Tuesday, April 24, 2012

Hello old friend

Oh my poor blog, my neglected sixth child, my inner voice that I have had to shush the last few weeks, good to see you again!

I am thankfully looking ahead to a quieter couple of months, classes are ending at PT gig soon, FT gig slowed a bit and I will get a few glorious weeks of no PT school while the biggies still have school, I cannot wait to scrub the house!

I have been struggling with some things and they are causing me anxiety and stress that rears it's ugly head at 3 am where I sit in bed and stress only to fall asleep at 6 am just in time for the babies to wake.  Some of the stress is good-we are getting an awesome refinance, and some not so good-like what to do about Finn, the research study he is enrolled in and where to find a shoulder to cry on when it is just too much to bear.  Sometimes I log on Facebook and I am bombarded by all the positive and uplifting posts, videos, memes, tags, etc for a bunch of ailments that impact children and adults.  I love that they are out there, that people who are finding their way through some really tough and terrible times are seeing those same posts and that it lifts their spirits.  I know many people who are impacted by some of the illnesses and conditions highlighted, and I am so happy for them that they have that support, that others recognize the need to support those on that path and that there is a community.

At the same time, I wish there was a community for us.  I wish there was a video that spoke to the parents of kids with the odd disorder, the unusual, the undiagnosed.  That we could feel that same sense of community and understanding and support as well.  It can be hard, and on a really rough day it can bring me to tears because this path we are on has no one else on it.  No one.  We know of 50 cases like Finn's worldwide and each case seems very different. One will say that the condition is mild and benign, and the next will discuss scary things like childhood emphysema and aneurysm.  There is no "norm" and no community and no one who has gone before and can tell me what to expect.  I look at my boy and he is smart and funny and physically strong...but what about the inside?  Are his organs strong?  His veins?  How will his skin hold up?  What will we do about his breathing issues, his heart, etc?  I feel the love that comes from those posts, I feel what they must mean to a parent just finding their way and yet, I also feel lost and sad and very alone in this. Maybe we will find out more through the study, maybe we will help them get more information so another mama never feels so alone.  I know for sure that until the day I die, if a parent contacted me and wanted to know our experience, I would be there to share, to help, and to provide whatever I could in the way of comfort, because I so wish I had that right now.


Casey said...

I think you should start a support group for parents. If you are looking for something, then it stands to reason there are at least 49 other parents looking, too.

Start a page on FB and see what happens. I think it would be a great thing for you to do!

Christine Deppen said...

I completely agree with Casey. If there is no path, make your own. I can't relate to Finn's disorder, but I can relate to my own. Back when I was diagnosed with diabetes in 1985, there was no community support. Over the years, a woman, near my age, started her own blog about her diabetes. Her name is Kerri Sparling and her website is www.sixuntilme.com. Her blog now has THOUSANDS of followers and she has made a career of it. While type I diabetes is FAR more common that what Finn has, I'm sure that you could garner much support from those out there who also have it. You have an amazing support system of people who care about you and your children. Maybe reaching out to the world via the world wide web will help you receive more advice and support from people who truly understand what you are going through. Hugs and prayers to you. I know this must not be easy.