I am a survivor.
Tuesday, July 26, 2016
I am a survivor.
Tuesday, August 11, 2015
Thursday, July 16, 2015
These are the words that I shared at Ryan's celebration of life on July 17, 2015.
I wasn't sure how I was going to write something for today so I thought I would treat it like I was writing a blog post. Like usual, the thoughts are scattered and the I's are we and the me's are us.
I often think to myself, how did we get so lucky?
I want to start by telling you about how my morning went May 1st, the day Ryan was born. It's proof that God prepares us for everything in life and sometimes we can recognize it and sometimes we can't. God was preparing me for Ryan's arrival that evening since the second I woke up. I woke up really early and was scrolling through Facebook. Someone liked an article that was titled "bad things make good people stronger". I texted the link to my mom and friend Melissa telling them how amazing the article was and to take 5 minutes to read it. Before leaving for work, I had Shawn take the normal 20 belly pictures since we forgot the day before and I was 24 weeks! Shirt up, shirt down, tank top only, to the left, right, you get the idea. On my way to work I stopped at my favorite place, the bakeshop on kelly street for a treat, it was Friday, why not, iced coffee and a bagel sandwich. While I was waiting for my food a Middle Aged gentlemen began talking with me asking if I have ever been here before, have I gotten anything besides breakfast? I told him a cake and one thing lead to another he asked when I was due, is it a boy or girl, on and on. It was a really nice, refreshing conversation. The guy reminded me a lot of my dad. The guy ended the conversation saying that my husband and I were going to be great parents when the baby comes. I drive to work and as I'm walking in an older gentleman says good morning with a huge smile on his face. So sweet.When I got into work I was thinking how great of a morning I had and how those two gentlemen were so kind and made me feel so good about the day. I wanted to text Shawn to tell him. Then someone had tagged me in a video on Facebook that was parents being interviewed giving first time moms and dads advice on raising their child. I was in tears at my desk, the video was amazing. Perfect morning....I’m feeling great....Fast forward to 8:30pm that night, Ryan was born. God was preparing me for that moment since I woke up at 5am.
The day before Ryan passed; I had left work early in the morning because I just wanted to be with Ryan. I couldn't be at work anymore. I spent almost 12 hours at the hospital that day and I'm so glad I did that. I had no idea what the next 24 hours had in store for us.
When we first started this experience Shawn and I changed our mind set from "why us" to "ok what do we need to do, Ryan needs us to be strong." We did everything we possibly could to keep ourselves in good spirits. The nurses helped a lot with that. When Ryan had his first Brady- extra low oxygen and heart rate, I’m talking trickling down into the 40's, I turned white and my feet got cold. As they continued to happen you get more used to it, as weird as that sounds. The nurses would often say that Ryan was being naughty. LOVED THIS. Just made the mood a little lighter although he might need to be bagged ahhh a day in the life of a NICU parent.
A little bit about Ryan: If I could describe Ryan in one word it would be awesome. Sounds boring and cliché but he truly was awesome. He had the best personality from the day he was born. He was a ladies man, the nurses professionally argued over who would take care of him each shift. He was easy to please, leave him alone and keep his diaper dry. He was often described as feisty by others, I loved that. No one wants a boring kid. Ryan had 3 isolet and crib mates, they were aloshis best friends, pickles, spangle and 2%. He would let it be known when he didn't want to be touched and he loved when the room was pitch black. If a light was on, he would know.
One of the greatest things about having a heart and oxygen monitor on Ryan was that you knew when he was happy and when he didn't like something. He had his favorite sleeping position, on his belly and if he was ever on his back, he needed one arm out. He liked lying on his side, but not facing the door. He was hilarious. When Shawn would hold Ryan he would run his beard on his head, as Shawn would call it comb his hair. And after that, when Ryan would have hands on, the nurses would comb his hair with an actual comb. He loved it! I know on the blog I said Ryan had blue eyes, we actually discovered last week that they were brown, exactly the same color as his dad's. Ryan had soccer legs and basketball hands; this isn't a joke, a perfect mix of his mom and dad. I was telling one of the nurse practitioner's one afternoonabout Ryan's soccer legs since he had grown so much since she last saw him. She turned to him and said "no pressure" Ha. We joked a lot! He would kick....hard....when his diaper was changed. I always said we were in for it when he hit 7 pounds. Ryan slept a lot! When we would get to his room we would always said hi and lift up his face cover. Ryan knew our voice and would always just crack his eye open just enough to let us know he heard us. This was one of my favorite things he did. Ryan loved holding Shawn’s finger, particularly his pinky.
We had our jokes, you know your baby is a preemie when you brag when he gets man boobs. When Shawn would recline back in the chair while holding Ryan he would open his mouth and say grapes please. The nurses would ask us if they could get us anything once we were settled to cuddle Ryan and Shawn would always say, a pizza or some type of food. When Ryan was fed, Shawn would always ask Ryan if he was ready for his vanilla milk shake. I could go on and on…
Shawn and I are so proud of Ryan. Ryan knew love and that is the best gift that any baby or life could ever receive. We are so thankful we got to hold Ryan as he passed, say our goodbyes and have him baptized. It could have been different. Ryan had 3 major surgeries that he made it through. I told myself I would never complain about anything after seeing what Ryan went through. He showed us what true strength and determination were. He really was so strong.
Shawn and I were proud to be NICU parents. I was proud that we were there every day. I was proud to say we were in Boston for a short time. Shawn and I said while we were down in Boston that it will be nice to share our experience with others one day that have to make the scary trek to the city. We looked at it as another badge of honor for us.
Shawn and I are forever thankful for the staff at the Elliot NICU. They welcomed us from day 1 and provided 5 star care. Besides being my therapists while I was there, they were adoptive moms and grandmothers. They cared for Ryan like he was their own child. As difficult as it was to leave Ryan at night, we knew he was in good hands. Ryan had rules he had to follow in order for us to leave for the night. His oxygen level needed to be in the 90's and his eyes needed to close. He knew when we were leaving and would always stare at us, so fresh. The nurses would hold Ryan's pacifier for him for hours, talk to him and read to him.
Truly....Thank you all from the absolute bottom of our hearts for the prayers, donations, flowers, messages, and texts just telling us you were thinking of us. We were able to spend every minute we wanted with our son Ryan because of all of you. That is how we got through the last 70 plus days. Every single person in this room is special to Shawn, Ryan and I.
We are so thankful for every single person we met while traveling down this path in life.....the Elliot NICU.....walking angels...Shawn and I have a guardian angel for life...Ryan, we love being your parents...thank you for making me a mom.....so again I ask myself, how did we get so lucky?
This is the story that was shared at Ryan's celebration. This was Ryan's purpose on this earth.
The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this, it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer, to unlock this love, to create this miracle, for the good of all humanity.
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.
Thus at that moment the brave little soul was born into the world and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys. Some regained lost faith, many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."
Saturday, July 11, 2015
Monday, July 6, 2015
This morning when I was talking with a nurse while holding Ryan's hand I told her that Ryan has been through hell and back and I'm so happy he is, for the time being, catching a break. The nurse looked at me and said "and you and Shawn have been through hell and back." I try to stay positive through this entire thing but it actually feels good to say out loud that we have been through hell. I do a good job to keep a straight face walking around even when I have felt like we were at rock bottom. I don't want to make people upset letting them know how bad and difficult things have been. It's easier to keep things to ourselves. I always try to tell myself though that things will be better and Shawn reminds me of that everyday. We appreciate every second of good when we have it, even if it is in fact for 10 seconds.
Last weekend Shawn and I grabbed a bite at Billy's before heading home. There was this little boy that was sitting behind us and he was bouncing around in the booth. The Dad apologized to us for his son being loud. We did not care one bit. That night/3am I saw a post on the NiNi Bambini facebook page that said "Nini community a fellow mom needs our help" I recognized the young boy so I clicked the link. It was a go fund me page with a family picture with the young boy from Billy's. His mom was 24 weeks pregnant with their second baby. She was having some complications and she was out of work earlier than expected and the father was also recently out of work from a surgery. Long story short, the doctors had to get the baby out so they had her go into labor. In a weird way I was so excited that another 24 weeker Mom would be in the NICU with me. Shawn and I were looking forward to bonding with another family that would have been going down a similar path as us. Even when someone has a baby at 28 weeks, it's not nearly the same. I kept checking the page to find updates and eventually they did post that the baby did not survive, just over 1 pound. This hit Shawn and I hard. It was a reminder for how lucky we are to have Ryan in our life. When you have a baby at 24 weeks the chances of survival are slim and as a the days/weeks pass, the rate increases. I am so proud of myself for being so disciplined during my pregnancy that Ryan was so string even when he was born at 24 weeks.
It felt so good this weekend for Shawn and I to hold Ryan like a real baby.
I'm hoping tonight we can lite our giant neon sparklers we bought this weekend for the 4th. They have been staring at us for 4 days on our kitchen table.
xo- Andrea Shawn and Ryan