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!

 

 

Loving School

When I was thirteen years old I dropped out of school, I then went back at age fifteen to only drop out again when I learned I was pregnant with my eldest child. After his birth I was motivated to go back and get my diploma because I wanted to set a good example for him. As the years passed I always had regrets about dropping out and not having had the full-time school experience. And soon I would find out it was more than just the experience I felt I missed out on, I would soon learn my regrets were more about my direction in life and the bad choices I made at such a young age.

Seventeen years later…..

I am on week three of College for my AAS in International Baking and Pastry Chef and possibly something else right after that. I am absolutely loving it! I can’t believe it took me so long to get here, but I am so happy I just did it. No more excuses. It’s kicking my butt intellectually having to focus so much but it is so worth it.

For years I had talked about opening my own restaurant, being my own boss and creating beautiful dishes. As my passion for food grew I found a new niche for baking and pastries, while I for some crazy reason am not compelled to eat the sweets I found immense satisfaction in creating dishes for others. It was hard to pin point what direction I really wanted to take my life in; because I enjoy so many other activities like photography, design, event planning and writing among other things. But in the end I realized the kitchen is where I want to be and I made it happen.

My visions are becoming more and more clear with each day, and now my ideas and plans are expanding and multiplying. It’s only been three weeks and yet my mind is filled with fantastic new goals and visions for my future. I know I will be successful, I now have no doubt. It will take a lot of hard work and dedication but I know that I will succeed. This one huge step towards my dream was all I needed to set into motion all the wonderful things my future holds.

I have an awesome Chef Instructor! He may be a little OCD, but so am I. Maybe that’s why I like him so much, he is thorough and engaging and brings out the best in everyone in the class. My classmates work well together we have become a great team. I am not only learning, I am having a blast at the same time!

This was my group tonight in lab, we made biscuits. We had a ton of fun!

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My normal

Sometimes life throws us in different directions, sets us on a path we never even considered taking. For me the game changer  was Sophie, my precious little girl, born with Cri du Chat Syndrome. I’ve talked about how hard it has been to adjust to my new life as a mother to a child with special needs and about my struggle to find my balance. It wasn’t until recently when I began the journey of finding my true self, without the mom or wife in me that I began to understand myself better. There were changes I began to make that would lead me to the place that I am now.

Letting go of the fear that my daughter can die was probably the hardest part of my emotional growth and one of the hardest fears I had to overcome, and although those fears are still somewhat present they no longer consume me. And in the process of letting go of those fears I found that I needed to pull away from certain connections, and so I did.

I found that being reminded that my child has a disability, constantly, was not healthy for me. Sharing her journey is important because through her I have had the privilege of helping others come to terms with acceptance of a loved one with special needs, and also because of her medical complexities she is a superstar in the medical field. There may one day be answers to questions that today go unanswered because of Sophie.

All that being said I don’t want to turn on the computer and see “SPECIAL NEEDS” plastered everywhere. Yes I want to raise awareness but I’m tired of the labels. I’m sick of doctors appointments and constant reminders of what my daughter can’t or is not supposed to do.

Instead I just want to live “My” normal life, I want to watch my daughter laugh and play and learn without the reminders that society does not deem her as an equal to those of us considered “typical”. Especially when the reality is she is stronger and has more determination and dedication than most of us. She fights to live and learn everyday despite how hard her body tries to shut it all down. I don’t want to think about how portions of her brain do not function, instead I only want to focus on the fact that is learning more and more each day.  I don’t care if it has taken three years to reach a milestone, the important and most valuable lesson is that despite the odds SHE DID IT and IS DOING IT!

All I want to think about is how beautifully she IS flourishing,  her brain is working. She knows enough to stand on her tip toes and try to look through a hole. She can use her hands to respond to you if you ask her if she wants something. She can hold your hand and take you to an item she wants. She can tilt her head back when asked in the bath tub when her hair is being washed. She can give you hugs, kisses and holds your hand, waves bye and will call me momma if she wants me. She will run and stand by the door at the first sight of me grabbing my shoes, keys or purse just waiting because she wants to go with me. There is truly so much I would love to brag about right now because I am so proud and because I see Sophie  for who she is, my daughter. But this would be a post with no end so I will keep it short. She is here, she is present, she is growing and learning. That’s enough.

At first I felt a little bit of guilt when I realized how much at piece I was without all the reminders, I felt bad thinking I wasn’t doing my part on raising awareness but I am. I am my daughters voice, I have this blog and I educate anyone whom I have the opportunity of educating. I may not stand up in front of thousands but I do enough and wanting the privacy and disconnect to move on to a better place is ok. If I am at peace and happy I can be a better mother, and that is my ultimate goal.

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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.

 

 

Making my dream come true!

10507799_316757568493654_1370423531_nThis has been some year for me, I have truly found myself and allowed myself the freedom to truly accept what direction I wanted to take my life in. Since I was a teenager I have dreamed of owning my own business, anyone who know me and especially those close to me know that I am gifted when it comes to the food, I love the kitchen. The kitchen has always been my favorite room in the house, I love everything about it, from the dishes to the stove with the exception of cleaning it. I hate cleaning the kitchen!

For a long time I talked about opening a restaurant, that was all I could imagine myself doing but I always had an excuse when it came time to get down to business. I tried to push myself to study  other subjects but always found my way back to food. Several years ago I began baking at home, I am a make everything from scratch kinda girl but baking from scratch was new to me. I decided I would give it a try, I started with cookies and muffins. Later ventured into cakes, then cake decorating and breads. I would get excited just looking at beautifully decorated pastries, it was so natural to me. It’s weird because I am not a fan of eating sweets, breads on the other hand are a difficult subject for me because I can’t get enough of them.

Life continued on and I kept telling myself it would happen one day. Well, one seemed to never arrive and I just kept putting it off. My life was already so hectic, a working mom with all these kids how would I ever find the time, right? I went to tour the a school for culinary several years ago thinking that was the direction I wanted to go in. During the tour I walked by students working on Pastry decorating and it stopped me in my tracks. It was very emotional, I felt like I wanted to cry. The person giving me the tour looked at me and said, “Well, it looks like you have found your calling “. After that I knew that I wanted to be a Baking and Pastry Chef, I  registered but never started school. I soon found out I was expecting again and Sophie’s health had begun to really get complicated. The timing was just not right but I beat myself up for a while feeling like I had given up.

I finally made the timing right, I made the decision to finally do this for myself, for my family and our future because I know in my heart this is where I will be successful. It was a tough decision because I will rarely be home, but it is a sacrifice worth making. If I kept making excuses I would never find the right time because let’s face it my life will always be busy and complicated.

Today was my orientation day through it all I wanted to cry, I was so happy. It was such a liberating feeling with no guilt attached.  I start college next week and for the next 18 months I will be busting my butt to be the best I can be because I am going to make my dreams come true.

Yes I waited until I was 35 to go back to school but there is also a lesson to be learned. We often make excuses to avoid facing those things we are afraid of and it doesn’t matter what age you are. Dreams can always come true but you have to make it happen. I am making my dream a reality.

Happy 35th Birthday to Me!

Who knew what a crazy journey life would have in store for me this week I celebrated 35 years of life. I believe you are as young as you feel but at the same time I have never liked myself more than I do now, I have grown to love and accept myself and I believe that growth comes with age. I plan on aging as gracefully as I possibly can, that is one of my life goals because every year of life I celebrate is a medal of triumphs for my soul.

I have not really celebrated my birthday with a party or anything of the sort since my 15th birthday but this year I got a surprise. My daughter and her cousin coordinated a surprise birthday party for me, they dragged in my husband with the rest of my small family and my friends. It was truly beautiful to see them all come together to give me such a wonderful gift. Being together!

And the funny part was I just wanted to stay home and watch movies that night but my husband made me get dressed and go out, no pajama night for me. So when we arrived at the location I walked into a dark room and when the lights went on I got the old-fashioned “screams of surprise”,  and clapping. I almost cried but I held my composure.  It was really fun, my favorite dishes were made and my closest friends were there. I feel so blessed to be surrounded by so many people who care about me and love me for me with all my faults and imperfections.

It was a beautiful 35th Birthday celebration and after that our amazing friends Myra and Eddie invited us out for drinks and dancing. We always have such a fun time with them, I am so happy our return to Florida has yielded so many positive changes in our lives including new friendships!

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My very best friend Glenna! She is my light, always there for me no matter what. I love her so much.

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My beautiful daughter Emily!

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My brother, always here for me!

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Our beautiful cousin Anabel, she and Emily just had to surprise me.

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My friend Beth, always there for me.

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My aunt Gloria, she is from my crazy side always the life of the party!

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Priscilla, family and godmother to my eldest.

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The crew!

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Sophie and her uncle!

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My friend Sally.

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My friend Porfie.

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Gabriela, she is like a daughter to me.

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Grisel, she is Sophie’s biggest cheerleader and has become a huge part of our family. Love her!

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Luisa, we have become very close in the last months. I am so grateful for our friendship.

The kids, Tristan was upset and would not pose for the pic.

The kids, Tristan was upset and would not pose for the pic.

Elyas and his uncle.

Elyas and his uncle.

My uncle Albert.

My uncle Albert.

My son Arturo and his girlfriend, she is a cutie.

My son Arturo and his girlfriend, she is a cutie.

Gabriel my middle child, he is my class clown.

Gabriel my middle child, he is my class clown.

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Myra and Eddie, such great friends.

Myra and Eddie, such a wonderful friendship has blossed between us all.

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The man of my life!

 

A long awaited graduation

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This year has been a year of beautiful moments!

My son, my first-born Arturo has achieved so much and I am so proud of him. Having a sister with special needs is not easy but to him it’s no big deal, Sophie is his sister and that’s it. I could not have asked for more amazingly loving children.

When we moved back to Florida last year my kids were ecstatic, especially the three older ones. They were so ready to get back to school and interact with their old friends and that was the plan but to our surprise when I went to enroll my high schoolers back in school we were told my son only needed one credit and there was no need for him to attend school physically. What? No way! How did that happen? Well, I am proud to say I have been blessed with very smart kids!

And so the only credit he needed was accomplished with an online course so he got to skip his entire senior year! Whoa!! It was all as if God had laid out this plan for us as we were trying to get back on our feet and I had no help with the kids. Arturo took over and was there to help me during the day as we worked towards our goal of getting back on our feet.

And then the year passed and it was time for him to graduate High School! We were psyched! In my immediate family graduating high school was never a priority. Yes I went back and graduated after Arturo was born but it’s not the same for me. My son finished school, he rarely missed a day of school and was always a great student. Always so smart and well-behaved, I am very lucky.

Since Arturo did not want to participate in all the senior year functions like prom I wanted to make sure he felt how proud we were of him and his accomplishments. The day of his graduation we took his brother, sister, cousin, godmother, great-grandmother and uncle with us. Let’s say it was enough for him to feel the love!

We threw him an awesome graduation party and soon after he was registered in college, actually we registered together! I am so proud of him! His uncle bought him his first car which I was not ready for but I know have to let him grow up. He got his license and began working at the beginning of the year and he is dedicated and responsible. He has this great work ethic that I like to say he inherited from his parents. He is all that I could have ever asked for in a child. God has blessed me immensely.

Congratulations to my amazing son Arturo!

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