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Thursday, March 21, 2013

World Down Syndrome Day and Lots of Socks

Happy World Down Syndrome Day! Celebrated on 3/21 to signify the trisomy on the 21st chromosome. I spread the word by mouth and facebook to wear funky socks for the lots of socks campaign.

My Socks

I got to school and was greeted with some sock wearing companions waiting on the kids to get off the buses. Socks on their pants, toe socks, and pants rolled up with funky socks showing. I was ready to spread the word and explain my socks, but only one person asked me why I was wearing my socks. Not even my students noticed. So I was a little disheartened reflecting on it as I rode home. But then I logged onto facebook and found this...

"Rocking my socks today ;)" (from my friend Sarah)

And this from Grayson's Aunt BT...

"It's Down Syndrome Awareness Day. I'm a proud aunt of a beautiful (almost 2 year old) boy with Down Syndrome! He was a blessing to our family and I've loved watching him face different challenges in life! He has two amazing parents and an amazing big sister! I'm blessed to have such an amazing nephew!"

And this...

"Happy to celebrate recognition of world down syndrome day" (from my friend, Jodi)

And this from Wee Pie's other aunt, Aunt Nikki...
"It's Down Syndrome Awareness Day! Over 400,000 people have DS including one of my favorite nuggets, my nephew Grayson. I am so proud of him and can't wait for his sloppy kisses at Easter."

All the pics and posts were full of comments and questions about the lots of socks campaign, Down syndrome, and of course wonderful compliments for Grayson's pure sweetness.  Thanks so much from all the supporters of the campaign and the day to raise awareness for Down syndrome. It made my day to see others sharing information and support for our DS community. Lots of love!

Monday, March 18, 2013

Still Not Sweatin' It or My Way of Sharing World Down Syndrome Day (3/21) or Our Trip to the Zoo

Why am I not sweatin' the petty stuff or pettin' the sweaty stuff?

Grayson didn't want to turn around to take the picture.
 Because I am beginning to learn that I just shouldn't. I have spent the last 2 years in a state of worry. I've spent them in a state of woe or even mourning, but I don't think that is the true description for it. I've just been different. Not myself. Sometimes I didn't even like myself. I would be in the moment, not being myself, knowing I wasn't being myself, and yet I still acted not myself! It was frustrating. I cried to Drew about it, my mom, my close friends. Why couldn't I just be me again? What happened to me? Is this what I was going to be like forever? Is this what a stressed out mom, teacher, parent of a special needs child, and wife acted like? I lamented who I used to be, I grieved over who I was becoming, and I longed for the old me.

Me preggers with Grayson and really really a Blondie!
 But I am slowly coming to realize that I will never be that person again. A lot has happened in my life in the past two years. I had Marloe, got pregnant with Grayson 6 months later while still learning how to be a mommy, then found out at birth that Grayson had Down Syndrome. I can't be the same person after going through all of those life changing events in less than two years. I am just now realizing that a year and a half later. I am beginning to accept who I am now, in the present.

The lamentation over the past me is slowly staying where it should the past. I like this newness. I like the feeling of accepting where I am in life...Finally! I feel fresh, excited, like anything is possible. Bring it on Spring! I welcome your growth. I am going to grow with you.

March 21st marks World Down Syndrome Day. This is a day to raise awareness for people with Down Syndrome. But for me, every day is Down Syndrome Day. This is my life.  I want to raise awareness every day. I want to tell my story to the world. That's why I started this blog. Its been so therapeutic to just get my thoughts out and maybe someone, somewhere is learning more about people with Down syndrome because they clicked my link or found me in this great big "web." I hope so. I know reading other parents of Down syndrome children's blogs like Noah's Dad, Pudge and Biggie, and The Bates Motel has helped me. They have inspired me to share our life. Of all the resources, books, pamphlets, and websites out there on raising children with Down syndrome, other parents' stories have been the most helpful.

I have a special needs son, a typically developing daughter, and a wonderful husband who I share my crazy life with. I have a great supporting community of family, friends, and co-workers. And yes, Grayson has delays. He has therapies. Yes, I have to explain to strangers and acquaintances why he isn't walking yet or what living with a child with Down Syndrome is all about. But I don't care. I want to do that. I love talking about my children. Above all the diagnosis and chromosome counting, Grayson is my child, my son. He is my wonderful, curly haired, blue eyed, funny, stubborn, snotty, slobbery, and loving son.

And now more pics of  Our Trip to the Zoo
Marloe giving tokens to a wildlife project.

Grayson watching tortoises.

Family Shot with Nana (my mom)

Nice people offered to take one of all of us.

Now if only we were all cooperating...Marloe!

Taking a break on the playground.

Such a Little Sweetie!
Hopefully I will post my Wordless Wednesday and make a post on 3/21, but if not
Happy World Down Syndrome Day! I'm loving all of my world Down syndrome days for the rest of my wonderful life! 

Tuesday, March 12, 2013

Upcoming Surgery Update

The Daddy and I have been waiting to hear from Grayson's ENT. Back in January, we decided that Wee Pie would benefit from tubes in his ears and a possible adenoid removal. The doctor was unsure that the adenoids would need to be taken out, but was going to take a look when he did the tubes. He told us if they needed to come out then he would. I never knew that adenoids are just fatty tissue at the back of the throat that is actually shaved off during the removal surgery. Who knew?

Grayson Goo also needs stints put in his tear ducts to help them drain properly. He often gets pretty puffy eyes because the ducts don't do their job. So the eye doc and the ENT doc decided to tag team the Wee Pie. We thought that we could get this all done during spring break so we wouldn't miss any work, but...

The doctors want their spring break with their kids, too. So we are having to schedule it for later in April on Thursday the 25th in order to kill three birds with one stone. We are okay with this. I am trying not to sweat the petty stuff or pet the sweaty stuff.
Looks like he is walking, but not yet. We gotta do this on his terms, I guess.
Wee Pie could care less, too. So Grayson will have his surgery early on April 25th. Dr. Devaro, the opthamologist will perform first. Then Dr. Rawlings, Grayson's ENT will come in and finish up. We are opting to stay overnight in the hospital even though these are both considered Day surgeries.

I wanted to give Grayson a little extra care since he will be having two, possible three procedures done at one time. It will probably be three. That child stays snotty and sick. We are hoping this will help graduate Grayson from Snot and Slobber King to just plain Slobber King. I am glad we are doing it this way. I didn't want to have him put under twice this year. Once is enough for me. I feel like this is little nuggets compared to the chickens we friend with his open heart surgery almost a year and a half earlier. I plan making a page on this experience.

I will keep you updated on the surgeries as we hear more news and actually have them later in April.