ALL HALLOW'S EVE

posted by Jenn Solomon, Wednesday, October 30, 2013, 10:30 PM

Dear Friends and Family,

I encourage you to read today's entire post as it will give you a different perspective as you hand out your candy tomorrow because there is a special kid in each neighborhood...please know I am not complaining. I am giving you another perspective about Halloween and how challenging it is for some.... 

Today's Update: 
Rachel did great today! She walked for 10 minutes in PT and we figured out how to help the clicking in her hips. We need to do certain stretches to help her hips and abductors before she starts walking. Here is a video: http://www.youtube.com/watch?v=ohR3no8E6RQ You'll notice that the therapist is guiding her on how to pick her toes up and focus on stepping in instead of out. It is so great to see how Rachel responds to the directions. The therapist and her are a great match!

During OT she got dressed again this morning making more progress on doing it herself. She also got fitted for new ZEBRA AFO's and a Hot pink hand splint! So excited that we don't have to do that when we get home.

Lizzie and Alura came to hang out with Rachel while I went to the office. Then Friend Kim showed up which was so great! And another counselor from Double H came, Steve. Steve joined all the kids for dinner and then hung out with Rachel for a bit. Rachel was so excited to see him...she told me that they were going to the Parent Room. Her way of telling me to get lost so that she could hang out (cough cough flirt) alone with Steve. She has a MAJOR crush on him. 

Rachel got a care package from Jones & Bartlett today! She was so unbelievably excited!!!! She has already tackled the cards and read them all aloud! (see the photo in the gallery ) She has been fawning over the One Direction book and has already figured out how to work the DS3! She is saving the lego set for OT because as she says Ann will LOVE to do this with me...(in all seriousness the Lego set is perfect for OT). There are many other items in the bag that she is designating for time with visitors or to use during OT. She has also been devouring the candy. THANK YOU JBLers!!!! Feeling the love.

HIP HIP HORRAY FOR HALLOWEEN
As we get ready for Halloween I have to tell you that I am out of my skin excited!! You see, as a mom of a kid with Cerebral Palsy Halloween usually totally sucks!! The drive ways are too long, and not always paved; there are too many stairs; spaces between houses is too far apart; nothing is well lit so it can be a hazard. I inevitably end up carrying Rachel because she gets tired. Friends always mean well and invite us along but it is still so freaking hard. Kids are excited on Halloween they want to run door to door to collect their loot. So we are usually trick or treating long after our friends have started their sort and trade. Coming in a half an hour later and exhausted because it takes Rachel that much longer and that much more energy to trick or treat. Last year because Westford had Halloween delayed we went a 2nd time and while the bigger kids did their own thing Lilah stayed back and trick or treated with Rachel. Where the driveways were too big or when there were too many stairs she hooked Rachel up and got loot for both of them. (love that kid)  Another part I hate about Halloween is the people that make unsolicited comments like: wow are you lucky that your mom is giving you a piggy back or you're too big for the carriage. I'll be honest I got to the point I was rude and said, she is disabled and left it at that. Sometimes it is exhausting trying to make someone else feel better about the fact my child has a disability and they are a total jackass.

Before I knew the surgery date I started planning a daytime trick-or-treat on our street for the special kids in Chelmsford and Westford where night time door to door trick or treating is too challenging. I had been planning it in my head since last year. You see it is so important to me that Rachel feel part of a community. I want her to have the same experiences as every other kid and damn it I don't want it to be hard. I want her to do the candy sort at the end of the night in a state of bliss that she had at the age of 3, where she didn't know she was left behind or understand the neighbors unsolicited comments. 
Tomorrow during Trick or Treat we will be part of a community where none of the kids can walk. Where no one will run ahead and no one will start the sort without my daughter. I cannot wait!! I want to the 2 hour Trick or Treat around the hospital to be 20 hours. It will take everything I have not to cry because for the first time on Halloween she will be like everyone else. For once the fact that she had cerebral palsy and can't keep up won't matter at all.  I cannot wait!!!

Tomorrow as you give out candy and treats to all the little cuties that come to your door I ask that you have a little patience. If they don't say thank you they could have Autism and just don't know how. If they are being carried they might not be able to walk. If they aren't fully behaving they could have a behavior problem and simply just not understand especially with all of the excitement.  Please know that 99.9% of all kids are good kids with big hearts and events like this might be difficult for them. And if this is too hard just leave your light off.  Because the last thing you want is a mom tearing up because without even knowing you said something that broke her heart just a little.   

Love,

Jenn & Rachel