Unfortunately it typically takes a tragedy or crisis to bring out the best in people. Even sadder is that sometimes, those circumstances bring out the very worst. Today another heart family lost their baby and I was really touched to see another Heart Mom who lost her baby earlier this week reach out to the Mom publically to share her grief and offer her thoughts of comfort and condolences. On the complete other end of the humanity spectrum there were attacks launched on this poor grieving family questioning the type of medical care that they sought and undermining the decisions that they made for their child.
While no parent chooses a life of medical or developmental challenges for their child, I think the vast majority of us do make decisions with the child's best interests in mind. They are the most difficult ones in life, to seek the best medical staff or make the heart wrenching choice to forego treatment if the quality of life is nothing they would choose for themselves. (and of course everything in between those two extremes)
I can only speak from our first hand experience with Olivia, but we try to weigh all the positives and negatives involved with making our choices when it comes to her. Whether it be her care, what sort of food we give her, how and where she sleeps, you name it - we've probably put some thought into it. Her heart anatomy is not within our control, but all the other variables that play into her general health are and we take our jobs seriously. I imagine the same is true with all the other families out there who's blogs are linked to ours and within the heart community that embraces us.
When we (the parents of a special needs or medically challenged child) make a decision that you don't like or don't necessarily agree with, just take a step back try for a minute to put yourselves in our shoes and think about how we have their best interests foremost in our minds. Now that I've shared my two cents - I'd like to give a very special kudos to my cousin Mari who got her very first flu shot last week. She totally doesn't believe in them but she proactively went out and got one because she knew it was a must to Brian and I for anyone that wants to visit and interact with Olivia. I laugh, because for years she and I debated about them and now with Olivia she actually beat Brian and I to getting it done. That's the perfect example of the type of support that we all could use a little more of in our times of need.