Walk the Line

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I feel physical pain when I look at this picture.

This is hard to write about.

Tonight I walk the line.

Tomorrow I probably will too.  I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.

I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.

When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time.  When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate.  When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)

When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned.  When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt.  When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside.  I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon.  When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed.  I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress.  Until, it’s not anymore.

When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy.  Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.

But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”

I just keep walking that line.

The line between celebration and worry.  The line between pride and guilt.

I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true.  But the other side exists. And it can be an ugly, dark spot to step into.

That is why I walk the line.

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Striving for Celebration

 

 

13 Comments on Walk the Line

  1. Kerri
    February 4, 2014 at 2:24 am (4 years ago)

    Oh my I feel you. I FEEL you. I walk the line. I fall over it. I fall under it. I try to rise above it. It is so freaking hard sometimes. That repeated ‘hi’ might be typical toddler behavior. But we don’t know because we do not have typical children. We have our children. Whom we love. Whom we break for and whom we would fight any bully in their path.

    I walk the line, too. Nice to know we are not alone.

    Reply
  2. Erin Putman
    February 4, 2014 at 2:40 am (4 years ago)

    Kerri, thank you so much for your comment. You are SO right- it could be typical behavior, but we don’t know, do we? Even if we see another child doing the same behavior, we will still wonder, still doubt, Thank you for your incredible insight.

    Reply
  3. Wendy
    February 4, 2014 at 3:01 am (4 years ago)

    I feel physical pain when I see Evan with a sad face. He is the sweetest little guy with the happiest personality. While you walk the line, Surrender to the joyful side! He is a beautiful gift.

    Reply
  4. Nicole Fuehne
    February 4, 2014 at 3:30 am (4 years ago)

    Yours words are exactly my thoughts…every day. Beautifully written and thanks for making me feel that I’m not alone in these thoughts♥

    Reply
  5. Jamie
    February 4, 2014 at 3:41 am (4 years ago)

    well put sister. I like that you say “walk the line”. I often feel so guilt ridden when those negative thoughts seep in that I feel more like I’m falling over a cliff. They can really snowball. It’s an important point that I’m only a step away from back in perspective. Comparing Evan’s development to his development is a great place to be, btw. You do not wear blinders. But respecting his pace and measuring progress against where he’s coming from instead of where others are coming from is so much more helpful. Do I stay in that place? Heck no. Do posts like this help me get back to that place? Heck yeah! Thanks mama!

    Reply
  6. Todd
    February 4, 2014 at 1:35 pm (4 years ago)

    I tend to be more of a “If a person feels weird about something Evan does that is not harmful to himself or anyone else, the ‘problem’ is with them, not him” kind of person.

    We all have our idols: to be considered by others (and/or ourselves) as smart, loved, respected, accepted, obedient, powerful, etc. When we don’t acknowledge them, we tend to do what it takes to worship those idols with our thoughts and actions. Many times those thoughts and actions inflict a variety of pain to others.

    Does Evan have the capacity to know that he shouldn’t say “Hi!” twenty times? No–at least not yet. Will he? Probably with a lot of work, but maybe not. Does a person who uses the term “retarded” as a non-clinical adjective have the capacity to be more empathetic to the plight of people who might not have the capacity to cope in this world as well as most others? Absolutely. That person is most likely trying to feed the beast within which craves things like social status/cachet for saying “funny” or “edgy” things. Who has the problem in this scenario?

    The kid that bullies might have been bullied at home and feels a need to dominate because he or she has been dominated or craves negative attention because they get no positive attention. Other kids might not intervene because the worst thing a kid can do is stand out from the herd to be the next target for the lions.

    When it comes down to it, I would hope that Evan has an easy path in life. For better or worse we choose to spend our time with the people who have the greatest capacity to make us feel satisfied and fulfilled. I feel pretty confident that Evan will work that out in his time. He’ll get hurt along the way the same way we all probably were hurt at various points in life by people who wanted to worship their own idols. Until he gets past that, his mom and I will be there to try to fill back up his love tank and let him know that sometimes when people are mean it’s because they are hurting more than we can ever imagine and they need to get rid of that hurt by making others hurt. Tough lessons to teach/learn.

    Reply
    • Karen
      January 4, 2015 at 7:40 am (3 years ago)

      The line you find yourself on is also called parenthood…. We can always want the world to accept our children their uniqueness, their blessed gifts and their challenges…..but as well stated our children’s bucket will always filled by those who love them and grateful for having the privilege to help us understand that the line is drawn to help us appreciate the full meaning of living : )

      Reply
  7. Katy
    June 2, 2014 at 9:34 am (4 years ago)

    Hi Erin! Thank you for writing this. I just had an almost identical conversation about this very same topic with a close friend…and it was after a very long week that ended with an event in my oldest daughter’s classroom where I literally had to leave the room bc Emmy would not stop saying hi…cute at first but it actually became disruptive and I went from pride to concern in a matter of minutes. It’s just hard. Sometimes I find myself saying that over and over because it’s hard to find other words. It’s just hard. And wonderful. And hard. Xoxoxo

    Reply
    • Erin
      June 2, 2014 at 5:19 pm (4 years ago)

      You could not be more right. Hard, then wonderful, then it starts all over again. It’s comforting to know others walk the line along with me. Even though I wish we did not need to. Thanks for reading and sharing your thoughts. Xoxo

      Reply
  8. Caitlin
    December 31, 2014 at 7:48 pm (3 years ago)

    <3

    Reply
  9. Sharlene Hawksby
    January 7, 2015 at 11:33 am (3 years ago)

    I am the mother of a 21 year old daughter with Williams Syndrome. I am still walking the line even after all these years. The joy that Katie brings to my world, how much I have grown and learned from her and all the love she gives everyone unconditionally has made that line easy to walk. In fact most days I dance the line – usually to her singing. This is life with a child with Williams Syndrome and I would not trade my life with anyone.

    Reply
  10. Carolina
    January 13, 2015 at 9:46 pm (3 years ago)

    You are defínetely not alone. I feel you and your little guy too. My son was diagnosed within the Autistic Spectrum around 3 years ago. The worse struggle so far has been finding an adequate school for him. The “special” ones here in Chile cost as much as attending a university and it was a hole ordeal going through that. Finally, we found a really simple and caring school, not prepared but with a lot of love.
    With a lot of effort, my son is being “declassified” (if I can say so). A year ago he could just say a few words. Now, he even complains at me when I put him to bed telling me “you drive me crazy” LOL.
    Our kids are amazing. Thank you for sharing your story.
    Greetings from Chile.

    Reply
  11. K
    February 8, 2016 at 9:05 am (2 years ago)

    I just read this post on The Mighty and was struck by how beautiful it is. This speaks to so many of us.

    Reply

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