Social Media/Expectations

When Jacob was born, part of me wanted to delete all of my social media accounts instantly. I didn't want to explain things to everyone. None of whom I expected to know how I felt. I didn't want to answer questions about why I hadn't posted pictures of Jacob and Molly together. I didn't want to see anyone's new baby and continually see how different my experience was. I wanted to talk to my immediate circle of family and friends and that was it. I wanted my family private. (Funny how I write this on a public blog, huh?)

I'm so glad I didn't ever hit delete. I took a long break, which I needed, but eventually it was really nice to return to Facebook and see the overwhelming support we had. Plus, it was the main way for me to connect to other families who knew exactly what I was experiencing.Since then, I have also met many of these families in person and gotten to know their beautiful children, both with 46 and 47 chromosomes.

It's still hard to get online and not compare kids. I read this blog post awhile ago, and although it's about dads, a few really hit home. Especially #7, which brings me to the second topic I've been wanting to write about - how we talk about kids.

There always seems to be expectation in people's voices when they ask about your kids. This is something I never understood before Jacob was born and I don't think I ever would have if I didn't have him. I've had that awkward silence when a friend says, "So, he's sitting up/crawling/all over the place/ babbling/etc by now, right?"

I know, I know, you are all thinking, 'no one means any harm by this.' True, but that doesn't mean it doesn't put me in a weird spot and make me a little sad when I say that he is 13 months, commando crawls around and is still working on sitting up independently.

Jacob has taught me SO MANY lessons, but one major one is to forget all expectations. Let's all accept differences a little more and forget our expectations. Jacob was probably 6 months old when a friend came over to visit. She joyfully asked me, "What's Jacob up to lately?" It made me so happy to be able to brag instead of correct what someone else may think he was doing.

On that note - let me brag. We have been working constantly to learn sign language, as a family. Molly is the resident pro over here. Jacob just recently began signing "more" when he runs out of Cheerios and it makes me smile so big every time.

Down Syndrome Awareness Month

Happy Down Syndrome Awareness Month!!

I'm so excited to celebrate this year and help educate others about Down syndrome. I am making it my goal this year to raise awareness through education about Down syndrome and totally awesome individuals with Down syndrome. I also want to welcome questions. I may not be an expert yet, but I know more about DS than I ever expected to! If I can't provide an answer, I would be happy to find one for you. Thanks to so many of our new contacts, I know many experts. Don't worry about a question you may think is offensive or silly, just ask.  It's always better to be educated and work to end stereotypes than to just wonder silently. I had a really close friend ask me why people with DS all look similar. While I know Jacob looks like us Hoffs and Belluominis, I enjoyed being able to explain the science to my friend - as best as this English teacher could.

Here is my first example of a totally awesome individual with Down syndrome (other than Mr. Jacob, of course). If you have 8 minutes to watch this video, please do. I promise you will enjoy it. Andrew is such a kind, determined young man. 

Also, check out his clothing at Group Hug Apparel.  I definitely plan to support his passion for helping others, while passing on a great message to "Be strong, rock on."

"What makes you different makes you beautiful"

I saw a link to this video and article earlier this week and it melted my heart. I welcome everyone to watch it.

I love how the mother sees the billboard as an opportunity to celebrate life, not brag about her daughter, point out her difficulties, or show off her beautiful family.

As she says, “I hope people see value in any and all life. I hope they get to see what I see in my daughter every day: a little, beautiful , happy soul. And yes, she has Down Syndrome, but I think differences in people need to be celebrated and we need to see the beauty in that.”

6 months old!

One of my little boogers is 6 months old today!

He still rolls all over the house. We recently had to get out the playpen so that he would stop rolling under furniture, hurting himself, and then getting angry. In his defense, I would be angry if I were stuck under the coffee table too. He babbles nonstop and has been working on sitting in his new booster seat when he eats solid food, which he does like a champ. He has enjoyed finding his feet and shaking rattles. I still get choked up when he smiles or plays with toys. Who knows if this will ever wear off. It'll probably just be replaced with other milestones that make me ridiculously proud. Be prepared to hear all about them!

The Little Things

Most of the new friends we have made told us that being a parent to a child with special needs makes you appreciate the little things much more. Every milestone is noted and celebrated. While parents expect their typically developing children to hit every milestone at a certain age, it's all a surprise with a baby with special needs and so much more exciting. Plus, they must overcome so many obstacles, that you can't help but be extremely proud, even if the achievement is as simple as reaching for a toy.

I may still be a hormonal mess, but the little things really have begun to amaze me even more. Jacob had his first cold over the weekend and all I could think about was his time in the NICU and how badly I did not want to end up back there. Saturday night as we were getting the boogers ready for bed, I found myself choked up. What happened you ask? Jacob's temperature had lowered and Molly was dancing around to "Let it Go" after watching Frozen. Watching her pure happiness and seeing my baby finally more comfortable, I couldn't help but be thankful.

Every time Jacob smiles at me (it's rare) I get a lump in my throat. Today, I watched him reach for toys for probably ten minutes, smiling the entire time.  A little while later, he puked straight down my sleeve, while also pooping - showing me his array of talents.

I loved watching Molly grow into the wild toddler she is today, but I know watching Jacob develop will be quite an adventure. I think investing in Kleenex may be a good choice.

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!