Don't be down on Down's!

World Down Syndrome Day is on 3/21 to represent the 3rd copy of the 21st chromosome

 

Today is 3/21.  Sounds just like any other day…but it’s definitely not.  Today is World Down’s Syndrome Day, the 8^th anniversary of WDSD. 

 

In October 2011 my childhood best friend went into labor with her first child, a son named Burke.  Just like all parents Olivia and her husband Keith were brimming with excitement to meet their lil man.  They had meticulously planned and prepared for his arrival and the day had finally arrived during Game 1 of the World Series.  That night Olivia checked into the hospital and all seemed completely fine and normal. After a whirlwind labor the proud parents welcomed the newest love of their lives.  Here is an excerpt from daddy, Keith’s blog:

 

Our son, Burke Logan Askin, was born on 10/20/11 at 5:01am. He weighed a healthy 6 lbs and 7 oz. He was 19 inches long. The doctor that pulled him out (he literally pulled him out with the vacuum) said he was a beautiful baby boy and looked good and healthy. NICU nurses were at the bedside, because Burke’s heart rate dropped a little too low each time mama pushed; thus the necessity of the vacuum. NICU nurses assessed him and they agreed he was a happy healthy baby. They were, however, a little concerned about his blood sugar levels and so they tested him twice. They prefer for the levels to be anywhere between 50 and 200. The first test was 49, the second 47. The NICU nurse told us she was taking him to the nursery to give him formula. Something about if it dropped too low, it’s harder to stabilize, etc. We were intent on nursing, so we were a little frustrated, but it didn’t seem like this was optional. Daddy went with him and Olivia’s parents stayed with her.

 

After running more tests, a shift change and LOTS of time Olivia and Keith were blindsided with news that would change the course of their lives forever:

 

The nurses attending to Olivia came in and told her we’d be making our way up to her recovery room and that they’d swing us by the NICU on the way to see little Burkester. Then 8:10 rolled around. 8:15…8:20…time was crawling and no one was coming to move us, tell us what was going on with Burke or anything. Finally, a neonatologist (Dr. Bennett) and a nurse practitioner showed up and started explaining his blood sugar and oxygen saturation situation. Both seemed pretty common, easy to get under control, just took time. Olivia was already in her wheelchair to be transported to her room. I was standing behind her rubbing her neck; it hurt from the labor/pushing process. After the blood sugar/oxygen explanation, Dr. Bennett said there was one more thing. Several markers gave them a pretty strong suspicion that Burke had Down Syndrome.

Since I was standing behind Olivia and rubbing her shoulders, I couldn’t tell what her reaction was. Then a tear drop hit my hand…another, then another…There I was confused all over again. This time the confusion had company: sadness, fear, anger. I tried my hardest to keep it together for Olivia, but my heart was breaking inside. What did this mean for my little guy? The guy I’d been dreaming of for nine months. In the matter of an hour, our worlds had turned upside down. The doctors and nurses gave us a moment to be alone and we wept together.

 

Olivia and Keith’s worlds was turned upside down that day and the word “normal” would now take on a new meaning for them.  The life they had envisioned was now different and the life they envisioned for Burke was nothing like they had imagined.  I have watched Olivia over the past year show a level of strength and courage that I have never known and one that I likely do not have.  She has dealt with emotions that she wishes no mother would ever have to deal with.  I have heard the pain in her words and heard her speak of her sadness, fears and anxieties. And through it all she has been very raw and honest with her feelings.  I have always admired my dear friend but since Burke’s birth I have grown to admire her even more.  One of the main reasons I so admire Olivia is that even though she, Keith and Burke are faced with some adversity she has channeled that adversity into a fight for DS research.  And while there is no “cure” for DS she is determined to help the progress of research.

Momma's boy.

Proud Poppa.

 

That’s where World Down’s Syndrome Day comes in.  This particular day is, of course, dedicated to global awareness of DS.  The organization encourages people all over the world to help raise awareness of what DS is, what it means to have DS, and how people with DS play a vital role in our lives and communities.  This is a day of awareness and celebration!  In typical Olivia style she has poured her heart and mind into supporting DS research and educating herself on any type of study, trial, etc.  In fact she just shared some amazing news with me about two drug trials (one in the US and the other that just started in Australia) that have had staggering results in terms of what they could do for cognition in people with DS.  Here are her words regarding the drug trials:

 

If the drugs are as effective as the researchers believe (based on the mice trials), he may able to learn and comprehend at the same level as his peers! You can't "cure" Down syndrome obviously but these drugs may mean that more people with Down syndrome are able function independently and to possibly decrease the odds of Alzheimer's (it's thought that if a person with Ds lives long enough, the will ALWAYS get Alzheimer's with symptoms starting as early as 40!).

I can honestly say that if they can give Burke a drug that would enable him to learn the same way as his peers, my fear about his future will be gone! I don't need him to go to college or make $50K a year, I need him to be able to function as a grown man and have a life that I dreamed of for him when I was pregnant. Some people with Ds are able to do that without pharmacology but many are not.

I just had to include this picture.  A mother's love...nothing like it!

 

So today, I ask my mommy friends to show your support.  Whether you repost this on your Facebook page, forward this blog post to friends, visit the sites I have included or donate to the cause we would love your support.  And because today, 3/21 is World Down’s Syndrome Day there are some great partners matching donations 3:1! 

 

Now the fun part…how can you join the cause and help?  Well it’s super easy.  You can either visit the Down’s Syndrome Research and Treatment Foundation (DSTRF),Olivia’s favorite group dedicated to furthering cognition in people with DS, to make a donation OR if you want to help and purchase a treat for your lil one you can do so by visiting Discovery Toys, a partner site (awesome toys focused on improving your child’s development).  This Discovery Toys rep will donate 21% of her sales to DSRTF and for all sales on March 21^st and her donation will also be matched 3:1!

 

 

 

Sweet Burke...time to celebrate you on 3/21!

 

I hope you will join in spreading awareness and supporting this cause.  Here are a few photos of Olivia, Keith and Burke as well as one last note from Olivia.

 

Even with the shock and sadness of a diagnosis of Down Syndrome, we are happy. Sure we have rough days but are they any more rough than a parent would have with a "typical" child?  Burke is funny and adorable and brings us an amazing amount of joy that we could never have imagined!  And he's probably the easiest baby on the planet.  Hellooo, my kid slept through the night from birth (if we let him!). Down Syndrome comes with some scary statistics and potential health issues but there are so many positives that come along with it too.

That smile never gets old, heartbreaker!

 

Such a beautiful family!  Love how hard Burke is laughing in this one!

 

Looking for kisses from daddy.

 

 

And for more information on DS you can visit the National Down’s SyndromeSociety or Keith’s blog (he’s a fab writer and will definitely keep you entertained).  Olivia has even offered to answer any questions via email (please post if you would like me to send you her email address).  We would love to see your support via comments to this post too!  If we get just ONE repost or donation than we have made a difference!

 

Thank you and happy World Down’s Syndrome Day!!!

 PS…hyperlinks are always included on anything that is bolded and/or underlined.  J