When Craig and I first found out that we’d be having a special needs kid – particularly – a heart baby – I’m  not sure we both truly understood the challenges that awaited us.

We decided to proceed with the pregnancy, I did so much research, hooked up with support groups, got tons of insight on being a Heart Mom and being a Heart Family.

The path to now has been tough.  The ridiculous amounts of time hospitalized was a surprise.  The first heart surgery so soon – yet another surprise.

The difficulty of being isolated….another surprise.

I thought I’d be tough.  Stand up for my son – and not have a problem being isolated – keeping him from the public and from family and friends that were sick.  Asking tough questions…do you smoke, do you vaccinate, have you been feeling poor?

I thought I’d relish in my every day with Evan.  Enjoying him every second and since we almost lost him.

But, no. I’m tired of being at home.  I’m friend-sick – missing my friendships.

I miss laughing at lunch, fondue in the evenings, double dates….

I realize that life is still happening all around me.

Babies are being born – and they’re getting visitors no problem.

Friends are still meeting up for lunch – not worrying about the time constraints of medicine administration, feeding pumps.

Trips are still being made – without the worry of who’s going to watch a special baby that needs special attention.

I turn to the Heartland for my escape.  But even that is hard sometimes.  I’m met with stories of hard recoveries, babies waiting for transplants, babies dying too soon.  So, it’s not really an escape anymore…it’s another reminder that we’re isolated.  Isolated from the normals of the world…suddenly surrounded by just each other…our babies and their broken hearts.

I made the choice to isolate for Evan and for me.  I know I shouldn’t try to find something or someone to blame..but there are times where I blame myself for Evan’s heart and cleft.  I wonder if I had a bad diet, didn’t take the right amount of pre-natal vitamins…I know…it’s a dangerous road my mind travels down.

But isolating him keeps him away from all the junk that could make him sick and land us in the hospital.  And, it’s a peace of mind for me.  So, if he does get sick, I know that I did everything possible to keep him healthy.

Isolation comes at a cost.

I forgo lots of normal.

I also wonder, once we are past this stage, who’ll be around.

I have great friends.  Don’t get me wrong.  But, Craig and I have both suffered in our relationships.  We’re not sure if people are afraid of our lives and don’t want to get mixed up in the drama we face daily.

Or if they aren’t sure how to approach us.

Or if our reality is just too much for theirs.

We are seeing friends come out of the wood work…to really make the effort to keep themselves in our lives despite our absence from the everyday.  They are keeping me – us – afloat.  Giving me hope that our friendship can withstand anything.

We’ve also seen friends blend into the background…suddenly silent and absent.  It does hurt and it is disappointing…but not really surprising.

It’s been hard.  Really tough to stay away from life for the sake of Evan.  And in reality – it is such a small amount of time in the grand scheme of things.  And I’d gladly isolate forever if it meant having Evan here for that long….

I just wonder, once we are out of this stage…will we find ourselves still in isolation…or will we have a normal life surrounded by those we love once again.

But for now…we are living our lives in solitude.  And on the rare occasion…we are met with those who are trying to give us a bit of normal and giving up some of their normal in order to do so…and we are so thankful they are doing all they can to help protect our *broken* hearts.



  1. Jared Richardson says:

    Hey Czarina, Im not sure if you remember me from the island, but we mainly knew each other in passing. Im not sure exactly what baby Evans heart condition is, but i had a similar thing in my life. I had a little sister that was born with Transposition of the Great Vessels. I remember as she was born she was so blue, but we loved her so much and she was so pretty. What her heart was like on the inside had no bearing on how she was on the outside. She was actually the reason I decided to go into medicine. She was born April 18th and 6months later she underwent surgery to fix it, but passed away during the procedure. There is not a bday or the october she passed that I dont think about her and what she would be like or what she would be doing. If it wasnt for her I dont know that I would be where I am today. I always asked God “Why?’ sometimes angrily. So mad that he would take an innocent, beautiful girl that did nothing to deserve it. God works in mysterious ways and I cant imagine how hard your situation has been. I know we dont know each other that well, but I wanted to say I respect you so much for your unconditional love for baby Evan and to say hes beautiful and you guys will have a long and happy life. Take Care and Ill keep up with him on FaceBook haha.


  2. Hugs!

    Isolation is HARD. We did it off and on for over a year. I remember occasionally when we’d get out of the house to go to a doctor’s appt, and it just feeling so odd that all these people around me had been going to work and carrying on with their lives this whole time. I was still trying to let my eyes adjust to the sun, lol.

    Once you’ve experienced how traumatic a hospital stay is, isolation gets a bit easier. Each time I’d get the urge to go to a restaurant or to a gathering, I’d remember Mason thrashing on a table while a team held him down blowing all his veins trying to get his IV in.

    We had some visitors. We were just very strict, used lots of sanitizer, and didn’t let anyone hold or lean over Mason.

    While I’m still wary of sickness, our isolation seems like so long ago! You will get through it!

  3. Let’s Skype…I do it all the time with Megan! I’m totally down…I quit at the end of July and will be staying at home not knowing what in the world I’m doing…it could be entertaining to say the least!

  4. Isolation is very hard. And people just honestly do not understand. Even close friends and family. You may hurt their feelings and they may hurt yours. But keep in mind it’s only for a short period of Evan’s life. And it is soooo worth it. Keeping him from getting sick is 110% worth it. It is hard to make it through and once you are through, it’s hard to break that cycle and get back into crowds or let others touch your baby. But people have to understand you are doing this to save his life.

  5. Isolation is very hard, but our family grew so much during those months. We learned about it each in a way that we would not have if we had been running around like we were before. Friends and family may not understand, but keep trying to get and keep their support. I know it may seem difficult, but you are doing this to keep him safe and hopefully everyone will understand.