Sunday, October 23, 2011

Sweetness

Lizzy came home this morning from Nana and Papa's. Missed her. You can either turn the volume down on the music player at the bottom of the page or mute the video music. The music in the video is from Heather Williams and is called I'll Take It From You. Go to iTunes and download it.....better yet......get the whole album, it's awesome!


Have a great Sunday!
God Bless!

Saturday, October 22, 2011

A Heavy Heart

You know how you have "hi's and low's" of your life? Well, I have been struggling with the low's of this life. As a parent of a child with disabilities, you go through waves of mild to severe depression. I have been struggling with this for years.  Lizzy is a beautiful girl and I am so thankful for her. But. Yes, there is a but. She is not going anywhere. We built our home to accommodate her here for the rest of her life.  Sigh. I have connected with a family that has three grown daughters. Their oldest is 31 and has CP. A severe case. Her name is Betsy. Cheryl (the mom) and I have been emailing each other for a couple of months mainly with my questions about how her life is now. She and her husband take care of Betsy. Well, he also works outside the home. They don't EVER get away. Ever. Who would take care of Betsy that would be willing to be with her 24/7 for a few nights? That will be Damon and I in 15 years. Our life will be.....Lizzy. It isn't something I am smiling about. It's something that I have become depressed about. Let's just be honest here. Anyone wanting to take care of a handicapped child when they are older.....raise your hand! Even a child that is completely normal.....anyone? Children are meant to leave their parents. And he said, 'This explains why a man leaves his father and mother and is joined to his wife, and the two are united into one.'  Matthew 19:5 (NIV)

I feel like I have been given this gift of seeing what is coming for us. God has placed Cheryl in my life for a specific reason. It is possible to care for your child until our Heavenly father decides it's time. I get a little excited to type those words....it's time. Those words mean so much to me. When "it's time" for Lizzy......she will see. She will walk. She will speak!!!!!!!!!!!! 

I have taken no photos of Lizzy this week and I feel bad about that. My doctor has decided that it was time she prescribe me an anti-anxiety medication. She says "Lisa, you have done this for years without medication, its okay." I feel defeated. 

Cerebral Palsy doesn't just affect the person, it affects the whole community that person is in. I am so thankful for Cheryl. I can't wait until we meet. I have a hug for you that may linger for sometime! God bless YOU Cheryl! 

Sorry for the lapse in posts. Life has been happening!
God bless.

Wednesday, October 12, 2011

Guilt

I want a do over. Badly.

We returned home from Hilton Head Sunday night and I was tired. My body ached all over. I didn't want to put any kids to bed and wanted to just take a bath. I was so exhausted. Monday came and Damon has to be at school but the kids had the day off. Lizzy was so whiny and Jack missed me so he was literally hooked to my leg the entire day. Emily was with her Nana and Papa, so I had some relief. Damon had football practice after school and didn't get home until 7:30.

Scroll back the time to 4:00 when Emily comes home. Jack is excited to see her and the entire house gets LOUD. Lizzy is still whiny and cries when you leave the room. Emily still has weekend homework to complete, kids need dinner, house is still a mess, and Jack has just asked for the millionth time today to play video games. I lost it. Everyone got their feelings hurt and I feel bad. At this point, I need something to settle me down. Then.....Damon walks through the door. Ahhhhhhh.......as he looks on the stove at the dinner I made he says, "I think I'm going out with the guys to watch Monday night football." BREATHE LISA, BREATHE!!!  I think I blacked out at this point.

I have been thinking about Monday evening all day yesterday and today. I feel so bad. I want to rewind time and handle it differently. I want to hold Lizzy while she was whining and crying instead of saying "work it out" or "c'mon Lizzy".  I wish I would have held my tongue and spoke more gently to Emily and Jack. But I can't and it hurts.

Do you ever feel like you are on this merry go round waiting for the ride to stop.....and it just doesn't? I'm waiting for it to just slow down for a bit. I KNOW that my life would be busier if Lizzy was a normal 12 year old. Surprise blessings! Love those.

I am thankful that I get to wake up and have another day to make it right. Will Emily and Jack remember that on Columbus Day 2011, I turned into Roseanne Barr? Probably not and I am thankful for that!

Six treatments. I wish she could do more every month but it is just too hard with scheduling. She went by herself on Sunday and did fine.



A cool and rainy afternoon ride home but Lizzy loved it.


One of her favorites. Has to have it right up to her face:-)


Have a great night.
God bless.

Friday, October 7, 2011

Diving For Healing

Yes! We are back. Lizzy and I slept really well last night! The Hampton Inn has the most comfortable beds. You melt right into the pillow.  I had trouble getting the bug out of the bed this morning!  See what I mean?
Lizzy is in there...somewhere!

She does this thing with her chin where she sweeps it from side to side making a swooshing sound!


She tried to go back to sleep.


We had a good first day. Lizzy's ears bothered her and she cried for a bit. Dr. Pete said that her body needs to adjust to diving again. I was in there with her so she had her momma! No nose bleeds though! While I was in the chamber with her, I was able to catch up on The Mickey Mouse Clubhouse Show and Handy Manny! Remember, we are in the chamber for 1.5 hours.  Also, I won't be taking pictures of her in the chamber....since I am in there with her. The clinic is about a mile or so down the road, so we walked there. It is so beautiful here. Walking with Lizzy gives me an ego boost. People are constantly turning their heads to see her. It is a big stroller and everyone is curious. I tell myself that they are looking at me cause I am sooooooo good lookin'! Keeps me walking fast! It is funny because here you see people running and biking. I am pretty sure this is a very healthy town. Maybe the reason people are curious is because you don't see a person walking a 12 year old down the street. They just don't see it here.


Nice glasses mom!


She is my supergirl!
Thanks for all the messages and for praying for us. I love having the support of family and friends. The staff here at the Hampton Inn remembered us and offered to help us in any way! Love this place!

I wanted to share a video of Lizzy from the other day. Just so you know, we only say shut up to make her laugh. Enjoy!




God bless! 

Thursday, October 6, 2011

Proud Momma

I am proud of all three of our children. We have truly felt blessed to have our two girls and our little buddy! Emily is our middle child. She turned 9 in August and loves gymnastics, animals, and writing. She is a wonderful daughter and I still can't believe that she is mine! Although Lizzy is our oldest, Emily has all the characteristics of a first born.

The other night she asked me if she could feed Lizzy. I think I may have answered "I don't think so, Em." She started telling me that she was old enough, she wanted to help me, and that I should let her. Lizzy gets a feeding right before bed and has medicine in it.  I wanted to be sure Lizzy got every bite. There is singing involved and I just didn't think that this control freak could risk it. Maybe another time.

I am so glad Emily was persistent.  She SHOVED me into a #2 position and I loved it!





Looking at my girl gently wiping her sister's face.
All gone!

When she finished feeding Lizzy, Emily says to me "told ya mom."  Yeah, I had that coming. Emily has been wanting to help with Lizzy in general but I've felt that she isn't ready. I am so proud of her. She fed her the exact same way that I do. Right down to the way I sit on the floor with her. I feed her on the floor because it is easier to just go where she is!

We are back in Hilton Head for oxygen therapy! We got here about 6:00 tonight. I'm so excited and can't wait to tell you all about it! 

God bless!



Tuesday, October 4, 2011

Would You Rather Be #1 or #2?

No, I am not talking about NASCAR or things you might be doing in the bathroom. Read on:-)

Our van has a really great feature. One the driver side door there are two buttons marked 1 and 2. I am number 1 and Damon is number 2. These are the settings we like the seat set at. Sometimes I'll get into the van and won't have to adjust the seat. I like that. Knowing that I can get right in and go! Then there are times I get in and my seat has been adjusted. It is set for driver #2. There have been times when I will TRY to drive as driver #2,  but get really uncomfortable. So, with just a push of a button, I can put it right back. But, it still upsets me. I am not great with change or when I expect something one way and get another, it LITERALLY throws me off for a bit. So #1 is comfortable and preferred. I am going somewhere with this.

Damon took the kids to the movies last night. I get a text from him asking to meet him and the kids for dinner around 6:30. I immediately tense up thinking about taking Lizzy out to a restaurant THAT late (really isn't but her bed time is 7:15)! I wanted to text him no, but decided to do it anyway. We get there a little before they do and I roll up with Lizzy. I walk in and find the hostess looking at me. "What can we do for you, where would be best for you, we want to you be comfortable, whatever we can do just let us know!" I thought to myself...wow....this guy MUST know a person with disabilities! He did. His brother's wife's aunt's cousin.........er......someone. I can tell from the way Lizzy and I are treated and spoken to if their life has been touched by a person with special needs.

We get seated and Damon shows up with the kids. The server comes to the table and never acknowledges or even looks at Lizzy. I was fine with it but again, probably doesn't know someone with special needs.

It really got me thinking. There are people that will sit in driver #1 all their life. Comfortable, safe, predictable, etc. Happy to never move that seat a centimeter to see if that adjustment would make a difference. Maybe moving the seat UP would let you see things better. My point is this. You can either sit in the number one position with the world moving all around you. Never leaving your comfort zone to experience things that could change your life. Or you could push that #2 position to stretch and grow! Learning new things, getting to know new people, reaching out to a specific communities of people (cancer awareness, CP awareness, Autism, ALS awareness).

I believe that YOU have been touched by reading about Lizzy. I bet that when you see a child with cerebral palsy, you feel as if you can connect with that child (or adult). You may feel "less" uncomfortable around them. Maybe the grunting or squealing doesn't bother you anymore. There may come a time when you will volunteer at a local school in a classroom filled with kids like Lizzy. You will feel blessed when you become more aware.
Promise.


I am creating a video to bring more awareness to cerebral palsy. I would love to have your pictures and videos. This video will be posted here, on the blog,  which means it will be published on the internet.

It is finally cooling down here and that means it is very difficult to keep Lizzy's hands and feet warm. It you come across some slippers for children that STAY on, let me know. I need them. As soon as her shoes come off, she tears her socks off, so we need something that stays on! Thanks!

By the way, I am a #1. Trying to push myself into a #2 position. It is easy to get comfortable....even with Lizzy!

 Loves her duck!

Thanks Kristen Rogers for the pom pom for Lizzy!


See the colored lights from the toy lit up in these pictures? That means she has learned where the button is to turn it on! A-ha! Little blessings!

Go Lizzybug!


Have a great day.
God Bless.


I wore yellow for National Microcephaly Day. Did you?
9-30-2011

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