I am stronger because I am their mother.

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.

Cried myself to sleep

We have been really busy in the last few weeks, including moving to a bigger house. My mother in law left to her country for a month and she is the one who helps me with Sophie. Sophie was having a hard time adjusting to her not being here and then the chaos with the move really overwhelmed her. I had to unpack the house within the first two days of moving, I even stayed up from one day to another to try to speed up the process. Sophie refused to eat for about four days and she lost a lot of weight.  But as soon as the house was unpacked and I reassured her this was “home” she started falling back into her routine and eating again. I am happy to report she has regained the weight and is back to eating every two hours.

This has been the best year Sophie has had since her birth, thanks to the combination of medication and respiratory treatments we have found a way to control the symptoms to her lung and sinus diseases. This has helped her maintain better health, she has a better appetite and she has even begun learning more and at an accelerated rate. I am so grateful to her doctors for never giving up on my girl.

Some days I don’t even think about Sophie’s lung disease but then we have a bad day, a really bad day that throws me back into that place of anger and fear.

Yesterday Sophie woke up with a nasty cough, its debilitating for her. But at the same time it is the best thing that could happen because without the cough helping her body get rid of the phlegm that phlegm would coat her lungs to prevent proper function causing lung collapse.

Her temperature was starting to rise and she was clingy and whiney which is not the norm for her. I started with breathing treatments and then her compression vest and we continuously repeated these throughout the day. She spent the day having episodes of expelling phlegm, it’s so hard to watch her go through that. She had a couple of bouts of drowsiness and turning blueish from lack of oxygen, each time it felt like my heart was going to stop. But I was able to get her breathing back to normal again.

I found myself crying a lot though out the day. When she starts having good days these bad days hurt so much harder because I am so hopeful for a miracle, that her body will become stronger.

Bedtime was the hardest. She was so exhausted but the cough would not let her rest, and as soon as I began to doze off she began to choke and by the time I jumped up and positioned her to clear her airway she had already aspirated on the phlegm. After cleaning her up and changing all the sheets all I could do was cradle her in my arms and rock her. And I cried, those heavy tears that have no end. Those tears that take your breath away, that come from the deepest depths of your soul where all the fear and pain hide. And after a long while when she finally settled down enough I laid her down next to me so I could hear her breathe and I prayed. I prayed over and over again, and I cried until I fell asleep.

Sometimes all you have to comfort yourself  is a good cry. Oh what I wouldn’t give for my little girl to be healthy. If I could take this disease from her and live with it myself I would in a heartbeat.

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.

Kindergarten

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.

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.

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!