Harder than my reality… is their reality.

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.

How do I go on?

How 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.

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.

Why I pulled the plug

I 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!

This 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.

A long awaited graduation

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!