Tuesday, September 12, 2006


Hello, it's Abby again. I was walking with Ellie today in the garden enjoying the cool air and warm sunshine. We stopped at the sundial in the middle of the lawn to play. Play consists of me taking Ellie out of the stroller and she stands on my lap and looks around. Then she stands next to me and plays with my hair or face. We watch the other kids playing or just watch the trees blowing in the wind. it is generally a good time.

Today we were joined by Livy. A spunky 3 year old whose brand new baby sister was admitted yesterday for a respiratory problem. The father joined us and started asking about Ellie. So I gave him the short version of her situation. As I was talking I could see the smile slipping off of his face. I ended my story by explaining that she may never be able to eat fire buffalo wings but she will be able to eat many other things. He looked at me hugged his daughter a little closer and said, “Wow, that's terrible, absolutely horrible.”

I could see that he no longer was seeing Ellie as the incredibly cute baby that she is and had started to see her as a freak. (She was wearing a T-shirt today also so every once and a while her G-tube would stick out and that didn't help the situation. ) So just about the time I was about to stand up and start yelling at this guy for being a insensitive ass, I realized that the horror on his face was not really directed at Ellie.

The look of horror he had on his face was because he was feeling fear for his own child that was upstairs in the NICU. I think I got to watch as this guy realized how bad things could get for his new baby. I reassured him that babies are tough and can heal very quickly from pretty much anything. He just nodded hugged Livy to him. I felt like giving him a big hug but, I think that he was dealing with all that he could at that moment, so instead Ellie and I practiced waving goodbye and continued on our walk.

I was warned by another mother that going in to the real world would be difficult because people are not as polite as you would hope they would be. I had a mother tell me that another mother in the grocery story and asked, “Didn't you get any prenatal care?” Statements like that don't happen at Children's Hospital because here all the children are sick. But, when you leave all the sudden sick kids are not the norm and you stick out. One mother referred to it as “hospital society and real world society.”

People reactions are really based on their fears and they also want to feel like we did something that made our babies end up different. So that they don't have to admit how random and just shit luck this whole thing really is. I know that I wasn't in the real world in the garden today, but I feel like I got my little sample of it. It made me realize how tough Ellie and I are going to have to become.

On a happier note, Ellie is a standing fool. I think she is going to skip crawling, and sitting and just start walking. If you try to sit her up she stiffens like a board so that you either have to stand her up or lay her down. Laying her down results in a big lower lip and then a scream and standing her up gets you a big smile and squeal. She has also taken to standing at the edge of her crib looking out into the hallway and yelling and smiling at everyone that walks by. I can't believe this this is the same baby that was barely filling out a premie diaper 5 months ago.


Stephany said...

Oh Abby, you are strong, don't let anyone judge or eye roll or anything else. You put them in their place. You will be a fighter with Ellie her whole life and I know it!

I can't believe she's standing and all of those fun things - enjoy those moments and cherish them! And take lots of pictures!

Martha Brogan said...

I just bought a six month suit for Ellie and I think it is already too small- she is proving the experts wrong again- don't give up on the chicken wings!

Tunny said...

Well done for coping so well with this adverse reaction - sometimes people don't know how to react at all - A friend of mine has a daughter who was braindamaged at birth - She is older than Naomi and I too didn't know what would be the right thing to say so I sent a congratulations card AND a thinking of you card. My friend called to say thanks for saying congratulations as some people hadn't felt able to.
None of us can really be sure how to be in a situation which is so unfamiliar - perhaps this guy just knew he couldn't keep smiling when he heard of Ellie's circumstances but couldn't quite find his sympathy face rather than his look of horror!!.
I used to hate taking Naomi out in a forward facing pram when she had a nose tube as EVERYONE would stare - it's funny it was only ever children who asked why she had the tube so I had all sorts of levels of explanation suitable from 3 year olds up to about 10 year olds (teenagers were already getting the reservations of the adults not to ask questions!).
There were other days when Naomi was still in hospital and a nurse would pass a comment like 'oh she'll be fine' and I'd feel like screaming do you know how poorly she is how can you say she'll be fine? (they since admitted that they didn't think she would make it when her bilirubin was at it's highest but I guess I wouldn't have wanted to hear that either!!).

Now that Naomi is so well I sometimes feel that I have to tell people what she's been through so they realise just how amazing she is (at least it might explain the times I'm close to tears with pride just watching her doing 'normal' stuff that other kids do - Yes like eating chicken wings - never say never!!

Rhea said...

Some people do not understand that the comments that they make can be very hurtful. Olivia who is now nine months has never left the hospital society. It will be interesting on how I will react to comments that people make in the real world society. I hope that her wonderful personality and beautiful smile will be what they look at, not at her broviac or her G-tube if it is sticking out of her shirt. It's not an easy journey, but my husband and I feel very blessed to have her in our lives. I'm sure that you feel the same about Ellie.

mini and brother said...

My little Scott looks 'normal' now and so we miss most of the hurtful comments. But we had to take him to the ER this past Tuesday and the triage nurse, (after taking his medical history) said to another nurse right in front of me, look at this little baby, he's missing 1/2 his intestines and his GI hardly works, but he looks so normal. I interrupted and explained, it does too work, just differently than yours or mine. I think she was trying to compliment him but it still wasn't too thoughtful. I think you were gracious to that father.