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Friday, April 11, 2014

Swim Lessons

Usually, I don't notice it. Or I adapt, or ignore it.

But sometimes situations show up that just make me so painfully aware of our differences.

For me lately, it is Connor's weekly swim lessons.

The kids that walk around barefoot on the dirty tile floor, wet with pool water, with little fear of germs or infection. Babies in tiny bathing suits tolerating the cold water without a thought of discomfort or sickness.

The warm air in the pool area means that I have to dress Brenna in short sleeves and take her hat off, her hair sticking out in sparse patches and greased up with Aquaphor. I'm constantly worried about how hot or cold she is, and all the while, I'm thinking "for the love of all that is good, please DON'T TOUCH ANYTHING."

It's hard to shake off the stares at swim lessons. The wide-eyed watching from other kids, too young to know that they should look away politely. The second and third glances from other parents who don't know that I notice out of the corner of my eye.

There are very few situations that I think "I wish things were different." But I look at the pool with envy, and I wish that I could throw a suit on Brenna and splash around with her without a care about germs or water temperature. It's simple and not important in the grand scheme of life, but it's there, that wish.

Swim lessons make my heart just a little sadder. Some weeks, I just avoid everyone for fear of tears falling if someone looks at us the wrong way or says something about Brenna's skin. So I usually look down and don't meet the eyes on us.

I wrestled with myself about whether I was feeling shame, and I am not. I'm proud of my daughter and I wouldn't change the way she looks for anything. I would make her more comfortable if I could, but certainly not change her appearance. I love the way she looks, because it's her.

Sometimes, though, I just feel extra sensitive about it all…just a little more worn down by life with a rare disease, just a little more aware of the stares.

There will always be swim lessons in our life - situations where we are just more aware of our differences and a little sadder about our challenges. It is my hope to instill the confidence in my kids to shake off the swim lessons… to move forward with their heads high and meeting the eyes of others around them with kindness. And so, I will try to do the same.

17 comments:

  1. I wish I could give you a hug and I want to thank you for sharing your story and your feelings. My daughter is 18 months old and has a rare skin/neurological condition (neurocutaneous melanosis) that's pretty visible. As the weather starts to get warmer, bringing on the need for short sleeves, more time outside, etc., I get anxious about the very situation you describe. I love my little girl more than anything, but there are definitely days and situations where I don't want the reminders of her differences.

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  2. My 14 year old son suffers from X-linked Ichthyosis...a MUCH more manageable form of the disorder, however I understand EXACTLY how you feel. We live in the Northeast, where winters bring dry cold air that makes his skin turn almost black and crack until it bleeds. As much as we try to cream, his skin will ALWAYS be a concern. At 14 he is aware that his skin is different and wears pants most of the time and socks ALL of the time. I have struggled with the question of embarrassment and have decided that I am less embarrassed for myself and more concerned for his feelings. Of course, people will stare, and you might even feel like they are thinking that YOU have done something to cause this - at least thats I how I feel sometimes. But more times than not, I feel sad for my son. Why is this HIS struggle? He is such a great kid, he doesnt deserve this! But in the end, I look at him, and love him with all my heart. And what I have discovered, is that HE DOESNT CARE nearly as much as I think he does! He has great friends, and he is a happy, HYSTERICAL kid who laughs and enjoys life. So what/who else matters? No one else. You made a comment in one of your posts that REALLY touched me...you said something along the lines of - this isn't our struggle, it is THEIR struggle. We are only here to support them and love them. Ignorant people are going to stare, they cant help it. But by you sharing this post, you are providing people with information that allows them to understand this disorder and through that, you are supporting and loving your daughter. You AND SHE are an inspiration to me. Please dont ever feel sad - she is a gift to you, and you both are a gift to the rest of us.

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  3. As always Courtney, your writing and thoughts are an inspiration to myself and others every day. It seems I learn something from you in every blog post. Keep up the good work and big hugs to your family. Brenna is a lucky little girl to have such a smart, thoughtful, and caring mommy!!!

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  4. I have no idea what you go through, but I can see how that must be trying. The thing is, exposing Brenna, and the world, to something different...well, maybe we can all learn to be a little more accepting. And kids will always stare. I have 2 with hearing aids-and I always told them that just being who they were, others saw that there is nothing different. They are kids-like Brenna-and they run, have fun...everything. Easy for me to say, but you have to deal with it. Know that Brenna seems to be to be a fun, lively and oh so happy. You are doing a GREAT job!!!!

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  5. It is hard, isn't it? I thought I would be used to stares and comments because we have eight children, but when our seventh son got his wheelchair comments moved to a whole new level. I've had people ask very rude questions, and it is usually the adults. They often assume he's mentally handicapped too and he's not, but the way they talk to him is awful. He just happens to have Spina bifida and can't walk. I've even had people who comment that we surely must be done having children now because we have a disabled child. They're usually shocked when I tell them he's already a big brother and we would welcome more than our 8 children happily.

    And what used to be simple situations are not so simple. For example playing at the church nursery means daddy or I have to stay with him because when he's on the floor (Not in wheelchair) someone could step on his legs and break them and he wouldn't feel it. When he's in the wheelchair there we have to help pick up things he can't reach and clear the floor so he can cruise around without being stuck in the toys kids dump (wheelchairs don't deal well with things on the floor). Going places means we have to consider wheelchair accessibility (homes usually are not wheelchair accessible, playgrounds often are not, etc).

    I love my son, he's one of my favorite people. But sometimes I really hate the stares and the comments.

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  6. Brenna continues to inspire and teach us everyday, and for that I am thankful!
    -Katherine

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  7. Aww this brought tears to my eyes. I am trying to do exactly the same thing. It is so hard when people stare. I have a real problem with other children grabbing my daughter's arm while playing. I know they are just curious but it really bothers me. She was born without her left hand. I just try to ignore it and move on as well but man is it tough! These girls will show everyone how amazing they are. Our families(children) will see past other's differences because they will have learned we all are a little different and that is what makes us special! :) Beautiful post!!

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  8. You are such a strong person and this is a tough situation. Everyone of those parents should have brought their children over to you, introduced themselves to you, Connor and Brenna, instead of staring and making a bad example for their own kids. All children are perfect and beautiful because of their differences and parents should make an effort to teach that value to their kids. My heart breaks for you because of these people making you doubt yourself. Continue to be strong and sweet. "Inward Screams and outward Smiles!" LOL
    -Jen

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  9. I have a 4 year old daughter who is just now learning that people can be different, and look different. I am teaching her that it is just the way God made them, and we are all special in our own way. Would you be willing to give us advice on how to handle these situations? Maybe tell us a few things you wish would take place at swimming lessons to make you feel more comfortable. I hope that doesn't sound rude or disrespectful. Maybe by doing that you could help us have a better understanding of how we could make those with differences feel more comfortable in different situations. I love following your blog, and I think both of your children are precious! I just want to squeeze Brenna! She is so cute!

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  10. Keep your head up and your eyes to the Lord. She is a beautiful child of GOD!

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  11. Brenna is so blessed to have you for her mommy!

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  12. Brenna is so blessed to have you for her mommy!

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  13. I so understand what you wrote. My daughter was born with a very large black birthmark covering her forehead, all around her eye, down her cheek and on her scalp. We have removed a lot of it the last 2 years, however there is still quite a bit around her eye. What I wouldn't give for her to be able to go out in public and not have a single person ask what happened to her eye. Because she is getting older (4.5), the people now ask HER, not me anymore, which means she notices every.single.time. I remember going out into public with our son, when he was born, and I couldn't get over how "easy" it was, compared to when our daughter was born. That made me sad for her as she will have to deal with the public all her life. But I refuse to keep her home just because people can't handle seeing something "different". Education is key - which you are doing such a fine job of. The more we educate the public, the more accepting the public will be. If they are not educated, they are driven by fear, hence the looks. Our kids are perfect in every way because they are perfect for us. God knew that, which is why it is such a privilege and honour that we are blessed with the children He has created and placed into our arms.

    I wish you all the best dealing with the stares and comments. It is not easy all the time, gets old real fast; I have come home more often than not with teeth marks on my tongue from holding back a retort to people. However, retorts are not what I want to teach my daughter. I want her to know how to handle it in a respectful and positive way (even when it's not shown to her), and that starts with us, her parents. I know, tough to do, but remember that God who created our children? He also will give us the strength, courage and wisdom. Keep leaning on Him!!

    Blessings!

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  14. Dear Courtney..for the record, II just want to say that I am extremely proud of You, Brenna, Connor, Evan and your entire family. I know how it's like to get the annoying stares- my sister has down syndrome and my brother was born with spina-bifida and one of his legs shorter than the other. Of course, we are human and it bothers us but, know always that God is with us and you. Brenna and your family are so unique and special that in reality, it's the people who are staring at you are the one's who are really envious.

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  15. Courtney, quit making this old man cry!

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  16. God is holding your load and is here in every word you wrote! Thank you Brenna and Courtney!

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  17. Thanks for posting this! Your courage is inspirational. Brenna is lucky to have you as her mother.

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