On April 30, I was able to attend my first "Heart Mom Luncheon". It was so wonderful, and such a neat experience. Although Conner was born before last year's luncheon, I hadn't discovered Intermountain Healing Hearts (IHH) yet. If any of you know of someone who has a baby who has any kind of congenital heart defect (CHD) or a momma whose baby has been diagnosed in utero, please, in a gentle way, ask if they are aware of IHH (if they live in Utah or neighboring states) or if they have found a local support group. IHH has been so amazing to be a part of. I have been able to meet so many other momma's who know what it's like to have their baby go through open heart surgery, or heart procedures and who have that specific understanding and the knowledge to help support me as a mom learning more about the heart and medical information than anyone really wishes to know. Being a member of IHH has truly helped me to recognize the blessing that Conner is, and how "healthy" of a heart baby he is compared to so many others out there. It is a bittersweet event when we as heart mothers are able to gather together to go support another mother who has lost her baby due to CHD. It has been a wonderful outlet to share special times with women who are in the same boat as I am- women who have been there and are able to inspire, give hope, and help give comfort.
The luncheon was so neat! We were able to take one guest with us- a woman in our lives who has been there for us along our heart journey and supported us. Naturally, I chose my mom to go with me. Everyone who attended got to have glitter toes done for free, so when we first showed up, it was the first thing we did! I chose gold and my mom got pink. Then we went and found a table to sit at. We sat with one of my heart mom friends that I had just met in person finally (I've been following her blog for a while) and she had her mom with her too. Cafe Rio catered the event, and it was so yummy! Just after we got our food and sat down, I noticed another heart mom who had just walked in that I hadn't met in person yet either (just through her blog) and I was so excited to see her! I invited her to come sit at our table and it was so fun to get to talk to these mom's and exchange stories in person! The president of IHH got up and gave a wonderful message of hope. She said to let hope fill our hearts and give us courage, and not fear. Then, we went around the entire room and each heart mom got to stand up, say our name, our child's name/age/heart defect, where we live, and who the guest was we brought and why. I think there were about 100+ or so heart moms, so it took a while, but it was incredible! It was seriously such a cool experience to be able to hear about so many other babies/children who have survived their heart journey's! And there were tears when mommas got up and talked about their 'angel' babies- heart babies who have passed on in this life because of their heart defects. I felt so inspired by them and what they have been through and how they continue to bless the lives of others by sharing their stories and helping us all to recognize our blessings a little more each day. The majority of the IHH group are moms who's children are fairly young because the group is only 3 or 4 years old I think. So it was so cool when one mom stood up and talked about her son who has a CHD, and talked about all his surgeries and what he has been through, and then announced that he was going to be leaving on an LDS mission in just a few weeks from then, and almost immediately, everyone in the room started clapping and cheering. This response happened because it is SO inspiring and feels you with SO much hope when you hear about teenagers/adults with CHD because quite frankly, so many of the surgeries that our saving our children now, didn't even exist 50 years ago! (some surgery's are only 10-20 yrs old!). Everyone in the room was just filled with joy in hearing about a 19yr old boy who is healthy and strong enough to go out and accomplish something such as a 2yr mission.
At the end of all the introductions, they showed us the little video they put together of the pictures we all sent in. We each sent in a picture of our heart baby post-op (a picture of them right after their heart procedures), a picture of them doing something they love, and a family picture. And of course they put our pictures to the neatest songs which fit perfectly, and OF COURSE we all bawled our eyes out as we watched our babies appear on the big projection screen. Sometimes, in a strange way, I forget that what is now so "normal" to me (open heart surgery, g-tube, NICU, hospitals, countless doctors, feeding therapy, occupational therapy, etc.) is not so "normal" to other people. And when I see my situation in a different perspective, it kind of jerks me and reminds me that what our little family has been through has been tough. I hope this doesn't come off sounding like "poor me, I've been through so much..." instead, what I'm trying to say is that sometimes I just realize that I've kept my emotions of stress, worry, and heart-ache bundled up and tucked away so that I can go through each day, needing to be a good momma and do the things that have to be done (i.e. If I want Conner to learn how to eat, I have no choice but to practice feeding with him several times a day, it's literally up to ME, it's MY job to teach this little person how to eat, and if I don't do it, no one else is going to, and he will be on a gtube for forever). When watching the video, Conner's post-op picture came up and I saw a little baby sedated, covered in tubes, in his mouth, nose, several in his chest leading to his heart, having just had a surgery to save his life... and for just a moment, I was able to capture what it felt like as a guest, looking in to a world unknown, and it broke me down and made me feel so vulnerable. It felt so different and foreign. It made me appreciate all over again how amazing Conner is and what he has been through. What we have been through as a family.
After the video we all mingled, took pictures and said our temporary goodbyes. I was able to grab some pictures of some of my heart mom friends who were there. It was so wonderful seeing everyone and getting to meet new moms and feeling so inspired. IHH has been such a blessing to our family, and specifically to me as a mom. It has helped to give me more confidence in myself and what I can do to help Conner and be the best mom I can be for him. I'm so thankful to be a member of this wonderful organization and thankful for the neat experiences I have been able to have through them and the amazing mommas I have met!
The beautifully decorated room!