Jun 9, 2011

Looking Different

*This is the post I was drafting when the news of my friend Karin's passing came.  She will be terribly missed.
Having a child with craniofacial differences is hard. People don't mean to but they judge. There is an assumption that people who look different are different. Even having a child who looks different, I have to fight against the human instinct to judge by appearance in the privacy of my own mind where no one else hears my thoughts. Such as......

Last week I went on a field trip with Ainsley's classmates, many of whom have special needs. I know and love my child in a way that others do not, simply because I am her mother. I know her life has worth, purpose and meaning. I also know that every mom out there feels the same way. And it's true. All life is precious and holds value.

I found it interesting to see reactions of these other special needs moms to my own child, who has a trach, feeding tube, is non-verbal and not walking. And from our conversations my impression was that some of them felt their own child was better off. In case you haven't met her, Ainsley is a happy child. She is a joy to be around. I can't tell you how many therapists, doctors, nurses, school workers and the like have told me how much they enjoy her. She has been through so much but she has such love for life in spite of it all. Other children may be more physically able but Ainsley's spirit shines. If I had to choose I would choose that. But as I thought about it I realize that too is a judgement. My child is no better or worse than another. More importantly there is no need to compare. We are each unique and valuable, with strengths and weaknesses. In case it's not clear I'm not just talking about those with "special needs".

And yet. Ainsley's life is not made easier by the fact that she looks different. I know that people assume things about her because of what they see.

Did you know this is what my baby looked like when she was 9 months old?

When people notice Ainsley's eyes they do not consider that her eyes look the way they do because of surgical results. Sometimes I feel like I have a hard time even getting the surgeons to acknowledge that fact and have come to appointments armed with photographic evidence. So it was with dread that I set out to her appointment on 6/1 with the occuloplastic surgeon to discuss the 6 months post surgery results. Even though it's been that long I still feel a stab in the gut when I look at her eyes and see how much of her lids were unexpectedly cut away, about 4-5mm of her upper and lower lashes. Although the surgeon didn't forewarn us that he would being doing that (beyond the scope of what we consented to) I understood the logic of his reasons why he felt it had to be done in the moment. I hate it, but understand it. And if I can find a positive it is that Ainsley has such thick beautiful lashes that I suppose only I will notice all those that are now forever gone. Somehow I was able to put on a semi-friendly face and voice my opinions and what I wanted done in a quiet factual manner and most surprisingly the surgeon agreed with me. I was shocked. Steve and I left looking at each other in disbelief that it could have gone that easily.

For several years I have said that I believe her brows are too low as a result of her 2nd craniofacial surgery because of how much bone was moved around. That is one of the reasons why they did brow implants in 2010. It helped a little, but the implants don't extend far enough toward the ears to lift the area that needed it most. The surgeon agreed that the eyebrow (hair) is in fact below the brow(bone). He is going to write a letter to the craniofacial surgeon recommending a brow lift. In addition one of Ainsley's eyes was stitched together tighter than the other and it has created a little pinching at the corner causing the eyelashes to turn in on each other and that eye looks a little smaller than the other. Though the surgeon offered electrolysis I really don't want her to loose another s-i-n-g-l-e lash, so he good-naturedly agreed to slit the corner during the brow lift (if we do it) to release those lashes.

In a stroke of extremely good fortune I was able to snag a canceled appointment for June 13th (Monday) which means not waiting months. The real reason for the appointment was that I've noticed Ainsley's head shape changing, and there is a risk that the bone that was previously fused, though operated on, will not allow proper long term growth.  Also, I think they would want to see the eyelid surgery results. Now we have the brow lift to discuss as well. Monday we could be discussing surgical plans for this summer. After what we've been through I am nervous. Plastic surgery carries risk and results are not guaranteed. You certainly don't get to pre-view the results. I'm so afraid another surgery could "make things worse" but at the same time I am not satisfied with the current results so if the craniofacial surgeon wants to do the brow lift we probably will.  I hope she doesn't need another reconstruction on top of that. Having your child's skull removed and cut into pieces and rearranged like a jigsaw puzzle is not fun.

We have a busy weekend coming up, a new speaking valve and ortho surgery follow-up tomorrow, a poker game, a baseball game, a family graduation, a ballet recital. I'm tired just thinking about it but will try update early next week to let you know what happened. I hope you all have a more relaxing weekend than I will.


  1. I can emphasize with you. I too have a child that 'looks different'. Severe brain malformation, early hydrocephalus (and spina bifida)have left her head narrow at the top, and elongated at the back. Now that she has grown hair, it is not so noticeable. When we first fostered her at 5 months old I was in a supermarket with her; a young girl looked at her for a long time, then said "I think your baby is ugly!" I could understand why she said that, so I just said "Well, I think she is beautiful; and I think you're beautiful, too!" Her mother was very embarrassed and dragged her away. Yes, she looked different, but she too, has such spirit; as a young child her laugh was so magnetic and irresistable that people would turn around to see who was laughing! We don't get as many laughs now; she also has an encysted fourth ventricle which presses on her atrophied brain stem, causing severe pain, for which she is medicated. But I think some of these really special children have such wonderful spirits; when she meets a new person, she asks their name, then says: "..... I really like you." A perfect way to get people wrapped around her little finger. She is now 8 1/2 years old, and unfortunately her condition is deteriorating, and our aim is to help her to be as happy as she can be. I read your posts with interest; I know that the physical appearance of a child does not define who they are. Ainsley is such a brave, beautiful little girl. I hope the proposed surgery will give the results you desire. With best wishes,

  2. Susan,

    You already know how I feel about Ainsely; when looking at someone through eyes of love you just see beauty. I have always seen beautiful Ainsley.

    I think you and your family is wonderful and you know with being Ainsley's Mommy, and also Ainsley's best advocate you will make the right decisions for her.

    I will be thinking of you on your up and coming busy week and I will say a prayer.
    Coffee and chit chat when you are ready.
    Much love.

    All the love in the universe from me to you.