We just got home yesterday from a 4-day whirlwind trip to take Hannah to see a new Neurologist at Children’s in Birmingham, Alabama. Due to Hannah’s anxiety in the car we can not make more than about a 4-hour trip in a day anywhere with her. So, fortunately our friends Mike and Michelle opened their home to us (they have done this many times and we are so very grateful). We drove to their house south of Atlanta and spent the night, got up and drove rest of the way to Birmingham just to see a new Neurologist. We really liked the new Neurologist and he opened our eyes to some diagnosis’ other than PANDAS that Hannah needs to have been checked for and hasn’t been. He was willing to send an email to our Pediatrician with the new tests that he wants run and he is also referring us to another Neurologist in Gainesville who he wants to really look into Hannah’s seizures/epilepsy issues. He opened our eyes to some things we have not been told about by the other 4 Neurologists we have seen and was the first Neurologist to admit this was Neurological in nature instead of a Psych issue; which we have known all along, but it was nice to hear.
So, now……..we wait. We wait for the tests to be ordered and run and we wait to see the Neurologist in Gainesville. Once Dr. Dure receives all the results from the tests and hears back from the Neurologist in Gainesville, he will be able to prayerfully and hopefully give us more information and insight into what we are dealing with completely. Then, hopefully, we can get Hannah ALL the help she needs to give her quality of life instead of merely existing day-to-day not knowing what each day brings.
We don’t know what triggers Hannah’s personality/mood/behavior changes and it is so disheartening, frustrating and in all honesty, sometimes frightening. In fact, not 45 minutes ago Hannah was happy, doing school work, clapping and saying “fantastic work,” bringing me her work for me to give a smiley face and then BOOM, out of the blue, like a light switch being flipped she aggressively attacked me and then herself and then melted into a puddle of tears and lethargy! Dennis was home when it happened as he is working night-shift this week and we just looked at each other….what is the cause, the trigger? Why can’t we fix this? I walked to the mailbox afterwards and the tears started falling. I am so tired and weary and some days the burden seems too difficult to carry anymore; but giving up is not an option…..so we press on but I wonder at times if our lives will ever be different from what we have endured the last 2-1/2 years and if I dwell too much on it, I just get so very sad. My heart just aches and longs for the little girl I once had. That happy all the time, never sad and never angry, sweet, loving little girl. The little girl who never in a million years would hurt anyone or herself. The little girl who smiled all.the.time! That contagious laugh and infectious grin is what I miss……I so long for her to return to us and frankly, I don’t know that she ever will and I just seem to grieve what we lost every.single.second.of.every.single.day!
I know, I hear you…..accept what you cannot change. Embrace it and move on, right? Go ahead…..I know at least some of you are thinking it and you know what? I tell myself that all the time. I tell myself….”this is your life Tamara. There is no changing it, so suck it up and deal with it, put a smile on your face even though you feel as if you are dying inside and just deal with it. You don’t have it as bad as other people, you are blessed and you should never take your circumstances for granted. Quit whining, quit complaining and just accept it and do the best you can with what you have!” Yes, I tell myself that all the time and you know what? Sometimes it works but sometimes it doesn’t and I just want to punch something! Maybe I should invest in a big punching bag….at least I could get some exercise while working out my frustrations.
SO, this whole long boring blog post just to say…..we went and saw a new doctor, we liked him, he wants to help and now we await testing and a visit with the Gainesville Neurologist to try to get Hannah’s seizures under control. Thank you for those who have asked and for those who continue to pray for us. Please don’t stop……this nightmare continues and both Dennis and I are worn, weary and stressed.
Until next time…….