

These my friends are true soccer families and understand what middle school sports is all about; teaching your children what good sportsmanship is. At the end of the day it did not matter what color your jersey was it mattered who your true friends were. I missed that when she played for her school team.

You see at the same time Kaitlynn also played for a rec team. These were the families we loved to be around. We laughed so much some days it even brought happy tears.While in school she was on a soccer field almost 7 days a week not including horseback riding lessons. When my daughter looks back on her life I want her to see what a well rounded human being we raised. I do not want her walking around with a chip on her shoulder thinking somebody owes her.

She worked hard on both soccer teams and when it was time for riding lessons she traded her cleats for cowboy boots and she was just as happy. For her to achieve MVP it was a total surprise, due to the pettiness of some of the other players on her school team. I want her to know how proud we are of her. She never gave in, never quit and gave back just as much as she received.

Back when she first started playing for her rec team her daddy would take her to practice. Some nights after practice her daddy would chat with the families; thirty minutes later they were finally on their way home. One night after practice  Kaitlynn was standing next to her dad while he chatted. He suddenly realized she was taller than earlier that night and had been taller for several minutes. It was at that moment in her cleats he discovered she could balance on a soccer ball for a very long time. It is one of her many hidden talents.

Congratulations for all of your hard work this season Kaitlynn. we are so very proud of you for never giving up on your passions. Thank you for making me a soccer mom you can be proud of.

~TTFN

Week 2 of 52

This year had not turned out as I had hoped so far. Monday Jackson was not feeling well in school but  was trying to make it through he day. One of his electives is "Big Bear". As a seventh grader he goes into a kindergarten class and helps out the teachers and students in an effort to be an example for the littles. He did not want to go to that class because he did not want to make anyone sick. A teacher sent him to the office only to find out her was running a fever. After picking him up from school I called the doctors office as I was driving home. As luck would have it they could fit us in if we could be there in 30 minutes.

Within the hour we discovered Jack had the flu. He did have a flu shot so he did not get as sick as others but he was down for the week. Phil and I took turns staying home with him and making sure the girls stayed as far away as possible. He slept A LOT that week. He was able to to do a little bit of school work but then he would sleep for two hours. I have never seen him this worn out, it really kicked his butt.

No parent ever likes to see their child sick and not operating at a 100% but sometimes it is nice just to be mom and take care of everything they need. I am not a stay at home mom by any means. I like my job, the adult interaction but I also like to turn it off and be a mom sometimes. I used a lot of my sick time this week taking care of Jack but I was glad I had it. We watched a lot of movies, played many, many card games, hung out in our PJ's and ate lots of bland food.

I was glad that he had a three day weekend coming up with Martin Luther King day Monday. It gave him time to sleep some more and build his strength back up. One day he won't need me like this and it will make me sad, I will miss it. So this week I am glad it was boring and was confined to the house it gave us time to just be together.

Hoping for a better week.

TTFN~

Week 1 of 52

2018 has started with a bang and certainly not in a way I ever dreamed. KT has decide she wanted to take horse back riding lessons. I love horses. There are amazing creatures but I know very little about them much less how to fulfill a child's wish to take lessons. So to see if she was truly serious I told her she needed to find a place for lessons and she had to help us pay for them.

At 14 it is not easy to find a way to earn money to help pay for her lessons. But she held on to all of her birthday money, did chores around the house, kept her room clean and all of her classes up at school. She earned enough for her first month of lessons. Her first lesson of 2018 was so cold  I thought I was going to freeze to death. It was a true test of the lengths I would go for my child to help her reach a goal. Even with frozen toes and fingers, I managed to take a few pictures.

As part of the lesson you have to retrieve the horse from the pasture
and prep it for your lesson. I love this idea and believe it is a great
learning experience.

She loves every part of her lesson.

This is Vuela (Vway-la) one of KT's favorites.

She had a little difficulty trying to put the saddle on. Being short and the
saddle being a little cumbersome makes it a little challenging.

Her favorite place to be no matter the weather. It is only about 35 degrees.

I could not duplicate that smile making her do
anything else.

Until next time. Thanks for the ride.

As parents we make choices and sacrifices for our children. I spent most of a Saturday outside in about 35 degree weather while KT did what she loves. It is certainly not my ideal Saturday but she is truly happy doing what she loves. We spent a few years telling KT no because of what Madi needed. Madi's CHD came first for so many reasons. It is nice to be able to say yes to a CHD sibling and just for a little while nothing in the experience had anything to do with a CHD or a sick child. Experiencing how the other half lives even though it was way too cold for this southern Mama was a day well spent. I may have not been born down her but 20+ years south of the Mason-Dixon line anything below 60 degrees is too cold for me.

Hope you know how much I love you Punkin!

TTFN~
Mama