Today wasn't so bad. When I think of all the bad days I've had in the last 6 years this one would actually rank up there as one of the good ones. Mack was giggly and cute - chased after her sister and generally was in a good mood.

I did have a marathon call with my mom. I really got an earfull because I hadn't talked to her in a week and a half and she wasn't sleeping. All the not knowing has really been difficult for her. She's a fixer, I'm a go with the flow -er. I had to report to her, that again, more genetic testing to find a diagnoses came back with absolutely no answers. And, in fact everything came back normal. (how could this all be normal? I guess I have just redefined normal for myself - my mom can not!) In an effort to keep her happy I reported that we had seen the behavior specialist, have an appointment with another specialist in two weeks and generally are still moving - not sure what direction to go in anymore - but moving. She feels better by the end of the conversation and hangs up satisfied that she had accomplished something. At least, she'll sleep.

I feel defeated. After a conversation with mom I always feel like there just aren't any solutions. I'm am thankful that we aren't dealing with serious life threatening and devastating illnesses. The most frustrating part is losing myself in this. Not feeling the freedom I should to live and enjoy. Bogged down by social security paperwork, applications for various services - don't get me wrong I LOVE the services we have I just wish it didn't take so much work to get them all. I actually put Mack's birthday down on my OB/GYN paperwork - I'm so programmed to fill out everything for her - I don't even remember my own DOB.

I guess at the end of the day all that really matters is...today was one of the good ones.

Today started like most -- 4:00 a.m. Mack gets out of bed, crawls around the house and starts screaming for the rest of the house to wake-up! Since she's non-verbal all the screaming is actually screaming. We wipe our weary eyes, since we had been up with her four additional times through the night, and make our way into the kitchen where she is posted centinal in front of the refrigerator waiting to be fed. I can't remember what it feels like to be a 6 year old and hungry but it must be supremely uncomfortable!

I had an appointment at her school to aid in her communication skills. She has a special device that speaks for her but it is programmed mostly by me, her mother, how would you like it if your mother literally put words in your mouth? Many years of therapy with be forthcoming I'm sure!

I wish I could be a fly on the wall. Most of the people I deal with when it comes to Mack greatly underestimate her. She's in there you just have to reach her!