Truly Inspiring

I've shared the blog I follow, Inspiring Hearts, with you all before. But, recently this was posted and it really inspired me and validated in my head the way we have been raising Blake. Many parents of HLHS babies isolate them, become overprotective of them, and treat them like they are different. It has always been important to us that Blake feels as much as he can like a normal kid, and sure I may let him get away with a bit more and baby him a bit more, but I'm just going to chalk that up to being the youngest! ;)
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Brooke
24 years old
Hypoplastic Left Heart Syndrome (HLHS)
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven’t had a chance to? I would like to say that kids with CHD are normal. I think a lot of people feel like we needed to be treated differently or feel sympathy for us because of our medical history. What people don’t realize is that what we go through with our hearts may seem unusual or extraordinary to other people is completely normal for us. Parents of CHD kids need to remember this and treat their kids like they didn’t have a medical condition; they should have the same expectations and aspirations for them as their kids without CHD.

Give a short description how you perceive your life or felt about as corresponding with the following three words

Past: Growing up I was always a little different than kids my age; I was always more mature and had a hard time identifying with kids my age. I guess when you go through life-threatening events like heart surgery, even if you were young and don’t really remember it, it changes you; you learn not to take life for granted.

Present: Right now, my husband and I are living in Idaho while I’m finishing my graduate degree in Speech-language pathology. I’m itching to get out of school and start my “real life” but I feel incredibly lucky to be here, even if we’ve had to move far away from family and friends. The challenges have been well worth it.

Future: My husband and I are hoping to start our family in the next couple years. I was very excited to hear from my cardiologist that I could probably carry a child. I am looking forward to having a family and sharing these experiences with my friends and family.

If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be? I would want to tell those children that you are special. Your experiences will shape you your whole life. Never be ashamed for what makes you different. You bring so much hope to people who come after you.

What is or are your greatest accomplishment(s) in life (so far)? I would say my two greatest accomplishments have been getting into graduate school and marrying the love of my life, Matthew.

What has having CHD taught you? Never take life for granted. Don’t sweat the small stuff.

Briefly share your story of growing up with CHD Growing up, my parents were honest with me about my condition and what it meant for my future. My mother taught me that nutrition is extremely important for someone like me. Also, my mom and I were involved in advocacy; talking to parents of babies with CHD and participating in heart walks. I did a commercial for the American Heart Association and was in one of their newsletters. Today, I still talk to parents of children with CHD and it’s amazing to see how much hope it brings to them to see an adult with CHD. I am also doing my master’s thesis on the language development and play skills of kids with a history of early corrective heart surgery (ECHS).

How has having CHD changed your life (other then the obvious health issues)? It has taught me to value every day of my life. I think a lot of people my age are unaware of their own mortality and tend to waste this time in their live or at least take it for granted. I consider CHD to be a great gift. I would not be myself without it.