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~