When you realize you are finding balance........through a soccer coach.

Since the end of Heart Month life has been one wild ride. Kaitlynn and Jackson ended basketball and all three jumped right into soccer. Phil is coaching both Madelynn's and Jackson's teams. He was was only going to coach Jackson's team. However the league was short coaches. Phil and I agreed he would take on the coaching jobs and I would help with all the behind the scenes things setting up group emails, making team rosters, snack lists and anything else he needed help with.

We have had lots of rained out practices and games. However the season is finally underway. Madelynn's team is undefeated 3-1 (she scored one goal) and 6-1 (she scored 3 goals). She will play again tomorrow if the fields aren't too wet. Jackson's team has played one game, which ended in a 4-4 tie (Jackson scored 3 goals). It has been great to watch.

Kaitlynn is on a team , The Lady Hurricanes, with girls she has played with for three seasons including the same coach. I know we aren't supposed to pick favorites but I LOVE to watch her team play the most. When these girls are on they can not be beat. Sadly their first game was not their best day ( I am being nice) and they lost 3-1. The next day the girls played again and it was like the real team showed up and they won 2-1. However that is not the real story here.

Parents are not allowed on the field at anytime unless the ref or coach calls them due to injury. Katilynn's team was winning 2-0 in her last game. She was in the goalie box; the ball was coming at her and she tried to land on and smother it. However, the ball popped out and the opposing team scored. But I noticed Kaitlynn did not get up. Knowing I couldn't enter the field I screamed the coaches name. When he looked at me I pointed to Kaitlynn laying on the ground.

As the coach ran to her she started to get up. When the coach finally reached her he said something to her and kissed her on the forehead. It made me release a sigh of relief. She was limping but ok. I could not see from my vantage point but in trying to win the ball and stop the score she was cleated in the thigh. It left a pretty nasty bruise. She was pulled from the game and when she was ready coach put her back in (about 5 minutes later). She is tough as nails and a fighter.

Kaitlynn has become this way because we taught her to fight for what she wants and she has a stellar coach. He can bring out the best in these girls, I have seen it. From Kaitlynn's point of view he is tall, broad shoulders and initially kind of scary. To know him he is a kind and gentle souled man. He treats these girls like they are an extension of his own family. I don't always agree with the decisions he makes but I only have the parents perspective from the other side of the field.

Kaitlynn asked me if she could play goalie. I told her it was not my decision and he needed to ask the coach. To see her be brave and stand up to the coach and ask if she could play goalie was very sweet. He stood their looking her in the eye and listened to her ask to play goalie. I don't know what was said other than if it was something she really wanted it required coming to every practice early for goalie training. She hasn't missed it yet. She is one of the shortest on the team but yet she plays goalie for the second half of almost every game.

I am not going to lie I do not believe Kaitlynn is goalie material. If for no other reason than the height barrier. But she also is a great forward and mid-fielder. But to see her in the goalie box fighting for every ball she LOVES it and she is good at. I believe Kaitlynn's coach sees the big picture. Whenever soccer ends for Kaitlynn whether that be next year or 10 years from now she will have had a coach that let her play the game with no regrets. She has played every positions. She has learned you both win and lose as a team. She knows that even at the end of her worst loss, she will have learned something.

Over the next five days we will need to attend 6 six games (2 for each child). Because of Kaitlynn's coach, I have become a crazy soccer mom, made some great friends and learned that life is becoming more balanced and not totally consumed with Madelynn's heart condition. It makes us all better people.

7 days a week, 365 days a year.....

Today ends Heart Month! For families with children fighting heart defects the journey never ends. There is no remission, there is NO CURE. We are reminded 365 days a year and not 28. We find the strength to surrender our warriors to a surgeon knowing no matter what the result our lives will never be the same after.

The other day I came across a picture that every time I see it I stop. This picture represents the last time my life made sense. It is the last time I remember what my "normal" life used to be. When I see this picture I had no idea what the inside of a children's hospital looked like. I didn't know most of my current friends. I didn't even know what a CHD was. Life changed forever.

Would I choose this life? NO! Do I regret it? NO!

Because of Madelynn's CHD, I have a tight knit group of heart moms that are worth their weight in gold. These women understand our journey. There are certain things that I do not have to explain why they just know. They make the hard blows we take about our warriors a little softer. I am truly indebted to them.

Because of Madelynn's CHD, I understand parents of chronically ill children much better. I appreciate every good day and savor every ray of sunshine. Parents don't necessarily want you to fix everything sometimes they need a sounding board to just vent. If they don't let it out they can't move on or realize what they need to do next.

Because of Madelynn's CHD, I have learned to pray more, accept whatever decision the Lord has handed down and most importantly make a conscience effort to understand why this had to happen. What did I need to learn from it? How is this going to make me a better person?

Don't get me wrong none of these sound like very glamorous jobs. They are not easy tasks. Some days I just don't want to do it. But what if I didn't? What if I stopped following  and praying for heart families. What if one day God laid it on my heart to reach out to a family and I didn't do it? What the world end? Probably not.....But I also neglected to give hope to a family struggling. I am not sure I could live with that.

We don't just need support and cheerleaders during the month of February. We need prayer warriors, and friendly hellos, hugs when you see us and mean it when you ask how we are. The is a very real experience all year long and it almost never an easy one.

Thank you for all of those who have always supported us and our journey. Thank you for just calling to say, "Hi". Thank you for rushing to the hospital in our moment of crisis. Thank you for the moms shopping days and dinners. Thank you for even just for a little while making life seem "Normal", whatever that is anymore.

TTFN~

Happy Heart Month!

CHD Week - Day Eight - Tribute to my Warrior

Since becoming a Heart Warrior Madelynn has been on a magazine cover

She was even one of the featured children on the inside of the magazine.

She became the poster child for the second quarter for Dairy Queen's involvement with the Children's Miracle Network last year all over the US.

She is helping spread awareness with the 335 Heart Foundation for children born with Congenital Heart Defects. Click the video to learn more and see Madelynn.

She was one of the youngest Heart Warriors to attend the inaugural year of Camp LUCK Family Camp in 2010. This May will be her 6th year attending.

www.CampLUCK.com

\

It became a game that she would run away and Daddy would chase her (2010).

She was so tiny but had so much fun (2010).

She was ready for the Hawaiian Luau Lunch (2010).

Camp LUCK Family Camp 2014

She was even entered to win the ROCK YOUR SCAR contest with Mended Little Hearts (National).

However, none of these events is who she is. Traditionally, she is just a 6.5 year old little girl trying to keep up with school. She struggles daily with fine motor skills to be able to write. Because of her miniature stature she takes two or three steps for every one of mine. Her daily routine includes school, homework and soccer in the fall and spring. Except for the curiosity of why an almost 7 year old is so tiny, you would never know there is anything wrong.

We try to keep her life as normal as possible when we can. The opportunities we have been afforded to help spread awareness for CHD's, we will jump at the chance every day of the week and twice on Sunday. If the research and surgeries had not been done prior to hers, she would not be here today.

She is the reason I will get up at 6am go run a 5K for Cardiac rehab, race back out to the country to watch my other children play in a basketball tournament all while my mind is always wondering how else we can spread the word and help these heart warriors. I have seen where a hundred times over where parents will say they did not ask to be a member of this group or part of the growing statistic of 1 in 100 children is born with a CHD EVERY YEAR.

But we are a part of this statistic and we will do everything thing we can to spread awareness to raise the funds so that fewer heart warriors become heart angles and earn their wings. We love our heart families and wouldn't be who we are with out them.

Thank you for sharing our journey with us this week.

Happy Valentine's Day and Heart Week!!

TTFN~

CHD Week - Day Seven - Heart Dad

Madelynn's Dad is Amazing

He loves to just be a kid with his kids

Madelynn's Dad loves me beyond infinity

Madelynn's journey  has made wedded bliss challenging.
18 years together and I wouldn't want to take this journey
with anyone else.

Madelynn's Dad is a warrior of a different kind

This is his motto in everything he does everyday.

When Phil and I were given Madelynn's diagnosis we were stunned. The first thing we did was hug each other. He knew I would not leave the hospital and he went into a mode I had never seen. He left Madelynn and I at the hospital went and settled everything with our other two children. When he came back he was truly present in those hours before her surgery. Nothing else mattered, NOTHING.

Sharing cheerios

He was there for every scary intense moment and remembers it like it was yesterday. After a few days, reality set in. As much as he wanted to be with us at the hospital he had to go to work. If for nothing else to maintain his sanity. However, the medical bills were not going to pay themselves and we had A LOT of them coming. This is what he could do.

He worked his butt off. But when he walked through the door only his kids and I mattered.

Spring 2009

He could not fix Madelynn, the doctors needed to do that. But he could make sure Madelynn had everything she needed for the best life possible. At the time we had no idea what that would be. I had to take months off to care for her including therapy, specialists, weight checks, we met almost every specialist under the sun. During this time, we never missed a meal, or had a utility shut off; God literally threw work his way to make sure we had what we needed. I won't lie it was tricky to figure it all out and dropping payments off the day they were due happened often. But we made it.

Sometimes to save money I would cut the boys hair.

One of the funniest stories I can tell about this time......He had not seen Madelynn for a day or two. He was working and coordinating child care for our other two children. He only had about two hours. He came by the hospital to see her in his plumbing truck. Knowing full well when I saw him he was driving it I asked him where did he park it.(Anyone who has been in the hospital parking garage knows what I am talking about). He grinned and said the hospital valet parked it for him. I am just imagining one of the guest services staff in their bow tie and vest driving the plumbing truck. More importantly they understood the need for Daddy to see his little girl and took care of it.

Phil is always involved with the kids lives, not just Madelynn's.

Picking out pumpkins with Peanut October 2009.

He has helped coach Jackson's basketball team for three years.

His favorite thing to do was to put them to bed. It usually meant he fell asleep too.

However my favorite story to tell you about Phil is the kids hats. When they were born there is a picture with each of them wearing the little pink and blue striped hat. It was recommended that he take the hat home for the pets to smell so they knew a baby was coming. We wanted to make sure they were already familiar with the child. What I could not fathom is that the hat would never leave his pocket. If you ever see Phil in public ask him to see what is in his pocket. He will pull out the three hats from when each of the children were born. He never leaves the house without them.

I took this picture in 2008. You can tell by how clean they are whose they are.
One day the kids will have this story to remember forever.

I don't know what Heart Dads talk about. I can't tell you how they process raising a CHD Warrior. What I do know is most men are fixers. If something is broke they fix it. Having a child born with a broken heart is traditionally beyond their scope of repair. What I do know is he never gave up on Madelynn or us. For every intense, scary, raging moment he was there and fought everyday with me. I would have never made it this far in our journey without him. He is probably the reason Madelynn had so much fight in her.

Daddy just got home from work. Can you tell how I rate?

I love my Heart Dad Warrior probably as much as she does.

Happy CHD Week!

TTFN~

CHD Week - Day Six - Heart Mom

This CHD project I have been posting about for the last five days has been easy until now. I found it on Facebook and it was just supposed to be a picture that represents each of the titles for each day. I decided to take it further and actually post about it. Now that I actually have to talk about my personal experience it is a little hard to do.

Being a Mom is hard. Being a Heart Mom is such a daunting task. I was thrust into a world I didn't even know existed until October 2008. I have to take my day to day mom skills and retro-fit them to handle being a heart mom instead. You quickly learn about pulse ox, blood pressures, blood flow, chambers, valves, not exactly the words I thought would ever be a part of every day vocabulary.

Not to mention all the emotions that come to the surface and you have no idea why. I know they are their because I have lived them. For any Mom who receives life changing news about a child there is a time of grieving. Yes, I said Grieving. In order to take on the marching orders set before you with your child's diagnosis, letting go of the dreams you had for a heart healthy child and accepting the challenge in front of you is very key.

You can be angry, sad or in denial of your child's diagnosis. You can cry so many tears you feel like you have none left to cry. You can be angry; angry at God, yourself or the world. You can barter with a change in your life to make all of this not be true. But facts are facts and they are my child has a CHD. I need to accept this and move forward. Even when you think you have moved on from the stages of grieving sometimes they come back.

Sometimes they come back in the form of PTSD. I know that sounds strange to say but it is true. Living a truly traumatic event and then weeks, months or years later you find yourself standing in the that same room, smelling a familiar smell or seeing an old picture from that very dramatic day it can stop you cold.

For me it was a room. The first CVICU room Madelynn was in after surgery. It was small and a very serious room, especially for the first 24 hours. I remember being in shock.  I didn't know where to stand, what to say; she just lay there so lifeless. There is nothing in this world that will ever prepare you for the first time you see your child after open heart surgery. The dried blood, betadyne stains, the tubes, wires, the beeping and machines. If there was any denial before this moment it made everything very, very real.

Three years later I was walking through that floor of the hospital visiting another heart family. The very serious rooms are behind the staff work station, a set of swing doors and a sliding door. At the exact moment I walked by the swinging door was propped open, the sliding door was open and the sun was beaming beautiful rays of sunshine through that room and it was lit up like Christmas Morning. It stopped me dead in the middle of the hallway and took my breath away.

I was overwhelmed, every day of our heart journey flashed in my mind in a matter of seconds. The Peace and Joy I felt of God's promise of saving Madelynn's life was uncanny. I started crying and could not stop. I walked out of the hospital with tears streaming down my face. To this day, I can not tell you why I started crying. All the days when I was in the thick of it and could not cry or I had to remain strong, I did not have to remain strong that day. I was going home to hug my babies.




A picture of the sun rising in Madelynn's room the morning after surgery.

Having lived all of this, most days when you see me I will be smiling and laughing. Not because that part of the journey didn't matter but I survived it. When I tell part of Madelynn's story, certain words or phrases cause me to choke up but I can tell you her story joyfully. Her story is one of hope and promise, there can be happiness on the other side of this treacherous journey.

I realize not every heart mom has a journey like mine. I know these warriors fight so hard and some earn angel wings instead of a ride home with mom. There is a special place both in life and heaven for these mom's. Knowing how close I came to being one, I hold a special place in my heart for them and pray for them all the time. I admire them daily for never giving up.

Heart Mom's are strong, courageous, unwavering, amazing women who never stop fighting. I never asked to be one of them but I am proud to stand beside them.

TTFN~

CHD Week - Day Five - New Life

For day 5 of CHD week, the title was NEW LIFE. We were given an incredible chance at new life for Madelynn. Something Phil and I are incredibly grateful for. There are certain photographs that I just have to see them and I can tell you everything; the month and year, how I felt in that moment, how the air smelled, exactly where we were, absolutely everything. They are powerful memories that changed my life forever.



The day after Open Heart Surgery to correct her CHD. She was 10 weeks old, October 2008

 

The day she was released from the hospital the 2nd time, December 2008.
 

Enjoying fresh air, finally on the road to recovery, January 2009.

These next three pictures are pure simple JOY!!
 

The freedom to travel out of the region for the first time.

Freedom to stick her toes in the sand and the ocean for the first time, May 2009.

This picture ALWAYS makes me smile, August 2010

A lost but found photo I just LOVE, January 2011



Every time I see this photo I am grateful she is living life to the fullest, June 2014.

 

Her first roller coaster, June 2014.
If you look really close you can see the top of her zipper scare.

Being a CHD family we are added to a statistic we never asked to be a part of. We had to make a new normal and figure out what works for us. Even families who have the same CHD as our Madelynn, their journey is different but the same. Our story is one of hope and we are happy to share.

We share to help those families recently diagnosed.
We share to remind those families everything is worth fighting for.
We share to show families they can have new life too.

But......

We also share to bring awareness to what can be a horrible experience.
We also share because there is never enough funding for proper research for CHD's.
We also share because every 1 in 100 babies is born with a CHD.
We also share because one day we hope all babies born with a CHD can be saved.

Madelynn is 1 in 100.

TTFN~


CHD Week - Day Four - Realization

When I decided to take on this project for Congenital Heart Defect Awareness Week I knew this post would be the hardest to write. I know when my moment of realization was and it wasn't pretty and I was completely alone.

Phil and I were told Madelynn's heart was damaged on a Sunday afternoon by an urgent care doctor who found it accidentally. Two days later Madelynn's pediatrician said he would make the appointment with a pediatric cardiologist. There was no real rush because Madelynn did not display any symptoms for her eventual diagnosis.

I had no idea what to do with any of that information.

So for 16 days I privately researched what little details I could figure it. Other than Phil we did not tell anyone. At some point during this time I sent out an email to immediate family telling them what little we knew. I did not want to talk to anyone. Because of the shock of the situation and I simply did not have the energy to rehash what had happened thus far again and again. It simply wasn't in me.

I am sure this sounds rather selfish but she is our daughter and our day to day lives being effected. I had so little control over what was about to happen to us, I needed to maintain our daily living with our children as long as possible.

As soon as we were told Madelynn's diagnosis, surgery expectations and after surgery prognosis, the cardiologist had some preparations to make and left Phil and I in the room with Madelynn. I told Phil I needed to call work. He kind of angrily looked at me and asked why. I told him I don't think I can tell this story more than once without crying. After I took care of business I could break down. But that never really happened. I was always having to keep it together.

The next day when I handed her over to the surgeon I thought I would break down then. Or when I saw her for the first time after surgery or the day her lung collapsed and we fell backward about 10 steps but it never happened. Not even when Phil and I finished telling our mothers and hugged each other. We just packed it all in and slowly started this journey.

About a week after Madelynn's surgery we were invited to a support group meeting at the hospital. We met several other families who had children with Congenital Heart Defects (CHD's). It was nice to know we weren't alone. The next month when this group was to meet again Madelynn was in the hospital again. Only this time the support group was meeting off the hospital campus so we missed that meeting.

Two months after Madelynn's surgery I had the opportunity to attend another one of these support group meetings. This time they had a guest speaker. I honestly can not tell you what the person spoke about or who they were. What I can tell you is I was at the bottom of the barrel. Madelynn had been in an out of the hospital, wasn't eating, she was barely gaining weight, every detail of this fight to help her survive and I was failing. When I walked out of the meeting, whatever the person said made me cry. I cried the whole 45 min ride home.

I had never just let go, accept what had happened to her and how it happened to her. I did not really allow my self to feel anger or sadness to feel anything really. That night I felt and relived every emotion completely alone. I cried harder than I had ever had in my life.

That night I accepted that we were a CHD family. I accepted that my plan for this life completely changed. I accepted the fact that I had no idea what tomorrow would bring. I accepted that I would fight until my very last breath for Madelynn to have every opportunity. The very next morning everything changed.

I am so grateful we made it through this stage. Never Stop Fighting!!

Happy CHD Week!!

TTFN~