Parents of ADULTS with CF

[Katalinrogers]

You are really lucky living in the Bay Area. CFRI (CFRI.org) located in Mt. View has regular support group meetings. Coming up on the weekend of April 17th is the first "mothers' day retreat" in Menlo Park. Hopefully I will see you there, as I am coming up from Los Angeles. My daughter is 25, and has an MS in creative writing (that's right not MA) from the University of Edinburgh. She is living with us again. Check out CFRI, they have so much to offer!

 

[Carol H]

As I read this forum I cannot help but think of my Grandson.. He is only 6 yrs old but I do worry already what his life will be like and how my daughter and her husband will deal with it. it is so hard at times for me.. because I know as a Mom I feel for my daughter and my grandson. My daughter and I are very close and we have had long talks about him and what his future may be like and she was upset because she said he may never have kids and she wants to be a Grandma I believe the best thing we can do it let our kids know we are here for them but like many of you said Cant help but worry that is ok just shows who much you love them!!

 

[Aboveallislove]

Carol,
Tears in eyes as I'm reading because that too is one of the things that has hurt me so much. DS is our only child and I too mourn that lose while still hoping he might be one of the few that has a vas deferens or that he will marry and have children through adoption. (IVF is contrary to our beliefs). So I know the pain she feels and wish there was something to say, but sending hugs.

 

[DebA]

My dear, sweet daughter is amazing!! As a wife and mom, she gives her all to love and care for her dear hubby and toddler. She also works hard to stay healthy, but has had a lot of set-backs over the last couple of years.

What drives me crazy as a mom of an adult CF'er, is I can't call up her pediatrician any more for guidance. Her CF team (Dr.Ewig & St.Pete, FL CF team) was absolutely wonderful!!! I considered them as a big part of our extended family (sent them grad & wedding invites/birth announcements). They really cared for her and wanted to know even if her cough increased. However, my daughter now lives in another state and has a CF team that seems ok. Sometimes however, I wonder if they're proactive in their care, and I would often like a second opinion (care options). I've always been the researcher and handled things when my daughter was too sick and needed rest. Now, it just breaks my heart that I can't be there for her (and her dear husband). I can't give her doc a call with a question (or be "mother bear" if necessary), when she's too exhausted to call or even remember what the question was.

 

[believingjesus]

DebA - I totally relate to what you said. I used to call his clinic for every little worry and they were so good to me but he is older and needs to be able to handle all of it on his own and he does but I still have a hard time letting go when I helped take care of him for so long. My children definitely hold my heart. It is hard when I can only talk to him on the phone and hard for me to tell how he is doing health-wise by a phone call. That's where all my prayers for him and my other son and those I love come in handy.