Friend with Faith

Today we went to the zoo as a family. We met an old friend of mine and her family there. The O family is a Navy family. Mr. O is an engineering officer. Thankfully, for my friend, that means he rarely has to leave for extended duty. They have three children: Josh, age 7; Jackie, age 5; and Jake, age 2. Mr. and Mrs. O are fervent pro-life advocates. They are so pro-life that they do not use birth control. As she says it: They "are prepared to welcome as many children as the Lord deems appropriate" into their family. Wow, what a leap of faith.

Not only is their attitude about children a leap of faith, their daughter's health requires constant faith. At about 6 months old they started noticing bruises on their sweet baby girl. Jackie was not mobile yet and bruises seemed to appear very easily. Their first concern was leukemia. They were relieved to find they were spared a cancer diagnosis. However, the diagnosis was not a good one. She has acute hemophilia.

I knew very little about the disease before baby Jackie was found to have it. What I did know was that girls are not supposed to be symptomatic. The recessive defective gene is carried on the X chromosome. Boys are afflicted because there is only one X chromosome and, therefore, not an extra "good" copy of the gene. Girls have two X chromosomes so the other gene typically protects them from becoming symptomatic. They can be carriers, but are not usually afflicted. For some reason Jackie's extra copy of the gene that is supposed to protect her has turned itself off. She has been studied by the best doctors in the country and no one can explain her unique genetics.

What does all this mean for the O family? It means that every bump little Jackie receives could be life-threatening. She has had severe bleeds in her brain and hip. She is on medication, however it is not as effective as the doctors would expect. Thus, Mr. and Mrs. O have a couple of different ways to handle her condition. They could not allow her to do anything and make active little Jackie stir-crazy. That option would be very tempting. The other thing they could do is have faith. This is the option they have chosen. While they do take precautions with her (helmet, knee pads, etc.) they allow her to play like most kids. There are some activities that are off-limits. She will never be a gymnast. She will never be a rugby player. They are hoping she will be able to live a relatively normal life. She will always have significant medical bills. She will always need to be careful. I don't know what her diagnosis means for her ability to carry her own child someday. What I do know is that she is one in several million, literally.

I am thankful her parents are people of faith. Without faith this would be an impossible disorder to accept. While they would have never asked for this disease to afflict Jackie, they hope and pray God will use their situation for His glory. I am fortunate to call Mrs. O my oldest friend (we have known each other for 26 years - we are only 33). She has taught me so much about acceptance and faith. She is not angry with God or bitter about her more difficult situation. She is grateful to have Jackie in her life.