Love yourself, not your looks

We live in an era where young girls are taught that their looks are all that matter, and we have toddlers who are already obsessed with their looks. And it’s all society’s fault and by society I mean, all of us.

As young girls the notion that we must look perfect at all times is drilled into us either at home or with almost every social interaction we encounter or have encountered. Why? Because we live in a world that has been dominated by men, the very men who have made us think that we are less than them. We must be thin, we must have perfect hair, we must never leave the house without make up etc. Why? Who are we trying to please? The truth is women have been and are still being raised to believe they have to be porcelain dolls to please men for many years, until now. Don’t get me wrong, I love my husband and want him happy and I want him to feel proud that I am his wife but my goal is not to be beautiful for him. The truth is we should not be trying to please anyone other than ourselves nor should we be teaching these negative traits to our children.

Each of us is different, unique and special. Why not teach our children to love themselves and others. Let’s NOT teach our daughters and sons to grow up with negativity in their hearts and a senseless obsession to look like something they are not.

I grew up feeling ugly, I was thin so I remember making fun of my sister who was heavier than me. Yes that was cruel but when that is what you are taught is ok, than you don’t know otherwise. As I grew up and began to have children I began to gain weight, a lot of it. I struggled for a good fifteen years with depression, and a huge part of that was that I hated what I looked like. I was fat, period. And being fat was wrong, never mind that I was healthy I was fat and that’s all anyone could ever see so that is all I saw.

I put myself through dozens of diets, I lost weight a couple of times including sixty-five pounds in 2004 which required 2-4 hours of exercise daily. I still hated how I looked, my grandmother saw me one day and cried, she asked me to stop losing weight because I looked sick. And the crazy part was that according to the doctors charts I was still overweight.

I can now look back now and see how truly beautiful I was all along. I am beautiful, I have always been and it has nothing to do with my looks. It is my unconditional love for others, my extreme dramatics which fuel my passion, my ability to forgive and help others, my outgoing and fun personality and so much more. Those qualities are what make me beautiful but it does so from the inside out. It was always me, my looks are only a part of me they are not who I am.

Having Sophie helped me realize that difficult truth and after many years of self torment I can honestly say I love myself exactly the way I am. All my 208 lbs. I have cellulite, stretch-marks, a loose tummy and saggy boobs and that’s ok. Those are my medals of honor for creating six beautiful souls and nursing them with life. Every stretch mark and cellulite dimple are a part of my journey and I love them because they are a part of me.

I am healthy, I eat healthy and I am very active but yet I still weigh a lot and that’s ok. We are not all meant to be thin, sometimes genetics have a lot more to do with our physical makeup. My sister is now thin and I am the heavy one and that is totally ok with me because I love myself and her.

Instead of teaching our children to bully themselves why not teach them to be healthy. Eat fruits and vegetables instead of fast food, drink water or teach them to make natural juices or smoothies instead of soda and energy drinks. Let’s get our children off of electronics and out into the community, go to the park, volunteer or play sports. Let’s teach our children to live and love who they are because they are perfect the way that they were created.

I am a mom. I am thirty-five years old. I am not thin, I have wrinkles and I hate to wear makeup. I spend most of my days in jeans, t-shirts and converse. At home I’m always in my pajamas and most of them are all bleach stained and I love them! Some days I forget to fix my hair and I look hysterical and I’m ok with that. I don’t care what people think about me or my looks anymore and I have to say it is pure freedom. I love my curves’, all of them!

So learn to love yourself. If you really want to lose weight and be thin then do it. But do it for yourself not to because you are trying to please other people’s images of what you should look like. You can do anything you truly set your mind too.

Our ultimate goal as a society should be to be HEALTHY! We should teach love, acceptance and equality. Let’s teach our children to love themselves and others not what they see in the mirror.

 

 

2013 International Cri du Chat Awareness Week

Today marks the first day of the second year of International Cri du Chat Awareness week!!

Cri du Chat Syndrome also known as 5p- is a rare genetic disorder affecting 1 in every 37K-50K live births. The syndrome is known to result from a deletion in the short arm of chromosome 5 and represents one of the most common deletion syndromes in humans. This condition is found in people of all ethnic backgrounds and is slightly more common in females. They result from a chromosomal deletion that occurs during the formation of reproductive cells (eggs or sperm) or in early fetal development.

Cri du chat syndrome is a genetic disorder; it is not an illness or a disease therefore there is no cure.

A child born with this disorder has specific physiological problems which can result in their development being delayed both physically and intellectually. They may also have health problems because parts of their physiology have not developed correctly. The size of the deletion and the severity varies among affected individuals.

Individuals with Cri du Chat Syndrome have to overcome a lot of challenges but with the right intervention and support can live happy healthy lives.

When my daughter Sophie was born she was very sick, no one picked up on the obvious signs and symptoms of the disorder because it is so rare. She was diagnosed at two weeks old through process of elimination as they tried to figure out why she was becoming sicker with each passing day. The diagnosis gave a dark outlook on her future and according to the doctors they doubted she would have one.

The syndrome is so rare that many of us parents have to educate the medical professionals we take our children too. How can our children receive the proper care if the medical professionals treating them are not educated correctly on their syndrome or the symptoms and complications that arise from it. Our goal is to educate!

It is our goal, the 5p- Society who is made up of loved ones of individuals with Cri du Chat Syndrome to join together around the world to raise awareness. To educate medical professionals, family, friends and the general public. It only takes one person to make a difference. Wouldn’t you love to be a part of that? Read about it, share the information and be accepting. Learn more about  Cri du Chat Syndrome  and join us to support International Cri du Chat Awareness Week. Let’s give our loved ones a VOICE!

This year our theme is I can! It’s time to show the world that our loved ones CAN be happy and live a healthy and productive life. Education is key. Knowledge is power, with power we can make a difference. What are you waiting for? Help us make a difference.

So please take a moment to talk about it, share the information in an email or tweet. Help us let the world know we exist!

The Dentist

I have always had a fear of losing my teeth from as far back as I could remember, it was always my biggest fear. My family was not religious with making sure I got my teeth clean every six months but I did go enough to keep my teeth in pretty good shape.

When I was 13 years old I had a filling which they performed with no anesthetic which made me fear the dentist. It was almost ten years later that I decided I needed to get over that fear and go back. By then I had three children, I had no issues taking them to the dentist and I began taking each of them to the dentist a little before their second birthday.

Since that first time I took my eldest over fifteen years ago my children have never missed a cleaning and have had all the preventative treatments like sealants and flouride. Between them all they have had maybe six cavities which I consider a success for five children. Tristan has his first dental check up next month and Sophie has been going since she was two. Ariana is now on a regular schedule but I don’t think my sister ever took her before.

When I finally let go of my fears and returned to the dentist my childhood fillings had begun to break down. I was convinced I needed a root canal by a new office I had switched to and went ahead and had one. Biggest mistake ever, when I finally realized what they had actually done to my tooth for the root canal I cried and cried. It took years for the sensitivity to go away and it still bleeds when I floss.

As the years passed I became more and more afraid of losing my teeth, my mother is 53 and has lost almost all her teeth. I know her tooth loss was from neglect and possibly smoking and gum disease, it still scares me.

The last time I had a cleaning was when I was pregnant with Sophie four years ago. I had also begun to repair my fillings and then Sophie was born and that was no longer a priority. A couple of months ago I chipped one of my front teeth and for days I refused to eat anything but soft foods. I was terrified to say the least, I really was.

Today I finally got in for my cleaning and I”ve never loved the dentist more than today. Having a good dental insurance helps too. For having  carried six children who drained me of my calcium and energy my teeth look great and I only need to repair four fillings and they are very small. The dentist asked me if I ever had braces and when I said no he told me I am very lucky because my teeth are beautiful.

To any other person that would just be a simple compliment but for me it was huge it made my day, my month and the rest of this year. The only advice I got was to not brush them so much, yeah, who knew you can scrape away tooth enamel by brushing too much and by brushing at the wrong angle.

So now I feel really good! The hygienist gave me samples of several different flosses for me to try (I use the Glide floss) and some little rubber dental sticks she recommends instead of tooth pics. Not that I use tooth pics but either was they are cool.

Some may think I am obsessed with my teeth, maybe I am a little but that’s a good thing. Maybe now I’ll stop having nightmares that my teeth are falling out or that I need another root canal. Now that I know my teeth are good maybe my subconscious can let go of its paranoia and allow me to have a peaceful nights sleep.

No response from Make-A-Wish

I have shared with you my disappointment with the coordinator we had for Sophie’s Make-A-Wish trip. She was very delayed and did not communicate with me at all. She basically did not give a crap about my daughter or our family.

So I wrote a letter to the Make-A-Wish foundation about it because I wanted them to know how I felt. That was three months ago and I still have not received any correspondence from them, I was expecting a written apology but I did not even get that. I am very disappointed that such an important organization would be so neglectful.

Here is the letter I wrote them:

January 11, 2013  

RE: Wish Child: Sophie *********** 

Wish Date 12/2 – 12/8/ 2012

Dear Make A Wish Foundation, 

I wanted share the experience of my daughter’s Wish granted to Disney World, Florida.

First, my daughter Sophie will be four in April, she was born with a rare genetic disorder called Cri du Chat Syndrome (a.k.a 5p-) where a portion of the short arm of chromosome five is missing. My daughter’s deletion happens to be quite large and she is delayed in many aspects of her development. Her immune system has been compromised since birth, and her bodies’ ability to fight off bacteria is almost nonexistent. She aspirates which can be deadly if she develops aspiration pneumonia; she is immune to most antibiotics, forcing us to use medications not approved for children in an effort to kill off bacteria and keep her alive. She has cardiac and liver complications combined with severe pan sinusitis; this has basically lead to an incurable sinus infection.

Sophie has bilateral hearing loss and is quite petite as a symptom of the syndrome. She does not know how to eat so is primarily on a thickened liquid diet.  Keeping her growing and at a healthy weight is a challenge in itself. Sophie also has PDD and needs a lot of sensory input to keep her calm and can have issues when she is out of routine or is set off by something in her environment. There is so much about her I could write a book on it all.

When her early intervention coordinator brought up the idea of having a Wish granted for Sophie I was horrified that she would suggest it, but after speaking with her doctor who said that it was an absolutely fitting idea to our situation and getting feedback from our support team they helped me see it as a positive experience. Waking up everyday knowing that your child can be taken from you with no control is the most unbearable feeling. It’s a sad and harsh reality I live with.

Sophie was approved for her wish while we lived in South Florida earlier in the year of 2012. In June of 2012 my family moved to North Carolina for better services for Sophie. I tried for several weeks to contact our local Chapter after our South Florida contact told me all of Sophie’s information had been forwarded. Neither Chapters made the effort to help communicate with each other about the transfer. When I finally made contact with the coordinator here, Ms. ********  she seemed very nice but hesitant as I explained what we had been told in FL about Sophie’s Wish. 

Ms. *****  explained that the process would change a bit as we were now in NC and had to follow their policies, which was completely understandable to me. In the first few months she did reach out to me and inquired once or twice as I explained we had been told Sophie’s Wish had been approved for December 2012. We chose this date because Sophie does not sweat and could not be in the heat. After some back and forth she was finally able to set it up. There was no communication for a large gap of time and it took a while for Ms. ***** to respond to my emails when I would check in for an update.

As the wish date approached we discussed the travel method. I explained that Sophie is easily agitated and we had decided a flight would be better for her. Had I know the flights would include a five-hour layover I would have opted to drive. Had we driven we would have arrived 3-4 hours sooner than we did and I would have opted to not return home at 2 am. I traveled with my whole family, which included six other children in addition to Sophie. It was beyond stressful and had Ms. ***** talked to me about this I would have chosen to drive but she never reached out to me.

The lack of communication with her left little to be desired. In the weeks prior to our trip I had to request school letters for my children because the schools never received them, this took a good week to get after persistent emails. I also sent various emails and left various voice mail messages for Ms. ***** to contact me as we continued to approach the Wish date and because I was clueless as to what was going on.

 I received the wish packet three days prior to our departure date.  I really felt like Ms. ***** left everything for last-minute and gave my family and my daughter no importance. I was overwhelmed and felt no reassurance.  When I made Ms. ***** aware of all this I felt that she was bothered by me and very short in her email response to me. A couple of hours later as if she realized what she sent me, she tried to be polite but it was far to late.

After speaking to other Wish families at the Give Kids the World Village they all had their packets a week or more in advance and had a great contact and caring relationship with their coordinator. I feel as though we were cheated on this part of the experience. 

When we arrived at Give Kids the World we were beyond stressed and everyone was cranky and exhausted. Give Kids the World Village was amazing and all of its volunteers were great. The experience there was magical. This part of the trip was truly wonderful. The theme parks were great and we really enjoyed ourselves. Sophie was in heaven it was bittersweet but a wonderful experience.  The trip to Disney was the perfect wish for her. Sophie met the actress Ginnifer Goodwin while at Magic Kingdom and was included in the Lion King show at Animal Kingdom. All in all this has to be one of the most magical experiences a family can have.

I was disappointed that most of the other families had shirts and hats representing the Make A Wish foundation. It would have been nice if my family had received shirts and hats and not just a button. This is a way to represent the foundation and maybe you might want to take this into consideration for future wishes.  This would benefit both sides, maybe even a shirt that say’s I love a Wish child for the family members. This could make siblings and parents feel so much more involved and it gives a stronger sense of support too.

My intent in this letter is to share my experience, the good and bad of Sophie’s wish trip in hopes that another family does not have to feel the way we did. This was a once in a lifetime Wish for my child, so I expected or at least was hoping for the entire process to be a happy and positive experience. The negative portion of it all really took a toll on the overall experience for all of us. 

And another tip, it would be really nice to see Make A Wish follow-up with the families after the Wish has been granted. It’s not just a free trip, it’s so much deeper and more powerful than you can imagine. The foundation has now become a part of my families’ journey. It should be a priority for the foundation to keep a positive relationship with Wish families, especially since no one knows what the future holds. 

All of us families who have become receivers of a Wish for a loved one are real people, not just clients. We face obstacles many do not and overcome despair and heartache many could never endure. The volunteers and employees of the foundation should be educated on this, as it is so much more important than many could imagine. If you are interested in reading about Sophie’s wish in more detail you can visit my blog and read about Sophie’s Make A Wish trip there.

Should you wish to contact me, I have provided my email and home address. Additionally, I am not interested in receiving any further communications from Ms. *****  as she has already proved to me that this position of putting together wishes is not important to her.

Sincerely, 

Charity De Leon

 

 

 

Sophie, I CAN

With Sophie’s 4th birthday just a month away I have been trying to put together a video to share how far she has come. She has brought so much joy to my life she is truly a blessing and I am proud to be her mother.

The 5p- Society is putting together an I CAN video for International Cri du Chat Awareness Week so I used it as motivation for my video about Sophie. I feel like it has taken me forever but it is finally complete. I hope her video is one of the videos selected but if it’s not it’s still a win in my book.

As I made the video it was as if I was reliving the last four years, the pain and joy are all so present. There were so many videos and pictures to choose from I didn’t know where to begin.  But as you will see Sophie is pure happiness and has been from the day she took her first breath. Despite her physical, cognitive and health challenges she is strong and determined. I love my girl with all my heart, join me in celebrating what Sophie CAN do and support our special needs community by always being kind and open minded.

What I took for granted II

This is part II of What I took for granted. As I’ve been analyzing my life recently I realized there was alot I took for granted when we lived in Florida. All I have ever wanted was to be happy, especially after the sucky childhood I had or better the lack there of. And for many years I was happy, I had built of my life and truly enjoyed every moment of it until LIFE caught up with me.

When we lived in Florida the state where ALL my family is I was so consumed with surviving I did not stop to breathe often.  I love my grandmother with all my heart, she is the woman who raised me and while I lived close to her I did not make the effort to spend more time with her. She is not getting any younger and now that she is so far away I wish I had spent more time with her. I miss her, she is my Mima and the woman who wanted me when my mother left me in the hospital after my birth. I took the time we had together for granted.

I’ve been feeling lonely being so far away from my family and friends but it’s so much more than just knowing they are close by. For almost a year I have tried to make some friends here but I have had no luck. I miss knowing people where ever I went. They knew me at the grocery store I frequented, the produce market and even the WIC office. The familiarity of it all was nice, I am trying here but it’s hard. I thought I had a really good friend here but that ended in a disaster. Now I’m here alone in a state I’m still trying to get used too not enjoying myself and wondering if it was all worth it. I used to swear I was all alone when I lived in Florida and it wasn’t until recently when I had two severe anxiety attacks which merited visits to the ER that I realized I was not. In fact it is here that I am truly alone.

A huge motivator for our move here was services for Sophie. The school which has been great with providing Sophie with instruction and therapies according to her needs is really the only huge difference than the services in FL. When we first arrived I was able to get her set up with private therapies as well but now the private companies are dropping in home clients so she won’t be getting the extra therapies which leaves us with the same amount she received in FL. Here they offer diapers and respite care, well they do in Florida too. Sophie has been approved for the CAP C medical waiver here and it’s been a huge struggle just to get basic necessities, it only took 2 months (extreme sarcasm) to get all the supplies for the suction machine and I’m still waiting for the thick-it, pulse-ox monitor and resuscitation kit she had been approved for three months ago. I had to complain about her case coordinator and yet here I am still with no supplies. Some items I needed they could not provide but if I was still in FL I could have gotten it. So I wonder, was it worth it?!

I’ve realized it’s not always black and white. Sometimes the grass looks greener on the other side but when your they’re walking on it you realize it’s not. It’s basically the same, there may be some spots that are fuller than others but over all it’s just a green as it was on the other side.

It’s hard when you come from such a fast paced life to learn to slow down.  I thought I wouldn’t miss the big city, the ocean and the endless list of stuff to do and places to go but I do. I want to enjoy my life to the fullest and not take anything for granted and in order to do that I have to stop, breathe and recognize all the little things that make life great and not let a moment go by without enjoying it thoroughly. I guess I’m just a city girl at heart.