I want to thank you for the emails and the cards and the thoughts and prayers you've sent my and my family's way after the death of my nephew, Sammy. There's not a day that goes by and I doubt there ever will be, that we don't think about him and smile. His legacy will live on in the amazingly talented and supportive team who brought him to us safely. The Perinatal Palliative team at Bringham and Women's Hospital in Boston is completely volunteer. It's made up of doctors, nurses, social workers and chaplains who simply know there's a need to wrap their arms around moms and dads who are faced with a lethal diagnosis of their child. Sadly, parents aren't always referred to these teams because even the doctors aren't aware they exist. By making the already existing teams stronger, they can work to get more of them out there...like here in Madison, for instance. My brother and sister-in-law are so thankful for the direction and support they received from the team in Boston. Not a day goes by, nor will it, that they have any regrets about the educated decisions they were able to make for their son, thanks to this team. Click here to read Sammy's story and if you're so inclined, make a donation.
As a new mom I had many, many wants and hopes while I was pregnant. Most of all, I prayed I'd be able to breastfeed my son. I had lots of friends who weren't able to and between the health advantages and the bonding that takes place, it was very important to me. I didn't cry when Everett was actually born, I cried the first time I was able to nurse him...my prayers had been answered! It's been quite the ride.... Those first couple months I felt like all I did was sit and feed our son. I would ask Marc to pull on my legs and arms just to stretch them. Then there's the journey down the hallway here at work, breast pump over my shoulder and cleaning supplies in hand. It's definitely not easy to tune out the world and get into the mindframe you need to be in for pumping. It's exhausting to say the least yet the most rewarding thing I've ever done. I share this with you because it's National Breastfeeding Month. Ladies...hold your breast pumps high! I salute every single mom who wanted to, attempted to, succeeded at and closed the book on breastfeeding. Please use this month to support other mamas working hard to do the best they can for their babes.
Samuel Paul was born on Friday, 8/10 at 3:29pm. He was 4 pounds, 13 ounces and was 17 inches long. He was beautiful...I mean REALLY beautiful. A perfect nose, a perfect belly button, two perfect feet and 10 perfect fingers...just a set of lungs that never learned how to do their job. To say hello and goodbye to a sweet little soul on the same day is gut-wrenching to say the least. There are parts of my being that feel empty; missing my nephew. There are parts of my being that feel full; knowing he's with us forever through the grace of God. I'm trying to cope in the truest form of the word...with honesty. Knowing I can't manage grief but by trying to take it by its horns and holding on for the ride. In order to get to the 'good side' you've got to really munch on the hard stuff and deal with it. I think then and only then, can you finally some day take that deep, cleansing breath and figure out how to live with the forever pain that's so real right now.
The staff at Bringham and Women's Hospital in Boston is filled with angels. They allowed Brad and Julie the time and space to do what they needed to do and in turn created memories that will last a lifetime and beyond. One of the nurses actually had Friday off but came in to help with the delivery because she had gotten to know Brad and Julie along the way. Now I Lay Me Down to Sleep was there to take pictures that we'll treasure forever. Sammy opened his eyes for his mommy and daddy and gave a good squeal when he first made his grand entrance. The minute he snuggled in with his mommy, he calmed down and just chilled out.
I have pictures on my phone, I have images in my heart, I have dreams from my soul. Sammy has taught our family so much...most of all true, unconditional love.
It was an honor to have been able to be a part of your life Sammy. Auntie Netty loves you!
Thank you for your thoughts and prayers.
A few weeks ago I told you about my nephew's lethal diagnosis of Thanotophoric Dysplasia. My brother and sister-in-law have been amazing in this journey that's been tossed in front of them. They've wrangled with the initial diagnosis, tasted the raw emotions that come with it, reflected on what they've learned and now it comes to this...the birth and the subsequent death of their son. They just got word that they'll need to induce very soon because of a couple different reasons but it's all happening so fast. Marc, Everett and I along with my mom and hopefully my sister will jump on a plane and head to Boston asap with the fleeting chance that we get to hold his sweet soul in our arms for even a minute to kiss him and tell him we love him to the moon and back. My heart is so heavy as my one and only prayer is that they have a peaceful delivery and that Brad and Julie get to see his face, touch his toes, kiss his forehead, rub his belly and that they're able to remember those amazing experiences forever and ever. Please hold our family in your thoughts and prayers as this journey on so many levels is coming to an end and yet on another so many levels is just beginning.