Hello, My son was born on 1-7-03, very weak and sick. We knew that our son was sick while I was pregnant, but with what we had no idea. Then the day came and it seems that it has not stopped spinning since then. My husband is a fire fighter in the Airforce and is away right now fighting this battle in Iraq. Needless to say I am alone fighting this battle here at home. I live in Florida and was wondering if anyone knew of any live support groups that might be near. Really anything would help. My son has been fighting so hard already I am afraid of the future with no one to turn to for answers. Any advice would be very much appreciated.
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Please help me find support somewhere
- Thread starter Ashauna
- Start date
Hello, My son was born on 1-7-03, very weak and sick. We knew that our son was sick while I was pregnant, but with what we had no idea. Then the day came and it seems that it has not stopped spinning since then. My husband is a fire fighter in the Airforce and is away right now fighting this battle in Iraq. Needless to say I am alone fighting this battle here at home. I live in Florida and was wondering if anyone knew of any live support groups that might be near. Really anything would help. My son has been fighting so hard already I am afraid of the future with no one to turn to for answers. Any advice would be very much appreciated.
Hi,I'm from PA but if you go to http://groups.yahoo.com/group/cfparents someone can probably help you. this is an online support group but one of the BEST ladies on there is from FL. She is in the Orlando area but is knowlegeable about the state and extremely well versed in CF related stuff. Also ask at your baby's clinic. Sometimes the social worker knows of a parent that is willing to help others and be supportive though the tough times. I met a really great woman this way too! Don't be afraid to ask at clinic for help. they have a team there so they can help with dealing with all aspects of CF, not just medical for our kids but for us too! I remember how hard all this was in the begining, I can't imagine doing it by myself and dealing with the worry for my husband. You have every right to ask for help!Andrea
Hi,I'm from PA but if you go to http://groups.yahoo.com/group/cfparents someone can probably help you. this is an online support group but one of the BEST ladies on there is from FL. She is in the Orlando area but is knowlegeable about the state and extremely well versed in CF related stuff. Also ask at your baby's clinic. Sometimes the social worker knows of a parent that is willing to help others and be supportive though the tough times. I met a really great woman this way too! Don't be afraid to ask at clinic for help. they have a team there so they can help with dealing with all aspects of CF, not just medical for our kids but for us too! I remember how hard all this was in the begining, I can't imagine doing it by myself and dealing with the worry for my husband. You have every right to ask for help!Andrea
hello, I am a mother of a 17 year old son with cf. I wish your family all the best. MY son has come a long way,everyday there is something new.Never give up hope. Just always bethere for your baby.Treasure every moment you have with your baby.My son is always happy no mater what he loves life.So i am always there for george ray.He is my pride,he is the heart of our familey.I wish i could say it will be easy,but there will be days when you think you cant take anymore.When you feel this way,just look at your little child and thank GOD you get to share your life with such a special person.When i feel like i need to cry i get in my car and drive to the lake and cry.It helps so much.But i try not to ever cry in front of him,He is always smiling,and that makes everything we aregoing through and have been through wrouth it.So just love him and be there for him.And one mostimporent thing you should know there is nothing your child cant do.He can do and be anything he wonts tobe.My prayers and thoughts are with you. Laura Everett Mother Of A CF Child, George Ray Thomas D/O/B 06/07/86 George Ray loves life he is always smiling so i am happy.
my son was born 2 days after yours. And stayed at the nicu for 43 days... Now he is strong and very smart...but things are really dificult coz I don't have my family in the USA nor any friend...and I feel really lonely...I can imagine how u feel...I live in GA, but u can write to me if u want to. My e-mail is woosky_val@yahoo.comvalmum of torin (7 months)
Thank you Laura, I have been given so muc encouragment since I have been really looking into this disease. For a while it was too hard to talk about it with anyone now I am opening up my life to it and really want to be involved in anyway that I can. Funny how you go through the greiving period and then you just suck it up and realize that being sad is not going to get rid of this so I just have to keep on living and teach my son to live life to it's fullest.Thank you again,I hope your son is doing wellAshauna
Hi Ashauna. I just want to let you know that you are not alone. I too am a military wife. AF stationed in Nebraska. My now 16 yr. old daughter was diagnosed at 3 yrs. just one week before my second daughter was born. 6 weeks after her birth my husband was sent to Desert Shield/Storm. Both my girls have CF. You will find that alot of what helps you survive as a military spouse will help you get through this as well. I was lucky, my in-laws were only 2 hrs away. But I did not have to worry about a sick child when my husband left for that unknown period of time. Growing up military I had a feeling it wasn't going to be a short time. We lived in base housing, my sister was visiting, a week after my husband left I locked up my quarters, let my husbands NCOIC and the SP's know I was leaving and packed up my mini van and went home to Texas for 6 months. Before we left we had the support of my husbands co-workers (those that were still there) and when we returned they were were all still there willing to help. (My husband didn't return for yet another month). There is support and help out there for you. I don't know about a live support group concerning CF but certainly one that can help with coping. First of all, is your son in EFMP (exceptional family member), does your husbands squadron know your situation, the OIC or NCOIC? Is there a wives (spouses) group and do they know? How far away is your family, his family? And if you don't mind me asking, where are you stationed? Lots of people don't really care for the wives/spouses group but at most bases they can really be of help. Some bases they are still the OWC or EWC but many places have a smaller more intimate version for their squadron. We do at the hospital. My husband is an ENT PA. Even if you are not a member they still help you out. Also check out the Family Support Center. Let them know what is going on and that you need some help. That is what they are there for, to help, at least steer you in the right direction or find out for you where you can go. Ashauna, I hope I've been of some help. Please if you have any questions or just want to talk, just let me know. I have been where you are. We don't always have conrol, well I guess never have control, over when, where and how long our husbands will be gone but we do have each other to fall on. Liza
Hi Ashauna and other CF families: Please try to stay positive. My little girl is now 8 yrs old and was given a definite diagnosis of CF at 3 mos old. I knew something was wrong and the resident who saw her all the time said there is nothing too unusual. She weighed 4 lbs 9 oz at birth and kept losing. I knew a normal is for neonates to lose 10% and she far surpassed that. She had 10 stools per day and I finally took her to a local pediatrician (who had always seen my son) for diaper rash and he knew instantly. He sent us back to the center (Vanderbilt in Nashville) where we had been going for pediatric care to do the sweat test. She had a total of 3 sweat tests done over time and they were high counts. The best advice I can give, is it may take some time for your baby to get on track. Slowly, my little girl started to gain. She was late in walking and talking BUT now it is non-stop chatter and bursting with energy. She is a perfect angel and I had included Angel in her name. I feel sad that such a dream child has this problem. I had no one to talk to about it either and sometimes I didn't feel like talking. I keep my kids at home, no daycare, because as you know, no one will be as particular and as careful as you are with your babe. Also, I would rather spend as much time as I can with them. I home school them, so that also cuts down the risk of respiratory involvement. I feel priviledged to do this as a little girl in this same community has been hospitalized several times for the antibiotic therapy. She has 3 brothers in grade school. Anyway, I choose not to work to be able to do this. When I have had financial needs requiring me to work part-time, I would work the night shift so the kids stayed in our own home with their dad. I your baby on Pregestamil or other predigested formula? I have always given enzymes by dipping my finger in baby food(bananas) and the into the enzyme pellets. My baby immediately got used to that and I did it for years. Now I open the capsules and pour the pellets into bananas and give by spoon. So with time and your TLC your son will take off in weight gain. Oh yeah, my little girl had a lot of reflux as a baby and would choke. That was scary. I did everything I could : held her mor upright with bottlefeeding, kept her up longer after the bottle, gave smaller portions more ofte; everything to help it. But at 9 months old, she still weighed 11 lbs and the CF doctor said we needed surgery to tighten the sphincter muscle (GI Nissen). First, she had to be in hospital for a week to build her up because of transient anemia. When I found she was to have a transfusion, I insisted my blood be given. After the surgery and time , she started to gain. Your diligence will pay off. Please email me if I can be of help in anyway. Mary Young youngme@bellsouth.net
I am in Florida too! Where are you? E-mail me maisoui39@hotmail.com. My daughter is 20, was diagnosed at 2 mo. If we are geographically close maybe we could get together. My daughter is wonderful, is a Vet-tech, married and has a great life. CF is part of what made her who she is, but is NOT who she is. Your CF clinic should be able to refer you to some support groups, and they should have a counselor on board. But you can e-mail me and we will take it from there, K? Look forward to hearing from you!Marie
HiI married my wonderful wife on jan7. Our third daughter was born 1-25-01. She has CF. We nearly lost her in May of that year.She got very, very sick (CF related).I am very sorry you are dealing with this. If you are a Christian there is a CF site just for Christians dealing with CF. http://groups.yahoo.com/group/CF_4_Christians/?yguid=91936286I would allso recommend Cystic L ( dont have the address)This site is also very good. Hang in there and undertstand. Everything happens for a reason.Don P