When I was newly engaged and married and we were dreaming of a life with kids I thought I would make one heck of a PTA Mom.
I thought I’d be able to spend hours helping the school out with everything from the classroom to the media center (Library for those who haven’t been corrected by a teacher in this or the last decade). I’d work a little bit from home freelancing and spend time at the school, and I’d be available for the kids after school.
It didn’t quite work out that way.
I’ve had to pick and choose my volunteer efforts.
Instead of helping at every event at Gage and Quinn schools like I thought I would, I am working with the PKD Foundation to help make advances in research and public awareness. It’s not realistic to think that I’d be able to care for the special needs of Gage and Quinn AND do everything I want to at their schools AND work AND do the regular things that make us feel like a normal (whatever that is) family AND help the PKD Foundation.
I’ve come to terms with only being able to spread myself so thin. So…I’ll have to let the other parents who had the same dreams of being PTA parents take care of the things I had hoped to.
It’s sad to let go of some dreams and take hold of others when one is forced to. But one day you have to wake up and realize that it is what it is. It’s best to grab on to the new dream and go with it – wherever it leads you.
So in a few weeks I’m headed out to spend almost a week at the annual PKD Conference (my 4th). I’ll spend a couple of days in Chapter Coordinator Training. Then I’ll attend sessions about the disease – everything from dialysis and transplants to the emotional effects and nutrition (hours of discussions of our future X 2). I’ll also attend a special session for Chapter Advisors (I’ve been newly elected to the group). We’ll get to be among other families faced with the same challenges we are and it will be the highlight of the conference – to feel normal in a group of about 20 families or so. And just to keep things interesting in my life I’ll speak at one of the sessions – “Living with PKD” – since I don’t really consider myself a public speaker – that should be fun.
No. I wouldn’t say I dreamt about a week like that when my beloved and I discussed raising a family together. But I should make sure, during that week especially – I’m mindful of the fact that PKD has brought many amazing things into my life. Trust me, it’s easy to forget sitting in those sessions.
Maybe on my name tag that identifies me as an ARPKD parent, a PKD Foundation volunteer & CAC member, and a speaker I should add: “Slap me if I forget about the amazing things that are in my life because of ARPKD.” Yep. That should do it.
Julia, your nametag should read “One incredible woman and mother.”
Much love,
Jody #1
I know how you feel. I was brought up in a “normal” healthy home and never envisioned the life that I was going to lead with my children. I thought life was difficult when I had the first three of which one was a chronic asthmatic from birth and one was born with meningitis. The fourth had reflux as an infant and would often turn blue, the fifth was a chronic asthmatic and the last one was diagnosed with PDD-NOS. I have seven and although the first six are healthy now: the PTO, the fashion shows and photo shoots, even the cheerleading for the girls and sports for the boys, have all been put on the back burner. The 3 1/2 yr old’s PDD diagnosis and his disabilities have superceded all our dreams and the “normalcy” others enjoy. We now do things that he can participate in and that he enjoys. Believe it or not it brings us closer together as a family. One little helpless child that holds the hearts of soo many.
Thank you for sharing your thoughts and feelings and remember that you are not alone. Know that you are a blessing to others as well as to your children.
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