Share Your Story

 This post explains why my family and I walk.  I'm going to start by saying that I am a "take control and do what needs to be done" type of person.  Or as my husband would say a control freak.  I am not patient and I an unable to sit around and just wait for something to happen, I have to move things along.  So when I stopped feeling the baby move when I was just 2 days shy of 37 weeks it was scary.  I knew I wasn't in control anymore.  We rushed to the hospital and they got him moving again.  They decided to keep me overnight for test and observations.  I ended up being induced at exactly 37 weeks with no real concerns from the doctors just a speculation that he would need a few days in the NICU to strengthen his lungs.  Well that stay turned into two weeks, my baby was born with no primitive reflexes that all healthy babies are born with ( sucking gagging, swallowing) and he barely moved.  About a  week and a half later as we came into the NICU, the doctor greeted us at the door to tell us they had to "bag" Scott because he stopped breathing.  Than 5 minutes later we sat in a conference room with about 15 specialist all telling us that there was nothing they could do for Scott.  We left the hospital devastated, we gave DNR orders to the doctor before we left and than our hope turned to the question of when?  When do you make the most horrible decision of your life to take your child off of life support?  Our prayers turned from please help our child to please take our child so we don't have to make the decision.  We came to our decision on Father's day in 2012.  Two days later I saw my son for the last time you could tell he was close to taking his last breaths and I remember holding his hand and looking at him and saying, " I love that your a fighter but there is nothing left to fight for it's okay to let go." That was the last thing I ever said to my son.

After I got through his death, planning a funeral and attending his funeral, I just wanted answers.  The genetics doctor finally got enough results in that she could meet with us.  There were no conclusive results.  So now I had no living baby, and no diagnosis of why.  I felt lost.  There was nothing I could do.  I couldn't even find an organization that specifically  focused on his medical condition  to give my life purpose again because we had no diagnosis.  I didn't like that feeling.  I needed a purpose, a reason to honor Scott's life, for him to be remembered.

8 months passed and a friend contacted me from my MOM's Club saying she is forming a March of Dimes team for our group and dedicating it to Scott.  I knew nothing about this organization so I googled March of Dimes.  I got so excited.  I felt a little part of me coming back.  I yelled for my husband  to read about this organization.  It was something that we could finally be a part of in memory of Scott. They fund research that has helped so many babies.  Maybe one day they will fund research that will help babies like Scott?  They offer support and education.  It was exactly what I was looking for.  So basically that year I took over the team from my friend.  Luckily she didn't mind, then the following year we formed, Team Popcorn.  Team Popcorn is Scott's team.  It's our families way of healing together, celebrating Scott, and doing something positive in his memory.  I remember my mom telling me after all that had happened, how our surviving son freaked out one day when the phone rang, during the two short weeks Scott was with us.  He yelled, "don't answer it."  When she asked him why he said, "because every time the phone rings you and PopPop cry."  I hated knowing that it was usually me or my husband on the other line giving my parents more bad news.  Now with our new cause we could remember Scott with happiness and without tears.  It has helped our family be able to talk about Scott and it has helped my son be able to now ask questions and talk about his brother without fear of upsetting us.

As I continued to explore the March of Dimes website I learned of Share.  I hate that it took me 8 months to find Share.  Share is my new family.  My family that gets it, 110%.  I can say how I'm feeling this way, or thinking this and instead of everyone thinking I'm a tiny bit nuts they say, "me too".  With this new normal of mine I needed to hear that.  I still almost 3 years later need to hear, "Me too".

This is why we walk.  I want to help babies and other families.  I want to help a mom that I don't even know not have to say to her child that he is loved but it's okay for him to die. I want to help a family so that they don't have to tell their oldest child to say goodbye to their sibling for it will be the last time they will do so.  No family should have to endure that.  We want to help families have healthy pregnancies and babies that are able to come home were they belong and live the dreams that their parents had for 9 months.   We also walk because it's Scott's day of celebration.  He doesn't get Christmas morning or birthdays but we can give him the day of the March of babies and proudly say he was here, he was loved, and he is always in our hearts.