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!!!

Never Stop Praying

Do you ever just get that feeling in the pit of your stomach that the ball is about to drop? I do, a lot. Our family has had its share of stress. I can never just feel like things are right because at any time it can be taken away.

I get that feeling every year before Bella's cardiology visit. Each year I've been reassured that the world is functioning normal and it's just a symptom of my crazy anxiety.

This year it was not so reassuring. This visit, the annual visit is now increased to 6 months... that is never a good sign when the doctor wants to see you more often. I sat there listening to my husband's voice over the phone and the tears began to swell up. She wasn't doing so well anymore and the worst began to appear in my mind.

The loss of a child is the worst kind of loss out there and I can't begin to imagine the feeling. If this was only a fraction then it would probably kill me. Yes, I'm jumping to the extreme. Realization that this situation is getting worse, never to get better until a surgery, is frightening. The chest pains were not from a chest cold, they were a symptom of the worsening of her condition.

Sometimes you forget that you have a child with "special needs" like a heart condition. Sometimes you just think that they will grow up strong and healthy to an old age. You forget through all the normalcy and good times.

You take the normalcy for granted.

Sometimes I blame my lack of prayers in the past year and a half. There shouldn't be blame in this situation. I can't help but feel accountability. I forgot how life was precious and to ask for God's grace and healing. It's those little things we take for granted. We need to not only pray when we want or need but when we are grateful and fulfilled or when things are going just fine.

It is that time of year

My little baby has be sick now for two days. She woke up in a very lethargic mood and a bad case of dehydration. When ever something is not well with her I get so much anxiety. Even from a cold, but she was so sweet today. She is not very affectionate with me on most days but today I got to experience how much she really needs me just from cuddling in my arms all morning. It really touched my heart. I hope she does feel better but it was definitely the silver lining in all this.

We have a cardiology appointment coming up. I always get nervous about two weeks before these visits come around. Its like a lingering storm cloud. Fortunately in the past is hasn't really rained and the clouds blown over. I hope for the best on this one. It's not for another two weeks, but it will be on my mind until then.

What is your cause?

The day after Bella came into our lives we found out that she had several congenital heart defects. She was then taken from our side, and rushed, by air vac, to another hospital. I can't tell you how I felt that night in the hospital with out my baby. The only thing I can really remember is telling myself "what did I do wrong?" "What could I have done differently?" "This is all my fault!"

Seven days after she was born, Bella had heart surgery to repair one of the defects. Coarctation of the aorta is the name of one of the defects, and what her surgery was repairing. In addition to the coarctation, she also had VSD, and a bicuspid aorta (which causes aortic stenosis). The surgery actual only lasted half the time that they had prepared us for. Her recovery was great, and she was able to come home a week later.

I was very isolated the following months after her surgery. I was only focused on one thing, and that was Bella. I didn't pick up the phone when friends would call, and I avoided family from seeing her. I was depressed. I'll admit it... I had postpartum depression, and didn't want to talk to anyone. I blamed myself for everything.

Since then we've had constant routine visits to the cardiologist. She will forever have to do this, as these issues can and will affect her the rest of her life. There may be future surgeries, its hard to tell when and for what.

Bella is one of the strongest, and toughest babies I have ever met. I remember seeing her in the pediatric ICU, with all those IVs and wires hooked up to her. I tried to be so strong then, but those visions still haunt me. There must have been a hundred different tubes, I didn't even know where they all could go. Even now it doesn't seem like pain effects her very much. The hardest and toughest falls cause only minimal cries. I look into her eyes and I see a fighter.

I can't help but still hold myself accountable in someway for my child's heart. I didn't plan for her. and I didn't even know I was pregnant till much later. My nutrition was poor and I smoked and drank. Anyone of these can be a factor, or none at all, but I will never know.

I know that God brought her into my life. and blessed me. There is a reason for everything... especially for her heart. I don't know why yet, and I may never know, but I'm thankful regardless. I truly believe that God only challenges us with what we are capable of handling. He's thrown a lot at me these past couple years.

Everyone should have a cause that they are passionate about, that moves them to do more. If everyone on this earth had a cause like this, I wonder how much nicer this place would be? If we gave just a little more time, money, energy, voice... could we... cure aids, cancer, world hunger, homelessness, terrorism, hate? The list goes on. Everyone has got to feel strongly about something?


I am a mother to a child with a Congenital Heart Disease. This is a big part of who I am. In a way, it does define me. I'm not like all the other mothers, who have children that are healthy. I'm put into that category. This has changed me in so many ways, and has set me apart from other parents. I have changed my ways and opinions of parenting, and life in general. As much as we try not to categorize, or define people by the outsides... we still do and for good reasons, because a large percentage of the time it's true.

Because of this, I have decided to reach out to other parents who have dealt with this same thing. My cause is to support all the families out there that are affected with CHD. It's the most common birth defect.

http://www.littlehearts.org/

What is your cause?