Sunday, April 22, 2012

Inner Battles

While having a conversation with another parent of a child with Down syndrome they said “we are very proud that our son has Down syndrome.  Our daughter introduces him as ‘my little brother and he has Down Syndrome’”. 

The battle that I find myself fighting is where I stand in this thought process. I am in no way saying that these parents are wrong or anything of the sort.  It just causes a question in my mind. 

 I am very proud of Lorelei and am in no way ashamed of her having down syndrome.  However, I never feel that I want to introduce her as this.  To me she is not a “Down’s kid” nor does it define her.  She is just another kid.  She will learn and play along with everyone else.  She may end up being a little slower to do so but that’s nothing new.  Children progress at such varied rates anyways.  She already can stand, cruise along the couch, sign “more”, “dog”, and “all done”.  I am a proud parent … correction … we are very proud parents of a child with Down syndrome. 

This leads me into another debate that I am having with myself and I discussed this with Maria a few weeks ago.  It was really brought to my attention after another conversation I was having with a parent of a child with Down syndrome.  He informed me that in school systems in VA, siblings of children with disabilities are labeled as “high risk”.  For those of you that don’t know this means that they are likely to fall behind academically and socially.  It makes me almost feel bad having a shirt or sticker that says “proud dad of a child with down syndrome”.  The struggle isn’t because I have a disagreement with this statement. On the total opposite end of the discussion I am very proud of Lorelei.  The struggle arises when I think about Mikaela.  I never want her to feel that I am supportive of Lorelei and not her.  I want to be sure to show that I love both of them, am proud of both of them, and am in full support of both of them.  I want a shirt that says “proud dad of two amazing daughters” with the Down syndrome ribbon in the background or something along those lines. 

Some victories to tell you about:
I have begun a campaign at the high school I work for to create a few “Unified” sports programs.  It appears that we will be beginning a Unified Bowling team at the high school.  It will be a varsity sport pairing an athlete with intellectual disabilities along with an athlete from the general population.  We are the first high school in this entire part of VA to try a program like this.  The whole point is to get these kids working together and to allow the students that are usually in a self-contained classroom to get out and interact and show off their abilities to students that they normally couldn’t work with.  I’m really excited and am hoping to have a winter indoor bocce-ball team and a spring track and field team.  We’ll see how it turns out.

I am also working to have a disabilities awareness week where students can take the pledge to not use the word “retard” anymore.  I hope to also have a few speakers and show some informational videos.  I chose October because as you all know it’s National Down Syndrome Awareness Month.  The week would begin with the Buddy Walk in Washington DC on the 20th.  Then do the week of speakers and videos and finish the week on Friday the 26th with a benefit football game to raise money for the local workshop that helps find and provide jobs for people with disabilities.  I’m really hoping that this works out.

Tuesday, April 10, 2012

Meeting New Families

I feel like I have so much to write that I have no clue where to start! :)

To update, both girls are doing fantastic! :) Mikaela is still only taking a few steps on her own, but we will get her walking soon enough.  Lorelei is pulling herself up all over the place, bear crawling, and has even gotten bold and is standing without holding on to anything for 30-45 seconds at a time. We are making progress and are so excited about it. :)

We had a wonderful break with Grandma and Grandpa Erwin and Abuelo and Abuela.  We enjoyed a lot of family time and taking lots of pictures! :)

While we were in VA Beach, we got together with two other families that I met through Facebook.  Both families have a boy with Down Syndrome.  One boy is 7  months old and the other will be a year old later this month.  Thanks to Noah's, we all "met" and have been keeping in touch with each other.  We finally got to meet in person and had a wonderful time!  It was refreshing to talk to others that know what you are going through and where you are coming from and feel the same you do.  Meeting families that may be having a harder time than we did/are, also puts everything in perspective.  I feel like what we had to go through is so minuscule compared to others!  My heart just goes out to those families.  I wish I could do something for them, but I will just be here if they need me.

We also took the girls to the beach for the first time.  We went for a photo shoot so we didn't really "play."  Plus, it was chilly and windy so we didn't want to keep the girls out there very long.  Lorelei wanted to eat the sand.  Mikaela wasn't sure what to think about it. :) It was fun to watch them play and just makes me more excited for our trip to Myrtle Beach in June.

I received a message today from one of the nurse practitioners at the NICU.  She was asking if I would be willing to talk to a mother who recently had a baby boy that was born with Down Syndrome.  I was so ecstatic when I read the message! :) That is what we want to do! Brandon and I want to be advocates.  I am not a writer and find it hard to find time to blog every day, so I don't think we will be getting any recognition for that.  I will not be writing a book like the recent Bloom:  Finding Beauty in the Unexpected by Kelle Hampton (a FANTASTIC read!!), so I won't be telling my story to people that way.  I want to tell my story in person. :) We haven't been through a lot compared to other families, but we still have a story and it will continue for a very long time.  I want others to know that this is okay and that we wouldn't want it any other way.  I want to get the word out there somehow!  I want others to know that if they are lucky enough to have a child with Down Syndrome, it will be okay!