What a Parent of a Congenital Heart Warrior Wants You to Know

I wrote this blog post about 2 years ago but in honor of CDH awareness I thought it would be a good repost.

For the most part I try to be optimistic, but I can only be that way for so long until something breaks inside of me and I am just pissed. I get angry when people say the wrong things even though it's with the best intentions and love.

We recently discovered our soon to be third little girl has a heart condition just like her older sister. I got through the crying and depressive stage pretty fast but the anger side of grief is not ready to pass. I am tired of the responses from people looking from the outside in. I just really don't want to talk about the situation but people want to push and say things like "it will all work out" or "you've been through this before so you've got this" and "what doesn't kill you makes you stronger". These all seem like uplifting things to help a grieving parent but they don't help.

The killer one that really turns in my stomach is "God only gives us what he knows we can handle." As someone who has found Christ through my struggles, I find this statement to be false. I do think certain things happen to us with purpose, despite how awful they might be. Regardless, things happen that go beyond the laws of what we can handle and sometimes it does break us. It can break us in tragic ways where one takes their own life and it can break us in smaller ways, where one suffers deep down inside where no one else can see. This is not strength. This is change and not always for the better.

I know that how I'm feeling in the NOW can be off putting and make some people want to turn away. I don't blame them.

I'm struggling.

But please, put your advice aside and just be there when I'm ready to talk. Even if I am never ready to talk, that's okay because sometimes I can talk things out just on my own.

We recently raised funds for our annual Congenital Heart Walk in Chicago. This was the first year that Bella really understood what we were walking for and why. Yes, I walked at 38 weeks pregnant!

Holding her sister's hand as she proudly walked for herself!

What a Parent of a Congenital Heart Warrior Wants You to Know

1) Just because they've had corrective surgery does not mean they are cured.

2) The first time your child starts complaining of chest pain your world starts to feel like it's caving in.

3) We can be strong and make this look easy but deep inside we are screaming with anxiety.

4) As much as we try not to, we hoover. It's just something we do and we are always on the lookout for something so please don't judge.

5) We blame ourselves. Maybe just in the beginning. Maybe for years. We always question if there was something we could have done differently. Sometimes even after the guilt has gone away it starts to creep back.

6) This is a lifelong battle not just for our kids, but for us as a family and as parents.

7) We pray our children will out live us.

8) This never gets easier to deal with. We live with the constant awareness of the path ahead.

9) Strep throat and other illnesses are scary... Rheumatic fever can affect the heart even in patients that don't have any heart conditions. It can significantly complicate existing heart defects and conditions and all of this from the common strep throat.

10) We are fighters, too. We fight the feelings to cry, to freak out and rush to the ER when something goes wrong. We fight ourselves to stay calm and be brave so our kids can be.

11) We get angry. We get angry that we are up against CHD and it can be a ruthless fight and it impacts the quality of life in all members of the family.

12) It changes the family dynamic. It changes the way we are towards one child over another and everyone picks up on this. Everyone in the family feels this battle.

Thank you for listening and thank you for just being there:)

Baby number 3 is due in less than a week and I hope to have some cute baby pictures soon!!!

January Goal Setting

Now that I am FINALLY done with school, it's time to step it up and get in gear!!!

This isn't a New Year's resolution post because I think that we should be continuously thinking about self-improvement no matter how small our steps are.

I'm sure many of you have already heard of the SMART goals and this is not going to repeat that but it is important to understand the basic concepts if you want the goals you set out to attain for yourself to be successful. If you don't already know what SMART goals are, I would recommend researching it. Here is a helpful website on SMART goals.

January Goals

1. Start using a blog planner
2. Take a blogging e-course... any recommendations?
3. Organize all bathroom cabinets
4. Clear out the toy room for baby nursery
5. Start planning 80% of Bella's party, which is the beginning of March
6. Develop a consistent exercise routine

I know these seem pretty simple, but I'm a busy momma and I'm starting with baby steps here. As a mom, we tend to take on a lot of things and organization and having clear goals is what gets those little things accomplished.

What are your goals for January? Do you believe in New Year's resolutions?

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We can only Change Ourselves and our Perspective

The other day I had a conversation with a friend of mine.  We were talking of faith and she was explaining what her life was like growing up with out a mother and an alcoholic father who was not involved with his children. She is much older now and she spoke about all the resentment she had over the years and how she tried to talk with her father about her feelings.

What she told me really spoke to me in that she realized she couldn't change him, she could only take control and change herself. I think many times we have high hopes to change people or at least their opinions of us and our relationships with them. Everyone has their faults. Sometimes talking it out doesn't work and sometimes expressing how it made you feel doesn't matter. People will be who they are and "beating the dead horse" so to speak will get you nowhere. It's more of a fairytale dream to think that we can and we need to come to terms with the fact.

My friend said "If you can change your perspective and look at the situation in a slightly different, more positive way then maybe that tiny shift can make our whole outlook a little better and the cross (baggage) that we carry a little lighter."

I just stopped right there...
She went on to say "we can only change ourselves, we can only work on ourselves to be the best we can be. By working on ourselves to be the goodness that we hope to be, we can be a better mother, wife, daughter, sister and friend"

I know from my own experiences that many times I get so caught up in defending myself and who I am that I don't stop and look at what is really happening. We always need to be right, we always need to win (by using the term We I mean me and anyone else like this) and this mentality makes us stubborn and our understanding and care of other people is slowly pushed down the list of virtues. Some people can be downright mean and downright crazy and absolutely wrong... but we can't change that, we can only change ourselves and how we act and think and this year my goal has been to become a better me. I have been changing somethings in my life to live a healthier more natural and sustainable life but I have forgotten about the mental and spiritual self.

It's hard... I know! I fight with myself and think "why should I be the one to change?" Then I remember that the world does not revolve around me and my opinions or feelings. What we all hope this world possess is goodness and peace, Right? Fighting to be right and heard because we think ourselves are more important then anything in this world... fighting doesn't create peace of mind, it doesn't create peace. Fighting for peace only leads to fighting.

What have you been focusing on this year?

Isn't it ironic how we seem to get exactly what we NEED at just the right time!

I've been meaning to write this post for sometime now but today I wanted to join the link up over at Pour Your Heart Out.