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Family Matters Video
(Valerie) Hi, I'm Valerie and we have 3 children our youngest is Brianna and she has Cystic Fibrosis… (Jim) Hi, I'm Jim raising 3 kids are always a challenge but when you have a special circumstance like this it takes a family to come together to really be successful in fighting a disease like this and all of our kids have it's been special needs we've all met them and we have become a tighter family because of it and in lots of good things have come out of facing a challenge like this that some families don't have to face.
(Valerie) When we found out cystic fibrosis we knew nothing about what that what was that disease.
The prognosis was not very good at that time you know that was 15 years ago and you know for us that meant calling all of our friends and family and you know you get down on your knees and pray… (Jim) so it was pretty emotional… (Valerie) it was very emotional at that time and how do you tell a 3 year old, how do you tell her sister and her brother…
(Valerie) You know you can question yourself in just a normal family, without any disease.
(Valerie) This is a family disease that's all I can say. Our… our other children have been activity involved with this and we have a very supportive family.
I work full-time now. I didn't when she was younger. I was very, very lucky to be able to go with her for her hospital stays. And it wasn't easy you know sometimes I felt like I was the punching bag you know it's always the one that you love that take that that hard hit sometimes.
It was hard it was hard to divide your attention and to split it evenly for them… (Jim) We've talked about it all the kids and us talked at length multiple times at different stages of their life about the amount of time we spend with her working against and fighting this disease but when it comes to family things everything is equal you know we love all three kids equally and we try to treat them equally but there's special needs that have to be met with this, they understand that and they help us meet them so sometimes when we were juggling our time or our attention it wasn't easy you know if we are doing it the right way you can only go with your gut feeling and try to do the best you can cause there is no rule book and no manual for you to go read, you gotta write it as you go… (Valerie) It's not fair, life's not fair you gotta do what you gotta do and that time.
You know and I mean I've even asked them now as both of them are married and say you know I'm sorry you know and it's like they both both Kristen and Justin will say no mom you did what you needed to do and we understand … so I think we did the best we could and we'll continue on… if I had to do it again I would do it the same way.
I think that the biggest thing that has been a blessing though is to see what it is drawn out from our other two kids as far as becoming… adult like in their compassion and their care for a sibling; things they never had to do would of had to do they… they learn to do because of what Brianna was going through it really uh we stood back and watched them do things that just really made us proud that they were our kids so… (Valerie) Compassion I think is what was brought to our family… sigh… something you can't explain something you can't learn unless you lived it and our kids have lived it.
And it it just has opened their world to a different way of looking at life… a greater respect for life. (Valerie) It's hard as a parent when your child is sick you want to fix it and especially as a mom you know it's just you take it all on and you just want to fix it, make it me you know not on my child and when you have other kids there you… to divide yourself up between all 3 of you know my kids so you do what you can and I think we did the best we could… (Jim) Yup… I have no regrets (Valerie) Yeah.
Family Matters
When one person in the family has cystic fibrosis, the entire family has it. Not literally, of course, but that may be how it feels when treatment time and doctor appointments take over the schedule; when fear for the child with cystic fibrosis creates anxiety and depression in parents and siblings; or when the cost of medication eats through the family finances.
Discussing with your clinic social worker or psychologist the impact CF is having on your family life can act as a healthy pressure valve, releasing steam from a situation that, at times, is under great stress. Remember, you do not have to manage cystic fibrosis alone. Professionals, friends and family can all be called on to help. Many are just waiting for you to ask. The gift you give them in return is the chance to learn valuable lessons about the priceless nature of life.
