Thursday, July 21, 2011

Ready

I'm ready. Ready to go home. Damon said to me today, "Do you realize that you've been home three full days in the last month"? I couldn't believe it. Yea, I'm ready to go home. I'm ready for my family to be a family again in Myrtle Beach on our Lizard Lane cul de sac (shout out). I am tired. Lizzy is ready too. But you wouldn't know it because she is so happy all the time.


She is just a happy happy girl. I am so proud of her. She has become more aware of what is going on around her, which makes feeding a little more challenging. All she does is look around. Trying hard to focus.

Not sure what she is doing here but she is LOOKING AT HER MOMMA!

Let's talk about her pacifier. Yes, she still has a paci. She can't go to sleep without it. She doesn't have a special blanket or stuffed animal that can soothe her like the paci can. She could be the oldest person to use a pacifier and that would be just fine with me! 


We leave tomorrow for a month. Back in September for 6 dives and then every month after that. I am so thankful that we have this opportunity with Lizzy. I may not post everyday so please either type in your email to follow the blog (near the top) or become a follower. This will provide you with an email or notification of when I do update the blog. 

Thank you all for joining us on the first leg of this journey and for being faithful readers everyday. We are so excited for what is to come and see what God has planned for us as Lizzy dives for healing!



God bless!

Wednesday, July 20, 2011

Contentment


Happy. My heart is full today. Lizzy was happy to have her family back! Damon says to me this afternoon...."you haven't stopped smiling today"! I was pretty happy too. Damon was not feeling well this morning so he stayed back for the first dive. Lizzy is so cool diving alone! 


Nice hair Lizzy. Your Nana is going to have a fit because it looks like that! I do baths at night and just don't brush her hair before bed. Nana does them in the morning and brushes her hair out for the day.  Looks like a mohawk! Sorry Liz! 

The second dive was with Emily. She could wait to get in there with Lizzy. Such a pro!




Love the symbolism in this photo. Touching. Love. Comforting.







Ironically, Emily picked the movie A Bug's Life to watch while diving. We have collected ladybug stuff for Lizzy since she was given an outfit from her Aunt Sharon (shout out) when she was a baby. It had ladybugs all over it. Since then, she has been "the bug" of our family. Our bug's life has taught us so much over the years. Our bug's life has touched so many. She is so loved, I know she is. You have made it known to us that you love her. 

Lizzy is trying so hard to get her eyes to focus that it looks kind of......ummmmmm.....



Let's move on.

We went to Wendy's and then to the local park tonight. My kids are so beautiful! When I have my camera they become impossible to photograph. But if someone else takes a photo, they become these perfect angels. Sometimes I get some good ones.



Oh Jack Jack!

What a beautiful park. There is one thing that is a bit strange and maybe someone can enlighten me here. They have THIS here. Free to swim and roam about. No fence or way to keep it in the lake!


They have signs posted. Do not feed the alligator! Really.......feed it what? Bread crumbs? Sticks? Children? Chicken? Pickles? I am not sure what it eats so my mind runs wild with it!

Back tomorrow? I'll be right here. God Bless!

Tuesday, July 19, 2011

What Is CP?

I am so in love with Hilton Head, SC. It's so beautiful and just awesome. I have been so impressed that I felt moved to write a letter to the editor of the local newspaper. I gave some background information and all the things that I was impressed with. I got an email back...Thanks for the email. What is CP?  Seriously? What else could I have been talking about? I was really hurt. Hurt for Lizzy. Then I stopped and thought a minute.

Not everyone knows. Some may not even know someone with a disability. My life is consumed with disability. Some may say that having a child with a disability"handicaps" a family. Preventing family vacations, going to church, etc. So this is why I was taken back. I thought without thinking! Do you know what CP is? 

Cerebral Palsy. Or the slang that is highly offensive "retard". Yes, my child is mentally retarded. Please remove retard from your vocabulary for Lizzy. It hurts to even write it. Cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination. YUCK! I hate being labeled fat! Can you imagine having that label?

We get stares. Lots of them. I used to just get so angry and stare at the person doing the staring! How stupid. I wasted so much energy being angry. Now I just smile. They're curious. Wouldn't you be? You are hearing some kid grunting in the aisle next to you. It's okay. Stare. Ask questions! Don't be afraid of these kids. They love being touched and snuggled just like any other child. Lizzy loves to wrestle. So they drool........oh my! I have had drool dribbled in my eye! I just say "that was gross" and move on. Trust me, if you know Lizzy, you know that she loves to hug. She will hug a strange if they say hi! I have never known a love like this before!

Wouldn't you want a slobbery kiss from this face?


We had a great day. I went to the local bike shop for a new tube. The stroller tire was going flat again and I didn't want to pay a dollar for air again. So I paid fourteen and some change for a tube. Lizzy went solo diving again. Cool!

Damon and the kids are on their way and I am so excited. I miss them and want them here with us! Please pray for traveling mercies for them. They should be here round midnight.

Thank you for being faithful readers. The emails, calls, and comments are so encouraging and we appreciate them. Damon wants to dive with Lizzy tomorrow. He is excited about it. See you tomorrow! 

God bless!

Monday, July 18, 2011

Big Day For A Control Freak

As a parent of a child with special needs, you feel the need to control everything. I'm positive that my family will agree with me when I say this. I have to control everything "Lizzy".  I'm not this way with Emily or Jack, just the bug. Having said that, the pharmacy still has not been able to get one of Lizzy's medicine.  I was absolutely livid about it. She must have her medicine to control her seizures. Well, almost two weeks later......you know what pharmacy?  I don't need it anymore (back in control).  You can keep it! Our hotel room door slammed so hard this morning that it almost threw me into a seizure. I turn and look at Lizzy and, yea, it scared her, but......NO SEIZURE!  Seizure free!!

During our first dive, I got to thinking. What if I let Lizzy dive herself? Could I really let go of that? Does she need someone in there with her? What if she cries? What if she reaches around for me and I'm not there, how can I get to her. I was praying for us. Could she actually do this? Could I handle this?


Yea, I'm eating those words right about now!








I've no words. I'm sad......she doesn't need her momma in that chamber with her. I'm proud........she can do this. You know what? I'm proud of me too! We did it! What a big girl!



I want to include a picture of the men that rule the clinic. Yes, I said rule! They rock. They're the nicest guys with the warmest hearts! They're perfect for this! Lizzy reached out for Dr. Pete and he just scooped her up. Yea, all 77 pounds of her! She just giggled. I'm so glad that we don't have to say good-bye forever on Friday. We'll be doing monthly trips for treatment!

Dr. Pete Stephens and Brian Church


I went to Bi-lo across the street from the hotel this afternoon. I had to pick up a few things and I knew that I wouldn't be long. I put Lizzy in her stroller and grabbed a basket. After putting two items in the basket, I realized that this was going to be harder than I thought and I was tired from our walk in the 97 degree weather. We walked on the path under the trees!  I realized something else. I needed help. If you know me, I don't ask for help. I walked up to the customer service counter and told them my dilemma. In seconds, I had a personal shopper!!!!  All because I asked for help! This person walked behind me up and down the aisles for the next fifteen minutes.  Can you believe that? It was busy so she took me to her register and then took the groceries to my van! Service! That just made my day.
***Moral of the story****   Ask for help when you need it!

My sweet sweet girl.







God Bless each of you! Happy Monday!


Sunday, July 17, 2011

Sunday Blues

This process is brutal. I am leaving with Lizzy this afternoon........alone. All by myself. Solo. Any sympathy at all? Have I portrayed myself as this independent, responsible, superwoman? Shoot.........then I have a confession.  I'm not. Crying like a 2 year old that just had his favorite toy taken away. I loved my husband more than ever for being here with the two kids. I weighed them before I left and again when I came home just to be sure they were fed! They were....no one lost weight. He took such good care of them. And I was kidding about weighing the kids.



Mom asked me a question last week that has made me really think. She ask me if I ever, in a million years, thought when I was younger if I would be the woman, wife, mom, that I am today. The answer is NO! Many of you may not know me very well, but I grew up in a home that........let's say this........our home is completely different and our children are raised differently too. I was confused about everything when I left Ransomville, NY (shout out!) So glad I met Damon and his family. Did I ever think that I would have a child like Lizzy. NEVER! The thought never crossed my mind. When I taught, I would go across the hall into the PMD (profoundly mentally disabled) and talk to the teachers. I would try NOT to interact with the kids. I was terrified of them. Well, when one of them walked up to me and bit my arm, I never went back into that classroom. That fall I had Lizzy.

I can't express how grateful I am that God gave me Lizzy. We all learn from our kids as parents. Three of the biggest things we have learned as a family is patience, tolerance, and compassion.


My 20 year class reunion was this weekend in Wilson, NY (shout out!) and I was sad to miss it. I am so proud of the person that I have become. It would have been nice to see everyone but I would miss them all to be doing this with my Lizzy. I am so proud of her for being able to tolerate all trips to the clinic, different places, the chamber, all of it. Her neurologist reads this and he might have something to say about this.......but......we are beginning the "weaning of the seizure meds" this week. Honestly, the pharmacy can't seem to get the meds and she still has had no seizures. YES.....she has been seizure free for some time now. Well, since we started the treatments. What we have been seeing is her reaction to being startled!  Could this be? Our Lizzygirl has been having seizures for 11.5 years!!!!!!!!!!!! Yea, get excited! 

I am sorry about the way the previous post came out. It might have been hard to read. I will be back tonight with an update on how the drive goes. Lizzy isn't great for conversation.......hahah...you know being non-verbal and all. I still talk to her and ask her questions just because.

THANK YOU FOR THE WATERMELON.......who ever left the yummy watermelon a couple of weeks ago at our doorstep....that was AWESOME. Do it again:-)

God bless!




Friday, July 15, 2011

Little Blessings

We are home. Home is where Lizzy is happiest. So the motto of the house is......if Lizzy's happy, we're all happy. We missed our family this week. This is the longest Damon and I have spent away from each other and it about broke my heart! But, this isn't about me, right?


Last night. Last night was unusual. Lizzy went to bed around 8:00 and we turned on the bathroom light and closed the door so just a sliver of light was coming through. Around 10:00 I decided that it was time that I go lay down with her. Yes, she was still up! So I go in and lay down with her. I turned her over on her back and rubbed her head for some time until she was mellow enough for me to leave the room.  I shut the bathroom light off and leave the room. I go back in around 11:00 and find her asleep.........ON HER BACK with her legs stretched out. Man, is she long. I cover her up and she turns over on her knees and goes back to sleep. THIS is kind of a big deal here. She must have been so stimulated that she couldn't sleep and with the light on, and her vision improving, she was looking around at all the new things around her. She found the black phone and pushed all kinds of buttons before I could get it from her.  Lizzy sleeps (or slept) on her knees up to her chest EVERY night for 11.5 years.  I am excited.

My favorite verse.
Then Jesus said, "Did I not tell you that if you believed, you would see the glory of God?"  
John 11:40


I believe. Little blessings. I believe.


*************
Mom was cleared to dive again. So she did and all was good. While she and Lizzy were in the last dive today, I went to get our lunch and some gas. I was on the phone with Damon when I pulled into the parking space at Dollar General (sodas for a buck). I hear this tap tap on my window. Two ladies needed a jump and so I tell Damon I was going to help and he says "do you know what you are doing"? Ummm.....turns out, I didn't even know where to pop the hood button was. I was completely useless when it came to helping these women out. We had small talk. They asked where I was from. I told them why we were in Hilton Head and turns out one of the ladies has heard of the clinic and has seen their advertisements. She also knows a child with Asperger's syndrome. I love when these little connections happen. Maybe oxygen therapy will benefit this child. 




Ok, so let me tell you about the woman in the photo. You can just call her superwoman. She did everything. Hooked the cabled up, popped the hood and saved the day! I am embarrassed to say that I didn't get either of their names. She laughed a bit when I took the picture. I told her that I was keeping a blog while we are getting treatments and she asked for the blog link. So maybe, just maybe, I will get their names after all.


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


We found another toy that Lizzy likes. We went to Marshall's last night and found this.







It's a huge magnifying glass. I think she can see things better with it. It was a $5.00 steal. I bet they thought they would never sell something dumb like that! GOLD! It makes our heads bigger than our body. We love it and it makes us giggle like kids playing duck duck goose!


So happy to be home. We have decided that we will continue with treatments once a month. Lizzy will complete 6 dives a month, every month! So.....the blog will continue through Lizzy's journey though HBOT! 


I want to share something that my cousin, Stephanie who was my very best friend in high school, wrote last night. I tried reading it to my mother in law (aka Thelma) and I couldn't because I was crying so hard.


So.....grab some tissues.


My Trip Down Memory Lane



I remember when it all started. Your Mom sent a letter with beautiful pictures of her when she was pregnant with you, walking to get her excercise and be healthy. She updated us with how she was feeling and how the pregnancy was going. She and Daddy were excited!

I remember getting the news of your birth, and the complications of what happened and that your tiny, little, beautiful body was having such uncontrolable seizures they had to put you on some really heavy meds. My family and I cried, broken hearts, we wished we were closer to lend a hand. We prayed you would pull through.

We got to meet you for the first time when Mom and Dad brought you to NY for a visit. How adorable you were!! My Mom (your Aunt Patty) hung up a swing from her front yard tree and we put you in it. You loved it!! I will never forget how you tilted your little face upward toward the sun and laughed. We took pictures, we loved you up!!

We enjoyed our visit, your Daddy was so gentle and loving with you and Mommy was so happy and proud. She showed us her first scrapbooking page, which was of you and your Daddy. First Father's day. It was beautiful! I think you got him a weed whacker for his gift! hahaha That visit ment so much to us!



I have made my career helping people who have disabilities. I have been doing it for 13 years now. I feel a special kinship with you in my heart. I know life is not easy for you. When Mom comes up to NY to visit us, we always find out how you are. I love catching up on Facebook and through your Mom's blogs. I love seeing your pictures and learning how you and your sister and brother are doing. Mom and Dad are doing such an AWESOME job for you. They are tremendous parents and love you so much. I remember one visit I had with your Mom, Daddy was texting how you were doing and sent her a picture of you napping. I thought it was so sweet. Your Mom was missing you, and Daddy was right there to make her feel better! Such a simple thing, but yet it showed even the simple things mean everything!! I am a faithful follower to your blog, I have not missed one entry! I cry everytime, tears of happiness, tears of understanding, and tears of hope. Sweet Lizzygirl thank you for touching our family, our hearts and minds! I pray you receive some healing, and I promise you this, when we both get to heaven, I will take your hands and we will run, dance, sing and laugh, then we will do it all again!!




Told ya!





Thursday, July 14, 2011

Random

Well, it happened. Mom and I had a fight this morning. We had to check out of one room and move to another. Here is how the heated conversation went.

Mom: Lisa, I will pack the room up while you and Lizzy dive this morning. 
Lisa: no.
Mom: well, why not. I can do it.
Lisa: because, I am not going to let my mother in law pack up the entire room without my help.
Mom: When did I become your mother in law, I've been Thelma all week!

I about died on the floor laughing. Later, mom explained herself. See, Thelma and Louise were partners.....in crime. But partners, nonetheless. Mom has been great. Helped with the feedings, changing diapers, bathing, getting Lizzy in and out of the van, weight watchers partner, and some dives. So I understood her "Thelma" comment. 

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

We met a family yesterday morning while eating breakfast. They approached us quietly (which I understood why within minutes). They lost their 19 year old daughter in April. Her name was Rebecca. Rebecca had Retts syndrome and died from complications of having it. She was non verbal, visually disabled, had seizures, and basically was cared for 24/7. They approached us quietly as not to scare Lizzy. You could see in their eyes, they understood everything.

I thought about this family most of the day. I was sad for them to have lost their child but  was happy that they had almost 20 years with her. Lizzy has a diagnosis of microcephaly. Most of the research says that people with it have a shorter life span. Having been on internet support groups, I did not find too many kids over 10 years old and it scared me. I want more time with Lizzy. She is becoming a different girl than she was three weeks ago. She focuses more, babbles more, walks upright more, and just seems like she is loving life right now.

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

Thanks to a friend who bought this for her special needs son, I found Lizzy's new favorite toy! It is the LeapFrog music wand.


We will finish out the week with dives 29 and 30 tomorrow and go back to the beach. I love having mom here with me, but I do miss my awesome husband and kids. I respect anyone who spends long periods of time away from their spouse. I think Lizzy is more aware of where she is. She growls every time we come back into the hotel room. Right now, she is in her bed talking and grunting. When I say talking, I mean babbling.

If you needs a clean place to stay while in Hilton Head. You really should stay at this Hampton Inn. It has a wonderful breakfast every morning. The staff is so friendly and helpful. The beds are the most comfortable for a hotel and it is reasonably priced. It has been a wonderful place to stay. 

I have enjoyed your prayers for Lizzy and each one has been read. I will print them as soon as I get home. I hope you will be willing to do me another favor. I understand some of you may not be able to do this and I apologize. If Lizzy has touched you in some way or you have a personal memory of Lizzy, could you share it with us? I would love to use them in a future blog post. I would appreciate that and thanks!

Thank you for reading our little blog that has crept up to over 2,000 visitors. I have a friend (Amy:-}) reading in Ireland! We went international, folks! 

Oh...and mom and I are friends again:-)



 God bless. Have a great night!



Wednesday, July 13, 2011

A Note From Nana

Dear Liz,

Mom asked me to write in her blog today while you are in the chamber.  I think she is trying to help  me feel better about not being in there with you!  And she had the nerve to call me a "chamber hog"!  Man, I thought things were going pretty well, too.  I had prayed hard before coming here because I really was a scaredy cat about being cooped up.  Some people call it claustrophobia.  Whatever it is, I have it.  But after six dives, I felt like I was doing okay.  I could still make you laugh and though I never felt totally at ease, it was okay and I was happy to help out.  Then yesterday. . . wow, did that hurt.  I felt like you had hit me with a baseball bat!  I hope you didn't see me crying.  Two doctors looked in my ear and both said I was grounded!  Apparently, I broke some blood vessels in my ear.  They said it wasn't perforated but I could do lots of damage if I continued to dive.  Maybe later!.

Sorry about being such a baby, Liz!  I think back on so many times in your life when you have had to go through so many uncomfortable situations!  What a trouper you have been.  Even at birth you struggled so.  But you were determined to stay here and be a part of the family you had chosen while in heaven!  I remember standing by your incubator in the hospital.  The doctor asked me to watch the dials and when they dropped to a certain number, I was to rub your little back and talk to you.  Wow, did I ever do some praying that day.  I sang to you, touched your little body, and prayed for you.  I know even then there were angels all around.  You had to spend the next several days in Columbia.  Your daddy and papa were there with you until Mom and I could join you.


I remember your seizures and how scared we were.  How about the time you were transported to MUSC by helicopter. You were so little.  How frightening the next few days were.

But in every situation, God has been there with us.  I know you have special angels who are assigned just to you.  I see you looking at them and laughing at them.  Someday maybe you can tell us about them.  I don't want you to ever forget.  The knowledge that they are there and that they help you get through tough times brings us comfort.

Mom told me this was not to be a depressing entry so let me remind you of some of the really great times.  I remember when you learned to walk!  You were 6 years old.  I got a text from Mom saying, "She is walking!"  I was so excited I drove immediately to your school.  You and I walked down that hallway!  I was so proud of you.


I remember putting up wall paper in your room at Sumter.  Cute little teddy bears, I believe.  Dad didn't want anything too babyish nor too pink.  I think secretly he wanted that boy pretty soon so he made us paint part of it blue.


You've spent lots of time at our house creating such good memories.  We have gone to restaurants, church, the mall, amusement parks, and anywhere else we felt like going.  You love to be around people.  Papa always says you love different voices and sounds.  We take you proudly.  We love to be a part of your experiences.  I have tried to "Lizzy-proof" the house but I don't think it is possible.  As you have destroyed plants, books, lamps, fans and about everything else, I just look at you, laugh, and start taking pictures.  You have a great memory and the next visit you  just go right back to the last destructive site you had.  We love it! Wait till your parents get the bill!

Oh the love that you give.  Sometimes my neck aches from the hugs!  You clasp those fingers tightly and squeeze my neck.  There is nothing like those hugs.  And your laugh. . . it is so contagious!  I'm not sure which of us really gets it going, but I love to hear you laugh as much as you love to hear me.  Sometimes you fake a laugh just to get me going.  You know how much I love our little game.


Anybody who says you don't communicate your feelings easily has never been in the car with you during the first 30 seconds when your music isn't in the CD player.  Oh, and if you don't particularly like a certain song?. . . how fast you can make those ideas known.  How about eating?  Ok, so maybe you aren't too crazy about some of the concoctions I come up with. . .you could be a little more subtle!

And how you love to be with your Papa!  You have spent endless time on the swing in the back yard.  How many times he has told you about the birds, the trees, the rabbits, squirrels, and anything else he can ramble about.  I can't get two words out of him sometimes, but you can make him go on forever about nothing!  No matter how tired he is when he comes home from working or playing golf, when he sees you he completely lights up and greets you with such enthusiasm.  Oh, it is mutual.  You start looking for him the minute you come into the house.


Well, Lizzy I think Mom put a word limit on this entry and I think I probably have exceeded it.  You know how much I love you.  I began praying a year ago for a miracle for you.  I am still excited to see what God has in His mind for you.  Wow!

Love, Nana

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