Monday, February 18, 2013

Hardship

Another party, another birthday party, I find them so hard. Or maybe it is because I am tired. Tired of having to constantly include Zoé. She never mingles with other kids, she is always alone in a different room, the party is outside, she stays inside, the party is downstairs, she's upstairs. Then, we have some accident to deal with, pee or poop ( it is still a battle, but it is MUCH better than it ever was). Driving home in the dark, Zoe in the backseat, listening to her music, I cried. I cried for her differences, for her challenges, for her inability to make friends when in a different setting, for her aloofness, for her hurdles, for her journey, and ours.
Some days are like that.
Especially at birthday parties, where everyone seems "perfect", kids are joyful, and mine is spirited away.
I cried and internally screamed: " why is she not like other kids? Why is it a constant battle?" I really feel hopeless.
And then when I feel like that, I think of my father, and how I miss him, and how effing (to quote Paul Auster) hard life can be.
Sorry for being so negative, but remember, the blog is the outlet, the one space I cherish, for I am able to let everything ooze out, the good and the bad, the joys of having a very special, loving child and the hardships and terrifying journey ahead.

On a happier note, a wonderful email uplifted my spirits. Bianca, the mother of one of Zoé's old classmates at Les Petits Francophones discovered the blog and sent me her comment. She agreed for me to share it. So here it goes:


"Salut Sarah,
This is Lucia's mom, Bianca writing.  I know we haven't spoken much, but I was doing my taxes this morning and so did a search for LPF to get the info I needed -- your blog came up in the top search results. I hope you don't find this too intrusive, since I wasn't invited to read your blog, but I was hooked from the first entry.  You have a real gift with words.  And a strength, love, and dedication towards your child that I find so amazing.  To be honest with you, I never even knew Zoe has special  needs.  I always thought she was so cute and charmante, with her red glasses, and reserved disposition.  I just thought she was shy.  And Lulu loves Zoe and never thought of her as "disabled" in any way.  In fact, when I was reading your blog, she was looking over my shoulder and just kept wanting to see the pictures of Zoe and commenting on how cute she was.  What I hope I'm conveying is that you, your family, and support system have done a great job in assimilating her with children who don't have the obstacles you all have to deal with.  We all like to think raising children is very difficult yet rewarding. I have an almost 5 year old and an almost 18 year old so I know the full spectrum. But you and your family have to do so much more.  You and your family humble us. And Zoe is such a beautiful result of all your love, patience, and hard work."
Bianca Cano Nakamura
          
THANK YOU, Bianca, you don't know how much these words mean to me!

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4 comments:

Pam said...

I feel sad to read this entry. Sarah, I would never take your feelings or presume to truly understand your experience. But in the 12 hours I get to spend with your precious daughter each week, I am constantly amazed at her ability to connect. With me, it’s through our routine, songs, (sometimes) battles, giggles, and her learning. Zoé forms strong connections to meaningful people in her life, children and adults. While it may be a struggle for her to jump in at birthday parties, I assure you that each week during the 12 hours with her classmates, teachers and me – Zoé is the life of the party.

Sarah said...

Dear Pam, thank you so much for your note, it makes me feel so good. I know that you see Zoe in a different setting, and I know I should not fret so much, but some days are like that. Your bond with Zoe is truly special and extraordinary and she loves you so much.
You make a real difference in her life.
I need to focus on Zoe's gifts ( languages, singing, playfulness, etc.) and not worry about her difficulties, but the future we face seems daunting. I also know that we have come from so far and I give Zoe credit for being such a trooper, for never complaining and always ready to tag along.
Thank you for being in our life, thank you for your care and dedication. Thank you for reading the blog and adding to it.

Leah said...

Hi Sarah,

I happened to stumble across your blog and just wanted to share a story with you. My brother in law has a son (who will be turning 4 this June) with Congenital Myotonic Dystrophy. The little boy's mother was diagnosed with Adult MD soon after he was born. Many of her siblings are showing signs of this disease as well. It has been a long battle. My brother in law is no longer in a relationship with his son's mother, but because she and her son have no where else to live or have anyone to care for them, they both live with my in laws. I see so many similarities with your Zoe. I just wanted to let you know that you are not alone in your struggles. Keep blogging. It's good therapy. Your Zoe is beautiful :)

Sarah said...

Thank you Leah,
Your message cheered me up. I went on your blog. One of my best friend out here is from Mississippi...your baby girl is precious.
Thank you for caring.
Warmly,
Sarah