The Problem is....

Life is not respected.

Tragedy can be boiled down this statement.

If you peel away all the layers when you see stories in the news what is going on? Murder, assault, theft, and self harm. -  If life was respected would someone  take the life of, or harm another living being with such ease- as a society what would our reactions be- would we watch news reports of these events over breakfast, lunch and dinner with casual abandon?

 For just this moment I am going to take all religion out of the equation and state that if people respected life these things would happen much less; We would watch the news and be struck with horror when events did happen. We would stop and share tears and moments of silence like we did on 9/11 - Just imagine if we lived in a culture that was taught to respect all life from beginning to natural end.

Several years ago I stopped watching cable TV. When we moved to Huntersville  I decided to not have television programming at all. We do watch movies, but I monitor what my family is exposed to. It has been known for  years that violence in the media has a  negative impact on young minds.  Again I revert to respecting life would we find pleasure partaking in viewing entertainment with violence as a central feature? Likely not, we would react with different feelings because of the respect we have for the sanctity of life.  Where does it start though- how did we get to where we are? How do we change it now? As Pope John Paul said we are in a "culture of death." 

I have a few ideas, but those are not what this blog today is really about. If I were to start on that platform my intentions for today would be lost. So I will leave the thought in the air and save it for another day- and move along to the real reason I opened up this entry-

If we don't respect life at the basic foundation how we we to expect people to treat the most vulnerable among us? Our disabled and the elderly? The disabled and medically fragile have my heart. Heather Riley is both. Recently I saw a story posted on facebook about two paraprofessionals in Atalanta abusing autistic students. School Administration was told of the problem by the teacher and the teacher was ignored. As I read the article my blood boiled. How can adults charged to protect our vulnerable ignore this? How is is acceptable to ignore allegations of the abuse these children were enduring- Children unable to speak up about the way they were being abused? If you can not handle yourself in a better fashion it is time to walk away for your job and do something else.

Those of you that know us in the "real world" or follow us on FaceBook know the multiple issues we have had with nursing staff for Heather. Many people know I home schooled her for many years as well.Placing Heather into public school was difficult. Trusting someone you do not know with your childs life is difficult enough when they do not have a disability, it is magnified when there is a disability.

I have been heavily criticized by family and even some friends for being (the irony) overly critical of people that care for Heather in different settings. There are several reasons for this. The first thing I should ask is - Am I really overly critical or is it protecting Heather Riley. When you see stories like this one it is easy to understand why I am so careful about who is with Heather when I am not around. Andrew and I both protect Heather and Brittany with a love that is fierce.

For a moment lets talk about what would happen if I did not monitor the actions of staff with Heather.  In March of last year when we moved here Heather had a nurse that took her for a walk on Gilead Rd. This is busy street, she became over stimulated and had a melt down. This took place during a period of intense change for Heather. It was not authorized by either myself or Andrew. The nurse just did it, as she wanted to go shopping. She ignored signs that Heather gave indicating she was tired and over stimulated. This nurse (this professional) did not respect another persons rights as a human in order to meet her own selfish desires.  As a result Heather did what she knows to do, she had a melt down and lost control. This nurse was injured during Heathers fight/flight response. Heather was handled roughly, fortunately she was not injured and only her clothing was torn. The Huntersville Police were available to assist Andrew and Brittany in getting Heather and the nurse back to the apartment. The nurse was relieved of her duties.In this instance I ignored my gut feelings regarding this individual (because I am hyperaware of my critical nature) and I gave her multiple chances to prove she was a "good" LPN. Unfortunately this was the wrong decision- The list of issues we have had with what should be professionals is long- There are times that staff has been under the impression they were alone in the apartment with Heather but in reality they were not. Heathers sister has been in her room with a migraine, and has heard everything that has taken place. The reports I have gotten have been upsetting. Heather is talked to very differently when some staff members are alone with her. We have had staff members that were simply incompetent. One nurse was administering routine medications while Andrew and I were downstairs talking, Britt witnessed a obvious seizure, the nurse was oblivious to it. She never reacted to all three of us rushing in to manage it. She was relieved of her duties that day (that was not the only issue, she also thought IVIG was given in the g-tube) Still another staff ignored Heathers complaints of pain for an entire shift while her infusion infiltrated into her chest, she reset the pump multiple times due to alarms and error messages according to the days nursing notes. -These same nurses and still some others have talked roughly to Heather out of our presence and handled her roughly.

At school Heather has a wonderful nurse and only minor issues-

When it comes to our special needs children as parents and caregivers we must be diligent and we must make our presence known. We do not live in a society that respects life or the disabled as a whole. Sadly I have lived in a bubble for a long time, leading myself to believe that all people are good and all people love each other and treat one another with respect. I thought until we moved here that nurses could be trusted to give medications according to the MAR. I wish there was a better way to handle this, I wish I didn't need staff to assist with Heather, unfortunately this is something we do need. I pray every day that soon Heather will be able to care for herself.

God has been merciful to us by placing a few very amazing people in her life to lead us and protect her.

Sharing a few Photo's and Random thoughts.

One of the things I love about the blog is the ability to share photos. Caring Bridge gave you a limited ability to share small photos. With the blog, I can share photos that you don't need a magnifying glass to see.





 "If you want to know what a person fears losing watch what they photograph most"













This Easter we were missing Toria. It felt like something was missing from the day, but as the girls get older and start lives of their own I realize it will be harder for us all to be together every holiday, especially since we live in three different cities now. Sarah purchased her first car and made her first trip to visit us by herself. I am proud of the beautiful young woman she is becoming.

Britt and Sarah are close. They have a beautiful bond. I wish they could spend more time together. I hope that this summer they are able to, we all need someone we can confide in. Sarah is that person for her. One of the things that hurts my heart about the relationship Heather and Britt have is how they can't have that kind of bond. When they were little I always wanted them to be close. Toria and Sarah are close, it was always supposed to be Britt and Heather that were close too. Britt and Heather are close and have a beautiful relationship, but it is different. 

Toria is getting ready to graduate from UNC-G. She has become a beautiful woman. She is finding her way in the world like most 20 somethings. I know the future is bright for my girls. I pray they find the right way in the world and are not lead in the wrong direction by the wrong people.

 Andrew and Britt play tennis when we go to one of the several area parks. Britt loves tennis. They both are fairly good players. I am still trying to convince Heather Riley to join me in disc golf, she proclaims the game is boring no matter how exciting to try to make it for her.. She doesn't like tennis either. She is more of a baseball and soccer girl.

Every Saturday Heather as Miracle League softball. She enjoys playing every weekend. Even though she has played for several years she still needs a "buddy" to keep her on track and she still refuses to go on the field without Andrew. Heather is a character.















                                                                                                

One of our favorite places to go is Freedom Park. I have been taking Heather there for several years. Dr.Parrotts nurse, Leigh and I would have lunch there years ago when Heather had appointments in Charlotte when Dr.Parrott first moved to the area. Freedom Park is a beautiful park in Charlotte, NC.

 I love to watch Andrew and Heather play here. The love he has for she and Britt amaze me. There are times it overwhelms me to try and grasp how someone can love little girls unrelated him.. I watch him interacting with such tenderness and affection, . When I see Heather looking at him and I realize how much she loves him in return it is more than I can grasp, my heart swells with joy and I thank God for allowing all of us to experience this kind of relationship, this kind of love. It is something each of us needed in our lives at the exact moment it happened.

ProGuardian Research Study.. in, then out...

One of the many things I am thankful for is having a neurologist for Heather that is on top of research and development; be it medications or devices. Several months ago Dr.N talked to us about a device called ProGuardian. This device is supposed to detect seizures while a patient sleeps, and alert you at the start of the seizure. I expressed interest in it, the forgot about it.

Fast forward to last week, we were enrolled in the study. I had very little detail- just a call telling me when and where to have Heather. So I did. Heather was enrolled as patient number 013. Lucky number 13. When I discovered what participant number she was I should have taken that as as sign that this was going to be some what of and issue, should have know there was going to be trouble in paradise.

Andrew and I sat with Heather and the lady from the research department at Dr.N's office as she explained the details of the program, it seemed very simple. We take the device home and use it every night for seven days. There is a caregiver questionnaire notebook with 7 days worth of questions. She explained how easy it is to set up, some of the questions we needed to answer are- does the device detect seizures accurately, what kind of seizures does it pick up, were there seizures missed, is it easy to use. The device was a mystery to us, sitting in a big white box. An exciting mystery.

At the end of the appointment we are handed the device and a urine specimen cup. Heather Ri has to give a sample. - not good- this is never a project that goes well. She is already stating she isn't going to go. I go with her to the restroom, she throws the cup across the room, I knew this was not going to happen! It took several conversations between Dr.N and the research department, but eventually we got the green light to leave without filling the cup.We left in anticipation of opening the box.

Once the day was done and we got home the box was unpacked and instructions were read. Andrew is much more technical minded than I am. I checked out the parts while he read the instruction manual. The set up was quite simple. Proguardian is a wireless device.  Currently the only thing I have is a pulse ox monitor. This is a device with tons of wires everywhere. Proguardian makes no noise unlike the persistent beeping of the pulse ox. The device detects changes in heart rate and movement.


The device picks up the signal by way of a smaller device clipped to a sticker that Heather was to wear on either her chest or back. According to the warnings she couldn't wear it on her chest because she has a VNS implant. So the only option was her back. The back was listed as the least desired placement, but the only option.

                                                         

   At the end of the first night the alarm had gone off several times. I was tired from the constant alarming. I was also upset with the realization at just how many times each night Heather is still seizing..








This what the Proguardian screen looks like. The average length of time between seizures all night long was about like this as well. You can see why I am disappointed and upset.The seizures listed here were all detected by changes in heart rate first. When I came into her room due to the alarm I witnessed Tonic Seizures. Most of the seizures I came into the room for the night of monitoring were Tonic seizures. There were a few that were myoclonic clusters but mostly just Tonic Seizures. It is disheartening and amazing that all this time I really thought her seizures were so much better controlled. We knew she was having atypical absence as well as myoclonics during the day; those have not been that bad though so we have considered them "under control." For a child with Lennox Gastaut Syndrome  "seizure control" is different than what you might consider it to be for the average person with epilepsy. A good day may consist of anywhere from 10 to 50 "minor" seizures.

Feeling defeated the first day of the study I was called by the research department to clarify some information- several times. The final call from them came late in the afternoon, it was bad news. Because Heather did not provide the urine specimen she was being disqualified from the study. Simply put, she had to provide it the first day. As crummy as it is, all of the requirements have to be met. When conducting a study everything has to be in place, all i's dotted and t's crossed. As disspointed as I was, I accept it.

We returned the device, but did get good news, they will be conducting another study with the device soon. This study will be twice as long. Heather will be considered for this study. They certainly need kids that seize and seize- a lot.

There is also another study that will open up in his office. in the coming months I am not at liberty to talk much about whats going on now, but there will be a study for Epidolex in his office. Everyone is very excited. I have read concerns people have about Epidolex v/s Charlottes Web. I have to say I have fewer concerns about Epidolex. In another blog I will talk about why and all the things I have considered. I realize this is a hot topic so it deserves it's very own space, this blog is about ProGuardian, a very cool device that I hope will be available to everyone very soon!

Failures and Triumphs

Some days as a parent I feel like a complete zero.. wait, strike that.. A lot of days I feel like a complete zero. I look around me at other families, I listen to conversations, I observe interactions between parents and children, siblings, grandparents, moms and dads, aunts and uncles. I even look at interactions online (which I know, can be, entirely false) and check out pictures of interactions. My entire life I have been intrigued with sociology.

I remember as a kid watching people and wondering not what they were doing, but why they were doing it. What caused one person to react a certain way. I felt like if I could understand the "why" it would make everyone able to function as a group better. It all boiled down to understanding. I approached my grams once with this idea because I did understand the reason for a behavior after watching someone for a period of time. I was reprimanded and told to stop making excuses for this person. As an adult this natural instinct would help me understand the unique social challenges two of my children had and one continues to face.

There is a vast difference between making excuses and taking the time to understand a person. I do not want to make excuses for anyone, I simply take time to understand, I am not quick to judge, and do not base everything off of my own life. I try to look at things from multiple angles, more than just my point of view- my opinion is really meaningless- unless you are asking me about my life experiences. Things are never simply black and white. If that were the case life would be very simple.

Each individual processes the world in his or her own unique way. We all process information based on what we know, think and feel. Those things come from many facets of our life. For example a puppy that has been loved and adored will see a person reach out their hand and feel no fear, he may get excited in anticipation of affection he has received it in the past; or a treat such as  bone or a toy coming from the hand. A hand drawn back may bring more joy as as signal of playtime. Another puppy that has known abuse will see the hand and may withdraw and whimper out of fear or become aggressive as the hand comes down;regardless of the hands intention. What if this puppy has been inconsistently treated with both kindness and malice?Will be know how to react? If you find this puppy and he growls as you what do you do? Should you smack the puppy? Or treat him with kindness? Which behavior will instill trust in a puppy that has been abused? and what if this is simply a poor behavior that needs correcting in a rough puppy? Certainly you don't want to reward the puppy for poor behavior. Only careful observation of the overall behavior of the animal will give clues as to why the pouch does what he does. People are the same way. Careful observation with no preconceived notions can tell you a lot about what is going on. Why someone does what they do, is just as important as what has been done. It is foolish to think otherwise. 

Over the last few days I have been dealing with a personal situation that has made me look inward. This situation has caused me to stop and consider my home, my life, my past, my future, and most of all my ability to be a parent. Truth of the matter is I am a failure. I fail every day. I make poor choices, I don't always do the right thing. I have wondered if I ever did do the right thing. I had a conversation that made me feel guilty for every single complaint I ever launched on Caring Bridge or Facebook, or out loud into the universe.  I was taken back to a place emotionally I never wanted to go again. I felt like I was not allowed to have thoughts or feelings like everyone else. I felt like I am supposed to keep every thought that isn't pleasant to myself. That was the moment that it clicked for me; that has been part of my failure to my children.

For years I hide everything from them. They saw so much, they saw a lot more than some kids, but there are kids that see and experience much worse (so lets not be over dramatic) What they never saw, or never knew was what I felt. To them nothing affected me. I kept everything to myself. I was able to take the harsh words, I was able to take any kind of abuse that came my way and hold my head up. I took it and moved on. The message that was sent was that this was acceptable behavior. Not only was it acceptable behavior, but I was to accept it and not complain about it, or tell anyone. Those things stayed within the confines of our home. They were never spoken about.


Children, people of all ages really, need to express their emotions, their thoughts and their feelings without judgements in a safe place. The people you love most should be those people. The ones you feel safe talking to. Your inmost angers, desires, irritations and joys should be freely shared with out the fear of being judged based on your statements. If you can't do that, then you may need to reconsider your relationships. What if, however you do not have the ability to share your feelings? What if you are paralyzed with fear when it comes to allowing anyone to see how you feel? For each of us this is an issue. We all deal with it differently. I have a child that can not express herself appropriately, so now she acts out.

What happens when you move from an environment of chaos into peace? Some people are left feeling very uncomfortable and have to create chaos. That is what we are dealing with. It was quiet for too long. One of the children is unable to maintain in the environment of peace and quiet. As a mom my heart is broken. I have tried to reconcile myself to the idea that I did everything I could, but the truth is I didn't. I could have done so many things differently. I could have lived a different life. I could have been a stronger person at various points in my life. The truth is, at the time I made each decision I did what I felt was the best for my family at that time. Hindsight is always 20/20. - and advice from the outside is always the "perfect and right" thing to do.

Tonight I can only celebrate the fact that I know where she is, I can pray that the Lord guides her heart. I can pray that as a family we get peace from our past and peace in our future. I can pray as a mom for wisdom in making decisions. I openly admit my faults, I confess I am flawed, I strive to be a better person every day, I fail, I thank God for tomorrow to try again..

My Official Protest Post & Intentions

Yes, this is it. My protest... I do not like the Caring Bridge format change at all. I tried, I did some serious pep taking and it just didn't work. I  chronicled Heathers journey from a "simple" epilepsy diagnosis to the catastrophic Lennox Gastaut Syndrome. Our family has been through many changes over the years, the laughter and tears are found in that journal. I do not plan on closing it. I will keep it there. I am not ambitious enough to move all of that here. I do not have the kind of time it would take either. Even though Heather is stable for the most part, we live a very busy life. I am starting this blog with the best of intentions, I actually hope it will be more successful than the journal was becoming.

So, with that said- why else am I protesting Caringbridge?  Oh, there are a lot of things that over the years I saw and did not like. Unfortunately as many of you know I stopped following other children quite a few years ago. The ones I had grown to "know" I starting to talk to on FaceBook. Carinsbridge became a little bit like a virtual High School. It was all about popularity, I even heard moms talking about it in various circles I was a part of. Who got the most guest book signatures, who had the highest number of visitors and who was the sickest kid on the block. In this kind of arena I certainly don't want to be any of the above. Honestly I always wanted a typical life and found myself amazed at that type of competition. I stopped online support groups because of it and over time pulled away from a lot of other special needs activities as well. I have always been here for those that found their way, I am always willing to help anyone that asks but I do so with caution. There are just to many people with unattended to mental health issues.

Instead, here we are, in our little corner of the world. I will share with you in a way I feel comfortable. I will continue to share our life, but instead of a focus on Heather Rileys medical journey with Lennox Gastaut Syndrome this is the journey of our family.

Everyone has a story to tell, each person is a unique individual rich with a history each his own. It is the way in which we tell our stories that makes all the difference.
 Lives are lived, and our tales are told..
 This one is ours...