Five years ago, we were in a pretty advanced NICU…….They had parent-centered care, Kangaroo’ing, rooming in, etc. It became home and the nurses were family. There were no scrapbooking nights, very little parent interaction with each other outside of the pumping room (or milking room as we affectionately named it). There was a parent support group, but it was not highly advertised, not strongly encouraged. And there was no SHARE for me to go to. We struggled through our rollercoaster ride, brought our baby home, and spent the next three and a half years in our own preemie world.
When we moved to San Diego, I had to quit my old company which I’d been at for 10 years. I found a job at Farmers. As most of you know, they are active with the March of Dimes and WalkAmerica. The Prematurity Campaign started my first year at Farmers. I missed the kick-off presentation for some reason that first year, and didn’t get involved……The next year, I was four weeks away from delivering Ethan. When the WalkAmerica committee in our office asked me to speak at the presentation, I jumped at the chance. You can tell people about prematurity in general, but to have a real life story from one of their co-workers would really get them going. So I spoke about Ryley, and was completely shaking by the time I was done. How had I not dealt with all of this? At that point in time, I still didn’t really have time to “deal” with it, and I didn’t have time to get involved in MOD…..four weeks later, Ethan was born and we were busy with three young children and life in general. But I kept MOD in the back of my mind, knowing it was time to start giving back. MOD had helped develop the steroid shots and surfactant that had saved my oldest son. I wanted, I needed, to start giving back. Fast forward to last January…..I knew WalkAmerica was coming up, so I logged onto my computer and found the March of Dimes site. At the bottom, there was this button called Share Your Story. I clicked it and low and behold…….a whole board full of people who knew EXACTLY what we had been through, what we had and still were experiencing. Soon, I was on SHARE everyday, doing live chats, and talking to my husband about my “friends” who had preemies.
In September, I got the chance to meet some of my SHARE buddies. What a day that was! These friends had given me support, listened and understood as I began to finally emotionally heal from having a 26 weeker.
In just over a week……10 days to be exact…..our first SHARE Union will begin….If you haven’t already, I hope you will click on the link on the home page, or in the Get Involved area to get more information, and think, seriously consider, joining us. I can tell you that the friendships you develop over the computer lines of SHARE do carryover in person. It’s completely amazing……The plans we have for Monday’s sessions, the Reception and Remembrance Ceremony will fill your heart, will honor our children, and will help you find your NICHE as a volunteer for MOD. Tuesday’s media tour will be a day to remember.
I can’t tell you how excited I am for this trip, this gathering. I can’t wait to once again see my friends that were in San Diego in September, and can’t wait to finally meet in person many of the other friends I have made on SHARE. What a time it will be!