World Down Syndrome Day, 2014

Tomorrow is World Down Syndrome Day to raise awareness. A few nights ago, I was talking to Adam and he said, "It's weird how your never advocate for something until it directly affects you." It's sad how true that is. I never knew there was a day to raise awareness of Down Syndrome. Nor did I know much about Down Syndrome until this little booger joined us, but tomorrow I will be proudly wearing my 3:21 shirt.

Why does WDSD exist? Why must we have a day to flood social media and "old school" media with information about Down Syndrome? Why must we raise awareness and what is the end goal?

To live in a world where people with Down Syndrome or any difference aren't different at all.

Where we can see people as the individuals that they are and not the disability they have.

Where an expectant mother can receive a Down Syndrome diagnosis for her baby and not be so frightened to consider the easy way out.

Where parents receiving a diagnosis at birth can still celebrate the joy of having a baby, instead of mourning the loss of what they expected.

Where every child is treated as a special human, not only those with a larger medical file.

So, although this is my first year celebrating World Down Syndrome Day, and I am still a newbie finding my way, I plan on celebrating. Yes - celebrating.

I am celebrating that I have two beautiful, healthy children.

I am celebrating my supportive, loving husband, who is the only person I could imagine navigating this journey with.

I am celebrating the countless families that we have already met and will meet.

And I am celebrating the new person that I feel like I have become. I have a new drive to work like hell to give my children everything that they need and deserve.

Hopefully, we can all become advocates for a few more things. Why not? Why must we wait until we are affected to work for social change? And isn't Lent a perfect time to make a change is our mindset, perceptions, and actions? I know one cause we can all start with...

Unprepared

I realize it has been a VERY long time since I last posted, but I've made a decision to start writing more often, and this will be my main outlet.

When entering the world of parenthood, there is a lot of preparation that occurs. Reading, shopping, advice gathering, laundry, nesting, and setting up the perfect nursery.  And then you are handed a baby and realize that all of those articles online did nothing to actually prepare you! Yes, you may have 7 handouts on how to put your baby to bed safely, but you will still check on them multiple times and wonder if they are too hot, cold, hungry, gassy, or if they've spit up.  Then, you figure out a routine, get to know your child, and you quickly become a pro. This is exactly how I felt welcoming Molly into the world.

When Adam and I learned that we were expecting another little Hoff, we did little to prepare.  We were already pros! We set up Molly's big girl room and moved her out of the nursery only a few weeks before the baby was born. We knew how to be parents and felt confident that this other baby would be an easy task.

Unfortunately, we were no where near prepared for what lie ahead. No one can prepare you for the devastating news that your baby is not the healthy, screaming baby you expected. No one can prepare you for the uncertainty of what is happening when your baby is taken for observation directly after birth.  No one can prepare you for four weeks in the NICU and two surgeries. No one can prepare you for a complete overhaul on what you thought your future would look like.

We are slowly preparing, learning, and growing as we re-plan our future and learn how to best help Jacob. We know that the love and support we have received is making a huge difference and that the love Jacob receives helps him every day. We thank God that he has a healthy heart and that we have the support system we do. He is a healthy 4 month old, who loves to roll and "talk" to us.  We know our lives will be different than we planned, but just as full of love, laughter, and family. What more could you want?

Here are the milestone's in Jacob's life so far, and I promise there will be more stories as time comes.

November 5th: 
6:30 PM - start of contractions
8:30 PM - me telling Adam we needed to head to the hospital
10:30 PM - Welcome Jacob Michael! 6 lb. 15 oz, and 19 3/4 inches long

November 9th: surgery to repair duodenal atresia

December 2nd: surgery to remove bilateral cataracts

December 3rd: HOME!! Time to meet big sis

February 7th: He started rolling over (and now, he rolls across rooms and into things!)

As promised, I will be more frequent with this blog, but I had to introduce our gorgeous, 4 month old son.

Sidenote - I started this blog post at least a month ago and couldn't seem to finish it.  I'm glad I finally did. Maybe, that will inspire me to keep it up!