Extra Credit, Dean "the Marine", Leave it Better

In the first few weeks of school, Jackson has learned some hard lessons. In his previous school which was a charter school the only grades you received was for work you did in school. There was no grades for bribing kids to bring papers back to school, no homework grades and no participation grades. Whereas in his public high school that is exactly what you get. Just for doing the homework you get a 100% homework grade. If you don't do it you get a zero. The students are given tons and I mean tons of paperwork to complete for the next day. It is actually parent homework. If it is not turned in by the next day, the student gets a zero for a homework grade.

Because of this adjustment Jackson has a lower than expected grade in his environmental science class. I told him he needed to bring it up immediately and he needed to figure out how. His science teacher already had extra credit posted. One of the choices was a stream clean up. We emailed the head of the clean up no response. We emailed him a second time no response. Jackson emailed his teacher to find out if he had to preregister to participate. Her answer was no so we decided to just show up.

Low and behold we arrive at a local park in Matthews, NC about 15 mins from our home and we meet Dean "the Marine". Dean is a 78 year old Marine veteran who served in Vietnam and a few other places. Clearly he is retired but filling his days covering a few acres of Mecklenburg County in Charlotte NC keeping the streams clean. Buried in a very busy retail area with a Costco, Dicks, Old Navy just to name a few is a beautiful patch of heaven. I have lived in this area since 1995 and seen signs for it but really had no idea what it was.

As we walked, talked, picked up trash and cleared the streams I learned more in 2.5 hours than I have in an entire day of everyday life. Did you know just Mecklenburg County NC there are over 3000 miles of streams. You read that right 3000 miles!! There are 3 yes just 3 employees who manage these 3000 miles. Yes 1000 miles per employee!! So the county relies on volunteers like Dean to help keep the streams clean.

Jack and I walked along the entire back wall below a huge retail shopping center and picked up trash so it would not end up in the stream below. We filled, just Jack and I in 2.5 hours more than two contractor bags fill of trash. We collected beer bottles, wine bottles, energy drink cans, soda cans, the paper cups that Costco uses for samples and tons of plastic groceries bags just to name a few items. As we spoke with Dean he also told us another bit of startling news. In all the years he has been doing stream clean only SIX volunteers ever came to help and that included Jack and I. I was speechless. This is why he did not respond to Jack's emails he didn't think we would show up.

For a little while Jack and climbed up and down hills, along a black topped path and circled back around and met back up with Dean at a beautiful stream. We climbed down in the steam and walked down it for a while pulling limbs out of the water, removing the big rocks and pulling trash out of the water. Dean walks this area making sure the water flow is not blocked to prevent flooding.

For local peeps this is the bridge you drive over to get from Costco to the Old Navy,
 Dicks, World Market side.

At the top of the hill where that rock wall is this other side
of the rock wall is the Costco parking lot in Matthews, NC.

A lonely fall leaf floating down the stream. Too many of
these in the steams can cause flooding.

A while back a huge tree fell over the stream. Dean took his chain saw and cut it up in smaller pieces but they are still too much for him to get out. He has turned the logs so the flow with the water and not against it until he can cut the logs up further and pull them up with a winch. I wish I was better prepared and Phil was with me. We could have made quick work of that log and any other things Dean has been trying to methodically do alone with out hurting himself.

The stream we stomped through pulling up sticks
and debris that can block the water flow. Also where
the logs are that still need to be removed.

As we walked back to where we met at the opening of the stream we sat and talked. I pulled my boots off and dumped the water out of them. We talked about some of the dangers of him being out here by himself. He told me how the VA supplied him with an SOS medallion for him to where around his neck. If he falls it will locate him and send emergency help. It also has a button to press if he is able. Something his family was grateful he wears.

Those of you that know us well we are a very busy family. I have a calendar in my phone and everyone is color coded. If you are not on the calendar we will not make it to your event. Knowing this was something that Jack needed to do for school it made the calendar. However, had it not been for that I would have continued on with my life and had no idea this goes on. Don't get me wrong I have seen stream clean up signs but I never stepped up to help. I can promise you this will not be the only time we do this.

Earlier this year when we went to Camp LUCK Family Camp, the theme was "Leave it Better". This is a perfect example of how were can do our part to leave things better. Dean "the Marine" will not be around forever and then what? Who will step up and take his place? Will they care as much as he does? Why do you have to throw your trash around? How long does it take to walk to the trash can?

Sometime in the next couple of weeks we will be doing this again. I hope to get my whole family doing this for a few hours on a Saturday. Please contact me if you are interested in doing your part. I would love for you to meet Dean "the Marine".

Spring 2019

As 2019 started we hit the ground sprinting and have barely come up for air. Since the middle of January KT and Jack have been on the soccer field. We made a deal with KT that she needed to try out for the high school soccer team and let's just see what happens. She was fighting us all the way because she was afraid we would tell her she would not be able to play rec soccer if she made the high school soccer team. As long as she kept her grades up she could play both.

Tryouts were three days long for two hours after school. During PE class the second day of tryouts she threw up in the trash can during PE. Her PE teacher told her to sit out the rest of class since it was her last block and she was going home anyway. Little did the PE teacher know that she would stay after school and complete the second day of tryouts. When Phil picked her up from tryouts she told him what happened. For someone who seemed hell bent on not trying out she certainly displayed her inner warrior and left it all out on the field.

Sadly when she came home and told me I laid the hammer down and told her she was staying home from school. She looked so defeated and then she threw up again. I thought for sure she had missed her chance. She finally decided this was something she really wanted and it slipped through her fingers. I reached out to her math teacher who also happens to be the soccer coach and told him she would miss the next day of school and the final day of tryouts. He sent me her missed assignment and also told me she made the JV team. We were all elated for her.

They have had 4 games and are 3-1 and KT scored a goal in one of the games.

As I see her mature and really show us what she wants I am proud to see a well rounded young lady who will body check you on the soccer field if you double cross her. She is taking ART1 and I am seeing her beautiful eye for art, kind of her hidden talent. She is horseback riding, playing on two different soccer teams and has decided she wants to go into animal sciences as an adult. It will be fun to see her progress.

Her art assignment on shadowing. My favorite to date.

I have yet to figure out how she gets that ponytail to fly but she does it with such flare. I still believe the soccer field is one of her happy places. Win or lose she is at home on the pitch.

                                      

This weekend she started her rec league games and it will be her biggest challenge yet. She is one of a handful of girls playing on against male dominated teams showing them who's boss. When I hear the opposing coach yelling watch out for number 6 she has a leg or number 6 is fast stay with her. The results this weekend were not what we wanted but she scored and the opposing teams know she will challenge them girl or not.

Do you see that face? She is going to kill me!

Jackson has been up to much different things. He has to decide where he wants to go to high school and he has been working on keeping his grades up so he can get in. His first choice is a magnet school that has an engineering program that is very competitive. He is taking high school math as an 8th grader, joined the chess club, plays on the same soccer team as KT and is also working as a referee for the rec soccer league. 

It has been interesting to watch Jackson this school year. He is in a mentoring program, Big Bear, for school with a kindergarten class. These little kids just love him to pieces. One day the kindergarten teacher stopped me in the hall to tell me how Jackson saved the day. She had a kinder student crying and was just inconsolable. She needed to help calm him. Jackson stepped up and taught the writing lesson for the rest of the students. They were engaged with him and the teacher didn't even have to asked him. This is his 3rd semester as  Big Bear. His current Kinder teacher all but begged him to come back to her class. When I am at school with Jackson random students just come up to him and hug him. He knows all of their names and can tell me all about each student.

He loves his Math class and is finally being challenged. One night the teacher sent home a large amount of homework. I did not even have to ask him if he had homework. Some of the assignment confused him. Although I could help him I encouraged him to email his teacher to ask for help. He figured it out before she emailed back but her answers confirmed he had done it correctly. It has been nice to see him maturing trying to advocate for himself.

Jackson's challenges with this season's soccer teams is his height. He has equal skill level but some of these athletes are almost 6 ft tall. He does not have the wing span in his legs and arms to race some of the players down the field. My only hope is that it does not discourage him since he is 13 playing in a 16U league. I hope he is able to learn some good take aways from the season win or lose. Jackson has also taken on the task of part time goalie. He knows his height is a disadvantage but he is trying to work smarter since he claims this disadvantage.

I cannot lie though my favorite part about his soccer season is that KT and Jack are on the same team. When Jack is in the box KT is a defender and does everything to help him. If they are both on the pitch they communicate well together. Win or Lose this is how they come off the field.

Jackson's latest venture is reffing soccer games. He helped out some last season and has been officially trained with a work schedule this season. Yes this is paid job for him. He was so mad at me right after the above picture was taken, he was running to the car to change his clothes and become more official. He was mad I stopped him to mark the event because he did not want to be late just because his mom was taking pictures. I snuck down to the field he was working and took a picture of him on the job. I heard he did a pretty good job.

                    

Then we have Pnut. She has always come with her own set of challenges. She has after school tutoring a few days a week offered by the school. She decided this quarter she wanted to join the Glee club. She has an end of quarter performance coming up soon. Hopefully I will get a few good pictures. 

She is also riding horseback once a week. I believe this is something that has really built her confidence. This week she was taking a trail ride with the instructor and other students and they started going up a small incline. Her particular horse picked up speed going up hill and Madi was not ready for it. The horse bucked her off the saddle and she landed on the horses neck. Trying to get back in the saddle she fell off. She did not get injured and did not think twice about getting back on the horse. She has no fear about most things in life and I am sure she even comprehends the ratio of her weight to the horse. She currently weighs about 55 lbs.

Lately with all of the soccer games she has just been tagging along and being a really good sport about it. I have tried to encourage her to bring toys and remind her she just has to hang out until it is over. She asked me since the car was so close could she just hang out in the car. I obliged and a little while later found this.

She is laying in the van watching a movie.

When the movie was over she found other siblings that were just as disinterested at the soccer game as she was. I found Madi climbing on an old, very large tree truck and she stopped for a picture. This truly exemplifies Madi beating to her own drum. 99% of the time she does not have socks on with those boots. She loves being barefoot, she comes by it honestly.

Someday we will come up for air but I am not sure when. In the meantime I have at least stopped briefly to give an update. 

TTFN~

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

Madelynn's Heart Birthday.....

Nine years ago today someone I had never met told me my 10 week old child needed open heart surgery in less than 12 hours. Her heart was the size of an acorn and if I did not let this complete stranger operate on my child she surly would have died. There was no medical reason Madelynn should be alive today other than God had greater plans for her bigger than I could have possibly imagined.

I won't lie it has been a rough week. A few days ago was the fifth anniversary of Phil's brother being killed in a very tragic accident. When I think about how the events of that day effected Phil it makes me cry. It is one of those things you never truly get over. To pour salt on a very open wound one of my most favorite heart hero's, Brandon,  passed away Tuesday. He was having some difficulty when the doctors went in to try and relieve that difficulty he had a massive heart attack and died at the very tender age of eleven.

So to say the least my emotions have been all over the place. The joy of celebrating Madelynn's 9th "Heart" Birthday always makes me smile. Over the weekend Madelynn made a poster to show her heart defects and added pictures of her journey along the way. Tomorrow on the anniversary of her life saving surgery she will stand before her 3rd grade class and tell them her story for the first time. I have always told the story for her. Monday she will share her story her way. I want her to be proud that she is a CHD Warrior. I don't want her to be afraid of her journey. If something happens down the road and her heart needs additional correction I want her be strong enough and aware of everything she has already been through.

Sometimes being a good wife to a husband who suffered a great loss, being a good mother and advocate for my child to save her life and being a good friend to a mother who just lost her amazing son is more difficult and physically exhausting than I can fathom. I had posted on FB that crafting gives me peace. It takes me to a place to regroup and find my strength and for a short while nothing else matters. However recent events I needed something more and as always God provided it.

We were invited Saturday to explore 75 acres of land that Papa Dave bought a few months ago in South Carolina. I won't lie spending almost 12 hours out in the country where my cell phone didn't work with in a 10 mile radius of the property was magnificent. I stood in glorious silence while my children fished and were not interested in any electronic device. Sometimes the pond was so still from the lack of sound it looked like glass. The kids explored an old tobacco barn, cleaned horse stalls, collected pine cone (for Mommy's crazy craft ideas), played with a litter of hunting puppies and even walked a pasture full of rescue horses just waiting to be broken and trained.

By the time we left the kids we 12 miles past exhausted and wanted their beds. I wasn't sure what we would do for a fall adventure because I have been so consumed with everything I committed to in everyday life that this adventure was just what the soul needed. My only regret of the day was that I never took a picture of the five of us. Although in a way this really bummed me out the fact that I was so consumed with being outside and the kids having fun I have other pictures to share about our adventure.

Madi on Papa Dave's tractor

Madi and Cash running the fields.

Madi and Jack taking a ride on the back of the gator.

KT and Daddy fishing.

Daddy and Madi trying to get the one that got away.

KT in heaven one of Papa Dave's rescue horses.

One happy girl.....

Jack taking a driving lesson on the gator with Nana Patti.

Papa Dave's daily morning view.

Happy Heart Birthday Madelynn!! I never know where this adventure will take us and I am so proud to be your mother. I hope you do an excellent job presenting your story to your classmates. Love you to the moon and back.

TTFN~
Mama

When life is not all dolphins and sand dollars........

The last few months have been a very difficult journey that I have battled within myself. I have cried a lot. I have felt like such a failure on a regular basis. What it has come down to is I did not fight hard enough.

At the end of May and beginning of June everyone was posting on social media about the end of the school year and their child rising to the next grade. I stressed about the EOG testing and knowing that Madelynn would not do well. I tried at the beginning of the school year to get her held back and to repeat the 2nd grade. I really felt it was best. However Madelynn's new school only had an admissions director in the spring of Madelynn's 2nd grade year. Her previous school lied about her ability and passed her on, they knew she was leaving. Once the principal was in place I did not fight harder for her and I failed her.

After repeated conversations with the principal this year, we have decided to have her repeat the third grade. I have tried to make peace with it but there is still a part of me that feels like I failed her. When Madelynn went to her yearly physical this summer we talked about possible learning issues and her being retained. At the end of August we will take on a new specialist and have Madelynn tested for learning disabilities. It feels like we have taken 10 steps backwards.

It is possible Madelynn was lacking oxygen early during her heart journey and it affected the way her brain processes things. My mind is racing about what things will need to be adjusted for Madelynn in school and fighting to make sure those things happen.  We still struggle daily to get her to eat she will be 9 in about two weeks and still weighs less than 50 pounds. She has been going to tutoring 4 days a week this summer in hopes she does not lose what gains she made in the school year even though it wasn't enough to move on to the 4th grade.

I have really tried to find the positives about this. There are a few and in the end I hope it will be for the best. I am really working on trusting this is all part of God's plan. The one that brings a smile to my face every time is that because of this change my best and I will have daughters graduate from high school the same year. I know this is a very selfish reason. but I love my best friend like I love my sister. I also know 10-15 years from now none of this will matter. It won't change how much I love her. It won't change that I will always fight for her. It won't change she is worth every breath I take.

During our first week of summer break we were off to the beach, for me to drown my sorrows and forget about them for a little while. For my kids to have an amazing time on the sand. We saw dolphins, harvested our own sand dollars, walked miles daily on the beach for just a little while the rest of the world did not matter. But sometimes life is not all dolphins and sand dollars and we have to tackle reality and fight it head on, even when we don't think we can.

P.S. Katie and Jack will be entering 8th and 7th grade in late August.

TTFN~

Camp LUCK Family Camp 8 years and counting..............

Everyday this week my facebook memories have popped up a picture from Camp LUCK Family Camp. Tomorrow just like the last seven years we will be headed to the 8th annual Family Camp in Kings Mountain State Park.

In May of 2010 Madelynn was about 21 months old. Because of her heart journey, we had made some new friends who were like us; trudging their way through congenital heart defects (CHD) and everything you never wanted to know about it. Some amazing people wanted to create a camp where kids with CHD's could go to camp and experience everything that goes with it. But what Camp will accept a child with a heart condition let alone what parent would send their heart warrior to overnight camp for a week.

To help families understand what camp would be like the whole family is invited to come to the camp ground for a weekend in May and get a taste of what camp would be like for their heart warrior and one sibling. Madelynn wouldn't be eligible to attend Kids Camp for five more years. I almost didn't go because she was so young, that would have been the worst mistake.

The experience was AMAZING!! We had the best time. As the kids have gotten older each year I wonder will this be the year they won't want to go. In February I registered us to go once again. The same day our bank card was hacked. I tried to mail a check but it never made it. I thought maybe this was God's way of closing the chapter for us on Family Camp.

As I pondered the idea of skipping Family Camp this year, my kids were upstairs playing. I have no idea what they were playing but I suddenly heard them sing "Camp Songs". It made me smile thinking of all the great memories we have of our adventures at Family Camp. So I asked the kids about camp. They first thing they asked me, "Are we going to Family Camp this year?"

"Do you want to go to Family Camp this year?"

A sudden explosion of everyone talking at once and telling me why they want to go back to Family Camp this year. Camp LUCK Family Camp is part of us just as much as we are a part of camp. Some years it is like old home week. Friends you haven't seen in a really long time suddenly appear. You start chatting like you just saw them yesterday. One of my favorite things that happens at camp is that nothing else matters except what is right in front of you right now.

The outside world stops. Living in the moment with lots of laughs, games and new adventures. If there is ever any one thing I want my children to take away from our experience as a heart family and coming to camp is that we lived.

We lived to scale the climbing wall
We lived to learn how to paddle board
We lived to make new friends and renew old ones
We lived to celebrate that we are stronger than CHD
We lived to understand there is more to life than just a CHD

Family Camp 2010 First Luau Lunch

She had no idea what to think.

Pure Joy living in the moment with Daddy

Camp is like her second home.

Not afraid of the water or a boat

She loves the archery range.

Her favorite thing to do.

Her favorite camp volunteer.

One year even Aunt Jacquie and Uncle Tony came along.

Madelynn's CHD diagnosis has no cure and it is forever. We want her to experience everything life has to offer, Family Camp helps us remember that. We hope you all have a great weekend and I will post pictures and hopefully have great stories to tell.

TTFN~