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~