Sunday, April 28, 2013

Dear Stranger

Dear Stranger,

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


  1. Amy how beautifully said. I too had the pleasure of coming across an ignorant, insensitive piece of work just after Julian died. My neighbour paid us a visit to show her respects and at the time thought it appropriate to tell me we would have been better off if Julian had died at birth. Unfortunately at the time I was too emotional and shell-shocked to really respond. All I said was 'But then we never would have known our special little boy.' But those hurtful words have stayed with me and often play on my mind. I would give anything to have one more day with Julian, the thought of wishing him dead from birth is just beyond anything anyone with a heart could think. I know we have been given the gift of perspective through our journeys but if people actually took the time to get to know our babies and to let their hearts be opened up with their love, they too would be given a little of this gift. As you say, it's easier and less scary to stand back and judge from afar. Antonella xxx
    PS - Our babies need us to be 'Dragon Moms' from time to time, so don't ever be ashamed of it!

  2. Well said Amy. You and your family are stronger because of your experiences with Gabrielle and I commend you for all your strength and positiveness. I am always so encouraged when I read your blog and find inspiration in your strength. Sweet Gabby is so lucky to have such a beautifully strong Mommy such as yourself. Hugs to all!
    Love, Ames xoxo

  3. Amy, I'm sorry that you had to hear that comment. Although I haven't received a hurtful blunt comment like that, I get looks that say the same message, loud and clear.

    I have to admit I've even thought it once or twice. If she didn't survive the birth she wouldn't have to go through this life that is so unfair. Our job of maximizing their short lives is both a privilege and a curse.

    Don't pay too much attention to thoughtless people like that. That comment proves that not only does this person lack empathy, this person has little concept of reality. In what country (or planet) can a parent extinguish a child because he/she is difficult? I hope next week is better.

  4. You were chosen by God to raise Gabrielle-she was given just to you, because only you could represent her to the world. Only you would not measure her value by days, by milestones. Only you were open enough to recieve what she had to offer. It is a job that only a very few are chosen to do. My heart breaks that there are those so ignorant who do not recongize that ones contribution to this world is not measured by the days we spend on this earth. WE are all a gift from God, we all have a purpose to fulfill-even if it is only know to God. Here is a poem -author unknown- that brings this home. Sorry this post is so long. But you are truly chosen by God.

    Do not judge a song by its duration
    Nor by the number of its notes
    Judge it by the richness of its contents
    Sometimes those unfinished are among the most poignant…
    Do not judge a song by its duration
    Nor by the number of its notes
    Judge it by the way it touches and lifts the soul
    Sometimes those unfinished are among the most beautiful…
    And when something has enriched your life
    And when it’s melody lingers on in your heart.
    Is it unfinished?
    Or is it endless?