OMG!! Kaitlynn is 13!!

Oh Em Gee Kaitlynn is 13. I did not studder and I am not wrong my beautiful daughter Kaitlynn was born 13 years ago today.

The last thirteen years has been quite an adventure. I am so proud to be your mother and have enjoyed the ride immensely. You make me laugh everyday. I am amazed to watch you play soccer, your clarinet and craft jewelry all in the same week. Thank you for always making my days worth everyone. Love you to the moon and back.

TTFN~

Biking a mountain to normal.....

Lately I have been working through an internal battle. As a Mom everyday is exhausting. I realize because of some of the choices I have made my life is crazier than most. I chose to let all three of my children play soccer. I chose to let my oldest play select soccer that includes some travel. I chose to let my son try out for the Olympic Developmental Program for soccer, knowing he might make it and my life changes forever. But what kind of mini humans would I be raising if life were easy and simple.

However, I did not choose for Jack to be sick off and on his first three years of life. I did not choose for his ears not to drain, his tonsils to be too big and his adenoid to be such a nuisance. From 11 months old to three years old I surrendered him to a surgeon three times. Ten weeks after Jack's last surgery Madelynn required her open heart surgery. I know with 100% certainty I did not choose for Madelynn to be born with a congenital heart defect. Nothing about the last ten years has been easy and simple.

Jack has no tonsils or adenoid. He has scar tissue in his ears from multiple sets of tubes. Yet despite his imperfections I have almost forgot about those days. He was so young he doesn't remember them. If he does he has never talked about them. 

However with Madelynn her story is different. Madelynn was born with a congenital heart defect for which there is no cure. The last few weeks I have read or heard that line "there is no cure" more times than I care to remember. Madelynn's heart has been repaired. A repair is not a cure. For the last few years I have treated her repair as a cure. I have treasured her leaps and bounds forward and almost forgot about those horrible days eight years ago. One of my reality checks came when one of her doctors told me until she reaches puberty he is not comfortable releasing her. I have read so many stories about CHD survivors lives change as they mature.

In an effort to try and savor what we have today, we left town for our annual Thanksgiving Exit. I did not want my life to be consumed by what could be. It is exhausting just trying to be a parent. To be a parent of children with medical needs some days is too overwhelming. We have created a tradition during our Thanksgiving Exit that we ride to the beach by bike. When she was younger Madelynn would ride by bike seat attached to the tandem bike Phil and I would ride. In recent years Madelynn attempted the ride on her own bike, the first year, with training wheels.

I have never been more stressed about a bike ride in my entire life. Round trip it is just under three miles. For a 7 and 8 years old that is a haul. Her first attempt did not go as expected. We had to tie her bike to another to pull her the last few blocks home. This year Madelynn completed the entire round trip. She didn't even need help climbing up the draw bridge and over to the beach. I was so proud of her. When we were ready to leave the beach and made it to the top of the drawbridge again I made her stop and take a selfie with me.

If at some point down the road her body matures and her heart cannot handle the change I want her to know she did it. She climbed a mountain and made it down the other side. I want her to remember and see that I have proof she is a fighter. I know that her open heart surgery is not a cure. I know that as her body matures her heart and missing part of her aorta may not be able to handle it. Sometimes I hate being reminded that life cannot be normal. However, I have proof that just for a little while it was. 

TTFN~

When the stars come full circle......

When I was in my second year of college I made a decision to change roommates. It was the best decision I ever made for so many reasons. My new roommate was wonderful, such a beautiful person inside and out. She loved the stars. We had them on the ceiling. When the school year was over she took a few of those glow in the dark stars on a piece of paper and wrote, "The God who named the million stars knows your name and He loves you more than all of them combined. To this day I still have that piece of paper.

Currently we are travelling home from our annual Thanksgiving Exit. Most of you know Thanksgiving is my favorite holiday. Madelynn came home from the hospital a few days before Thanksgiving after Open Heart Surgery in 2008 and in 2009 was the first time we could take her out of the state. Today we are traveling home from this annual trip. We decided we would explore someplace we had never been so we stopped at Tybee Island, GA.

After dinner even though it was dark, we walked down to the beach. I am not going to lie it was so dark it scared me. You could not see your feet in front of you. The area was so uncommercialized it was a flat out black out. We made our way to the pathway and bridge to cross over the dunes and onto the beach. All the sudden in the darkness I looked up up. The sky was a satin black blanket filled with jewels that sparkled. I had never seen so many stars in the sky. I could have laid in the sand for hours trying to count the stars. Even though the kids and Phil were there it was as if the world had stopped. I could barely hear the ocean and I was standing right in front of it.

During that deafening silence I thought of my old roommate and her wise words. I can't tell you why I was so struck by her note so many years ago. But tonight I lived it in the beautiful darkness. As we are regularly reminded of Madelynn's journey coming full circle and being able to enjoy events at one point we never thought possible, tonight I lived my friends words. I know I am loved more than all of those stars combined. But when you see all of the stars and you are one little speck in this great big world it is a great reminder.

Hoping for some sunrise pictures in the morning.

TTFN~

Eight years and counting...............

Eight years ago today at this moment I was sitting in a waiting room with Phil, my parents, Phil's mom and sister. Jack and Katie were at preschool. While we waited Madelynn was put under anesthesia, her rib cage was broken, her heart was stopped, holes in her heart were closed, part of her damaged aorta was removed, her remaining aorta spliced back together, her heart was restated, her rib caged wired back together and we waited.

We waited to see if her body could withstand all the trauma. We waited to see if she would awaken. We waited to see if we would get our little girl back.

It was not without breathtaking anxiety, sleepless nights and lows I could have never fathomed. Her heart had difficulty keeping up at first, her lung collapsed, her diaphragm became partial paralyzed and she was very sick. I had found rock bottom.

Thankfully her medical staff did not know the definition of that phase. They smiled and encouraged and helped pick us up. They reminded us they had not given up. We had family and friends who helped along the way and each day the sun shined a little brighter. Eventually Madelynn smiled again.

We are grateful to Dr Alfred Kendrick for finding her heart defect when he wasn't looking for it, to Dr. Christopher Baird for completing the open heart surgery that saved her life, to Dr. Nicholas Sliz for reminding us this was not our fault she was born this way, to Dr. Alan Harsch for encouraging Madelynn to live life with no limitations, to Dr. Douglas Chen for helping monitor her day to day care. For the nurses who never gave up, started each day with a smile and making us feel like we were the only patient that day.

Today we will breath the air a little deeper. Today we savor the sunshine a little brighter. Today Madelynn's smile will fill my heart a little fuller. Today we move on and enjoy another year that at one point we never thought possible.

Happy Heartaversary Madelynn!! We love you to infinity and beyond.

TTFN~

Making the long haul down 601 through every open door

Eight years ago, almost to the day, Madelynn was being transferred to a step-down room in the Cardio Vascular Intensive Care Unit (CVICU). Her heart surgeon happened to be walking down the hall during the transfer when suddenly they realized she was in trouble. The next thing I knew she was reintubated, very, very sick and they were talking collapsed lung and paralysis in her diaphragm. Just a little too much for this momma to take since open heart surgery was less than a week prior.

But she fought, every single day she fought harder than the day before.

As part of her release from the hospital, she was under the care of a pediatric pulmonologist. Seeing this specialist had a very rocky start. Thanks to Madelynn’s primary care doctor, we found an excellent choice. Of course, it wasn’t a choice he was the only one for a few hundred miles. However, God always has a plan and it was a good one. The worst part was he was a few counties away and a long haul. The appointments are never quick because she must complete breathing tests to see how her lungs and diaphragm are functioning. Sometimes we would get there and Madelynn was in distress and breathing treatments were required.

Every time that happened I felt as if I had failed her again. How did I not see that? How did I not know my own child needed help? I would usually cry all or part of the way home thinking I failed again. The two hour round trip drive became a form of therapy for me. Madelynn would usually sleep most of the way, Phil is at work so me, myself and my thoughts became the entertainment.

Today’s appointment was no different. Madelynn had earbuds in and I was driving us down HWY601 through three counties. I should admit I have learned to love the drive. It is a 2-lane highway, large old barns, horses, cattle, towns with only a post office and beautiful rolling hills. In the last eight years, I have watched a factory go up, old barns come down and parts of the country become parts of cities. Usually this appointment takes place in the summer, this year it was pushed back to late fall. The fields weren’t smothered in corn taller than my van but cleared and you could see the farms getting ready for winter, rolled hay, the trees were bare and farm equipment put away.

Every time I go to this appointment I have big dreams. I am always let down. My hope today, the doctor would clear her for good. Not quite. During the testing Madelynn, must try and blow a constant stream of air without taking a second breath. It is turned into a video game so it is very interesting for the kids. Her player bounced across the screen so it was messy but she did it. She is then moved to what I call the big box. It is slightly larger than a telephone booth. She is hooked up to machine and must bowl a strike with her breath. Ultimately, she must take a deep breath and then empty her lungs without taking a second breath. She did not make a strike. The ball never made it to the pins.

After a few more details the nurse needed to obtain, we met with the doctor. He told me that reviewing the results he believes either her diaphragm is completely healed or her mighty body, as tiny as it is, has figured out how to compensate for what her diaphragm can’t do. All great news right!!!?? Then he tells me he is not ready to release her yet. He does not know what her body will do as it matures and ages. Will it be able to keep up if she is compensating and not completely healed? So, we are released for the next two years and will see him in 2018.

I refuse to be discouraged. This will be hanging around in the back ground for the next two years. But we do not have any limitations. We can still live life just as before. Let her do and try new things until her body says no. We keep moving forward.

God knew I would put thousands of miles on my car making the drive. He knew the reflection time was necessary. He knew he had to take all the other doctors away so we would travel to this one. He knew I would love admiring his magnificent creations. I will always travel the long haul down 601 because I believe. I believe He has big plans for Madelynn and I will never close an open door. 

TTFN~

A Hard Day

Today was a hard day. 

Earlier this year I made a commitment to complete 5 5K's in the year.  Of the 5 of them, three were all about the heart. The first one was the Cupid Cup 5K which supported Cardiac Rehab. The third was Heart of Warrior 5k supporting 335 Heart Foundation. My 5th and final one CHD Remembrance Day 5K supporting Mended Little Hearts. 

Today is CHD Remembrance Day. Today is the day we honor all of those heart warriors who lost the good fight. I am not going to lie sometimes it makes me cry. Some days I get stuck in thought wondering why we had to walk this road, why did Madelynn survive (medically she shouldn't have), so many why's and so little answers.

But then I think if not for CHD's I would have never met Connie, Roger and Jessica. They are a heart family that has brought more laughs than tears into my life. We have shared more meals together than some of my own family. I just know it is always a safe no judgment place. So our horrible experience found great friends. If not for CHD I would not have been able to help families reeling from a recent diagnosis. I have talked families off the edge of their anxiety to help them clearly and make good decisions. I have been able to use my experience to help others.

Today while my youngest two children were on the soccer field I walked more than 5000 step to complete my final 5k. I had invited others to walk with me but life seemed to get in the way and I found myself walking it alone. All of the 5k's I completed this year that were heart related I completed alone. At first I was extremely disappointed but when I realized I had completed all the others alone I buried myself in my thoughts and completed my final 5k.

A few days ago I had an epiphany. I discovered that CHD Remembrance Day is also the same day that Phil's brother passed away from a tragic accident. This was another event in our life that changed everything. Phil was very close to Jason. I had to call Phil to tell him his brother was gone. I was afraid someone would call him while he was driving home so I called him before he left the job site. Sometimes just thinking about all the experiences he and his brother will never share makes me cry.

In one 24 hour period so many emotions crossed through my brain it was almost too much. The best way to for me to keep moving forward is to clear my head. So the Remember Our Hearts virtual 5k was just what I needed. I walked what seemed like a million laps around a soccer field. A place that seems like a second home. When I was finished there was Phil standing there to greet me. Just like most of the journeys in my life it was not how I thought it would go but it ended with Phil and I standing together.

TTFN~

Sending our regrets but always grateful for the support........

Eight years ago this month I found myself standing in an urgent care with a doctor I had just met. He was telling me that he believed my 8 week old baby girl had had an undiagnosed congenital heart defect. As I sat there listening I believe I was in some sort of shock. The doctor told me to go home and wait for him to call me back. He was going to call in for an immediate second opinion and get back with me that day. Thinking back on that day the doctor must have been pretty certain something was wrong because he was able to get a second opinion on a Sunday morning during church hours.

Friday night I found myself in the same urgent care, with that same child but for a different reason. Let me reassure you she is ok, she just managed to obtain a little infection. But I will say it is all I could do to not hyperventilate when I walk through the door. I tried to get Phil to go to the children's hospital urgent care not far from our house, but he misunderstood and he brought me to this one. Sometimes it is all I can do to keep it together.

A week from tomorrow we will be celebrating Madelynn's "Heart" Birthday. One of the scariest most grateful days I have ever experienced. Tonight all of our Heart Family Friends are partying it up at the Camp LUCK 6th Annual Auction and Casino Night. It is one of the two major fundraisers that makes everything Camp LUCK does possible. I wish we could have gone. With our full soccer schedule and Madelynn still not quite 100% it was just not in the cards tonight. It made me sad because I love being able to support Camp LUCK in any way I can.

Because of Camp LUCK we have made some amazing friends. We have found a support system that understands the good days and bad. They understand the anxiety of the next check up, test results or when the next surgery will be. Sometimes you don't have to explain anything to them because they already know. Just knowing someone is with you or has been in your shoes makes the journey just a little bit more bearable. We have come along way since those very scary days October 2008.

Tonight if you feel so inclined to make a donation on behalf of Madelynn and all the Heart Kids that benefit from everything Camp LUCK does here is the link: www.campluck.com/donate/
You see Camp LUCK kids camp is FREE for all of the heart kids to attend and bring a sibling for a week. Not to mention all of the support available to help families through a journey they never thought they would be on.

Thank you Camp LUCK we are so sorry we have had to miss the event.

TTFN~

Raising Warriors..............

I write about Madelynn's heart journey all the time. But there is more to the heart than it's physical function. More times than I can count, I have been stopped by friends, other parents and complete strangers telling me what heart my oldest daughter Kaitlynn has. 

As a parent, my ultimate goal is to raise a well rounded human being who will be an asset to society. This is not an easy task for anyone involved. As a matter of fact, it is the hardest job I ever agreed to take on. Lately, the fruits of my labor are slowly coming into focus. Kaitlynn started middle school this year and it suits her 110%. I am in awe daily.

Lately Kaitlynn has met her match in Language Arts, Band, Honors Math and Sports just to name a few. One day she came home crying and screaming she hated her Language Arts teacher. I asked why. What it boils down to is that this teacher truly challenges her to ALWAYS give 100% and sometimes she fails. She has to meet the challenge show the teacher what she is really made of. She didn't like my answer but she knew I wasn't wrong. Her goal is to have an A in this 6 weeks. She is almost there.

A few weeks ago Kaitlynn was called out in band to play a series of notes that was considered a test. She could not play the notes. Again the tears came and the screaming. She hates the band teacher, this is too hard, she just can't do it.......on and on. So again I investigate. The band teacher is strict and with good reason. She also runs the high school program. This program is so successful it was invited to play in Hawaii at Pearl Harbor Day in December. Again Kaitlynn was forced to meet the challenge. Grateful for the help of a very generous friend's daughter who is a middle school music teacher, Kaitlynn retakes the test tomorrow. She can play the notes. Hopefully she keeps her nerves in check and shows the teacher what she really can do.

All year long Kaitlynn has maintained an A in Compacted Math (Honors Math). Thursday before Easter she had a panic attack during a test and could not finish it or stop crying. Her teacher called me very concerned. He said after break he wanted her to take it again. The title of the test was Volume and Surface Area of Rectangular and Triangular Prisms and Pyramids. For a math geek like myself, when I hear this I see formula's and want to start calculating, pretty easy. Come to find out the entire Honors class bombed the test and everyone had to take it over. Again she stepped up to the plate and brought home 100%. She currently has a 98% average in the class.

In a few weeks Kaitlynn will have been playing travel soccer for about a year. This journey has not at all been what we thought it would be. She joined a team that came off an amazing high of winning it all for their age group. In the Fall the team lost as many games as they won. Many parents are discouraged and wanted answers. For me as her parent, if she gave 100% on the field and did what the coach asks of her, she did her job. Win or lose she did her job. 

She has taken a beating this spring season already. So much so she was laying back in a game. After the 0-1 loss I asked her what happened? She started giving me all the reason's she could not succeed. She was elbowed in the head without a penalty call, she was cleated in the calf, the girls are so much bigger. I heard excuses. Phil and I explained to her a little shouldering back and forth is legal give back what you get. Kaitlynn is incredibly smaller than most of her opponents she needs to play smarter. In her most recent game you would have thought she was a foot taller then her actual height, her punts were travelling great distances and the other team could not score while she was the keeper. The game ended in a tie but when she walked off the field she held her head high, she gave 110%.

I took a few pictures from last weekends game. 

Warming up and practicing her form before the game.

Just to give you an idea of how much smaller physically she is.

But yet she can make herself larger than life.

I have never seen someone have so much heart in everything they do. I have talked her off the ledge a few times, reminding her she is better than the circumstance and she will succeed. And she does. I cannot wait to see more of her journey unfold. Hoping for continued success and fewer tears. Her little sister may be an actual heart warrior but Kaitlynn has the soul of a warrior and will always succeed. Love you to the moon and back Punkin.

TTFN~

Savoring the gifts before you......

As Soccer season came to a close in the Fall, Madelynn told me she did not want to play in the Spring. I told her we would talk about it in the Spring. In February, Madelynn and I had a conversation about her playing soccer. She has talked about wanting to dance. So I promised her if she played another season of soccer and gave it 100% I would investigate dance. At this point I still have not found a studio for her.

She however has found her own studio and it requires soccer cleats. She has danced her way down the field. In her last game she acquired the ball at more than half field. She managed to get past every single player on the other team. As she was about to shoot she realized they are hot on her trail and her teammate was calling for the cross to try and score. She sent the cross and they scored. It was a beautiful drive down field. She is learning how to be a team player and make her own way.

On one of her next possessions she took the ball all the way down, everyone close behind and no one to cross it too this time. She took the shot. The keeper stopped it. She ran so much in that quarter and still wanted to play in the next quarter. To try and give her a break and still play coach put her the box like her sister. At this age her big sister is allowed to be behind the box coaching her.

The game ended in a 2-2 tie, It was not the result we were hoping for but I was in awe of what I had witnessed. Not only had Madelynn upheld her end of the bargain, she exceeded it. To the stranger on the street she is a very tiny 7.5 year old weighing about 43 pounds soak and wet. To me she is a TRUE WARRIOR who fought her way back from a hell I would not wish on my worst enemy. On the days she wanted to give up I carried her. On the days I almost gave up God carried us both.

Never in a million years would I have imaged I could post pictures like these.

She never stopped fighting for the ball.

She found her opening and took off.

She met a defender but didn't stay long.

Her teammate calling for the ball. 

The big cross for the score.

Found her self down field alone so she took the shot.

This is a sobering reminder children with heart conditions don't own soccer cleats. I will never understand why we were given a second chance and other families did or will not. What I do know is we will never waste this type of gift, EVER. Madelynn's story is one of hope we must continue to share.

My favorite part of this game was watching Kaitlynn who had a bye week coach her little sister from behind the net. It was sweet. It was again another one of those moments I see as a gift and will never take for granted. 

Teaching her all she knows.

They did not score on her. Thanks to her big sister.

Learning to treasure every moment as a gift, document it and remind her never to waste it.

TTFN~

Seventeen years later......

Seventeen years ago Phil and I were getting off work early to sign our life away on our first home. We were both working full time and I was going to school at night to finish my accounting degree. The house was so big for two people three bedrooms, two and a half bathrooms, unfinished bonus room, two car garage more than we needed.

Today this same home is bursting at the seams. Phil and I now have three kids, two dogs, two cats (outdoor) and a fish. Since 1999 I have redone every room in the house at least once. Since 2012 they are all getting a second go round. I have scrapped popcorn ceiling out of every room except three, mudded, sanded and new coats of paint. All windows have been cased in sanded and painted. Every floor has been replaced. All of my blood, sweat and tears are in every room.

But these are all physical things that have changed our home. If the walls and floors could talk you would see a movie of flashbacks. Neighbor kids coming to the door to ask if Mr. Phil was home. They always wanted to play video games or throw the football around. As the reel ran, you would see the tears of joy shed when we found out our first baby was coming. You would see all the laughter shared with family and friends over meals. The days when some of our beloved pets have crossed over the rainbow bridge. Many late nights in the rocking chair with feedings and children that would not find sleep. The giant pig we roasted in the backyard and the beer caps we picked up for years after that roast. The giggles, boo-boos, sweaty faces and tears of our children as they are growing.

One of my favorite stories about home is Bob. Our home was new construction in 1999. There was no fenced in back yard, no trees, shrubs and there was barely any grass. Every single plant life on the property Phil and I planted. One Saturday we went to a green house and bought three trees. One was a weeping willow, one was a burning bush and the other was just a tree. No tag on it, I had no idea what kind of tree it was. We named him Bob. We planted these trees in the summer of 1999. A few years later this tree started spitting out acorns and lots of them. We planted a very fast growing oak tree. Bob now covers 2/3 of our backyard in shade.

In 2008, Phil went and bought wood and rope. He made some very sturdy old school swings. Bob's branches were just right for hanging swings. I can not tell you how many carefree summer days and nights the kids and I have swung from Bob. This year we discovered Bob ate the rope around his branches and we had to remove the swings. Over the next few weeks, I hope to have new swings hanging from Bob.

Every memory made in this house is ours.

Phil and I laugh that we closed on the house on April Fool's Day. We were told to bring over $1200 to closing. When we arrived and started signing papers only $500 was required. Phil and I thought it was some kind of joke. Sure enough it was right. I guess it was God's way of making sure we could pay cash for the new refrigerator we needed.

Today our house seems small, every single orifice of the house is full. I am in the process of making sure all the kids have their own room and I still have my crafting and design space. The goal is to have this part done by Madelynn's first communion in May. I hope to continue to make lots of memories in this house even if it includes sadness and tears. Knowing our friends and family it will be over powered with joy and laughter.

Happy April Fool's Day Phil! Thank you for continuing to bring laughter in our home.

TTFN~

Trusting the reason and purpose.......

Back in 2015 employees of my job were asked to bring in some of their works of art. I have been to Painting with a Twist and The Tipsy Paintbrush and created a few pieces of art. I cannot call them Works of Art because they weren't that great. The art was hung in the kitchen where we eat lunch just to brighten up the place. 

Recently we received new pieces of art to replace the original ones hung up. The staff member who gave it back to me said I should hang it up somewhere. I told her it was not my best work and I did not want to hang it up. She told me I should create what I am good at. I had been sketching phrases for a new piece of art. Saturday I was stuck in the car travelling for Kaitlynn's soccer game and it just all came together.

Since the first of the year I have been carrying around a book to help me put my thoughts on paper. I have been drawing a blank when I try to create and this really helps.These phrases came from our parish mission, songs I recently heard or phrases that just struck me. My true intention was to finish the design to hang in the kitchen at my job.

However when I finished the art I looked it over and a very special heart family came to mind. I can't tell you why. I had nothing to back this urge up. Something just told me to give it to them instead. So I turned my hotspot on while travelling down the highway and posted the art to the heart mom's facebook page.

The response was stunning. The family needed a pick me up and a reminder that they were not alone. As I read the heart mom's response I wanted to cry, I knew at that moment why I needed to send it to them. So many times I get the urging to do things and don't understand why. Very few times do I see why or understand why I am called to do these things. This time I did. 

Here is the piece of art I created. I can't tell you why it struck the heart mom to tears. What I do know is this family needs to be surrounded by prayer warriors. They need to be reminded to never give up, and trust that God has a reason and a purpose.

TTFN~

one of five..............

As most of you are wiping the sleep from your face this morning I will be lining up at the staring line for the annual Cupid Cup in 25 degrees. I have a personal goal this year to complete 5 5k races in 2016 and this will be my first one of the year. This will be the third time I have completed this race and the second year in a row I am stupid enough to run in below freezing temperatures. I have know idea why I would put myself through this torture,

Oh wait yes I do.................

A 5K is 3.2 miles.

Today my first mile will be for all of those mothers, fathers, brothers sisters, aunts, uncles that utilize cardiac rehab after a cardiac event. My father suffered a heart attack a few years ago. He takes care of himself and was able to access cardiac rehab in his recovery. It is a vital part of recovery.

When I start my second mile it will be for all of the congenital heart defect warriors like my Madelynn. All of those children who have endured a most unimaginable start in life that includes open heart surgery many (times more than one), weeks and months in the hospital, endless doctor visits and other tests that are not part of growing goals of a new born. If they can fight through this journey I can fight through my second mile.

Finally when I reach the start of my third mile it will be the most grueling of the day. I will be tired, cold, my lungs will hurt and I will want  to give up. I can't, I won't. This mile is for the all of the heart warriors who have earned their wings, all of them too soon. They fought until the very end I can continue to put one foot in front of the other and finish.

Oh but wait their will still be .2 miles left. It hardly seems worth mentioning .2 miles but that will be for me. I am the daughter of a cardiac rehab patient, I am the mother of a CHD warrior and survivor, I am the friend to some of those mothers who left the hospital empty handed. I have traveled this exhausting journey and today I run for all of those that can't.

Happy #heartmonth #chdweek hugs to Madelynn, Jessica, Brandon, Evan, Amanda, and all the other #CampLUCK warriors,

God has big plans for her..............

Yesterday, I posted this picture on my social media sites. For homework due Friday Madelynn needed to build a time line about her life. I had no idea the power of these pictures when I printed them until we stated to build Madelynn's timeline.

Picture #1 - Madelynn's Birth - A few days after Madelynn's birth we brought her home to begin the adventure of raising 3 kids 4 and under. I sometimes still call it God's sick joke. This picture was from her first bath. Every mother on this planet has a picture just like it. However very few mother's treasure it like I do. It is the only picture I have of her perfect chest before she earned her zipper. If I ever lost this digital copy I would be crushed.

Picture #2 - Open Heart Surgery - 10 weeks almost to the day  I surrendered Madelynn to a man who promised me he would give her back. Over a 20 hour period I learned that there was no medical reason Madelynn should be alive, she will fight for every second of her life, a 7 hour surgery seems like days and the shock and awe that rushes over your body when you see your child for the first time after open heart surgery is nothing you will be prepared for. There are no words you can pen to paper that will properly equate to what you see. This picture is close to what I saw. Where I found the strength to not buckle my knees to the floor, only God can answer that.

Picture #3 - Baptism - Before I had ever heard of a CHD I had planned Madelynn's baptism. It was to be a grand family event and I was thrilled my parents, siblings and their families would be here for it. However, I postponed it. I called the church and explained what had happened. The very sweet lady on the other end offered to have the priest come to the hospital to baptize Madelynn. I quickly said No. I told my family I wanted her baptized like my other children.

What very few people know is that I was afraid to have her baptized at the hospital. I felt if I had her baptized I was giving permission for God to take her home with Him. I was not ok with that. When baptism day finally came she was six weeks away from her first birthday. As we were standing around in the hallway of the church it hit me. We had made it to a place where Madelynn was going to make it. She was still working out a few kinks but I felt like we made it. At that moment, tears just started rolling down my face and I could not make them stop. It was as if EVERY tear I held in for all of those months had permission to flow. It was an incredibly freeing moment.

Picture #4 - 1st Annual Camp LUCK Family Camp - Throughout our heart journey I have met some pretty stellar heart families. Some of their stories  made ours seem like standard operating procedure. We learned what our new normal was and made some amazing new friends. Camp LUCK (Lucky Unlimted Cardiac Kids) supports families like ours in lots of different ways (www.campluck.com). One of those adventures is to go the Camp Cherokee for the weekend as a family, live in a cabin, "unzip" from the chaos of the outside world and live in that moment right there. Madelynn has been to every one. This picture is her at the first one in 2010 at 21 months old. When I see this picture it gives me permission to exhale.

Picture #5 - First day of Kindergarten - I cried all the way to work that day. We had reached a milestone some days I thought were impossible. When I was making weekly visit to the pediatricians office, monthly visits to the pediatric cardiologist, monthly visits to the pediatric pulmunologist, weekly physical therapy, multiple ER visits kindergarten was the furthest thing from my mind. The peak of the mountain we were climbing was in view and I was finally go to see what was on the other side. We were lucky enough to reach a point that an unacceptable amount of heart warriors never see.

Picture #6 - 1st Soccer Game - Madelynn's Heart and Lung doctors both cleared her to play soccer. At different appointments they both said almost the same thing verbatim. The only way to know if she can do it is to let her try. Madelynn suffered a collapsed lung and paralysis in her diaphragm after her OHS. At her last x-ray her diaphragm still did not contracted completely as it should. But at her last breathing test she scored better than the average normal person. To see her in a soccer uniform, running with the boys, scoring goals my heart is overflowing. Not only did God and the doctors give her back to me it was done 10 fold.

Picture #7 and #8 - Remember when I told you we had reached the peak of the mountain and I wanted to see what was on the other side. This is the beginning of the other side. Dairy Queen had their Miracle Treat Day. My friend at the Hospital Foundation said tell me that you went and I will have prizes for the kids. So I emailed her a photo of Madelynn eating her blizzard. She was so thrilled she asked if they could take more pictures of Madelynn . One of those photos was to go with a small write up in in the Hospital Foundation Magazine. I asked for a few copies to share with my family. To my speechless astonishment she was put on the cover. I was so excited I was shaking.

Some time after that I was asked if that photo could be entered in the Dairy Queen Children's Miracle Network photo contest. She won!! She was on all the Dairy Queen handouts for the Children's Miracle Network for the second quarter of the year. These were the posters that were hung in all the stores across the country. Friends from all over sent us photos standing next to the photo of Madelynn. We were traveling back from DC and stopped at a truck stop that had a Dairy Queen attached. Low and Behold there was Madelynn right in the center aisle poster size. It was the first time I had seen one and an affirmation that we were on the other side.

For Madelynn to have to complete this assignment for CHD Awareness week was God's plan all along. It is just another reminder God has big plans for.

TTFN~

Hope, Normal and a little bit of Brilliant Silence

We are in the second week of Heart Month and the beginning of Congenital Heart Defect Awareness week. I could tell you more about our journey. Sometimes the journey stands still in a brilliant silence that can not be photographed, drawn or even described very well. But I am going to try.......

The last few years have been a whirlwind. My 12 year old daughter has shown she has an amazing heart for sports. She is quiet and observant, the next thing you know she pounces and you are speechless. You are in awe at the gift that suddenly rises to the top. She has been on the A and AB honor roll, she plays the clarinet, soccer and basketball. The doors that have been opened for her leaves me silenced on a weekly basis. I demand the most from her and she delivers.

Last Spring Kaitlynn was in the goalie box in one of her most challenging matches to date. She is one of the smallest goalies in the league. But at that moment when the ball is sailing into the box she caught it. For a few seconds, before the sidelines erupted into cheers, there was a brilliant silence.

Throughout this journey I have a son who is a warrior, with a gentle soul and will always defend the weak. On the days he frustrates me the most and I want to just light my hair on fire, he stops me dead in my tracks. He is honest, almost to a fault, and would give the shirt off of his back if I would let him. He has the most amazing talent in Math. The way his brain works he can give you the answer before most are done writing it down. About the time I want to give in he reminds me why I shouldn't.

This season in basketball my son has truly struggled. Sometimes it was almost painful to watch and sometimes it included tears. I really felt like this was the end of basketball for him this year. In the last regular season game, it was the first minutes of the game Jackson was standing outside the rainbow, received a quick pass and sailed the ball up and drained a 3. For those few seconds, brilliant silence. Then the cheers.

The biggest surprise of this journey we were catapulted into a world that included CHD, Coarctation of the Aorta, extended repair, holes in the heart, possible months in the hospital, magazine cover, poster child, CHD Awareness video, Featured story on Social Media, Fundraiser video the opportunities have left us in awe and sometimes dumbfounded. Some days and weeks have left us physically exhausted either because we are fighting for her life or we are giving back everything we can because we are winning the fight against CHD.

The best part about Madelynn's story is the hope we can share with other families. Let's be honest in the world of CHD's some days hope is the only thing to cling too. We long for a normal day. We would barter for one 24 hour period that did not include a single hint of a CHD. The other day we were having a NORMAL day. We were tired and Madelynn asked if she could snuggle with me. What parent would ever turn that away? As we were laying in our brilliant silence, I realized my hand was laying on Madelynn's chest and her heart was beating in my hand. At that moment my world stood eerily still. I didn't hear anything, see anything nothing matter in that amazing, breathless moment all I could feel was my daughters heart in my hand.

As the outside world came back into focus, I was reminded of God's perfect timing that put every single detail in just the right place to save her life. I am reminded more times than not by others' journey that she is here for a reason and I must walk through every open door. You just never know who is on the other side to share your spectacular silence with.

About the time I could become very comfortable in a normal life that does not include CHD, I am whisked through a door reminding me: Hope is your purpose. You were never created for normal.

As we celebrate Congenital Heart Defect Awareness Week (kind of an oxymoron), my HOPE is that you find a little bit of NORMAL and can celebrate your BRILLIANT SILENCE.

TTFN~

If we're honest

If we are honest......these are four very scary words.

If we're being honest I used to be angry and not just a little angry about Madelynn's journey. I had a boy and a girl and my life was exactly what I wanted, at least I thought so. Why did I need a third child? Why was it so important Madelynn be born??

If we're being honest my life was never close to being complete until Madelynn was born. The laughs, the utter joys, that gleaming smile, those big brown eyes. God has big plans for us and we have just scratched the surface of this journey. Every time I think we are just going to have an average family of five and Madelynn's history is a memory, I am reminded I need to continue to share our journey.

If we're being honest some of my most treasured friends are Heart Moms who have lived in the trenches with me. Other Heart Moms get it, they speak my language and in some cases no words need to be spoken. If I tell them Madelynn's heart check up is next week, nothing else needs to be explained. However, if I were speaking to my childhood friend I would have to tell her what happened, surgery, recovery, additional trips to the hospital and other specialists, therapy. It can be incredibly overwhelming and in some cases very off putting. This scenario is no ones fault but it makes life complicated. Some days I miss my old friends.

If we're being honest my life has done a complete 180. If you told me back in 1995 when I moved to Charlotte the events that would occur I would have tried to run away. However as part of God's plan everything was set perfectly in place. Every single person we needed to cross paths with was set in motion. There is no medical reason Madelynn should be alive today. But she is because of the beautifully orchestrated plan to bring her into this life. Sometimes processing it and accepting it can be overwhelming and brings me to tears.

If we're being honest not enough people know about Congenital Heart Defects (CHD).

If we're being honest too many children aren't making it to their first birthday because of CHD.

If we're being honest more research needs to be done to save these babies and thus more money needs to be available.

If we're being honest more children die from CHD every year than all childhood cancers combined.

I know everyday we were extremely fortunate that Madelynn's story started the way it did and she is still here with us. I have vowed not to waste it and will continue to share it.

TTFN~

Choices

Being the parent of a child with a Congenital Heart Defect is definitely not a club I would ever want to join. I have slept on hospital couches, I have fallen asleep to beeping machines, I have eaten Oreo's at 2 am because I could not sleep. I had to learn what a Coarctation of the Aorta with complications was. I learned in order to save my daughter's life I had to agree to the following:

-To stop my daughter's heart and hook her up to the heart lung machine
-Allow the surgeon to cut out a portion of her Aorta and splice the remaining parts back together
-Then hope her heart would restart when they were finished
-Did I mention that her heart was the size of a Walnut?
-Did I mention they had to break her rib cage to complete this procedure?

Once you join this "Club" you have to make choices and force your child to make choices that they do not understand or want. So they aren't really choices this is the problem and this is what the surgeon has to do so your child can live!

As our journey continued my child knew she was different and she assumed constant visits to doctors and specialists were common place. She even calls Levine Children's Hospital "Her Hospital". We know almost all the staff at the Pediatricians office by first name. One day her Cardiologist took time out of his busy schedule to watch her play soccer. This is certainly not the life I envisioned for my child.

If I were to share anything with other parents it would be to allow your children to make choices and give them their power back. They can't refuse to go to the cath lab, get a blood draw, lay perfectly still for an echo or refuse the doctor to do his job. But as the parent can give them other choices. What do you want to wear to the doctor appointment? Where do you want go after the appointment? What do you want to watch while the tech completes your echo? Most of these decisions mean nothing to most people. To a child who has to suffer through these procedures, those simple choices mean the world to them.

These decisions that consume a heart families everyday life mean nothing to those unaffected and unaware. Through the month of February I want to make you aware. Most unaffected will go about everyday life March 1st as if nothing has happened. For us Congenital Heart Defects make us aware March, April, May, June, July, August, September, October, November, December and January too. Simple put it never ends it is always there and we are always aware.

#areyouaware

TTFN~

I will not apologize......#areyouaware

Before October 2008 I had never heard of Congenital Heart Defects (CHD). I was raising the family next door and life was like any other American family with 2.5 kids. Then everything changed we became a statistic I had never heard of before, we were 1 in 100. Did you know every year 1 out every 100 babies born has a CHD? Did you know every year 10,000 babies are born with a CHD. Did you know more children die from CHD than all childhood cancers combined??

If you didn't know don't worry most people don't. But for me that is not ok. I do not accept that there is not enough money for research to save these babies. I do not accept any parent should have to bury their child from this disease. So I will share today, tomorrow and the day after that, the week, months and years after that. I want everyone to be aware about this disease. There is NO cure for this disease just surgeries to prolong life.

I will not apologize for sharing or over sharing what I know about CHD. I did not choose to be a member of this statistic but I am. My daughter did not choose to have open heart surgery to save her life but she did. She is one of the lucky ones to be winning her fight against CHD, but she is not cured.

February is Congenital Heart Defect Awareness Month and my hope is to make you aware. If you get annoyed because you feel like I am stuffing it down your throat I won't apologize for that. If it wasn't for someone becoming aware my daughter would have died in 2008 and I wouldn't have deserved that.

So #areyouaware??

TTFN~

Don't be afraid to "Pray the Scary Prayer.......

DON'T BE AFRAID TO PRAY THE SCARY PRAYER

Before CHD (Congenital Heart Defect) invaded our lives I don't even think I knew what a Scary Prayer was. Since our CHD diagnosis I would be happy to help pray the Scary Prayer with you or for you. I promise the Scary Prayer is nothing to be afraid of.

Several months back on one of my social media sites I saw the post, "Don't be afraid to pray the scary prayer"

It was one of those moments when I read the post it stopped me dead in my tracks. The thoughts that rushed through my mind were Jackson and the three times I released him to a surgeon, Madelynn's entire heart journey, visiting with families who are waiting for a heart for their CHD warrior, making memory boxes for CHD warriors that have earned their wings, recent events of CHD warriors fighting for their lives and sometimes losing all in about 30 seconds.

Not every one's scary prayer is the same. Some of my scary prayers were hoping my sisters twins would survive premature birth, my son would not have any complications to his three surgeries, praying daily that Madelynn would be strong enough to win her CHD battle, praying some of our CHD Warriors don't earn their wings. I can assure you that not all of my scary prayers were answered.

The importance of scary prayers is praying them out loud. Hearing yourself say it out loud helps make it real and will help you cope. To this day certain words or phrases make me cry. The realization of where we were and how far we have come can be overwhelming; almost breathtaking. Today as I stand on the other side of our journey, I remember praying for help we would make it there.

Don't forget that not all Scary Prayers are answered. Sometimes the lack of an answer is the answer. This was one of the hardest concepts for me to accept. But it is also harder to help others understand it. I encourage you to never give up and don't let fear control whether you pray your scary prayer. I will never stop praying my scary prayers.

TTFN~