Photo unrelated to post -
Claire modeling her new PJs, purchased on a recent trip after she had an accident in the ONLY pair of PJs I had packed for her. What was I thinking? I like to live dangerously, I guess.
Her question--posed out of kindness and genuine concern--got me thinking.
I answered it honestly: "I don't know."
But having thought about it a little more, I think the answer "I don't know" is too simple. The truth is, it doesn't matter to me. What I mean is this: No one knows what the future holds for Claire, but no one knows what the future holds for anyone.
I don't know whether Claire will live a long life or a shortened one. I don't know whether she will ever talk or walk or even have head control.
What I do know, however, is that for the rest of my life, I will love and care for Claire with every ounce of my being. I am committed to providing her a life that is comfortable and joyful. I will do what I can to help her become more independent, and I will give her every opportunity to reach her maximum potential, whatever that means. I will make all decisions--even the hard ones--with Claire's best interests in mind.
From that perspective, her prognosis is pretty good. I mean, many children grow up in love-less homes with parents who do not fully support them. Kids are abused and even abandoned more often than I would like to think. But from a medical perspective, they would not be given a grim prognosis. Along similar lines, many people suffer from loneliness, depression, and addiction, even if they are otherwise physically healthy.
What I would really like to say is that even though Claire's prognosis is unknown, my devotion to her is unlimited, and for that reason, I am optimistic about her future.
I don't know how to distill this expression into a brief, meaningful response to the next person who asks that question.
How would YOU answer?
I would simply and graciously smile and say that Claire is holding her own. We live each day to the fullest. We don't look back at the what if's or worry about what comes next. She is the love of our life and she feels our love as well. Each day is a blessed day that God has given us to be with her and this journey, Claire's journey, leads us on. Betsey
ReplyDeleteI sometimes reply with, "However long I get to keep him." when asked the same for Brayden. Other times I share the original prognosis, that he would only live a couple of weeks... and he's four years old ;) No one knows and you certainly can't drive yourself in to a fit of worry by trying to pinpoint an expiration date when asked ;)
ReplyDeleteI get this question all the time. I also answer with "I don't know." I also explain that Georgia's brain anatomy is unlike anything doctor's have ever seen (her MRI has even been presented at a conference of radiologists and neurologists). According to her brain scans she shouldn't be eating and breathing on her own but she is. I generally explain that kids like Georgia generally have a shorter life span because of things like pneumonia but she's never had that. We just live each day trying to give her as many experiences as possible. We treat her like a typical kid and just adapt things for her.
ReplyDeleteAmy, this touched my heart this morning. I believe you have already given the best response you could give: "Claire's prognosis is unknown, (but) my devotion to her is unlimited, and for that reason, I am optimistic about her future."
ReplyDeleteLooking forward to seeing Miss Claire next weekend! :)
I have also been asked this question, about Claire, many times. My answer is, "I don't know and I'm not sure if any one does. What I do know is, she is healthy , loves to eat and cuddle, she is absolutely beautiful and we delight in any and every small achievement that she makes. She is the light of our lives and we love her to pieces."
ReplyDeleteAmy,
ReplyDeleteThis was really touching. You and Brad are wonderful parents and you are blessed to have Claire, as she is to have you.
Claire's prognosis is unknown to us, but God knows exactly what's to come. He is still in full control and I'm not giving up hope EVER. I still believe in miracles. Amy you are a wonderful mother and Brad is a wonderful father. I couldn't be any more proud of either of you. Love you all.
ReplyDeleteNana
Beautiful <3
ReplyDeleteBeautiful post! My answer for my daughter is always, "I don't know but she is doing amazing." Because no matter what she is doing, it feels amazing to me.
ReplyDeleteI love this Amy!! Wonderful post! My sentiments exactly!! I feel the same way that Matthew's struggles may be medical, but we all have struggles. How do you quantify one as worse than the other?? Our children are loved and are able to give love. We live in this special little world of "Holland" that has taught us things we would have never been able to wrap our minds around had we not been blessed with these beautiful kids!
ReplyDeleteBeautiful. :)
ReplyDeleteSimilar to Alicia, I will often share that Bertrand's life expectancy was 2-3 years--he's now almost 5 and doing great. As long as he's happy, we're happy.
And I can tell Claire is certainly happy. :)
This is so beautiful. Your daughter reminds me of my son. I couldn't have written this better myself. I'm so blessed to have my son and I cherish every moment with him, I'm so grateful to have him in my life. You're an amazing mom.
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