Friday, October 18, 2013

A friend needs help...

This spring/early summer Harper was feeling yucky. We had taken her to the ER on a Sunday and they said nothing was wrong with her. Well I didn't agree. To make a long story short, my mom watched Harper the next day and we ended up taking her back to the ER. I told Andy to stay at work because they would probably just give her an IV and send her home. Well, an IV turned into blood work which lead to confusing results. We were told that her white blood cells and platelets were low so they ran more tests. I already knew that kids with Ds are more prone to Leukemia but this was a big slap in the face. They ran more tests and we were told if they came back abnormal that we would be admitted ASAP. Our luck, they came back half abnormal so it was our choice to be admitted or not. We chose to go home. Scary for us but not the point of this post. 

I can talk about my feelings and emotions at the time but I don't think I have to. The first thing I did was  message my friend Becky. Becky's daughter, Tessa, is only 15 days older than Harper and they live in our area. We've met a few times  and MADSS events. This year, Tessa was diagnosed with myelodysplastic syndromes (MDS, formerly known as preleukemia). I felt awful venting to her about the possibility of Harper having Leukemia when her daughter was living it. But Becky helped calm me. All from a Facebook message. 

Harper's tests were read from a specialty doctor the next morning and she was cleared. It was a nasty virus taken over her system. Not Leukemia. But this post isn't about Harper. It's about Tessa. 

Today when I got home from work I was scrolling through IG and saw a picture of Tessa at the hospital.......Tessa's preleukemia has officially turned into Leukemia. She's scheduled for surgery tomorrow morning for her central line placement as well as a platelet transfusion. She needs prayers. Her mom, dad, big brother, and little sister need prayers. Tessa is a fun, loving, on the go two year old who shouldn't be spending her time in 
a hospital. 

Look at how sweet and sassy Tessa is. This could have, and still could, be Harper. While kids with Ds have a better chance of fighting off Leukemia, it's not something any child should go through. 

I'm squeezing Harper tighter tonight. 

Neither one of them wanted to cooperate

Go Tessa GO!

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.