Dear Sophie, you are 6

Today I want to take a moment to celebrate Sophie on her 6^th Birthday!

Today is the magical anniversary of her birth, the day that changed my life forever. My amazing little girl who would be the key to my own self-acceptance and growth. Who would have imagined that my fifth child would be the key to truly understand the meaning of life?

Dear Sophie,

Today is your sixth birthday and there are a few things I hope you will one day know. When you are older I will read you every letter I have written you so that you may know just how amazingly loved and special you truly are.

Like a phoenix you always rise from the ashes, there is no darkness you cannot illuminate. Your presence is powerful. You emanate light and happiness even in your toughest moments.  You are everything a person should aspire to be. Strong. Determined. Loving. Beautiful. Smart and above all, Happy.

Your soul is pure perfection, a small glimpse of the pureness of heaven. You are our gift, we are the ones that are lucky to have you in our lives.

You see the world differently than most of us do, you see it in real-time while most of us are in auto pilot just gliding through it. The world is a loud and crowded place and you can see that with clarity, I know that with certainty. But you can also see the beautiful wonders the world has that most people take for granted. To watch you live is such a beautiful experience as I see you absorb every moment and live it completely.

I would have never grown to be the person I am today without you. Being your mother helped me to understand life. You taught me to live in the moment and love unconditionally. Being your mom has made me a stronger woman. I pray for you more than I pray for myself and that gives me joy. Through your life I have come to know God’s love for us, his grace and his miracles.

You may have been born with a missing piece of chromosome 5, and so many horrible sicknesses but God has surely blessed you with life despite what nature had in store for you. You are complete. An amazing soul and wholeness many will never experience and many too blind to see.

There is so much I could tell you about how much we love you, and how much you mean to so many of us but words just cannot describe the grandiosity of it all.

You are amazing! You are my daughter and I love you always and forever.

My shining star!

HAPPY 6^th BIRTHDAY NINA!!

End the Word 2015

Today is the 2015 “End the Word Day”!

I am joining the many strong individuals who will fight for what is right, to stand up for our families, friends and communities. We are using our voices to STOP the HATE, we must stop the discrimination and degrading of individuals. Together we can make a difference!

Many of us used the word retarded or retard as children and sadly many still do. It’s ugly, it’s not just a word it’s a feeling. The r-word is offensive, derogatory, insulting, cruel, discriminating and it’s continued use is just plain WRONG. Change begins with us, it only takes one person to make a difference. Imagine how many lives we can change when we are united, when we are many. We must teach our children to be kind and accepting. There are no two people alike and there never will be. We are all created equal!!

This is my beautiful AMAZING daughter Sophie. Sophie has Cri du Chat Syndrome, born with a missing piece of the short arm of chromosome 5. We were told she would not survive and would never function because she would be mentally retarded. Sophie is “developmentally delayed” but perfect the way she is. Sophie is stronger than anyone I know and SHE IS NOT A LABEL! She is my daughter!

In 2010 the US Senate passed “Rosa’s Law” which is for the purpose of eliminating the word (s) retarded or retardation for the purposes of diagnoses, education and eligibility for persons who are disabled. The terms “mental retardation” are now “intellectual disability” and “mentally retarded individual” is now “individual with intellectual disability”. Other parts of the world like the UK frown upon the use of these words. We would not use the word “cracker” to describe a Caucasian or the word “nigger” to describe an African American, nor would we use “spik” to describe a Hispanic. Why? Because the use of all of these words are unacceptable. They are derogatory and demeaning. So why is it ok to use the word retarded?

Mental retardation or retarded are words that were used in an era long ago to describe individuals with disabilities. It replaced the words idiot, imbecile, moron, mongolism and trainable; it is because of this association that it is unacceptable to use these words. Until the middle twentieth century individuals with intellectual disabilities were hidden behind closed doors. It was shameful to have a family member that was different and the majority were institutionalized from birth so many never even knew they existed. Those that were educated were excluded from public education or were educated away from the typically developing individuals. Over time the word (s) began to be used as an insult or joke using it casually to demean someone and or to describe them as stupid or incapable of learning. And this is what is still being taught today in this generation, and it’s sad that in this day in age there exists such ignorance in the world.

It is appalling that people in the public eye think it’s ok to use the word so freely to describe something or someone they dislike or even to reflect their behaviour as stupid. There are so many people out there using the word, it’s all around us from your neighbor to children to celebrities and politicians the use of the word has become a routine. It’s very sad that we are teaching our children “hate” instead of acceptance and equality.

People with intellectual disabilities are not seen as equals in our society and are refused the acceptance as full citizens. Why? Because society has created many misconceptions of who individuals with disabilities really are; they have been subject to discrimination in most countries around the world for centuries. They have been targeted, sterilized and even executed for being who they are. By devaluing human life and agreeing to use hateful, demeaning words to express yourself you are enabling HATE and agreeing that a human being has no value.

My daughter was given the medical diagnosis of “mental retardation” when she was three months old on paper. In the almost six years of my child’s life not one doctor has ever uttered those words to me, why? Because even they know it is a discriminatory word and they are the experts. The truth is that individuals with disabilities are worth just as much as each of us, they are member’s of our families and communities and that they are amazing people.

It’s about more than just a word, it’s about respect! Respect for human life. As a society we must stand up for what is right and stand against what is wrong. Our children learn from us, it is crucial for the future of this country and for humanity that we stop teaching hate.

Spread the word to end the word!

END HATE!

Harder. Yet easier.

It’s been a bit since I’ve posted, sorry for the delay but life is has been really busy lately.

As time passes I find myself coping with different situations differently as they arise. Sophie is becoming more independent and really finding herself but that is rocky terrain in itself. Her ability to comprehend is growing but with it her frustration with her inability to communicate verbally. She wants to say so much but just cannot.

It’s hard. Some days she won’t stay still, she bounces around the house knocking down picture frames off the walls, swiping everything she can reach off of counters and kicking down child gates, attacking her siblings and so much more. Some days my mother in law and I find ourselves speechless. And for th ose that know me know that says a lot, I always have something to say. Recently however I just cannot find the words to explain how I am feeling.

Aggression. It is manifesting itself more and more each day. It’s devastating. It’s overwhelming. It’s sad. Why. Why must my little girl go through so much. Some days there are just no words to describe it all. When she wants something and we cannot figure out what it is she becomes upset, she will bite and pinch and pull hair. And no matter how much you tell her to stop its as if she cannot control it. You can see that she understands that is not nice but she just cannot help it. She will cry, and she never cries. She starts biting her tongue in frustration and develops ulcers and will even stop eating from being overwhelmed.

Every day gets harder. Harder to watch her grow older and yet developmentally she is years behind. Harder to watch her struggle when she tries so hard. Harder to watch her absorb the changes around her and know that she is trying to understand it all but just cannot. It’s hard knowing that the future holds so many challenges.

And yet some days are easy. Easy to see her for who she is, a beautiful innocent little girl. My little girl. The little girl I longed for and begged God to give me. Easier to see past this Syndrome that took over our lives for a time and easier to see an individual full of determination and love for life.

It’s easier to wake up each day looking forward too seeing my girl. Easier to look to the future with my girl by my side. Easier to connect with her as she understands more and more each day. It’s easier to cuddle and enjoy a movie with her. And so much more.

It’s harder yet easier. It’s a love hate relationship with Cri du Chat syndrome. My daughter has it so in a sense I love it because it is a part of her and will always be but I also hate it for all the struggles and heartache is has caused and will cause in our lives.

Each day becomes harder and yet a little easier.

Cried myself to sleep

We have been really busy in the last few weeks, including moving to a bigger house. My mother in law left to her country for a month and she is the one who helps me with Sophie. Sophie was having a hard time adjusting to her not being here and then the chaos with the move really overwhelmed her. I had to unpack the house within the first two days of moving, I even stayed up from one day to another to try to speed up the process. Sophie refused to eat for about four days and she lost a lot of weight.  But as soon as the house was unpacked and I reassured her this was “home” she started falling back into her routine and eating again. I am happy to report she has regained the weight and is back to eating every two hours.

This has been the best year Sophie has had since her birth, thanks to the combination of medication and respiratory treatments we have found a way to control the symptoms to her lung and sinus diseases. This has helped her maintain better health, she has a better appetite and she has even begun learning more and at an accelerated rate. I am so grateful to her doctors for never giving up on my girl.

Some days I don’t even think about Sophie’s lung disease but then we have a bad day, a really bad day that throws me back into that place of anger and fear.

Yesterday Sophie woke up with a nasty cough, its debilitating for her. But at the same time it is the best thing that could happen because without the cough helping her body get rid of the phlegm that phlegm would coat her lungs to prevent proper function causing lung collapse.

Her temperature was starting to rise and she was clingy and whiney which is not the norm for her. I started with breathing treatments and then her compression vest and we continuously repeated these throughout the day. She spent the day having episodes of expelling phlegm, it’s so hard to watch her go through that. She had a couple of bouts of drowsiness and turning blueish from lack of oxygen, each time it felt like my heart was going to stop. But I was able to get her breathing back to normal again.

I found myself crying a lot though out the day. When she starts having good days these bad days hurt so much harder because I am so hopeful for a miracle, that her body will become stronger.

Bedtime was the hardest. She was so exhausted but the cough would not let her rest, and as soon as I began to doze off she began to choke and by the time I jumped up and positioned her to clear her airway she had already aspirated on the phlegm. After cleaning her up and changing all the sheets all I could do was cradle her in my arms and rock her. And I cried, those heavy tears that have no end. Those tears that take your breath away, that come from the deepest depths of your soul where all the fear and pain hide. And after a long while when she finally settled down enough I laid her down next to me so I could hear her breathe and I prayed. I prayed over and over again, and I cried until I fell asleep.

Sometimes all you have to comfort yourself  is a good cry. Oh what I wouldn’t give for my little girl to be healthy. If I could take this disease from her and live with it myself I would in a heartbeat.

Harder than my reality… is their reality.

Today was a good day, Sophie is doing well and is the healthiest she has been in a very long time. We have bad days but recently they have been easier to control having all of her medication right here without having to wait for doctors appointments when there is a flare up. I feel like her doctor sometimes, I am definitely her nurse.

Somehow today though two of my kids brought up death. My teen son while out with me running a few errands brought up the subject and I don’t even remember how it started. We began discussing the natural process of being born, growing older and dying. Then it became a conversation about how our lives are not guaranteed and how unfair life is.

And then somehow the conversation shifted to Sophie, and I began to speak to him about how every moment with her is precious and that we must remember just how fragile her life is. We talked about the severity of her diagnosis and the reality that one day her lungs will cease to function and we will have to let her go. The tears flowed so painfully. He asked me not to talk anymore and we rode the rest of the way without speaking, just shedding tears and supporting that beautiful love we share for our girl.

A couple of hours later while hanging out with my younger son he began asking me questions about why we die, he is eight years old. It was odd, neither of them had been together nor discussed anything. I found myself again explaining the cycle of life and I made the difficult decision to talk about what the future holds for his sister. That was HARDER because he is so young and because I had to relive that so soon, again!

I explained to him that his sister has a disease that has no cure and that one day her body will get so sick that it will not be able to work and her body will pass away. I told him her soul will always be with God and when that happens she will then be watching over us but that all the love and memories will always live on through us.

He hugged me and cried. He told me he didn’t want his sister to die. He then went off to pray and told me secretly that he asked God to help doctors find a cure to her disease so Sophie could live a long life, like him. He came to me two other times throughout the evening to hug me and tell me he won’t stop praying for God to make her healthy. Each time I felt like I was withering a little more inside.

The thought of having to let my daughter go is so hard, but watching my children absorb the reality that their sister will one day be gone leaves me speechless. I don’t even know how to describe the heartache that watching their pain brings.

I had not even begun to deal with talking to the kids about this devastating truth but somehow it felt like the right time. My heart hurts, there is this deep heaviness that grows within me each day and it lingers in the depths of my soul just building. I know that one day it will become so heavy that it will debilitate me but I still try to live each day to the fullest regardless.

Each day Sophie learns something new, each day we watch her flourish more and more and her father and I enjoy every moment of her beautiful life. And in between those beautiful moments there are those moments that our eyes meet and the sorrow of what will come comes through without having to say a word, as if our souls know the magnitude of the loss we will have to fight to overcome.

Often we forget about the siblings. They suffer a tremendous loss and suffer in silence because it doesn’t seem a great as the loss of a parent but the reality is their love is powerful, their loss is just as great and we must do our best to prepare them, to support them and help them understand.

It doesn’t make sense, this beautiful child continues to defy the odds, she has become so much more than what doctors ever expected of her and yet each day her body is fighting an arranged fight. She fights to remain alive while her body fights to shut itself down. The doctors tell us they don’t understand how she is still alive but I can tell you why, her soul and will to live are powerful. She will not give up her fight until it’s time to go home and rest and until that moment arrives we will continue to fight for her and with her.

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.