Kids with CF talking to other Kids with CF

[Carol H]

HI... My name is Carol and I am trying to see if there is a way for my grandson to talk to other kids with CF? His name is Connor he is 6 years old and very smart
He has had a rough year due to CF infections, pic lines and last Oct a really bad reaction to antibiotics he was taking. He was in the hospital for almost the whole month of Oct. he had a very difficult time. So now he scared, does not want to go see the doctors at all. I cannot blame him he really did have a difficult time. Also he is at the age and his development where he is asking a lot of questions about CF.
He said he is the only one with CF .. no one else in his school has it.. no one in the family has it and he wishes he did not have CF.
Of course as a Grandma this broke my heart (U) his parents and I try to make him understand. We have watched many videos on CF and have books
for him and also talk to his team at his CF clinic they are all awesome. But Connor still is having a hard time with this.. I really believe he just realized he is different
I believe if I can find a way to start a blog or pen pal or email any way for kids with CF to talk to each other it would help! I know if Connor could talk with a kid his age or say the ages of 6-10 years old it would help. I think he might only talk or type about Batman but he would know there is another kid out there like him? I want to help out my daughter and her family and of course my Sunshine Connor!! Let me know what you all think and any ideas how to let him find a
child a friend with CF

 

[jshet]

So sorry for what your sweet grandson is going through. So hard to feel like noone else is like you. I love your idea for ways for the kids to talk and become friends. They are the only ones who know what each of them are going through.
the support they can get from each other they cannot get anywhere else.
my son has autism, and really has no concept of his disease, but if i can help in anyway if you decide to give an idea a try, send me a pm, i would be more than happy to help.
jshet

 

[welshwitch]

I'm sorry. When I was his age I was allowed to play with other kids with CF. It made me feel less alone. Then the cross infection risk was discovered and I never saw those kids again. It's still tough for me to be so isolated at age 35. Wish this disease wasn't so isolating and I could go to CF support groups, etc.

 

[ethan508]

My brothers were a big support to me but I didn't realize it at the time. I also had a friend in middle school who had diabetes and we were able to be 'defective' together without the risk of cross infection. Seeing my friend monitor his blood and take insulin helped me see that I wasn't the only one dealing with medial issues.

Sometimes as a kid it was just nice to see teen/adults with CF that are able to make a good life for themselves. My mom's cousin w/CF served this role for me, and I try to serve it for my cousin's kid w/CF (with an arm's length approach for infection concerns). You might also consider finding some positive stories online about people with CF that have done/are doing great thing with there lives.

CF can make you feel lonely. You are doing very good things for you grandson in giving your support and looking for others to support him.

 

[zaj1139]

Hi my name is Carol Lynn (CL) and my grandon is 7 years old - as with your grandon, Jaden is very smart for his age too and I bet he would like a pen pal. His mother, him and his 5 yr old brother live with me so if your grandson would like to email he could send a Hi to wade.barrentine@gmail.com and place : For Jaden in the subject line. Then we can help him with a reply - sounds like fun!

 

[tlc]

Hi, my name is Tina and I have a 6 yr old son with CF. I would love for him to have someone his own age, with CF, to talk with. Caleb too loves Batman! He also is asking a lot of questions about CF and is also way too smart for his age, as most children are today. Private message me and I can give you our email and phone number. I'm excited for him to have someone to relate with (L)(L)


Mom of 6 yr old son with CF, DDF508

 

[TreasureGoddess]

It's hard to be so isolated with this disease. For a while, my son and another little girl would email back and forth (through their parents' emails since they were about 7 or 8 yrs). It seemed to help. Mostly would be things like what Pokemon character they liked and other big things in the lives of young kids. Very little was said back and forth about the disease itself, but it did seem to help to say "oh I went to clinic today" or "I'm heading into the hospital for a tune-up". They wouldn't get into details, but just knowing there was another kid dealing with these things did help.

Now that my son's almost 16 he's not wanting to talk to others with the disease too much, but when he's concerned about something he will ask me to "talk to those forum people with CF mom and ask them...." He wants to distance himself a bit now and I'm just letting him call the shots.

You are a good grandma! We are blessed that my folks have been very much a part of my son's disease treatment as well as plain old grandparent-stuff (spoiling, taking to movies, etc). I can't tell you as a mom how much that has made our lives easier and better to have them to bounce ideas off of and to just be there.

 

[Aboveallislove]

Dear Carol,
I can only imagine how much that tore your heartstrings. My son (who'll be 6 in June) had a few of those "I wish I didn't have CF" screams earlier this week. I wanted to share a couple other ideas, too.
If you/your daughter haven't read, I'd strongly recommend Lisa Greene's Love & Logic: Parenting Children with Chronic Health Condition's book. She's the mom of 2 with CF and discusses many of these scenerios. Having read that (many times to prepare myself), I was much better at handling his inevitable "I wish I didn't have CF," with empathy, listening, asking questions, etc., as oppose to just trying to squelch the emotion because I wish he didn't have CF too and don't want him to think that!

Second, one thing I've notice that helps is to talk to DS about other kids with it naturally. There are a few moms I've especially felt a bond with and talk to regularly and one has a son about our son's age. So I might say when he asks, "Oh, I was talking to Susan, she has a little boy Felix whose 7 and he has CF too." That one comment led him to ask more about Felix and say things like "does Felix do his vest too? Does Felix watch 'The Hive' when he does his vest." I'll say "hmmmm, I'll have to email Susan and ask." So maybe if your daughter has other moms who she chats with (real or virtually), that might be another way for him to connect. (Our son has pretty severe speech delays so he couldn't be understandable to another little one on the phone or Skype, but if your daughter PMs me, I can be the intermediary of "I 'met' another mom the other day and she has a little boy with CF too."

 

[Carol H]

Thank you all so much! I was in tears reading everyone's response to my request for help for my grandson Connor! It means so much to me that everyone understood and agrees and I have a few contacts now.. Connor will be so excited! I wanted to share my email address with everyone and if you want to you can email me direct or send a email to Connor and I can share with him! My email address is chartley057@gmail.com and Connor and I will email you or your kiddos if you want!
He is such a awesome kid! Today I picked him up from school and I always ask what was the best part of your day.. He stopped me before I could ask and said I know what you are going to say Grandma.. the best part of the day was recess and...Oh you picking me up today! Yep he knows how to work it!
I talked to my daughter and told her about this forum and what I am requesting she was thrilled and agreed a great idea to reach out! She has read Lisa Greene's book and the CF doc gave her a couple other books that may help. Again thank you all SO much! These kids are amazing and so are their parents!!

BTW Connor was diagnosed with CF at 2 weeks old, he has DDF08

 

[Carol H]

Hi all .. I just wanted to add a note to my request for a pen pal or email pen pal for my Grandson. I told Connor and his parents about my post and the response we got!
I had to explain to him what a pen pal is He is very excited and was surprised that there are other kids his age with CF.
I want everyone one to know just to be extra safe.. The pen pal email will only go first to Mom or Grandma and my daughter and I will screen everyone to be sure it is
appropriate for Connor. I would want everyone we have contact with to do the same! We are all about protecting our kids!!
We want this to be fun for the kids and to keep as light as possible.. also each kid can be at a different level with CF and the last thing we would want to do is add any additional fears. I think having a Pen Pal for my Grandson will really help him so he knows.. He is not the only kid with CF Thank you all!!!

 

[welshwitch]

Yay that is great news! As he gets older he may also want to connect with older adults who also have CF…I know that as a child that was really important to me, seeing that people could be "old" with CF despite scary numbers and statistics….now that I'm an old lady myself lol

 

[Carol H]

Thanks!! I really just want my grandson to feel as awesome as I know he is!! We have one video that we watch it is a older kid with CF.. it is really for older kids/teens and adults but my grandson really loves it because the kid in the video is having so much fun and he plays Hockey!! One of my grandsons favorite thing to play.. ice hockey!
Have you seen the video the band is One Republic the song I lived!

 

[zaj1139]

Hi, Jaden wrote to Connor yesterday and is excited that he may write back. He was so cute about it!

 

[Gammaw]

I am so tickled to see this thread. I have long believed we need a spot for kids to safely communicate with one ajother. They need to know they are not alone. I used to explain this to my DS and even show him videos of other kids vesting which helped. But being able to reach out and communicate is another whole level. It makesnitnreal. I remember how impressed he was to see someone in the clinic waiting room wearing a vest. He uses one at least twice a day everyday, but he just stared and stared at her and then got so excited to see someone else "for real". He asked me if she had CF too and I told him it was CF day at the clinic and I was pretty sure she did. It was real to him. I hope emailing helps everyone here. If you have a 10 year old with CF who might like to communicate, just private message me and I would love to give it a try!
As a precautionary measure for everyone, since the forum is open to anyone to read, even nonmembers, I suggest you communicate your email addresses by private message.
Blessings.

 

[Carol H]

Hi.. I want to share a story my grandson wrote for school they are working on short stories. This was so cute and really touched my heart!

When I was in the hospital I was scared. That I had to get shots and get a IV and get hooked up to flooids (fluids) and stay for a year and 320 day
I had sticis (stiches from skin biopsy) the next day I got a pic line so I don't get labs I get labs from my pic line.
Finally I went home. and played vido games (video) for a half hour. (because that is Mom's time limit)

He is in the first grade and his teacher is great! I think she has learned a lot this year about CF, I asked my grandson why he thought he had to stay for a year.. he said " Well in fact, it was a long time and it felt like a year, He was in the hospital for almost a month so I am sure it felt like a year to him

 

[Aboveallislove]

Oh Carol, how precious. And how wonderful he can talk about it. He must feel pretty brave and I bet that felt like a year to his folks and you too!!

 

[Imogene]

Oh this reminds me of many years ago...we had a group of dads who would use our CHAT with the little ones sitting on their laps!
We do have Zoom.us availability if we want to schedule a time to speak with some parents and children.
This is no problem
Let me think about how this could work...and feel free to PM me.
Salt and Light,
Jeanne

 

[zaj1139]

Hi Carol, I wanted to tell you that Jaden is over the moon about having a pen pal every day he comes home and the first words out of his mouth is Can I check to see if Connor wrote me? He is pretty much writing all of it himself with the help once in a while with spelling but he is so deliberate in making a good conversation. This will not only help them with having another friend its good school practice. He even told his friends at school that he has a pen pal. If any other little ones would like to write to Jaden please use Wade.Barrentine@gmail.com and put for JADEN in the subject line. His mother and/or I sit with him while he is writing. Although sometimes he presses SEND to fast and forgets to put : From Jaden LOL. Thanks so much again!

 

[Carol H]

I want to wish everyone a Happy Easter or Bunny Day depending on your faith. I feel very blessed today! My grandson Connor is doing good he is more than thrilled to have Pen Pals and he realized there are other kids with CF. He says that he loves having new friends and they all have a lot in common!
I want to let you all know how brave you are as parents and of course all of you.. kids and adults with CF! I tell my grandson all the time he is brave.. last time he had labs he was very very upset.. but he got through it. I was walking out with him I told him you know you are the bravest person I know! he said no that Nathaniel his cousin is because he is older .. I said no Nathaniel is very brave but I told Connor you are the bravest you do not want to have labs drawn but we do it anyway... that makes you brave!
He said Thank you Grandma.. but I cried, that is not brave I told him that it is ok to cry and get upset but you still did it!! He was all proud! he said you are correct!

 

[Aboveallislove]

Carol, thanks so much for sharing that last story. I will definitely be using Connor as an example of bravery for DS's next blood draw! It helps so much for them to have someone to look up to!!!