Thursday, September 29, 2011

It's Ok, Really!

When Lizzy was a little girl, we would travel quite a bit with her. She had a third of the "gear" that she needs now. However, since we had the house built, we encourage family and friends to visit here because we don't like to take Lizzy on the road for too long. That being said, it had been about 9 years since my sister and her family physically saw Lizzy.  Only 2 of her 5 children had ever seen her. I was a bit worried how the kids would handle seeing her (being on the floor, grunting, etc)or attempting to interact with her.  I am constantly worried about this. I don't ever want anyone to feel uncomfortable around Lizzy.

It was as if they see her everyday. Comfortable. They were so excited to be here. It was beautiful! I want you to notice the little girl in the red tank top. This is our sweet niece, Eliana. She stood at the door of Lizzy's room watching for a bit. She had never met Lizzy. I don't think she even knows a child like Lizzy, so I am almost positive she was a bit scared. My sister says she is like a little mommy with her sister and brothers. But I wasn't surprised to see this reaction from her. I told my sister not to force it and to let everything happen naturally. She didn't want offend me but I assured her it was ok. Really. When she did warm up to her you can see what happened. She didn't take her eyes of Lizzy for a moment.

Lizzy loving her new birthday toy. Wyatt, 9, wanted to be around her the whole time.
Lizzy looking at her Uncle Joe who is always ready for the camera! He is the ONLY one ready!
Love how Wyatt and Eliana, 5, are touching Lizzy!
Lizzy is loving this! My sister is is holding Hannah, 2.


Eliana still can't take her eyes off her.





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

After we realized that Lizzy had special needs, the acceptance didn't come right away. It took me years to finally accept that I was living in this world of constant stares and whispers. A daily struggle of "why me and not her" type thinking. Endless hours researching her condition and falling deeper and deeper into depression. I would refer to Lizzy as developmentally delayed. That's it. It wasn't until I heard my in laws refer to Lizzy as "severely handicapped" did I realize what I had. This is how they would describe Lizzy to someone if asked about her. I was appalled......and thankful at the same time. At that moment, I realized something. It is what it is! Acceptance is hard.  Not just with what kind of handicap your loved one has, with anything. However, once I did acknowledge and accept that Lizzy had several handicaps which were pretty severe, I was able to cope with the day to day, move on, and really enjoy her. Like I did when she was a baby, before I even knew anything was wrong with her. Have you been able to accept what has been place in your life? If not, it might take time and that is totally ok, really! You can do this!

I have received lots of pictures and video of your beauties! This video will hopefully bring CP to the front row! The big question will be... ARE YOU AWARE? HOW AWARE? We can do this together!

**Lizzy also has a condition called microcephaly. Tomorrow is National Microcephaly Day! Wear yellow in support of Lizzy! Check this out.

God Bless!

Monday, September 26, 2011

A Happy Birthday

We did celebrate Lizzy's birthday. It was small and with just family. If we opened it up to friends, we would go broke feeding everyone. I swear she has more friends than I do. No she does not have a facebook page.......yet:-)

We celebrated Lizzy. We celebrate her life. A life we are so thankful for. So what do you get a 12 year old girl for her birthday? Make-up? Music CD's? Handbags? Clothes? Nah......not for this 12 year old! I usually hit the consignment shops for all the baby toys and wrap them in tissue paper. She loves both! This year, I sprang for brand new toys! It is getting harder to find toys for her because.....well........we have every baby toy ever made. Light up, vibrate, musical, you name it, we have had four of each. We have this one toy she has had since birth. It is a musical steering wheel that was white first but became purple a few years back. Her absolute favorite! It's dying. She drools all over it and that isn't good.

She had a white one when she was born that looked like this.



Then she had this one.


Pretty soon, she'll have none. I have searched EVERYWHERE! No luck. We are trying to replace this toy with similar ones. This SHELCORE DRIVING WHEEL TOY will be missed. I shamelessly put the picture and the name of the toy in your subconscious. Be on the lookout for it and let me know it you see it anywhere!

***Beep Beep Beep......let's go***

I am so excited to announce a new supporter! Wynnette Smith of Shirley's Sweets is an experienced and talented baker. I have personally experienced her cakes and will be calling her for every birthday, holiday, first days of seasons, last days of school, etc. Sorry folks, she is a local baker so if you don't live in the area, I feel very sorry that you won't be able to eat a slice of her cake. Check these out!


Emily, Paige, Lizzy, Jack, and Nate





Wynnette is a wonderful person and would love your business. She was first person I would see in the morning when Lizzy would go into school a few years ago. I would always hear "Good morning Lizzy". Lizzy knew who she was and would just squeal. 

Lizzy may not know that we celebrate her every year with cake and presents and we are all ok with that. God gave her to us and she is our gift that we celebrate everyday, every month, all the time.




Happy Birthday Lizzybug!




Friday, September 23, 2011

Supporters

I was feeding Lizzy this morning and while we were talking (we talk about everything in the morning from how her clothes are fitting to what she will eat for lunch), I was telling her about her blog and all her friends and family that read it. I was asking her what she thought about the current and upcoming sponsors. Like she was going to say something profound, right? I kid you not, I looked into her eyes and she told me something. Before I tell you, I have sweaty palms and feel like I have been reprimanded. Here it goes.......I saw disappointment. Her eyes were telling me that doing what everyone else does was not what this blog was for. Let me explain. I read other blogs and see companies advertisements plastered all over it. So being the follower (not really) that I am, I did just that! I started to think back to why I started her blog. It was never to generate income, I promise. It was to document Lizzy's life and promote more awareness to cerebral palsy. I feel like I have let Lizzy down in a way. I hope that I have not chased anyone away or disappointed you. I am sorry.


I have a great idea that would make my little girl proud of me. Instead of sponsors, we will have supporters!
You will love this. I want to bring for awareness and attention to cerebral palsy. This is how we can do that. Send me an email with your company and logo. I will review your website content. After I have approved your company all you have to do is link the image below to YOUR website or blog. I will then link your logo under SUPPORTERS. How does that sound? This is free and open to all businesses based upon my approval. Feel free to send product samples at anytime!


March is CP awareness month but I want to bring attention to it and celebrate it everyday!  Here is the image you will need to link us to your site. You can also find it under the the SUPPORTERS tab at the top!





God bless each of you today! I love this song. This song "Blessings" is for my new friend Betsy Brewer and her family. Finding the blessings in life may not always be easy for you. You are my inspiration.



Tuesday, September 20, 2011

Life Went On So We Moved On

I usually don't talk about what happened after we brought Lizzy home. The reason may be that I don't get to time to talk about it or maybe I don't want to remember it. Either way, I have time and reason now:-)

We brought Lizzy home thinking she was a normal baby. We were told that she needed to be on medicine to control her seizures. That's it. So she was on an anti-convulsant medicine that made her very lethargic. She would just stare at lights, had horrible acid reflux, and wouldn't smile for sometime.  I loved taking her out, it made me feel like a real momma. Holding her, rocking her, walking her, and having people fall all over her. Lizzy was a beautiful baby. C-section full term baby. Perfect. While she was staying at the children's hospital, she had every test known to man. One of those tests was an MRI of her brain. It came back normal. They wanted a follow up MRI a month later. No problem there. We scheduled a three month check up for her at the pediatrition. I was excited for these because I loved seeing how much she had grown. They did the normal checks....weight, height, head circumference, etc. Lizzy's pediatrition was a friend of ours and said everything looked good!

Almost a week later, I get a phone call at home from the neurologist at the children's hospital telling me that her brain is bleeding and that we need to get to the hospital in Columbia as soon as possible. He sounded very serious. I immediately began to cry and without any sensitivity the doctor asked me when I would be there. I gather some things for Lizzy and we drive to the high school where Damon is having basketball practice. I tell him about the phone call and we are immediately on the road for the next 45 minutes. We get to the hospital and we wait for an hour for a room. By this point, Damon was determined that Lizzy was fine and wasn't hurting.

We stayed in the hospital for two days. We were told that the some of her brain was missing, something was eating her brain (my personal favorite), and that she would be a vegetable the rest of her life. The pediatric neurosurgeon. So smart. So educated. Zero bedside manner. It was at this point, I was like....so I don't have a normal baby? 

Bottom line? Lizzy was put in the hospital under protective custody. They watched Damon and I with her all day. With the first hospital MRI, her brain was normal. No it wasn't. Her brain was swollen so it looked normal. By the time the follow up MRI took place, the swelling had gone down. However, when that happened, blood vessels were torn and bleeding occurred. This is where we looked like we had hurt Lizzy and the reason for protective custody. Horrible experience but it was then we knew that Lizzy has some needs. She would never be labeled with CP however.

Within a few months we were set up with occupational, vision, speech, and physical therapies. Lizzy was placed on medicaid. Her first opthamologist appointment was discouraging. We then knew why she loved the lights so much. Lizzy couldn't see and would be labeled legally blind.

Adjusting to this new way of life was a bit difficult. I felt different from every mom. I was beginning to wonder if this was going to be my life. I was teaching at the time and was talking after school one day to a friend of mine (teacher also), Debbie Sweat. She asked me if I ever thought of getting Lizzy's records from the hospital? I am so blessed that God placed her in my life at that time. So thankful! So I retrieved my records from the hospital. It took about 4 weeks.

I came home with the records and told Damon I wanted to contact an attorney. He immediately said no. We went back and forth for a few hours and told him I was doing it anyway. I had a feeling in the pit of my stomach and it was telling me to do it. So I called a local attorney, who connected us with a well known attorney that dealt with.........gulp........medical malpractice lawsuits. The next five years would prove to be the most challenging years of our marriage. Depositions, meetings, having another baby, caring for Lizzy, teaching, Damon getting his national board certification, and eventually me stepping away from teaching.  From the moment I made the phone call to the attorney, I KNEW I was doing the right thing. I just knew it.

About five months before we were to go to court for the trial, we received a letter from our attorney's office. Out of no where, they decided that Lizzy's condition was because of abuse and they are dropping our case! I was devastated. After reading the letter, Damon looked at me and said, "it's over Lis...... it's over." Over? I cried. How can we come all this way for nothing? For the second time in my life, I was angry with God.

I was so angry. I called that attorney and told them to depose everyone that EVER had contact with Lizzy. I told them that this isn't over and to keep working on it. I was THE  mother of Lizzy and it ain't over! Within the week they received a call back from an OB expert that shed some light on what he think happened.

In April 2005, we went to court to fight for Lizzy. We had jurors, witnesses, experts, a judge, everything that you see on television. It was real. It was scary. The jury took two hours to decide that abuse did not play a role in her condition and that the hospital and doctor were negligent.  It was a warm and sunny Thursday afternoon when we left the courthouse. We met some of the jurors crying and telling us that they were so sorry and wishing us the best.

The burden was lifted from us that day. We will be able to care for Lizzy and have her with us for the rest of her life. We would eventually have a house built with a wing just for her. She loves her ball pit so much and it's so therapeutic. It has 8,000 balls in it and entertains Lizzy for a period of time. Seeing Lizzy happy makes us happy.

So now you know. When and how did you realize Lizzy was a child with special needs? What prompted us to demand accountability with those involved in Lizzy's birth? We are an open book when it comes to Lizzy.

Remember when I said I was good with God? I am good with God because God is good.


God bless!

Sunday, September 18, 2011

Twelve

I remember it like it happened this morning. It was a morning similar to today. Crisp and cool. I remember Damon and I walking into the hospital around 7:00 am in silence because we didn't know what to expect. We decided to not find out the sex of our first born child because, as Damon put it, no one did that anymore. When I'm unfamiliar with anything, I become silent and just watch everything around me. Making a mental list of questions in my head to ask for later. It was Saturday, September 18, 1999. My due date was September 19. I was healthy and the doctor had no real concerns other than my severely swollen ankles. We called them cankles because we didn't know where my calves ended and my ankles began. I was checked in and given a beautiful hospital nightie:-) Up until this point, I had not felt one contraction or was dialated. I was being induced. I was able to get up and move around for a few hours while the medicine kicked in. When it did, I didn't want to move. I felt contractions and I never wanted to feel them again. If this was the rite of passage into motherhood, one kid was enough for me!

I remember all Saturday having contractions, nurses checking me, friends in and out of the room, football on the television (just because I was about to spew a baby from my loins didn't mean college football took the day off), and Mom and Dad settling in. I remember around 5:00 the contractions becoming so unbearable and my mother in law telling me to breathe between them. There was no break and they were one on top of the other. For some reason, I missed the chapter about that in my reading of every book known to man about giving birth! This was my first indication that either I was doing something wrong or something was going wrong naturally. Another indication was that they were adjusting the belt on my belly A LOT!  "Lost it again" was what they kept telling me. "It"? Uh....it...... as in the heartbeat?

Finally after a few hours of pain, Damon jumped the anesthesiologist as he walked passed the room. I received my pain medicine for good behavior and life was good. I was tired but remember my doctor and my family watching football and laughing at how content I was. I heard the doctor say, "she just had a really big contraction" and they all laughed.

It was getting late and nothing was happening. Damon and his parents were urged by my doctor to go home and get some rest. We would start again in the morning. This being our first time having a baby, we did what the doctor suggested.....everytime! So, they all went back to our house and I went back to sleep.

I woke up to a nurse doing something to my medication. I immediately asked her what she was doing and she was told by the doctor to stop the inducing medication. I went back to sleep. An hour later, she was back telling me that she was to stop the pain medicine too. I went back to sleep.

I woke up an hour later to the most intense pain I had ever felt. I rang for the nurse and through tears begged her for the pain medicine again. She told me to bite the bullet and understand that this is what childbirth was. I continued to cry and asked her to call my husband for me. I needed Damon. She took the phone and thumped it on my belly and told me to call him. I composed myself long enough to dial and lost it when I heard his voice.

Things just got worse when he got there. There was one other woman in the maternity ward and our room was directly across from the nurses station. We would ring the nurse and no one would come. Finally when they did, they would check me and say "nope...nothing yet." Profound. The doctor came in around 8:00 am Sunday morning and said that I needed to get to the operating room immediately. I remember them squeezing two bags of pain medicine into my epidural as fast as they could.

I remember the operating room being so cold and loud. The curtain went up and I was feeling my stomach being cut (insert Damon here....). I was looking at Damon looking at what was happening. Then I remember the doctor pulling the baby out saying "Lisa- it's a girl!" I will say this about my doctor. She was a wonderful doctor. Very personable. I loved her. Back to the story. A girl!!! I cried. I remember thinking, why is it so quiet all of a sudden in this room? Silence. No baby crying. No tools clanking. Nothing. I looked to Damon and he says they are working on her. I asked to see her and they held her up about 15 feet from me. Blue. Why is she so blue?

I woke up in a room with heated blankets on me. I look around and find a nurse writing in a chart. I assume it's mine and that she is my recovery nurse. I ask her where Lizzy is? She tells me she is in the nursery and that she will wheel me down there on the way to my recovery room. I am immediately wheeled to my room. No nursery visit to see Lizzy. She was born a little after 9:00 am. I continue to ask to see her ALL DAY! I was told everything EXCEPT what was going on. Around 7:00 that night, Damon and our pediatrician (friend) came into the room. Damon had been crying and shut the t.v. off.

"Lisa, we can't do anything more for Lizzy here." I felt like I was dreaming. I was confused and didn't understand what was happening. What can't you do? More importantly, what is going on? What they weren't telling me all day was that she repeatedly would stop breathing and was having seizures. My world stopped. The hospital chaplain came in and prayed with us. I had about a minute to gather my thoughts and realize that Lizzy was in serious trouble. The child that I carried for all these months may not even get a chance to touch her mother? I immediately became angry with God. Where the heck are you RIGHT NOW God?

Lizzy spent 13 days in the NICU (neonatal intensive care unit) in Columbia, SC. We stayed at the Ronald McDonald House there. Damon's parents were there with us and shared the heartache of watching Lizzy go from bad to worse to better. What a roller coaster!  I had a c-section and was released a day early because the doctor wanted to be sure I'd be able to see Lizzy in case she had too much trouble and............

Lizzy came home on anti-seizure medicine. Medicine that would try and control the shakes but couldn't. But....she came home!

I still cry remembering all the details. My heart aches for Lizzy on her birthday. She knows no different, but I do. We all do. I wish I could go back and speak up. I would have been mean. I would have chucked that phone at the wall. I would have................

God and I are good again:-) He gave me (us) Lizzy. He entrusted me (us) with Lizzy. He chose Damon and I to raise her.  He wanted our lives to be full of blessings. I am proud of our daughter and am amazed at the things she can do everyday.  She is a happy 12 year old with a sister and brother that love her. Her mom and dad have full hearts and know that having her means having a life filled with daily blessings.



Happy Birthday Lizzybug!

Tuesday, September 13, 2011

All Smiles

All better. Pity party officially over.




Thank you so much for your comments, emails, and even voicemail messages. I was feeling pretty guilty because we were supposed to take her back for oxygen therapy this month. But, I called Brian today at the clinic in Hilton Head and we are set to go in a few weeks! I can't tell you how excited I am. 

Thanks for reading.
God bless!





Sunday, September 11, 2011

Momma's Girl

My heart broke this morning when I heard her. It was a sound that I hadn't heard before but I knew what it was. I knew when I put my hand on that door knob what I would find when I opened her door. I ran to Lizzy begging her to snap out of it. I sang to her, pleaded with her, rubbed her back, put my hands through her messy hair, but knew it would take a minute. I scooped her up and rocked her telling her that she was momma's girl. "I love you, sweetheart."

As her body slowly stopped jerking and the grunting stopped, I cried. Lizzy cried. That nasty seizure lasted about a minute, but felt like an hour. "I'm sorry babygirl, momma's right here." I am not a superstitious person, but this morning, I felt like I had jinxed it. Telling several people it had been about four months since her last seizure. I was mad at myself. I decided that keeping her home from church would be best.  Usually, she is really tired after a grand-mal seizure and needs to just sleep. It took a lot out of her and it broke my heart.

We had a friend birthday party for Lizzy's sister, Emily, tonight. I overheard one of her friends say that he wasn't afraid of the girl on her hand and knees making animal noises. That hurt too. Pray for us tonight.


Goodnight. God Bless!

Saturday, September 10, 2011

The Lizzy

I just had to post this. You can see that Lizzy normally has...well.......somewhat tamed hair. This hair do is going to spread like wildfire....kind of like the Rachel, from Friends. So just ask your hair stylist to give you the Lizzy!




This one is a party in the FRONT and business in the BACK!

God Bless!

No.....Not Yet

Love our Lizzy. You already knew that. What you may not know is that I would rather her be about 40 pounds lighter. Lizzy is so healthy. We know several children that have cerebral palsy, older than Lizzy, and weigh a lot less than her. She is just more girl to get around. When she wants to be near you, it really means in your lap! Ya know, like she is a toddler! This "little" girl weighs almost 80 pounds and it is all dead weight. Really, no help at all. If I need to adjust her while in my lap, I literally have to lift her entire body. Heavy breathing, grunting, using every muscle in the body, and profusely sweating! I mean, the upper strength that I have would amaze you. Then there is the "holding Lizzy on my hip as if she were a year old" position. I know, what am I thinking, right? I don't even think about it anymore. She stands up and I lift her up onto my left hip and we go. She doesn't feel that heavy. But she is. I had a massage about a year ago and the woman told me to go see a chiropractor! C'mon....can't be that bad.

She will be twelve on 9/19. Those of you that personally know us remember how her birth went. I will post on her birthday with her birth story. Promise! You will know every detail of what happened. Her CP could have been prevented. Moving on.......

So she is getting older and I was changing her this morning and thought to myself.....Lisa you have some strong body odor (BO). Impossible! I just woke up and I smell like roses when I get up....ask Damon:-) I decided, just for fun, to pretend it was Lizzy. So I said to her, " Lizzy, after you go running, you have to shower and clean yourself." I giggled and sniffed her armpit! WHAT IN THE WORLD???? It was Lizzy! It was so stinky that I used a baby wipe to clean them. It was at this point, I began to realize that Lizzy's body is going through some changes that I wasn't ready for. She already "looks" like a teenager. Does she has to smell like one too? I'll just cover it up with baby lotion:-) PUBERTY WON'T DEFEAT ME! It probably will though because I stress out easily. Pray for me! I'm scared.

Just started doing this. She usually hates this "diaper changing" position.

She likes the window down while playing with this. The wind **smacks**the toy her in the face and she just giggles and does it over and over and over! How about her pacifier, huh? I still can't believe it stays in her mouth! It is a little one for babies:-)

I was teaching when this happened. Locate the music player at the bottom of your screen and pause the music. The video has music.



I remember wanting to leave school to get Lizzy and just hold her. I remember crying for those that lost their loved ones. I remember praying that I would see Lizzy grow up. I remember.

God Bless!

Wednesday, September 7, 2011

Brutal Honesty and Selfishness

First off, the fact that you are reading this right now makes me feel honored.  I have something to say and YOU want to hear (read) it. Truly humbled. Thank you. I apologize that this post is not all about Lizzy.

I got a phone call the other day from mom and she was crying. She was telling me about a Ukrainian couple that had just died in a car accident. I did know them. They came to my house. We had dinner with them. Talked and laughed. I could understand about every third word.  Played the wii and couldn't stop laughing. I remember thinking that the wii board had a weight limit on it. I didn't care. His name was Illusha and might have been the biggest guy I had seen in my life. His wife's name was Diana. She was a little, little woman. So you can imagine what they looked like together. Beautiful, beautiful husband and wife.

Their baby girl, Ester, survived the accident along with her Aunt Snezhana (Diana's sister) and cousin Karina (Diana's neice). I tell you their names so you can pray for them. That broke my heart in a million pieces. Why did God take them both and leave Ester? I got to thinking about my Lizzy. There is something that I have prayed for all these years and what I'm about to say is as honest as a person can get. For some, it may come off sounding selfish. Some may be hurt I pray for this. I pray that Lizzy and I go to Heaven at the same time. This may be part of my being so connected to Lizzy and wanting to protect her from ever being alone. I know she won't be alone in Heaven but I want to place her hand in the hand of Jesus. I know I have two other children that are strong and will navigate though life with no problems. Yea, I guess it's selfish for me to want this. I know. God knows the desires of my heart.

My Lizzy. 

Two warriors for Christ returned home on August 31, 2011. They will be missed because they were loved. Illusha and Diana. Please locate the music playing at the bottom of your screen and pause it. The video has music. 


Please contact me if you would like information on how to give to a memorial fund that has been set up for their daughter, Ester. 

God Bless!








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