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Grandparent Support
- Thread starter Grandpa
- Start date
My parents was with us from day one. You have to put everything in Gods hand, he will take care of you. Parents are the greatest support, my parents never let me have any doubt what the great man can do. I have two great daughters 17 & 18 w/CF. As long as I knew my parents and God was with us , My parents is my backbone, just stay strong and beat this...I know we will beat this disease. Just keep the faith, the meds and the cure will come in my kids and your grandkids time.
Deb
Deb
thefrogprincess
New member
I'm so glad to see that you want to be there for them. It will be hard since you are so far away but one thing you can do is to learn as much as you can about CF for a couple of reasons. One: You may learn something that the parents haven't heard of that could benefit your grandson, there is so much info out there that no one can know it all. Two: When they are talking to you about this or that treatment or medication you will know what they are talking about, this will save them a lot of frustration if they don't have to explain everything. Also if you are ever in a position to help take care of him you will know what you are doing and everyone will be comfortable with it.
Also look into Great Strides. It is the CF FOundations biggest fundraiser. Go to www.cff.org to learn more and to find one in your area. Walk in your grandson's name. This is a great way to be proactive even if you live far away.
Also look into Great Strides. It is the CF FOundations biggest fundraiser. Go to www.cff.org to learn more and to find one in your area. Walk in your grandson's name. This is a great way to be proactive even if you live far away.
I agree that educating yourself on CF so that they have someone the understands what they are going through is a big plus. Understand that there is a grieving period after the diagnosis and so much goes through their minds as it will yours too. They will need some positive strength to turn to. There is just so much to learn and it is life changing. When you talk with them though, don't make that the only topic of conversation. Give it the attention it needs, but my family tends to dwell on it. I think about it all day, every day and it is nice to have other things to talk about.
Are there any siblings of the CF child? If so, consider that child will certainly need some extra attention too.
I think you are taking the right step by coming here. Best wishes.
Are there any siblings of the CF child? If so, consider that child will certainly need some extra attention too.
I think you are taking the right step by coming here. Best wishes.
I think it is wonderful that you want to be there for your Grandchild. I am 43 w/cf and my Grandparents were not around when I was diagnosed. The biggest thing I can say is be there for your family (you aleady are!) and be prepared to listen when they just need to talk or vent. I think the job of being a parent of a cf patient is much harder than being the patient. I tell my Mom every single day (and my Dad while he was still alive) that I love them and THANK them for all they did for me. I was always treated as a "normal" kid - run and play with all the other kids, etc. It really helped me.
Having parents like you that love them and support them will be the best thing that you can do. Learn about CF - try to help raise awareness for a cure and that is the best thing you can do.
Having parents like you that love them and support them will be the best thing that you can do. Learn about CF - try to help raise awareness for a cure and that is the best thing you can do.
I could not have dealt with my son's diagnosis if it wasn't for my parents. My husband was completly unsupportive and has never even been to the CF clinic since my son was diagnosed over three years ago. However, my parents have been there from day one. i called the pediatrician to get my son's sweat test results and I was told to go ahead and come to Dr. office to talk, I immediatly knew it was positive. My parents dropped everything, they both left work, and came with me to get the dreaded news. My husband didn't even show up (I'm still a little bitter!) The emotional support given to me by my parents literally saved my life. You don't have to physically be there to provide support--the phone is invaluable! there will be times when the parents want to talk and times when the mere mention of CF will be unbearable. Don't make CF the only focus of conversation, enjoy the milestones he achieves as any other one-year old does.
Visit when you can and when you do, learn how to give his medicine and treatments and let your grandson's parents (is this you daughter or son) have a day off. I love when my parents offer to take over for a day or two!!
I think it's awesome that you have already taken the initiative to educate yourself and to visit this site.
Visit when you can and when you do, learn how to give his medicine and treatments and let your grandson's parents (is this you daughter or son) have a day off. I love when my parents offer to take over for a day or two!!
I think it's awesome that you have already taken the initiative to educate yourself and to visit this site.
Grandpa, I think that the Frog Princess and Shelly said it all. Educate yourself on CF, look into Great Strides, and don't <b>only</b> talk about CF. Obviously ask how he is doing. My parents were in Texas and us in North Carolina when my oldest was diagnosed. My youngest was born a week later and my mom was there so it was a huge help. Even though she was only there for about 10 days and Rachel too was diagnosed with CF it was wonderful to have her there with us. When we needed to focus on Anna she did what grandparents do, took over the baby. We were lucky in that neither of the girls were sick it was tons of instructions to absorb and initial tests and such they wanted to do.
No one in our family had ever heard of CF so there was alot of learning. When we visited they learned how to do PT so that I could have a break. (I say I because my husband was deployed the 7 weeks after we found out.) They helped when they were around. Visit when you can and encourage them to do the same.
You already are being a wonderful grandpa just by doing what you are doing.
Liza
(mom of 2teen girls w/CF)
No one in our family had ever heard of CF so there was alot of learning. When we visited they learned how to do PT so that I could have a break. (I say I because my husband was deployed the 7 weeks after we found out.) They helped when they were around. Visit when you can and encourage them to do the same.
You already are being a wonderful grandpa just by doing what you are doing.
Liza
(mom of 2teen girls w/CF)
Symptoms of CF...
loose, (frequent), smelly stools
salty tasting skin
frequent respiratory problems
trouble gaining weight (which I guess goes along with the first symptom mentioned)
Can't think of anything else at this time.
If by chance the test comes out positive and if there have been issues w/ your child, at least now you'll have an answer as to why there have been issues and you'll be able to seek treatment for those issues.
There have been so many advances in the treatment of CF that hopefully a cure or an easier way of life is in your child's future IF he even tests positive.
Please keep us posted on how the test comes out. I'll say a prayer for a good outcome
<img src="i/expressions/rose.gif" border="0">
loose, (frequent), smelly stools
salty tasting skin
frequent respiratory problems
trouble gaining weight (which I guess goes along with the first symptom mentioned)
Can't think of anything else at this time.
If by chance the test comes out positive and if there have been issues w/ your child, at least now you'll have an answer as to why there have been issues and you'll be able to seek treatment for those issues.
There have been so many advances in the treatment of CF that hopefully a cure or an easier way of life is in your child's future IF he even tests positive.
Please keep us posted on how the test comes out. I'll say a prayer for a good outcome
<img src="i/expressions/rose.gif" border="0">
I am a grandma of Shelby who is 4 and a half years old.
I help when I can and alway have. I spend the odd night in the hospital when she has IV's. I do physio when ever I can. Here in the UK we do not have the vest so its always hand physio when they are
young.
I know as much and sometimes more about CF than Shelby's mother does some of which I keep to myself so I don't scare her. Some of which I tell her if I think it will help. She in turn does not always
tell me what Shelby has cultured until the Dr's have decided what treatment to use.
We help and protect one another - we always do our worrying and crying alone or with another not each other.
See Grandparents are invaluable when it comes to support. Shelby is one of the most enjoyable and loving child I have ever met and I would never ever wish to not be there for her hugs and kisses.
Love Grandma Maggs
I help when I can and alway have. I spend the odd night in the hospital when she has IV's. I do physio when ever I can. Here in the UK we do not have the vest so its always hand physio when they are
young.
I know as much and sometimes more about CF than Shelby's mother does some of which I keep to myself so I don't scare her. Some of which I tell her if I think it will help. She in turn does not always
tell me what Shelby has cultured until the Dr's have decided what treatment to use.
We help and protect one another - we always do our worrying and crying alone or with another not each other.
See Grandparents are invaluable when it comes to support. Shelby is one of the most enjoyable and loving child I have ever met and I would never ever wish to not be there for her hugs and kisses.
Love Grandma Maggs