Friday, October 18, 2013

Donuts anyone?

The other morning, we stopped at DD to pick up some birthday donuts for daddy. The donuts were in the middle of the table and mommy was filling milk cups. I came back to find that someone's arms are much longer than we gave him credit for. He was so proud of himself!
Nothing to see here mamma!
Back off, this ones mine!

October is our favorite beach month

We don't spend a lot of time in NJ with Nic and Dave during the busy summer beach months. But come October, we love nothing more than to sink our feet into an empty beach and enjoy the amazing ocean! 
The beach in Manasquan, NJ is Penny's favorite- she can sit on the sidewalk with her toes in the sand and dig or color with sidewalk chalk.
Little man loved the shadows on the beach and the way the soft sand felt while he practiced standing and walking and even some crawling. I also fear he liked the way the sand felt as he ate it! 
We love the beach in fall!


As I'm writing this post, I'm not sure if I'll ever hit publish.  But I can't say our life is an open book and not talk about something that's forever changed me. I'm not writing this because I want people to feel sorry for me or our family. I'm writing because it's real, it happens, and the stories of strength that others have shared with me over the years, along with the two perfect gifts I've received in Penny and Porter, are the things that are getting me through right now.

This year's Buddy Walk was an incredibly difficult day for me.  Thankfully, we were surrounded by family and friends who helped me focus on celebrating the amazing gift that Porter is and not focus on the way Mother Nature was wreaking havoc on my body.

You see, in August, we unexpectedly found out we were expecting.  We were incredibly excited! We went to the doctor during week 7 and saw a little blob on the ultrasound with a healthy little heart beat.  I was feeling pregnant, which was reassuring. I had symptoms very similar to those I experienced while pregnant with Penny. I was exhausted and excited. I wanted to tell Penny right away, but something made me hold back.  Thankfully, we decided to wait to tell her. Instead, I spent so much time cuddling with Porter at night and in the early mornings talking to him about what an amazing big brother he would be.

The day before the Buddy Walk, I went to my doctor's appointment and the nurse couldn't find a heartbeat. "You're still early. We'll just hook you up to the ultrasound," she said to reassure me. I had gone to the doctor by myself that morning...we are always running in 5 different directions these days and we made arrangements for my sister to drop the kids off at school one day the week after so RC could come to the exciting ultrasound appointment. At that moment, I dreaded the decision and wished RC was there by my side.

I knew right away the news I'd be receiving. The ultrasound showed no heartbeat and a baby that had stopped developing around 9 weeks and 3 days. I was quickly sent over to the Ultrasound Center, where our favorite Ultrasound Tech and I shared some intense emotions. Having to sit in the waiting room, surrounded by happy pregnant women, was more than difficult. But, having Mary with me in the ultrasound room made things bearable.  When we were pregnant with Porter, Mary was my rock. I always felt she wanted my baby, which wasn't a feeling many in the medical community gave me. She did all my ultrasounds, my amnio and checked in on me during my non-stress tests. She came to visit Porter in the hospital the day he was born.  The detailed ultrasound confirmed what the doctor had suspected. There was no heartbeat and development had stopped at 9 weeks and 3 days.  Sadly, I wasn't the only woman receiving this news at the ultrasound center that morning.  But, that didn't make it any easier to hear.

With our doctor, we decided to schedule a procedure for Tuesday, the 8th.  That meant I had to carry the baby around with me for the weekend. In some ways, I think this was important for me. We celebrated Porter's life at the Buddy Walk and I celebrated just how far I'd come from two Octobers ago when I was a scared, nervous mom-to-be of a baby with an extra chromosome. Perhaps it takes experiences like this to really make you understand and appreciate the things you do have.  And what we have is awesome! Although Down Syndrome is a part of our life, it's nothing to be afraid of. In fact, it's something that we've embraced. Watching Penny and Porter grow is a blessing. They are gifts. They are amazing!

On the 8th of October, instead of heading to the ultrasound center for our exciting 12 week ultrasound, we headed in to the doctor's office to have the baby removed from my body.  It felt like they were ripping my heart out with it. I wanted so desperately for that baby to keep growing and to stay with me. But, I knew that this was the best way to let the healing start.  The thing I couldn't help but think of during the procedure was the number of women who voluntarily did this to living, growing babies like Porter. Women who made the choice to never let these babies fight for an amazing life. Babies who deserved a chance.  And I cried. I cried not only for myself and for our dreams of another baby, but for all the babies who didn't fit in the perfectly healthy category who weren't given the chance. I wondered if those women cried too. 

This baby, who is now watching over our family from Heaven, also likely had an extra chromosome- likely a third copy of #18.  But we'll never know for sure.  A wise nurse practitioner asked us if finding out would change our decision to try again some day, already knowing how we would answer. But, her wisdom was greatly appreciated!

I'm not even sure if people read this blog. And I'm not fishing for sympathy.  So please don't send "I'm sorry's" our way. We're sad, but we're not sorry.  We have hope. And we have a new guardian angel.  My hope is that someone who needs comfort can read these words and understand that there is hope for the future. That there are angel babies watching over all of us. 

October is Down Syndrome Awareness Month. It's also Infant & Pregnancy Loss Month. To all who have experienced this loss, know that you are in our prayers. Know that we share your hope.  And that we're attempting to turn our pain into something positive.  Spend time with family and friends. Make memories.  Show love and compassion. Love and appreciate the life you are living. Live it to the fullest.  Smile. And never give up hope!           

Wednesday, October 9, 2013

Thank You Porter's Peeps

We're still riding the high after this weekend's amazing Buddy Walk! THANK YOU to all of Porter's Peeps who supported us in person, via donation, or via thoughts and prayers this past weekend. We are so proud to be Porter's Peeps and are already counting down the days until Buddy Walk 2014. 
Mega-photo post coming soon. Until then, know that you've put a mega smile on this mom's face!

Long overdue- here is a photo recap of the day. We were surrounded by love from family and friends. From my friend Lori, who I met in gymnastics at age 3, to our amazing daycare and therapy team who we've only met since Porter's arrival, and from everyone in between, we felt the love. 

To Aunt Terra, who flew in from Oklahoma, and Grammy and Pa, who came from St. Louis, thanks for traveling to be a part of Porter's Peeps this year. To our friends and family who hopped in their cars in New Jersey, New York, Maryland and western PA, thanks for making the trip!

 To the Fitzpatrick family (especially Godmother Maureen), thank you for bringing the fun, as always! To our Villanova and Bloomsburg friends- thanks for always being there to support us.
To our therapy team, who devote countless hours to Porter, thank you!

 And, to Dr. Risa Roland and the team at Metropolitan Vet, we can't thank you enough for your incredible fundraising efforts.



We can't say thank you enough to each and every one of you who donated or joined our team. You have no idea what your support means to our family!

Thank you! Thank you! Thank you!

Saturday, October 5, 2013

Buddy Walk 2013 is tomorrow!

The Buddy Walk is tomorrow! We're getting ready!
If you'd like to join us or support us, click here: Porter's Buddy Walk Site
Thanks to all our family and friends who have helped us raise over $9,000 towards the Trisomy 21 Program at CHOP. We are in awe of the support and can't wait to celebrate tomorrow!

Down syndrome awareness month

October is Down Syndrome awareness month. To celebrate, I'm sharing a photo and something we've learned every day this month on Instagram (mammat10). I'll post a few here from time to time.
 Today's insight is about family- the bond Penny and Porter share is unlike any other. They are so alike in so many ways. She watches out for him at school- she checks on him during playground time. And he is ultra aware of her emotions. He learns from her examples and she teaches willingly. She knows him as her brother and loves him for everything he is. They are playmates and friends already.
Every child has their own schedule. While there are milestone ranges for typical kids, there are even bigger ranges for kids with DS. Penny walked before 10 months and Porter is not yet walking at 19 months. Regardless of when the milestones happen, we celebrate them. With Porter, perhaps we celebrate more because we notice more. We're more aware of the mechanics behind the milestones, more aware that he's working much harder to meet these milestones. So we celebrate the little steps on the way to the big ones. And we watch, mesmerized, at the way Penny meets her milestones so effortlessly. We're proud of them both and we'll push them both towards the next milestones, celebrating all along the way!
Confession- I stare too. When we see an older individual with Down Syndrome in public, I stare. I imagine I stare for the same reasons many others do- these individuals are different...I'm intrigued by the differences and I have questions about the differences. It took me a few months to have the courage to approach these individuals, introduce myself and share our connection. We've met some of the most amazing people by chance this way! Now we're sometimes on the receiving end of the stare. I'd love if people would come up and ask us questions instead of just staring! Share a smile, share some kind words, share that you understand that "a person's a person no matter how small!" So next time you find yourself staring, wave and say hi.

Understand that you, as a parent of a child with Down syndrome, like any other parent, have received the most amazing gift. You have the privilege of raising a child. They may not be the baby you expected when you set out on the journey to parenthood, but they are the perfect baby for you!

Thursday, October 3, 2013

Buddy Walk- Lehigh Valley Style

This weekend, Porter spent some quality time with his friend Devan as we walked on her team for the Lehigh Calley Buddy Walk. What a great event. As you can see, Miss Devan pulled the weight for her team :) "Get over here Mr. Porter!"
We had a blast! Nana joined us for the fun.

Penny and Kendall were supportive big sisters and had plenty of fun on their own! 

We walked through the beautiful park, celebrating these amazing individuals and all they've accomplished. We heard about an awesome partnership with East Stroudsburg University and heard some very cool success stories.

Most of all, we supported an amazing little girl :)

And we did it together. 

I hope Devan and Porter only get more involved as they grow older!

We'll support them every step of the way!