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Pulmonary Update June 2015

I took the day off of work yesterday to take Sophie to an ENT and Pulmonary follow up. Her doctor’s visits have become more spaced out as our treatment plan for her has been successful. She is basically in a bubble. She cannot go to school and we have to limit exposure to the outside world drastically, I do take her on a grocery outing with me once a week if she is having a good day. But if she is showing signs of a struggle she cannot go out or her symptoms take a turn for the worst very quickly. And even these small outing can cause a disaster if the weather is not agreeable.

So we headed out to the ENT for her follow up and we were lucky to have a good visit, we discussed her recent sinus infection episode which was pretty bad, but decided that despite that episode her sinus disease has been controlled nicely.  One or two sinus infection in six months was really good when you consider how she struggled in the past when she had them for months at a time with no breaks in between. So we will be back in six months if all stays well unless we need some back up medication to add to her daily regimen which could happen but we remain hopeful that it does not.

Following that visit was the pulmonary visit which I’ve dreaded since we received the PCD (lung disease) diagnosis. Last week Sophie had x-rays done as the doctor wanted to start tracking the deterioration process of Sophie’s lungs.  It was hell to even get the scans because she fights you every step of the way, and that visit to have that done was emotionally exhausting.

The scans were not good, the doctor stepped out at one point to look at the x-rays to be sure that the report was accurate. Her bronchioles are inflamed, this could be the start of the deterioration that we fear. I could see the sadness and concern in the doctors eyes, he is a wonderful doctor and truly cares deeply for my precious girl. I felt like a truck hit me at that moment, I was not expecting this news.

The hardest thing I have had to do in my life has been to learn to live my life with the difficult truth that I will one day have to say goodbye to my child.

He began to talk about the inevitable truth and reality of what will happen to my child as her lungs deteriorate. What we will do as we fight to try to slow down this process and how we must prepare for the worst as there is not much that we could do to slow it down and there is no stopping it from happening. DAMN lung disease, how I HATE you!

Words could not describe the fear that consumed me and continues to consume me, I held my composure as long as I could almost caving as we continued our visit. He took the time to talk with me, honoring everything we have done to help Sophie have the best life possible. And after that long session he stood at the door just admiring my girl as if not wanting to turn away. The sadness in his presence almost made me lose it, but I held on just until I made it out of his office and then I caved.

Once I strapped her in her car seat I sat there as cried hysterically for a good five minutes and allowed all those emotions to pour out of me before I called my husband to share with him the newest update. His silence to all the news was powerful, this is a journey we must travel together and staying strong is not easy.

I try not to think about it, that is how I get through each day. But each time I am forced to face the truth I find it harder to regain my strength. Today is hard, I just can’t hold back the pain and finding consolation in my faith is harder than ever.

The injustice of life is just too hard for me to understand.

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Mothers Day 2015

I truly miss writing but my life has undergone many changes and I am at a place which spares me no free time but I am working on making a comeback to my blog. I miss the writing but I have learned that there is a level of privacy I did not appreciate before that I now incorporate into my everyday life.

It is the simplest of moments that fill your heart and today was a day full of wonderful simplicities.

I was up at the crack of dawn since my internal clock doesn’t have a clue that it is the weekend but it was totally ok because I enjoyed the little while of quiet it awarded me. When my husband woke up we decided to head out for some Cuban coffee, our weekend treat. Sophie decided she would join in on the outing so we made it a morning of grocery shopping. Sophie was so happy to be out of the house, it is so amazing to see her simple happiness. She looks out the window while we drive and I do nothing but wonder what it is that makes her smile with so much happiness, the sun? Or maybe it is the trees or the clouds, who knows but I know I would love to feel her happiness even if just for a moment. Pure perfection.

I got to buy Sophie a new pair of sandals which she wore all day long, and Tristan got some new shoes too. They were both so excited, what a wonderful feeling it is to watch my children and know I fulfilled my biggest goal in life. When I became a mother all those years ago I vowed that I would do my best to give my children the best life I possibly could. I vowed that they would never go without, and that I would fill their lives with love and happiness. When I look at my children I know that I have fulfilled that goal, it is the simplest moments that are the most transparent.

I decorated a few cakes, ran a few loads of laundry and sat and chatted with the older kids a while. I had a really long shower which followed with a bath with my favorite girl. Nothing like sitting with her in the water, running my fingers through her curls as the conditioner worked its magic. Watching her giggle as she put her hand under the running water and basking in the moments I thought I would never see with her.

I gave myself a pedicure and even found and extra hour to blow dry my hair. To most this in not a big deal but for a mom who leaves the house and doesn’t come home for eighteen hours. A mom who goes days without seeing her toddlers awake. A mom who leaves for work and comes home to shower and sleep to wake up and do it all over again. A mom who misses the daily activities of her home this was a very pleasant treat.

In the evening the hubby made dinner as I sat out on the patio with the kids while they played just relaxing with my glass of wine. And I even got to fit in a blog post. Fabulous!

Some may think this is a boring and even uneventful day but for this mom, this was a perfect day!

Mothers Day is not one day out of the year, it is everyday. It’s not about the gifts at all it is about so much more. This was the first mothers day in many years that my husband gave me a personal gift and if he would not have I would not have been upset. He took a necklace he had given me for my 16th birthday and had the name plate removed and added a beautiful crucifix. He used something old to recreate something new, something to reflect who I am today not who I was twenty years ago. A very powerful gift for me, now I have a symbol of my faith with me always.

Who I was yesterday is not who I am today. I once felt as though gifts were important that was back when I was a Diva and sported a lot more jewelry and fancies than I needed to have. After Sophie’s birth our life began to spiral out of control, we were faced with so much heartache and were learning to accept the loss of the life we had known.

We found ourselves completely broke all of the sudden. All of our money gone in medical bills, doctors visits and medication for our little girl. I gave up my job to care for her full time and, my husband got laid off and with that also came a run of very bad luck.  We began to see life with a new perceptive. Those things we once valued and thought were important were not as important as we once thought. Slowly we began to sell it all, including my diamond wedding ring that I LOVED and waited years to have. But my children needed to eat, we had bills to pay and my family was worth more than any material item we could possibly possess.

Today with a new-found appreciation of life that this journey has taught me I could say that I had a wonderful Mothers day, I couldn’t have asked for more.

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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 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!

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

DSC_0093We 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.

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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.