Saturday, January 22, 2011

Dylan's Mom vs Heather's Mom

Yesterday I registered Heather for Kindergarten. It is kind of a bittersweet moment as I realize my baby is no longer a baby.  As I walked into the room for registration there was a big sign that read "Welcome Class of 2024!" Yikes! I sat down with the school administrator and she asked me some questions about Heather.

Has Heather ever had Developmental Delays? No
Has Heather ever had Early Intervention Services? No
Had Heather ever had any serious health conditions? No (knock on wood)

As I am answering these questions I realize that the same answers for Dylan were yes, not just yes, but YES with a capital Y.

I feel that I have mastered being Dylan's Mom. I can list all of his sugeries, hosptializations, therapies, equipment, nursing schedule, and drs appointments by memory. I know our insurance policy like it is a recipe for macaroni and cheese. I know how to operate, maintain and fix all of his medical equipment. I can field the, What's wrong with him? What disease does he have? Will he ever walk? questions with ease. I can now even handle the stares and dumbfounded looks I get from people when I take him out...ok, maybe this one still gets to me sometimes. I relate easy to other SMA parents and parents of kids from Henry Viscardi where Dylan attends school.

Being Heather's Mom in a lot of ways is different from being Dylan's Mom. Being Heather's Mom means, ballet class, soccer, school playdates...things that most Mom's of healthy children do. I enjoy it, but sometimes I feel a little out of my element. I have been trying to get better by being more open about my situation with Dylan to some of the mom's I have met and have also taken some help from these mom's when it was offered to me (something that I really am not good at). I also have to make sure that Heather is able to experience things that Dylan might not have been able to experience. I can't hold her back in ways that I held Dylan back......not that she'll let me. I have said this before that I love how Heather is able to see our life as totally normal. It is what she has known from day 1. Now I just have to work on that, thinking my life is normal and that I am just a normal Mom like everyone else.

Here's to the balancing act that has now begun...hopefully I can land somewhere in the middle.

Tuesday, January 4, 2011

Holiday Overload

Celebrating Ronnie's Birthday 
We have had a very busy holiday season here at the Cuevas house. To be honest it has been a bit of a whirlwind here since Thanksgiving. Now I am looking forward to a couple of weeks of down time before I get into full swing planning the Greater NY Chapter events for 2011. Here are some highlights from our holiday season...

To kick things off I planned a surprise birthday weekend for Ron which included a surprise visit from Lisa (Ron's sister) who lives in Florida and a surprise get together party with all of his closest friends. We had so much fun spending the weekend with Lisa and really appreciated her coming to NY to spend time with us.

Ron & Lisa

The Long Beach Crew

Ronnie with his BFFs...Tommy, Dave, & Vinny

Also during that weekend we all attended Dylan's first wheelchair basketball tournament. It was such an amazing moment for our family. Our family was out in full force with banners and everything. Dylan even scored a basket and had an assist. We were all very proud of him. Even Lauren...Ms I'm Gonna Kick SMA's butt right out of town...from Team Run 4 Owen and who is also one of our very dear friends came to cheer Dylan on. Dylan was so happy and surprised to see everyone there to show him support.

Team Dylan

Dylan with the ball....
Speaking of Lauren...she ran a race in honor of Dylan in Central Park on December 19th. Dylan still is mad at me that we didn't take him, but he had a bit of a junky night and morning that day and it was pretty cold. I promised him that I would bring him to one of Lauren's runs in the Spring when the weather is better. We can't thank Lauren enough for how special that she made Dylan and our family feel.

Dylan & his #1 Fan, Lauren

The following weeks included...Heather's Christmas Show, going to see Tangled, baking cookies, Heather's Pajama Day at Dance, baking more cookies, Dylan's Holiday party, Ron's office Christmas Party, taking the kids to see Santa (same Santa every year and he always remembers Dylan & Heather by name), putting up Christmas decorations, finishing Christmas shopping, wrapping presents, oh yeah and baking more cookies....etc, etc, etc.....

Everyone here in Rockville Centre is very considerate of our family and have been a tremendous support to us throughout the years we have lived here. Once when our generator blew the Fire Department was here in 3 minutes with one hooking it up to Dylan's room, during a blizzard in 2009 our Police and Fire Departments got us to the ER when Dylan had RSV, and when we were having problems getting permits for our elevator the Village Administrators could not have been more helpful. Every year on Christmas Eve the Rockville Centre Fire Department goes up and down the block with Santa on the Fire Truck and the kids go running outside to meet the big guy. Every year when they come down our block, Santa gets out of the truck and rings our bell and comes up to make a personal visit to Dylan and Heather. It was really fantastic this year as Heather really understood what was happening. We can't thank those guys enough for all they do for us. Heather remarked to me how.."See Mom I told you I was on the Good List" since Santa had made a personal visit to our home. Yeah, her head really needs to be bigger folks. It has been a very busy month here to say the least. I am actually glad to exhale a bit and get my life a little organized but almost sad that everyone is back to school and work...I kind of liked having everyone around.

Getting down to some SMA business....pls go to the following link and vote for FSMA to get $50K for much needed specialized equipment for our SMA children. You can vote every day for the entire month. I know it is a lot to ask people to vote every day but there are so many people without insurance and jobs who can't afford this stuff on their please consider taking a moment to vote. Here is the link:

Also the very amazing Erwin Family are in the midst of organizing their Team for the NYC Half Marathon which is taking place on March 20, 2011. Here is the link where you can either register to be a runner or you can just make a donation:

Finally, there are so many sick SMA kids out there. Please say extra prayers that these kids stay healthy during the Cold/Flu season which is so rough on our kids.