A Long Few Days

Okay, it was bad enough that Hurricane Irene decided to cut my girls camping weekend super short, but then she went and got rid of the power so Alicia missed three days of school this week.  It has been a very trying few days for me being home all day with Alicia.  She was very upset and agitated at times because she is used to her school routine.  We had lots of screaming, biting and hitting this week out of pure frustration and almost a broken nose (mine).  
However, even after all this, I try to keep a positive perspective (which is truly trying).  I need to keep in mind that it's not Alicia doing this out of a behavioral problem, but it's the Rett Syndrome taking over and her not being able to control it.  Could you imagine if you couldn't talk and verbalize your wants and needs?  It has to be completely frustrating, I couldn't imagine!  As many parents of special needs children; we get "the look" in public because people think we can't control our children.  I used to always bite my tongue and not say anything but there have been a few times that I haven't.  People should never make a judgement by just watching how our children act in public, do they even realize what it takes for us to get out of the house and to the store?  No, they have no idea!
Be thankful if you have children that can speak and are healthy.  
I continue to take each day one at a time and will continue to do so.  
I am looking forward to Alicia's appointment in NY.  She will be seeing specialists at Rett At Montefiore, that specialize in Rett Syndrome.  We are hoping to get some guidance in how to care better for Alicia.  There will be various testing I'm sure that the team will want to do (some repeated because she hasn't had them in a while (like an MRI and EEG) and that means many trips to NY.  But I don't mind in the least.  Her appointment is coming up on September 9th so I will be sure to fill everyone in.  
Alicia's fundraiser is also coming up soon.  We are having a Pony Rides Fundraiser for Alicia at my cousin's horse farm in Bristol.  It is at Oakendale Farm 315 Shrub Road Bristol, CT.  We have gotten a great response from people that are going to be attending.  We are even going to have a bake sale because so many people have shown interest in baking goods and donating their time to help sell them.  I could never thank my family and friends for the amount of love and support that they show me and my family.  Even though most don't realize how truly hard taking care of a special needs child is; they admit that and just ask how we're doing or give a hug and a kiss.  That means more to me than most will ever know.  
I hope everyone is doing well and I look forward to seeing many of you soon!