Take me off the list please......

Believe me, I have my moments like so many others dealing with something difficult in their life.  In my case, it's raising a special needs child.  Shortly after Beau's diagnosis I was made aware of a ListServ, mass emailing group for parents, those diagnosed with and family members dealing with ACC.  I thought that it might be good to join to see what others were going through and maybe provide me with a glimpse of what the future might hold (that was also a crazy thought since all of these children are so different).  That was my thinking early on in Beau's diagnosis.  As with anything like a life changing diagnosis, a death, a trauma, etc. there are stages of grieving.  Everyone approaches those stages at different times and there is no set timetable that you are supposed to go through each stage.  I remember those early stages and I remember the other traumas that we were going through at that time that compounded the emotions; a miscarriage from a partial molar pregnancy, possible uterine cancer, bankruptcy, losing our house, etc.  Life was anything but fair that year and yes I realize some of it was our own fault but it still was rough.   

There have been many times here lately where I have wondered if there is something wrong with me.  I say that because I had been reading several of the posts on the ListServ (and not reading several others).  There are soooo many emails that go through the ListServ and if I see certain subject lines I would just delete them.  Let me preface what I'm about to say with this: I understand the process that we are all going through, I understand that some parents are dealing with a lot more problems than we deal with, with Beau, I understand the daily struggles of dealing with a special needs child, I understand that we have to make decisions that aren't fun, I understand that we know our way around specialty hospitals and know more doctors and specialists than we care to know, I understand we are scared about what the future holds, I understand it completely SUCKS some days.............BUT there comes a time where you need to move past the self pity and just deal with it.  I know that probably sounds heartless but I can say it because I'm on the inside; I'm not some outsider looking in. 

Last week I requested to be taken off the ListServ.  I couldn't hear/see any more of the negativity and pity parties, especially from folks that have children that were diagnosed 10 plus years ago.  I remind myself everyday that there are always others that have it worse - including us ACC parents.  Believe it or not, there are other families with bigger struggles. There are families that have children dying from cancer - I'd say we're lucky in that respect.  It's all about perspective and putting things into it.  We all have our days and I know that there will be more times along the path with Beau that I will cry at night for what he is going through and because we didn't get to raise a "typical" son, BUT I always have to come back to reality and know that I am better off today for God's wonderful gift of Beau.  And I realize that God entrusted me with Beau's care for a very special reason.  I decided early on that I couldn't change what was happening with Beau.  I took those tears and poor me attitude and transformed it into Beau's Beautiful Blessings, our non-profit that raises money for kids in the state of Iowa that have brain abnormalities, brain injuries and/or epilepsy.  I received a call yesterday from a dog trainer that is training a service dog for a little boy that has P-ACC, like Beau, and we are the organization paying for the dog.  Herky, the dog, is doing amazing with his training and should be "home" for Christmas with this wonderful little boy who really needs this dog.  WE, Beau's Beautiful Blessings and its friends and donors, made that possible by turning negativity and self pity into something so incredible.  It's about being proactive and giving back and being grateful for all that you DO have.

I've rambled on and made my controversial opinion known so I'll stop for today.  I have learned that it is OK to be happy and not be sad about your child's life changing diagnosis.  Please don't ge me wrong I still have my days where I get down and that is to be expected, I'm just saying I don't cry and complain every day because of the cards we have been dealt!  Go out, educate and create awareness for these kids! 

My happy boy Beau with daddy.