Wednesday, December 12, 2012

A Night of Normal

It doesn't take much to make me smile. When someone takes time to do something for my daughter, Lizzy, it's a big deal. Even something little, like sending her a card from an elf from the North Pole is such a big deal with me. Lizzy has no idea who sent it or even what it means, but I do. Michelle P. Not only did you make me smile and feel like Lizzy was important to you, but you also made my other kids feel special. Thanks so much. I hope we can meet one day. Now that makes me smile bigger. That's right.....we've never met. 


Christmas time is always a time that Damon and I feel lost with Lizzy. Our emotions run high and we start feeling bad that she just has no idea what is going on. We are grateful for Lizzy and feel blessed everyday, but we do feel sad for her this time of year. Dang it......I hate sulking or having anyone feel sorry for me. I was feeling this way about a week ago......but some special people helped. Our church pulled together and had a prom for children with special needs. What a night. I swear, Lizzy didn't have cerebral palsy that night. I felt like Lizzy could see and understand everything that was happening around her. She had no disability at the prom. I felt like the mom of a normal teenager! I got her a dress and some bling bling! Lizzy wore new boots and tights! If Lizzy could speak, she would say her best accessory was the broach that her sister, Emily, bought for her.


Me: Em, I think we should get Liz this pin that says joy. I like it. It's perfect, I'm getting it!
Em: Momma, I like this one better.(She is holding it for me to see)
Me: Eh.....I like this one. Lizzy laugh IS pure JOY Em! Let's get this one.
Em: But momma, Lizzy is one of God's children and I think she should have this one.

And it looked perfect!




Thank you Dave Moen for having a heart for my child! Our family loves you and feel so blessed to have you in our lives. Go bless you!

So why is this prom such a big deal to me and parents of the 35 kids that came? It was part of normal life that we got to experience. The excitement that Em and I had when we went looking for boots and other stuff for Lizzy was something that we won't experience again. Lizzy thought we were just going to church because it was at church:-) I felt like I was a part of the normal parents life. You know, the ones without a child like Lizzy. Felt good. Really good! I saw a lot of compassion that night. I felt "included" and excited for Lizzy. So thank you Beach Church and everyone that was involved in any way. 

Some people come into our lives, leave footprints on our hearts, and we are never the same.

    -Franz Peter Schubert






Tuesday, November 13, 2012

An Extraordinary Mom

I will admit that I am trying my hardest to be completely different in how I raise my children. I was raised by a man that seemed to have so many contradictions, I was confused about life when I left home. The best gift a parent can give to their child(ren) is independence. I felt like a lost puppy roaming the streets trying to find a home when I left for college. With that said, I want my two youngest to leave home confident and ready to work hard for what they want.

With that said, I had two moms tell ME that I was a great mom yesterday and another person tell me that I was an extraordinary mom. What? Me? I say this not to give myself props for the bang up job I am doing:-) I say this because I am doing what any mom does. I mean, have you heard of the mom that rolled her kids up in a blanket and laid on the during a tornado that came through their town. She lost her legs!!! She says people are calling her a hero but she says it was being their mom. I would have done the same thing.  So, I don't mind people telling me that I'm a good mom, because that kind of validates me as a mom.

However, the greatest validation came from that person that said I was an extraordinary mom. I was sitting at the dining room table with my daughter, Emily. We were doing some homework together and she looks me square in the eye and says, "Mom, you are and extraordinary mom." I was without words.....speechless. Ask my husband, I have something to say about everything. She went back to her work and I was left there whimpering. I finally said that I loved her more than she could ever know and it was over...just....like....that.
My beautiful Emily.


Does it take an extraordinary person to raise a child with special needs? I really don't think so. As a mom (any mom), you connect with this child as it grows in your belly and out of the belly. I have met many parents that are beginning their journey with a special needs child and feel like they will never make it. Honestly, I have grown as a parent right along side of Lizzy growing into a young lady. I feel like we have matured together. You can do this. I am not saying it's easy because raising children without needs is difficult. It's hard. It makes your heart ache. You don't sleep at times. Your marriage suffers. Your physical appearance suffers. But then, 13 years have gone by and I am left thinking, "Hey, I did this! I AM DOING THIS."  Well, I couldn't do this without my husband, and his parents. So thanks babe. I love you soooo much.  Mom and dad....I love you and am so thankful you have been there all 13 years!

Laughing with dad.

Nana loves her Lizzygirl.

Lizzy and her Papa.

I have a blessed life and I am thankful for everything and everyone in it. Us families with special needs kids need your support. Pray for us. We need it everyday! 


God Bless......

Oh.....Lizzy is going to the prom!!!!!  Wait til you see.........



Wednesday, September 19, 2012

A Teenager

As I'm waiting for the HOMEMADE cookies to bake for her birthday tomorrow, I think about how Lizzy won't have one. Well, I wouldn't give her one because I'm afraid she'll choke. But, mark my words, those ladies at school will find a way to get it down her gullet. Will they grind it up in her applesauce? Maybe soak a cookie in milk for a few minutes? I'm pretty sure Lizzy will have one of those birthday cookies.

Thirteen! Is that possible? I've had people ask me about her birth and while it may not hurt so much anymore........it's a lot to write. Lucky for you, if you click the Lizzy's Story tab, you can read it there.

So we have a teenager in the house. Cool. Happy Birthday Big Girl!

******************************************

I wrote that last night. She had a birthday party at school. They truly love her at school. Her teacher brought in cupcakes and ice cream. The teacher did this. Thank you Ms. Johnson. She had a crown and princess wand. I can't believe how they love her so! Thank you Ms. Stephanie and Ms. Ruby! I love you all.

Ms. Johnson talking to Lizzy.

13 year old young lady. Look at her little hands in her lap:-)

Ms. Ruby and Liz

Ms. Stephanie and her buddy

Lizzy dancing

Ms. Johnson and Liz

Happy birthday Zee Zee! Oh, and if you are wondering if Lizzy had a cookie.....she didn't. She had a cupcake!

God bless.





Thursday, September 13, 2012

"Mama"

Life has been happening here. Exciting news to share with you. I can honestly say that I had dealt with Lizzy never being able to talk. I was fine with it. I wouldn't have to deal with a know-it-all teenager talking back to me (already got one of those and she is only 10!) or telling me she hates me (I've seen it on TV so it MUST happen in real life....right?). I was fine with it until I saw this.......
video

Lizzy Viele is almost 13 (9-19-1999) and she said her first word and it was "mama"!! I could barely contain myself. They had been telling me that she was saying it but I would never hear it. So they recorded it for me. I do believe in miracles. She knows who her mama is and she also knows when she is going "home" from school! Watch my girl here.

video

Her aide, Ms. Rene, move home with her boys, so we have Ms. Ruby and Ms. Stephanie that love on her all day. Lizzy is the only girl in the class so she gets some special treatment. Lizzy likes the word "stop" apparently. Listen to her tell Ms. Ruby to stop. 

video

I love the ladies that work with Lizzy. In each video, they try to get her to say mama too. I am blessed. My Lizzy can speak words. Miracles are blessings from God and I am so thankful. 

God Bless!





Tuesday, July 31, 2012

Lizzy and Her Olympian

Have you ever met someone that never talks about themselves but you know there is something super special about them? Amber has been helping in the Special Needs Ministry at our church for some time now and loves Lizzy. Lizzy knows her and loves her right back. Amber is humble and God has given her a very special talent. Her love and passion for special needs kids isn't what I am talking about. Amber is an OLYMPIAN! Yes, Amber is a 2x Olympian, 2x National Champion, and Olympic Trials record holder for the hammer throw. She is sponsored by Nike and representing the USA in this years Olympics. I found out way after she had been hanging with Lizzy at church. I don't know if I could ever be this humble. I would want to toot my own horn just a little. Not Amber! After coming back from Olympic trials, she came to church and got right back into it with Lizzy. She is just an awesome person and we love her. I want to support her in anyway that I can. An Olympian that supports the special needs community? Cool! Good luck in London, Amber! We love you.






Follow her blog here

God bless.

Sunday, July 8, 2012

The Beach

We have only taken Lizzy to the beach twice, including today. Partly because Damon and I both have to be there and one of us isn't a fan of the beach. The sand gets in everyones nook and cranny which spreads to all over the house. We had planned to just take her, get some photos then split. But, we went early enough so it wasn't too hot so we stayed for a bit. We still had sand everywhere....including my bed????

One thing that Lizzy likes is listening to toddler songs on Pandora. So I put my iPhone in a freezer bag and she loves it.








Yea, we did get looks of looks and stares. People are curious and we get that. I don't want to say that we were a specticle but it seemed like all eyes were on us. I was okay with it. She would squeal and we would say, "wow Lizzy, must be a good song!" Yes, she scared a few with her spontanous squeals.

We are thankful for her tolerance of the heat. When we left after two hours, she was baked! We must have done pretty good with the sunscreen because she no evidence of even being in the sun! I am a completely different story. I make sure everyone had some on and forgot about me. OUCH!

Lizzy is enjoying her summer. The J.O.Y. school has been wonderful again this summer. I'm so amazed by this church and the outreach. This is the 28th year for this school! The community donates financially to this outreach and it touches so many families. There are adults that attend. My guess is that they have been attending for years and years probably since they were children. We are blessed to have a program that can take my child and give me some time to spend with my other children this summer.

I pray that you are having a wonderful summer. God bless!


Thursday, June 21, 2012

What If?

Would you agree that you have made an impact in someones life? Given advice that changed a person's life? Stopped someone from doing something that might have caused them harm? Even something as simple as holding the door for someone or giving up your seat. That may have shown a person love or compassion that they  thought didn't exist anymore. What if you never existed or was born? Would God have used someone else to impact that person's life?

I have often thought to myself, "what if Lizzy never made it at birth?" I can't tell you the number of people that tell me she has been a blessing to them. I know that she has made me grateful for many things. My big fat legs that can carry her 75 pounds around....thankful for those! My sight.....I would give her my sight in a heartbeat. I 've had many conversations just on gratefulness with others. However, I have never heard of Lizzy "saving a life" until today.

A 12 year old girl had been having trouble. Not sure of all the details, but having migraines and was put on a suicide watch list. Suicide watch is an intensive monitoring process to ensure that an individual does not commit suicide. Suicide is ending your own life. The mother of this little girl is a friend of the man that heads up our Beach Buddies program at church. He thought that if this 12 year old girl came in and became a beach buddy to one of the children (not Lizzy) that she would be impacted in someway. The one child that he had in mind was very active and full of energy. However, he was disappointed because the young girl didn't seem interested.  What you will read next is verbatim from our Beach Buddies director.

Ok here comes the awesome part, I sure hope you are sitting.


Oddly enough, my little bundle of energy had almost no effect on my friends daughter, I was really surprised. But another kid in our room did. My friends daughter had been watching Lizzy. She hit closer to home, as my friends daughter explained,“she was my age, is legally blind, and with all that CP comes with it doesn't stop her from laughing and having a good time" and it's so true, your daughter has touched so many people, I didn't think of her because she likes going for walks, dancing and as much fun as she can pack into her time with us. Her buddy also needs to be physically strong to be able to keep up with her.

SO in a nut shell, after watching Lizzy for only 2 Sundays, my friends' daughter's perspective has drastically changed. She now sees hope, but also strength to go forward. My friend's daughter was taken off the suicide watch list on Friday. I have never been so moved by an event that unfolded right in front of me. All I can say is we have one big God.

My eyes are filled with tears and I am so touched and proud of Lizzy. I have never met this girl or her mother but plan to this Sunday, I hope. Is it possible for someone who has no communication, no vision, and has cerebral palsy to really have an impact on ANYONE? So I go back to the question that I often think. What if Lizzy had never survived that birth? She and Lizzy are 12. God had a plan for Lizzy and for this girl. Even if this is the only person Lizzy will ever touch in her life, God used her. 

If God can use Lizzy, he can certainly use YOU and me. Remember, you are not worthless just because you have a disability, or may not have a job, or have no idea what your next step in life is.......he can use you. Just be willing and open to it.


God used Lizzy. A little girl that loves to shred magazines and listen to children's music. A 12 year old girl with special needs. A happy girl who will soon be a teenager! 
God bless.






Monday, June 18, 2012

A Real Father

Only God knew what kind of man I would need as a partner and father to our children. I feel like I didn't have a father that supported me or spent quality time with me growing up. I met Damon on the second day of college in 1991 and KNEW he was the guy! As I was making this video for him, I could not believe how much time this man spends with his children. He is a wonderful dad and I know that God made him for me.

*Pause the music player at the bottom of the page. The video has music.


Happy Father's Day babe. Thank you for loving our children with all your heart! I love you.

God Bless.

Tuesday, June 5, 2012

I never knew her. I only knew her momma through facebook and CP Family Network. All I know is that she is finally home. Danielle was 27 and she is finally home.



Her momma took care of her for 27 years. 27 years of diaper changes, feedings, and sleepless nights. I can't imagine how many nights in those 27 years, she was on her knees in prayer. God bless you Lee!

Lizzy can scare me at times. She will throw up for no reason. Have a big seizure out of the blue. Cry when I am sitting right next to her. My reaction is horrible. I always think, "well this is it, something is happening to her and I'm gonna lose her." WOW! I am such a pessimistic when it comes to Lizzy. From the way people look at her to what I think people might be thinking. It's so exhausting. I would like to think that I am not like this ALL THE TIME, but I am positive (hey, there it is....optimisim) it's only with Lizzy. 

When Damon took Emily and Jack to Disneyworld, it was just Lizzy and me. I was able to give her so much attention. I have fallen in love with her again. She just loves to sit.....next to me. Just sit. We did it for an hour. I started to focus on how much she meant to me and what she COULD do. I was so content. While we sat for that hour, she  had a seizure. I just kept telling her she was a big girl and could handle it. Wow....I need to remember that the next time I become Lisa the Pessimistic:-) I'm a big girl and can handle this because God gave her to me and promised that he would not give me anything I couldn't handle. 

School is out! Lizzy will be attending a summer program three days a week. I am so excited that she can continue to laugh with friends and be stimulated with activities she won't have here. It is called the J.O.Y. School and Pawley's Island Presbiterian Church offers this progam to children with disabilities FREE! 

Lizzy is doing great. Happy and healthy! 

Lizzy loves to shred magazines! The sound and the way it feels. She will shred it until they are the tiniest pieces. It also gives me time to get some things done. 




Happy girl!

God Bless.

Thursday, May 24, 2012

When Life Changes

My life changed......in 1999. I had just finished my student teaching and was offered a position teaching 4th grade. My husband and I were looking to buy our first house and life seemed to be rolling along perfectly. I was just a few months pregnant and thought life couldn't get any better than this. We had so much to look forward to. 

So why did my life have to change? Why did I feel like God was saying it was time to stop trusing people? Time to start feeling like we lost something. Was this his plan? For me to be so angry? Why couldn't she just have been delivered earlier? Why? How could this possibly enrich our lives? 

There are no words other than "I just can't believe it" that come from your mouth when your life changes. You become numb to everything and you walk around in a fog. There are several life changing occurences that make you feel this way.  Here are a few:
  • losing a job
  • a death
  • divorce
Mine was a death of what I had hope to have in a child. My daughter was not going to be a normal girl, lady, or woman. I have grieved many things for Lizzy. Her first crush, graduation, wedding, grandbabies, and right down to her seeing my face. Why do we have to endure so much heartache during the holidays and on her birthday?

I understand that a baby changes your life anyway, but having a child with disabilities is a bit more complicated. Therapies, equipment, specialists, medications, etc. This was not the little family unit that I envisioned when I went into the hospital to have her.

But God has been faithful. He has walked with us through the hurt. Sometimes, it felt like it was too much to bear. He has constantly shown to be faithful in his promises. His promise of never leaving us. God loves me and I feel his love and his presence more when I am holding Lizzy.

Here are the lyrics to Britt Nicole's song "The Sun Is Rising". When you feel like your life has changed and God has deserted you, read these words. You can find the song  here.

When life has cut too deep and left you hurting
The future you had hoped for is now burning
And the dreams you held so tight lost their meaning
And you don't if you'll ever find the healing

You're gonna make it
You're gonna make it
And the night can only last for so long

Whatever you're facing
If your heart is breaking
There's a promise for the ones who just hold on
Lift up your eyes and see
The sun is rising

The sun is rising

Every high and every low you're gonna go through
You don't have to be afraid I am with you
In the moments you're so weak you feel like stopping
Let the hope you have light the road you're walking

You're gonna make it
You're gonna make it
The night can only last for so long

Whatever you're facing
If your heart is breaking
There's a promise for the ones who just hold on
Lift up your eyes and see
The sun is rising

Even when you can't imagine how
How you're ever gonna find your way out
Even when you're drowning in your doubt
Just look beyond the clouds

Just look beyond the clouds

Whatever you're facing
If your heart is breaking
There's a promise for the ones who just hold on
Lift up your eyes and see
The sun is rising

The sun is rising

Even when you can't imagine how
How you're ever gonna find your way out
Even when you're drowning in your doubt
Just look beyond the clouds

Amazing, right. Just look beyond the clouds.


Lizzy has been doing well. She will be upset when she realizes that summer vacation starts next Friday. But....today she is happy. 


God Bless!




*AJBT I love you* There is a promise for those that hold on:-)

Wednesday, March 7, 2012

THE Word

What word? I hear it every day. I have friends and family that say it. So what is the big deal with the word retard? I honestly don't let it bother me too much. If I hear it, I usually tell Damon and he will say, "Did ya say something?" I have only said something about it twice. There is no way of "saying something" without making them feel bad. So most of the time I don't. It's a choice and I would prefer not to influence someone by making them feel bad. I'll let you make your own decisions without me getting involved.

Today is an important day for those of us living with or know someone with any kind of disability.



Do you want to STOP using the word retard? Do you feel bad when you say it? Click on the link to pledge not to (or try really hard) include it in your vocabulary anymore. There are many many other words to replace it. Here are some of my favorites:
  1. boogerface (my fav)
  2. blockhead
  3. heinie
  4. numbskull
  5. dumdum
  6. meathead
  7. goon
  8. dork
  9. nincompoop
  10. simpleton
There! Now you have some replacements!

Lizzy isn't a retard. Yes, she's mentally retarded but in the good way:-) 


God Bless.






Monday, February 27, 2012

My Miracle

I am not sure where the last month went but here I am in complete awe and amazement of how God has worked in the last month. Every time I talk about it my heart starts to race.

In my last post, I was writing about my desires to have Lizzy completely healed. I know that God can do this, but is this his plan? I often thought that God gave Lizzy to us as she is for a purpose. Lizzy is NOT, and anyone born with a disability, a result of bad karma. I have heard this a few times and has made me sad that people think this.

Anyone that has children needs a break from time to time. My mother in law usually takes Lizzy for me and gives me a full day of relief. I mean, I get to sleep in, enjoy time with Em and Jack, and be diaper free!! I need my breaks.  I  get time to re-cooperate. I think it makes me a better mom. I also take an anti anxiety/depressant to help me cope.

So this last month, I have been praying diligently for a miracle in Lizzy. Praying for healing in her brain, bones, joints, etc. Praying was the easy part. It was the waiting for something BIG to happen that was the hard part. Something big did happen and I didn't even realize it until last week.

Something strange, amazing, wonderful began to happen IN ME. I was more tolerant of Lizzy. I snuggled her more. Her dirty diapers weren't bothering me as much. Her wet bed didn't seem a burden for me anymore. Lifting her from the tub seemed easier. A whole month went by without a break from Lizzy......

......and I hadn't even realized it. Something happened in me. God granted me more compassion......more tolerance......more love for Lizzy. I had become somewhat irritated with Lizzy's life. I wanted her healing.........for me? I must have subconsciously wanted MY life to be easier. I can't believe this. As I write this, I am realizing what has happened while I would pray for my sweet Lizzy. For example,  I would pray that she would talk (her grunting and loud squealing would make my blood pressure go through the roof) and he gave me more compassion for her. I literally talk to her more when she grunts and screams as if we are conversing. This is crazy......NO,  this is crazy......

.....I ran out of my anxiety medicine......A MONTH AGO.







I will pray for you Lizzy. I will pray with a selfless heart.

God bless.

My favorite verse....John 11:40

Then Jesus said, "Did I not tell you that if you believed, you would see the glory of God?"





Saturday, January 7, 2012

Life Happened

I started to get reminders about the blog this week...from several people. I apologize and have lots to catch you up on.

My last post was right before Christmas. To be completely honest, this time of the year is brutally hard on Damon and I. In Lizzy's world, it's just another day. She has no concept of time of year, holidays, or special events. Literally, it breaks me every year. I want her to know that Jesus was born in a manger, I want her to help decorate the Christmas tree, I would love her to help me and Emily bake cookies, write her letter to Santa, or watch all the Christmas specials that I watched as a kid. It hurts every year and I can't understand why. It's not like this is a new thing for us. When we opened gift on Christmas morning, we had to put Lizzy back in her room because she was miserable. It was making all of us anxious. I feel bad about doing that, but I want a good experience for our other kids, and again she doesn't know anyway. I know that sounds harsh, but we felt it was best for everyone! Lizzy gets toys and new sneakers EVERY year, so no surprises there.

There was one gift that we got for Lizzy that is AMAZING. It has no buttons, no vibration, and no lights. If you have a toddler or a special needs child or adult ( Hi Betsy!) RUN to the nearest Toys r Us and get it. Seriously, the person that invented this needs to be promoted IMMEDIATELY!


This is the Fisher Price iPhone or iPod toy. It seals the device in and protects it from drool, drops, and damage! The plastic protector on the front still allows for playing games, surfing the internet, and whatever else you want it to do. I'm not sure you can make a call or receive one. Is this awesome or what?








Lizzy loves it! She listens to the Barney station on Pandora. Crazy, huh?

Lizzy is officially a middle schooler! It's about time really. She has spent 8 years in the elementary school so it was time to move on anyway. Since all the stuff happened before Christmas, relationships have been broken. Unfortunately, it was taken out on Lizzy because I was informed that she was given no good-bye card, hug, or TOLD good-bye by her teacher. Like I said before, it was just another end of the school day for Liz! Had Lizzy been more aware of what was going on, I would have addressed it.

Her new teacher seems really nice and our transition meeting went great. We were told that they had 5 interviews lined up for her new aide. So, I gave my list of criteria that the aide MUST have, without exception.

  1. Must be a woman (for changing her)
  2. Must be a mom or grandmother (for love)
  3. Must have upper strength (for lifting)
  4. Must have a heart for special needs kids (for compassion and patience)
  5. This woman will be mauled and drooled on everyday. Make sure she is okay with that (forwarned!)
You find a woman like that and we are golden! I was told they hired someone. I was also told that if it wasn't a good fit to just let them know, then she says, I am sure that you will! Perfect.

I would like to share one photo with you that I am proud of. Damon completed his Masters in August and received his diploma. I had it framed and gave it to him for Christmas. I'm so proud of him. Lizzy is pretty proud too, I'm sure! I love you babe.



Please pray for me as I make the transition (not Lizzy-she adjusts just fine) into middle school mentality. I'm just anxious. Damon just keeps assuring me that she will be fine. Yeah, I know, it's me having trouble. I don't like change...could you tell?

I pray that you had a beautiful Christmas with your families. 
Happy New Year!
God Bless!

LinkWithin

Related Posts Plugin for WordPress, Blogger...