Tag Archives: special needs

Dear Sophie, you are 6

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Today I want to take a moment to celebrate Sophie on her 6th 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 6th BIRTHDAY NINA!!

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End the Word 2015

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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!

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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!

How do I go on?

DSC_0028_fotorHow 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.

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Kindergarten

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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.

Out of mind, it’s just impossible.

Recently I started trying to move on from my harsh reality, thinking that if I put all the awful things I have to deal with out of mind that I could somehow function better. That, somehow the breath-taking pain would not be so overpowering. I was wrong. It’s not possible. Moving on from the focus of having a child with special needs is really hard because those “special needs” affect life’s everyday functions and as much as I can try to make it seem as if it’s not there and it’s no big deal the reality is that it is there and it is a very big deal.

Sophie has made huge strides in the last year cognitively, she is amazing us everyday. She understands so much and is so present in so many ways, learning to participate in daily functions with more ease. One of the biggest challenges I am facing with her right now is the fact that she wants to participate in those functions that she sees everyone else incorporating in their everyday. She want’s to go outside and play, every time we grab our shoes or keys she’s at the door. She knows that she needs her shoes to go out so she runs to the closet to grab her shoes and takes them to whomever is around to get them on her.

The challenge is that she does not understand why she cannot participate in these daily functions. She doesn’t have the cognitive capacity at this moment to absorb the fact that she could die if she is exposed to certain bacteria. She just knows that she wants to do what everyone else does. And she is determined, she will stand at the door for hours if necessary to get her point across. It ultimately ends with a twenty or thirty minute car ride because I do not want her to feel completely left out.

How can I keep these things out of mind? When I try to coordinate something for my family my first consideration is how can we include Sophie and many times it’s just impossible. Recently I have had to turn down birthday parties because they are held in places that are considered death traps for Sophie, (check-e-cheese, for example). It’s not fair to my other children but there really is no other option than to decline these invitations.

And then there is her health. I put off doctors appointments for some time because we just needed a break, she has been doing exceptionally well except if we skip a day of antibiotics. She has gained weight and looks amazing but the reality is she is a sick child. I tried to avoid thinking about that and then I took her for a follow-up Pulmonary visit. The visit was good, the doctor was happy with how she looked physically and her lungs sounded pretty darn good despite all she has to deal with. This is thanks to her compression vest, I love that machine.

Then we talked about that dirty little disease that could take my daughter’s life, PCD. We talked about how important it is to begin to track the deterioration process and we will have our first comparative scan of her lungs in a few months on our next follow-up. We talked about how critical it is to slow down that deterioration process because if she develops Bronchiectasis there is no going back. The only thing that would save her would ultimately be a lung transplant and the HARSH reality is that this world discriminates against individuals with special needs and no one would perform an organ transplant on an individual with special needs because they are not deemed productive members of our society. As disgusting as it is to deny someone life it is reality. I could see the sadness on her doctors faced as we discussed this dirty truth.

My truth SUCKS. My reality SUCKS. Trying to live my life with all of this out of mind is impossible, I try my best to hold it together but sometimes I just have to give in. I have to scream and cry and feel Just to find the strength to keep going everyday.

Moments like these I hate Cri du Chat Syndrome, because this disorder is the cause of this lung disease and all the other medical complications my poor innocent sweet girl has to live with.

Sophie

Why I pulled the plug

DisconnectI recently decided to deactivate my Facebook page and I was immediately bombarded with messages from friends and connections wondering why? Well, there are several reasons I decided I needed to unplug.

Time. Let’s face it having certain social connections take up alot of time, time I cannot afford to waste as my days are very limited with all I have on my plate. I love to read articles which are always being shared or situations where I want to offer advice or lend an ear, but I find myself being drawn in and it affects how productive my days can be.

My kids. Now that I am disconnected while I barely have free time I don’t feel the need to constantly check my phone. Even when my messages or emails start chiming in I can put my phone down and give my kids those extra 5, 10 or 15 minutes because I am not glued to my devices and those minutes make a world of difference. And at the same time I am teaching them that time for them is more important that social media.

Emotions. I get too emotional in too many situations although they may not be my own I can feel the pain and recently found that some situations from others literally took my breath away. I found myself unable to pull myself together at one point for the pain I felt for another, I could not breathe and found myself crying a heavy endless river I could not control. It is a haunting feeling. I just can’t put myself there right now, I have my own fears and I don’t want to find myself in an emotionally compromised situation. I must stay in control as it is the only way I can get through my days.

Normalcy. While I love my special needs community I have gotten to a place where I just want to live my life without being reminded every second that I have a daughter with disabilities. Yeah she has special needs…so what? I just want to live my normal with out all the reminders, life is hard enough as it is to have to face the constant reminders of the struggles I face, have faced and will face in the future. I’m kind of sick of Cri du Chat Syndrome right now and PCD and Sensory Processing Disorder and all the other dozens of medical diagnoses I deal with on a day-to-day. I’m over it.

Privacy. I have realized I do enjoy my privacy, I used to share everything going on in my life and now I just don’t want to. I am surrounded by great friends and family and those who make the time and effort have the privilege of sharing my life with me. If you don’t make the time or effort for me then you don’t deserve to be a part of my everyday, period.

College. I start college in a few days and want to keep that my priority without any added distractions to my already busy days, I already have enough. I am going to bust my but to make my dreams come true, that means it is time to put everything out on the table and set my priorities in order.

Quiet. And the peace and quiet that accompanies the lack of social media involvement. I am one to read something and think about it for hours talking to myself subconsciously causing my brain to have no rest and emotionally draining myself. Now I have quiet moments where I can have a break between thoughts where my mind is at peace, I’m even sleeping better.

The world we live in travels a mile a minute, there is no sleep or quiet and everyone is on the go constantly but I have realized that is not how I want to live my life. Maybe I am just antiquated but I don’t want to be busy all the time. I want time to play, sleep and dream. Quiet to clear my mind and say a prayer without a mass of jumbled thoughts push its way through to destroy my concentration. I want to watch my kids play outside without thinking about video games and ask to play board games or watch movies together instead of sitting in their rooms on their phones. Disconnecting from one social media outlet is just a start.

For now I am very happy I disconnected, I am more at peace than I have been for a long time and I want to keep it that way.