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
|Celebrating Ronnie's Birthday|
|Ron & Lisa|
|The Long Beach Crew|
|Ronnie with his BFFs...Tommy, Dave, & Vinny|
|Dylan with the ball....|
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 own...so please consider taking a moment to vote. Here is the link: