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.

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!

 

 

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.

Letting go

For more than half of my life I have struggled with myself, with my existence; learning to let go of the chains that held me down was one of the most difficult challenges of my life. My childhood was difficult, by the time I was a teen I was lost emotionally and had no clue who I was or where I belonged. It was a journey that took me to some dark places, it led me to mistakes I could not possibly understand at that time and ultimately to grow up way too fast.

As the years passed my emotional struggle only became more difficult, the anguish and isolation I carried as a child only escalated into my adult life. I was easily angered and cried all the time and for everything. An argument would easily turn into a screaming match, my husband and I had a love hate relationship for many years; he loved me and I hated him for it.

When you are raised without the expression of love it can leave an emptiness deep inside of you, it consumes you. I had no relationship with my mother because from an early age I was well aware of how much she never wanted me, I don’t recall a loving embrace, compliment or words of encouragement from my family. And, it’s not their fault it’s just the way they are.

I lived most of my adult life longing for happiness and not understanding why I could not be the happy person I had always dreamed of being. I had a good man by my side, beautiful children, a good job and a nice home. And yet nothing, the torment was still there.

Then my daughter Sophie was born, her birth lead me to an even darker place until one day I just hit rock bottom. I tried to mask my hysteria, I even convinced myself of my own lie. Everyone around me always commented on how well put together I was, yet inside I was a raging mess of anger, heartache and tears.

In the last year I finally found the strength to meet with someone whom is now my life coach. It was the best decision and gift I could have given myself,  it was then that I realized that I was my own worst enemy. I, and I alone had the power to change how I felt and make the changes in my life that were needed to truly be happy. And so I began the process of letting go, it started with an extensive conversation with my husband. It was time to accept responsibility for my mistakes and realize that I was using him as my emotional punching bag “figuratively, of course”. I then followed that process with forgiveness, I forgave myself for my own mistakes and forgave all those who had hurt me. Carrying all that anger and resentment was only poisoning me.

I then put my life goals out on the table, I was able to see myself for the first time and I could see where I wanted to be in my life and what changes I needed to take to get there, I was able to find my path. I also had to free myself of my attachment to my children, while they are my life the truth is I also want a little piece of personal space for myself. This also gave them the extra freedom they needed to begin to find themselves and today my three teenagers and I have a better relationship than we have ever had.

Letting go is a work in progress, but I love who I am today. I finally feel like I have grown to become the person I was always meant to be. I feel at peace with myself, I am happy and healthy and the best part is the anger is not there anymore.

Now, it’s not an instant fix, my life is far from perfect but it’s enough for me. I still have tough days and I am certain there will be many in my future but even through those days I continue to remind myself that only I can control the outcome of my happiness. Letting go of the past is  just as important as letting go of the circumstances life throws at you that you ultimately have no control over. And equally as important as letting go of other people’s choices and negativity; I’ve learned how not to allow any of it to consume me anymore. In the end its my life,  it’s my choice, and I am the one in control.