Friday, March 20, 2015

To My OBs on WDSD 2015

Dear Docs,
Three years ago, you all saw me through my pregnancy with my son Porter. We found out we were high risk for Trisomy 21 & Trisomy 18. Some of you encouraged me to keep my options open and pushed for additional testing. We caved and had the amnio. Around 18 weeks, we got the call..."I'm sorry, but your baby has Down syndrome." 
February 2012....two weeks before Porter's arrival.
Again, I find myself visiting your offices with increasing frequency. Again, you're guiding me through pregnancy. And while I'm now 35 and truly "high risk," I've had my MT21 test and screened negative. There's no talk this time of options, just "everything looks great." My baby has been a baby the entire pregnancy and we haven't once heard the word fetus. This time it's different- no one is walking on eggshells when they step into my exam room.
And, I think I get it. Your experience with Down syndrome is at the start of each family's journey. The start is a hard place to be. It's filled with negatives and fears...grieving for that baby the family imagined. The beginning can be a dark time. I wish I could hit fast forward for you and show you all the good times ahead....because good times there are. My son is the most unexpected gift I've ever received. He teaches me daily and he shows me how to love unconditionally.

So today, in honor of my son and all those with three copies of the 21st chromosome, I'm asking you to call on us experienced parents when you have to again deliver this news. Offer me as a resource at the same time you offer genetic counseling. Let me and other parents like me guide new families through the uncertainty and show them what we've learned. Let us help. Let us help you too- let us show you what happens after we walk out the hospital doors and begin to build a life together with our new little soul. Let us show you the love.

Thursday, March 19, 2015

3/21/15

It's time for World Down Syndrome Day again. This is our fourth year celebrating and its marking up to be the best yet due to a very cool Random Acts of Kindness campaign. Why 3/21? Down syndrome is a genetic condition in which the cells contain three copies of the twenty-first chromosome. So, each year on 3/21, we celebrate everything that Down syndrome has given us. Feel free to check out our past celebrations in 20122013 & 2014

When I first watched The Incredibles, the villain's name, Syndrome, stuck with me. Syndromes, or differences,  are often met with such a negative outlook. When the genetic counselor called to tell us "I'm sorry, your baby has Down syndrome," her voice was heavy and she sounded like she was handing us a death sentence. In hindsight, we've learned this syndrome isn't something we should fear. It's not a villain out to ruin our lives. It's an opportunity to make our lives better- an opportunity to see our son as a child first and not a syndrome, to meet good people and to choose to see the good in people at the same time. Down syndrome is an opportunity to choose to see happiness and love in the world through Porter's eyes. This kid is not someone you should fear...he's someone you should try to better understand and try to emulate, for he truly brings out the best in people. 

When I watch Porter, I'm amazed at what he can do. But I'm also amazed when people don't expect much from him because of his syndrome or because of his gross motor delays. I want to shout and yell "he's capable!" as loud as I can. I want to tell people "expect just as much from him...maybe even more." I want to brag about everything he knows. I want them to see him for what he is- loving, funny, smart, brave, shy, cautious, attentive. I want them to understand that his almond shaped eyes have a story to tell and while he doesn't always use his voice in a big group, once you get him going, he'll tell you that story. He has favorites- he loves ice cream and blueberries, the song Sugar by Maroon 5 and Shake it Off by Taylor Swift. He loves his speech therapist Miss Lori and his grandparents and cousins. He adores his sister. He has best friends- Lexi, Liam and Alex, and he asks for them all the time. He likes to play games like Pop Up Pirate and he loves Sesame Street...especially Elmo and Cookie. He's so much like other three year olds. He gets frustrated when he can't do things and he is motivated by watching others do things. He thrives on rules, structure and schedule. He knows what's going on and knows how to work a room. Expect much from him and he'll give you much in return. But, expect little from him and he won't show you much. He knows that he can use his smile to get away with things with some people, and he does. He gets it!   
Penny is really trying to figure out what Down syndrome means. Lately, there's been less "when I was a baby and I had therapy" or "do I have Down syndrome too?" and more "is it because he has Down syndrome?" chats in her bed at night. 
  • Why does Stella's one year old sister walk, but Porter didn't until he was almost three? Is it because he has Down syndrome? Yes. 
  • Why is Porter crying at bed time? Is it because he has Down syndrome? No! It's because moving to a big boy bed is a big change. And then we looked at photos of her asleep by the gate in her door when she moved to a big kid bed :) 
  • Is Porter really the only one at our school who has Down syndrome? Yes
  • Am I part of the Down syndrome group too? Yes...you are a very important part! Because you know that you've got friends in the group both with and without Down syndrome. You know your friend Brianna has Down syndrome, right? No way mom, I didn't know that!
Penny's learned something that it takes most of us a lifetime to learn. She's learned to see past the differences and to see her brother. She teaches us when to be compassionate and when to be stern. While she may notice the differences, like a cool set of wheels that helps someone move, I think she really does see a person first. So please, try to look past the differences that you may see when you look at Porter and see a boy...a boy who shows us a whole lot of love!
If you'd like to learn more about Down syndrome, visit NDSS. If you'd like to learn more about about the 3/21 Random Acts of Kindness Project, visit World Down syndrome Day. And, if you'd like to learn more about an amazing project from the Down Syndrome Diagnosis Network, check out A Day in the Life with Down syndrome. Sending love to all of our chromosomally enhanced friends today, and always!

Wednesday, March 18, 2015

Happy St. Patrick's Day

Happy St. Patrick's Day! We celebrated the kids great-grandfather McNamara's Irish heritage in style again this year. We tried to teach the kids a little bit about Ireland and distract them from the leprechaun traps that were learning about at school.
We do silly things each year to celebrate, like wear our green headbands and eat Lucky Charms for breakfast. 
And, we had our Shamrock Shakes. To say they love the shakes is an understatement!
 
But, we like to keep the Irish Blessings in mind above all. Because we've found our pot of gold in these two :)
May the saddest day of your future be no worse than the happiest day of your past.
Happy St. Patrick's Day!

Wednesday, March 4, 2015

3-4-15 Spread the Word to End the Word!

There's no better day than today...on 3-4-15, we "spread the word to end the word". You too can take the pledge to end the "r-word" by visiting http://www.r-word.org/. Take the pledge for Porter. Take the pledge for every person with an intellectual disability. Take the pledge, please. By taking the pledge, you're not saying that you're perfect. I know I'm not...I used that word in HS when people made fun of me for being a nerd. You're saying that respect matters and that language has power. You're saying that you're willing to make a difference in the world by eliminating one word from your vocabulary that can help build up a community. You're saying that all people matter. There are many words that negatively influence people and that have the power to hurt. Be cognizant. Be respectful. Show love!

Monday, March 2, 2015

Big News

video
Here's a video from a few weeks ago that I was waiting to share. We've got quite a lot going on in our home :) Within minutes of learning that Porter would be a big brother and she would again be a big sister, the questions and ideas started flowing out of Penny's mouth.
  • Where does the baby come out from?
  • Can I see the baby come out?
  • How long will you have to stay in the hospital? I'll just bring my sleeping bag and stay with you.
  • So when this baby is born, I'll be almost five and a half. When will the next baby be born? Maybe when I'm in second grade.
  • Counting the ultrasound pictures...one baby, two babies, three babies...sorry Penny, but there's only one baby in there :) The tech was just nice and gave us many photos of that one baby.
When I picked her up from school the next day, she said to me "Today I was jumping up and down quietly and my friends thought I just liked what we were doing at school, but I was really so excited about the baby. Mom I really wanted us to have another baby."  I love that she is so excited! I asked her to wait a week to tell her school friends, and she listened. She was so excited to tell her friends and teachers! And she's been giving my belly hugs as often as possible...she even pats my belly during the sign of peace in church to give peace to the baby. She has been excited to read about the baby each week on Baby Center (we're in the middle of Week 19 right now...baby is the size of an heirloom tomato). She asks questions and tells us about the things she'll teach the baby. It makes me so happy to see her excitement!

How is Porter handling the news? Well, we're not sure what he understands. He was super clingy the weeks after we broke the news. Was it the fact that he had a cold, or that he recognizes that something is changing around here? When Penny hands him a baby and asks him to rock the baby, he smiles and rocks that baby. He loves to peek into the baby room at daycare to see the babies. And, he LOVES his cousin Codie. Hoping he is just as excited about his own baby sibling when he/she arrives! After seeing Penny kiss my belly so often, he now does the same and says "baby belly" or "kiss baby". If you ask him where the baby is, he points to my belly. And he's even told us that he thinks it will be a girl baby (we're opting for a delivery surprise).

There will be some big changes for Mr. P over the next few months. He'll move into a big-boy bed and a big-boy bedroom. He will take more responsibility for chores. He will walk (so close!). Perhaps he'll potty train (we're slowly but surely working on it). He will be a big brother. I'm excited and happy to see him grow!

Big Boy Bed


I was dreading the transfer to big boy bed. I remember what the transfer was like with Penny...she was much younger and much spunkier, but oh how I remember her getting out of her bed every few minutes to come see what we were doing and us leading her back and bedtime taking two hours before she'd finally fall asleep. Lucky for us, Porter appears to be much different from his sister. 
Last night, we made the transition to big boy bed in new big boy room. We followed the regular bed time routine and when we turned out the lights and turned on his music, he played with Elmo for a minute or two before falling fast asleep. He had a busy day celebrating his big 3rd birthday and he was tired. He woke in the middle of the night, unsure of where he was, but he fell back to sleep after some gentle reassurance. When he woke up this morning, the first thing he did was find his sister :) We will definitely have to try the green "Ok to Wake" clock to see if he'll stay in his bed until wake up time. But, overall, I'd say night one in the big boy bed was a success! Nice work Mr. P!