Friday, July 27, 2012

Yay Olympics Yay!

All day today Glitter has been bouncing around the house asking, "Mom when do the Olympics start? When, when, WHEN?!" Her excitement kept on growing and growing each day that passed. As we got closer to today I have been explaining to her a little bit about what they are and what kind of things we are going to see. I told her about the opening ceremony, medals, athletes and how they train very hard to compete and just about anything she would ask that she wanted to know more about. I just love the fact that she is so curious and just craves to know more and more. She reminds me of myself at that age, I always wanted to know more and more... I wanted to know it all.

So what would I do if I didn't know how to answer one of her questions? I will never forget what one of my college professors told me, "don't ever say 'I don't know' and leave it at that." I kept that little statement near and dear to my heart. If I don't know the answer to a question I will always say, "I am not so sure but I will get back to you on that" or "you know what? I am not really sure, how about we find out together?" It has been fun going online together and looking up Olympics information. If I didn't know how to answer she would raise up her little hand and sing "TIME TO GOOGLE!" She is just too cute!

To pass the time today we read a few books together and practiced her own reading skills, which by the way she is getting better and better each day. Each day she recognizes more and more words, it is absolutely incredible. I let her play on the computer for a spell as well. She really enjoys going on starfall and nickjr and pbskids. Then we did a bit of surfing to look at facts and videos of past Olympic events. Her main favorites are swimming and gymnastics in which her favorite from that are the uneven bars. I am a bit surprised at how much of an interest she has taken in swimming though. She has expressed to me that she really wanted to take swimming classes so I am going to find out more information on where she can take lessons.

Today was my long treatment day which means I am hooked up to IV's for most of the day. It also means that I was going to have one of those sick feeling days due to the side effects. I tried my best to take it easy today so that I wouldn't feel too sick. After we had dinner I prepared my room with tons of cozy pillows and the best comforters we had. We popped some popcorn and brought out some snacks and then it was time to start our 2012 Cozy Beddy Olympic Viewing Party. I have to say the opening ceremony was very beautiful and Glitter loved it. Especially the army of Mary Poppins! Poor thing tried to stay awake to watch everything but she couldn't make it. Her eyes started drooping as time went on. Good thing I was dvring it because I knew she would fall asleep. I assured her that we would finish watching tomorrow.

I am so glad that I am able to spend time with her and share this amazing event with her. I am not really into sports but I have always loved watching the Olympics. I have fond memories of spending time with my family and getting into the spirit of the games. Moments like these are some of the things I enjoy most about being a mother. Being able to feel the excitement and share it with someone that is special to me is simply amazing. Not to mention there are many messages and lessons to learn in the games. Teamwork, dedication, perseverance, pride, courage, the importance of dreaming and working hard to achieve those dreams. As the days go by and we keep on tuning in I am excited to see what seeds of wisdom will Glitter take with her. She has already asked me if one day could she be in the Olympics. Of course she can! I told her anything is possible. All she needs to do is dream and believe it and work hard to make that dream come true. That reminds me, I need to pick a good topic for our writing journals tomorrow.

I have been perusing around the net looking for some fun theme activities to do. I found a few arts and crafts projects that I think Glitter would enjoy working on. Hopefully I am feeling ok tomorrow so we can sit together and have a little bit of fun. I will run a few things by her tomorrow and see what she is interested in doing.

Are you tuning in? Do you have any events you look forward to? I am a big gymnastics fan myself.

Thanks for reading!


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Thursday, July 26, 2012

The Lemonade Stand

Today Glitter had one of her wishes come true. Since summer began she has expressed to me that she wanted to open up a lemonade stand and sell lemonade. At first I thought, ok...pretend lemonade stand! Lets do this! Sure, a pretend lemonade stand was fun, but she wanted the real thing. It does not surprise me that she wanted to really do it. She has always been outgoing and full of ideas and creativity. Unfortunately this summer has been rough in all aspects. My health has been terrible, so not only have I been very sick but we have also been busy scrambling to get to the seemingly endless amount of medical appointments I have. Another issue is the weather, either it is pouring rain outside or it is scorching hot!

As usual my mother has been taking Glitter to the park in the mornings when the sun is a bit more gentle on us humans! Then they rush back home because Glitter has very sensitive skin so despite wearing sunscreen if she is out too long oh boy she gets toasty. Sometimes it will storm for hours on end and they are cooped up in the house. Well today was a very special day, the weather seemed to be perfect and working in our favor! Sure it was pretty hot but things started to cool down after 4:00.

So this morning at the table Glitter declared today as LEMONADE STAND DAY! Not only was the weather nice but my father had the day off today and she wanted him to help her. My mother bought lemons earlier in the week in anticipation for the day that Glitter could actually open up her stand. Glitter was so excited she could barely contain herself. I reminded her that we needed to wait until the sun went down a bit so that it would be cooler outside. We spent the day reading books, coloring and finding things to do to occupy our time.

At around 4:00 the preparations began. Glitter took the lemons and she hand squeezed them herself into a large pitcher that my mother purchased for this occasion. She was so adorable putting the sugar in which she told me needed to be "just the right amount to be perfect!" We took one of my medical supply boxes to make the actual stand and we taped it shut so that it would be sturdy. She wrote lemonade very large on the box and grabbed a bag of disposable cups and off she went! Glitter, my mother and my father went outside and set up the stand. Unfortunately I could not participate outside and it was time for my IV antibiotic but I was able to see and observe from inside the house.

The sweetest sound in the world was hearing Glitter yell in her sing-song voice "LEMONADE! LEMONADE! GET YOUR LEMONADE! FRESHLY SQUEEZED! VERY YUMMY!" It brought tears to my eyes. I have to admit I cried quite a bit. I was so proud of her. I would have never had the courage to do that at her age. It just warmed my heart hearing her laugh and seeing her smile and have so much fun with my parents. I am so thankful to have them all in my life. What tugged at me even more was that she was going to charge for the lemonade but she changed her mind. She came inside and told me that she was going to give it away for free because it is hot outside and people are thirsty. She wanted to refresh people with a nice treat. My mother called a few of her friends and the next door neighbors so that they could pass by since it seemed to be a slow day and not too many people have been passing by today. The next door neighbors came by first and even though Glitter said she was giving it away for free they still gave her some money. I thought that was so sweet.

A few passerby's came around and stopped to get some as well. There was a pair of boys riding by on bikes and they also stopped for some. What I found even sweeter was that they left to their houses and came back to bring some money. Glitter got a bit of change accumulated and she was so excited to put it into her piggy bank. I am so happy because she got a nice number of people stopping by. She ended up emptying the whole pitcher! My mother and father took numerous photos and I am so glad they did. They are definitely going into the summer scrapbook I am making for her.

I am so proud of Glitter and just overjoyed. Nothing makes me happier than seeing her happy and just having wonderful life experiences. It is hard for me sometimes because I wish I could be a bit more hands on when it comes to things outside of the home, but I am glad to have my parents that take my place in that respect. Even though I was not physically there with her I was out there in spirit, plus I would just pop my head outside from time to time. Every time a person would stop for lemonade she would run back into the house to tell me about it.

Despite feeling sick today each time Glitter would come in to chat she would give me a huge hug and that was the best medicine of all. Her hugs always make everything better. I am so happy that she was able to experience this and that she had a good time. Tomorrow will be a new day, full of love and new adventures. I hope we are able to cross something else off her summer fun list tomorrow.

Thanks for reading!

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Sunday, July 22, 2012

Smile Sunday - Episode 2

Health-wise, this week has been very rough for me. I seem to be battling a few things that just don't want to resolve themselves despite being on tons of antibiotics. I see some improvement in some things but then I do not in other things or the improvement will be short lived. Not to mention the weather has been awful. It is either scorching hot or raining like crazy. The other day I stepped out onto my front porch for less than 3 minutes and it felt like I was trying to breathe in a plastic bag. The humidity and heat were absolutely insane. Then I turn on the news and the meteorologist was advising people with respiratory problems to stay indoors. Good thing I don't go out because if not I would be in deep trouble.

Not only am I dealing with a few infections, but the antibiotics I am on are making me sick. Unfortunately I can't get off of them because these are the specific ones that I need to try to get rid of the germ party that is happening in my lungs. I know I haven't really explained what is going on in detail but I will soon enough. So I have been laying low this week and I feel terrible about it because it has put a bit of a damper on the activities I had planned with Glitter this week.

Yesterday and today were supposed to be full of arts and crafts projects but unfortunately we had to put them on hold. So this weekend we worked on sight word activities. I was able to find a few worksheets and put something together. Worksheets and workbooks are nice but I really don't like them to be the main thing that we do. I like activities and hands on learning and I think that is truly the best way to learn things. So we did a color by sight word coloring page and we played a sight word game.


On a separate sheet of paper I made 6 columns and a few rows and wrote down various sight words, words that Glitter is supposed to be able to read and recognize in time for kindergarten. We didn't have a dice available so as you can see, I took one of her building blocks from her seemingly endless wooden shapes supply. So I used a permanent marker to make our game dice. We would take turns rolling the dice and depending on the number we would go the corresponding column, read the word and color it in. Now if she couldn't read the word she couldn't color in the box. I played as well but she had to be able to read my word so that I could color it in. What is funny is that she could have totally cheated and pretended she couldn't read the word during my turn but she didn't do it. She really enjoyed the game and wanted to play it over and over again. So I am making a few game boards that we can use throughout the week.

Today has been a day full of body pain and flu-like symptoms with a long episode of my daily fever, sweats and chills.  I had to take both of my IV antibiotics today so it is a long infusion day. I let Glitter play some Wii for a bit and we did a bit of coloring after that. Then she was off for some imaginative play with her toys while I stayed on my medication schedule.

I need a bit of a pick me up today so how about another Smile Sunday? Here are some of the things that are making smile at the moment:


Yes, I am a nerd and proud of it! I absolutely adore Sailor Moon which was 1990's anime and manga series from Japan. I recently got my hands on the first 6 mangas and I am now re-reading the series. I am falling in love with the story all over again. What is even better and totally makes me giddy with excitement is the fact that they are creating a brand new animated series scheduled to be released next year! Once I am done reading the mangas I am going to re-watch the entire series.


My fuzzy marshmallow slippers are the perfect treat when I need a pick me up. I love slippers and I have quite a few but these have to be my favorite. My aunt gave them to me as a gift when I was in the hospital last year. They keep my feet nice and warm and I feel like I am walking on clouds with them on.


I love to draw and doodle. Drawing really helps me relax and it helps me get my feelings out when I just have a full jar of them floating about. If you were to take a peek at my notebooks you will see that I can't seem to keep a page doodle free. I can't help myself, I just have to fill up a blank space with a quick sketch or two.


Board games are some of my favorite games to play. I will always say I am a kid at heart because I just love to play games. Now that I am an adult I really want to amp up my board game collection. It is pretty small right now but whenever there is a nice sale I always make sure to buy a new one. Candy Land is one of my favorites but my favorite board game would have to be The Game of Life.


I love to write. Another one of my favorite stress relievers would have to be writing. It could be about anything really. Even making lists is relaxing to me. My desk is full of notebooks and paper and pens. I always have to have a notebook and pen with me at all times to jot down anything that comes to mind. The more I write the better I feel. There is nothing better than a fresh clean notebook just waiting to have its pages filled.


Finally we have a household favorite, Billy our big mouth bass. Glitter loves this thing and just went crazy the minute we found it. It was tucked away in one of our many boxes we had in the attic. Does anyone remember these things? You press the red button and the fish comes to life singing "Don't Worry, Be Happy". Since we took him out of his hiding spot Glitter has made it her duty to make him sing to us daily.

So there you have it, episode 2 of Smile Sunday is complete. In the words of Big Mouth Billy Bass, "don't worry, be happy!"

What are some of the things that make you smile?

Thanks for reading.

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Friday, July 20, 2012

Tough Stuff and Tragedies

This morning I woke up just like every other morning. My daily routine consists of waking up around 6:00 or 7:00 depending on whether or not I fell asleep to music and several other factors. My body is already used to getting up around these times automatically from the previous school year. I can be absolutely exhausted, yet I can't fall back to sleep because my body is yelling at me, telling me that it is wake up time and time to start the day. So I woke up today at around 6:30 to the sounds of a playlist from my phone. Lately I have not been able to sleep unless I have music on, which is something that I haven't had to do since high school. I got up and began my usual morning activities. This includes my morning nebulizer breathing treatment, then it is off to the bathroom where I usually spend my morning feeling sick. The antibiotics I am on tend to mess up my stomach really bad but the feeling comes in waves. One episode in the morning and then another episode around the afternoon or evening.

Once I am over my morning episode I make my way over to the kitchen to have a light breakfast in order to consume my real breakfast. You know, the breakfast of champions. I take all my morning medications after I finish my meal and I usually sit down and let things settle for a bit. Then I take any liquid medication that I need to take and then I get my first IV antibiotic dose for the day out of the fridge and put it on. Papi Mouse called my cell during that time and I was a bit surprised because he normally doesn't call me so early in the morning while he is at work. I thought something was wrong but it was something completely opposite from what I was thinking. He broke the news about the terrible tragedy that happened last night in Colorado. He urged me to turn on the news and I did after I let the information sink in.

I was speechless really. I couldn't believe that something like this could happen. I may live a million miles away and I may not know anyone that was in that theater but it still hurt my heart. It still baffles me at how anyone can perform such senseless acts of violence. The whole situation was a terrible tragedy and to make matters worse there were children involved. Knowing that hurt me even more and it made me think of various what if scenarios. I can't even imagine the sheer terror of the people in that theater who were just there to enjoy a movie. The confusion and the panic and thinking it was all apart of the show. It is times like these when you start to think no place is safe anymore.

I am sure they will begin banning coming to movies in costume, which is sad because I know a lot of people who enjoy dressing up as their favorite characters to go watch a movie. I heard mutterings of the placement of metal detectors at theaters as well. The finger pointing will begin, parents and non parents alike blaming the media and other things for the increase in violence. I mentioned this in a status update I made on Facebook, the real person to blame for this tragedy is the shooter himself. Not the movies or television or even violent musical lyrics. This guy seemed to be the average college joe without a criminal past.

As I sat watching the coverage, Mami Mouse and Glitter woke up. Needless to say my mother was in shock. We were both faced with a dilemma and that was whether or not to continue to watch the news or not. Glitter is only 5 years old and I was worried about anything too graphic being shown on camera. Do I let her watch? Do I discuss it with her? Should we just shut everything off and forget all about it? There were many ways to go about this, and I thought it could be a teachable moment so to speak. I could either shield my child and act like nothing happened. Continue to keep everything light and happy and safe. Or I could explain things in terms that she could understand. I could show her that unfortunately there are people in this world that hurt other people and they do not care about anyone. So I decided not to shield her, it was time to have a chat.

Before I even had time to explain anything she was already asking questions. I am just thankful that since it was very early in the morning most of the graphic footage was not shown at that time. She wanted to know the who, what, when, where and why of things. So I sat down beside her and I tried to explain things as best as I could. I asked her how she felt about it and if she was scared. I told her that if she feels nervous or scared she can always talk to me about it. I let her know that she is safe with her family and that we will always keep her safe. We talked about what to do during emergencies and how important it is to stay close to a family member when you are out.

Glitter said she felt bad that so many people were hurt and how she wishes she could help them. I decided that this would be a good moment to talk about how we can help people. I have two composition notebooks that we use to write daily journal entries this summer. One notebook for each of us and we do our writing together. It is a great way for Glitter to practice her writing skills and her word recognition. The pages also have a blank space so that she can draw a picture. I think it is good writing and drawing practice for myself as well. So I decided that today we would write about how we can help others.

After our morning learning session my mother had to run some errands so she decided to take Glitter with her. She was a bit apprehensive to go out but I assured her that she is safe with grandma. I spent the rest of the day sticking to my medication schedule as well as tuning in to the coverage and trying to work on a few personal projects. I wondered if I did the right thing by talking to Glitter... I certainly think she is old enough. Although this happened very far away it is a terrible event that could happen anywhere really. Even though we didn't know anyone in that theater those people were mothers, fathers and sisters and brothers. Somewhere someone is going to sleep tonight missing a loved one. These things can happen to anyone. I think tomorrow I will go over a safety plan with Glitter. I have one in place already but we really have not discussed it in great detail. Now is a good time to start going over it.


My heart goes out to everyone who was affected by this terrible tragedy. I am sending hugs and love.


Thanks for reading.


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Sunday, July 15, 2012

Smile Sunday!

It seems like this week has flown by rather quickly, I have to say the older I get the faster time seems to move. There are times when the day just seems to drag on and on though. Today has pretty much been a low-key day. Glitter and I spent the morning going through the arts and crafts supplies section of my closet. We made a checklist of all the items we need to restock or buy for any future activities that we have planned. It is amazing how much stuff you seem to accumulate over the course of a few years. I found a tiny bag full of buttons and googly eyes just ready to be used! Tucked away in the closet we also found an old Disney Fairies jewelry making kit that has not been used yet. I think Glitter got it for Christmas when she was about 2 or 3 years old and I put it away since the pieces were so tiny and we kinda forgot about it.

So upon making this discovery Glitter decided that we should spend the morning making a few fairy pieces. Here is her finished project:




After our jewelry making extravaganza, Glitter asked if I could paint her toes. So we had a little pedicure session. She is wearing Savina Purple Hologram with Savina Hearts layered on top. I think the combination came out very nice.


After a quick lunch my parents took Glitter out for some Sunday fun and to run a few errands. I began thinking about various things as I continued on my usual schedule of medications and rest. Lately I have been feeling a bit blue. I am normally a very cheery person. I love to laugh and make jokes and just enjoy life. Sometimes illness takes its toll and I can't help but feel a bit overwhelmed and frustrated about my current situation. It is only natural though, if I never felt these feelings I think I would really be some sort of robot. Dealing with chronic illness and having to accept all the changes that I have had to make and just try to look on the bright side of things can get a bit challenging. Like I have expressed before, I can't just wake up one morning and decide I want to run to the store to do some light shopping or take a walk to the park. My illness keeps me homebound and the only times I ever do leave is to go to the doctor or if I am worse for wear, the hospital.

It is times like this when I make it my duty to focus on the positive things and things that make me smile. So I declare today SMILE SUNDAY! What are some of things that make me smile?





My three garden gnomes! My mother bought these for me recently after I expressed to her that I have always dreamed of having a home with my very own garden gnomes. I was so happy when she came home with the surprise of not just one gnome, but three of them! Here they are guarding our front yard. Glitter loves the gnomes too. We still haven't named them, but Glitter is working on that.


Baking! Whenever I feel down or stressed I can always count on baking to make me feel better. Of course, this is only when I am well enough to actually bake. Glitter usually helps me out, especially when I am under the weather. There is never a dull moment when I am baking with Glitter. We usually take turns going through the various steps and she really loves to help decorate the final product. I try to put in some literacy and math learning into our baking time. We go over measurements as well as reading the directions out loud. One time we baked a batch of cupcakes and decorated them with the letters of the alphabet. I would make the letter sound and she would have to determine what letter it was and write it on the cupcake. I think one of her favorite things to bake is a Hello Kitty cake which we make using a Hello Kitty cake pan that I bought recently. Here is how it looks before decorating:




Nail polish and painting my nails makes me happy! Painting my nails is very therapeutic for me. Whenever I am looking for something to relax me, I just need to take out my nail kit and a few bottles of polish and get to work. I usually wear a mask because my lungs can't really take the fumes. I wore this manicure this past week, it is a bit messy because I wasn't feeling too well and wanted to rush through. This is Nicole by OPI Fuchsia Wife with Nostalgic Lacquer Angela layered on top. A very bright, happy combination that just screams summer in my opinion.


Glitter! Glitter nail polish, glitter stickers, loose glitter, any type of glitter really. I just love the stuff. If I could cover everything in glitter I would.


Most of all, the thing that makes me happiest has to be my daughter Glitter. She always knows what to do or say to make me feel better. She goes above and beyond to try to make me laugh and smile. I am so grateful to have her in my life. She is just such an amazing person and I think I am very lucky to be her mother. Hearing her call me mom and hearing her tell me she loves me just makes me float on air. To me it is the best feeling in the world.

I like Smile Sunday. I have this big goofy grin on my face right now as I finish typing up this entry. Its nice to just sit down and think about all the positive things in your life, be it big or small. I think I am going to keep this and make every Sunday Smile Sunday. So, what makes you smile?

Thanks for reading!


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Tuesday, July 10, 2012

A Body Destroyed By Disease


Photographs are things that are treasured by most people. Over the years we tend to collect them, little snapshots of memories long past that take residence on our walls, in an album, in our wallets or perhaps in a keepsake box. The only thing that truly never dies when someone passes are the memories that are carried on by family and loved ones. If you so happen to become famous even strangers will carry on your legacy. Even if the person doesn't have anyone to call a friend or a family their memory lives on, perhaps through a discarded license, a polaroid photo, journal entries or any other type of media that was left behind.

Why am I discussing this? Why am I talking about memories that will eventually be left behind either for yourself to reflect upon or for others to enjoy? This summer is the summer of cleaning in our home. Since school ended, my mother declared that we would go through the attic and all the closets in the house and just clean, organize and get rid of things. Time to go through the clutter of everything we have collected as a family and see what we want to keep or what we want to let go of. Not only does that include knick knacks and old retro objects, but also a seemingly endless amount of photographs.

It has been nice flipping through old albums and seeing precious moments that will live forever. Pictures of my mother as a young girl, of my father hanging out with his band when he was in his late teens. Then there were pictures of my younger sister and I growing up together. The countless birthday parties, special occasions, even those in the moment photos that are not planned at all. My mother has always been the one behind the lens, she is the family photographer. Mami Mouse is the type of person who needs to capture every single moment on film, much to the dismay of others who are just too tired to pose for that special shot. When I was younger I used to hate posing for the billions of photos my mother loved to take. It seemed like she needed to document every little thing and you know how kids are, they just want to get up and go!

Now that I am an adult I am much more appreciative of my mother's dedication for documentation. If it wasn't for her constant effort, I wouldn't be able to share these wonderful treasures with my daughter. I wouldn't be able to look at pictures from my youth and sit down and wonder. How did I get here? Why did it come to this? Will things ever be the same? All the if only's and all the I should haves or I could haves... I know this must sound confusing. One minute I am talking about memories and pictures and how nice it is and now this?

When I was younger I really didn't have much of a choice when it came to pictures and video. If my mother had the camera in hand there was no escaping the photo. So regardless of how any of us were feeling that day or how we looked a photo was going to be taken whether we liked it or not. This leads to some interesting pictures. So regardless of whether or not I gave myself a uneven haircut while playing beauty salon with my sister, or if I had accidentally drawn on my sister with markers that didn't wash off easily a picture was still going to happen. I was always the sick kid growing up so naturally there were the occasional sick kid pictures. Pictures of myself during some of my most less than stellar times. 

I was able to see some physical changes as a result of illness and medication. Sometimes I would be a skinny little pale creature. In other photos I would see a different version of myself; the pudgy, bloated Mousey full of IV marks and sporting the latest chipmunk cheek look. A face that is known as Moon Face. Anyone who has ever heard or been on steroids should be familiar with the term. That round faced look that a patient who is dependent on steroids gets when they have been on them long enough. Seeing myself morph into different versions of myself growing up was quite an interesting experience. Glitter sat by me and would happily make observations and comments and say how beautiful mommy was. There were several pictures where I did not resemble myself and I honestly did not think that Glitter would even recognize me but she did. She recognized me every time. It made my heart sing knowing that although I am my toughest critic and in my eyes I looked odd, she still saw me for me. 

As we made our way down memory lane and progressed in years my personal photographs began to shrink to smaller numbers. We went through my childhood, pre-teen, teen years and we came at a halt in my early to mid twenties. My health declined when I was pregnant with Glitter but after she was born the nose-dive began to occur. Soon I was battling infections every month, sometimes strange infections but mostly respiratory. I was constantly on medication and antibiotics. I then received a diagnosis that would change my life but that was not the end of my journey. I thought that hearing that four letter word my problems would be over but they were only just beginning. Then I received another diagnosis that would change things even further. But that is a story for another day. This is more of a focus on how my body has changed, morphed and sometimes I feel destroyed not only by disease but by the very medications that are supposed to help. 

Since my diagnosis and since I was placed on various treatment plans I have declined to be in many photographs. I have had to learn how to cope and accept myself for this shell of a body that I have now that has been changed. Of course we are always taught that it is not what is on the outside that counts but what is on the inside. This much is true, I am still me inside of myself. I am still Mousey but the exterior is something that we must live with everyday. I have loved ones that want to take pictures with me. I have mirrors in my home. Loved ones who see me everyday. You simply can't escape focusing on your appearance from time to time. Especially when the changes that have occurred happened so rapidly that you had no time to adjust to them properly. I made a conscious choice to ask my family not to take any photos of me at my lowest point. Perhaps in the long run I am doing a disservice to myself. Don't get me wrong, sometimes a picture or two will slip through. I grin and bear it and I accept it but deep down I cringe because when I look at the frozen memory I do not see myself. I see a body destroyed by disease. 

Though I always recovered from these changes growing up because there were times I was weaned off some of the medications, this time I wonder if I will ever bounce back. It has been expressed to me that I am a complicated case and my treatment plan is for the long haul. My health is in a different state now than it was growing up. Therefore I don't know if or when I will ever be able to come off any of my medications and try to regain a part of the old me. This is quite a difficult predicament because I have always made it my duty to teach Glitter what I was always taught. It is not what is on the outside that counts it is what is on the inside. It is easier said than done really, it is so hard to practice what you preach sometimes when you are in a situation like this. 

Having Glitter by my side is a blessing because in her eyes I am beautiful. She has been there with me, witnessed my changes and to her I am and will always be her beautiful mommy. Knowing that makes this journey a bit easier. She tells me that she knows that I look different now but everyone goes through changes and nothing lasts forever. I am always amazed at how mature she is. I look into her eyes and I see so much wisdom inside of them. I wonder how I got so lucky to have such an amazing daughter. Many people have told me that Glitter is special and she is very smart. One of the wonderful qualities that she has is empathy and I cherish it with every fiber of my being. She always seems to know what to say or do to make anyone feel better. As much as I avoid photo sessions like that plague, whenever Glitter asks to take a photo of me or with me I simply cannot refuse. I never thought that I could feel beautiful or feel myself in this state that I am in but somehow with Glitter's help I can. With her help I am able to remind myself that I am more than just my shell and it does not define who I am. 

Today as I was watching her play with her new hula hoop that Mami Mouse bought her I simply smiled and said thank you to her. She did not ask why, she just simply put down the hula hoop walked over to me and gave me a big hug and a kiss and told me she loves me. Without even saying anything she understood and in my heart I wanted this moment to last forever so I did something that I had not done in a long time. I took a photo of us so that I will never forever that there will always be someone in my corner and no matter how much I change on the outside she will always remember me and love me for me. 

Thanks for reading.



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Sunday, July 8, 2012

Summer Fun List

The day after Glitter finished pre-school we sat down together and made a summer fun list. I have been seeing a lot of summer bucket list postings on various mommy and teaching blogs. So I decided that this was a fun little activity to work on together as well as great way to add a bit of structure to our summer. Even though we try not to make any set plans due to the unpredictability of my health, it is nice to know that Glitter has various things that she definitely wants to accomplish this summer. So once it goes on the list, it doesn't matter when or how, it will eventually get done! Glitter made the suggestion about calling it a summer fun list instead of a bucket list. She told me that she doesn't understand how buckets are any fun. She is so hilarious.

Glitter chose the brightest sheet of yellow construction paper she could find. According to Glitter, "yellow is the color of summer and sunshine." I have to agree with her, the perfect colored paper to make a fun list. In order to incorporate some hidden learning into this activity I decided to bring out a pile of old magazines. We sat down at our dining room table together and went on a Letter Hunt. I told her that we were looking for letters that spell out her name as well as the letters in summer, fun and list. Together we would look through the magazines and she would cut out the appropriate letters in order to spell out all the words in the title of the list. This is a great way to work on letter recognition as well as spelling and reading. Once all the letters were cut out and put in a letter pile, Glitter would sort through the letters and put them in the correct order. Finally, once in the correct order the finished words would get glued onto her sunshine paper.


After we finished gluing the title it was time to sit down and list the things that she wanted to accomplish before the summer ends. We divided her goals into 4 different categories: what I want to play, what I want to learn, what I want to make and where I want to go. It did not take long for Glitter to come up with a long list of everything she wanted to get done. Each category ended up having about 10-11 goals. Once we wrote the list down on her sunshine paper we taped the list to the door of her room so that we can look at it daily and decide what we can do that day. So here is her list of things she wants to do before the summer is over:


  • Play hide and seek
  • Play bingo
  • Play doll slumber party
  • Play polly pocket treasure hunt
  • Play costume party
  • Play play doh restaurant
  • Play camping
  • Play in a pool or in sprinklers
  • Have a play-date with her best friend
  • Play scavenger hunt
  • Play fancy tea party
  • Learn to read (read a long book without help)
  • Learn to play freeze tag
  • Learn to swim
  • Learn to paint/draw
  • Learn to write a story
  • Learn how to be a mommy
  • Learn how to not be afraid of the dark
  • Learn how to use a computer and type
  • Learn how to use the phone and make a phone call
  • Learn about other countries
  • Make felt animals
  • Make ice cream and icees
  • Make special cupcakes and smoothies
  • Make musical instruments
  • Make dinner for Grandma and Grandpa
  • Make a large painting
  • Make things that glow in the dark
  • Make a tie dyed shirt
  • Make a kite
  • Make special bubbles
  • Make some science experiments
  • Make princess doughnuts
  • Go to the park
  • Go to Friday's
  • Go to Jumpin Jamboree
  • Go to the movies
  • Go to the beach
  • Go see animals at a farm
  • Go fishing with Grandpa
  • Go to church
  • Go to Sawgrass Mills Mall
  • Go to see a show (musical or play)
  • Go to a museum
  • Go to Cold Stones and eat a big ice cream
  • Go on a picnic


So there is the list. We still have a long way to go in terms of activities but we are making good progress. Some of the activities like going to the park, movies and Cold Stones were only possible because of my mother and aunt who are able to take Glitter out and about. Now the learning category will probably be all crossed out at the end of the summer because these are daily ongoing activities where we learn little by little each day. We are currently working on her reading skills as well as her writing skills. I have been trying to introduce her to a different country and its culture each week so that we can focus on various aspects of each country. I will make a separate post about the various activities that we have completed.

Some of the items from the play category have been done but I cannot cross them out because Glitter has a certain criteria that needs to be met in order for it to be considered crossed out. So even though we have played bingo quite a few times we can't cross it out until Glitter says so. She told me it has to be a very special game of bingo in order for it to get crossed out. She hasn't really told me what the specifics are yet, I think she is still thinking about it.

The go category will also be something that will mostly be accomplished later on when my sister comes for a visit. She was supposed to come down in July but recently got a promotion so she had to move her vacation to August. We have already discussed her taking Glitter to Jumpin Jamboree, which is an indoor amusement center and bounce house. I really hope that we can get everything done this summer. I told her it is ok if we can't, we can always try to finish it slowly before the year is over. Now I am inspired to make my own summer goal list. I will share it once I am done.

Thanks for reading!


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