My friend told me what you said the other day while sitting at the park. In her dear attempt to try and relate to the heartbreak we feel somedays, she shared what you had to say: "Why do they keep her alive?" and "what about her other healthy kids?".
You know, I know people judge and make comments about people like our daughter Gabrielle, but a part of me thought that there was no way people could really think those thoughts strongly enough to voice them. But you, wonderful stranger, have shown me that, yes, there are people out there who are so ignorant that they are simply incapable of empathizing with different and difficult situations.
I'm wondering about your comment about us choosing to "keep her alive"? I'm actually very curious about this. What do you think parents of special needs and very sick children have the option to do? Do you recommend a pillow over her face? I know Gabrielle was transplanted, but they didn't transplant her with a 'die' switch. "Ok Gabrielle, time's up, goodbye!"
I feel sad that you have a heart that has never experienced the kind of joy and pain that we get to experience. I strongly encourage you to open your heart and embrace all people on this earth! Yes, Gabrielle may look different from the outside, but she's human and she feels, thinks, and is - in many ways - just like you or I. We don't all come in perfect little packages. Gabrielle has taught us a very important lesson that people like you may never learn: it's what's inside that counts.
I wonder if you would continue to think these thoughts if you volunteered once a week at a children's hospice for just a year. If you learned to laugh and love with these sickly kids as much as we do. To watch them die. To watch them prepare for death. My guess is that you wouldn't do this. My guess is that you would be too afraid of the unknown to even consider it. If I am wrong, email me one year from now.
Your other comment about their "other healthy boys" was also interesting. Yes, our life is different. We don't have many luxuries that most people in our community have. We cannot travel with our daughter. We really can't leave our home at all. Day to day living is challenging. We rely on our nurses. We need help from family and friends. We have come to rely on a children's hospice to catch our breath and momentarily recover so we can function in a healthy way.
Our lives are not like yours because of Gabrielle's challenges. But not only am I keenly aware of just how much we do have, I'm also aware of how enriched our lives have become since she came into our lives. But, most people don't realize that. Most people wouldn't realize how much our healthy boys are learning and benefiting from having her as a sister. Most people choose to complain about what they don't have. Some people, like you, judge from afar. Not my boys and not this family. We have learned to embrace life.
Of course no parent wants their child to suffer, to experience pain, and live a life like the one Gabrielle has been given. Of course I want her to be healthy. Of course a part of me hopes she will pass if her body causes her too much pain. If I could trade places with my daughter I would in a heartbeat. Unfortunately, that's not the reality. Reality is reality. Reality is that I cannot change my daughter's illness. I cannot cure her. All I can do is love her and be the best parent I can be.
'Dragon Mom' Amy