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!

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.

How do I go on?

How do I go on knowing what the future holds? In the last couple of weeks I have learned that my precious girl is fighting against the clock of life, her time is ticking away faster than we could have imagined. I’m not ready, I don’t think I could ever be ready.

I’ve written about Sophie having Cri du Chat Syndrome and with it developmental delays but that is  nothing in comparison to the sickness this syndrome has caused my little girl. Because of this syndrome Sophie was born fighting for her life, her lungs and neurological system were very immature despite that fact that she was born just three weeks before her due date. Heart and liver complications, aspirating, constipation, reflux, hearing loss, sub mucous cleft palate, microcephaly and the list goes on and on. But the worst thing that this syndrome caused was a rare lung disease called PCD, Primary Ciliary Dyskenisia (click here to read about the diagnosis).

PCD has been the primary cause of Sophie’s sickness, all of her choking, her sinus disease and all the respiratory infections that have plagued her little body. Sophie was only diagnosed with this disease last year in June 2013. Now that we know she has PCD we are treating her to help slow down the deterioration process but so much damage has already been done. In only a few short years the horrific bacteria that have invaded her little body have begun to destroy it and in the process essentially taking her life slowly.

I was told I need to prepare to let go of my child, possibly sooner rather than later. How can I do that? How is that even possible? How can I continue to live my life without being angry or bitter, without losing my faith. Honestly, I do not know. I look at my beautiful innocent child and all I see is pure light and love, I look forward to her amazing smile and energy everyday. How do I go on knowing one day she won’t be there to greet me when I wake up.

I walk through the door everyday and she runs around the living room in extreme excitement knowing that I will lift her up and fill her with hugs and kisses and her amazing laugh fills the room with delight. How do I go on knowing one day she won’t be there?

It’s the smallest of things like making sure there is always avocados, bananas and vanilla ice-cream for her to eat; making sure she has her favorites is something that runs through my mind each day. How do I go on knowing one day I won’t need to bring her home her goodies.

It’s everything about her, even in those moments when she is on sensory overload that she cries and jumps until she gets the car ride she so desperately needs to calm herself. How do I go on knowing she won’t need a ride one day?

How do I go on and try to imagine my life with out one of my children? It is a cruel reality many of us are forced to live in. But, somehow I must go on. I must learn to move forward and one day I will wake up and I won’t have a choice.

But until that day comes I will live each day to the fullest, I will love my precious little girl like no other. I will fight for her till the end of the heavens if I have too. I will go on because I cannot waste one precious moment wondering how or why?

I cannot let this break me. Life is unfair, bad things happen to good people everyday and it’s no one’s fault, it is just a part of life. All I can do is cherish each day and do my best to keep my little girl as healthy as possible. All of a sudden the things I was heavily dwelling on just a few months ago like her not being able to go to school or able to go to a birthday party seem so insignificant to me. Those things I was protecting her from will come back to get her anyway.

I never thought my life would lead me down this path, I would not wish this heartache on anyone. But I will tell you that those who have had the pleasure of meeting my little girl and being a part of her life will tell you there is something about her soul that fills you with love and peace.

For now I will pray, I will be grateful she is still by my side. I will not let anger destroy me, nothing will taint the beauty of her life. A beautiful, perfect soul. And now and forever I will be the lucky one to say that she is my daughter.

Kindergarten

Sophie is five years old, these have been some overwhelming years. What an amazing blessing she has been in my life, I love to watch her just be herself, and I bask in her light. I never imagined this child whom I was told would never learn or possibly even survive would not only surpass what the doctors claimed her limitations would be but would be such an amazing individual.

Being five also brings with it the commencement of what should be the beginning of Sophie’s  primary education. We had hoped that she would have the opportunity to have that education in a school where she could share all of those new experiences with other children. But as I have learned there are some things in life we just have no control over.

When the doctors prohibited us from even considering school I was devastated. For a long time I was afraid of the idea of sending her to school. I was afraid of what someone might do to her and I feared that she would lack the ability to communicate with me if something went wrong. But, in the last two years Sophie has blossomed in so many ways, especially with social interaction that it became so obvious that she would flourish if given the opportunity to attend school. Sophie loves being around people especially other children and while her development is delayed it does not inhibit her ability to engage.

During this last year I have tried to let go of those feelings of immense sadness knowing that Sophie will always have to be homeschooled no matter what. For several months I thought I was ok until I began to see photos of other children her age graduating pre-school and getting ready for that huge milestone of beginning Kindergarten. I haven’t even had the emotional strength to get her Pre-K cap and gown pictures taken.

As the days approached that day, the day she should be starting Kindergarten my heart sank a little more each day. I see her grab her shoes and gear up to leave the house but she does not understand why she cannot be included in all of the excitement. And it’s not so bad now because her little brother is home with her all day so she has a playmate. Next year her little brother will be in preschool and Sophie will not have that companionship, that day will be a very sad day. I worry about how she will adjust being alone for hours on end with no one her age to interact with.

To make matters worse school started three weeks ago and I am still dealing with the school to get her homebound services started. I have to say The Palm Beach County School System is a joke. Children with Special Needs are disregarded, their education is not important. No one does their jobs, no one returns phone calls and parents have to make big stink in order to get someone to do something.  it’s truly awful.

This whole situation is just very saddening and as much as I try to move on this subject has become very heavy on my heart.