Tuesday, October 8, 2013

Down syndrome Awareness Month

October is Down Syndrome Awareness Month. In the past I have blogged every day to raise awareness. Frankly, that is just not going to happen. I guarantee it. I'm 33 weeks pregnant and feeling every centimeter of it. I'm tired and chasing after a 2 year old is hard work. At least I'm honest people. I'm spent by the time I get home from work.

I think that Down syndrome has become a part of our every day life that I forget it's there most days. Did I forget that Harper can't walk yet? Hell no. But her burst of language makes up for it. Her sassiness makes up for it. She is who she is. And she WILL hit her milestones when she is good and ready to. And on her own terms.

With that said......I've had a few things happen to me lately regarding Down syndrome.

I was on a panel in August to speak to potential Genetic Counseling students. I have a great relationship with my genetic counselor and she asked me to be on the patient panel to tell prospective students my experience with genetic counselors. It was a fantastic opportunity and one that I took seriously. While I wasn't there to speak specifically about Down syndrome it was still my job to advocate and raise awareness. I was able to tell them how their job would impact a life. I felt like I contributed something to society and maybe helped a few students decide on their career path.

I've meet a few soon-to-be moms who may or may not be pregnant with a child who has Ds. Exciting right? Well, I have to take myself back to that time where is wasn't exciting and remember how I felt. It was scary. Both of these mom's do not have an official diagnosis. One is far enough along that she is going to wait until he is born. The other is just starting her second trimester and has testing options she hasn't decided on.  But it's hard for me to contain my excitement. Yep, excitement. To me a baby is a baby. Whether he/she has Trisomy 21 or not. That baby deserves to be loved and for someone to be excited about their arrival. I want those moms to see how happy Harper is and how happy Harper makes me, her dad, her family and friends. I wanted so badly to celebrate my pregnancy with Harper that I want these moms to be able to as well.

Over it. 

Really over it. 

Diva in the making 

This is the part of the post that has taken me the longest to write. I have drafts sitting waiting to be published but nothing came out right. I'm sure not sure I did it justice. Here goes....

Through Facebook, I have been able to keep in touch with Tanya, a friend of mine from high school. Tanya and her older sister Tina, had an aunt, Ruthie. Ruthie lived with them growing up. Ruthie had Down syndrome.

At the time I had no idea how much of an impact Ruthie would have on me and my family. I wish I could go back and tell my high school self to pay closer attention to Ruthie. I do have memories of Ruthie. She was at all the sporting events Tanya or Tina were a part of. I remember going to Tanya's house and Ruthie was there. She was friendly and funny and didn't make me feel awkward. She was one of the few people with Ds that I actually knew. You could tell she was loved and that she loved fiercely.

While I hadn't seen Ruthie in years I had thought about her often after Harper was born. Ruthie gave me hope that Harper would be loved and taken care of. Ruthie gave me peace of mind. She was a living testament to what I want Harper to be. She wasn't a burden to society. She was a blessing.

I've thought of her even more now that I'm pregnant. Ruthie was the older sister. Her younger brother loved her. Makes me have hope for that future that Harper and her little brother will have a special bond that will be unbreakable.

Not that long ago I heard that Ruthie was sick. I started to think about her more. Think about Harper's future. Would she live with her younger brother? Would she be an aunt? What does her future hold? In the beginning of September, Ruthie passed away. She passed away from a family who loved her fiercely. To quote Tanya, "Ruthie is the most amazing person I've ever known or loved." That my friends is what life is about.

As I write this I'm watching Harper on the monitor holding her baby doll while she should be sleeping and saying "hi" over and over again. She melts me. And I'm so proud that she is my daughter and excited to see what type of big sister she will be.


Alicia Shulka said...

I can honestly say that Kaiti has inspired me to be a stronger and better person, she has gone through ups and downs while going through this life changing diagnosis of ds with Harper and she still remains strong and continues with everyday life. DS is now part of my life and ya know what I am proud to say it is! Harper has this contagious personality and just looking at her warms my heart and I can't help but smile. She is the most beautiful little girl I have ever seen and she has dramatically impacted my life. Love you both xoxo

Renee Anne said...

Kaiti is fabulous and I loved working with her. I hope she continues to be an advocate not only for people with DS but for all children with disabilities :)

Mama Bird said...

This was a beautiful post, Kaiti! I am so happy I knew Ruthie and know Harper. They make life happier and fuller.

PS- I love that you pick the pics that I took of Harper to use in your blog headers;)

Heather said...

Great post, Kaiti! I have a question about your blog! I'm Heather and my email is Lifesabanquet1(at)gmail(dot)com :-)