With the arrival of the Easter season I am constantly reminded of what this time represents: new life. For the past couple of years, it has been a ‘new liIMG_1349fe’ in more ways than one. This past weekend I saw my Grandma, Mom and little brother baptized, taking their first communion on Holy Saturday – the sacred space between Good Friday and Resurrection Sunday – a reminder to me that it is never too late for new life to emerge. About 15 weeks ago I came home to a cake that read, “Congrats Daddy.” The good news was kept a secret until a couple of weeks ago when we took Evangeline to Disneyland for the first time and made the announcement: G-money is going to be a big sister. Roughly 24 weeks from now we are going to have another Dang baby. New life, in it’s most literal sense. Between now and then, it is a threshold to enjoy, savor, and to prepare.

The decision to have another baby knowing that each child was going to have a 50/50 chance of inheriting the gene was not a decision that we arrived at lightly. We wrestled with it back and forth, but in the end, it came down to whether or not we were going to live in fear. The reality is, there are many families in the world who have genetic challenges who make the decision to grow their families. To live in fear would mean going against the guiding principles underlined in the past year of my life. Hannah‘s dad wrote me on Facebook giving me hope that it will all be O.K. even if my children have the genetic mutation. This puts special emphasis on how important it is for me to journey through this stage of my life well. On another level, perhaps in the next 10-15 years medicine will have better screening techniques for HDGC.

Another Dang Baby
Another Dang Baby

In our early conversations with doctors, we were given many options to consider in regards to CDH1 and pregnancy including early DNA testing, IVF, and other genetic options. From the beginning, Kate and I wanted to go about this pregnancy naturally. The bigger decision for us in the process is whether or not we want to know if our baby has the gene mutation now, or if we want to wait until much later in life. Sometimes it feels like the decision comes down to which will give us the least amount of anxiety: knowing our baby has CDH1 and not doing anything about it until after high school, or wondering whether or not our children have the genetic mutation until they are tested at 14? The benefit of knowing now also means knowing we do not have to worry if our children test negative for the gene mutation, and if they are positive, knowing how to prepare our children as they grow up with an awareness of CDH1. In the end, I do not have to work too hard to be reminded by Evangeline everyday that she is more than the sum of genetic coding. Moving forward, we are going to choose not to let CDH1 dictate our lives.

This weekend I will be competing in my first triathlon without a stomach. In September, I was supposed to compete the weekend that began one of the worst months of my life. I am simply looking forward to crossing the finish line and putting CDH1 behind me. With all of my training, I have been able to gain back some muscle mass and some weight which now puts me at 165 lbs. In regards to my diet and eating, I am finding that my diet has diversified quite a bit. I eat raw spinach and vegetables and peel off skin as much as a can. I find, however, if I eat red meat too many days in a row, that I will have very bad intestinal cramping, so I try and limit my red meat intake now to one meal every few days. I stick mostly to chicken, eggs, fish, yogurt and nuts for protein, which is probably healthier anyways. So far, spacing out red meat meals has put the intestinal cramps at bay. Sometimes I get a little to enthusiastic about dessert or forget that certain drinks contain a lot of sugar and get dumping syndrome, but over all, my sugar intake has increased to enough to make living with no stomach manageable, because you don’t understand, I love ice cream. Love it. I am still getting bile reflux at night (I get relief by sleeping in a reclining position and manage with carafate) and I still suffer from insomnia, but over all, I feel like I’m adjusting well given the circumstances.

To new life, from the Dang’s to your family!

-Steve

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