Friday, February 18, 2011

My Heart Mom Friends that I am SO Blessed to have!

I got this idea from talking with one of my heart mom friends, Rhonda the other day so....Here goes:

When we were in the hospital in Columbia, we didn't know of anyone who had a child with a Congenital Heart Defect. Then we go to MUSC and meet some families who have children in PCICU. We met Sierra and Brent, whose son Montgomery was next to Lo in PCICU and Stacey and Jason, whose son RJ was also next to Lo in PCICU.

Then, while we were still at MUSC, Rebecca came into our lives. She was from the same town we live and she started Annabelle Baskets after her daughter, Annabelle, passed away from a CHD. Rebecca and her family have been great to us and I am so glad to call her my friend!

We got involved with Palmetto Hearts while at MUSC and met some great people through them too! Sara (founder of PH), whose son, Kaden, has a CHD became one of Lo's first heart friends. We also met Wendy and Jeff (Luci) through PH's family program that puts you with another family that has the same or a similar defect. We love Miss Luci! When we went to the first Heart Walk after Lo was born we met Abbie (Elijah) and Rhonda (Zeb) who have become great friends as well. When I first saw Rhonda at the Heart Walk I instantly felt like I knew her.

I met Mandy when she came into the pharmacy where I work and got a prescription for Evie. I couldn't believe that He was showing me families that I needed to be friends with. I was so happy to be finding all of these people who I could talk to, who had similar experiences.

Shannon, I have known for a long time. We used to work together then she moved to VA with her husband so he could finish up school and then when I found out she and Justin were having a child with a CHD I had to get in touch with her. Derrick is the cutest little thing there ever was and I am so happy to be a part of their lives.

Shannon, Abbie, Rhonda, Elizabeth (an adult CHD survivor) and I have started Hope for BraveHEARTS so that we could help fund research to help other families in our situation and maybe someday there will be a cure!!!! I know that we are here for any other family that needs to vent, needs advice or just needs someone to listen. We all are a family, a CHD family!

I have also read some blogs and continue to read blogs so that I can connect to other families out there who are CHD survivors and parents of CHD Warriors and Angels. Just this month I have connected to several people on facebook that are a part of the CHD family!

I have also met several Mom's and Survivors on Facebook and through reading other blogs. I am looking forward to get to know them better too!

I am also glad that Lorelei will have some friends who have been through what she has been through so she won't ever feel alone in the CHD world. It's awesome that we have all met and can talk and appreciate what we have all been through, some of us worse then others. When we first had Lo, I don't know about John, but I know I felt so alone and didn't know where to turn. I now know many Momma's and Daddy's that I can turn to in a minute if I needed them! I am Blessed to call them my Friends!

How CHD has affected my relationships.

This is coming from a Blog Event over at Stefanie's blog.
She asked her readers this question and so I think I need to respond to it!

My relationship with my husband, John, has grown in ways I never new were possible. When Lorelei was flown to MUSC that Sunday night, I knew that this was a make it or break it point in our marriage and we talked about it, since we couldn't sleep. He held me as I cried for hours about Lo. We struggle day to day like all couples but we agree to do what's best for Lo and our marriage. We try to communicate with each other and of course sometimes it's hard. We knew that this would be hard on us and we agreed to go with it and you know what, it has made us stronger as a couple and as parents. Of course, we argue I am a fly off the handle kind of girl but he has the patience and yes sometimes its an all out screaming fest but we ALWAYS work it out.

My relationship with my family, well that might be a different story. Everyone came together when Lorelei's diagnosis was made and I became tremendously closer to my in-laws. My sister, JD, couldn't come down from NY to be here with us but helped us by giving updates to friends and family up there and even collected money for us. She had just had a healthy baby boy so she was worried and tried to help as best as she could. Others in my family were there for us too but now some still don't get how serious it is. Lorelei has had 2 surgeries and there is always a possibility of another.

Friends, that is a hard one. I knew some people would not be there down the road, especially when I called one of my good friends when we got her diagnosis and she didn't even ask us how we were, she started talking about another friend who just had a baby! I was so furious and haven't spoken to her since. However, I have seen people I grew up with be there for me and those friends who I hadn't spoken too in a long time I have become close with again! I am also blessed to have met many Heart Moms that I get to call my friends (stay tuned for another post about them).

God, I have found Him. Before Lorelei, I believed in Him but didn't live it. I have now seen what He can do and I have become Catholic. I know I swore that I would never do it and not many people know that I have changed. I feel that John and I needed to be on the same page with this since He has a plan for my Lo, I just know it!

My relationship with myself has been a struggle. I keep asking myself what I did that made Lo's heart the way it is and I feel like it's my fault but I am getting better about this. I am starting to lean on the Lord and know that this was His plan all along! I was even jealous of my sister and my friends that have had children for having a healthy, "normal" babies, but I now know that life is too short and too enjoy my "normal" to me child.

John and I treat Lorelei like she is any other child. She gets punished when she does something wrong, she can do whatever she wants to do, within reason! She knows when she needs to stop and rest. We talk about her "zipper" and when she understands a little better we will always tell her the truth and treat her like she is normal, which she is to us!