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~

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~