Wednesday, July 28, 2010

from the inside looking out...

Hi Friends!

I am happy to say, I really don't have much to blog about! Evie is doing good... she had some vomiting today, but the doc thinks it's just from an antibiotic, and since we stopped giving it to her she has kept her pedialyte down.

I have been dealing with an interesting dilemma lately... Evie is not really into hats. It's 90 degrees... but Evie has a scar on her head from ear to ear. You know, I'm not really sure what the proper societal thing to do is. On one hand I feel like, Evie doesn't want to wear hats, deal with it everyone! On the other hand, we get enough stares. It hurts me more than it hurts her, but it hurts.

Walking out of Applebees on Tuesday, I heard a lady say to her co-diner "Look, that baby has cancer!" I get it. She's on oxygen, her eyes are a little bruised, she's wearing a cap in the middle of the summer. But it sunk in. Deep. I read a great blog post a few days before called "Please spare us the pity stare" This being my favorite part:

Believe it or not, I do not actually consider either of us worthy of pity. My son may not be your idea of "typical" but he's still an awesome kid. I don't want him to grow up feeling pathetic. He needs confidence, and lots of it. He deserves respect and dignity, hold the pity. Same goes for me. I am perfectly content with this child of mine. He's beyond adorable, he's bright, he's got a huge personality, he makes me laugh, he gives me tremendous pride in his accomplishments—you know, just like any other kid. I'm not saying my life is easy. I'm not saying that I don't cry over what happened to Max. But we have ourselves a good life. A life not to be pitied.

I am so thankful for the blogs of other women who have kids who are differently abled. Women who are years farther ahead in this journey than we are. I want to raise Evie to be comfortable and confident in her own skin. I have thought about looking for books about how to raise kids with special needs, any recommendations?

Thanks for listening friends (: Love you!

PS - Now that Evie's swelling is down I'm working on a before & after post... she looks AMAZING!!


  1. I am so excited to know Evie is healing well!! What a blessing :) I saw if she doesn't want to wear a hat, don't make her. If she wants to wear one, then let her! Just like any other kid :) We hope to see you soon!

  2. Thank you for sharing Evie's story. You're such an inspiration.

  3. Lindsey I am so there with you...isn't it funny how you "think" you are prepared for situations like you described, but find yourself so unprepared in the moment....I have thought about creating a little business card with info on it regarding Vinny's syndrome, etc...and when those moments come up and I don't know what to say or do, just hand one of them over...

    Ellen's blog is GREAT...she has gotten me through many tough days...She says it how it is and make me realize that we are going to be dealing with this stuff for a long long time...and that it is OK to feel how we do...

    Hugs and prayers for you guys!

  4. I love this Linds...I think it helps a lot to know what you need from your friends and the public - support, love, excitement and joy over evie - not pity. Thanks for sharing your process and life.

    I am reading an amazing memoir right now called "Expecting Adam" by a woman whose whole perspective on life changes when she is pregnant with a downs syndrome baby. She is not a Christian, but her life is spiritually awakened (I see Jesus all over it) by her experience with waiting for her differently abled child and the way she shares it is sooo inspiring and incredibly beautiful. Her story is obviously very particular to her situation, but I think you might still appreciate reading about her journey very much.

    Much love!

  5. "Expecting Adam" is a GREAT book if you have time to read it. A quick read, actually, because you can't seem to put it down.

    Forget about the hats. Who cares, even though I'm sure they're adorable. I feel pity for those who may never have understanding of how much joy a differently-abled child brings - seriously.

    Evie is one amazing kid. If they didn't look, that just means she blends in. God gave you Evie to be different. To change hearts, to stand out, to change YOU and to be beautiful Evie with a scar on her head and bruised eyes. XOXOX

  6. Maybe its an opportunity to educate others. While it is hurtful for you, how can this be turned into something more positive for everyone? I thnk that most people do not understand what a family with a differently abled child feels or needs. They see a baby, a child, a teen, or even an adult that appears to be seriously ill and feel pity for them. They haven't learned any other reaction. At the news of close relative's terminal illness, I felt sadness, pity, and anger. Now I have a different perspective thanks to the doctors, nurses, hospice caregivers, church friends, and the relative. I got to see the positives, one being the kindness, the depth of goodness that can exist in all of us,and the presence of God and Jesus all around us, even as my relative was dying. I needed someone to show me this, because the understanding was not there before. You are doing a supernatural job of caring for your girls. Please take care of yourself, too.