A Dose of Reality

So today, Mike went to the doctor because he was feeling like he was starting to come down with something. So after explaining to the DR why he needed medication to nip this sickness in the bud because of his "heart baby" at home, the DR asked more about her. Mike told him that she had DiGeorge Syndrome. The DR's response was, "Wow, and she's still alive!? That's amazing."

Hmm...after he shared this with me, we both felt it wasn't the vote of confidence that we might have been looking for. You know it's just so easy to get back into life and watch Brynlyn do well and not get sick and start to feel some "normalcy" return to life. And then you hear that comment and it brings you right back to what you're doing right now: trying to keep a sick baby from getting sicker.

It just makes my heart heavy and I found myself an hour later searching the internet for mortality rates for DiGeorge kids. (I haven't done that in a long time-like 9 months.) It is true that many DGeorge kids do not survive this genetic syndrome because of the many things their body is fighting off all at once. Many DiGeorge babies die within 6 months of birth because of their CHD (heart defect.) Either their body cannot handle the extra load on their heart and their heart gives up or the defect is detected too late and these babies end up dying at home within a few weeks following their birth.

Then there are the babies/kids that die from reoccurring infections to the body that they can't fight because of their immunodeficiency. I have been told many times that Brynlyn's struggles early in life will not be her heart condition. Her primary struggle for the first 3 or 4 years will be staying well and healthy while living in a world of sickness and infections.

Keeping her separate from the rest of the world is absolutely the most difficult thing we have ever done. It's tough and takes lots of arranging and missing out on things and less time as an entire family together. These are sacrifices we are absolutely willing to make for a few years in order to keep Brynlyn healthy and infection-free.

Since I can never imagine ever losing Brynlyn, I have to just quietly tell myself that she is 100% in Heavenly Father's care. She's such an angel and a teacher and a supporter to her Mom. =) I have to just remind myself that she has a mission to accomplish on this earth and she will not go before she has accomplished that mission. I'm just hoping her mission takes her a looooong time, like atleast another 80 years or so.