I’ve really wanted to post about your amazing gift to our family, but I’ve had a hard time deciding what to say. Surely, many of us have moments of definition in our lives, where we are able to say, “before this happened, I was one way; but, afterwards, I was different.” The largest moment like that in my life was when the doctor stopped on my way into the NICU in Las Vegas and said, “There’s something wrong with your baby.” Since that time, we have bumbled our way through anger, relief, remorse, curiosity, grief, bewilderment, joy, helplessness, despair and hope—all many times. First I tried to juggle a full-time job, caring for Maddy as best I could while she was in the hospital, and saving energy for Richard and Corbin when I got back from all that. Then she came home and there were a minimum of two doctor’s visits along with numerous home visits from therapists and nurses every week for months. On top of (between Richard and I) keeping watch over her 24 hours a day because she was being tube fed and would often reflux and aspirate (inhale) her own vomit. It was the strangest juxtaposition of emotions because there was the unbelievably ecstatic joy of having a newborn, but it was coupled with a great deal of worry and fear. We couldn’t even take her anywhere for the first eighteen months of her life because her health was so fragile. But we just kept holding onto hope for her. We kept holding on to the idea that, once we had gotten through all of these corrective surgeries that she required, she would be a healthy, normal child. Of course, what I didn’t realize then was that she will never be a “healthy, normal child.” Our daughter has a genetic disorder and she will never get “better.” However, her everyday health is remarkable—she gets the sniffles now and then, but she certainly doesn’t seem to be more prone to illness than anyone else. She is also a bright, happy little girl. But she’s not typical, and probably never will be. She doesn’t speak very well, which seems to be related to hearing loss; but her hearing screening only revealed fluid in her ears. She does communicate, though, and usually is quite good at getting her message across. I don’t know if any of you have read the article I wrote for c22c; but in it I mention that in some ways I feel chosen to have had this child, because I have had a lot of experience caring for disabled adults. It has been a help, even just that I understand a lot of the medical terms and situations we have been exposed to. Overall, this amazing child has been one of the most wonderful things to happen to RiK and I, along with our son. But, it has been a mixed blessing with a lot of forced growing pains involved.
That’s our story, so far. The support of our friends and families has played a large part in carrying us through (especially the first years,) and I have been occasionally overwhelmed by the amount of caring and generosity that people—many of them total strangers—have given us. However, no one has ever done anything like what you all have done for us. I am humbled by your gift. This is the sort of thing that renews faith in humanity—the kind of thing that makes me hope that the Threefold Law circles back around to each and every one of you and brings you all blessings of the magnitude as the one we have experienced this holiday. Thank you is not nearly enough, but it’s all I have.
Thank you.
Rayna Cordova
Mrs. RiK and mommy to Maddy and Corbin.
