Accepting my fears and moving on.

It’s no secret that my daughters declined health has been the cause of a great sadness in my life, having a child with special needs is HARD. I try to be strong, to keep my self together so I can balance my life but recently I began to realize fear had begun to consume me.

This past week Sophie began showing signs that her sinus infection was getting into her lungs; she woke up one day last week burning up with 103 fever and completely limp. I stripped her down to her diaper and took her out to the living room where the fan was running. She was coughing and fighting the need to vomit the phlegm that was rising up from her lungs. It took about an hour but the fever broke. When I got her to see the doctor my fears were confirmed, her lungs did not sound good, once again the onset of pneumonia. She was treated with the usual, rocephin injections for several days, steroids and follow-up antibiotics. She will see her ENT this week to evaluate if she needs to be put back on the levaquin.

During the visit with our pediatrician Dr. Nieves, I could not hold back my tears; my fear has begun to ger the better of me . And I asked her a question I already know the answer to, I asked her, “if now that we know why Sophie’s body does not filter out bacteria (PCD) and her immune system continues to be compromised are the risks of losing her greater now?”. She just hugged me.

Dr. Nieves went back in time and spoke about Sophie’s first two years of life, all the infections and moments with difficult decisions. Then she told me something I never knew from her, she told me that she did not think that Sophie would survive this long. Watching such a small human being overcoming so much sickness is only something  you see by the Grace of God. That a child could live through what Sophie has lived through and is still here to see another day is truly a miracle.   Sophie is our miracle.

She then began to tell me that when God is ready to take Sophie he will take her whether she is sick or healthy.; that Sophie is only borrowed. And if it happens and God decides to take her that I must let go and know that I did everything I could to give her the best quality of life possible. Dr. Nieves believes there is a deeper purpose for Sophie’s existence and I also believe that.

Dr. Nieves has been the only doctor who could be brutally honest with me but in a comforting way. Maybe it’s the love we share for my girl that unites us. Maybe Sophie has just touched her in a deeper way than I understand but for what ever the reason I am grateful to have Dr. Nieves in our lives.

Lately, the fear of losing Sophie has left me emotional scared. I can’t talk about  Sophie’s health without breaking down. There are triggers everywhere. I’ve allowed the fears to consume me so much that I am not enjoying my family, my daughter or my life. That has to change just as Dr. Nieves told me…she said “you must let go of this fear or you will miss out on all the wonderful moments you have with Sophie right now”. And she is right.

I must face my truth. I have a child who is sick. I have a child who can be taken from me at any time. I must move forward and continue to live without thinking about it every second of everyday. The time we have now is what matters. As Dr. Nieves said, “She could live for five more years or forty but only God knows; the important thing is to enjoy every moment we have with her”.

I never thought.

 

I never thought I would have a child with special needs, but I did.

I never thought I would give up all the materialist comforts I worked so hard for with such ease, but I did.

I never thought I could be so strong, but I am.

I never thought one person could change another’s life so drastically, but they can.

I never thought I could be someone’s voice, but I am.

I never realized how much happiness there is in the simplest of things, but there is.

I rarely stopped to exhale, I rarely looked at someone and felt their innocence and beauty; that was until you came into my life.

I thank God for you, everyday!

Without a second thought I would give it all up a million times if that meant you would be a part of my life.

You give me strength each morning as I lay next to you and listen to you breathe.

You changed my life in ways I could have never imagined but because of you I have become the person I was meant to be.

You may not yet have the words to tell the world who you are but until you master them I am honored to use mine and I will never let you down.

Your simple and beautiful in every way and in all you do.

I’ve learned to exhale and feel the wind flow through me. Watching you learn and grow has given me a new perspective on life.

God is holding you in the palm of his hand, he knows I need you more than he does right now and I am eternally grateful for the gift of you in my life.

My amazing child of God how I love you and all that you are; you, my love are perfect exactly the way you are.

 

 

The IEP Meeting

After months of phone calls and aggravation I finally attended the first IEP meeting for Sophie yesterday. Before we moved back to Florida I began making calls about transferring Sophie’s IEP over hoping it would make it a smooth process. We returned just as summer vacation was about to begin, I received confirmation that the correct contact person had all of the documents they needed for the transfer process. As soon as the school board employees returned to work just before the new school year I began my phone calls to get my girl set up for schooling.

It turned into almost two months of being referred to the wrong person,  leaving messages with no return phone calls and almost everyone I spoke with was clueless. When the doctor gave us the final NO that Sophie could not go to school I once again contacted the main school board line and was finally referred to the correct contact at the Hospital Homebound department, Mrs. C. Finally, someone who knew what they were doing and gave me the right direction to move forward.

I was told to drop off a registration packet at what would be Sophie’s home school, and provide the Hospital Homebound department with the correct documentation that was to be completed by Sophie’s pediatrician. It was done within two days, I also included copies of Sophie’s IEP and a letter I have rom the state requesting updated IQ testing.

Within weeks I had an appointment to get this show on the road. I was pretty stressed just thinking about it because our first IEP meeting in Florida was a disaster, you can read about it here. In North Carolina they were great and helped me past the negative experience I had in Florida. Thanks to the great team we had for Sophie there I was able to let go of the past experience and come into this new meeting with a clear mind.

The county is always changing the way things are done which led to a bit of confusion as to who should be at the meeting and at what school but we had the meeting anyway. I met with Mrs. C. who will be overseeing Sophie while she is in the Hospital Homebound program and with the ESE coordinator Mrs. A. Apparently the meeting should had been done at the school where Sophie would have received instruction and not all schools in the county have pre-k. All the confusion is because she is 4 going into pre-k and not 5 going into kindergarten.

Mrs. C and I hit it off instantly, she was so nice and you can see she truly cared. We went over the current IEP from NC and Sophie’s medical history. Later Mrs. A arrived and took us back to the conference room where we began our meeting. Because Sophie is a transfer from out-of-state she needs a case review for OT, PT and Hearing services. I am not worried because I know they have to honor the IEP and she needs the services it is quiet obvious. Instead of waiting to have all the services implemented together both Mrs. C. and A. agreed it was not right to keep her without services while another meeting is coordinated so we created the IEP with Curriculum (Pre-K Teacher) and Speech and in the next few weeks we will meet again and add the other services to the IEP.

I was impressed. I shared my previous experience with them both and they seemed shocked at how I was treated. Our goals were all the same, to get Sophie the instruction and therapy she needs to continue to progress.

This was a successful, positive IEP meeting. I can only hope those who will be coming to our home to provide services are as caring but I have faith.

This time around I am not afraid to speak up. I know the next meeting will be hectic because there will be at least four other individuals there if not more and that’s when the meetings can get crazy. But I have one goal that is my daughters education and I feel prepared and able to maintain my course and character to ensure she gets what she needs.

Hooray for great IEP meetings!

 

Tomorrow is never promised.

I know all too well that no tomorrow is promised. Life happens and we sometimes have no say in the outcome. Bad stuff happens, sometimes over time or in an instant. When there is so much despair sometimes we have a loss of time that accompanies such dark moments because we are in such shock. We may not know what our future holds but we can certainly live our every moment enjoying and spending time with those we love.

So in these moments of despair as we adjust to overcome my families newest battle, cancer, that has afflicted my brother Luis.  We will live in the moment. We will laugh as much as possible. We will hug each other and take pictures more than we ever did before. We will make sure we all know how much we love each other because in the end that is what matters.

It’s so important to live in the now. We become so consumed with our daily routines  and we make excuses for not making time for family and friends. And then when the unthinkable happens you wish you would have made the time and put in the effort.

Since we moved back to Florida I have made it a priority to be with the people we love. My house may not be spotless, I have a ton of laundry piled around the house and I have not detailed my car in over a month. Those things do not bother me anymore. Instead of filing the two bins of paperwork I have waiting for me I took my kids to the beach. Instead of folding or ironing clothes I sit down and cuddle with my babies. Instead of taking an hour to blow dry my hair or work out I watch movies with my kids, play outside and make them deserts.

We are here today, I will not wait for tomorrow because tomorrow is not promised. And yesterday…….well. Yesterday is gone in what seems like the blink of an eye. And when all is said and done and we have overcome yet another stone life has thrown at us we will have made beautiful memories and will appreciate each other and our lives so much more.

Our younger years…

Luis Alexander, My brother.

Luis, my mother, my aunt Ivette and I’m the little one with all the hair!

My brother Luis the cute one in the glasses and I’m in the green posing as always.

Luis was Blonde!

Me and my grandmother.

I’m the sassy one! I still have that costume.

Can’t deny I was always different and my own person.

Yes….I was in beauty pageants.

Luis jumping with excitement, me sitting proper on the tube.

Luis and our younger sister.

My siblings! Luis, Jessica and Gloria

Crazy couple of weeks

I’m still here! I know I’ve been missing in action lately, I’m sorry. Life catches up with me from time to time and there are just not enough hours in a day for me to accomplish much.

I’ve been working on opening a cleaning business, my husband has been out of work for over a month and the kids started school this week.

Getting school physical’s was a nightmare, Emily received vaccinations she did not need and I had a showdown with the doctor. Big mom fail, I’m very upset at myself. She is fine, thank goodness and the vaccines work as boosters and have no ill effect but it still sucks. I learned to always listen to my gut and walk away more often if I need too despite the desperation and stress in my life at that precise moment.

My eldest son only needs one credit to graduate high school so he does not need to attend senior year. He will be taking the last class online and we are working on dual enrollment so he can take college courses for the rest of this school year. We are sooo proud of him!!!!

My brother has been around so much more and I absolutely love it. The kids anticipate his visits and sleep overs. We have always been close but lately our bond has grown so strong and I feel very blessed.

I’m hoping the next few weeks will be a bit calmer but I doubt it. My email is in the thousands and I have piles of paperwork and laundry everywhere.  Lately people keep asking me how I manage to do so much and truthfully I don’t think I am getting much done. My house is clean though so that’s a plus!

On a good note my friend Elisa is doing my hair again and I’m starting to feel alot like myself again. Elisa did my hair for many years and she just got me. She was able to bring out my personality and was able to make me look and feel great. We are gradually going lighter but I love it so far.  Elisa ROCKS!!

I’ll be back…. Hope all my followers are doing great. As always thanks for stopping by!!

Invisible words

We live in an age where technology is an integral part of our everyday. We rely on it often too much. We often forget that before all of the technological advances in communication people interacted with each other without the necessity of emails and text’s. We met up and talked, we used our phones to call each other and life was simpler then.

What we have yet to realize is that by using technology for communication sometimes our words can become invisible, subject to interpretation by the receiver. Many times the interpretation is nowhere near the tone in which we wanted our words to be heard. Sometimes the easy way turns out to cost you more than you could have imagined.

In the heat of a moment when we are emotional and heart-broken we react. Sometimes we overreact and all it does is escalate a situation. Words are taken out of context and words can become twisted. Emotions become tense, the hurt grows and what was once meant as an attempt to resolution ends in the destruction of something that was once great.

And then you wish you would have just had the strength to look into each others eyes because only then would the true nature in which words were meant would have been understood. Written words can be invisible, we write them expecting others to know exactly how we meant to express ourselves. The emotion used to write the words is not visible and therein lies the problem. Words can be so black and white.

I had the opportunity to take words that had been shared in black and white and give those words their feelings and meanings. I had the opportunity to look into a persons eyes and understand the feelings with which their words were said. I had the opportunity to express and explain what my words meant. And then we sat there and realized we both could have reacted differently. You can’t take back what has already been said or done but I am grateful we were strong enough to face the truth so we can move forward.

Invisible words can be powerful, they can take something that was once great and break it. We can’t go back and pick up where we left off but we can move forward with peace. And even when you bring light to a situation and clear any negativity related to it, what’s done is done. You cannot live your life with resentment or negativity and we must have the strength to make the first move, to follow your heart to set things right.

We must be careful with our words and not underestimate their power.