Tuesday, February 15, 2011

Blog Event - Relationships in the CHD world

Some of you know our story.  Some of you just arrived to our blog.  To all those who visit us, I just want to start by saying thanks.  Thanks for stopping by to learn a little about our life and to meet our family.  We are glad you are here!!

Today I am participating in a CHD Awareness blog event, hosted by a heart mom friend of mine.  It is on an interesting topic and one where I will definitely be sharing from the heart on our own experiences living as a heart family.  It's a topic that all of us face.  It's challenging but rewarding at the same time.  Relationships.  Spouse, family, friends, coworkers and everyone else we meet everyday.  Please be sure to click on over to her blog at to read other's stories.

And two become one....a little background on "us"!
Dustin and I met during the summer before my Junior year in college.  At a frat party.  Funny because neither of us were greek, but both had mutual friends who were.  God was definitely at work that night.  We got along great and started dating exclusively pretty soon thereafter.  A little less than 5 years later, we were married in March of 2006.  Then a few years later, in September of 2009, we gave birth to our little CHD warrior, Liam.  Little did we know when he was born, how our whole world would change.  But looking back, I know God purposed everything exactly as it was supposed to be, and I am thankful.

Commitment, love and prayer has remained at the core of our marriage.  Commitment to honoring the vows we made and to standing by eachother.  We made a commitment, not only to eachother, but also to God, who is seated at the top of our love triangle.  Love, God's masterpiece that is the core of our beliefs.  And prayer.  Because prayer is a natural prose of faith and love.

"Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiastes 4:12

Having a child with a CHD, enduring three heart surgeries and facing multiple challenges, to say this put a strain on us is probably an understatement. We have learned more about each other and ourselves in the past year than we have probably the entire time we have been together.  We had to learn how we cope with all the feelings that come with facing trauma...anger, sorrow, anxiety, fear and worry.  But Dustin and I both agreed when Liam was born and when we found out about his heart, is that Liam is ultimately God's child placed in our care.  Thankfully, we both shared the belief that God is in control and no matter what, we could get through this, together.

I think the hardest part for me was learning to navigate through my own needs and feelings, while still being the mom Liam needed me to be and the wife Dustin needed me to be.  I had to learn to be sensitive to how Dustin processed and responded to the daily challenges we faced.  But I definitely think our marriage is stronger because of those challenges.  We just took one day at a time, and eventually made it our new normal.

I have read time and time again that families going through tough experiences, especially something so medically fragile with their child, some friends and family just kinda disappear and aren't there to support the family for one reason or another.  We have been very fortunate to not have instances in our life of this happening.  I think the only issue we deal with is having to keep Liam healthy by being selective about where he goes, for germ purposes.  We've missed a lot, especially at our church, because we can't risk Liam getting sick, especially during the winter months.  So, if I had to say our friend and family relationships have changed, I guess I would think it's because we couldn't be a part of them physically.  This is our second "lock down" season and it's been hard.  I just wish we could spend more time with everyone.  But I also know that this is hopefully a temporary state we are in and once Liam is older and stronger we can let loose a little bit. 

Our family has been very supportive.  Especially my parents.  My dad cared full time for Liam for a year while Dustin and I both worked full time.  This was a huge blessing for us, and I can never thank them enough for that choice they made to do that for us.  They have always been a source for encouragement, mentoring and love.  And both Dustin's and I's brothers, sisters and in-laws have been there for us every step of the way, in one aspect or the other.  We have truly been blessed with great friends and a wonderful family.

The most difficult thing I have struggled with lately is fitting back into a "normal" society and way of life.  For me, we have been somewhat secluded and withdrawn from the things we did before Liam was born.  Things are just so different now and I feel like a completely different person sometimes.  It's almost as if I am trying to find my way in my new identity. 

I have especially found it more difficult when meeting new people, since Liam has a few more things going on medically than most kiddos.  I never know if I just need to delve into the whole history about Liam's condition or not say anything.  For example, I took Liam to the park one day a few weeks ago and another mom was there with her 1 year old who was already walking.  We started chatting about how her son just started walking and then she brought up Liam's helmet, said her friend's daughter had one, etc.  I just felt very awkward, as if I should say all these reasons for why Liam is the way he is  (why he isn't walking by now, why the helmet, why no sippy cup when it's hot outside, etc.)....I had never really experienced that before.  I want to share his story with people, but then again, I don't want to overwhelm people and make them feel sorry for us either.  So, I'm also wondering, what do you other heart moms do?  I guess since we don't get out much, I have protected us from people's opinions and explanations, so it's hard confronting this when it arises.

All in all, relationships in our family have grown stronger through our experience as a heart family.  We had no idea what to expect when we first heard those words..."There's something wrong with your babies heart..."  and as much as I hate CHD's, I can't say that we haven't been truly blessed by its byproduct of developing new friendships and new, stronger bonds.  My blog friends and new heart families I have met are a testament to that.  Thank you all for hanging in there with us on our journey....just know we couldn't have made it this far without ALL of you!!


  1. Great post!! So positive!

    I pick and choose by situation if I tell someone about Mason's heart. I have to force myself to view it as spreading awareness instead of getting annoyed at lack of knowledge. I'm easily annoyed, LOL. I've chuckled at God for putting me in a position to be exposed to so many people. He knows what He's doing, LOL!


  2. Beautifully said Tara! Thanks for joining my blog event!

    On what to say to people, I have found that most are very understanding and in fact are willing to ask questions instead of shying away. However, as Neysa said above, sometimes you have to pick and choose when it is appropriate to share and when it's not. Usually I can pick up a vibe on people.

    I agree, it is hard rejoining the world after CHD. It's not easy and at times I feel like I just don't "fit" into the regular world anymore because my views have changed so dramatically in comparison to others. Some people I feel comfortable around to be myself....heart mom and all....and some I feel like I have to put on the "Hey I am FABULOUS all the time face". Make sense? It's a struggle and one that I can only pray will come together some day.

  3. CHD runs in my family. I don't know what you're going through - but - I approach it, maybe.

    God bless you and your little star. He's beautiful.