65 Roses

On Thursday of this past week, we found out that Hyrum, our precious little boy, has cystic fibrosis. They found it while doing the routine screening of newborns they always do, by studying the blood samples you give them at birth and at their two week appointment. They actually just started testing for cystic fibrosis (CF) in newborns in Utah in January, and we are very glad they did. I guess Utah was the last state to do that. Anyways, they found it in his blood and discovered one allele for CF, and since it's recessive, they weren't sure if he had it or not so we had to get a sweat test. Hyrum did the sweat test and didn't pass (which means he has too much salt in in his sweat), which confirmed his diagnosis for CF.

Since I know that many of you will now look up CF online, here's a word of caution: the best place to look is the CF Foundation. Our doctor has told us that a lot of the things you will find elsewhere are history, because of all of the new research going on and many breakthroughs.

We have been told that he should have a normal childhood and be able to do all the things most kids do. He can go to regular school, have friends, and even do sports, which really surprised us to find out.There is even proof of it at the CF Clinic in Salt Lake, which is where we will be going pretty frequently now. At the clinic, they have a bulletin board filled with pictures of the kids they treat with CF. Probably half of them show the kids doing some sport of sport, activity, or beauty pageant. The board is titled "65 Roses," which is how they help the kids know how to say cystic fibrosis, since it's so hard to say. Hence, the name of the post.

Probably one of the biggest worries that came to our minds with CF, is that the average life expectancy is 35. However, we have been told by all of the many people who have talked to us about this (genetic counselor, CF doctor, our regular doctor), that they expect his life to be much, much longer than that. That statistic is from people who were not diagnosed right away and who haven't had the most advanced treatments their whole lives. In fact, our CF doctor told us that at the last CF Foundation conference, the medical director told them that he thinks that babies born with CF now will probably actually die from something else. Both the genetic counselor and the CF doctor think Hyrum may not even die early.That is the beauty of having caught CF early. They do a lot of preventative measures that will help improve his life and length of his life. Of course, that is no guarantee, but Ryan and I are very optimistic.

I already feel like I have learned so much from this, and it hasn't even been a week.Yes, I was devastated at first, because you never expect your life to go this way, and I really just wanted Hyrum to be able to have a normal life. But I know your prayers for us have been working, because I have been able to feel so much comfort from the Spirit. At first I found myself questioning God, wondering why He would let this happen to such a perfect little boy. And the first thing I have learned since Thursday, is that trusting the Lord and following him in a trial is a definite choice I had to make. There came a point for me where I could either plead for the comfort of the Spirit and be humble or turn away from Him and try to do this on my own because of my anger. I am grateful for the testimony I have been building up my whole life, because without it I wouldn't have known that turning to the Lord is always the best choice. And I would probably still be hurting very much.

Another thing I've learned came today. I was reading in the scriptures, in Proverbs, and I came to a verse about pride. It was cross-referenced to a verse in the Book of Mormon, which I read, and was reminded how pride can be thinking your will is better than God's will. I then realized how prideful it was for me to think that what I wanted for Hyrum was better than what Heavenly Father wanted for Hyrum. It has given me great comfort today to put my trust in the Lord's will, knowing He knows what is best.

Probably the best thing I've learned is dealing with the life expectancy. Thirty-five is an average. That means some people with CF have died before that, and others have lived longer. And as discussed above, that number is expected to go way up in the near future. So really we have no idea when it will be Hyrum's time. But then, how many of us really do know when our time will come, if it will be earlier or later? Not that I'm saying we should live our lives in fear, it just reminded me how every day we are alive is a blessing, if we have a disease or not. I will always try to remember that.

Part of the hard thing about this trial was knowing that this is no temporary thing, and this would be something Hyrum would have to deal with his whole life. But since then I have remembered, this is not a permanent disease. I know that once we are resurrected, Hyrum will have a perfect body, with no disease. And that gives me hope. Man, I love the Gospel!