Jenny-Setbacks are part of life...

We all deal with them, the setbacks of life.  You try and do everything you can to move forward but sometimes life gets in the way.  We had a major setback and I had to leave Mason with my parents longer than I expected to.  He was gone for 2 months this time.  Which is incredibly hard on him (and us.)  We have him home now which has been great. It's been so much fun to see the kids reactions to the new house and getting their new playroom set up.  We're finally settled in.  It's a brand new start for us. Mason is scared I'm going to leave him again and I can't promise that I won't. All I can do is try to focus on what I can change which is my attitude.

We got back our little prince who changed so much in 2 months! Mom and dad have been working hard on his speech.  He's telling jokes, being playful, and basically running the house!   It's been delightful to see his little face again, and hear his contagious laugh. To see Ava and Mason running through the house together has been amazing.  Such a blissful thing to see both of your children together, so happy to be with each other again.  I caught Ava putting away Mason's clothes for me this weekend!  So lucky I have such sweet kids!  So happy our Mason is finally home.  I can't say how nice it is to have everyone back together!

Last Monday we moved into the house, which has been awesome.  Really hard to fight with myself not to carry boxes, but I managed to unpack the house, slowly, piece by piece.  I also had to get reprogrammed last week.  I had to make a tough choice, either be able to workout easily, or laugh.  I chose laughing.  It's a problem with the sensitivity of the pacemaker.  I can choose to have it speed up my heart very quickly or very slowly. I can choose to have it be very sensitive or respond slower.  It's a hard decision. Because I get benefits and downsides to each option. I actually have to physically tap on my pacemaker to get it to click on faster at certain times.  Which looks pretty ridiculous I must admit.  I feel like I have a Reebok, pump button inserted in my chest! Ever feel like you just can't win sometimes?  I was having a bad week with my heart then I walked to get Ava from school. It started pouring.  Like Monsoon level, flash flooding, sideways, freezing rain.  I just had to ask, "Really God, this week is just going to be like this huh?" Sometimes you have to laugh through the rain.

It seems because we moved the location of the leads after I ripped them that the heart is conducting the electricity differently. It's just not as easy to program this time.  I had 6 blissful months of a heart that actually worked without having to think about it.  I have to think about it now, how to move without setting off something.  It hasn't been easy I'll admit.  I'll eventually get the settings just right but this is the part of heart disease people don't talk about.  Some of us don't get a free ride. But I get a chance to live, and I left a lot of people behind who didn't survive.  So I feel so guilty complaining at all.

Be grateful that you wake up everyday with the ability to breathe on your own, with a beating heart, and you don't have to calculate all your actions.  I'm always running through them.  Trying to figure out how to get to my intended goal and look normal/be able to breathe.  But when running up stairs is exhausting and causes you to breathe very loudly it's hard to cover up.  It's heartbreaking.  I'm usually pretty tough but this week has gotten to me.  I had 10 surgeries to be normal and I'm not quite there yet.  I might not ever be. But something I did get back was my ability to sing.  I didn't have enough oxygen the past few years to be able to sing.  I can now which has been amazing.  I didn't take it for granted.  We finally found a church that feels like home and I can sing again.  Just over a year ago I couldn't even stand during Mass because I was too weak.  I'm strong now and so grateful.

I get to raise my kids and see them have great new experiences in life. We'll deal with the rest.  But right now, today, I'm not where I want to be.  Setbacks are part of life, not matter who you are or where you come from.  All we can do is focus on the positive and try to get through each day, remembering and being grateful for all the things we have in this life.  For the chance I now have to see my kids grow up.  For the chance to be a dependable person again.  To be there for holidays, and birthdays, all the things I've missed over the years.  I'm really very, very lucky, even despite the setbacks.

Helping other heart patients has been my salvation.  Because it's something I can do to give back.  To be grateful for what I have been given, to share helpful information that only I know because I've had these surgeries.  No matter where you come from, we have setbacks, we have successes and failures.

Mason, our cute little guy!!!