Tag Archives: community

Mothers Day 2015

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.

20150510_200100

20150510_200027

DSC_0635

Love yourself, not your looks

20141030_110620

We live in an era where young girls are taught that their looks are all that matter, and we have toddlers who are already obsessed with their looks. And it’s all society’s fault and by society I mean, all of us.

As young girls the notion that we must look perfect at all times is drilled into us either at home or with almost every social interaction we encounter or have encountered. Why? Because we live in a world that has been dominated by men, the very men who have made us think that we are less than them. We must be thin, we must have perfect hair, we must never leave the house without make up etc. Why? Who are we trying to please? The truth is women have been and are still being raised to believe they have to be porcelain dolls to please men for many years, until now. Don’t get me wrong, I love my husband and want him happy and I want him to feel proud that I am his wife but my goal is not to be beautiful for him. The truth is we should not be trying to please anyone other than ourselves nor should we be teaching these negative traits to our children.

Each of us is different, unique and special. Why not teach our children to love themselves and others. Let’s NOT teach our daughters and sons to grow up with negativity in their hearts and a senseless obsession to look like something they are not.

I grew up feeling ugly, I was thin so I remember making fun of my sister who was heavier than me. Yes that was cruel but when that is what you are taught is ok, than you don’t know otherwise. As I grew up and began to have children I began to gain weight, a lot of it. I struggled for a good fifteen years with depression, and a huge part of that was that I hated what I looked like. I was fat, period. And being fat was wrong, never mind that I was healthy I was fat and that’s all anyone could ever see so that is all I saw.

I put myself through dozens of diets, I lost weight a couple of times including sixty-five pounds in 2004 which required 2-4 hours of exercise daily. I still hated how I looked, my grandmother saw me one day and cried, she asked me to stop losing weight because I looked sick. And the crazy part was that according to the doctors charts I was still overweight.

I can now look back now and see how truly beautiful I was all along. I am beautiful, I have always been and it has nothing to do with my looks. It is my unconditional love for others, my extreme dramatics which fuel my passion, my ability to forgive and help others, my outgoing and fun personality and so much more. Those qualities are what make me beautiful but it does so from the inside out. It was always me, my looks are only a part of me they are not who I am.

Having Sophie helped me realize that difficult truth and after many years of self torment I can honestly say I love myself exactly the way I am. All my 208 lbs. I have cellulite, stretch-marks, a loose tummy and saggy boobs and that’s ok. Those are my medals of honor for creating six beautiful souls and nursing them with life. Every stretch mark and cellulite dimple are a part of my journey and I love them because they are a part of me.

I am healthy, I eat healthy and I am very active but yet I still weigh a lot and that’s ok. We are not all meant to be thin, sometimes genetics have a lot more to do with our physical makeup. My sister is now thin and I am the heavy one and that is totally ok with me because I love myself and her.

Instead of teaching our children to bully themselves why not teach them to be healthy. Eat fruits and vegetables instead of fast food, drink water or teach them to make natural juices or smoothies instead of soda and energy drinks. Let’s get our children off of electronics and out into the community, go to the park, volunteer or play sports. Let’s teach our children to live and love who they are because they are perfect the way that they were created.

I am a mom. I am thirty-five years old. I am not thin, I have wrinkles and I hate to wear makeup. I spend most of my days in jeans, t-shirts and converse. At home I’m always in my pajamas and most of them are all bleach stained and I love them! Some days I forget to fix my hair and I look hysterical and I’m ok with that. I don’t care what people think about me or my looks anymore and I have to say it is pure freedom. I love my curves’, all of them!

So learn to love yourself. If you really want to lose weight and be thin then do it. But do it for yourself not to because you are trying to please other people’s images of what you should look like. You can do anything you truly set your mind too.

Our ultimate goal as a society should be to be HEALTHY! We should teach love, acceptance and equality. Let’s teach our children to love themselves and others not what they see in the mirror.

 

 

We chose to return

PDF.Photo-page-001

Last week in North Carolina after we were done with all the hospital visits we had a few hours to kill before our flight back to Florida. We had hoped to visit Raeford to see some friends but there was not enough time since it’s a two-hour drive each way. We did however make it to my husbands old job which was only half the time in travel. My husband had a great job while we lived there, his employer was truly great with him and us and my husband was happy there.

It was important to him that we make the effort to stop by and say hello to his old boss and co-workers, we are happy we did. They were all so happy to see each other, it was a nice experience.

On our way back to the airport we found ourselves reflecting. We talked about the move and what we liked and didn’t like about our move there. I loved it in North Carolina, the weather is beautiful and it’s just so peaceful. What I missed was the business of the city and all my people here in Florida, my friends and family. It wasn’t until that drive that we had really discussed our experience there.

And while we went over it all he asked me if I thought we would have adjusted to life in North Carolina and without thinking I replied with the purest of clarity, I simply told him, “yes, of course we could have but we chose not to”. And he just looked at me and grinned. It was more than just about us, our three eldest children were not happy there, they were very sad there. I had my heart and mind-set on trying to stay there until I experienced several anxiety attacks that made me long to be back in Florida. I felt overwhelmed and alone, the long drives to the doctor and having to coordinate care for my other children on these days took a toll on me too. My children did not want to be there and my husband never wanted to leave Florida to begin with. When I felt it was best for us all to make the move back to Florida we discussed it and my husband and I made the decision to return to Florida together. I do not regret that decision.

In the end it was a great experience, we had a great team of doctors there and we got answers we had been searching for regarding Sophie’s health. We made new friends and experienced a quiet life for a bit. The school system was great with Sophie and we were very comfortable in a really big house. But even all of that was not enough to make us want to stay. Today I am grateful for the experience and to be able to look back and say at least we tried it.

We came back to Florida with a new appreciation for everything in our lives. Our friends, family and all the things we work so hard for. The experience gave us a new perspective and appreciation for life in general. Because we made the choice to return to Florida as a family it helped us find balance within our family unit and has helped us grow closer. For that I am truly grateful.

DSC_1371

DSC_1477 - Version 3DSC_1315

Trip to UNC

This past week we made a trip to UNC-Chapel Hill in North Carolina to meet with the Pulmonologist who diagnosed Sophie with PCD, Primary Ciliary Dyskenisia.  We agreed to take part in a current study which includes PCD so we made a trip up there for testing and for the doctor to examine Sophie.

PCD is usually a disease that is passed down genetically but there are new links between this disease and certain genetic syndromes, Cri du Chat Syndrome is one of those genetic syndromes. I was initially told that Sophie had PCD but not from her 5p- deletion and it was also ruled out that the link was not genetic. That left alot of questions. So when I was contacted by UNC about bringing Sophie back for more testing I was confused thinking they wanted to  repeat the testing for PCD because they suspected a possible misdiagnosis. I was wrong.

In other patients with PCD the link between the chromosome 5 deletion, aka Cri du Chat Syndrome and PCD were apparent. In Sophie’s case it is proving harder to map out but the doctor is certain Sophie’s PCD was caused by her 5p- deletion. Sophie is just making the doctors work harder to map out exactly where and what area is responsible for causing PCD and what type of PCD defect she has, she is making them (the doctors, researchers) think out of the box as she does everyone else.

There is no doubt Sophie has PCD, this was verified by the doctor. There was also a nitrous oxide test that was performed wich came back consistent with PCD as they expected. Once I discussed it all with the doctor I was relieved, not because my daughter has this disease but because if she did not then we would be back to square one with no answers and no direction for treatment. Despite the devastating diagnosis of PCD I am truly grateful that I know what we are dealing with.

The doctor was pleased with her state of health considering everything she has to deal with. The Dr. who performed her lung biopsy last year and who was also involved in ruling out PCD said Sophie looked like a different child. That was huge, she said Sophie looked so healthy and lively. Compared to her deteriorated state last year when she had her sinus surgery she truly is a different child.

Thanks to this PCD diagnosis Sophie’s doctors were able to come up with a treatment plan that seems to be working. Sophie is now on Rocephin via her nasal irrigator everyday, she receives two or more treatments with her compression vest everyday; along with 2-6 breathing treatments and her other meds and vitamins.

We have to basically keep Sophie in a bubble because every little bit of exposure is critical to her health, this one day trip to NC resulted in a respiratory infection that she is till fighting off.

Sophie was born for more than just being my daughter, her presence in this world has been felt. She has changed lives, starting with mine. Sophie has opened the door to help Science in many ways and Dr. Leigh the Pulmonoligst who found her PCD said that she would be a super star and be the key to opening the door to understanding and maybe even possible treatment options for others in the future.

My Sophie. She is my shining star! She is my inspiration. My miracle baby!

(Sophie at the Hotel, she loves elevators. She is so independent now when it comes to walking) When you look at her, and interact with her you know with no doubt she is perfected by the hand of God. Beautiful innocence!

20140313_073846 20140313_073900 20140313_073902 20140313_073843

 

Everyday is a lesson

Be Master9

With each passing day there are new lessons that life can teach us. When you make a commitment and choose to change your mind, heart and soul to let go of hatred and negativity all you need is the will and you will succeed.

I am not perfect, nor do I pretend to be but I like the person I am today. When I look back to all my yesterdays I understand why so many mistakes were made. Accepting the mistakes I’ve made, forgiving myself and others have led me on a path of happiness.

I am happy, the happiest I have been in a very long time. My children are happy and calm, and our home is peaceful. I cannot even remember the last time I cried, that is a blessing. And I accomplished this serenity with a tremendous amount of faith and support from my wonderful husband.

Even though I am in a good place emotionally and spiritually is does not mean my life is perfect, I will have days that leave me drained and spent. Everyday circumstances can effect my moods and my energy level can also have a huge affect on me.

But, with each day and every encounter I have a choice. I can choose to be strong and forgiving or be angry and bitter. I am no longer angry and bitter. Life is too precious to waste one moment of it.

Take each day my friends and find the lessons life is giving you so that tomorrow will always be better than today.

If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present. ~ Buddhist Wisdom ~
1509853_231391547059385_410326053_a1013335_595262320566234_1173507330_n

1960065_595259207233212_2016819625_n

Your almost 5.

8123_1220548962849_2241464_n

Sophie. Your fifth birthday is only two months away, my heart is full of joy that you are still with us on this earth. From the day of your birth I have feared losing you. When we were told you would not live past the age of two and if you did that you would be in a vegetative state it shattered the dreams I had for you. There was so much heartache that I feared I would not be able to overcome the challenges we were gearing up to face. But today I can tell you that we have faced them and tomorrow will be another day with its own fight. We have fought for you as you have fought for your life. As a team, full of love and an unmeasurable amount of hope that has carried us to today.

You are going to be 5.

These almost five years since your birth have been the most difficult times of my life,  and yet they have also been some of the most beautiful ones. You my beautiful little girl are amazing! You are stronger than words can describe, you have the determination of millions in one tiny little soul. You are happiness and love.

You are my miracle.

You are my inspiration.

You are the reason I am the woman I see when I look in the mirror everyday.

With each day that passes I have new dreams for you. They may be not be the same dreams I once had for you because you my love are not the child I imagined you would be. You are unique as every individual is. I have new dreams for you, I wish for you to have a life full of happiness and health. That you may live to experience the world in all its beauty in your own way.  I dream of you growing into a beautiful young lady, watch you laugh and participate in life as you will always be surrounded by people who love you.

I know that your life will not have the same direction as the lives of your brothers and sisters. I know that you will grow and remain by my side. I know that your innocence will never cease and I love you exactly the way God made you.

You ARE my little girl. You ARE the little girl we had hoped for when we decided to add another child to our family.

You are perfection in the eyes of God and in my heart my sweet little girl. I pray that one day you will understand just how much you are loved. I pray that one day you may learn to know how much good your life has brought to this world.

You have changed me, you have changed us and you were a beautiful gift in disguise. Ahead of you is a limitless world full of opportunities that will never cease as long as you are still here with us.

I love you. We love you, ALWAYS!

1459152_586529238081716_365969773_n

CT Scan & Surgery

It’s been two days since mine and Sophie’s trip to UNC for her CT scan and meeting with the ENT and I have finally found some time to sit and breathe. Waiting for this day was so hard and trying to keep her well enough for this day was even harder. It took seven weeks from the day we scheduled it for it to actually happen and waiting was torcher. But the day arrived and I refuse to let anything get in the way of getting this done.

There had been alot of back and forth with the anesthesia dept at UNC and their concern with sedation since Sophie has had some issues coming out of sedation and a really bad reaction to chloral hydrate which is one of the meds used to sedate small children. With her aspirating they were afraid to partially sedate her and felt general anesthetic would be best, I just did not want her intubated. We arrived to prep for the CT scan as I changed her into a hospital gown and went over her medical history for the millionth time  I was nervous, I wanted to cry and almost did. The anesthesiologist came in to meet me with her assisting nurse, they were both AWESOME. The anesthesiologist an older doctor with many years experience was so positive and had this great energy about her. She told me Dr. Paulson, Sophie’s ENT found her that morning and shared with her the delicate nature of Sophie’s health. After speaking with me she decided it would be best to keep the process as simple as possible and opted for general anesthesia using the gas mask and no IV or intubation unless absolutely necessary. We both agreed it would be best.

They allowed me to walk down to the room where they performed the scan and I was there to comfort Sophie until she was out, I waited the few minutes it took for the scan right outside the door and was right there to walk back to recovery with her. Her oxygen was at 100 the whole time, that made me cry happy tears. In the past it was always so hard to keep her oxygen up above 85 and she always needed some nebulizer treatments to help bring her stats back up. Not this time, she did amazing and  was awake within twenty-five minutes. She was not even drowsy, she was ready to high tail herself out of there. It was the most wonderful feeling!

We then headed down to meet with ENT. We ran into fellow CDC parents Kelly & Mike and their beautiful daughter Hannah who were also there to see ENT, Kelly and I have been in contact for a while now on Facebook so we really didn’t need to break the ice we already felt like we knew each other. It was a great treat for the day!

Hannah & Sophie!

Hannah & Sophie!

Dr. Paulson arrived to see Sophie. I explained that in the last 7 weeks Sophie has been on five different types of antibiotics including a visit to the ER and she was saddened but was not surprised, we discussed that Sophie’s pediatrician also urged that something be done because we have run out of options to treat her. She took me to her office to show me Sophie’s CT scan results. It was not pretty, she has significant sinus disease in every sinus cavity formed. One area is even a little more mature than it’s supposed to be. The news was scary, to actually see all the damage and see her explain what is wrong with each sinus area was devastating I could feel the air leave my lungs and a heaviness take over me.

The picture below will show you the different types of sinuses, this is not Sophie’s it’s just a diagram to help you understand. The gray circles on the top sides are the eye sockets.

Sinuses

Sinuses

In a person with normal sinuses you would find sinuses like these, all the black areas are filled with air and normal. In Sophie’s CT scan there are two tiny slithers of black, barely visible and it’s 98% is completely gray. You can even see the thick layers of old mucous that will calcify eventually . Next to one of her eye sockets there is a fragment of bone that is not visible which is either to thin to see or missing and the doctor believes the bacteria has begun to eat away at the bone. It is rare to see such severe sinus disease in a child, especially to this extent.

Sinus surgery is very invasive and dangerous. When Sophie had her first sinus surgery at one and a half years old it was minor compared to what she is going to need now. The choices are to take the risk and clean her out and hopefully give her body a fighting chance or do nothing. If we do nothing the bacteria will inevitably become so strong and resistant to all antibiotics that nothing could stop it and or could leak into her brain. It’s already thinning out the layer of bones separating her sinuses from her eyes and brain.

We have no choice, we are running out of options. This is not a decision that could wait this is a matter of life and death and I chose life. Her surgery is scheduled for April 15, 2013, only three weeks away and Sophie will be kept overnight. Dr. Paulson agreed that sooner rather than later is best before more complications arise. Dr. Paulson will be performing the operation with a senior ENT who has been practicing at UNC for thirty years. They will be  performing the endiscopic sinus surgery, cleaning out Sophie’s ears which are full of wax and because of the way they are formed it’s impossible to keep them clean. She will also be performing an endoscopy and checking her airway and a few other areas for possible malformations.

So this is it. It’s scheduled. I’m terrified, scared does not begin to describe how I am feeling and the worst part is I will have to go by myself. UNC is two hours away and since we are completely alone my husband has to stay here with the other kids. All I can do is stay positive, remain hopeful and trust that God has her in his hands. I know he will guide the hands of those doctors to heal my baby.

I had hoped that one day she would improve and that all the other mom’s would be right, the ones who told me she would out grow this as she grew and became stronger. But this is not something she will outgrow. Sadly this is where our journey has led us.