heart wrenching

The heart break just begins at diagnosis. I, of all places, received the call with my daughter's diagnosis of PKS while I was shopping for spring clothes in Wal-Mart, a day I had taken to spend time with my other kiddos. I was a blubbering mess and while I should have just put everything down, I instead proceeded to check out thinking I could keep myself together for 10 minutes....but no, I lost it on the check out lady...she thankfully didn't think of me as crazy (even tho I told her I was 😞) but gave me a much needed hug instead. Seems like looking back on it, it would have been a better conversation for the doc and family to have in person, but oh well.


What I've not expected is the hardships that came once Savannah was home. I have spent countless hours in the social security office, dept of community based service office, health dept, etc...trying to get help for her. We have also looked into waiver programs only to be told she will be put on a waiting list of 900 plus kids. When she was initially at home, we had a lot of help from govt...but through recent surveys we have been told that our income is too great for anymore assistance. So, here's to our fantastic government and the next (at least) 2 surgeries that will be paid for somewhat by employer insurance and the rest out of pocket...not to mention the countless doctor visits, medical equipment, prescriptions, therapy and the list goes on.


I'm not writing this for pity...just to give an insight to the not so pretty aspects of life with a special needs child. And to vent before I explode. Is it not enough that she's disabled...that's heartache enough for us...but all the other should be unnecessary struggles that this govt places on us makes it even harder. I'm convinced that one day this will get easier...God will take care of us as He is already. We are a blessed family...blessed with our family and friends who love Savannah as their own and for that I'm thankful.


 Savannah has changed our lives and I Iove her for it. She has brought so much of my attention to the world that is very much ignored out there...people struggling emotionally, spiritually, financially, physically while some just sit back and ignore. I was guilty of all that and then some before Savannah. Even as a therapist I had never empathized with my patients the way I do now. My life is forever changed and will never go back to the way it once was, but for that I am thankful. Savannah has made me a much better and stronger person.