Mixed feelings

Most of the time, when a family embarks on a home remodeling project, the general mood is that of excitement for the changes mixed with dread of the disruption caused by workers in your home and, of course, the cost! Yesterday a backhoe started digging a hole in the ground behind our garage. Today the digging continues, along with some sawing and other noisy pursuits. We are building a first-floor bed and bathroom for Erica. She is getting too big for us to carry up and down the stairs and our home's bedrooms are all on the second floor. We talked about moving, but we love our house, our street, our neighbors and our elementary school. And then there was the housing market - we certainly would have taken a big loss on the sale of this home if we decided to move! So... we are adding on. And, I have to say, any shred of excitement that I should be feeling is overshadowed by the fact that 1. This is costing us a LOT of money. Erica is on a Medicaid waiver, which helps us out with a lot of costs relating to her medical and therapeutic needs. And if we were on a bigger waiver (with a bigger budget, as opposed to the Level One we have) it would have paid for a lot of the specialty products needed to finish the rooms we are adding. But no waiver will pay for new construction - only adaptation of existing structures. 2. I really liked our house the way it was; it was plenty big for us already; now I'm going to have even more rooms to clean! 3. I really, really, wish that all of this weren't necessary. I don't often fall into wells of self-pity or waste time asking "why my kid?" but major upheavals like this bring it out of me.

Oh, and did I mention the girls and I all have the flu? That helps my mood, for sure!

When this is all done, it's going to be great. I have to keep telling myself that...

Pumpkinpalooza

We took the girls to a family festival that was a fundraiser for the local children's hospital NICU. They had a corn maze, pumpkin patch, hay rides, face painting, carving demonstrations, and the big hit with our little ones - the barrel train. This was at Lynd's Fruit Farm - the same location as the apple orchards of my last post (the class field trip to the apple barn). Although it was very windy and overcast, therefore much colder than we anticipated, we still had a great time. I walked alongside the barrel train as they rode, just in case Erica leaned too far to the side and started to fall out. But she never even came close - she hung on to the little "steering wheel" like a champ and she and Natalie both kept yelling "CHOO CHOO!!" the whole time and giggling away. Fall is such a great time for family fun!

Apple Orchard

Yesterday was Erica's class trip to the apple orchard. Except for the part in the apple barn where the kids had to go through a narrow door and up 3 steps to an observation platform by the conveyor belt, the wheelchair handled the terrain very well. The kids got a free sample of cider, they got a small bag to fill with Jonathan apples and were allowed to pick one more to eat after their bags were filled. I'm amazed, actually, that Erica has never taken this field trip before. Preschool and kindergarten classes all over central Ohio make the pilgrimmage to Lynd's Fruit Farm (the largest apple orchard in Ohio with over 75,000 trees) but somehow her class never went until this year. We've been to the pumpkin patch before as a family, but I really do love the apples :) Now to try my hand at my mom's unbeatable pie crust while I still have my neighbor's peeler/corer/slicer on loan!

What if...?

Erica has a one-to-one aide at school, which enables her to be in a regular classroom. The aide fills out a daily report for me, and one of the sections I put on it is "interactions with classmates today." Today's entry warms my heart, so I thought I would share it. Here are excerpts:

T. checked us in...K. helped move chairs in the bathroom and washed her hands next to Erica, chatting with her...D. & J. & A. were literally climbing over each other to push her chair (at lunch)... we went outside and there were so many kids crowded around her that I heard a kid walk up and ask "what happened?"... T. & S. argued about who would bring her inside. I find the whole thing pretty funny - what if all people fought about was who could be a better helper for someone?

What if, indeed?

You're my best friend...

Who sings that song? Now it's in my head... wish I knew how to embed a tune into a blog post!

So Erica is actually excited about going back to school this year. What a difference a year makes!! Last year - transition to kindergarten - I'm sure mom's stress about it was noted and transferred to daughter, to some extent. She cried every night about having to go. She cried many mornings about having to go. By the end of the year, she was totally OK with it. Last night she had a hard time getting to sleep. She called me into her room around 9:30 and asked, "Mom - is school tomorrow?" I said "no, in 3 more days. Are you excited?" She said "yes." I thought, "praise the Lord!"

Tonight we were talking about what we need to do tomorrow to be ready for school on Wednesday. I reminded her about her kindergarten friends who will be in her first grade class (only four of them - I thought there would be more). She thought about her friends for a while, and then said, "Mom - you're my best friend in the whole wide world." I said "I'm very honored to be your best friend" and then I had two immediate thoughts: 1) how long will this last? how old will she be when she wants nothing to do with me? and 2) how I hope she one day finds someone *else* to be her best friend in the whole wide world!

The Miracle League

I just started a mini-album to document my daughter's participation in Miracle League baseball over the years. This was her fourth year to play. She has gone from being pretty darned apathetic about the whole thing to being excited when she wakes up on a "baseball day." I've completed a few pages so far from her first season, and seeing the smiles on the faces of her team mates and of the family and friends who come to watch her play makes me realize anew what a miracle the Miracle League truly is. It is one of the few opportunities that families have to bring their kids to a fun activity and then just sit back and watch them have fun - without having to get in and somehow facilitate their participation.

I went online to find a logo that I can use on the title page of her little album, and on the website for The Miracle League I found a video clip and a song by Eddie Kilgallon – sung by Montgomery Gentry - that I just love. I'm listening to it over and over as I write this post. Usually when I go online for the Miracle League I go straight to our local page with the schedule, etc. on it, so I have never come across this little song before. Enjoy! http://www.miracleleague.com/

A Perfect Day

At the beach in Ocean City, NJ. Natalie's first view of the ocean, her first beach experience. Erica has been telling everyone all summer long "we're going to the beach!" We're staying in Somers Point, across the causeway from Ocean City proper. So it's a short drive to the beach, not in walking distance. But the girls have enjoyed all the usual beach activities. They loved building sand castles, and jumping in the waves. We all gobbled Mack & Mancko pizza from the boardwalk for lunch one day, and sucked down fresh-squeezed lemonade.

My big indulgence was to schedule a photographer to do a family portrait photo shoot on the beach one evening. We wore those silly matching outfits, and I think they turned out really well - can't wait to see them online.

We borrowed a beach wheelchair from the city recreation dept. It has big balloon wheels and moves easily across the sand, not to mention avoiding getting sand into all the nooks and crannies of her regular wheelchair. There are issues with using it - it's very big and won't fit in the van along with her regular wheelchair, so while we are at the beach she is stuck on the sand b/c you can't use the beach chair on the boardwalk or the street. But it was worth the effort. Our backs can't handle holding her up for very long to experience the ocean, but I can stand out there forever and let the waves lap her feet while she sits in that chair!

Sitting under the beach umbrella after a long time in the waves, wrapped in beach towel, Erica sighed and said, "a perfect day." I guess that says it all.

Can you tell me how to get to Sesame Street?

Well, the vacation I've been planning for years has finally happened. We just spent two days at Sesame Place theme park in Langhorne, PA and it was a blast! It is smaller than Disney, of course, and even smaller than Cedar Point. All of the attractions are geared toward kids and the Sesame Street characters and songs are everywhere. My one fear was that Erica's semi-phobia of costumed characters would cause her to be looking anxiously over her shoulder the whole two days and prevent her from having fun. But not so - she did great... partly, I think, because the characters were all ones she knows and loves.

Accessible parking was right by the park entrance. All of the shows were in amphitheaters, so we always got to sit in the front row on the end with the wheelchair. A bit close for comfort to some of those characters, but again she did great. She was able to ride a few rides with me - we had a blast on the flying fish Elmos. We got a great curbside spot for the parade - I think I got some really good pictures of that! We had dinner with Big Bird and friends - lots of photo ops there and Erica didn't have a heart attack. Possibly the favorite activity of the visit was the lazy river on inner tubes. The girls screamed with laughter and excitement at every turn - priceless.

Sunny day, sweeping the clouds away... well on to the beach now!

On to first grade!

Well, I can't believe that the whole school year, plus one month of summer has flown by and I haven't posted again about kindergarten. It was a great year. Our IEP meeting went smoothly and I'm very happy with the results. After the turnover in the aide position, we got a fabulous person in the Spring who was so worth waiting for! She and Erica really connected - immediately. She seems intuitively to know how to motivate her and of what she is capable. Noelle gets her to wear her glasses. Noelle gets her to write her stories on the computer (not sure why she decided she didn't want to do this - seems like most kids would jump at the chance). Noelle gets her to USE THE TOILET!!!!! She has had dry days now and we are actually dreaming of one day saying goodbye to diapers. Most importantly, Noelle gets her out of her chair and moving... AND she gets her talking and interacting with the other kids in class, who now feel comfortable asking questions about her and therefore are more comfortable treating her like a peer. We are thrilled that Noelle will follow her to first grade, and I just know it will be another great year.

life balance

A fun thing that is moving around Facebook these days is "25 Random Things About Me." I saw it and immediately starting thinking about what I would say if I were tagged to make my own list. And, sure enough, I was. I really like reading little obscure factoids about people I already know. In writing my own list, I reinforced something I already knew about myself. It's really hard for me to be brief and to the point. Almost every random thing I wrote turned into a little story. I'm still finishing up the list, and I actually plan to go back and edit it to remove some of the explanatory storytelling from each item before I post it to my Facebook profile. I was actually putting about 5 or 6 random facts into each by expanding on the initial fact. It's 25 random facts, after all, not 125! There's nothing wrong with just putting a fact out there without giving the whole background to it. Let people wonder, right?

As I was nearing the end of my list of random facts, I noticed that very few mentions were made of my special needs parent role. I do make a concerted effort to maintain a balance between that and other aspects of my identity. From talking with other special needs parents, I know that it can take over your life. Some say that they no longer have friends outside of the disability community because their "old" friends just don't understand what their life is like now. I feel extremely fortunate to have friends and family who genuinely care about and understand Erica's challenges and appropriately rejoice with me in her accomplishments. And I actively pursue activities that renew my ties with those friends - a book discussion group, my scrapbooking hobby, a Bible study group and cruising around on Facebook, among others. I chose to make my blog ABOUT this particular aspect of my life, and I think that studied reflection is also healthy for me and contributes in a positive way to my life balance.

Whatever it is that consumes a large portion of your life and your identity, I pray that you find the right balance to maintain healthy relationships with the people you love and a positive outlook on life in general.

Josh Blue

I went to the comedy club last night with a friend and fellow CP parent to see Josh Blue, a comedian who has CP and a winner on Last Comic Standing. He was truly hilarious! I just loved his routine. Coincidentally, seated across the table from us were two more CP parents. I wonder how many of "us" were there? As when I cheered for Abby Curran in the Miss USA pageant, I am always thrilled to see young people who haven't let their disability stop them from achieving their dreams.

Abby Curran story
Josh Blue YouTube clip