Tuesday, June 21, 2011

Welcome to Italy

I'm feeling a bit fragile this week, what with Charlotte's birthday coming up. It's making me act like a jerk. Not wanting to see a friend's new baby because he will be small and cute and soft like Lily was last I saw her. Not checking blogs of close friends from our special needs world because I feel left out or something similar. Feeling resentful that old therapists and nurses and docs from our past don't just call up to say "Hey" and exclaim what incredible kids were Boof and Lily. Like everyone is moving along without us. Ridiculous, I know. Here I suddenly find myself in Glamorous Italy and I'm really missing Holland. Special Needs is a family, and it's a good one. It's close and strong and there to hold one another up. Once you are in, you are never out, even after they come to pick up the oxygen concentrator. My feeling left out is all my doing. Truth is, I just don't like the grieving. The sudden kicked in the gut feeling. The quiet. The look Non-Special Needs Family people get when they find out I've buried half my children. And the fact that I tell my story so matter-of-factly, because it's just my reality. Lot's of people's worst nightmare, my every day.
I miss my snuggly girls. Charlotte was a supreme cuddler. When I woke up terrified in the night thinking I hadn't turned on her oximeter alarm, I could go in and lay with her and hold her little chubby hands and bury my face her in thick coarse hair, smell her sweaty head. Lily slept between us the last few nights of her life, which was difficult with the feeding tube and pump and oxygen, but so worth it. I could lay my hand on chest or squeeze her foot. Hear her breath.
Lately after I finish reading to Ella at night, she immediately announces "I want to sleep in mommy's bed." Zar tends to not come to bed until very, very late, or very early, depending on how you look at it, so I let her. I love having her there, listening to her suck her thumb and sigh, being woken up suddenly by a grubby foot to the nose, but she will not have the snuggles. "NO!" She squawks. "MY PILLOW! NOT YOURS!"
After she falls asleep, sometimes I can lay my finger in her tiny curled hand, fingernails pink and chipped and slightly sticky. Usually she lets it be. Then I sigh and think on the difference between my girls. Two gave their whole selves to me to care and cuddle for, and the two who, already, are running away from me at the park, climbing out of their high chairs and only accepting hugs when they have scraped knees or bonked heads. Or are asleep.
There is a sweetness and sacredness to the absolute dependency I once knew. I miss it.


Anonymous said...

I so understand what you mean about the "sweetness and sacredness" of a child who is so dependent. I often watch our little one sleep and oh to hold her hand just lights up my world. Our little one came to us through fostercare and we will soon be finalizing her adoption, so maybe someday you will be destined to hold another fragile little one's hand, but for now I think you get to chase your littles and cherish the memories and snuggles of Charlotte and Lily.


Niki said...

Oh friend, I am sorry that you (we) have to keep hashing through the vicious cycle of grief. Know that I think you were a rockstar in Holland, and just had to be moved by the witness protection program to Italy. Still, people want your autograph :) I hope you find YOUR place soon. A lot of adjusting, trying to find one's place, ain't it? Just know that you always have a big one, in my heart. I can't wait to see you! HUGS

Tara said...

Such poignant and lovely words, my friend. Thank you for reminding me of the sacred and special gift it is to be a special needs mama. I can only imagine the way you must feel to live in Italy while a very big part of your heart remains in Holland. But you are forever a much loved member of the special needs family, I hope you know that. I'll be thinking of you this week and plan to give Charlotte a birthday gift by way of donation to her tree. Please know I'm always here for you!

Mary said...

Dear Erin--Your way with words always touches me, as it did again just now. How selfish of me not to have told you already that you continue to be an inspiration to me and so many others. You should know that because of you and Zar and your beautiful girls, and because you have selflessly shared your experiences, our ward choir now knows the story of your girls and will be singing "Consider the Lilies" in church in a few weeks. You can't possibly know how many people you have inspired, but you may count Zar's Aunt Mimi as one of your most loyal (though usually anonymous) followers. Love to all of you!

Lacey said...

Not that I know what to say, because I've never been in your shoes, only close. I was just saying the other day that Jax has this smell. None of my other kids have this smell, but I could just snuggle him and smell him all day!

The Snell Family said...

And I was feeling out of place. I got to thinking after Ava's party that I wasn't sure if we still fit. Thought that it might be just to hard on you to be around Arianna. Now I can see that I was just being silly. We may not fit at all gatherings but I know that you have a place for us, and you will always be a part of my family. You will so very special to us. love you girl.

Tara said...


I keep thinking about this post. It touched me a great deal and I'm wondering if I can share it on kidz? I've been afraid to ask because these words and emotions are so sacred, but the nagging feeling just will not go away. Let me know if you're okay with that.

Thanks and love you!


April said...

Oh Erin, this post touched me deeply. Sending all my love to your little family on earth and in heaven.