Our weekend

Was very busy! Most of Saturday was spent at school for the PTA carnival (fun but alot of work) and then Sunday we participated in the March of Dimes March for Babies walk. This was my first year and I was very surprised by just how many people took part. I also found that I got a bit emotional (Mike too). Two things really got to me. One, the number of t-shirts and posters from teams who were walking for a little one who was born and died on the same day. Two, seeing Evan in the mobile ICU ambulance with members of the transport team and knowing that he rode in one the day he was born and he was in the incubator that on Sunday was holding a teddy bear. The transport nurses there at the walk were so kind and I thought, they took care of my baby and they made sure he made it to Children's safely. It brought tears to my eyes.

So, if that weren't enough, we then went to Evan's first piano recital Sunday afternoon. He played 3 songs and of course I had the camera on pause instead of record when he played his longest and most difficult piece! Oh well. He did such a great job and he wasn't nervous at all. AT ALL!! I couldn't believe it. So, I got teary again. What else is new, right? :) I'm a sap when it comes to my boy.

Treasures

In my attempt yet again to clean Evan's room, I realized that many of his "treasures" are things that belonged to my dad. His ID badge from OSU, a photo of him from the '60s in his lab, Misha the Bear, the Olympic mascot from the 1980 Olympics (US boycotted these games but my parents went to the Soviet Union in 1980 and picked this up) and my dad's box. This box was on my dad's dresser ever since I was a little girl. So now it's Evan's treasure box. He has a few other things of my dad's in it. I am so thankful that Evan had a relationship with my father and while he was only 4 1/2 when Dad died, he really remembers him and grieves for him at times but knows and acknowledges what a special man he was. It warms my heart to know that all these things mean something to Evan and probably will forever.

I am not the patient

I will be handing this out to every family that I meet. It was written by two parents at a conference in response to the very important question, "Why is family-centered care important?".


I am not the patient but please:



Help me.....


I am not supposed to be here. This wasn’t supposed to happen. What is going to happen to my baby? Three months till discharge, you have got to be kidding. We can’t see that far into the future. I am afraid to hope.



Support me.....


The story book image of pregnancy and birth has crumbled before my eyes. I feel alone, everyone else that we know has had a normal pregnancy. They don’t understand what we are going through. How do I balance family life with life in the NICU?



Counsel me.....


I feel broken and defective. What did I/we do wrong? The gremlins are knocking on the door. How can I get through this? You say that it might be 3 months before we go home. All of the everyday pressures are compounded by my child’s illness, finances or job concerns and family issues to name a few. The bills are mounting, what should I do?



Involve me.....


I feel inadequate. I’m the dad, the fix it guy. There is nothing I can do to help my child. There are daily decisions regarding my child that are potentially life altering. Lacking any medical knowledge, I still want to make an informed decision. The technology you use to assist my child is intimidating.



Allow me.....


to understand what is going on. I’m the mom who has someone else taking care of my baby. Empower me I am supposed to be my child’s advocate, let me get started. I know I can do this if you let me. I don’t care how insignificant it seems, it starts the healing process for me.

He's still on cloud 9

Evan and I went to church this morning and then had lunch w/my mom and sister. I called Mike on our way home and he said that Evan had a phone call from the neighbor boys, wondering if he could come to their house again today. I couldn't drive fast enough to get us home! He's just so tickled that we can walk down our street and be at a friend's rather than have to drive. He came home this afternoon just so happy which then of course makes me happy. :)

Evan's Day

I just love my kid. He's just so full of life and finds joy in each day. He's met some new friends and he's just beside himself. The other night he and Mike were outside and a guy from down the street stopped to talk. Mike has been friendly with this guy for a couple years, like when they see each other on the street, mowing the lawn, whatever. He lives about 7-8 houses down. So, Ron wondered if Evan would like to come and meet his kids. Turns out he and his wife have a 1st and 4th grader-both boys. Their mom is a teacher at Clinton Elementary so the boys go there. It's funny that Evan doesn't go to our neighborhood school and these kids don't either. So, Evan came home that night so excited that there are boys on our street! The only kids that are close to our house are all girls. They all like Legos, Star Wars, Indiana Jones and Goosebumps. Matches made in heaven. So, they made plans to play today. I think they were all together from about 1-5:30. Spent some time at their house, spent some time at our house then Mike took them down to the river. Anyhow, all evening he's been saying what a great day this has been, it's one of the best days ever, etc. I know I could learn from him when it comes to finding something good about each day.

A little piece of history

This is a portrait of my mother, painted by Margaret Evans Price who was one of the founders of Fisher-Price toys. Margaret was an artist and an illustrator of children's books. My mother grew up in East Aurora, NY (my hometown as well) which is the home of FP toys. My grandmother worked for Mrs. Price so that's how this portrait came to be! East Aurora is a fabulous little town-check it out at www.east-aurora.ny.us. Although we moved to Ohio when I was 9 (37 years ago this month), I still think of it as MY hometown. When I was little, so many of my cousins were there (now a couple of the NY cousins are here in Ohio!) and family gatherings were common. It's so much a part of who I am in regards to my family history. It's kind of sad that we really don't have any family there anymore other than my cousin Sue. She retired last summer and decided to move back to EA so it's great that we have a place to stay when we go up. We have a cemetery full of family members and tons of memories. I know the town like the back of my hand and love looking at our old house, my relatives houses and the church where we went and where my parents were married. It was such an wonderful time in my life.

Evan's comic book

Evan did this a couple weeks ago when his friend Cohen spent the night. I just love when he uses his imagination and is NOT in front of the TV!! Click on the pictures so you can read the story.

My birthday

I am 46 years old. Wait, I have to say it again. I am 46 years old. Honestly, I don't feel anywhere near that and I hope to God I don't really look it! I'm trying very hard to get myself into shape before the big 5-0 so that I NEVER look my age. I think of things that happened 20 years ago and I find it hard to believe that much time has gone by. Anyhow, you are only as old as you feel, right? Right???

My child picked this card out by himself (according to Mike). Not only did I marry a geek, now I have a child that is a geek!

Honor Roll

Evan made honor roll again. He's done it every grading period since the beginning of 1st grade. I am so proud of him!! He loves math, science and social studies-now, I can help with social studies but he's on his own with math and science!