Finding Joy in the Journey Part 2

Since we have returned from part 2 of our Spring Break I have been running a marathon but at a sprinters pace. I have finally had time to share about the journey.

Holy Thursday I waited for Phil to get home from work, packed up the van, letting Phil  sleep in the back and off to Nags Head we went. I won't lie I have been waiting for this trip for more than six months. My bucket list is not extravagant it consist of things I have always wanted to do but something always seemed to get in the way. Finding myself at the beach for sunrise Easter Sunday morning was near the top. When I told my mom about this adventure last year she thought it sounded like fun so she and my dad joined us.

However, I was not prepared for the events of the weekend. As an adult I have never traveled with my parents on a vacation. Since they recently moved away I was excited to see them. I prayed for this trip to be fun and asked God to make sure we made memories my children would remember forever. He did not disappoint.

Thursday afternoon and evening we walked the beach, found some dinner and planned the events for the next day. Friday morning I found my dad on the beach and we watched the sunrise. The silence of the rest of the world while the waves beat the sand and the world was getting ready to say Good Morning.

After breakfast we made our way to the Currituck Lighthouse. It is the only light house unpainted exposing the beautiful brick. We made our way up the 220 steps to see God's exquisite creations of land and sea. Because it was privately managed it was the only lighthouse on the coast open this time of year. Thanks to God's perfect timing I have these memories.

                          

When we came down from the lighthouse we explored the grounds. There was so much to see it was almost a sensory overload (we will be back to finish where we left off). I wandered down a path that led to the Currituck Sound. 

The path to the Currituck Sound

It was so quiet. I bet now it is much greener but a lot buggier.

The beginning of a Red Maple tree.

The Lighthouse from the Sound.

A large tree had tumbled over and the center of the root was exposed.

My little people sitting at the Sound.

Exiting the Sound.

In 2009 we received an invitation to Phil's brother Jason's wedding in Atlantic Beach at Fort Macon. Madelynn had only been 6 months post open heart surgery but the doctor gave us permission to travel to the wedding. For us it was like we were paroled from prison. I was beyond excited. On the way to the beach we stopped to give the kids a break. I snapped this picture. Little did I know how perfectly it described the joy we all felt to be able to leave home.

 The day after the wedding with way too many people piled into our van we went on adventure. We found our way to Cape Hatteras and Kitty Hawk. Sadly it would be the last trip we took with Phil's brother Jason. He passed away October 2012.

Katie 5, Jack 3, Madi 10 months 2009

Jack checking out the photographer. 2009

Katie and Jack hanging out the Wright Brothers. 2009

Flash forward to Good Friday 2017 we found ourselves at Kitty Hawk again. It was fun to explore the grounds and quietly bittersweet knowing Jason was gone. When my parents decided to come along it had never occurred to me they had never been to Kitty Hawk. As we walked and talked my dad would ask a question about the history and Big Kill Devil Hill. Sure enough we always found the answers. It was as if God had created His own little treasure hunt. We made new memories and took some familiar pictures again. We packed a lunch and found a picnic table at the bottom of Big Kill Devil Hill. It was a beautiful afternoon as long as you were in the sun.

The last time she was here she could not walk.
Proof God fulfilled His promise and let us keep her.

Eight years later, my cup runneth over.

The only place to take a picture of Grandpa at Kitty Hawk.

Kaitlynn and her shenanigans

Strangely enough this picture gives me peace to know God carried us through it.

Day three of Part 2 started out cold and gray. The sunrise was kind of Blah, We tried to go to Fort Raleigh but the rain kept us from fully exploring the site (another excuse to go back to the area at a later date).

The best part about the sunrise was that Jack and
Madi joined Grandpa on the beach.

The Madster keeping warm and watching the sunrise.

Fort Raleigh

Fort Raleigh

Fort Raleigh

When Fort Raleigh was a rain out we headed to Bodie Island Lighthouse. Jackson had learned all about the history of this light house in school and was so excited to discover we would be staying near it this trip. Sadly this is when we learned it was managed by the state park system and it could not be climbed until the first week and May.

So what do you do when you can't climb the lighthouse? Get creative and entertain yourself.

Grandpa and his creative genius + kids who were bored =
Photography Shenanigans Holding the lighthouse in the
palm of your hand.

More of his photographic genius.

Chilly and damp we headed back to Nags Head from Bodie Island to find some lunch. While we were eating the sky was clearing and the day was warming up. Something else on my bucket list was sunset at Jockey Ridge State Park. The largest sand dunes on the Eastern seaboard. I was told was a must see and it did not disappoint. As God's perfect timing continued there was a kite festival at Jockey Ridge and the conditions were perfect for flying a kite.

Phil the master kite builder. The anticipation was killing them.

Waiting to let Ariel take her first flight.

Grandpa and Jack watching his Ninja ride the wind currents.

Katie taking Ariel for a spin.

Phil giving it a try. The bird was very difficult to fly.

It did much better when Madi got a hold of it,

The undisturbed sand when the wind currents sail across.

Waiting for sunset after an afternoon of kite flying.

You can't tell from this picture but the sun soon was lost behind the clouds and
a perfect sunset was not to be had. Standing atop the sand dunes as the sun said
farewell was worth it and we will do it again.

The final adventure for our trip to Nags Head was Kitty Hawk Pier for Easter sunrise service. At a very ungodly hour we arose and dressed in our resurrection white outfits and quietly trekked our way to the pier. I am sure the silence was due to no one being fully conscience yet. My research showed the service started at 6:15 and sunrise was set for 6:29. Other than that I had no idea what to expect. A giant barn like building was constructed where the land met the ocean  before you walked out on the pier. It was slapped full of tourist and residents.

The service had just started when we walked in to standing room only. Looking at the program and knowing the time I thought for sure we would miss sunrise, my whole point for wanting to go. I started to get upset. My inner voice fought back and reminded me what today was really about and to focus on the purpose of the morning. As we were singing the last song the Pastor flew open the backdoor to the building that led the pier and God's timing was perfect. The morning sun filled the room and you were drawn to morning sun. It was as if God surrounded you with a hug and covered you with the warmth of the sun like your had never felt before.

I discovered a few minutes later had we been on the pier right at sunrise it was covered by the morning clouds and as we walked out to be swallowed by the sun it had just risen above the clouds. It was exactly the way we needed to experience it.

Eater Sunday 2017

Easter Sunday 2017 compliments of my Dad.

My take away from this trip was God showed me how to always find Joy in the Journey. In some cases he brought us full circle and reminded us He is always there. Other than my photographs, I brought some glass bottles with cork lids and filled them with sand; one from Kitty Hawk, one from Jockey Ridge and one from Nags Head for souvenirs. Since my parents moved back to Ohio and my job does not allow me to travel too far for Christmas my goal is to try and spend Easter with my parents. It will be hard to top this trip unless next year is slightly warmer. Right Mom!?

Finding Joy in the Journey. Part 1

Even though Phil and I had to work some, the kids Spring break was packed full of fun. Katie had a soccer game the last day of school before break and we picked up Nana Patti at the airport. The kids were thrilled and a visit with Nana Patti is always filled with laughs. The first full day of their break we headed out to Chimney Rock in the North Carolina Mountains.

The last time I remember going the kids had not been born. But I was wrong. One beautiful day in October of 2008 we decided to go apple picking with my parents. We had packed a lunch and found ourselves at the bottom of Chimney Rock along a beautiful creek ready to eat. There were picnic tables along the creek bed. We ate lunch and took in the sights and sounds of the bright Carolina blue sky, the sun shinning, listening to the water flow.....nothing else really mattered. In an older post I said it was the last time my life made sense.

We had no idea that our life would be forever changed by Madelynn's heart defect diagnosis and her incredible journey. I have made peace with the fact that my life changed forever. I don't remember much of life before her diagnosis. What I was not prepared for was when I realized exactly where we were when we crossed the bridge to make the climb up the mountain to Chimney Rock. 

EVERY SINGLE DETAIL about my life flashed like a movie and stopped dead like the movie was stuck to the day we were last here. It was almost like someone knocked the wind out of me.Then everything about Madelynn's journey started the movie back up again as we made the climb up the mountain to park our car. That day we walked somewhere close to 10,000 steps. Yes, my CHD Warrior walked close to 10,000 steps without complaint. I savored every moment of that day and just watched in awe as Madelynn tackled the mountain.

I didn't realize it at the time but as we were getting ready for Easter Sunday, God fulfilled a promise. He showed me that He did not leave my side through this entire journey. So many times I felt alone and carrying the world on my shoulders, but that day at Chimney Rock I was reminded my new normal wasn't quite so bad and He always had a plan for us. I don't want to call it closure because Madelynn's journey will never be over. But we have found utter JOY in the journey.

Madelynn was only about 9 weeks old and my mother was holding her.
I had Jackson and Kaitlynn pose for this picture at the bottom of Chimney
Rock after lunch. October 2008

Kaitlynn and Jackson at the bottom of Chimney Rock  April 2017

My whole world. Chimney Rock April 2017

We had a great day. Chimney Rock 2017

I love them to pieces. Chimney Rock 2017

One of my favorite pictures of the day. Chimney Rock 2017

A fun day. Chimney Rock 2017

I love them even when they make me crazy.
Chimney Rock 2017

Married 18 years this year. Chimney Rock 2017

The Phil, myself and the kids had a wonderful visit with Nana Patti for the first part of Spring Break. Thank you for coming to visit and always helping us find Joy in the Journey.

TTFN~

First half of opening weekend......

When soccer season ended last fall the kids never truly stopped training. Kaitlynn and Jackson tried out for the Olympic Developmental Program for soccer. After the third round Kaitlynn was cut. Jackson on the other hand is still part of the program. He has his next training session in a week. Friday began opening weekend of the Spring soccer season and so far things a moving in a positive direction.

Friday night was a bitter sweet victory. Kaitlynn is a starter for her middle school team. Her opponent for the home opener included players she used to be on the same team with, During the first half one of Kaitlynn's teammates slide tackled her former teammate and she was badly injured. Kaitlynn's friend will be ok but she is off the pitch for a few weeks. We were excited for the 3-0 win but more worried for her friend.

It was very clear she was pretty nervous.

It was clear she found her feet and settled into the game in stadium.

A huge shout out to our soccer families who helped us out this weekend. Every six weeks Phil has to work the weekend. Working twelve days straight and thirds is a little much for Phil so I am a single mom for a few days. I could not get everyone where they needed to be this morning because Phil was still at work.  Thank You!!

Jackson was up first this morning. His team did not fair too well and lost but he did manage to score. I felt bad because he is battling a head cold and was not 100%. he has spent the rest of the day just recovering. He will play again tomorrow afternoon. Hoping for a better result Sunday.

He really gave a great effort today.

He managed to get around all of those players.

And Score!!

My favorite part about watching Jackson play is listening to the opposing team's coach yelling at his team, "Watch out for #8! Get on #8!" Yes that is Jackson. I can't wait until he is 100% to really see what he can bring to the team.

Due to a scheduling conflict and a coach decision Kaitlynn left the team she was on in the Fall and rejoined a former team because it fit her school team and schedule better. Her season opener for that team was this afternoon and man was it a good one. I was stunned to see Kaitlynn on the field when I walked up because she was wearing the captain arm band. I did not know that decision had been made. She showed stellar leadership today by scoring all four of her teams goals in the 4-0 win. It was amazing.

She has been working on her throw ins.

She had great ball control today!

Goal 4 of 4!!

Jackson still has a game tomorrow and Kaitlynn has another home game Monday night. If you are not in my soccer circle I will see you some time in late May early June. I will post as often as I can about the season as we go/

TTFN~

The right path to be a good man......

For the last few months my 11 year old son has been begging me to go to the movies with his friends. I have had several ways to ixnay this but not be the bad guy. Then he came to me and asked if he and his best friend from preschool could go to the movies. I conceded but only if Daddy could go too. So Jackson and his best friend and Daddy headed off to the movies. I felt I had found a happy medium.

Sunday Jackson asked me if he could go to the movies with his friend Lanie. I told him I wasn't saying No (even though I was ready to let those words roll right out) but, I needed to ask his Daddy. Sometime between that conversation and this morning Jackson completely cleaned his room. I was speechless. I also realized this was important to him because I did not have to ask. So this morning Phil and I spoke about it. Yes I am fully aware this is his little girlfriend. I asked who else was going? I told him unless it was a group of people four or more he could not go. So Lanie, her friend, and 18 year old sister all went to see the Batman Lego Movie. They were chauffeured by Lanie's mom.

Before we left for the movies I sat Jackson down and told him he could not leave the inside of the movie theater and a serious safety talk. Then we discussed, how he needed to be on his best behavior, hold the door open for Lanie and always let her go first, be a gentleman. He started grinning and turned very bashful. It was very cute.

We showed up and the theater and the girls poured out of the other mini van and then there was Jackson. As they walked up to get tickets, my heart just melted as my sweet boy was so happy to see Lanie. When they all disappeared into the theater doors, Lanie's mom walked up to my van and introduced herself. We chatted for a few minutes and I quickly discovered her mom and I felt the same way about this "date".

At the designated time Jackson gave me to come and pick him up, I texted and told him I was on my way. He knew the rules and texted back for permission to go down to the frozen yogurt shop. I sat in the parking lot and watched him walk down and sit outside at a table with all the girls. He forgot to open the door for her at the yogurt shop so we still have work to do. However, I don't many 11 year old boys who have the confidence to join a group of giddy middle school girls and hold their own.

I know he had a good time because he came home sat outside and facetimed with her. He had a chance to chat with her without the entourage. He was already trying to make plans for the next acceptable meeting place.

There are truly no words to tell you how overwhelming this is as his mom. So many things I want him to do and say, habits I want him to build to treat and respect the females in his life. My only saving grace in another week or so he will have soccer training/practice for both his local team and OPD; not including keeping his grades up at school. I know this is some type of right of passage in middle school but God help me direct him down the right path to be a good man.

TTFN~

Tears

Valentine's Day.......The day my grandmother (I never met) was born.....The day I got engaged.......all good things to celebrate. After 2008 Valentine's Day took on a whole new meaning. It is the big finale to CHD Awareness Week. It is National Donor Day for organ donation. Celebrations that meant nothing to me until a doctor I had never met told me my child was born with a congenital heart defect, there was no medical reason that she was alive and that they were going to stop her heart repair it and restart it to save her life.

About ten weeks after Madelynn's life saving surgery I was driving home from a support group meeting for heart families and I just cried. I was completely alone in the car, I could barely see my eyes were overflowing. I had had enough. I couldn't take another hit. Madelynn had been in and out of the hospital 4 times in those 10 weeks. She had a collapsed lung, strep pneumonia, she wasn't eating and lost so much weight she was almost admitted a 5th time for failure to thrive. When I reach a point of stress capacity I cry. This was my CHD rock bottom the darkest place I have ever been.

Finally someone found me, heard my cry for help and took control. Thank you Dr. Sliz (Madeynn's cardiologist)!! With his help, weekly monitoring from the pediatrician, and a lovely nutritionist Madelynn was on her way back. In my mind back to the healthy chubby baby she once was. But that never happened. Every time Madelynn even caught a cold it was five steps backwards for us. Even today Madelynn will be nine this year and weighed close to 48 pounds. Last week she caught a stomach bug, she lost 3.5 pounds and it took almost a week for her to gain her strength back just to get through the day.

Madelynn's heart is repaired not cured. It is filled with scar tissue from where part of her aorta was removed and spliced back together and two holes in her heart were closed. She has chest tube scars and jumper cable scars. Madelynn's heart was so small when her surgery was performed wires were inserted to act as paddles in case they needed to restart her heart again. The other end of the wires would have a battery attached if needed. This was the reality of being a family with a CHD warrior in it.

There have been other days that the stress has been become so great I just sat and cried. Appointment days when I hoped the doctor would tell me we were further along in her recovery and we weren't. Days I failed my heart healthy children because my heart warrior consumed every ounce of energy and time. I lost friends because they could not figure out how to just be my friend. I didn't need them to know how to walk this journey with me I just needed them willing to try. I have shed enough tears for three life times.

I used to think crying was a sign of weakness and I feel sorry for anyone who still believes that. I could never truly put into words the importance of crying and what an amazing source of freedom it is. A few weeks ago a new song was released called Tears by Matt Hammitt. Mr. Hammitt is a dad of a CHD warrior. I have been following his story since his son was born. He took his amazing musical gift and turned it into prayers and love songs to his son and their journey. Attached is the lyric video.

So today as we celebrate my grandmother's birthday in heaven, the anniversary of telling Phil I would marry him, the opportunity to bring awareness to Congenital Heart Defects and Organ donation I would also like to remind you crying is a great stress reliever. It is a great healing rain.

TTFN~

True reality

February is heart month. For this family it is a journey like no other. I had all of these grand plans of things I wanted to do to spread awareness. I wanted to give those unaware a tiny little peek into the life of a heart family. I watched videos started creating jpeg's with some of my design skills I have recently discovered. I wanted to bring to the forefront some true realities of what it is like to be a heart family.

Four days into heart month my heart warrior started vomiting. For more than 24 hours she vomited. In her sleep she gagged and choked. Even when there was nothing left to vomit she couldn't stop. She didn't eat for more than 24 hours. I called the ask a nurse line to see if I could take her to the Urgent Care or if this required an emergency room visit. My mother's intuition already knew but the nurse confirmed it was time for the emergency room.

Having been a frequent flier at the emergency room, I packed a few necessities and away we went. From my house to the emergency room is like the green mile. It brings my PTSD out. Every emotion across the board shows it's ugly head. It takes the entire ride to get myself in true heart mom mode and keep myself collected. I can not let "What if I failed her again" ever enter the room.

Huge Heart Hug THANK YOUS to my mom, my sister, Justine, my crazy soccer moms (Mama D, Ms. Diane, Suzy), Anne, Debbie and Connie. Not even knowing it, you helped keep my sanity and pass the time while we waited. Thank you for all the love from social media!!

But once I entered the emergency room the world stopped. I forgot it was Super Bowl Sunday. Nothing in the outside world truly mattered except my friends and my family. Time ticks away but I am just oblivious to it. I live in the moment. I learn from the experience so I can make better decisions next time.

During this visit I discovered that I have done a great job teaching my warrior to love and want to drink water. Sounds like a stupid accomplishment to some. However, Madelynn was not as dehydrated as originally suspected and did not require an IV. Because they were able to get the vomiting to stop she immediately wanted to drink. Before we left the emergency room she had water and Gatorade and kept it down. To be safe, they checked her heart and all looked good. Sometime after midnight we arrived back home. I discovered the true definition of exhausted.

But now the real journey for Madelynn was beginning, Think about your average 8.5 year old girl. According to the CDC website, she should weigh about 60 lbs and be about 4ft 5in tall. Madelynn currently weighs 45 lbs and is 4 ft 2in tall. She is in the less than 5th percentile for her weight. She lost 3 lbs in just over 24 hours. Pounds she could not afford to lose.

We have started to reintegrate ourselves back to reality. Madelynn back to school and myself back to work. Her body is getting stronger and her want for food is growing but it was a major 5 steps backwards. Instead of finishing the marathon we were on we have to start over. Frustrated, discouraged, failed describe how I feel right now. I have been battling this food issue since two weeks after her open heart surgery in 2008. You would think I would be used to it by now but I am most definitely not.

So the true realities of congenital heart defects is that it sucks. Not even bringing into play that my child's heart had to be stopped and pray it would restart after a seven hour surgery, the day to day life of finding new normal is some days more than I can bare. But I do. I handle it all, I manage it all and I move on. Just like this week's event I will find a new starting point and start my race all over again.

From the outside we seem like the average family. On the inside we fight a battle daily that I would never choose nor wish on my worst enemy. Lucky for me I am surrounded by family and the craziest and best of friends to help keep me up and moving forward.

#adayinthelifeofaheartfamily

TTFN~
Chelsea

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~