Choices

Being the parent of a child with a Congenital Heart Defect is definitely not a club I would ever want to join. I have slept on hospital couches, I have fallen asleep to beeping machines, I have eaten Oreo's at 2 am because I could not sleep. I had to learn what a Coarctation of the Aorta with complications was. I learned in order to save my daughter's life I had to agree to the following:

-To stop my daughter's heart and hook her up to the heart lung machine
-Allow the surgeon to cut out a portion of her Aorta and splice the remaining parts back together
-Then hope her heart would restart when they were finished
-Did I mention that her heart was the size of a Walnut?
-Did I mention they had to break her rib cage to complete this procedure?

Once you join this "Club" you have to make choices and force your child to make choices that they do not understand or want. So they aren't really choices this is the problem and this is what the surgeon has to do so your child can live!

As our journey continued my child knew she was different and she assumed constant visits to doctors and specialists were common place. She even calls Levine Children's Hospital "Her Hospital". We know almost all the staff at the Pediatricians office by first name. One day her Cardiologist took time out of his busy schedule to watch her play soccer. This is certainly not the life I envisioned for my child.

If I were to share anything with other parents it would be to allow your children to make choices and give them their power back. They can't refuse to go to the cath lab, get a blood draw, lay perfectly still for an echo or refuse the doctor to do his job. But as the parent can give them other choices. What do you want to wear to the doctor appointment? Where do you want go after the appointment? What do you want to watch while the tech completes your echo? Most of these decisions mean nothing to most people. To a child who has to suffer through these procedures, those simple choices mean the world to them.

These decisions that consume a heart families everyday life mean nothing to those unaffected and unaware. Through the month of February I want to make you aware. Most unaffected will go about everyday life March 1st as if nothing has happened. For us Congenital Heart Defects make us aware March, April, May, June, July, August, September, October, November, December and January too. Simple put it never ends it is always there and we are always aware.

#areyouaware

TTFN~

I will not apologize......#areyouaware

Before October 2008 I had never heard of Congenital Heart Defects (CHD). I was raising the family next door and life was like any other American family with 2.5 kids. Then everything changed we became a statistic I had never heard of before, we were 1 in 100. Did you know every year 1 out every 100 babies born has a CHD? Did you know every year 10,000 babies are born with a CHD. Did you know more children die from CHD than all childhood cancers combined??

If you didn't know don't worry most people don't. But for me that is not ok. I do not accept that there is not enough money for research to save these babies. I do not accept any parent should have to bury their child from this disease. So I will share today, tomorrow and the day after that, the week, months and years after that. I want everyone to be aware about this disease. There is NO cure for this disease just surgeries to prolong life.

I will not apologize for sharing or over sharing what I know about CHD. I did not choose to be a member of this statistic but I am. My daughter did not choose to have open heart surgery to save her life but she did. She is one of the lucky ones to be winning her fight against CHD, but she is not cured.

February is Congenital Heart Defect Awareness Month and my hope is to make you aware. If you get annoyed because you feel like I am stuffing it down your throat I won't apologize for that. If it wasn't for someone becoming aware my daughter would have died in 2008 and I wouldn't have deserved that.

So #areyouaware??

TTFN~

Don't be afraid to "Pray the Scary Prayer.......

DON'T BE AFRAID TO PRAY THE SCARY PRAYER

Before CHD (Congenital Heart Defect) invaded our lives I don't even think I knew what a Scary Prayer was. Since our CHD diagnosis I would be happy to help pray the Scary Prayer with you or for you. I promise the Scary Prayer is nothing to be afraid of.

Several months back on one of my social media sites I saw the post, "Don't be afraid to pray the scary prayer"

It was one of those moments when I read the post it stopped me dead in my tracks. The thoughts that rushed through my mind were Jackson and the three times I released him to a surgeon, Madelynn's entire heart journey, visiting with families who are waiting for a heart for their CHD warrior, making memory boxes for CHD warriors that have earned their wings, recent events of CHD warriors fighting for their lives and sometimes losing all in about 30 seconds.

Not every one's scary prayer is the same. Some of my scary prayers were hoping my sisters twins would survive premature birth, my son would not have any complications to his three surgeries, praying daily that Madelynn would be strong enough to win her CHD battle, praying some of our CHD Warriors don't earn their wings. I can assure you that not all of my scary prayers were answered.

The importance of scary prayers is praying them out loud. Hearing yourself say it out loud helps make it real and will help you cope. To this day certain words or phrases make me cry. The realization of where we were and how far we have come can be overwhelming; almost breathtaking. Today as I stand on the other side of our journey, I remember praying for help we would make it there.

Don't forget that not all Scary Prayers are answered. Sometimes the lack of an answer is the answer. This was one of the hardest concepts for me to accept. But it is also harder to help others understand it. I encourage you to never give up and don't let fear control whether you pray your scary prayer. I will never stop praying my scary prayers.

TTFN~

Happy 12th Birthday Punkin!!!

She is a soccer player
She is a grand-daughter
She is a clarinet player
She is a daughter
She is big sister
She is basketball player
She is a niece

I love her freckles
I love her blue eyes
I love her long brown hair
I love her silliness
I love her sneakiness
I love her funkiness
I love her determination

Today my oldest turns 12

12 years of laughter
12 years of surprises
12 years of awe
12 years of happiness
12 years of tears
12 years of fighting
12 year I wouldn't trade for anything. 

Happy Birthday Kaitlynn!!

I love you to the moon and back

Greater than I ever thought possible

Seven years ago this morning I was anxiously awaiting for Phil, his mom, his sister and my parents to arrive. They needed to hurry up it was almost time. I was close to falling apart and no one was here yet. When the medical staff came into Madelynn's hospital room to wheel her down for open heart surgery, still no one. When I thought I was at my breaking point, the cavalry arrived. I was not going to be alone when I surrendered my child to the surgeons. Everyone who promised they would be there, was there,  they all kept their promise.

Promise is a dangerous word and should not be taken lightly in an capacity. There are very few things that can be promised and kept forever. As we have traveled this heart journey with Madelynn, I have had to break promises because I tried to live life like before her diagnosis. I could no longer do that. I was learning the hard way......we were a heart family and we needed to find the new normal. I also learned that it is not impossible but you need to be open and accepting to your new life.

I can promise you that seeing your child right after open surgery is NOTHING like you thought it would be. When I meet a new family and they are facing surgery in the immediate future I always ask what has the doctor told you about after surgery. I was not prepared for what my child would look like after surgery. My best description is stunned silence. Thankfully the nurse caring for Madelynn knew that deer in the headlights look and went into action. She just took the steering wheel and lead us into our journey and explained EVERYTHING.

Realizing that not everyone will have a stellar nurse like we did, I can only remind you to ask questions and LOTS of them. If you don't know, ask. Don't be afraid to ask the same question more than once. Because you are in a form of shock make notes to ask questions later. If I have learned anything in this journey it is to ask questions and take charge of your child. Who will fight for them if you don't? I feel all heart parents (ok all parents) should feel empowered to fight for their child. If you won't fight for them who will? It was not an easy journey. I watched Madelynn fight for her life everyday. She never gave up so why should I.

Sadly while I was fighting for her I lost friends. They do not understand your journey and sometimes are too afraid to take it with you. People I really thought were my friends disappeared and never returned. However, you all know after the rains there is always sunshine and the promise of a new day. For me it was new friends. Obviously I would have never made these new friends with out this horrible experience. But I would never trade them back.

They understand nerves before a heart doctor visit, tears when today was not what we thought, and the urge to vomit when you hand your child to a surgeon knowing they might not survive. They understand some days you will find each other on facebook at 2 am because worrying is keeping you up. There are things you don't need to speak about because it is just understood and accepted for face value any day of the week and twice on Sunday.

I really thought I had life together before this journey. God had other plans and gave me Madelynn with all of her surprises. I would have never chosen this life, EVER. But I am here, I am living it and I am so lucky for Phil, my children, this crazy journey, my heart family friends and all that life has in store. What I can promise you today is that there is life after a CHD diagnosis. Maybe not the one you thought but it can be GREATER than you ever thought possible if you embrace it and live IN every moment.

Happy Heart Day Madelynn!! I love you to the moon and back!! Thank you for making my life greater than I ever thought possible.

Love, Mama

TTFN~

The day when life changed forever

Sometime after 2 pm October 29, 2008 Phil and I were being told that our beautiful 10 week old daughter had a broken heart. I can only imagine it is like being hit with a flash grenade. Suddenly the world stops, you lose all your bearings, you are forced to immediately regroup and figure out how to survive.

But we didn't just survive, WE THRIVED!! Most importantly we did not do it alone. The doctors for what seamed like hours educated us about what it meant to be a heart family. Madelynn would have Open Heart Surgery the next morning and we were trying to process it all. When I hear about a newly diagnosed family, the flashbacks of my own journey take a front seat for a few days. When the opportunity arises I always want to help a new diagnosed family. I want them to know there is life after a CHD diagnosis and they are not alone.

We were lucky enough to have family especially my dad. As soon as he could he came to the hospital. He asked a lot of questions from me after we talked to the team who would ultimately save Madelynn's life. To be honest it was the best thing he could have done. For me to share and repeat the things the doctors had just told us helped me manage what was happening. He would ask me questions I should have asked Madelynn's medical staff. It truly helped understand, build my own list of questions to further understand what was about to happen. This is always one of the tips or things I offer to help families with. Do they understand what is happening? What don't they understand? I am no medical expert but thanks to my dad I have learned how to help ask questions or create a list for the medical experts to solve.

Although medical experts solved a lot of issues and family helped process it, a best friend just makes the world better. Seven years ago this evening my best friend called from Florida and we talked until my phone died, I plugged it up and we talked some more. I know we talked about Madelynn's upcoming journey. Since she is a nurse she helped me understand some of the things I was going to ask the doctor. Most of all she was just there. She is the one person for almost 30 years that always makes my world right again. She is just a special kind of wonderful that I am truly lucky to call her friend. In about three weeks my world will be right again because I will be engulfed in one of her hugs, humor and family.

A CHD diagnosis is terrifying, something I would never wish on even my worst enemy but is is survivable and life does go on. It might not turn out like you envision but it worth every tear, tense moment, horrible day and ounce of fear you carry in your soul. My life changed forever October 29, 2008 but is was all part of the plan and I am a better person because of it.

I love my heart warrior with every ounce of my being and am truly grateful for the journey. Love you Peanut!!

TTFN~

16 years........and counting........

Today Phil and I have been married for 16 years. We have been together for 18 years. It seems like forever. Some days I can barely remember life without him. Other days something stops me dead in my tracks and I remember everything about my life without him.

This month I have seen LOTS of friends posting wedding photos celebrating their anniversary. The perfect wedding day, wedding smile, the thinner her and toner him. Pictures that include parents, grandparents or that special family friend that helped make you who you are. Some of them gone but most of them just older and none of them ever forgotten.

But this life I made with Phil is not about the wedding day bliss. It is about the choice we made to love and cherish this life together no matter what...........

No matter what..........Did no matter what include waiting for me to finish college before we started a family? the craziness that includes step parents, step brothers and sisters, half brothers and sisters? Job loss? Economy crash? Fatal accidents? Burying someone way too soon? Birth defects? surrendering your children to surgeons 4 times? Three children under the age at 5?? The ultimate answer is yes!! All of this and more, our list would scare you into tears. 

These are the things that have truly tested the vows we took and made us who we are today. Everyday life is hard. Sometimes we get really angry, sad or we need to cry. Sometimes the anger, sadness or tears came from the one we promised to love forever. Thankfully our parents and siblings who look a little older than they did 16 years ago have stood the test of time with us. Our glorious friends who have been there since the beginning or joined us along the way; we would not have been able to do this without you.

Right now we are in the thick of it. We have a middle-school-er, 5th grader and a 2nd grader. Life is going to get much more complicated before it gets simpler again. All three of them play soccer and our oldest made a Classic Travel team (an amazing feat for an 11 year old). Our son also plays basketball. We spend a record number of hours on the soccer field and basketball court. I know in the back of my mind one day I will miss all of this.

That wedding photos you see of us looking younger, thinner, and grinning from ear to ear was only the beginning. A photo of us smiling today means that we were able to shower, find a brush, clean clothes and threaten the kids to turn that best smile on just long enough for the camera shutter to capture it. It means we made it this far and we will Keep Moving Forward!  

Pictures are just that one beautiful, ugly, scary or funny moment in life that we were able to capture the millisecond it occurred and nothing more. As we continue to live the vow we took 16 years ago, we will look past the milliseconds that have occurred and do our best to savor the moments to come. Today we send a heart felt thank you to those that have traveled this journey with us. For those that came along before this adventure began we thank you for preparing us to start the journey. We are so glad to have crossed paths with you along the way.

Most importantly to Pilbert.......When you think about how life started before we met most would have never believed we ever crossed paths. Thank you for melting on our wedding day so I could be married in the same church my parents were married in. Thank you for always holding me up every time we surrendered a child to a surgeon. Thank you on those really dark days we thought Madelynn might not make it for being my light. Thank you for always helping me find joy in the chaos. Thank you for always making me laugh even when I didn't want to.

Happy Anniversary!! I love you most!

TTFN~