Recently, I was reading a blog post from another heart mom. Another mom whose story was very much like mine, yet ended very very differently.
Our journeys shared a remarkable amount of similarities. The biggest difference? Her beautiful sweet baby girl passed away before the perfect heart became available. She passed away the day before we got the call that would save Katy’s life. ( I didn’t learn of her passing until days later)
Needless, to say I struggled with the WHY?
Although our girls prognosis was the same, they were living a very different life. Katy home thriving on Milrione and living a pretty “normal” life.
The other heart warrior princess living in a hospital… fighting one thing after another. On the list…off the list. As much as we struggled with the emotional rollercoaster of waiting for a heart, and living in fear of losing our child. I cannot begin to imagine what it was like to be living in that environment.
It wasn’t until I looked at Christmas pictures of that beautiful little girl… opening all her gifts… many of the same gifts our Katy girl opened that same morning, that it hit me. We may have the same prognosis, but please god please, that sweet heart warrior princess needs a heart and she needs a heart NOW.
That was a long intro to the purpose of this post.
The reason for this post is that her blog post made me question our decision. We decided during our 18 week ultrasound when we learned of Katy’s special heart that we would do whatever we could to make her better. We believed with all our hearts, that our little girl was meant to be. ( After years of infertility and 4 miscarriages, when you have a viable pregnancy… you know they are meant to be) I was mortified with the option of termination… I sometimes see that doctor and I want to say “Hey, look at this ROCKSTAR!! Do you still think we should have terminated!” But, I digress.
You see while reading that other mom’s recent blog post… she talked about how her child was now at peace and whole in heaven and no longer suffering. She wrote how her daughter would not have to face a life of pokes, and procedures and medication, and fear of rejection, because we know transplant is not a cure. She wrote that she regretted not choosing compassionate care earlier.
Which leaves me wondering did we do the right thing?, Is this the best life for Katy? Was this a selfish decision, because we could not bear to live a life without her?
As many of you know Katy is struggling with keeping normal levels of her antirejection meds. They keep sky rocketing for no reason and when that happens Katy has bouts with nausea, vomiting and diarrhea. All of this means more blood draws and more doctors appointments. Katy’s quality of life is actually worse right now then it was pre transplant. Now I know that once we get this figured out (this time) she will be out playing SOCCER next week… until it happens again.
Obviously we had to make this decision for Katy, and I fear that when she is old enough to fully understand she may not agree with our decision. Will she resent us and our lifelong decision?
I don’t know the answers to those questions and only time will tell.