Mar-Family

Although I try and keep things light and happy this is an "endure what you must" post and it is pretty lengthy.

David has what is called Marfan syndrome which effects the connective tissues in his body, mostly the heart and eyes. When I first found out about his condition while we were dating I didn't think much of it, but as things became more serious between us I had to figure out how this would effect our future together because it is a genetic disorder and all our children have a 50/50 chance of getting it. You can read a pretty good synopsis of my feelings HERE in a piece I wrote and was published in Marfan.org Connective Issues magazine.

Anyways, fast forward a few years and we catch up to the past couple of months. At David's last echo,sometime closer to the beginning of the year, his cardiologist was concerned with something and wanted a better look, so he scheduled a CT scan for David. The day before I had Andrew David went in for his CT scan and that was that. Just three short weeks after having Andrew David had a consult with his cardiologist. I decided to tag along as a way to get out of the house. Well one of my worst fears was confirmed: David was told he needed open heart surgery, an aortic root replacement to be specific. I still remember sitting there holding fussy/hungry Andrew just repeating in my head "don't cry till you get to the car, don't cry till you get to the car". To give myself some credit I did make it to the car but once there the waterworks started. I was sitting in the car feeding Andrew with tears rolling down my face. My life was flipping upside down. I had a new baby and now my husband needs open heart surgery. I had no idea how I was going to handle all of this emotionally as well as physically. I figured it would be like having two new babies in the house. The only thing we didn't have was a date for the surgery. I felt like this made things worse because until I had a date it felt like my life was completely up in the air. I didn't know if we would have to get the surgery done in the next week, month or when.

Well we now know. The surgery will take place on the morning of the 9th. As this time has been fast approaching there have been many different thoughts swirling in my mind. Before meeting with the specialist and getting all my questions answered my biggest fear was loosing David and him dying on the table. Most of this fear stems from the death of David's brother Andrew. He died at 27 and left a sweet wife all alone. Especially after just having a baby I was terrified that David would die and I would be left heartbroken and have to raise baby Andrew on my own. One night, after waking up to feed Andrew, I had this thought and had a mini freak out with lots of tears. Within a little over an hour I felt a cold sore coming on (a response that my body has to stress). Thankfully, after our conversation with the specialist this fear has been alleviated. It really helped to hear that David's chances of dying on the table are in the lower single digits. Phew.

Although this is a big trial in our lives I can say without a doubt that I know my Heavenly Father still loves me and my family. I know this because through this trial there have been many blessings. First our family. Since Marfan syndrome is a genetic gene mutation we have some of David's family members that have had the same surgery and we can talk about it and what to expect. Even better I can talk to spouses and parents  about their experiences and get an idea of how this will be for me. It is almost worse to watch someone go through a medical experience and feel helpless.  On top of these experienced surgery pros we have more love and support from our entire family.

Another huge blessing is that we have a great surgeon who is one of the best in the world at performing this surgery, and he is only 3 hours away. People fly in to have him operate on them and it was crazy to hear that some patients leave the hospital and head directly to the airport to fly home. No thanks. We are very blessed that he is so close and has even operated on David's brother Alex. Dr. Coselli is pretty great at what he does and I am glad that we are able to have he best working on David.

Not only do we have great family and doctors but we have amazing support from those around us. It has been almost overwhelming how many people have offered to help in one way or another. We feel your prayers, thoughts and good vibes. They truly do help through this whole situation.