So, I am going to try to separate both aspects into 2 parts, and hopefully do both of those for you today. First, on a social level, finally meeting parents who I have had these strong friendships and deep connections with, to the opportunity of making new ones. The second part blog will go into detail of the Learning Session topics itself.
PLEASE contact your teams and get involved. No team invited me along with them. You may even reach out to your child's Cardiologist and still not be invited to come with them (Hey, that happened to me lol). If your heart is set on having this experience, don't give up. The Midwest Heart Connection held a scholarship and that's how I was able to get there. You also can contact Kay Fricke, who is the Parent Engagement Coordinator, aka the most helpful person who solely focuses on us parents. I hesitated to really commit to this because I am not a professional anything (high school drop out, stay at home mom). I feel super uneducated in comparison to other parents who come. But what I realized is that's the perfect recipe. To be honest they want more diversity among the parents. So please don't feel like you wont fit in, or have anything to offer. You are a parent to an HLHS child, so you fit in. Period. ♥
First I will talk about meeting the other parents in the Family Advisory Committee. We have been having frequent conference calls with each other and countless emails. These parents are Nikki, Stacey, Julie, Diane, Travis, Trent and myself. We come from all different parts of the country and different backgrounds and journeys. For me, meeting them all in person was a blast!!! We just work so well together and it actually does feel like we've been friends for much longer than what we have been.
We come to this Learning Session, Centers all in the Collaborative- Nurses, Doctors, and Parents, ect... uniting from all different parts of the country for one thing. To improve the survival of Interstage in HLHS. When you put it that way we're there for the heart angels. For Anya, for Demyni.
For Lily Grace and for Ethan. For Brooklyn and Alyssa. For every baby that passed away before the Glenn.
"I just want them to know that I gave my all, did my best, brought someone some happiness, left this world a little better just because- I was here" - Beyoncé
Friday night, the attending parents went out for dinner and drinks. I finally got to meet Sarah, who I "met" in an online support group actually before Cecilia was even born. Sarah is the mother to Corinne Rose. I make these 2 scrapbooks for Cecilia. Heart Friends I started while she was Interstage to help me cope when my husband had to return to work--- and I wasn't able to be at Cecilia's bedside very often because we had no one else to care for our other 4 children. It hurt me so bad to know she was in there alone. So I made these pages, stories of her heart friends from around the world, so she had something to look at in her life to remember she isn't alone. A lot of the parents to the children in this book were there ♥....but I couldn't forget the Angels. I wanted to do something for these parents, to know I think of them often and that their baby will not be forgotten! So I made a book for them too. You can see all of the hearts for Angels here. Meeting Sarah was one of the best moments for me. She wanted me to know what I did---just how much it meant to her ♥
Sarah and I at dinner.
The dinner was so much fun...laughing about things that no one else will get unless you have been through this process....sharing our stories and it doesn't matter how many families I meet, each of them amaze me. I got to make new friends too. I got to meet adult HLHSer, Meghan! She is like my hero. Never letting HLHS stop her from living her life to the fullest.
I got to hang out with a lot of the Sisters By Heart. These are special Moms who were there for me in support groups all the time, in every chapter of Cecilia's journey! hanging out with them = epic ♥
Last but not least, my roommate Jennie, mom to Tyler. It wasn't hard for us to get along, we're both outgoing and fun. While we didn't know each other that much before signing up to be roommates, I'm so glad that we did! We were both exhausted on Saturday, yet decided to take a walk in the city before dinner. That was a lot of fun and cool just to be out and about in downtown Cincinnati exploring... but I just think the conversation we are able to have made everything more awesome.