Merry Christmas Clare

Clare was born in February of 2001, a day we never forget, because on the day that she came into the world, JD’s brother died suddenly of a heart attack. Clare is our goddaughter, a gift from heaven, and as a small side note, she was born with cystic fibrosis. When Clare came into the world, we had no idea that she would be afflicted with this chronic disease. Her older siblings were all perfectly healthy however cystic fibrosis is an inherited condition that causes a mutation on chromosome number 7 and its protein product. If both parents carry the gene, the odds are greater that the child will inherit it, even though it’s a recessive gene. Genetics are the recipe of us, our phenotype is our characteristics or flavors that make us all unique. From our coloring to our size, our physical characteristics, genetic pre-dispositions; even our flat feet; these are all what makes us super special. If everyone was the same, well, life simply would be a little boring. Clare is one of the funniest little personalities I’ve ever met. I just adore her. She is bubbly, energetic and cute as button. This Christmas, her Auntie Tam wants to tell her truly special she is, so I am writing this open letter to her and sharing it with readers who might also know someone with CF.

Dear Clare:

You are growing up so fast. I hardly believe it every time I see you! Your smile is so infectious, it makes me smile too. I know you know a lot of things because you are a super smart little girl; but I had to tell you this Christmas how much you are loved by us all. I guess the lesson with living with CF is realizing that each day is important and life is a precious gift. Discipline is important too, because when you live with a chronic condition like CF, you have daily routines that involve taking medications that help keep the bad bugs away. Your mom and dad work so hard to make sure these things stay away, and as you grow up, you will see how important your daily routine is to your health.

I don’t want you to ever be too discouraged. I hope you have lots of strength and courage to see you through the bad days, plus I hope you always have laughter to make your good days even better. It’s important to stay happy Clare because it’s part of who you are and why you bring so much joy to others. I know how much joy you bring to your brothers and sisters and all who know you.

People are more than numbers and statistics Clare, so when someone tries to fit you into a box, I want you to tell them that God broke the mold when he made you. Each person has a trial to go through or little setbacks here and there; even the healthiest person has bad days too. When your bad days come, never forget that these things are passing and do not define who we truly are on the inside. All your sparkles inside you make up who you are. You are a special child created by God who has so much to give to those around you. I expect that like other people you will finish school, maybe have a family of your own someday or do something else that God has called you to, but the most important thing for you to hang onto and hold fast to, is your beautiful faith, because that is what will sustain you in every thing. I know you pray a lot and I hope you pray for me.

This Christmas I wish you joy Clare. Your life is a gift from the little Infant whose birthday we celebrate. One day when you are able to go out into the world on your own, I hope your share your joy and zest for life with others who might need a little light. You make me laugh. I love you. Merry Christmas Clare!

Tammy Maher is a resident of El Dorado Hills and biweekly columnist for the Mountain Democrat. You can reach by email at familyfare@sbcglobal.net or on the web at http://www.familyfare.blogspot.com/