Powerless. What an awful word; or is it? This past week has been horrible. Horrible for me as a special needs mom and advocate for my son. Not my worst week, I have had some doozies, but this past week could take the top 10 of "someone hold me back before I am charged for assault with a folder full of documents."
I kept on hearing rumors that once our son turned 18 things got harder with the "system", "big brother", and with all of those who, nonchalantly, strolled into our private lives, our home and our business ever since my baby was diagnosed at 9 weeks old. I didn't invite them and I wasn't given a choice on whether I wanted these people in our lives or in the life of my son. So a multitude of people, protocols, equipment, follow-ups and forms come with cerebral palsy. Please don't take this part as a complaint, for the most part, many professionals are and have been very helpful and some even hold my hand during some difficult times. A great example is the wonderful team at his school, a wonderful advocate, and a terrific physical therapist, and so on. There are others; however, that I just have to bite the bullet and let them have their moment of talking at us and showing off their text book knowledge of cerebral palsy, g-tube feeds and seizures, although I consider that moment many minutes that we will never get back; but that's all part of cerebral palsy. special need parenting and disability.
So what's my gripe? Why am I grumbling, whining, complaining? Because I never thought I would see the day I was no longer important in our son's life. In the eyes of certain professionals, being his mom is just not good enough. Being his mom, who also happens to be his legal representative, given this right by the courts, still, not enough! I get it, there are procedures, there's a process, papers and he has to be present because he is an adult, blah, blah, blah, blah!
This week just left me feeling so powerless; as if the last 19 years of tears, of fighting, of praying, of sitting in hospitals, learning, meds, meetings, and more, all vanished.
Now, I am in the middle of jumping through all of their hoops, like a monkey in a circus, trying to get some rights back because people, HELLOOOOOO, he is 200% dependent on me.
We sat in a lobby for 4 hours, he was a trooper. This young man, bound to a wheelchair, didn't complain or whine, 4 hours!!! Final verdict? Wait 6 months for an answer we needed yesterday! Wait! What? Why? Oh, his papers go before a medical review board. Ok, lady behind thick glass, you made me bring him in because you needed to see that he was incapable of doing this himself, we wait 4 hours to tell me you don't believe that he is disabled and needs a medical review board! It's the process, procedure, I know, I know!
There is one good thing to feeling powerless and cheated. God is Powerful!!! So as we go into this week, my husband, our son and myself, we go in a renewed faith and hope that whatever happens, God is still on His throne. I may be nothing in the eyes of many
, but I know that my God loves me so much He sent His son to die for me. I know my husband loves me. I know my son loves and needs me and my girls love me. I may be powerless, but my God is powerful!