A few of my journal entries

July 3^rd 2012

I decided I needed to write.  I needed to write the good and the bad things that are going on with Henslee. I needed to write about my feelings regarding this thing called Rett Syndrome or “like” Rett syndrome.  I need a place to vent to cry to rejoice and to be able to just put it out there.  I am currently writing as I hear Henslee screaming/ crying in her crib. She has been doing this for well over an hour. She doesn’t want to be held, she doesn’t want out of her crib. She doesn’t want to watch Mickey Mouse club house ( which is usually her favorite). I even have it in there playing on the Ipad in her room just to hopefully help her calm down. But nothing I do is helping.  Every time I pick her up to cuddle her or calm her down she just scratches at my face. I don’t know if she is tired? She hasn’t been her usual self in her sleeping. She use to sleep perfectly. I would lay her down at 7 pm and she would sleep until 7 am. Now we hear her up at all hours of the night just clapping or laughing. She never cries though. We have started using melatonin and that seems to be helping. It makes me sad, I have tears running down my face. I don’t  know what she needs. I wish so bad she could say mom I need………....I have to leave it blank because I HAVE NO CLUE!!!!! So today I am sad because I don’t know what to do!!!

July 4^th 2012

While at the Parade today we sat next to this little family. They had a 14 yr old daughter with high functioning Autism. She latched on to me like we had been best friends for years. She went up to Henslee and instantly turned to me and asked me if Henslee was DISABLED. I have never been asked that before. DISABLED??  I instantly looked at Jesse for some kind of answer and with a sweet nod of the head he gave me my answer. I told the little girl Yes she was DISABLED.  It stung a little ok it stung a lot to actually say that out loud. I think since Henslee is so little no one has ever said that or even really fully noticed she was different than the typical 2 year old. My new 14 year old friend continued to get candy for Henslee during the parade. Which was really sweet. She would yell to me "Jaymie there is candy coming, I will get it for Henslee." :) Maybe she noticed because she herself has a special soul and couldn’t help but recognize Henslee beautiful special soul.  I came home and quickly looked up the word Disabled. I don’t know why I guess I needed to know exactly what this word meant. I was in tears when I came across one of the definitions for Disabled = DIFFERENTLY ABLED! I loved this and this is exactly what Henslee is DIFFERENTLY ABLED. I will never again use the word disabled in referring to Henslee.  

At the parade, our new friend is right behind Henslee holding the bag of candy :)

 July 17^th 2012

Today we went to the park after our morning walk/ stroller ride! The kids loved it. I mean seriously who wouldn’t love going for a joy ride through our beautiful little quaint country town, while eating suckers and listening to a Little Mermaid sound track ;) . It rained last night, hard so we dodged all the dirt/mud run off into the road. We stopped at the park on the way home and swung on the swings. Henslee loves the swings. Let me reemphasize that…Henslee LOVES LOVES LOVES to swing. I don’t think there is anything that she loves as much as swinging. We only have 1 bucket swing at our park so we have to take turns. Henslee went first. I love to watch her swing. I love the HUGE grin she has on her face the entire time. I give Henslee a big push and then jump into a swing next to her with Nixon on my lap. We all swung and LIFE IS GOOD! Life is easy. We traded and I put Nixon in the bucket swing and Henslee on my lap. The cool thing today was that I told her to hold on and she did! She held on tight to me! She rested her head on my chest and I snuggled that little Miss as tight as I could. It’s days like today that I realize I can do this, I understand Henslee and she understands me.

 August 1^st 2012

Miss Henslee is doing the stairs. I am so stinking proud of her. She is up to about 2 steps all by herself. After 3 she sits down and sucks her thumb J She is one funny girl, she thinks after doing the first 3 she needs my help and all I have to do is put my hand on hers and she will do it. She is so smart and is starting to figure things out all by herself.

Here she is sporting her awesome diaper and shoe socks :)

August 2^nd 2012

Today was a great day! I was able to get a hold of Katie’s Clinic which is a Rett Syndrome clinic. They scheduled us for a appointment in December.  I sent Henslee’s previous test results to them and they had a chance to evaluate them. From the conversation I had on the phone with their coordinator they want us to have another more specific Rett Syndrome blood test done on Henslee. Which could be very tricky, since we are unable to see a Geneticist until February due to their busy schedule.  So I called Henslee’s Geneticist that we saw in Phoenix a year ago. Shockingly she was able to order the blood test for us. So we are waiting for that to come in the mail. As soon as that comes we can have the test done and see if it is Rett syndrome that Henslee has. I am  excited that we are moving forward. It’s a really weird feeling though. I spoke with Jesse about it because it seems so strange to be excited for this test.  Jesse said maybe it is because we already know that, that is what she has and it will just give us the confirmation. I feel extremely sad and extremely happy all at the same time. Is that even possible??? Now we will just wait for the test to come in the mail.

August 8^th 2012

Well last night was……interesting. Last night I was tossing and turning all night, which is not the norm for me. Usually the second my head hits the pillow I am out. But at 2:00 am I heard Henslee screaming. Not laughing or clapping which has become the norm for her but she was yelling and screaming. Instantly my thoughts went to all the little girls I have read about that have Retts.  I remembered reading that this is typically what they do the Screaming/ Crying. I got up and went and got her and snuggled in the chair with her. Jesse came in and wanted to hold her. I knew he needed to work today from 9-9 so I told him I would just hold her and get her to calm down. But he wanted her, he didn’t care that he had a 12 hour shift the next day. He wanted to hold his baby girl.  So I passed her to Jesse and  went and layed in bed. I couldn’t sleep. So many things were on my mind. The amazing love Jesse has for Henslee. I can’t even describe it. The amazing love I have for both of them. I also felt a lot of heartache. I knew that this was one of those moments where Rett Syndrome was very clear to me. It made me ache for Henslee. It made me ache for the little girl that would be consumed by this terrible Syndrome. To be honest I am scared. I am scared that Henslee will lose all function in her hands, lose the ability to walk and to start having seizures.  I am scared that I will not be able to handle all the major lows of this journey we are on. After Jesse put Henslee back to bed we had a chance to talk. Henslee is Henslee Jesse always says. She will make her own path. I need to remember that instead of being scared for what lies ahead.

 Joshua 1:9

 Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.