Christmas Eve

We went to the 5:30 Christmas Eve service tonight. It was a childrens service so it was a nice mix of the Christmas story and all my favorite carols. The time came for the candlelighting and the singing of  "Silent Night". I always get choked up and I tried my best to keep it together. After we were done singing, I looked over at Evan and he had tears streaming down his face and of course he's trying to wipe them away once I looked at him.  I said "honey, why are you crying?" and he shrugged his shoulder and said that he didn't know why-I could tell he was trying not to cry more. I told him that was okay and that it always makes me cry too. I asked him again in the car after he had composed himself and he said that it was just so peaceful and that the tears just came.  Oh my. I was blown away and of course had to hold back the tears yet again.  What a sweetheart he is. What a gift.

WHY???

Why do kids get sick at Christmastime? It's just not fair. Poor Evan woke up sick yesterday but was determined to go to school-he didn't want to miss Santa or his class party. I told him to go to the nurse if he just got to a point where he couldn't make it and I would come and get him. I tell him that every time he goes to school when he complains of not feeling well (unless he has a fever, he goes! Rosemary's rule). He's never been to the nurse's office until yesterday. I went to school for his party and his teacher told me he just got back from seeing the nurse. :-( Today he didn't leave the couch. I have a feeling we'll be going to The Little Clinic at Kroger in the morning. I just pray he's feeling better by next Saturday!

He listens, he listens!!

"It is important to nurture their children until they become mature because you want your kid to be responsible for everything and that is one step to be mature."

Evan wrote this at school. He actuallys hears what I'm saying once and awhile! Well, his version of what I say. :-)

A letter to Evan

Dear Evan,
We just came from your parent teacher conference at school and I am so very proud of you. Yes, I'm proud because of your good grades and your passion for learning but more than that, I'm proud of the young man that you've become. When I hear your teachers tell me that you are well-rounded, kind and loved by all your classmates, my heart swells with pride and my eyes fill with tears. What did I do to deserve you? There are many days that I struggle with being a parent and I feel as though I'm doing it all wrong but then a day like today happens and I realize that I must be doing something right, at least from time to time!

Lots of love,
Mom

So proud

Written by one of Evan's classmates. Click on the photo to read it. Click on it again to get it really big!

Halloween 2010

Halloween has come and gone. Evan starts talking about it in the summer (it used to be February) and it's all Halloween all the time until the morning of November 1st. Then the talk is Christmas. A little Thanksgiving talk but mostly Christmas. He wrote out his Christmas list today. Anyway, back to Halloween. His first idea for a costume was a zombie army guy. I said he needed to be something different because last year he was a zombie businessman. I wanted one more year of something fun and not gross!! Thankfully our trip to the Army Navy store convinced him (with some prompting from me AND a screening of part of Top Gun) that it would be cool to be a fighter pilot. I found the glasses at Wal-Mart and he borrowed Liz's dog tags from the Air Force. He looked at himself in the mirror and said, "yep, I'm hot".

Mike and I actually went to an adults only party on Saturday night. Can I say I was excited for it all week? My friends Keith and Alex have a huge garage w/a projection TV and they have a gathering every away OSU game. Lots of food and alcohol. My two new favorites-blueberry vodka w/blueberry and pomegranate juice AND Frosty shots. Chocolate pudding, whipped cream, Bailey's and vodka-frozen. OMG. I had one about 5 minutes into our arrival and the headache I had all day disappeared. So, I thought I better have a few more just to make sure the headache was gone. :-) You can't beat spending time with old friends.

Man vs Food!

Evan LOVES the show Man vs. Food. I mean, he loves it. I have to admit that I get a kick out of it as well. It's actually one of the only shows we all watch together. What makes the show is the host, Adam Richman. If you haven't watched the show before, Adam goes to a different city each week and goes to three local restaurants. When he was here in Columbus, he went to Thurman's Cafe, Schmidt's and the Ohio Deli. At the first two, he will eat something that the restaurant is known for and at the third, he'll try to get thru the restaurant's "challenge"-like the hottest sushi or a 6 lb burrito. What I love is watching him eat. He is so animated and he very descriptive about what he's eating. There is just something about him that is very entertaining! Evan can imitate him perfectly. Every night dinner has become a Man vs Food challenge for Evan. The good thing about it is that it gets him to eat at a somewhat normal pace! So, when I heard Adam was going to be at the opening of a new store here in town, I knew I had to take Evan to see him and get his autograph. So, I surprised him Thursday after school. He was thrilled. He did a cooking demonstration first and then signed autographs. Can I just say we were there from 3-7, in the same spot, on our feet the entire time. But you know what? I complained more than he did. In fact, he didn't complain at all. I was so proud of him. He didn't want to leave and was willing to wait as long as we needed to in order for him to get an autograph. Adam was great. He was very personable and fun and he talked with everyone. Evan was grinning from ear to ear when Adam fist bumped him. He is so proud of the autograph he got. Before he went to bed that night, he thanked me for doing that for him and he said it was the best day ever!

www.travelchannel.com/travelchannel/TV_Shows/Man_V_Food/Video/Adam_Defeats_Columbus_Sandwich

September sucks

I really am not a fan of September anymore and these past 30 days have not helped this poor month's case. The anniversary of Dad's diagnosis and death, the ALS walk (which I love doing but it's still difficult), his birthday and now this year we'll add a couple more things to the list.

1. Cathy lost her job. She has worked as a one on one aide for an autistic boy at the elementary school and because of Cathy, he made tremendous progress. He is going to be the one that suffers as a result of this decision that the school has made. Cathy is such a warm, loving and compassionate person and I hate to see her go through this.

2. My friend Shellie's dad has been battling lung cancer for over a year now. Last week his latest CT scan shows several tumors on his brain and one on his brain stem. Cancer sucks.

3. Liz and Cathy's good friend Denise lost her 5 year battle with breast cancer on Sunday. Cancer sucks.

4. Liz and I found out this morning before Denise's funeral that old friends from Phoenix lost their oldest son earlier in the week. We knew Kevin and Cathy in Phoenix back in the 80s. Kevin was the chaplain at the base where Liz was stationed. Christian was in the Army stationed here in the States. We don't know the details but no parent should have to deal with the death of a child. Ever.

5. Hello October!! I'm glad you are here.

Two observations

No driveway for two weeks

Two observations about today:

1. I had my annual ob/gyn exam today and I just love the way my young, male doctor says things like "women in your decade" and "during this transitional time in your life". Just say menopause for goodness sake!!

2. Interim report cards came out today. Why is it that Evan gets an excellent in "listens and follows directions" and "demonstrates self-discipline in classroom"? Enough said.

15 hours

I spent 15 hours in this bed over the weekend. It's called the Serenity bed at the Hilton. I can't tell you the last time I was in a bed for that long without being sick. Our anniversary was yesterday and the girls graciously offered to take Evan for the night. I put a blindfold on Mike and drove him to the new Hilton at Polaris. The bed sucked us in as soon as we got in the room and it didn't let go of us for 15 hours. It was heaven. One more thing. Get your minds out of the gutter 'cause I know it's there.

Bag of Me

Click on the pic to enlarge

Evan's first homework assignment this year was Bag of Me. He had to come up with 10 things that represented his likes and dislikes, his personality, etc. and they had to fit into a brown paper lunch bag. He then had to write about each item. I was determined not to help him and honestly, he really picked most of the items on his own. I suggested the cat toy to represent Kali! The item that moved me the most was the hospital ID band. I knew one of his items would be a Lego, a picture of the family, a video game, mention of his love of history. I never thought he'd include something that represented his medical issues. It kind of took my breath away when I saw the band and read what he wrote. I guess I shouldn't be too surprised since we've always told him that his scars represent who he is and without them he wouldn't be here. This will be one of those homework assignments that I will keep forever.

I have alot to blog about

but it's not going to happen tonight! I've been so tired this week. I think it's just the combination of jet lag and a big dose of reality. Evan being sick, back to work, school beginning. Just one of those weeks. I thought I was going to be energized after having such a wonderful vacation but obviously it wasn't enough!! I will say this. How can it be that Evan is now in 4th grade?? I was just stressing over where he was going to go to kindergarten. I now get to start worrying about middle school!!

A piece of good news

When Evan was born, the geneticist talked to us about VATER/VACTERL Association. It's called an association, rather than a syndrome because while all of the birth defects are linked, it is still unknown which genes or sets of genes cause these birth defects to occur. Each child with this condition can be truly unique, with defects being different from any other child. At present this condition is treated after birth with issues being approached one at a time. So, when Evan was born the TEF/EA (the TE in the acronym) and an extra thumb (L for limb anomalies), they immediately checked his vertebrae (V), his anus (A), his heart (C for cardiac), his kidneys (R for renal). While they didn't find any glaring issues with his vertebrae at birth, we knew he was at risk for scoliosis. His pediatrician noticed some curvature about 3 years ago and we've been seeing an orthopedic surgeon every year for a check. Last year the degree of curvature was 13 degrees. Of course I have worried about this-the last thing my kid needs is to wear a brace with everything else he's gone through. So, our yearly check was Thursday. Evan went off for his xrays and then we waited for the doctor to come in. When he did, he gave us some wonderful news. This year there is NO measurable amount of curvature. None. His spine is straight. We don't have to go back for two years and then if no signs of any new curvature, then maybe once when he's a teenager. He told us how to look at his spine and he showed us that because Evan had a thoracotomy when his esophagus was repaired, the top of his back can look like his back is curved. He also told Evan to make sure he tells us if his back ever hurts. I was and am so incredibly happy. And no, believe it or not, I didn't cry!

More on VATER/VACTERL:

www.cincinnatichildrens.org/health/info/heart/diagnose/vacterl.htm?GRAB_ID=30434850\&EXTRA_ARG=\&HOST_ID=1\&PAGE_ID=743\&HIWORD=VATER%2B

Summer so far

Six weeks into summer break and so far so good. I am so lucky in that I am able to arrange my work schedule to accommodate my family's needs so I am working two days a week and then I get in the rest of time either in the evening or weekend when Mike is with Evan. That gives me 3 days a week with Evan which is nice. Yes, we have gotten on each other's nerves at times but all in all, we're having fun. He is all about the Titanic so we made sure we went to COSI and saw the Titanic exhibit. He was in heaven! We all had a good time. Next week we're taking a somewhat spontaneous trip to NY and Ontario. There is a Harry Potter exhibit at the Ontario Science Centre and we thought about it and decided we HAD to go because yes, Evan is also in Harry. So, we're heading up to East Aurora on Thursday to spend time with my cousin Sue and then to the falls Friday where we will spend the night then to Toronto on Saturday! I am so excited! I think I it's because we usually take vacation in June/July and our big trip to Oregon isn't until next month. I'm getting restless!

Jay's 50th

A pic from the 70's-me, Diane, Dave, Liz, Jay and John

The Baseys and the Baddys

It's official. My two siblings are now both in their 50s. How did that happen? We had the best time Saturday night at Jay's birthday party. Cousins Bob, Diane and Tammis had planned to be in Ohio for the weekend to see John and Dave, so it was fun that they were all able to come to the party. It was just the perfect evening. We laughed so much, ate too much and just had one of those nights that I won't forget for a long time. I love my family. :-)

A Momentous Day for Nationwide Children’s Hospital :: Nationwide Children's Hospital

A Momentous Day for Nationwide Children’s Hospital :: Nationwide Children's Hospital

More stuff from 3rd grade

I just love reading all this stuff.

The end of 3rd grade

Hard to believe we are at the end of yet another school year. Evan had a great year in 3rd grade. He made honor roll all four grading periods again and was awarded a trophy at today's awards ceremony. He also got a trophy for Colerain's win in the Battle of the Books. He was very proud of himself and of course, I am extremely proud of him as well! He brought home his poetry journal today and this is the first time I've read his work. Wow. I was pretty impressed. If you click on the photo, you can see them better. Of course he has to mention the fact that we get mad at him sometimes!! Oh well. I'm not perfect and he's not perfect either and we do butt heads from time to time!

My son the inventor

Thomas and one of the Wright Bros.

For a few minutes this morning, he was Thomas Edison!

Spring Concert

We love Angie!!

Talent show

He got all his moves from me.......

Story about NICU

WSYX ABC6 On Your Side Top Story - SPECIAL REPORT: Miracle Babies, Miracle Workers

Good news for my mom

I love my mom. I know I've said it before but I'll say it again. I love my mom. She is so sweet. I had a little scare with my last mammogram and had to go back to James Care last week for add'l views and an ultrasound. She was determined to go with me, even though my appointment was at 9:30 in the morning. She knows the drill-after the spot compression mammogram (which applies 22 lbs of pressure rather than the normal 14 lbs) you sit in a waiting room with other women all in white robes. A radiologist reads the mammogram while you wait and then they let you know if you need the ultrasound and the process starts again. It's good that they let you know right away but the waiting is torture. It was nice to have her there with me. Oh, and all is well. :-)

She found out yesterday that the claim she filed to the VA was approved-new regulations from the Department of Veterans Affairs has established ALS as a service connected disease. Since my dad was in the military, she was able to apply for benefits as his surviving spouse and she will be getting a nice check (tax-free) each month starting in June AND she was pleasantly surprised to find a VERY nice amount sitting in her checking account yesterday-back payments from Nov. of 2008. She said all she could do was cry when she got the letter yesterday. She felt as though Dad was still taking care of her. :-)

Evan's tree

My dad planted trees for each grandson after they were born. Evan's was planted in the spring of 2001. It was small and fragile, just like my baby was in the spring of 2001. Nine years later, look how big and strong the tree has become. Just like Evan.

Happy Mother's Day

I will never get tired of the homemade cards. Did I cry? Hell yes I did!! I know there won't be too many of them in the future.

Flash Mob at the Ohio Union 5/3/2010 - The Ohio State University

I'm so proud

I'm so proud of Evan for two reasons. Number one. March of Dimes March for Babies. It was held this past Sunday here in Columbus. We were looking forward to doing it all together but unfortunately I woke up not feeling well that morning and I decided I needed to stay home. Evan and Mike still wanted to go and so they went and did the entire 5 mile walk! Mike said Evan wanted to keep on going mile after mile and didn't complain one bit. He was so proud of himself!

Number two. I met with Evan's team this morning for his IEP meeting. Turns out this was our LAST IEP meeting. After all these years of needing intervention (over the years it's been PT, OT and speech), he is now able to "participate in the regular education curriculum without further speech/language intervention". He readily volunteers during class discussions and enjoys reading his writing journals out loud to the class. I couldn't help myself-I started crying during the meeting! The speech therapist and asst. principal had tears in their eyes as well. The speech therapist told me that he has been a blessing to her these past two years. He has challenged her and he is a student who has met his goals. She normally works with children who will never meet their goals. I have prayed every day that he is confident and strong and today he proved to me that he truly is.