Still Learning

As I think about growing up in Mesa, Arizona, I recall how I spent my summer days outside. 122 degrees or not, you could find me in the neighborhood swimming pool, climbing trees, or running barefoot through the field, even racing barefoot down the blacktop. Our family struggled financially, but we had a home to live in. We had our set of struggles for sure, but in looking back, I can remember many carefree days. We had no idea my heart would eventually be a ticking time bomb from a CHD that would lie dormant until I was an adult. I sometimes have wondered how much the strep infections I had lead the the weakening of my heart. Curiously, my heart now beats strong, with numerous days ahead- too many to count.

There are days when it is hard for me to believe that I am approaching the one year anniversary of my successful heart surgery. Where has the time gone? I am finally coming out of the struggle I've had of of not knowing which direction to take my life. Although it has taken a long time, I finally understand why God chose to spare me. I have a mission I have not yet completed. I have lives to touch, lessons to learn, others to assist. I cannot yet be as the angels when God still needs me here. The storms still rage around me, but there is peace in knowing where I am going. As long as I put my trust in God, He will guide me with His loving hand. Also, I am getting a bit excited, because I am going to be celebrating my one year heartiversary in a big way! I look forward to the new memories with a happy, healthy heart.

My own experiences are bringing me to people that have changed me life for good, people I would have not met otherwise. I have made some new friends who live just down the sidewalk from me. They have a brand new baby, just a month old. When he went in for his one week check-up, they learned he has a condition called Total Anomalous Pulmonary Venous Return (TAPVR).  He was life-flighted from the doctors office to the Primary Children's Hospital (PCH) where they have one of the best cardiac heart teams in the country, if not the world. There, he had to have emergency open heart surgery (OHS) in order to live. Last night, they had to take their baby back to the hospital last night to admit him for an infection. During that time, I had the blessing of watching their eldest, barely two years old. I was in awe of the faith the parents of these baby boys carry. They have full trust in the doctors and in God that whatever is to come is supposed to be. Some may say they are naive. I say their faith is refreshing!

Late last night, after the parents came to pick up their eldest son, I sat down to research TAPVR. I found this website which is great at helping one learn about the various defects. During my research, I learned that there are 49 Congenital Heart Defects (CHD). FORTY-NINE!!! Do you know that 1 in 100 children are born with a CHD? My defect, ARVD, is classified under Electrophysiology Defects. Although I am no longer struggling with mine, I still read up on it, so I understand it better. This information may be critical in months and years to come.

It is not until now I have publicly shared some information. Until now, I was hoping there is nothing to tell. Yet, I feel compelled to share it, for there may be another mother who is enduring the same emotional turmoil that this mother's heart is feeling. There is a 50/50 chance my children will have my genetic condition. So far, my two eldest have not shown any signs. My third, however, is showing nearly every one. Curiosity strikes my spirit strongly as my husband and I prepare for our youngest son to see the cardiologist. On August 6th, we will take him to see a leading cardiologist at PCH. From there, it will be determined what tests are necessary, if any, to learn of the functions of his heart. As a mother and a CHD survivor, I know, I know there is something not quite right. I see it when he wakes up from a deep sleep and his heart is racing at more than 130 BPM. I see it when he walks down the hall, suddenly becoming super fatigued. I see it when we are out hiking together and I check his heart rate, where it has drastically dropped to the low 60's. Something is not quite right. I was hoping it was years before we would have to face this again, if ever. The time has come much sooner than I anticipated, especially only learning a year ago that one or more of my children may dace the same future as I. I just pray for strength on his behalf that whatever we are facing, he will survive.... that we will survive.

I know it is God's will in whatever is to come. He created B-Man's heart and mind. God knew what He was doing when He wired B-Man's brain in such a way that modern doctors would tell us he has autism. This same Creator also knew what He was doing when He put this exact heart in B-Man's body. It is a perfect heart- perfect for whatever lessons B needs to learn in this life and what God needs us to learn as well. God is perfect in His knowledge, even if we are not. Peace does not evade me, but instead permeates my soul. God is with us, walking this road- no matter where it leads.

My name is Jenny McKinney. I am a heart warrior, and possibly a heart mom. Instead of chocolate, I think I shall return to bed.

Happy Val...uh..... Heart Hero Week!!

For many in this country, Valentine's Day is overrated. I am not saying that because I was jilted by a lover (I watched "Wives and Daughters" this week. The word "jilted" is fresh on my mind). Nor do I say that because I am struggling with being alone. In fact, I am very blessed to have an eternal companion of 17+ years. As some struggle with not getting chocolate's or flowers (because that is the only true gifts this day, right? >eye roll<) I like to look at this holiday a bit differently. Today, as we say at our house, is "Love Day"- a day to show love- in all forms... to all people. This day is especially meaningful to those in the heart community, because this is the day we really celebrate our Heart Warriors.

I realize I have not posted everyday this CHD Week like I planned. Sometimes, life gets the best of me and I get a little pouty while I struggle. It is the stories of the Heart Heroes that has pulled me through it, though. Today, I am going to share the stories of a few Heart Warriors that I know will touch your... well, heart!

Meet Emily. She was born with Hypoplastic Left Heart Syndrome. This means, Emily has half a heart. How do parents of such a Heart Warrior cope with this life-changing news? Please read Emily's Story and come to understand true courage. Emily is my heart hero.

Meet Capri. She was born with Ebstein's Anomaly. I do not even know what to say about this Heart Warrior except, please have a box of tissue ready as you read her story. Start at the very beginning so you may walk in her mother's shoes, if only for a moment. She is my Heart Hero. Capri's Story

Meet Jaxton. Born with Hypoplastic Right Heart Syndrome, Double Inlet Left Ventricle, and Pulmonary Atresia. Like all Heart Warrior stories, I cannot read them without a tissue in hand. This one is no exception. I love Jaxton's smile. He is my Heart Hero.

In reading these stories, perhaps you may realize that although today was founded upon a man who was executed, then turned commercial (like every other holiday), it can be something special and dare I say.... sacred... as we celebrate loving our Heart Hero Warriors.

My name is Jenny McKinney. I love my Heart Heroes. Now, where's my box of chocolates?

The remainder of my heart scar on my neck and
me with my new hair cut.

Oh and Happy Heart Day to me... 6 months and two days since my heart miracle.

Sherri... my Heart Hero Sister

Who do you know with a CHD (Congenital Heart Defect)? As I have been getting to know families in the heart community, it amazes me how these children are able to keep going with the surgeries, pain, and procedures day after day, year after year. Just as much, the CHD parents awe me with their never-ending fight to do everything in their power to make these children well, to give them the best life they possibly can for as long as they have them. 1 in 100 children will be born with a heart defect. Most of them will go on to having at least one surgery in their lifetime.

Meet my sister, Sherri. My sister is a CHD survivor. Sometimes we hear the word "miracle" and shrug it off. Well, my sister is a miracle. In 1974, Sherri was born with a heart murmur and a hole in her heart (VSD). Medical technology was not as advanced as it is now, so the depths of severity was not known. What the doctors in Kansas City, Missouri did know was that she needed surgery to save her life. Because of the circumstances surrounding our mother's marriage, our mom had to take her two children (ages 2 1/2 and newborn) and flee, so surgery was not an option right then. They trio boarded a plane with our aunt (Mom's sister) and went home to Mom's parents in Arizona. There, the follow up would take place.

The miracle came when our beloved Grandpa Berry laid his worthy hands upon her head. He administered a Priesthood Blessing- the same kind of healing blessing Christ gave when He was on the earth. It was through this blessing that her heart was healed. Our Grandma Berry used to say Sherri's heart sounded like a washing machine but that would not last forever. Sherri was taken to Phoenix Children's Hospital where she spent the next few years undergoing tests and follow-up care. Even this morning as we talked on the phone, she recalls sitting in the hospital room, being hooked up to wires. She remembers the blinds being in an open position so she could see outside of the hospital. She was worried someone would walk by and see her that way, and it made her a bit nervous that she was not covered up.

Sherri never did have to have heart surgery. After the blessing the hole closed and as far as she knows, the murmur went away. Although she has faced other health challenges in her life, her heart is whole again. She is a walking miracle, granted by God.

I am grateful my sister is here. I am so grateful that we both had our miracles and both of our hearts work well now. I am in awe of the miracles of God that have been granted to our family. CHD is real. Please take time and make yourself aware.

My name is Jenny McKinney. I am the sister of a Heart Warrior. This morning I really do not care for chocolate.