Change.

My, my have things changed for our little family since my last post.

I feel like I could write for days and not finish saying what I want to say. What I NEED to say.

I'll save that for my book! ;)

The lessons we have learned are unending.

The struggles we face are daily.

The sadness that crosses these faces because of HCM are moment to moment and day by day.

However, the resilience??

WOW. 

My babies are some TOUGH cookies.

Just a little update that most of you already know because of Facebook...

3 of our 4 kids have been diagnosed with Hypertrophic Cardiomyopothy since my last post.

Kooper, Case, and Kenna Mae have all been seen at the amazing Mayo clinic by the best of the best pediatric cardiologist in the world. It was a fabulous experience and we are so blessed to have doctors that are top notch. I've learned so much about this disease since August.

First of all, the extent of damage in my boys heart would have most definitely killed them on the field or in the gym at some point in their life. We are so grateful for diagnosis and thank God every day.

This little dude is our most advanced case.

Case's septum is the size of most grown men with the disease.

He has some flow restriction and he has damage to the tissue in his heart.

We will see our Cardiologist in Lubbock in a year and return to Mayo in two years.

At that time, we will be faced with the possible reality of surgery.

The first and most common procedure for HCM is an ICD or a defibrillator implanted into his abdomen with leads running up to his heart. We are keeping our fingers crossed this won't be the case, but we've learned a lot about  facing our giants around here and are preparing for that just in case.

Case has been taken out of all activities from football to golf.

He can do most things leisurely like walk around the block and ride his bike.

His P.E. teacher has done a lot of work to help us keep him in P.E.

Kooper is in about the same shape as Case. His septum is actually the same size, but he has less damage.

However, HCM grows most rapidly during growth spurts and I don't know if you've seen Koop lately, but holy canoly he has grown.

He has gone from 5'6" when he was diagnosed in August, to 5'10" in March while at Mayo.

Our doc wants him seen every 6 months to keep an eye on things.

Kooper can still play golf, which he has never tried before so we are looking forward to something new!

He has had a rough year, but seems to smile constantly and makes me proud with his strength and bright attitude. He's so cute. I tell him that every day. lol.

He's a Momma's boy!!

Kooper participated in LTC this year and here is glimpse into his heart....

(photography project)

Kenna Mae has also been diagnose with HCM. While her heart looks pretty good right now, her echo, EKG, and genetics test all confirm the diagnoses.

Her septum looks good.

Her EKG does not.

So, here we are again.

She has been ok'd for softball and golf.

We had to take her off of her basketball team mid-season and it broke her heart.

She's spunky, sassy, sweet, and everything in between.

She will be seen once a year in Lubbock and every 2 years at Mayo.

Kate has been completely cleared of the disease.

Praise the Lord.

She has struggled with some guilt, but overall is super protective of her little brothers and sister and grateful she has been cleared. One day at a time we are all learning to deal. 

I can't believe it's been 9 months.

9 month of lesson after lesson.

Here are a few that have changed our life and given us strength...

*We started out this journey very bitter. That's just the truth. I couldn't even look at a healthy kid throwing a football without wanting to throw up. But you know what? It's passed. Every person has their own struggles. Divorce, alcoholism, cancer, death of a loved one...ours is HCM. Perspective is our word of the year. One glance around this world of ours and we put our life into perspective. Yes, things could be better, but they also could be much worse. This is our journey and no one else's and we are learning to praise him in this storm!

*Almost every day someone says something that sticks a knife in our gut. They don't know it and they don't mean it, but it hurts. We are learning to laugh it off and move on and FORGET who said what!! Just because HCM is at the front of our brain and hearts every second of every day doesn't mean it is for everyone!! lol. The other day someone Kooper has the utmost respect for said, "athletics and sports is the only way to build character and make a future for these kids". When we got home Koop said, did you hear what he said? And the only way for me to respond was, "Well, crap, Kooper. You are destined  to be a nobody. Those awesome grades, hard work-like-a-man work ethics, compassion, love for Christ, smashing good looks, and killer smile are gonna get you nowhere in life!!" And then we all busted out laughing. 

*I do believe that sports builds character in kids. However, we have spent the last 9 months trying to keep our kids focused on the mark. Christ. Character. Hard work. Determination. Winning a game isn't the only way to get there.

*We miss the hustle and bustle of sports every single day. EVERY.SINGLE.DAY.

*Kate is still heavily involved in sports and we love that. She works hard and plays hard. We are SO proud of her!!

*What was the single most important thing I learned at Mayo? My kids disease is so much more than not getting to play sports. I was slapped across the face with the reality that MY. KIDS. ARE. SICK.  That was a hard one on this Momma. However, it has kept me focused on life and love and hugs and late night cuddling. 

I was reading a Sports Illustrated article from 2007 the other day about athletes and HCM. I am so glad I did because I read something that changed my life forever. There was a quote from a mother of an all-state basketball player that was going to play college ball, full ride, his Freshman year. He was shooting hoops with his Uncle in the backyard the summer before his first year as a college athlete and dropped dead. He had HCM and didn't know it. I don't want to quote his mother directly because I can't remember her exact words, but here are mine....

God created my child with HCM. From the moment of their birth they have had the disease. God DID NOT create MY kids for sports. They were not created to play HS basketball or football or run bases. He created them for something else. We are just excited and longing to find out what that is!