Tuesday, April 3, 2012

How I feel around typical children

I've been meaning to write about a somewhat sensitive issue for a while. After sharing the Huffington Post blog about what it’s like to parent a child with special needs, a number of friends asked how they could be supportive to us. Some even revealed that they didn't always know what to say to us (which I really appreciated). This week, while offering kind words of support, someone shared that they knew I probably felt bad around their young child. It's a bit depressing to recognize the reality that our situation may be causing people we care about to feel uncomfortable around us..or that they may assume we feel bad about Caroline around other children (we don't).

I think sorrow is nuanced. And although I felt nearly every word Maria Lin wrote in her blog post, I was never sure about her second point: I am Jealous. I've been giving that part a lot of thought, but wasn't comfortable sharing my own experience until now. The truth is that I don’t feel jealousy around typical children. I don’t feel bad that my child has special needs. This may surprise and even upset some, but I never find myself wishing Caroline was a typical child. She is no more or less than anybody else. We hate that she has to struggle so much, but we can't change who she is. In fact, we adore her as she is. I can't imagine comparing Caroline to another child, and feeling that I am missing out. Some may think I'm in denial. I believe I'm just a proud mother.

Did I ever feel sad around typical children? Yes. My heart completely broke when Caroline went through the worst stage of regression about a year ago. Seeing children running, playing with their toys, talking to their parents, or even feeding themselves was beyond painful. Everywhere, I saw reminders of all the things Caroline was quickly losing. But those feelings didn’t stick around for too long. I needed to get over the shock of the initial diagnosis. I needed to figure out how to navigate this new world we were about to enter. Once I got over mourning for the child I thought we had, I began to cherish Caroline for who she really was...is. The odd thing is that I never once felt bad around children I knew...probably because we were surrounded by a great deal of support and love. In fact, being around children I know brings me a great deal of joy. I love watching Caroline's happiness when she's around her friends. And my heart melts with how sweet even the littlest ones treat Caroline. Their interactions are adorable, funny, and touching.

There are certain things that do make me feel bad… even drained sometimes. Our society places a great deal of importance on a very specific set of milestones and accomplishments. An individual’s worth is then based on their ability to achieve these goals within a certain time frame. Some parents can get wrapped up in how their child is measuring up, often resulting in passing remarks tinged with a bit of underlined competitiveness. Children sometimes end up becoming a measure of their parents’ own success. I tend to tune out such conversations. I just can't relate...and don't want to.

I also feel bad when I hear thoughtless comments that draw comparisons to things Caroline is unable to do. "I'm glad the infant phase is over because you get so much more out of them when they're talking and doing their own thing." "I’m so glad I don’t have to feed her anymore so that I can eat too!" "I'm relieved that he can finally entertain himself." Caroline inadvertently becomes a representation of what some judge as undesirable, which really hurts my heart.

I struggle to explain my feelings because there are no clear cut lines. Emotions are definitely heightened. The sweet moments and dark moments are felt more deeply. Although I am positive and happy most of the time, there are times in the year when I experience triggers that bring up feelings of sorrow again. Specifically, I don't look forward to holidays since Caroline's diagnosis. I also don't look forward to her birthdays. These dates remind me of the painful aspects of having a child who can't take part in “traditional” activities on her own. They also remind me that time is passing by and that I have a child who may not live to be 20.

But please don't pity us. We are happy proud parents of a beautiful little girl. Our household is filled with love, laughter, and humor. We strive to live in the present. And the present is beautiful.

22 comments:

  1. Such a lovely post, Marta. I (and I'm sure all of your other friends) really appreciate your candor.

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  2. Thank you so much, Michelle. This was a tough one to write. I had been putting it off for a while but felt it was time to share our experience about this much discussed subject.

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    1. Yes, great post. I'm sure it was hard to write but it really is enlightening. I hope you will always feel comfortable with all of us as well. I promise you'll get no pity around here. ;) Only offers of support or encouragement (and maybe just an extra long hug). Caroline is pure sunshine—my favorite word for her. And, while you may have more difficulties to overcome, you were blessed with a happy, smart, and sweet-natured child! I hope we get to see you all soon. It's been too long!

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    2. I've never pity from you, Rikki! Your friendship and support has kept me going. Thank you!

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  3. Marta, thanks for sharing this. I feel the same way.

    Cathy

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    1. I think of you all the time, Cathy. Hugs.

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  4. What a powerful and beautifully written piece! Thank you for sharing. I loved the image of you and Mike being love-struck whenver you are around Caroline. Your posts inspire me to be more loving. Finally I think you should turn this blog into a book. ; )

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    1. Thank you so much, Julie! I hope you guys are doing well and I look forward to seeing you :-)

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  5. Marta, I love this post. Can you teach me how to not be jealous of the typical kids? How did you get to that place? I hope I can get there as soon as possible. Im still jealous. it still stings.
    thank you for posting this! it has sparked a post in me too! if I can get around to it!

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    1. Hi Erica! I think it's the word "jealous" I had a problem with. Because I do feel bad, sad, and crushed...A LOT. I realize it's mostly from wishing Caroline didn't have to struggle so much, not because I wish she were different. I hate the way Rett makes every single little thing more difficult and painful for her. I also find pity incredibly demoralizing. Maybe there is a bit of denial going on...or it may just be my coping mechanism.

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  6. Marta,

    Thank you for sharing. Such beautiful words bring warmth to my heart. Caroline is a beautiful happy little girl & she is so lucky to have you & Mike!!!! Your courage, determination, and support is an inspiration. Muchos besos, Jimena

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    1. You are too kind, Jimena. I don't feel I am any of those things. I think I am just trying to still make sense of all of this.

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  7. Marta,

    This is just so well said. I really appreciate this post -- and your sentiment that we need to focus on the good but also give ourselves liberty to have feelings and frustrations resonated with me. Caroline is such a blessing. She serves as a real inspiration for me-- I love reading about her triumphs and progress. She is a strong little girl, just like her beautiful mom.

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  8. Thank you for sharing. I love reading about all of her accomplishments and Emma loves to see pictures and videos of her friend! Each morning when we drop Emma off Caroline always greets us with a smile when we say good morning to her...she has a wonderful personality!

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    1. Thank you so much for your kind words of support, Brianna. We LOVE Emma! We think that one of the major reasons Caroline is happy and engaged is because of her friends. Emma has been such a special part of her life since she can remember. Mike and I were just talking about what a sweet and just adorable personality Emma has :-)

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  9. perfectly stated Marta! Thank you for sharing your thoughts with everyone - Caroline is one super awesome little girl....I think she gets it from her mamma. HUGS!

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    1. Thank you so much, Kelly. It's hard to put into the words all the different layers I feel. My personal struggle is finding the right balance between hoping for treatments while trying to accept and even embrace our reality as it is. Of course I would love more than anything to find a way to end our girls' struggle. But I find that I'm not strong enough to focus on waiting for a cure because I start thinking about "what could have been" which chips away at my ability to cope. Having said that, I also find incredible comfort and hope in participating in things like the upcoming Disney Half Marathon!!! Can't wait!!!

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  10. Beautifully written! Yes, I think you should turn this blog into a book, too.:) Can't wait to see you in a few weeks!!!!

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  11. Martica,

    You are such an inspiration not only to mothers, but to those like me, that don't have any children. There are people out there (like you and Mike) that were blessed to have a wonderful daughter like Carolyn. She is special in every way regardless if she can or cannot do the things other children her age can. Only the two of you know the way she melts your heart. Thank you for sharing this blog.

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    1. Thank you so much for taking the time to read my blog, Pav. I really appreciate your encouragement and kindness. Your words meant a lot to me. Hugs.

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  12. Hi Marta,
    These posts are beautifully written, and so very inspirational. I see an abundance of communication and joy in her expressions and sounds ... she seems so happy! I loved this post - about not being jealous - you and your husband value who Caroline is - not what other people think children should be and I admire both of you. (p.s., I am a friend of Berkeley's and asked to see your blog. I hope to read more as you continue to share your journey.)

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    1. Hi Lisa! Thank you so much for taking the time to read our blog! I appreciate your kind comments. Caroline is a sweet and happy girl. We love her to pieces!

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