Madelynn's Heart Birthday.....

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

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

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

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

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

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

Madi on Papa Dave's tractor

Madi and Cash running the fields.

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

KT and Daddy fishing.

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

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

One happy girl.....

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

Papa Dave's daily morning view.

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

TTFN~
Mama

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

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

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

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

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

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

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

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

TTFN~

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

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

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

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

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

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

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

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

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

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

Family Camp 2010 First Luau Lunch

She had no idea what to think.

Pure Joy living in the moment with Daddy

Camp is like her second home.

Not afraid of the water or a boat

She loves the archery range.

Her favorite thing to do.

Her favorite camp volunteer.

One year even Aunt Jacquie and Uncle Tony came along.

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

TTFN~


 

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!?