Clowning Around

Here we are a week and a half into school and back into the swing of things.  I have volunteered in Georgia's classroom once and Lana's just today.  I love to go volunteer in the class because it gives me insight as to how my kids are at school.  Mostly they act as I would expect.  Georgia, however, did surprise me a bit last week.  

Last year I volunteered in Lana's class every other week.  Despite the problems I have with her at home from time to time, she is great at school.  She listens, follows directions and plays well with others. Sonya has always been this way too.  They have been model students.  I suppose I just thought Georgia would behave accordingly.  

Now it's not that she didn't or was "bad" in any way.  It's just that...well...I think we may have a class clown on our hands.  It's not completely surprising.  It's the way she's always acted at home.  Trying to be goofy and make everyone laugh.  She is her father's daughter.  So I don't know why I was a little surprised last Friday when she was being silly with a friend sitting next to her, instead of doing her work.  Then when they went to sit on the rug to listen to the teacher's lesson, instead of facing the front and paying attention to the screen the teacher was pointing to, she was completely turned around to the back of the room paying attention to what, I don't know.  I tried to discreetly get her to turn around, but she wasn't even looking in my direction.  Now, in her defense, she wasn't the only one having a hard time sitting still.  It was the end of the first week of school for these five year olds, and they are still trying to get the hang of this paying attention for more than ten minutes thing.  But still, this is not anything I have ever seen from my other two.  

When I talked to Andy later on in the day he asked how Georgia was at school. I mentioned how she was a little goofy with the other kids and how I thought that perhaps she might end up becoming a class clown.  

"Really?"  He asked.  "Oh I like that!"  

"It is kinda funny," I admitted.  

"Ooohh...except that means she might get in trouble though," he realized.  

Yup.  

Well, not yet but just wait, my friends.  I have a feeling there may be some good stories coming from her this year.    

A Sad Diagnosis

Last week I wrote a post about a woman who had recovered from Mesothelioma.  I mentioned in that post that there was something heartbreaking going on in my own family.  Yesterday, the news my sister Beth was dreading was confirmed.  Her youngest son Ben has Duchenne Muscular Dystrophy.  Let me start from the beginning and I will do my best to get through this without crying ten times.

Benjamin is three years old.  He is the sweetest, loving, most adorable little boy.  However, he has always been delayed in his motor skills.  My sister noticed it even when he was a baby and took a while to hold his head up.  At the time she thought it was just because of his big head.  Because the boy does have a big head.  A trait that my little sister Megan can tell you runs in our family, because she has the same noggin.  However, he took a while to crawl and walk.  I told her not to worry.   Remember, none of my girls walked until 18 months and he is the youngest, so what does he have to walk for?  He has a sister and brother to bring him whatever he desires.  When he wasn't showing any signs of walking by 17 months, Beth decided to get him assessed to try and get physical therapy for him.  

At the time he was diagnosed as having low tone.  That basically means it's a bit more difficult to activate the muscles and you have to work  harder.  Lana went through the same thing with physical therapy when she was a baby.  They were approved for state services and Ben received therapy to get him moving.  It wasn't until 22 months, but eventually he did walk.  

My sister was relieved, but it was short lived.  His speech wasn't where it should be and even though he was walking he didn't seem to be progressing to running, jumping, or climbing stairs.  She did get speech therapy for him as well, which has helped tremendously.  Still no running or jumping though.  Then when he turned three, the free services ended.  As far as the state was concerned he was walking and talking so that was good enough.  Beth knew something was off though and wanted him to continue getting the therapy he obviously needed to improve movement.  

At his three year old check up in July her pediatrician referred her to a neurologist to get him a more formal "low tone" diagnosis so he could again receive services.  My sister had no idea how her life would be turned upside down when she walked into that doctor's office.

The neurologist examined Ben and asked him to get up from the floor from laying down position.  When he did get up he used something they call a "Gower Manuver".  It basically looks like walking your hands up from a Downward Dog position in Yoga.  This is a classic sign of MD.  The neurologist immediately ordered a blood test and started talking to my sister about possible diagnosis, but didn't confirm anything.  He wanted to wait for the blood test before there was any further discussion.  

The blood test was to test Ben's CPK levels.  These levels in unaffected children will be under 300.  Ben's came back at 12,000.  By this point my sister had been on the Internet plugging in his symptoms and had all but diagnosed him with Muscular Dystrophy.  Of course going on the Internet to find out what's wrong with you is never a good idea.  I have a pain in my back that comes and goes, and according to Web MD it's either a pulled muscle or ligament or a tumor.  So you know.  I either need to stretch more or make out my will.  Not always a good idea to research those things.  Unfortunately, this time she was right about when she found.  

After his blood test came back, they were sent to have genetic testing done.  This will completely confirm the diagnosis.  However, genetic testing takes 4-6 weeks and my sister was losing her mind.  So she made an appointment with the Muscular Dystrophy clinic near them in Virginia, to have doctors who were experts in this subject examine Ben.  

That appointment was yesterday and even though my sister went in there praying for a miracle, she did not get one.  The doctors confirmed what she already knew and what the genetic testing will prove for sure in a month.  Little Benjamin has Duchenne Muscular Dystrophy.  

I'm sure none of you know what this is really.  Why would you?  We didn't know what it was.  To me, MD was a disease where kids were in wheelchairs and once a year Jerry Lewis did a telethon to help raise money for them.  I never paid attention it.  Why would I?  We don't see things like that until it happens in our own backyard.  Then we sit up and pay attention.  I'm paying attention now.  Here's what I know.  It is a fatal genetic disorder.  Boys with this disorder experience progressive muscle weakness.  When they reach about 8-12 they will lose the use of their legs and be in a wheelchair.  During the teen years, the arms will lose function and since the heart and lungs are muscles, they will eventually give out.  As of now men with Duchenne do not live past 25-30.  (Here is a video that explains it in more detail if you're interested.)

That is the part where I lose it.  Not live past 25-30.  Look, I know none of us are ever guaranteed another day here on this planet, for ourselves or our kids.  However to KNOW your kid won't make it past 30?  There are just no words.  The pain I feel for my sister is overwhelming at times, so I can't even imagine what she must be feeling.  This just plain sucks and it's not fair.  It's been really difficult the past couple weeks talking to her about this and trying to help her come to terms with it.  I still don't think she has fully done that yet.  Although, yesterday she did post about it on Facebook to let people know what they are facing and to eventually ask for donations to the cause, so she is taking steps toward acceptance.  I know if it was me I would be in denial for a while.   I hadn't said anything on here as well until we knew for sure, but part of the reason for me telling you this story is to ask all of you out there to help out.  

Next weekend is the MDA telethon.  They are going to broadcast it on ABC Sunday night at 9pm.  Please turn it on and call in to donate.   Even if it's $5, ANY amount will help.  My hope is that even though there isn't a cure for this now, perhaps with more research, they can find one or at the very least a better treatment.  One that will keep Ben moving and alive longer.  That is the hope that we have to hold on to for now.  The hope that with donations and science, progress can be made.  Years ago being diagnosed with HIV was a death sentence.  Now people are living 20, 30 years with HIV and not developing AIDS thanks to the research and drugs available.  

However, even though we should always hope for something better, my sister has to deal with her reality of the situation now.  Her family is facing a life long struggle with this.  Even if you don't have the money to donate, please say a little prayer or send good vibes out into the Universe for her family.  They need all the positive energy and good will they can get right now.  

Earlier this week, Sonya came home from school with a quote she has to memorize by Friday.  It fits this situation so well, I felt like someone was sending us a message.

"You never know how strong you are, until being strong is the only choice you have."- Bob Marely  

My family has to be stronger than ever for my sister and each other.  I will do whatever I can to help this little guy out,  because for some reason these diseases always affect the sweetest, most loving kids. Which is exactly who Ben is.  

Back To School

Oh hi there!  Yes, once again, I have been a bit lazy with the writing.  Sorry.  I was trying to squeeze everything into the last week of summer vacation.  But here I am again!  Back to a schedule, back to reality, back to school!  Yes, yesterday was the day I have been longing for/dreading for five years now.  The day I send ALL my girls to school.  Including my baby, Georgia.  

I know what you all are waiting to hear-how much did I cry.  Well, as it turned out not that much the day of.  This was for a few reasons.  The first is that of my three girls, Georgia was by far the most nervous and apprehensive about going to school.  I'm not sure why this was.  Perhaps because she's the youngest.  Or perhaps I said too many times how much I was going to miss her when she went to kindergarten.  Oops.  Therefore, I couldn't really break down in front of her, since she was already having a hard time herself.  It was a crazy morning anyway, so I didn't really have time to think about it to much until she was sitting on the rug in her kindergarten class with a look that said, "I really don't think I want to stay here".  I swallowed the lump in my throat, put my big girl pants on, and assured her that she was going to have a fantastic time.  She already knew the room, since it was the same one Lana was in last year, and she already knew a couple kids in her class, thanks to pre-school and mommy and me.  She nodded her head and tried her best to be brave.  Then I hightailed it out of there before I completely broke down.  

After we left I had a small teary moment, but I didn't feel I could completely lose it, because I was in charge of the Boo-hoo/woo-hoo breakfast we hold in the library for all kinder parents.  It is something I started the year after Sonya started school.  It's a way for the kindergarten parents to know they're not alone for feeling sad, or in some cases happy, about their little ones going off to school.  And it's a way for the PTA members to chat up some new blood!  Since I was the one putting it together, I didn't feel coming in hysterically crying would be the best idea.  Even if I was also a kindergarten parent.  

When the breakfast was over, I went home and my friend Carey met me there with a bottle of champagne.  But it was totally okay for us to drink it at 9:30 in the morning, because we mixed it with orange juice.  Mimosas do not count as drinking to early because they have OJ!  Everyone knows that!  She helped me drown my sadness in a couple mimosas and some girl gossip. (Thank you again Carey!)  We had a great time and will probably make it a yearly tradition.  Although next year I think I need to eat more for breakfast.  In all my craziness of the morning, I didn't eat quite enough and two mimosas did me in quickly.  Let's just say I had to walk to pick up Georgia at 11:30.  

Probably the biggest reason why I didn't cry to much yesterday though, was because I was kinda cried out about it from the night before.  My mom sent me a lovely email, which every time I read it now I cry again.  So thanks for that mom!  I hope she doesn't mind but I wanted to share it with you all.  It applies mostly to me, but also for others of you out there sending your last (or even your first) baby off to school.  Hold on tightly to those baby/toddler years.  They go by more quickly than I would have liked, even though at the time they seemed to be taking forever.  They weren't.  I really can't believe I'm at this point in my life.  It seemed like such a far off destination three even two years ago, yet here I am.  
Thank you mom for sending this to me and for always being there when I needed to vent about being sick of having babies/toddlers.  I didn't really believe you when you said how fast it would go, but I believe you now.  Now I will hold on tightly to every moment I have with them until my knuckles are white.  Even the moments when I want to tear my hair out.  Thank you for being such an inspiration.  I love you.  

Dear Kristi,

                Whether you are reading this tonight or tomorrow, I wanted you to know that my thoughts are with you as you send your baby off to school. I know that you will meet this day with mixed emotions.  when you were up to your hips in diapers this was a day you could not see in your future and now it is your present. I reminded you many times to enjoy each day because they would pass quickly, and so they have. I am very proud of the mommy that you are . I am awed by the job you have done.  You have worked hard raising the girls to this point but fear not, your job is faaarrrrr from over! Tomorrow when you return home to an empty house take the opportunity to “Poop in Peace.” I have a feeling it will be bittersweet,” Pooping In Peace … at last, sigh, sniffle”.  I still remember the day I sent Megan off to Kindergarten.  Thankfully she lightened the mood by taking herself to the bus stop (in front of our house) 3 hours before the bus for afternoon K came, because she was convinced that I was going to make her miss the bus since you and Beth were long gone. I love you with all of my heart and I will feel each tear, that you shed tomorrow, in my heart. After all I am still your mommy and my job never ends, nor does my love for you. Can’t wait to hear your first day stories. I bet I’ll have a few of my ownJ I love you.

                                                                                Mom

4th grader

1st grader

Kindergartener!

My three adorable school age girls.  Goodbye baby/toddler/preschoolers. :(

"Can I leave yet?"
She might have been a wee bit nervous.  This was the best "smile" I could get.

Just a quick footnote-I did indeed get to "poop in peace" yesterday, probably for the first time in 8 1/2 years.  Good luck to the rest of you about to send your babies off to school for the year.  For those of you still at home with wee ones, you will be here before you know it.  I promise.  

Everyone Is A Critic

While my mom was here a couple weeks ago, she made breakfast for the girls just about every morning.  It's so great when she's here, because she's such a huge help and I get a bit of a break from the monotony for a while.  Thanks mom!  Anyway- one morning she made a "Toad in the Hole" for Sonya.  I'm sure most of you know what it is and just have a different name for it.  You take a piece of bread, cut a hole in the center, butter it then put it in a frying pan.  Then you break an egg in the center of the hole and cook both sides.  It's a great breakfast, easy and the girls have been requesting it quite often.  

Here's the problem with cooking eggs though, it is so hard for me to get them right.  The girls want the yolk "dippy", but getting it to that perfect point of just runny, not hard and overcooked and not undercooked and gross is never easy.  At least for me.  The other morning, I had apparently not cooked them correctly as the girls started to tell me as they were eating.

"Oh this one doesn't have much runny yolk," Sonya said.

"I'm sorry.  Is the whole thing cooked?" I asked.

"No some if it's fine, but it's just not right.  It's not how Nona cooked it," she told me.

Mmmmooooooommmm!  You need to come back!  

"Well, I'm sorry girls, I can't get it right all the time," I told them.

Then Sonya said to me, "No, no-I mean I'll eat it.  If we were at a restaurant and you were the waitress, I would tell you it was fine."

But since I'm just mom and I'm here to serve you, you will tell me how I messed up your breakfast.  Thanks girls!  Sometimes constructive criticism sucks.  Especially when it comes from your kids.  

Never Give Up Hope

While I was on vacation a few weeks back, I was contacted by a woman who asked if I could help her out by posting a video here on my blog.  She sent me a link and told me a little about what the video was about.  When her daughter was just 3 1/2 months old the woman who had contacted me, Heather, was diagnosed with mesothelioma.  It is a form of cancer that usually kills people within two years.  I can't even imagine how that would feel to realize I might not get to see my girls grow up.  In fact, it's one of my biggest fears.  

When she asked if I would share this video with my readers to get her message out to people, I said definitely, for a couple of reasons.  First of all she is here seven years later watching her lovely daughter grow into a little girl and she is cancer free.  This just proves you can beat the odds and to never give up hope.

I have a close friend who I met when our kids were just babies.  Right before I met her, doctors had just discovered a tumor in her brain.  She had just recently had surgery to see if they could remove the tumor.  They could not.  She was going through a tough time not knowing if she would watch her baby grow up.  Although the tumor is still in her brain, it is benign and hasn't grown in several years.  She has had the chance to watch her son grow into a boy and continues to live life to the fullest everyday.  

That is why when Heather reached out to me, I felt somewhat of a connection to her and her story.  I know what my friend has gone through over the years and how hard it has been for her.  She is always more than a little nervous whenever she gets her bi-yearly MRIs, but so far so good.  

It's been a while that I've been sitting on this story and this video and I just haven't had a chance to write about it or post it yet.  I guess I was kind of searching for the right time.  A couple weeks ago, Andy's cousin lost his 13 year old daughter to cancer.  I didn't know the little girl, but I can only imagine what heartbreak and loss the family is feeling.  So I decided last week it was time for me to post this in honor of the little girl that Andy's cousin lost.  I wish they would have had a better and more hopeful outcome like Heather.  

Finally, I am posting this today, because my family recently received some news that is....to say not good is not even covering it.  Heartbreaking would be correct.  It is something I'm not ready to talk about quite yet, because I don't know that my family member who this effects is ready to talk about it yet themselves.  I can tell you it's not about me, Andy or the girls.  However, I have spent the last day crying on and off anyway, because the people it does effect are incredibly close and important to me and I hope they know how much I love them.  Even though, what we are dealing with is different than what Heather dealt with, the message is the same.  It is one of hope.  Just because some signs point to all things bad doesn't mean there aren't a couple pointing to one of good.  One is all you need, because you never know what can happen.  So I am sending all hope I have to the people I love.  Heather thought she wasn't going to be there to see her daughter turn one, let alone seven, but as long as there is a glimmer of hope and a spark of love, all good things can happen.  That is what I'm banking on for my family.  

Thank you  Heather for sending this to me to post.  I had no idea when I watched this a couple months ago, how much it would eventually hit home for me.  Funny how life works like that.  

Click here for the link to Heather's video.

SO Close!

Level 2-Pass

It took three summers to get Sonya out of Level 1 swim class and 2 weeks to pass Level 2.  I've documented the girls learning to  swim adventures on here every summer.   I guess not being petrified about the water anymore helps you to swim better.  This picture was from a couple weeks ago.  Yesterday was her last Level 3 class and she didn't pass it yet, but she only has two things she needs to work on.  By next summer she could be headed to lifeguard material.  I'm so proud of her!

The little girls...well they will be in level one yet again next summer. BUT!  I think they will get through it fast though, because they only had two things to work on and they are actually swimming by themselves for the most part.  Lana can even do arm over arm or "ice cream scoops" as they call them. 

I know some kids jump in the water and are swimming within a few months.  Mine are taking the long road. The one that takes at least four years to learn to swim well.   All that matters is that they end up in the same place, being able to swim on their own.  That way Mama can sit beside the pool and read a book while they play at the pool.   I feel like I might be only one summer away from that dream!