Service Star-Take 2 (3/31/09)

I needed to go back in and make some changes to this. :)

There are many days that I'm at work and I wonder if I'm really making a difference. We have 57 beds in my particular unit and I work in our acute NICU-this is where all the babies are admitted after they've been born and problems have been recognized. I'm having to deal with the parents of the sickest, most critical babies. Obviously when they first get there, they are in shock (because I know I was). Some are willing to talk and want to talk right away, others are not. Another obstacle is the fact that I'm only there part time-20 hours a week. I'm responsible for more than just talking to the parents at the bedside so I run into not being able to meet everyone that's there and I wonder, am I not meeting someone that may really need my help? Moving on. The hospital has this service star program-it gives a chance for parents, patients and other employees to say "good job". You get a star pin after 5 service star notices. So, over the course of the almost 2 years that I've been at the hospital, I've received 4 service star forms, all from other employees. While I appreciate the fact that the staff is recognizing the importance of a parent advisor and while I've received many notes of thanks from parents and stay in touch with quite a few, I've never received a service star form from a parent. I know, I know, it's really not a big deal and the notes of thanks should be enough and they are. I keep every one I get and treasure it. I don't want to come across like I need constant praise or attention but I see other staff with lots of pins and I think I want one too! Last week I came to work and there on my desk was a star pin attached to the service star form from a lovely couple who had spent 5 months in the unit. The things they said touched me greatly. It helped once again realize that I don't need to worry about meeting everyone and feeling as though I've helped everyone. If I've helped one family, then I've made a difference.

Did I make a difference in someone's life when working in employee benefits? I doubt it. :)

A Letter to God

Yesterday at work I was looking at some websites about preemies, special needs, etc. to pass out to parents at the pizza night function that I facilitate twice a month for NICU parents, I came across this on http://www.prematurity.org/ . Loved it and wanted to share it. I was pretty angry at God as well when Evan was born so I could totally relate to this "letter"!

What I Learned in Parenting a Child with Special Needs - A Letter to God
By Pat Linkhorn

Never let it be said that I won't admit it when I'm wrong or that I never apologize to people when I should. I thought you'd made a terrible mistake when my child was born and I said some pretty rotten things to you and about you. It seemed so unfair. I couldn't believe that you'd given me this child as part of "the plan". I was sure you'd made a horrendous mistake and I'm sure you got pretty tired of me begging for a miracle in one breath and then turning around and saying all those mean things about you in the next breath. I'm truly sorry.

Anyway, you were right. This child has changed my life. She's made me be all that I'm capable of and more than I ever imagined I could be. She's made me see things I would have overlooked before.

Take this compassion thing. Yeah, I knew what the word meant and I really thought I was back then, but I turned away when I saw a person with a disability and sometimes I even stared when I thought no-one was watching. What a jerk I was. My brand of compassion was more like pity for all that they weren't and I never saw them for all that they were. But.... I thought I was being truly compassionate. Thanks for teaching me that.

Then there was that tolerance thing. Sure I thought they should have equal rights and opportunities, but would I have gone out of my way to make sure that happened. Probably not. Now I live with a little person who I expect others to be tolerant of. Makes you realize how tolerant you really were before and helps you to understand where other people are coming from.

And the minority thing. Coming from a middle class white background doesn't even begin to prepare you for all the prejudices and oppression that you face when you become a minority yourself, via your child. Talk about a learning experience! It makes you empathize with all minorities.

Now I have to thank you for all the things you've taken away from me. Pettiness is one of them. When I think of all the things I used to worry about! What a waste of time and energy. But, I have to always remember how I was and how I am now. Those who haven't experienced what I've been through won't know the difference. I have to remember how I used to feel when I deal with them and I have to remember to understand.

Monetary values were the next. I recently listened to a speaker and one of the questions she asked was, "If given the choice, would you choose 30 million dollars or peace and happiness?" I was in a room with close to 30 parents who had children with disabilities and not a one of them raised their hand for the 30 million. (Although I briefly thought that 30 million would buy some quality child care and help further the cause for equality.) However, I did realize that it wouldn't make my daughter see, nor would it replace things many other children needed. Ten years ago I would have been convinced that the money was my answer to happiness. Now it's secondary to what is really important.

I know now that all the times I accused you of deserting me, you were, in fact, carrying me just as the "Footprints" poem says. I also know that the bad times are what helps me to grow, so I don't take them so personally now. But, just so you'll realize that I'm still me and that I'm still going to need a little help, (and since I've apologized so nicely) could you give me a small miracle and make my little girl see? Well, if you can't, I guess I understand. Miracles might be in short supply today, but just for the record, thanks again for letting me see.
Copyright © Pat Linkhorn

Pat Linkhorn is the Editor of Special Education at About.com and a professional advocate for families with children who have special needs. She is also an experienced parent and has two girls with special needs - autism and blindness due to prematurity. http://thelinkto.com/linkhome

Bunny

Bunny then (very white)
Bunny now (very much loved)

Today is Bunny's birthday. She is 8. She was given to Evan the day after he came home from the hospital and has been a loyal friend to him every since. Every time Evan has gone to the hospital or into the OR, Bunny has been with him. Bunny even gets her own ID bracelet at the hospital! Bunny has also slept with Evan every night since that day 8 years ago. She used to talk (she would pray "Now I Lay Me Down To Sleep") but I had to perform emergency surgery on her one day when her voice box went crazy and about scared Evan half to death! We love Bunny. :)

Kali

March 9, 2001
March 9, 2009

I love our cat Kali. She is so much like a dog-it kills me. She runs to the door if the doorbell rings or if she hears the key in the lock. I like to think she's excited to see me but all she really wants is food. I've never had a cat that is so obsessed with food. Really. All my other cats are content with a food dish that is full and they will eat when they feel like it. Kali will empty a bowl at one sitting if you let her. Poor thing is a little overweight. I think she weighs about 16-17 lbs. I try to feed her weight management food but she refuses to eat it. I try to limit how much she gets a day but she still maintains or gains. I think she has a thyroid problem. :) Anyhow, she is very social and will want to be where everyone is at all times. So, she has found that she likes to sleep in the little bookshelf in Evan's bed-it's very cute.

I got a little teary tonight while putting Evan to bed. I told him that it was 8 years ago today that we brought him home from the hospital and that was the 1st night he slept in his room. Just look how far he's come.

Spring, is that you? Part 2

Spring, is that you??

Pictures

Evan's former speech therapist asked if I could send her some pictures of Evan when he has his trach that she could use for a presentation. Since they were all taken before I had a digital camera, I had to scan them. Decided to post them since I now have them on my computer. He was sooo cute!!

Tonight

I was in bed with Evan and after we say prayers, I sing. One song that I have sung every day since he was a baby is You Are My Sunshine. Well, a couple songs after that one, he starts singing to me:

You are my mommy,
My only mommy.
You make me happy,
When skies are grey.
You'll never know Mommy,
How much I love you.
Please don't take my mommy away.

So, I am a mess, crying quietly in the dark bedroom. Then a few minutes later he starts crying and saying that he doesn't want the people he cares about to ever die. Whoa, what brought that on? I asked him why he was worried about that and he said that's it' s probably because he misses Grandpa because he cared about him a whole lot. Then I watched Brothers and Sisters from last night which was very moving and emotional (new baby was born and they named him Evan) so I'm exhausted from crying! I must go to bed. :)