I’m blogging again!
I am blogging in a new space and in a new light. If you are interested in following my journey once again click the link below to take you to my new space. I look forward to reconnecting.
I’m blogging again!
I am blogging in a new space and in a new light. If you are interested in following my journey once again click the link below to take you to my new space. I look forward to reconnecting.
I started blogging to document my journey as I learned to overcome the obstacles that came with being a parent to a child with special needs and terminal illnesses. My blog slowly evolved into so much more. Everything in my life changed from my way of life to learning to accept myself and overcome the many challenges that came my way.
Over these last five years I have experienced some immense love and support, but also some overwhelming negativity from those who did not understand my journey or were just being hateful.
This blog enabled me to help other parents also struggling with being in this new world and helped me share information and educate many on my daughter’s syndrome and of the many illnesses she lives with.
This blog has been my outlet and a place of reflection for self growth. In the last year I have made many changes as I mold my life to make room for more emotional growth and peace. I have taken steps to discontinue many associations to help me fall into my own normalcy without living in chains that consume me or are constant reminders of heartache. I have reduced my time on social media and electronics significantly and am reconnecting with the world around me as well as enjoying a new-found appreciation for privacy in my life.
It has been a great ride, but all great things must come to an end. And with that It is time to say goodbye! I want to thank all of my followers for your support through out these five years, your support and encouragement have only fueled my love for writing.
Feel free to enjoy my posts, you can get caught up on some posts or if you are new to my site read a bit about my journey. It just may help you see the world in a different light.
I would not have made it this far without you all. Thank you for being a part of my journey!
It is hard to believe how I have evolved as a mother and as a woman, I always thought about the person I wanted to one day become but the years passed and I felt as if that person was a fictional character.
My difficult childhood took a toll on the person I wanted to become and there was a point in my life where I had given up on my own growth. But with the birth of each of my children I rediscovered myself just a little more, each one of my children are like pieces of the puzzle of my life. Each one of them taught me a little more about myself and I was able to see glimpses of that person I dreamed of becoming. The biggest lesson my children have taught me is the endless amount of love you can feel for a child, no matter how old they are. There are no words to describe the love I feel for them, it is immeasurable. To know and feel that you would trade your life in an instant for theirs without a second thought or fear is a grand experience.
Sophie’s birth changed me drastically, my precious girl with her mere existence was a really big piece of the complicated puzzle of my life. Her birth left me completely exposed, no more barriers, no more hiding; it was time to face life. Who was I? Did I truly know myself, or was I pretending to be someone else because I had no idea who I really was. Her birth lead me down a path of emotional self-destruction, then a healing phase and what followed was an awakening of my true self.
Sacrifices were made to give Sophie a fighting chance at life, but little did I know just how hard all of those changes would be for my family. The reality was much more scary than how I thought we would make it through. But we have pulled through and I am stronger than I could have ever imagined I could be. And in giving Sophie a voice I found my own. I discovered my inner self and realized that I could speak up, I could say no and close the doors to toxic relationships. I didn’t care anymore what others opinions of me were, it is my life not theirs.
I learned to fight for my family and for myself, I came to learn what true friendships are and have a new-found respect and appreciation for life. I finally realized that I deserve more, and I was finally able to accept myself for who I am. I closed the door on many relationships including those with family members who only used me for their own agenda and as there guinea pig for spreading ugly lies because they thrive off of gossip.
I am now able to separate myself from groups that I felt did not support my needs or feelings despite my once dedication to them, I don’t need any of these situations that bring negativity into my life. I am now able to let them go without the need for explanations or apologies. I found my freedom in this new-found strength. A freedom that opened my eyes to reality, that not everyone is true or cares for you. I was always very gullible, but I am not anymore.
I found my strength to fight, and my voice to stand tall, I found the strength to love myself with all my flaws and be proud of the woman I have become. And I finally realized that I have become that woman I had always dreamed of and more.
My children fueled my desire to become greater, and they taught me the meaning of true and unconditional love. My determination to give my children the best and happiest life possible is what helped me move past what was limiting me.
So when I am faced with obstacles and I feel like the world is up against me I can reflect on how far I have come, how strong I truly am and I can keep moving forward. Being a mother has been the biggest accomplishment of my life and it has set the stage for me to want to grow more each day.
I would not be who I am without my children, all six of them!
I am stronger today because I am their mother.
Over six years ago when I received my daughter’s diagnosis, I had no idea how that moment would change my life forever. My newborn baby girl was very sick and she had this rare genetic disorder that would most likely not allow her to live passed her first two years of life. And if we were lucky enough that she would survive she would not walk, talk or have the ability to have a productive life.
I focused on her diagnosis for quite some time until I began to realize it was not just her diagnosis, it was our diagnosis. This diagnosis took hold of my family’s life and slowly begin to break us down, it led to fear and down a road of little or no expectations. And it did because I allowed it to.
I am in no way an expert of being the parent of a child with different abilities, I continue to learn each and every day and one of the things I have learned is that just as our children are all different in their own ways so are we in the ways that we cope with our realities. My way of coping was acceptance and letting go.
When I focused on a diagnosis it hindered my expectations of my child, it limited her in my mind and that was unjust. Yes, my daughter has a rare genetic disorder, a terminal illness and she is developing skills at a different pace than most of the world but that is OK. I may never understand why she needs to spin every plastic bowl in my house constantly or why she needs to chew my furniture or why she pinches or bites when she is excited or overwhelmed. But I know that she is happy, that she is learning and that she is flourishing in her own way and for that I am grateful.
Today I find myself surprised at the way some are astonished with my daughters progress, I find myself saying to people “of course she understands and that she is not a baby anymore”. I assume it is because I see her for who she is, a six-year-old little girl, my little girl who is growing and learning against the odds.
People constantly ask me how I can function with the devastating truth that my child has a terminal illness or that she is not typical. The truth is that it is not easy but I don’t think about it. I live for today and tackle the obstacles we are faced as they arise. Tomorrow is never promised to anyone, despite whether a person is sick or healthy. If I allow fear and heartache to debilitate me than I am not only giving up my life but I am affecting the lives of my children and everyone who surrounds me. So I choose to just live with no strings attached to weigh me down.
This past Saturday I allowed Sophie to play outside on her trampoline on the patio for a little while, when dinner was ready I called her in. She stood there and stared at me for a moment, pondering what I was saying and what she wanted to do. She then walked up to me, closed the french door in my face and climbed back into her trampoline. She had a big smile on her face then waved “bye” at me. These are the moments I live for, the moments that she shines through. The moments that validate that letting go of the pain and labels enables me to fully understand and enjoy the value of her life and our journey.
Today Sophie can walk, she does not speak other than the occasional mama and the attempts at vocalization but she can communicate. Speaking is not the only way to have a voice and while I once believed that to be the only way I would ever understand my child I see now that those were the limits I was setting for her and us. Sophie does have a productive life and her life is essential to all of us who love her.
I had not realized how much like me she truly is, strong-willed and defiant. She is a fighter, she is kind and loving. She has taught me more in her six years of life than all the years I had lived before she blessed us with her arrival.
We have our diagnosis, we were given our labels. But I have chosen to move past it, I refuse to live within the confines of labels and little expectations. The world is a rainbow, I will embrace the different colors around me and let them shine, in the end life is what we make of it.
Justice for Victoria Petition
To appeal to our State Agencies to follow protocols and place children with their biological families and not in the foster care system when there are family members ready, willing and able to care for these children.
Do not allow these entities to make decisions not based on the law but on their own personal decisions. That is NOT JUSTICE!
You cannot allow our rights and the rights of these children the state is supposed to protect be violated. Do not allow a child be taken away from a family, and given to another because our system failed.
The Palm Beach County Court System & the Palm Beach County Department of Children and Families and any and all state and judicial entities that uphold our laws.
Corruption sadly, is everywhere. Shamefully those in power take their positions to the extreme and develop a God-like complex in which they truly believe the law is in their hands to do with as they please with no consequence.
Well it is high time we (the people) say NO to this Injustice.
My sister Jessica was struggling with substance abuse and in 2013 her daughter Victoria was removed from her custody days after birth and placed in the foster care system. Most of us in the family had no knowledge of this until it had already happened, I didn’t even know my sister was expecting another child until all of these events unfolded. For the past three years I have had custody of my niece, my sister’s eldest child. My sister and I came to an agreement to allow me to take custody of my niece so that we would prevent her from placed in foster care as I was able to provide her with a safe, stable and healthy life.
When Victoria was 3 months old my sisters father Carlos, Victoria’s biological grandfather made his first attempt to contact the (DCF), Department of Children and Families to have his granddaughter placed with him. He complied with what was requested of him and was eager to welcome his granddaughter home.
But despite complying with the state and being told everything was in order and that the home visit was approved the case grew cold. The months passed and the case worker assigned to the case began to act strangely. Carlos and his wife grew worried and began contacting supervisors and I suggested they hire an attorney. The response to them from the DCF was unprofessional, they were rude and had nothing but excuses and would not be clear about what was happening. By the time they made headway and were given access to visit my niece Victoria was 11 months old. It took the DCF, 8 months to allow our family to see Victoria who had been in foster care all that time. And yet they could not prove without a reasonable doubt that Carlos and his family could or would cause harm or endanger Victoria in any way.
As soon as the visitations began we were informed that the DCF would be petitioning to have my sisters parental rights revoked so that the foster caregiver could adopt my niece. And that was where the case spiraled out of control.
Unfounded accusations began to surface, the foster caregiver would cancel visitations at the last minute, and her demeanor was rude towards our family and possessive toward my niece. The caregiver would snatch Victoria from my family’s hands and once even raised her voice as she snatched my niece and stated “Give me back my baby”. It was very obvious that something was very wrong here.
At the court hearing my sister’s defense lawyer as well as the lawyer Carlos had representing him could not get a word in. It was pure prejudice, the more I witnessed the more it became apparent that this was a personal attack and had nothing to do with Victoria’s best interest.
The original case worker was removed from the case but not before she issued a threat to Carlos and his wife that she (the caseworker) was going to do everything in her power to make sure Victoria would never be placed with her biological family. And despite all the complaints to her superiors this case worker was never investigated for her threats, it was covered up like the many other facts that are associated with this case.
Time continued to pass and the situation became more aggressive with each passing day. This has been an emotional disaster for all of those involved.
My sister proceeded to have another child December 2014, a little boy and he was also removed from my sister’s custody because my sister was still struggling with her addictions. But this time they were in Orange County, Florida, where Carlos lives when this happened. The way in which this particular case was handled was the way Victoria’s case should have been handled.
The next of kin family relative immediately stepped up to have the child placed with them, that was Carlos, the biological grandfather. A home visit was performed and a court hearing was attended where the child was placed with his maternal grandfather and family, and this is where he has been for the past 8 months with no incident. He is loved, happy and healthy; he is exactly where he should be and where Victoria should have been placed from the beginning.
One of the most compelling truths of this situation was that the Orange County DCF, did not try to take my sister down. No. They are helping her, placing my sister in a court ordered rehabilitation program where she has been for the past 6+ months. Where she checks in to the courts weekly, goes to counseling and even attends parenting classes. And has visitations with her son which are safe and productive.
The Orange County Department of Children and Families are doing what their mission is to do, to keep families together. To help those in need to regain their healthy lives for the betterment of their own lives, their families and our communities.
Despite all of this progress the Palm Beach County Court Systems and Department of Children and Families refuse to allow Victoria be placed with her family. They refuse to allow her the right to grow up with her brother and sister and the rest of her family.
Victoria is the first child placed with the Caregiver, this person knew that becoming a Caregiver in the foster care system is temporary placement; it does not guarantee her an instant family. We cannot allow this to happen, we cannot allow caregivers to fight a family who has a legal right because they were not able to detach themselves from a child.
The Palm Beach Court system nor the Department of Children and Families, directly Michele Marchan who I have been in contact with have been able to prove that it is not in Victoria best interest to be reunified with her family. This case has changed its direction from being what is best for Victoria to what is best for the Caregiver, and we must stand against this injustice.
How has America allowed this injustice? If you look it is happening all over the US, this has to STOP. They cannot continue to take children away from their families, not when the child has the opportunity to remain within that family unite where they will be in a stable environment, healthy, safe and loved.
We cannot allow people who work for the government, state or county do whatever they want. Here is a child who has family and her family is fighting hard for her but the system wants to give this child to someone else, just because this person wants to adopt her. What about the family that has been fighting for her all this time?
They argue that this action of denying Victoria her right to be with her family is in her best interest. If they truly cared about her best interest they have made family reunification a priority as it is what they promote. They would not deny her or her family the right to be together.
Please join my voice, it only takes one person to make a difference in the world but think of the impact we could have when we are many voices!
Join me in rising up against this injustice, help us bring Victoria home. This is America, land of the free and where justice always prevails. I want to fight for justice, how about you? Will you join me?
I am taking this public, to every outlet of state, every organization and media available that is willing to help us! I appeal the Judge to please look at the evidence in this case and allow Victoria to return to her family where she is loved, and where she will have stability and be healthy and happy always.
Our goal is to bring Victoria home and to educate our society so that families know they have rights and that justice will always prevails.
#UNITE WITH ME
#JUSTICEFORV on Facebook
Sign our petition!!!
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.
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.