CF "Pen Pal"

[anonymous]

My name is Katrina and I am the mother of three children. My oldest son, Sean, just turned five and has Cystic Fibrosis. Sean was diagnosed just a few days before his second birthday. For the first two years after his diagnosis, Sean basically accepted all his medicines and enzymes as a "normal" part of his day. However, slowly over the past year, Sean is definitely starting to question his treatments. A few months ago, he actually asked his daddy "Why did God make (him) with CF." Now, he asks us at least once a week some question related to CF and/or his treatments. This morning he burst into tears as I was getting him into the car because he started coughing and told me that he "doesn't like CF." My heart just aches for him. So far we have managed to answer his questions and reassure him to the best of our abilities. However, we are just his parents. Although we know all too well what it is like to raise a son with Cystic Fibrosis, we will never truely know what it is like to have the disease ourselves. I think one of the best things for Sean would be to have a "CF friend." Since children with CF are not encouraged to socialize, I think he feels like he is "the only one" who has to do all the things that he does. Sean is just learning to read and does not know how to write, but I thought that maybe with my help, Sean could have an email "pen pal." I think it would really help him to have a friend he could "write" to and talk about anything that comes to his mind, sports, super heroes, swim lessons, CF, etc. If anyone is interested is also helping their child "write" to my son, I know he would love it. Our email address is robertnkatrina@attbi.com.Thank you,Katrina - mother of Sean (5) w/cf, Carolyn (3.5) w/o cf and Allison (1.5) w/o cf

 

[Dea]

Hi Katrina,I am a 29 yr old mom with CF. I have a 5 yr old daughter myself. It sounds like you are doing a wonderful job with reassuring Sean about CF. He is still so young, but has many years ahead of him. Think positively about the future....you have to. My lung problems and digestive problems are about the same, but everyday am thankful that I am alive! Because I have this disease myself and think about young children with it, my heart also aches. I am so thankful that my daughter tested negative for it. But a little reassurance for you....they have come such a long way since the discovery of the CF gene. I believe that your son will see a cure in his lifetime! I am even hopeful that I can live long enough to see it in mine! Take care!Dea

 

[anonymous]

Although I am 20 and have cf I wouldn't mind being a pen pal. I love kids and would love to help out. I can carry on a good 5 year old conversation. We can talk about anything that comes to his mind like you said. IF you don't mind him talking to someone older. I know you prefer someone his age. But if you can't find someone his age I am here or even if you need to talk. You can also try these two communties, I know for a fact they have parents on there that would love this idea. http://groups.msn.com/CysticFibrosis2chat/homepageor http://groups.msn.com/TeamRachelJaneThe first one I started back in November and it has over 400 mebmers and plenty of parents to talk to or get their kids to be pen pals. The second was started by a parent its pretty new and growing too. She has a daughter with cf about your sons age.Hope this helpsAmanda

 

[anonymous]

Amanda-Thank you for your reply and kind offer. Sean would love "talking" to you and I think you would be very helpful to him - after all, you were once five I don't know if you would prefer writing the old fashioned way or emailing him or a combination of the two. Our email address is robertnkatrina@attbi.com. If you prefer "real mail," please just email me first and I will give you our address. Just a little bit about Sean. He just turned five (5/7/98), he was born in Chicago, IL and moved to Dayton, OH when he was just a year. He was diagnosed with CF just a few days before his second birthday. He has only been hospitalized once last year for ten days. Four days after he got out of the hospital, we moved back to our native state - California. We now live in the Bay Area. He loves super heroes, bugs, riding bikes, drawing, singing, and playing soccer. This summer he is learning to swim and to read and is really looking forward to starting Kindergarten this fall. Hopefully, some of this information helps you relate to him a little. I know he will look forward to "meeting" you and hearing all about you.Thank you again. I look forward to talking to you, as well.--KatrinaDea-I wanted to thank you for your kind words. I too believe that a cure for CF is within our reach. I hope it comes within ALL of your lifetimes. I am happy to hear that you are a mother and (hopefully) enjoying good health. Thank you again, Katrina

 

[Drea]

Hi Katrina,My daughter is 4 &1/2 and and has told me that she "hates CF, PT and Nebs" And that she doesn't want "special lungs" anymore. She would love to write to your son. She loves to sing and dance,draw and play in the water (she wants swimming lessons too!) I'm the mom with the site Amanda mentioned-feel free to check it out it may help you to know what Rachel is like so if they write eachother they will have an idea about one another.AndreaMom of Rachel 4&1/2 with CFHttp://groups.msn.com/teamRachelJane

 

[anonymous]

Hi Katrina. I am a 25 year old with CF. I grew up in Lousisana and moved to Mississippi to attend college. When I was growing up during the summer I attended Louisiana Pulmonary Disease Camp Inc. Any child that had a pulmonary disease (severe asthma, CF, etc.) could attend. Parents were able to send their children off to a week long camp that was fully equipped with nurses and doctors and FUN!!!! The camp was free and provided parents a week off and childern a place to meet other kids just like them. It wasn't just kids who were doing well. There were kids who attended while on IV meds, kids that were wheelchair/respirator bound, oxygen dependant, etc. Everyone had fun and it was wonderful to feel that you were normal. I made a lot of friends and it was really nice to sit down in a large cafeteria and not be the only one at the table popping pills! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We stayed in large cabins with bunk beds. All counselors are trained on how to give meds, CPT, and nebs. We had arts and crafts, swiming, sports, dances, talent show, a carnival, and at the end of the week an awards ceremony where awards were given for all types of things. You might want to check with your CF chapter to see if something like this is available in your area. The camp in LA is still running. It takes place at the Louisiana Lions Club Camp in Leesville. Again there is no cost. There are so many kids from the New Orleans/Baton Rouge area there is a charter bus that picks you up and takes you. Parents can also bring their kids as well.As for me now....I am happily married. Eventhough everyone's CF case is different, I have been lucky. I lead a fairly normal life. I played varsity sports in high school and moved to another state to attend college. We've come a long way since I was first diagnosed when I was 7. There is hope that we will be seeing a cure in the future. Always remind your son "Never under estimate the impossible". If you have any questions you can contact me at chambers_leanna@yahoo.com-LeAnna 25 w/cf