I seem to be hit the hardest when I think about Ryleigh’s future, I can see the long-term picture, her prom, her first love, her first child, and I wonder will it all be as it should. Will she have heartbreaks with boys and what will it do to her heart? So many unknowns, it is scary. Most people can only see to her delivery and first surgery, but there is so much more that will occur in our daily life that those not walking this path will never know.
Maybe I am emotional because I know we are about to begin another round of doctor visits this week and they are a high point of contention and anxiety for me lately. I talked with one heart mom who did not know if it was better not knowing before birth or knowing. I think knowing helps prepare for delivery but with that comes a lot of sad emotions and stress, not knowing means having a pregnancy that is full of joy and planning for the future, but leaves a bit of panic when the baby is born. I get nervous when I think about the scans now. I am afraid they will see something else. It seems as we get closer, we are going to more and more specialists, which is fine as they are getting prepared to take the best care of her when she is born, but it doesn’t ease my anxiety at all.
I think the moral of this post is to share that you will have anxiety and you will have fear, but it is ok to have good and bad days and if you feel like crying let it out – trust me I try to hold it in and it backfires. Oh and try to stay away from sad songs on the radio! We went to the Clay County Fair this past weekend to see a young woman perform, she is a heart baby (well 19 now) and we got to meet her family. They have been a huge support for us; we have joined the local Mended Little Hearts support group and are excited to meet more families sharing this journey. Best advice I can give to others going through this is to get support from anyone that will give it. Gain knowledge and understanding, come to terms with the future, and most of all look at the positive side of it – these kids can be amazing in their own way.
Here is a photo of the young women we met – her name is Siarah and she is an aspiring country singer – she has a beautiful voice, and yes it was cold that night which is why we are all in sweaters!
Till next post…be well my friends.
|Sairah, Lee Ann, Cael, and Craig|