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.

Love yourself, not your looks

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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.

 

 

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.

Emily’s Sweet “16″

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I’m a month late with this post but, better late than never.

My daughter Emily has talked about having a Quinceanera (Sweet 15), for many years. She was around 9 years old the first time she brought it up. In the Hispanic culture it is an important transition for a young girl  and her family to celebrate her fifteenth birthday. It is a celebration where a young girl transitions into being a young lady, or señorita.

We had planned on a beautiful ceremony for Emily for many years, but after Sophie’s birth all the plans we had changed. Having to give up our financial stability we had to learn to live life in a different way, without all the luxuries.

Over the last few years Emily has been more of a support to me than I could have ever imagined, especially in the first three years of Sophie’s life. In those years when I was isolated, where seeing the sunlight was impossible on many days; Emily was there. She was a mini me, almost immediately she learned to jump in and clear her new-born sisters airway when she would be suffocating. She helped change diapers and would rock her sister to sleep, and in those dark moments when I couldn’t see past the darkness she was there. Emily was there to take her sister so that the baby would not absorb the defeated feelings I had.

She was there, through the laughs and the tears. She made sure she took a ton of pictures with the other kids so I wouldn’t miss those moments. She was there. And I would not have made it through some of the most difficult times of my life without her. My beautiful Emily.

And so, somehow with our move back to Florida the idea became a possibility, and then a reality. Thanks to some family members who volunteered amazing efforts we were able to give Emily that celebration she so longed for and deserved. I got to perform her pre-party photo session (one of my hobbies), and I got to make the cake and even cater the entire event. I even went as far as to have Emily share the father daughter dance with her brothers and I made a long embarrassing speech that had the entire crowd laughing and cheering.

The day turned out more beautiful than we had imagined, it was a day to remember. We were able to give her the dress she wanted and there were over a hundred people there to celebrate with us. More friends than actually family but most of my friends are my family. I didn’t invite any of my husband’s with the exception of Emily’s godparents because my husbands family have never had any interest in being a part of our lives. And my family, well let’s just say it’s the last time I extend invitations to a few many.

In the end the ones that mattered were there and it was Unforgettable!

 

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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

32 Pounds!

32 Pounds is what Sophie weighed today at her checkup. I was so excited! Dr. Nieves gave me a huge high-five. Keeping weight on this child has been such a challenge, seeing her maintain her weight and steadily increase is such a relief and a blessing. She is 3% for weight and 10% for height on a typical child growth chart, that is awesome! She is on the charts and has remained there, huge win for us. Stronger Sophie = Stronger Body = Better chance of fighting off bacteria. 

I am a little behind on doctors appointments, life has been so busy and I was just putting them all off, honestly; I just needed a break from it all. Sophie is doing really well, we are keeping her stable with all her meds and with isolation. As hard as it is keeping her home all the time we are adjusting, knowing it is literally keeping her alive is enough that we just moved on and just put that whole reality out of mind.

Dr. Nieves was there for my daughter’s sweet sixteen several weeks ago and spent the evening observing Sophie interact with everyone and is astounded at her developmental progress despite all the challenges Sophie has had to overcome. It’s so awesome to have the support of such a wonderful human being, and we are so lucky to have her as the head of Sophie’s medical team.

The only issue we came across is that now that Sophie is growing and getting pretty tall at almost 42″ her scoliosis is becoming visible, which means we will have to watch it closely. It’s hard to swallow that my five-year old already has noticeable scoliosis. Heart breaking, DAMN Cri du Chat Syndrome! But we will take it one day at a time and do whatever is necessary to help her and give her the best treatment possible.

At the end of the day the good news out weighed the bad and I will take it as it is. Nothing will break us or our positive attitude for life.

CLICK HERE For a short video of Sophie in the waiting room today, she is doing phenomenal!