Monthly Archives: June 2012

It’s done, good bye.

In November of 2005 after eleven years of working towards our ultimate goal of buying a single family home our dream was realized. Having owned two properties before this made us feel so proud. We had done it, we started at the bottom and with hard work and dedication we saw our dreams fulfilled. Well, that was what we thought.

Soon after we realized the loan we signed for was not the loan we got. By the time we realized this is was too late the loan had been sold and reassigned to another financial institution. We realized this was going to be a tough road for us but we were determined to make it work until our payments ballooned and double from one month to another. Our dream, our reality was soon shattered!

For years we tried over and over again to get the bank to work with us but they wouldn’t. So the years passed and our property went into foreclosure and the anger started to build up. The frustration of how this could have happened, the questioning of one’s self as to how start’s to eat at you inside. It’s stuff that can destroy families, it brings with it a lot of anger, sadness and an overwhelming feeling of helplessness to know that your family’s home is lost and there is nothing you can do to change it. It’s heartbreaking.

About two years ago we started trying to short sale the house, it was a very hard reality to swallow. We signed several contracts but they fell through. And we started to lose faith that we would never get through this. The longer we were here the stronger my emotions became, hope became despair, dreams became lost, then there was fear, anger and sadness. There was a lot of fighting, yelling and crying on my part. Little by little it was destroying me and the need to get out, to move on and start over started to overpower those feelings. Then I started to realized a few things; I believe everything in life happens for a reason. The state of Florida is not the greatest state for services for children with special needs, the waiting list for the medical med-waiver program is YEARS long. As Sophie grew I started realizing leaving FL was looking like a good option.

Maybe we were never supposed to be here permanently, maybe this home was never supposed to be mine if not for this brief time. When Sophie was born my husband had just taken a 50% pay cut and I had to quit my job. If we had not been in the house in this precise situation we would not have made it, call it a blessing in disguise. Having hit financial downfall helped teach us a lot. We will not walk away from this wondering if this will ever happen again we will walk away with tools to do better next time around. We will walk away stronger and wiser.

Nine months ago we signed a shortsale that seemed promising but after four months just as our approval was coming in the buyers walked. Another family wanted it within a couple of days so we pushed on in hopes that this time it would work. I was desperate to see an end to this. I wanted out of this house that had brought me so much pain but the endless wait was overwhelming.

My shortsale to make matters worse was the most stressful and time-consuming experience my realtor and the title company had ever experienced. It’s as if something just kept trying to destroy the whole process but we did not give up. There were hundreds of email exchanges, phone calls and documentation requests amongst my self, the tittle company, my realtor and the bank. But we did not let up, we pushed and pushed. And finally it was all approved two weeks ago but not without complication, of course. It took another two weeks to resolve the newest challenge. But we got it resolved!

Yesterday we closed, we did it! As I sat in my car on the way to the closing I felt the tears start to flow down my face, I could not help it. I was not sure if I was sad or happy or maybe a bit of both. I made it through the closing fine but I was extremely nervous through the whole process. As I signed each document it felt as if one by one the dreams I once had started to float away.

When we walked out into the hallway to leave it hit me, this huge surge of built up emotion; it’s done, it’s over and I could start to breathe again. I cried seven years worth of tears in several minutes. The reality was that this was no longer my home. That the dreams I once had there were gone forever. That I could finally close this chapter in my life and start over. Then I realized, I was scared. Was I really ready for this? It took me a few minutes and after a hug from my realtor and some words from my husband I pulled myself together. This was what I had been wanting for quite some time and I got it.

So now it’s time to move forward but I will forever have many memories here. We start our new lives with a move from Florida to North Carolina where we will make a new home. Where we will meet new people, make new friends and rebuild our dreams once again. Many times along this journey I felt helpless and almost lost my faith but I know now it all happened just the way it was meant to happen.

Thank you to the tittle company “First International Tittle” and my realtor Sally Nunez for your dedication to help us get this done!

Good Bye what was once the De Leon home!

Good News

I had a tough morning yesterday feeling really bummed about the complications with our short-sale and the delay in our move. Sophie had a rough day yesterday too, sensory days tend to wear on you. I realized I let my frustration get the better of me and was a bit of a hormonal bitch for most of the day. So I blogged, let it go and got it out of my system. I prayed yet again for some guidance and was able to get through the day. Just when I was least expecting it I received an email with the first set of documents we were desperately waiting for. Answered prayers or coincidence?

This morning on a Saturday, I woke up to an early call from the negotiator working on the other half of the documents. To my surprise she wanted to reassure me that everything was submitted and we should have everything we need on Monday. Again, answered prayers? possibly…. Or maybe she just understood and sympathized with my situation when I talked to her over a week ago. Either way I appreciate it more than she will ever know. I guess God has a way of renewing my faith in people when I need it most.

Good news is GREAT. I now have some direction and can begin our preparation for relocation next weekend! Finger’s crossed and a lot of faith that this week is smooth and successful.

Tired of set backs..

Today should have been my moving day, I’m totally bummed that we had yet another set back that threw our plans right out the window.

This house is like a dark lingering cloud that hangs over me and I cannot escape it. From the moment I bought it my life has just spiraled out of control and now to get rid of it has become a nightmare. I follow through will all the banks requirements and they take their sweet time. The don’t process paperwork correctly and then who pays the price, little ole me. Months pass and we wait and wait and wait and when we finally start to see a light at the end of the tunnel and it feels like we are finally coming to the end of this nightmare another complication arises and here we are yet again at the Mercy of Bank of America. Bank of America who is totally unorganized, who’s customer service sucks beyond belief and there procedures do not make one ounce of sense.

It should be as easy as expediting the file since we already had a scheduled closing date but nooo……why make it easy it’s just a job for them. For me, it’s my life! For my family it’s the next chapter in our lives we are desperately awaiting to begin. It’s all the stuff I still have to get done before the actual move that I have no way of getting done because I have no idea when it’s all going to happen. It’s the attitude from everyone because this process has taken so long and has been so complicating as if it was my fault. I can guarantee I want this done and over with more than anyone on this planet!

And to make my stressful situation worse I get a notice from the court stating I have to file another notice for trial regarding my nieces custody hearing because I did not submit certain documentation, seriously! So I get in contact with the case manager because I know I filed it all and he said I don’t know why they sent you that we have what we need in the system but now they won’t review your case until you file the notice for trial, seriously!! How does that even happen? I guess they don’t really read the files now this is ridiculous. As if I have time to just run down to the court-house just because they made a mistake. Our system really needs to be fixed!  I have always had such good faith in people but I have to say lately, I don’t. It seems like every time I’m caught up, organized and having some good luck for a change in a split second it all starts falling apart with one set back after another. So over it all!!

The hardest goodbyes

When Sophie was about seven months old our pediatrician of over ten years Dr Ambrose Soler closed up shop, literally. He just closed up and left with no notice; he apparently had some personal issues. I don’t hold that against him he was a great doctor to my children. He gave me direction when I was lost. He told me I needed to stay home with Sophie because I was her greatest chance for survival, he guided me to get her into early intervention and was kind and hopeful. But when he left I felt lost, if not for my back up pediatrician Dr. Lourdes Nieves I don’t know what I would have done.

I remember our first visit with doctor Nieves. She was so kind and supportive, she did not rush and with detail took the time to go over Sophie’s entire medical history. She then comforted my lost soul and told me that only God knows how far my child would go. She told me never to tolerate someone who would set limits to who my child would become or what she may accomplish. I knew right then I would love her always! I had just had a negative experience with a neurologist and Dr. Nieves gave me the strength move forward and never allow it again.

She gave my children the most amazing care. She always took her time, she listened and truly helped me do the best that I could do to care for my precious little girl. She believed in me and always reassured me I was doing the best humanly possible. She listened to me and comforted me when I would have emotional breakdowns on our visits. She also reminded me that I was doing the best I could but ultimately when God was ready to take his angel back he would despite our best efforts. As hard as was to hear, I needed to hear it. She never turned my daughter away despite having two waiting rooms full of patients and was involved communicating with her other doctors and when she was hospitalized. I only have wonderful things to say about her. Last week while making a quick stop with Tristan for some blood work Dr. Nieves and her staff had this waiting for me in the office.

Brito Medical Center care package

They put together a care package with goodies for the kids and coloring books for our long drive to North Carolina with a card wishing us the best in our new home! How thoughtful was that?…

Today was our last visit with Dr Nieves before our move out of Florida, it was a difficult goodbye of many to come. She was not just Sophie’s doctor or the family pediatrician she is a part of our family. I may not have had the greatest support system with family but I am fortunate enough to have experienced the kind of unconditional love and support for my child and myself from someone who in an instant without history became part of our lives. How do you say thank you or goodbye to someone who gave you something priceless, your child’s life.  How do you walk away without telling them how much they mean to you and how much you will always love them. This is how I did. Last night I made a big batch of homemade chocolate chip bread pudding for the office staff and gave them a card thanking them for their gift and support.

And this was for the doctor. Of course I framed it so she could keep it on her desk and I have to say the visit was not without tears on both sides. Nothing I could buy her would ever be enough so I decided I would write to her. I wrote this poem/letter just for her and with our final goodbyes she got to see our Sophie walking, her emotion was just as strong as mine full of so much pride for our girl who has come such a long way!

A Poem for Doctor Nieves

Dr. Nieves and Sophie 6/19/2012

We love you Dr. Nieves!!!!!!!!!!!!!!

I will never forget everything you have done for me and my family.

God Bless you!!! 

 

My battle for medical records…resolved.

Here is an update on my previous post My battle for medical records. After posting this entry one of my fellow CDC mom’s Rachel felt my frustration and took it upon herself to help me out. She sent me a message along with some links where I found the Florida Administrative Code where it states the following:

64B8-10.003 Costs of Reproducing Medical Records.
Recognizing that patient access to medical records is important and necessary to assure continuity of patient care, the Board of Medicine urges physicians to provide their patients a copy of their medical records, upon request, without cost, especially when the patient is economically disadvantaged. The Board, however, also recognizes that the cost of reproducing voluminous medical records may be financially burdensome to some practitioners. Therefore, the following rule sets forth the permitted costs for the reproduction of medical records.
(1) Any person licensed pursuant to Chapter 458, F.S., required to release copies of patient medical records may condition such release upon payment by the requesting party of the reasonable costs of reproducing the records.
(2) For patients and governmental entities, the reasonable costs of reproducing copies of written or typed documents or reports shall not be more than the following:
(a) For the first 25 pages, the cost shall be $1.00 per page.
(b) For each page in excess of 25 pages, the cost shall be 25 cents.
(3) For other entities, the reasonable costs of reproducing copies of written or typed documents or reports shall not be more than $1.00 per page.
(4) Reasonable costs of reproducing x-rays, and such other special kinds of records shall be the actual costs. The phrase “actual costs” means the cost of the material and supplies used to duplicate the record, as well as the labor costs and overhead costs associated with such duplication.
Specific Authority 456.057(18), 458.309 FS. Law Implemented 456.057(18) FS. History–New 11-17-87, Amended 5-12-88, Formerly 21M-26.003, 61F6-26.003, 59R-10.003, Amended 3-9-09.

I then typed up this letter (below), attached a copy of the Florida Administrative Code and hand delivered it to the office providing a copy for our pediatrician.

Tuesday June, 12, 2012 

 Dear Brito Medical Center Management, 

 My daughter Sophie Deleon born 4/30/2009. Sophie who is legally disabled along with my five typical children are patients of Dr. Lourdes Nieves. I am relocating out of Florida and in the process collecting all of my daughter’s medical records because of her extensive medical history and complications. I have successfully and without obstacle obtained her medical records from her Cardiologist, Ophthalmologist, Pulmonologist, Audiologist, Gastroenterologist, ENT, Geneticist and Neurologist without having to pay any fees. 

 I am in severe economical disadvantage which makes it nearly impossible to pay for the medical records as your office charges per page. For your information I have also attached a printout of the Florida Statues, Administrative Code Rule 64B8-10.003 regarding records from physicians. 

 It is imperative that I have a copy of my child’s medical records to ensure she continues to receive the best care possible. I understand that you can fax her records to her new physicians but if a complication arises before I am able to get her new physician set up her records can mean the difference between life or death for her. While I understand you have policies in place you must also understand that my child’s life is more important than any policy. I understand  your facility stores medical records electronically, to facilitate the process, I have offered to provide a jump drive to upload her files and eliminate printing costs and labor time for your employees.

 Doctor Nieves is an amazing doctor and human being. She has provided my children with exceptional care. She has helped me keep my daughter alive against all odds and I will always be eternally grateful to her for that. She has come to know me, my family and my struggles as I have fought to keep my daughter here on this earth and my family together. 

 I do appreciate and hope that your office will cooperate and accept my request to waive any fees and allow me to have access to my daughter’s medical records as I am requesting. I will inform you that I did put in a call and left messages to the Agency for Health Care Administration and The Arc For people with Intellectual and developmental disabilities to inquire about fees for medical records regarding disabled individuals. 

Sincerely,  Charity Deleon

I had the incident on Tuesday, dropped of the letter on Wednesday and on Thursday afternoon I got a call from the office manager to bring a flash drive to my next appointment and she would give me my daughter’s medical records.

I learned this is just the beginning of our journey and advocate will be one of my main titles. Who knows which of my efforts paid off. Was the office manager not aware that there was a limit to what they could charge for medical records? Did she just have sympathy for the sleep deprived hysterically crying mother who almost brought her to tears? Did the doctor intervene and redirect the situation? Or did they realize how morally wrong it all was. Who knows what made them see the light….In the end my efforts paid off and I now have possession of ALL of my daughter’s medical records.

Even through the frustration I was not going to give up and my dedication proved to be successful.  

Happy Father’s Day!

My husband Felix and I met almost 18 years ago I never thought we would be where we are today. He wanted no children at all and I wanted at least six. After our first child Arturo arrived by surprise sixteen years ago he reshaped our lives more than we could have ever imagined. My husband became a father in all sense of the word. After that the rest is history!

On this day I want to tell him, thank you!

Thank you, for being there every step of the way.

Thank you, for loving your children more than life itself.

Thank you, for seeing your special daughter for who she really is and loving her unconditionally.

Thank you, for being such a hands on dad.

Thank you, for laughing and being a kid with your kids even when I wish you would grow up.

Thank you, for coming home and cleaning the house even after an exhausting day at work.

Thank you, for letting me sleep and caring for our children in the middle of the night and sometimes giving up sleep altogether so I won’t go insane.

Thank you, for supporting my decision and agreeing to help me raise my niece.

Thank you, for keeping your cool when I have my brief moments of insanity. You know I always find my way back.

Thank you, for being you a proud pappa! I love you, no one get’s me like you do…Happy Father’s Day!!

Daddy and Arturo Baby #1 Born 1995

Daddy and Emily Baby #2 Born 1998

Daddy and Gabriel Baby #3 Born 2000

Daddy and Elyas Baby #4 Born 2006

Daddy and Sophie Baby #5 Born 2009

Daddy and Tristan Baby #6 Born 2011