We embark on yet another adventure!

Kids do not come with instructions.  And special needs kids?!?! They dont come with instructions, a how to manual, or even a diagram to give you a hint of whats in store! Of course I am using my sarcastic sense of humor here, because even parenting typical children has its challenges! However, a map to help navigate the endless appointments, specialists,  services and agencies sure would be nice! Its more than overwhelming,  and sometimes I just want to curl up, take a nap and wake up to a different set of circumstances.  And by that, I mean that maybe these agencies and powers that be that seem to know more about my daughter's needs than I do would make things just a little easier. Nothing has been easy since Jaylyn was born. Not even getting the necessary testing for diagnosing and treating her. I certainly do not expect people to go out of their way, make exceptions or bend over backwards for the simple reason that Jaylyn is special needs.  Just perhaps be more aware of the already difficult time parents are having. Understand that we are grieving. We do not want a pity party, but we certainly do not appreciate the seemingly purposeful hard time we are given getting care, services and benefits for our children. 
Tomorrow's adventure is to the CP clinic at Shriners. We were exclusively a CHOP family until we were faced with more obstacles getting services and benefits than ANY parent should. We were faced with the reality that Jaylyn will need assistive devices and equipment that we couldnt possibly afford.  Even my weekly insurance premium is too much and I will be faced with a difficult decision when it comes time for open enrollment.  Thank goodness for the good people at Shriners who provide Jaylyn's orthopedic care and equipment free of charge! I hope to one day be in a position to pay it forward because I firmly believe in it! I know when I had the opportunity to give a sick little girl a doll for Christmas that was sold out, the smile and joy it brought her filled my heart. The little pearl beaded angel she had given me in return still sits in my china cabinet as a reminder of that day and the reason behind it. I have to keep thinking that all the difficulties and challenges we are facing now, will lead to something good in the very near future. Jaylyn is my little reminder every time she smiles at me.