Monday, August 10, 2015

The Death Penalty for an Innocent Man, a War within Myself to Be Who I was Created to Be, And a Revelation to help!

God is SO GOOD and so helpful if only you let Him!  He is good and wants to give us peace.  He wants us to be who WE are, not who we think we should be based on the reactions of others.  He wants us to be OURSELVES even when we are at war within ourselves because we have conflicting components of who we are.  Our Heavenly Father wants to bring those conflicting portions into sync.
I promise, the end of this is worth getting to, it may be a message that He wants you to hear right now!  :-)

This afternoon I was in a low moment.  I was incredibly overwhelmed with the injustice and ignorance that is all around us.  Every place, every state, every country will have humans that are ignorant or blinded by "this is what we know," "it was how I was raised," and so on.  When we moved to Oklahoma my children were not yet in school and I was parenting 3 then 4 then 5 children all six years and younger.  I was focused on God, Work, and Supporting my husbands career.  When my children started school, as opposed to Home-school (because I believe that schooling needs are as unique as the individual so some of my kids are homeschooled and some are not...for now).  When my oldest started school I realized how different my upbringing in Pennsylvania (statistically in the top 5/50 schools yearly) was to the education system in Oklahoma (statistically in the bottom 5/50 schools yearly).  I realized how hard the teachers here had to work, or didn't.  I realized how important it was to have one of those gems that work for nothing to make Oklahoma's education system better even though the school boards and state is not always in sync with what the teachers know to be affective or needed in their jobs.  I have seen a great disconnect between a school board's theories of what will work and what the teachers are telling them that they need.  I have also seen a school board and a school that work together tremendously and impact the children in such positive ways that it seemed no different than my experience in public school on the East Coast.

I have seen the difference of growing up in a norther swing state as opposed to a southern, republican, conservative, Bible-belt state.

I have seen the difference in healthcare from an affluent tri-state area that is full of the top hospitals in the nation to a state whose medical is and can be compared to some under developed countries.  

Oklahoma has some of the highest incarceration rates, the highest children in child-protective-custody, the lowest scores in schools, healthcare and the list goes on.  

So, when three executions of men on death row happened in the past year under our current governor through lethal injection that was botched all three times and caused torturous deaths to these men I felt like I was taken back centuries.  Yes, PA still has a death penalty.  However, since 1976 there have only been 3 men killed in PA by lethal injection.  All three of those sentences were signed by the same Governor Tom Ridge, a republican.  

Now in Oklahoma Governor Mary Fallin is signing off on another execution for a man named Richard Glossip.  Richard was implicated and convicted in 1998 of a murder that was committed by a man who admitted to the act and the charge, but in a plea deal Justin Sneed, Glossips co-worker, accused Glossip of "paying him to kill" in order to save his own life.  Sneed is now spending his life in a medium security prison and will be essentially committing murder again through the hands of Governor Mary Fallin.  While two court cases have convicted Glossip of murder, the only evidence that they have is the admitted murderers plea/accusation of Glossip paying him to kill.  All along Glossip has been using pro-bono attorneys.  

For some statistics, Oklahoma is the second only to Texas for executions but is the highest per capita in executions.  To further muddle the executions that our Governor seems so readily to sign off on, Oklahoma was the first state to use phenobarbital as one of the ingredients in the lethal mixture.  Phenobarbital is a anti seizure medicine.  And, the one reporter Phil Cross who has been following Glossip and working very hard to get his story out there, to help him and to shed light on what is going on, has been banned from the court room while other reporters are allowed, and other reporters are claiming that they cannot talk about it.  The death penalty in Oklahoma has been under investigation by the Supreme Court over the past several years, it has made national headlines many times, and now even Hollywood stars are sharing their opinions and starting petitions to stay the execution.

NOW here is huge proof to the LUST OF EXECUTION for Oklahoma.  In 2014, Oklahoma had put scheduled executions on hold until the Department of Corrections implemented 11 proposed improvements in protocols governing capital punishment. The review of the lethal injection administration process resulted from an Oklahoma inmate's April execution case in which a doctor and a paramedic failed nearly a dozen times to administer an IV with lethal drugs.  From that, they continued under Governor Mary Fallin's approval to do two more botched lethal injections This will be her 17th lethal injection.  However, out of the past three Governors she looks like a lamb.  Her predecessor Brad Henry (Democrat) signed off on 39 executions, and 51 occurred under the Governor Frank Keating (Republican) before him.  Governor Frank Keating gave the go ahead for minors to be executed for their crimes and the last minor to be executed in the country prior to that practice being banned happened in the great state of Oklahoma under Governor Frank Keating in 2003!  Oklahoma has also been a state to wrongfully put-to-death prisoners.  (example:  Gregory R. Wilhoit convicted in 1987, exonerated in 1993.  Ron Williamson, Oklahoma. Convicted 1988 exonerated in 1999.  Although Texas and Illinois have had far more wrongfully executed persons, that we know of.)

So while capitol punishment is a heated debate with people for or against it and many people unsure of their feelings for it exactly, siting examples of when it would be ok and when it wouldn't, everyone can agree that it is an emotional topic.  However, Governor Mary Fallin has knowingly approved at least three lethal injections to persons knowing that the drug cocktail used has, each and every time, caused prolonged suffering and not sudden death.  Now, a man who was simply accused in a plea bargain.

So as my heart ached over all of this and the fact that I cannot rely on medical care in Oklahoma for my daughter, or the school system (not the teachers) I turned to my Bible and decided to do a study prompted by an old assignment my husband had for college.  In that study I decided to read about a book in the Bible, a person, and a significant place.  I am not going to share all of the details but I basically picked my favorites for each section, or the ones that made me joyful.  They were not the typical picks of say psalms/proverbs/job/etc.  I stuck with the Old Testament too.  The persons were not even the typical and each of them ended up being connected in intimate ways that I never noticed before.  For instance, the father of one of my favorite persons in the Bible was a ruler in the Book of the Bible that I chose.  Because the man's father is named but already dead and not talked about in the story of the son whom I admire so, I had never thought to look up his father, nor did I connect the dots when reading his fathers name in the book that I love and chose.  The location I chose actually stressed me out a bit.  I am a very visual person and wish that they had a "Biblical map" overlay that I could place over our Modern map to see the locations that they speak of.  So I tend to not pay attention to the location.  I asked my husband what location he chose to give me some inspiration.  I finally chose a location, and this location is central to the story of the man I chose and I did not realize it before.  

So, the point of my story is that God can affirm your purpose and your passions and he can show you His love and dedication to you, as His child when you simply open yourself up for his teaching.  Tonight it was as if I just ran my fingers through my Bible and asked Him to show me something (which I often do).  But it was with much less purpose.  I knew I was hurting.  I knew that I was warring with myself.  I feel very passionately about things and I know that I was created to be an activist.  Yet I highly dislike arguments or hurting/offending others.  Speaking about a persons home state in a negative way can hurt or empower a person to help make it better.  I know that I am at a giant risk of hurting people that I care deeply for.  But staying silent would be ignoring a part of who God created me to be.  He knew that I was feeling blue and fearful of how my words may affect others and He showed me that He is patient and loving and will always guide you to do what He has called you to do, even when you are afraid to do so.  

If you would like information on the petition for granting a stay for Richard Glossip click here!

Sunday, July 26, 2015

How Connected Are You To The Love of Your Life?

Announcement:  So this blog has been on hiatus on and off for some time now.  And it has been for MANY GREAT REASONS.  So, things are going to be different around here and I really think you are going to like it.  I am hoping to get some great discussions going.  And the more interaction I have on the blog the better it will be.  When we get great discussions going there will be #giveaways! *read to the end for more details on #giveaways* The discussions will be on everything from Book Talks, Social Issues/Current Events Or Relationships and Being Authentic in a Computer and Media Edited World!  Sometimes the blog will be serious.  Sometimes it will be a product review and other times I will share what I am loving.  And of course, our family, our life, and what we are doing will be sprinkled in as that was the foundation of Seven Swans!  My Blog Will ALWAYS Be Personal, Honest, and a Troll #NoHATE site!
 I hope that you join me on my journey, comment (you can leave it anonymous if you'd like) and share my musings with your friends. 
 I hope that it will bring a smile, a lightbulb, a wrinkle, and inspiration.  

So let's jump in today with the first in my series of "Relationships Under The Rug."




When you have been in an intimate loving relationship with the person.  The person whom you would take your last breathe for just to know that they could live another day.  The person that you know better than any other person, than any other person that has ever loved them knows them.   Yes, you know them even better than their Mother knows them.  You have a deep and meaningful connection, one that is not easily severed.  





However, with most things in life nothing is actually equal, or is it?  Do you ever wonder if you love your partner more than they love you or vise-a-versa?  Do you ever feel like they wouldn't even begin to understand your love no matter how hard you tried to show wether it be through actions or words?





Relationships are complex living connections and often times we see a portrayal of a persons actual relationship a superficial view and often times a facade.  It is almost a taboo in the USA to say your relationship is going through a rough patch.  When this is said it is almost always believed that this is the beginning of the end.  You can pick up any tabloid any day and find at least one article written about a couple that is "getting ready to call it quits."  Marriage in our country is under attack by the media and people who like to start the rumor train.  It is as if every public couple must be perfect and well not human.  Not human, because humans are imperfection and relationships are a unity between two people.  Marriage makes that unity stronger as it is a legal and binding declaration.

So, in an effort to be real.  To break it down and get the conversations going on the stuff that people would rather sweep under the rug I am pulling up all the carpet and banning throw rugs.  I want to know your thoughts on the connection in your relationship/marriage.  Is it something that you feel is equal?  Do you think that you love your partner more than they love you?  Or do you know that you are loved more than you love?



 



#RelationshipsUnderTheRug


#GIVEAWAYS will also happen
sporadically with product reviews, or for people who are engaged frequently with the blog!
And when I reach milestones I will be doing giveaways.  By Milestones I mean #'s of followers on here and on select social media, when great conversations are happening, etc.

Sunday, April 26, 2015

Greys Anatomy (If you haven't watched the last episode and do not know yet-how do you not know?)Spoiler ALERT!

Ok, this is not a normal post on my blog.  Then again, this blog has been going through quite a transformation, or has it always been a transformer?  Particularly because I write about what is hitting  me right in the face and how can that be anything but sporadic when that is exactly what life, or at least my life is, sporadic.  But that is not what I am writing about today.  I am writing about Greys Anatomy.  Yup, the TV show.  I do not often watch "TV" instead I subscribe to Netflix.  In fact, we have not had any TV channels for a little over 7 years!  Actually, I don't know if that deserves an exclamation point or not, because it seems that there are many people who do not spend $100 or more per month to sit in front of a TV every day at a certain time to watch specific shows.  Or maybe we are still a rare family?  I don't know how to do that...be that precise with a schedule surrounding a form of entertainment.  Seizures sort of set my schedule.  Kids definitely set my schedule.  I don't want to be stressed out and angry if my kids aren't in bed on time which causes me to miss an episode.  Or stressed out and angry because I got distracted and therefore missed an episode.  Not that everyone who watches TV gets so in to it like I might.  But alas, I am off topic again, in the first paragraph!!!

Ok, so we do have cable right now.  After the fire, the deaths, the surgeries, the accident, the everything we decided to get cable so that the kids could watch some of their favorite shows and movies.  We had not replaced many DVD's when we moved from the hotel to here.  The kids have extremely tiny bedrooms we literally cannot fit more than one bed table, two twin beds and squeeze one upright dresser in each room.  And toys are also something that was not a priority immediately following the fire, nor are they now, but birthdays and Christmas have happened, so they have toys that don't fit in their teeny tiny microscopic rooms.  On Sunday nights Avagrace (if she is up and able), Aidan, and I love to watch Once Upon A Time.  It is something I started watching on my kindle a few years ago and then was thrilled when it hit Netflix because I could share it with my two oldest who love fairy tales, especially when they are different viewpoints or an atypical re-telling.  Then a few weeks ago we happily started watching Dancing with the Stars, with me happily critiquing for all to hear how immodest the outfits were.  (What?  You don't do that too?  Weird!-jk)  I like to teach my children about what they will see in the world, when it is appropriate for each child, while also explaining why I feel the way that I do.  That way, they will have an adequate understanding for them to make their own decisions when they are at that point in their life.  Anyway, back to Dancing with the Stars....we do love to Dance, and the show is very entertaining, and it is a lot of fun voting together.  Not to mention Rumer and Willow are the two youngest and they are killing it!   

So that brings me to Greys.  The past week, or maybe it has been two weeks, we have seen the commercials (well to be honest I watch the commercials and the kids go out of the room during them) building up to a "shocker," a "you won't believe what happens," a "nothing will ever be the same again."  And I folded.  I have watched Greys Anatomy up until season 8 on Netflix.  I couldn't remember why I stopped watching it and figured it was likely due to being busy and having other shows that I enjoyed more, or that Brendan and I both enjoyed, or that were not so demanding of my time.  So I put "THE SHOW THAT WOULD CHANGE EVERYTHING" (aka the last and latest episode of Greys Anatomy) into my icalendar on my iphone, that way I would get a text reminder because lets face it, when the day is done i.e. dinner is served, I do not look at said calendar anymore.  

So this week Brendan left for a short-term deployment (I have a whole post dedicated to my love of hate for well, our current deployment).  So he is gone and I am home and my calendar reminds me to watch Greys.  Everyone was in bed and so I started watching.  I thought, what a great show.  Hmmm, some of the characters aren't in the show tonight.  To be fair I had not realized that I stopped watching it 3.5 seasons ago, I thought I was maybe 1.5 seasons behind, not 3.5!  I am watching as the scene unfolds and Derrick saves all of those lives.  And then it happens.  His car pulls out and I am thinking "Where did he pull out from, he had parked it in the middle of the road!"  and then his phone rings, "NO YOU IDIOT!!"  "You just saved lives you know cell phones are the last thing you hear before crunching of metal and breaking of glass."  And then it happens, and he is walking us through it all, unable to talk but able to think-so we hear his thoughts.  "Oh God I hope that Gracie isn't ever awake during anything that she goes through.  I hope she is blissfully unaware."  But I know that is not true. She is able to remember and explain what certain seizures are like after the fact.  She knows she can do nothing but wait it out and it terrifies her.  She is locked inside the seizure watching me tell her it is ok and to just breathe or me singing her song that I "wrote" for her.  And then, a major topic that should be covered more but is so sad to watch because it is reality.  Dr. Derrick Shepherd dies because he was sent to the wrong hospital that accepted him anyway.  And by wrong I mean, the hospital that was not up to the task.  The hospital that was filled with doctors that do not know their stuff.  And he died because of their lack of knowledge and inability to treat him properly!!!  

As a parent of a child with a rare disorder I find this too often.  I had a doctor watch as my daughters heart stopped because he did not recognize her status seizure was a seizure at all, even though I tried to get him to read a pamphlet that her doctor told me to take to the ER every time.  He didn't accept that it was a seizure until his nurse had to punch her in the chest to get her heart beating again.  Only then would he read the information that I had tried to get him to read when we had arrived SEVERAL HOURS prior.  It was information from the National Institute of Health describing her seizure type and why you should not hesitate to stop said seizure.  The irony is that the medics on the ambulance who took us to the ER had known about the seizure because they had witnessed our daughter have it before when her previous doctor still worked at the hospital that they took us too.  That hospital is supposed to be the best hospital in our state and it was not good enough.  Thank GOD that I still have my daughter.  

So Grey's Anatomy was definitely a heart breaker.  I cried.  I watched as a man who just saved lives (YES I KNOW THIS IS FICTION HANG ON I AM GETTING TO THAT :-) ) died at the hands of uneducated medical "professionals."  I decided that I would get back on Netflix and figure out where I left off and see if I wanted to get "caught up" with this series.  So I watched a few episodes.  And during every single episode I would cry.  I don't remember doing this before.  And then it hit me.  "You idiot,"  This is too real now.  This fiction is too close to your reality.  You daughter has had over 12 surgeries in her 10 years, and that is just one of your children's "surgery lists".  That doesn't even count all of the other procedures that she alone has had.  Let alone the surgeries and procedures that your other kids have had (be them typical or not).  Or the many other times she has been sedated for one reason or another.  That is just surgeries.  The emotions on this show are so close to real that it feels real, it doesn't feel like fiction and it certainly doesn't look like fiction.  That is one of the reasons that this show is so long lasting, and has such a following.  The actors both on-going and the many filtered in and out "patients " that may only get one episode or maybe one every so many seasons, they are really good at what they do.  The irony is that those actors portray the drama that parents like me keep held in and bottled up during our times in the hospital.  You do not see that much drama in the hospital- even though the drama in the real hospital is so much worse than that, because it is real.  Everyone is expected to remember their "P's and Q's" so that we do not impose emotions on others, or cause mass hysteria.  In fact, an emotional parent is the first parent that doctors will ignore.  They will therefore determined a child's case with absolutely no background or understanding of what is really happening with the child.   They will pass it off as if the parent is "over reacting" or "emotional" or a "helicopter parent."  Unless they are a good doctor but those are so hard to come by, especially when you are talking rare disorders.  You see, it is very rare to find a doctor who wants a parent to know more about a medical condition than they do...unless they are a good doctor and want to learn or a good doctor that wants his patients primary care giver to know, to really KNOW what is going on and how the parent can help!

I am sure that I will watch more "Grey's" episodes, but not in continuum.  It is too depressing.  I would like to get caught up and see why all of the men and apparently Christina too, have been killed off the show???  I mean seriously, is this just the Meredith Grey show?  (JOKE, of course it is, it is called Grey's Anatomy), but why?  Why do they all have to die?  It was bead enough when George died!  I also read that Christina didn't die but chose to leave?  But right now, I don't know if that is better.  All I know is that I am proud of the writer/creator, Shonda Rhimes, for calling to light a dark truth that many will never learn from that last episode with Derrick Shepherd, that medical facilities are not all created equal and that your life can be in the hands of untrained, uncaring, uneducated "professionals," so be sure that you trust your doctors and have done your research!  

One thing is right, the show will never be the same, and not because I am fan-girling Patrick Dempsey, but because you can only take away so many core actors and replace them before the show just fizzles out.  But that is all dependent upon the writers and creator, and the creator of this show has never ceased to be intelligent, in your face, or fearful of what this shows future will be.  She has taken it on a road that twists and turns and consequently ties your stomach in knots.  But how much drama can one person take?  I know for me and my own reality, I apparently tapped out at season 8, but I don't know that I have quite thrown in the towel.  Thank you Shonda, I hope that you tell the world why you chose to let him die at the hands of unprofessional professionals and truly shine a light on the truth about our countries "medical care."  If not, you have at least opened the door for people like me to write a real truth, in a wordy post, on an emotional parents blog.  


Monday, April 6, 2015

Peta, "Friends of Woodland Park Zoos Elephants," and Seattle-ights in this category....what is wrong with you?

Warning-long post....about OKC Zoo and elephants :-)

Is anyone else flabbergasted with Seattle and the people who are angry with the Woodland Park Zoo  right now and their anger that the elephants that they could not take care of are coming to the OKC Zoo?  The main activist in this is part of the group called "Friends of the Woodland Park Zoo Elephants"  Edited:  Here is a Facebook page of the group that I have now posted on, wondering if they have ever been to the OKC Zoo that they claim is so bad.  They have yet to respond but were quick to point out their fact list of why OKC Zoo is so bad, which I already addressed said facts in this post.  I suppose they only want to read articles and subsequently share them on their Facebook page, that are totally against all zoos all together.  So tell me, if GOOD zoo's are not allowed to exist because of the bad ones, where are all of the animals going to go now they they have been born and raised in captivity and have no knowledge of how to live in their natural environment...not to mention many Zoo animals do not have natural habitats anymore.  I also wonder if any of them supported the "Crocodile Hunter" aka Steve Irwin.  Do they know that the Irwin family owns a huge conservation Zoo in Australia that is doing marvelous things for conservation (like the OKC Zoo)?  Is that Zoo an "OK" zoo because it is owned by a famous family?  Or do they stick to their all zoo's are bad?  They are hell bent on keeping "their" elephants from coming to OKC, because they "care so much."  I wonder where those friends were when the previous two elephants died...(I will get to that in a minute).  Even Peta piped in (in a shocking-particularly uneducated way!).  They would rather the elephants go to a sanctuary that has one very large roaming area.  That area does not have a barn/enclosure.  The heard that is already in that sanctuary there has tuberculosis. And that sanctuary cannot afford to build one!  But to Peta and many people of Seattle this is what is best for elephants that they have not cared about before....keep reading and you will understand why I say that.

If the elephants from Seattle would go to the California sanctuary, that is full of TB and doesn't have a Barn or second "field."  They would have to be quarantined but they have no where to do that.  On top of that they said the second best place would be the sanctuary in TN that is not even sure of it's own future!  So all of these people are raising arms and even having their children "pray for the poor elephants" that are going to one of the most state of the art Elephant facilities in the country, OKC ZOO and Botanical Gardens.



These people that care so much did not care about the atrocities that occurred while these elephants were in the Zoo in Seattle.  You see, originally they were a herd of 4.  But they euthanized an older (but younger than OKC's oldest elephant) because it could not stand up one day.  After much searching I can find no information stating that there was no fight for it or alternative options evaluated with zoologists or elephant veterinary specialists.  THEN, as if that wasn't enough, their 6 year old elephants died from an UNKNOWN fatal case of herpes.  They found out how she died after the fact.  In the Oklahoma City Zoo and Botanical Garden​ (the supposed worst possible place for these precious girls) the elephant staff do preventative care and regular check ups of the heard of 5 (a new baby was born a few months ago!!!).  NOT ONCE have any of the elephants been sick in their care (at least since they have created the new elephant enclosures).  The arguments are that the elephants cannot roam and do not have as much space per elephant as they do in Seattle.  Well when you calculate space based off of half of your herd of course it will be more space.  I will mention what their enclosure looks like in a moment.  When it comes to space...These elephants have always been zoo animals and elephants are very social and emotional animals.  They are healthiest when kept in the lifestyle that the are use to.  And they are endangered animals and need conservation and proper MEDICAL CARE!



One of the factors that is so important for these two elephants is one is younger and one is older.  They are bonded and elephant bonds are so intense that elephants that have outlived their love have been known to literally not move, or eat, and sink into a depression and then starve themselves to death because they are in such mourning!  One of the biggest arguments from the Seattle and Peta people that hate the OKC decision enough to take it to court (court over turned their arguments and said that OKC is great for them) is that OKC zoo has an elephant show where the elephants "perform."  I don't know about any of you but I have seen the elephants "perform" on their playground (part of their grounds where they roam) without a single trainer/handler in or around their pen.  I have also had the show go on without the elephant because the elephant wasn't in the mood!  The show is an educational display to teach the conservation that OKC ZOO is doing!  As well as to teach children and adults alike about the amazing Asian Elephant!!




Another one of the naysayers arguments from Seattle is that it is bad for the elephants to be so close to the amphitheater because the loud music and occasional pyrotechnics are bad for them.  I do not know if the elephants are bothered by the music/shows that happen on weekends in the summer (and not every weekend but that doesn't really matter).  I have been at the zoo during a show and have never seen the elephants display any sort of agitation frustration or stress signs.  In fact, my daughter is very sensitive to crowds and loud noises (any reader of my blog knows this but if you are new she has rare seizure disorders that cause her to seize anywhere between an handful and hundreds of times a day).  And none of us have ever been bothered by the amphitheater.  It was never so loud that we couldn't hold conversations or even walk ahead of each other and call back to each other while walking around the zoo with our five children.  BUT because of the amphitheater they would rather send them to a TB infected field that could not afford to build a barn/enclosure/shelter...smh

Another argument is that OKC temps are too different from Seattle, both colder and hotter days.  That is why they have an enclosure with climate control.  Do they think that weather does not happen in California or Tennessee?  Tennessee gets a lot more snow than we do.  I feel like this is an extension of their tantrum when OKC bought their failing NBA team and then treated the team better than they had been treated in Seattle, which will happen for their two elephants headed this way!  I am so glad that the medical team in Oklahoma will get their hands and eyes on these elephants to make sure that they are healthy and continue to be so.  I am also happy that the younger elephant has a chance of bonding with one of four other female elephants, Asha, Chandra, Malee (the first baby who is about 4/5 years old I cannot remember off hand), and Achara (the new baby).  OKC has set the bar for elephant care - super high and it really ticks me off that people would be so blinded that they would rather put the elephants in harms way just because they think it is more important to have a free-for-all field to roam in than a "zoo."  I am sure that if the OKC zoo could make larger pens (their pens have a play area, a waterfall, GREEN GRASS (the Seattle elephants enclosure from the pictures that Seattle shared-is all dirt), and friends!  They also have a barn with stalls and open areas to walk and be treated.



OKC zoo also does not keep secrets about their animals.  Visitors can view inside the barn, the birth of Achara was filmed.  I will admit that watching the mama elephant give birth with cuffs on her feet was very upsetting to me, but that is because I also prefer for animals to be in natural habitats.  However, in conservation and saving endangered species different measure have to be taken and the OKC zoo had no problem explaining why she was delivering the way that she was.  They do not shy away from the care that they give because they have nothing to hide and nothing to be ashamed of.  Moreover, if you read anything at all educational about Asian Elephants in captivity and especially Asian elephants breeding in captivity you will note that it is very often the case (around 50% chance) that the elephant calf will die within the first month.  This is due to improper care AND improper environment, aka enclosures.  Yet the OKC zoo has welcomed TWO healthy baby girls into the herd with absolutely no illness occurring before or after their conception.  Finally, the OKC zoo does not plan on separating mama from baby.  This is a very bad thing to do to Asian elephants as herd bonds are permanent in their social structure.  In fact, there is one case of a wild Asian elephant witnessing her baby being killed by farmers "due to an accident."  *Warning this is graphic as is the link to an animal planet explanation*  She declined so rapidly in mental state and blamed humans to the point of being the only elephant on record to consume humans!

OKC's elephants have never shown any signs of being unhappy or agitated and the care given to them is obvious when you visit the zoo.  When the elephants need rest and a break from humans watching them they get it, and you can even check in via their elephant cam (I am not finding the link but have watched before-it could be a seasonal thing not sure).... Keep up the good work OKC Zoofriends​ Okc Zoo​

Sunday, April 5, 2015

He is Risen! The knowing of eternity...when dealing with Loss and what God taught us through the death of His Son!

I have been wanting to post over the past week or so, to show you some really sweet flower clips that Avagrace was given to wear on her helmet, or to share some of the other "happy's" that have happened over the past week or so.  You know that little things that mean so much.  But to be honest we have been going at a full sprint and haven't had the chance.  I try to post in Instagram when I am unable to write, edit and post what I have captured, or even update Facebook.  But with our house MANY MONTHS DELAYED and the major problems associated with that, I have spent most days on the phone (which I detest) talking to our insurance company and hoping that they will continue on this new kick of integrity or trying to keep our builder honest and praying that there will be NO MORE delays!  We cannot take another one-literally, it is too expensive and it will ruin many things that we have in the works.

Easter from 6 years ago!  Oh my goodness, look how long Gracies hair was how how little the three littles are!  And Aidan's face, so Aidan!  I love this so much!

But that is not why I am writing this today.  Today I wanted to steal away for a few moments.  Moments to share what has been on my heart in the midst of all of these trials.  You see, I am keenly aware that over a year ago our child's doctor told us that she had one year to live.  I am also aware that she is not a text book case of any one medical condition.  In fact she has three main diagnoses that make her anything but predictable.  Even still I know something that some people do not.  I know that God is our creator and that only He knows the number of breaths each of us, including my oldest daughter, will take.  I know that He is the Master Physician and that HE has divine authority and ability to use all things for the GOOD OF THOSE WHO LOVE HIM!  We have free will.  We are not robots nor slaves.  We are adopted children of the King of Kings and we are open for His intervention that could come or not come, at any moment.




We have SO MUCH to REJOICE about (hear the JOY in that word?)  Today of all days, on Easter Sunday we are reminded that HE HAS RISEN and that because HE paid the price of our sins, we no longer judged by our works to gain entry into HIS EVERLASTING KINGDOM.  We are BOUGHT AT A PRICE.  We have been given a membership pass to STREETS OF GOLD!!  We have A ROOM IN HIS HOUSE prepared for us BY JESUS!!!  He has OVERCOME DEATH and owns it! 

And here is my HOPE and MY FAITH....What I KNOW to be true and what I pray over my friends who no longer have their *child* in their arms because their child has gone on to be with our Creator.  Because of God sacrificing His One and ONLY BEGOTTEN SON, they/we will be in heaven with our children in our arms again!  And oh what a reunion that will be!!  If only you BELIEVE and ask Jesus to be your Lord of Lords, YOUR Savior, to take up residence in your heart and to guide you through this life!  A simple question, a life changing decision that will call you to Higher Ground.  Although His YOKE is easy and His burden light, that does not mean that there will not be temptation and things to trip you up causing you to stubble and fall away.  That doesn't mean that you will be perfect or sinless.  That doesn't mean that you will not make horrible decisions at times.  You may even break the law or fail to show love (the first and MOST IMPORTANT COMMANDMENT).  The important thing is that you keep picking yourself back up by His outstretched hand.  That you continue to redirect your life and continue to ask that He will help you and guide you.  Just like taking your thoughts and emotions under your self-control to find the JOY, you must use your self-control to follow Him and HIS WORD!  



Being keenly aware that in each moment it is vital to grab ahold of my emotions and my thoughts so that I can choose Joy and choose freedom from the weight of the world.  I want these moments to count.  I want my days and hours with my children to be permanently etched into my brain.  I want to know that I have done my best and made the best of it.  I want to know that I fought for them and rejoiced with them.  I want to make a difference and I want to live in the hear and now.  I want them to know that I am present, in this time, in the now, with them, experiencing life together! This does not mean that I am perfect or even good at doing this.  It is work.  It is a constant redirection and reminder.  Some days it is easy and some days it is very very hard.  Today, after a long night of seizures, followed by my own anxiety attacks from lack of sleep and being a caregiver that witnesses so many seizures in my own precious child each day.....the struggle is very very real.



Yet today of all days I should be rejoicing more.  I should be able to be in control more.  Referring to self-control.  Yet I am weary and when I am tired everything is harder!  I have heard that so many times in my life but never fully grasped it until the very beginning of this year.  You see I had a sleep study done because my husband told me that I was snoring and some of the other medical things that I was experiencing can sometimes be manifestations of sleep apnea and misdiagnosed as something more serious.  In my sleep study we found out that I was never making it past the second stage in sleep and that I was waking up due to lack of breathing 59.6 times an hour.  You read that correctly, I was waking up just about every single minute.  The doctor explained it to me as being tortured for years by my own body.  You may think that is extreme, if so feel free to read this article from Psychology today.  I am not sharing this as a "poor me."  I am sharing it because it was shocking to find out and AMAZING to learn.  The very first night of sleeping with a CPaP machine changed my life.  I am not joking or being dramatic.  I only was able to sleep for 3 hours and still had many "episodes" of not breathing.  However, I woke up and felt like I had the best night of sleep since became a mom almost 13 (oh my gosh that is a whole other blog-YIKES) year ago!  If you are struggling with sleep, please do not be hard on yourself.  Please try to rest even if it is not in the typical schedule or pattern that is recommended to keep.  Some sleep is so much better than no sleep.

*Up until this point I have been talking about parents that have lost their children.  This is something that I see around me regularly.  It is something that nobody wants to see and something that nobody wants to experience.  This is not to say that what I am writing is not applicable to my sweet friends who have lost their twins, their siblings, their moms, their dads, their husbands, their friends, the family or other loved ones.  I still find myself mourning the loss of Breya's twin (lost in the second trimester).  Identical to Breya, one of the cutest most determined kids ever.  Grief is Grief is Grief.  It is not something to judge.  It is relative to the person and the life in which is mourning.  Mourning and grief are not negative.  Grief is not something to be fixed.  Grief is something that one must endure to transform the pain.  From grief one goes from visualizing what was lost and never experienced (the sad) to visualizing what they have experienced during the life and from the pain (the blessing/joy).  Less than a year ago my Grandmother, my second parent, my love went to be in Heaven.  How I miss her.  How I wish that I had more time with her.  Yet the times that I had with her, the things that I learned from her are so much more valuable now.  I appreciate them so much more.  From Christ's death we mourn the suffering that WE put Him through and we have Visual Proof of what our poor decisions do to others.  We learn to visualize the consequences of our actions.  We better appreciate the weight that was spared from us so that we may live free from any sort of pain for eternity.  Without His pain the multitudes would not have been able to walk through the Gates of Pearl.

The kids and I with my Grandmother "Nanny" Virginia less than a year before she passed.

Without the loss of many of the lives that I have seen end in this world, handfuls to thousands of people would not have learned, loved, or been saved by organ donation, organizations that were started to provide life saving medicine or medical devices for people who could not otherwise get them.  Support groups for parents in the thick of caring for a medically fragile child would not have begun.  Awareness and education would not have happened.  Research on safe sleeping positions for infants would not have saved the lives of other babies who might otherwise be lost to things like SIDS.  From death comes new life.  Christ modeled this and His creation copies this in various ways.

**A different sort of child loss...I have lost children in utero, as I mentioned above in regards to Breya's twin, at varying times of their development.  It is not something that I like to talk about or think about.  But if you have lost a child just as soon as you found you were pregnant or you have delivered a stillborn baby.  I firmly believe that in your womb as God was forming your child, He already knew your child and how long your child would live.  Life begins at conception and just because the child was not ready to take a breath on their own that does not make them less of a child.  That does not mean that God started a "project" but "didn't finish."  God created a baby and just like any of His children He gave it to you for a time and called the child back to Him in its own proper timing.  Mourning for the loss of this child will still occur as you did not loose a "lump of cells" you lost a child that you will meet in heaven!



Friday, March 20, 2015

In Response to Eva Mendes' Claim That SweatPants Are The Number One Cause of Divorce

It is an extremely rare day for me if I feel it is necessary to write about what someone has said that I disagree with.  Looking back over my blog I can not find a single instance in which I talk about someone else.  It is even more rare for me to comment about something "negatively."  I will tell you my opinions and be honest to who I am but it is always self inspired and never stating or quoting what someone or some company has said or done.  Even on my YouTube channel I will do favorites videos but try to steer clear from my "worst products," "Don't Buy," or "Product Fail" videos.  The only time I do that is if someone has asked me to give an honest review and I unfortunately do not like what they sent me-which is why I am very choosey in what I accept.  The same is true here on my blog.  The only place that you may see me speak out against ignorance is on my personal Facebook page.  However, Eva Mendes's recent interview with ABC News is one of the most superficial, ignorant things I have ever read.  No seriously, it is in my top 10 and perhaps if I thought about it more it might be in my top five.  I really hope that she was being sarcastic or joking, but that does not seem to be the case.

In the article Eva says that "the number one cause of divorce in America [is} sweatpants."  And that she "won't do that" meaning wear sweatpants.  Interestingly enough a quick google search of "Eva Mendes wearing sweat pants" will bring you to pictures of her leaving a "spa post work out massage" wearing pants that look to be sweat pants with open ankles (not elastic ankles) among others.  However, I will stick to her statement for arguments sake.  So, to say that my husband, who actually finds sweatpants sexy is completely bonkers compared to the rest of the nation and that I am just one lucky lady that he likes it when I, on the rare occasion wear sweat pants is absurd.   (I will note that I say rare occasion because I live in a warmer climate and sweatpants are too warm for me otherwise I have no problem with them).  I can understand where she may be going, to say that when a person no longer cares to get dolled up for the husband like they did prior to marriage can be discouraging, or it can be comforting because you are past the insecurities and have a love deeper than the superficial.

Interestingly Ok Magazine found this picture and a slide show of others where she wore "designer" sweat pants.  This picture though, is not "designer" they look like regular sweatpants to me.















The other thing I would like to note is that Eva Mendes giving marriage advice is humorous considering that she is not married.  On top of that research, you know the legit kind that universities do and then publish in peer reviewed journals...not celebrity interviews; they state that co-habitating prior to marriage, having children prior to marriage, and being insecure among a few other things are the ACTUAL most common causes of divorce.  It would seem that her sweatpants theory is a bit of an insecurity, especially coming from a 6 month post-partum, single (as in unmarried), co-habitating mom.

Instead of shaming women for wearing sweatpants perhaps Eva could instead read up on the real reasons for divorce and instead try to empower other women and empower herself.  She has long been named one of the Hollywood Beauties and in that same google search you will see her posing in a wide variety of fashion ensembles.  She also has said that she "avoids jeans at all cost" despite wearing them and pants in general often.  I am sure the pictures from that last link are exactly what Ryan Gosling came home to every day since the birth of her daughter.

However, there is something that I agree with her on and that is the fact that women wearing dresses is a beautiful thing.  I do not prefer pants but that is my own personal opinion and I do not think that the wearing of any type of pants could/would/should ever be the cause of a man to walk away from his marriage vows.  For such a beautiful woman (both on the outside and on the inside from the little bits that we see in interviews like this one) who worries about embarrassing her daughter or doing things that her daughter will not be proud of just told the women of America that sweatpants are the number one cause of divorce.  I would certainly hate for a woman who was left by her husband to have one more reason to blame herself for a dead beat walking out on her.  Or for a teenage girl to have any other reasons to feel insecure.

Next time I hope that she will keep her insecurities to herself or at the very least avoid calling them facts.

Saturday, March 7, 2015

A blog post that is just a hair different from my usual content :-)

I had an amazing day that I will write about tomorrow!  But Quickly I wanted to share a hairstyle that I tried today!  I followed this tutorial (2 parts linked below) on YouTube.  It was a great tutorial-easy and cheap!  Plus it was also efficient with my time!!  It took some time the night before but not too much.  I am sure it would be so much faster once you got use to it as well.  



Unfortunately, it was made for thick hair, that does not have to use hair spray (although she explains how to use the hairspray if your hair does not curl easily-so that is also a plus).  I ran out of hairspray after only a handful of curls and the results taught me that doing it without hairspray wouldn't work at all!!  I also learned that for my thinner hair it is better to do more curls with smaller amounts of hair, than to seperated the curled sections the next day.  If your hair is thin and hard to curl, then the less you mess with the curls afterwards-the better!  You will also want to spray your hair with hairspray after the curlers are removed.  



Unfortunately, the style does cause damage to thinner hair when taming the frizz and curls at the end of the day.  Plus teasing your hair is an obvious way to damage your hair and so I try to avoid it but when I pull my hair half up like I did with this tutorial I always tease it for volume.  

Lastly, if you are going to be in the car and have a headrest or something to rest your head on it is very possible that the curls will fall out like mine did.  

(After only a few hours -not even half of the day-all of the curls that were not sprayed with hair spray prior to curling have fallen dramatically)


So, smaller sections with more curlers, definitely use hairspray before rolling on curler, and spray with hairspray when you remove the curl from the curler!  

This is a neat and new look that I want to try again, and hopefully perfect.  This will be a special occasion "do" and while it is easy and quick, it would not hold up for an every day look as much as I wish it would.  Maybe one day I will master a way to make it last!  

One thing to note is that NOTHING has ever given me this much volume at the end of the day, so if I need volume-now I know what to do 😉!!


Tutorial Video Part 1:

Tutorial Video Part 2:

I hope that you enjoyed this blog, it is not something that I typically do here.  I am having a lot of fun stretching my "share level" by sharing a wider variety of content.  😊




Thursday, March 5, 2015

Every Child is Uniquely Different Despite a Text Book Diagnosis

It is common knowledge that every child is different.  It is something that parents embrace and use as a tool to calm ourselves when our child may walk later than others, like when one of my children didn't take her first step until she was 15 months old, she didn't even like standing or try to stand until 14 months old.  But she was not my first or even my second and so I reminded myself that each child is different and I knew that she would stand and walk when she wanted too.  Besides she was doing other things, like climbing lol.

When we have a child with a rare diagnosis we tend to forget that each child is different and we instead go by what the doctors say is going to happen and by what the text books say is going to happen.  We even will go by what the internet will say is going to happen or if there are other children that we know with the same diagnosis (or even similar diagnosis)-we go by what they say is going to happen.  What we fail to remember is that every child is different.  And while you and I may have children with the same diagnosis or very very different diagnoses, we do face similar situations.

"A Doctors Predictions or Text Book Diagnosis, Does NOT a Stone Course In Life Make."  

When our doctor told us in January 2014 that Avagrace had a year to live, I tucked it away in my mind.  I listened and I knew that this was something that I needed to deal with and accept.  However, I also knew that GOD is the only one who ever knows what the future holds and how many breaths we will take while we are here on earth.  Fortunately, I can say that while she is still the same girl with the same diagnosis, she is also stronger than she was a year ago!  I don't mean in the "she's healed" sense, but rather in the determination and mind-set sense.  Although, getting the VNS out did bring some healing, it also was no longer on board to stop some of her most regular seizures.  (good and not so good in everything right!)  So, Avargrace is stronger in many ways.  Her heart is handling the seizures better and she is more determined to power through her set backs.  The text books would say that when the regression happens, the child will likely continue to regress and not regain what is lost.  In our case, Avargrace will regress and she continues to regress but she also regains what is lost even if it is only for a short time before she looses some of it again.  The amazing thing is that certain memories are stronger than others and her adaptive skills have always marveled us.  While she may not tie her shoes the way others do, she CAN STILL TIE HER SHOES :-) in a way that she created because she saw the end result and was determined to get to the end result even when the way we taught her didn't make sense.  

Avagrace is still developmentally between the ages of 4-6 (she is going to be 11 this summer).  But when talking to her you wouldn't be able to tell right away.  And while our days change literally from one moment to the next...she can be in the wheelchair unable to move half of her body or talk and then later that day or week she is able to skip...there is one thing that doesn't ever change.  

And that is that she is a unique individual who was fearfully and WONDERFULLY made, by our creator.  She was given her amazing personality and she is in HIS plan.  Each and every single person on this planet is in HIS plan.  Your child is a PRECIOUS GIFT FROM GOD.  He did not make a mistake creating them and they were not flippantly or coincidentally given to you.  God chose you for this very special child.  He made you and your child a perfect match to show the world what He is made of.  

He is made of JOY.  Joy is something that we all have the ability to have, if only we change our perspective and hold on to the choice that we are given to experience HIS plan!  He didn't promise that we would always be happy about it or that we would ever be happy about it.  But He does want us to see the Joy that comes new each morning.

He is made of LOVE.  To love another with no expectations.  To not look at your child and think, you should be doing this.  Or I wish I had this from you.  But to instead see how amazing it is to have the connection that you do.  To be able to meet their needs and show them what LOVE is and what LOVE feels like regardless of the number of breaths that they are given.  

He is made of POWER.  God's power is beyond anything that we can imagine or fathom.  He is able to create and it is able to heal.  He is able to chip away at a bitter and hardened heart and make it soft and pliable.  He is able to use your child's unique life to change the lives of one nurse, one doctor, one friend, one person walking down the street.  He is also able to use your child to change the hearts of millions.  Your child has a purpose.  Even if your child never uttered a single cry or sound.  God does not need us to do anything to accomplish His plans.  But when we open ourselves up to be used by HIM and we realize that our children are actually HIS children on loan to us, well that is where the real power lies!

As for our children, who are each different and unique and not defined by a diagnosis or a doctors prediction.  Our children are the utmost example of what it is to LIVE for HIM and HIM ALONE.  Let that sink in.  Many of our special children do not have "free will."  They are limited by their bodies, their minds, etc.  And while everyone is born with free will spiritually.  It is especially hard for someone to act on free will that does not have the ability to act on sheer determination.  They are living in HIM, for HIM, and by HIS WILL.  

It is not the doctors nor the diagnosis, not the science nor the averages of case studies that determine how their bodies will live with their diagnosis.  Each and every child, each DNA, each environmental factor, each treatment plan, each and every factor that plays a part in this child's life plays a part in that life.  But ultimately GOD is the one in control and HE is the master physician who will give life and bring life back to Him.  So seek Him with all of your heart and I guarantee that if you do, you will find HIM, and His peace that surpasses all understanding.  

I know that Avargrace and all of my children are here on loan from the ONE who created them.  I know that according to the science she will not have as long of a life as her siblings may have.  But I also know that I will not know when any of our "times" will come.  And so I snuggle them all a little more and remind myself to be grateful for each moment, even when I am separating an argument for what feels like the 50th time today or trying to follow along with my long-winded child's story that started over 30minutes ago (I have no idea where they get THAT ANNOYING HABIT FROM). ;-)  

So please, do not be discouraged in the comparison game.  It is easy to teach that to daughters and sons in who may be self conscious.  But trust me when I say that it is even more difficult to heal from the comparison game casualties when you are thinking about a special needs child and your expectations or dreams, than it is to change your perspective on your own self-image/worth comparison game scars.

*Peace and Joy do not mean that their is no grief or sadness.  Peace and Joy are the constants (the anchors) that uphold us when our emotions of grief and sadness try to pull us under.

Thursday, February 26, 2015

A Letter To The Special Needs Mom

I saw you leave the office, with a wee one in your arms.  You were crying and quickly averted your eyes and tried to hide it.  Your daughter is beautiful, she gets that from you.  Although your heart is hurting now, for the many dreams that you had for the life of your child now lost, you will rise up stronger than before.  You do not know it yet, but this time of mourning and what you are mourning will in fact be your greatest blessing.  But do not rush things.  Mourning the loss of all of the dreams and goals that you thought would come is something you must do.  It is something that you will continue to do over the years at various points and everything is more difficult when you are tired.

That being said, resting is vital.  If you are unable to get a full night sleep because you are worried about your child, here are some things that we have done to make sleep possible.  In our situation our daughter has seizures every night.  So, for a long time our daughter slept in our room.  As she got older we got a lot of judgement on having her in our room.  Especially when people would see or hear that instead of having a master bedroom and a room for her, we had a room for her with her bed and a queen sized bed in it for us.  I would sleep there every day and Brendan would join me on the weekends. The other room had a bed for my husband to sleep in during the week, so that he would be rested enough to function for work.  There are still times during the day that I will lay down with her or "hold" her very tall ten year old self in my arms in the recliner and rest with her as she sleeps in my arms.  These moments are some of my most cherished!  Just a few short years ago she was more stable and we more confident, we moved her into her own room-the closest one to ours.  We got a seizure/movement monitor called an EmFit monitor.  We got a video baby monitor that allowed me to talk to her, hear her, and to see her.  We also made sure that she had a safe bed, and safe bedding.  Basically we thought through everything that we could do to ease our anxiety.  When I still couldn't sleep after all that we did I sought help from my doctor.  I was going to a counselor so I talked to her too and then the miracle for me came I learned that I had sleep apnea and was not getting past stage 2 of sleep.  I was literally waking up 59.6 times an hour!!  The first night I used the C-Pap machine I only slept for three hours but woke up and felt like I could run a marathon!! I fixed the problem of not being able to sleep and I was no longer anxious all the time.  It wasn't a magic fix, anxiety is still something that I deal with regularly (and is completely natural for parents of special needs), but when I have actually slept-even if it is for just a few hours-I am much more able to handle what the day throws at me.

Aside from sleep the very best advice that I can give you is this.  Trust yourself and your "instincts" "gut" "hunch" "feelings" whatever you want to call them.  You see your child 24/7 and know them better than any doctor ever will.  In fact the very best doctors will tell you this.  I am not saying to google symptoms, come up with a diagnosis and tell your doctors what is wrong:-).  What I am saying is that if you feel that your doctors are not listening to what you have to say...  If they are being dismissive or only taking into account some of the symptoms that you are dealing with, than you need to speak up for your child.  My biggest regrets over the years all stem from a time when the doctor was telling me something or not listening to what I was telling them and making a decision that did not make sense but that I went along with because they are doctors and I am not.  There have actually been a few times when if I had not spoken up it is very likely that Avagrace would not be here with us today, in fact the doctors told us that she wouldn't, it was a lesson for them and for us.  There are also times when if I had spoken up we may have gotten her the help that she needed sooner.

However, I mentioned the word regret.  Regret is a terrible thing and something that you should avoid at all costs.  I know that sounds like a no brainer.  But do try to steer clear of the what if's.  What if I would have pushed the doctors more when I felt something was wrong but they dismissed it with the blanket statement of "kids do weird things?"  Or what if this happened because of XYZ?  What if this is my fault because I carry a genetic defect or what if my husband and I together create a genetic defect?  Stop those thoughts dead in their tracks!  Shoo them away and never welcome them back!  YOU are in no way at fault for any of this!!  This is not your fault and there is no way to reverse time and take back the knowledge that you now have but didn't have then.  Moreover, there are more diagnosis out there than any one person could count or study.  In fact, we have met more doctors that do not understand our daughters diagnosis, let alone have seen it or understand it, than the ones that do.  Her diagnosis is a Neurological one and I am talking about Neurologists and ER docs and even pediatricians that had NO CLUE!  The good ones will say," I am not familiar with this."  They may ask you questions and hopefully will say "let me look this up and I will be back shortly."  So again, you are your child's best resource and you are an expert on YOUR child!  Nobody else will know as much about your child as you do.  Do not be afraid to question and speak up.  If your doctor is offended by this than it is time to move on to a new doctor.  If you do not have that option (we have been in this situation too) then pray and research doctors out of your area and look in to what it will take to get an opinion from a different doctor.  Many insurances cover out second opinions or changes in doctors.  Some do not.  It is a tricky situation to be in and I am not here to tell you what to do, but rather to encourage you to trust your gut and be confident in your wisdom about your child and work to find the best doctor that you can have.  This is invaluable.

If you are anything like me, you are much better at the written word, than the spoken word.  I can be a terrible communicator if I do not have something written down in front of me.  When I am writing the words just flow.  But when I am speaking, things come out jumbled, I forget names and words and I sound like I do not know what I am talking about.  So I have a file that I bring with me.  A small one to carry everywhere, and a larger one that I keep in our daughters "ER and Seizure bags" so that the info is available when it is needed.  I also have practiced explaining the diagnosis many times and will practice the points that I want to go over at the doctors office.  I will also bring a check list with my questions etc.  This might not work for everyone but it is a life saver for me.

When you were pregnant you prepared for everything, except this.  It is not a common for expectant parents to think about having a child with major medical challenges.  It may be a fear that crops up but usually that fear, unless tests and diagnosis show otherwise, is quieted by your doctors and family.  "It is not common" "There is no need to worry" "Everything is going smoothly"  "Everything will be ok."  And that is true, everything will be ok, but one persons ok is certainly different from your ok.  So take the time to mourn, mourning is not negative, being negative, or being pessimistic.  But don't forget to pick yourself up, brush off the dust, and get to know your new normal.  Bitterness is negative and it is something that will vie for your affections often, but do not let this wear you down. Find scriptures or favorite quotes and place them around your home to encourage you and to remind you that you have a rare gift.  It may not be what you were expecting and anticipating but you will see the beauty in the chaos that is your new normal.

Normal is such a strange word.  Every single person has something that they have gone through or are gong through that is challenging, heart wrenching, and yet beautiful.  From pain can come the most glorious beauty (as a Christian I am often reminded of excruciating pain and torture that Christ suffered on the cross to bring the world the beauty of everlasting life.)  So when you see your friends children or your other children developing in the typical progression, try to remember that we are all individuals and that mourning is not negative.  However, when you do reach different milestones, which are different for every special needs child, from your child learning to swallow, to tracking objects with their eyes, or maybe their first words in sign or voice....regardless of the milestone those celebrations and appreciation for the progression will be so much more meaningful and lasting than those milestones which were expected.  When you expect something it is exciting to experience it, but when something comes that you never thought would, now that is a true marvel!  I will never forget the joy we had when our daughter learned to read.  We were told that she would never be able to accomplish this, but she did and it was magical.

I know that your child is small and you probably still have that connection that all new moms have with their babies.  It is as if you can just understand what it is that they need or when they need you.  While this is not a perfect brain to brain telepathy, it is something that I still experience with my 10 year old daughter even though this has long faded with my other children younger than her but no longer babies.  Even if you do not know what they need all the time, you are your child's best advocate and voice because you are equipped to handle whatever road bumps may come-even if you do not believe it, you are.

Along the same lines your heart will forever live outside of your body, for all of your children, but most especially for the children that need you the most.  No, I am not saying that you love one child more than the other.  However, you will experience such a storm of emotions each day.  Plus, every new challenge and new opportunity to defeat said challenge is yet another way that you solidify your connection with your special needs challenge.  Instead of wishing that your child would just be quiet for one minute (although I can't promise that this feeling won't come, especially if you have a house full of typical children that are particularly chatty lol) with this child you will cherish the noises that they make even if they are unable to say a single word, because some special needs parents are never able to hear their child utter a single word-let alone I love you.  A dear friend wanted me to add that you may not always cherish these sounds, she has a child who cannot speak but wails or yells throughout the day.  It is much like Dory in Nemo trying to speak whale :-)  This mama has to wear ear plugs, but she still loves to hear the noise because it means that they have an open airway and are expressing themselves.  She says that you can definitely tell when he is happy yelling and unhappy yelling even though he does not produce tears, and when he stops his type of song she knows that something is wrong.  You will learn to love the gestures of love that they show you and you will look for them, just like you would with a typical child, even though these actions will be different.  But you will feel it and you will know it when your child calms when you are near, or stops crying when you pick them up, or does whatever they are able to do to show you in their way that you are their number one!  Just be on the look out for all of the lovelies because those lovelies will get you through your hardest times.  From another friend, cherish their precious features and the things that they enjoy, because it is these pieces of their individuality that you will cling too when times get tough.

Being a special needs mom will also strengthen your relationships with your other children.  It is amazing to see your children rally around their special needs sibling.  Wether it is to love on them, protect and stand up for them, learn about their diagnosis, or see the beauty and uniqueness in others that they may never have learned how to do.  I am very blessed with a 12 year old who actively seeks out friendships with kids in his school who are special needs.  He has made it a point to defend those who are teased and to reach out to the lonely kid.  Despite his sweet character I do not think that he would have tried to do this so earnestly unless he saw all that he has seen in caring for his sister.

Along this journey you will see the best in humanity and some of the worst.  You will be encouraged and heart broken.  You will see adults that act like children, and children who act better than any adult you have ever met.  You will hear standard compliments that are often back handed compliments even though I do not believe that people mean them as such.  You will have people who don't know what to say.  And you will have the people who say way too much.  One of the reasons I did not approach you today (although there were many reasons) is because I can sometimes say too much.  I didn't want to be in your face, inviting you to a support group, and giving you my information when you already had so much to process.  Sometimes, having other mothers reach out to you is overwhelming.  But it is going to be one of the very best blessings along this journey.  Getting plugged in with other parents, wether it be in person or on a Facebook group that was created for your child's diagnosis or for children with rare disorders in which there are now diagnoses.  Having that group to be involved in a little or a lot is always helpful.  Moreover, being able to help others in a time when you feel like you need more help than you can give, will actually bless you tremendously.  When I visit friends in the hospital with their children, I always say it is a selfish thing for me to do and I firmly believe for me that it is.  Because I do it for two reasons.  One is because I love them and two is because I do not want them to feel the loneliness that I have felt.  Even if I know that their family is here and that they have had an abundance of visitors, I still try to visit.  That is because over the past six years I can count on one hand the number of visitors that have come to see us during our many hospital stays.  It has actually gotten to the point that I do not share when we are in the hospital because I do not want to hope for company and just be lonely again.  And just in case you are on the loneliness end.  Just remember that God is always with you and that your child needs you more than you need visitors.  Sorry for the side track...back to online groups, one group I belong to has people that post every single day.  I on the other hand will post in reply to others and then I generally post when things are at the extremes of fabulous to needing prayer.  But without those groups, I would not have met some of the most amazing mothers on the planet.  I would not have learned some tried and true techniques for dealing with all sorts of issues that may crop up, and I would not have the encouragement of families across the globe that can empathize and truly understand what this life is like.

While it is true that you will loose friends who are unable to handle or understand the challenges you may face.  You will be blessed by knowing who your true friends really are and who you can reach out to-to bless and be blessed by.  This is a very valuable lesson and a very painful one.  But I would rather know who is for me so that I do not waste my very little extra energy on those who are against me.  The more difficult thing is when your child wants/needs friends.  Some special needs children are cognitively aware enough to know that they are lacking in the friend department.  And while they are medically fragile and you are constantly combating germs I urge you to include your children in programs that are either designed for special needs or not if or whenever possible.  For instance our daughter loves girl scouts and while we have not been able to go for literally two years, she still loves it and cannot wait to go back.  Many organizations such as the Girl Scouts will welcome your child with open arms and the children are much kinder than you would think.  I will say that it is harder though as they get older and the children are on age level when yours is developmentally many years younger.  But if you are open and discuss with the troop or group of children what is going on with your special needs daughter you will see the love and acceptance from children who are also learning a valuable lesson in life, to love without expectations.  

Dealing with people online has not been as welcoming as dealing with people in person.  People can be very brave behind a keyboard.  However, if you do choose to share your story publicly, you will see that there is plenty of good that comes from the bad.  You will have many "rubber neckers" as Brendan and I like to say.  They are the people who are just there to see "what happens next."  You will get the people who are the worst and down right hateful.  Use that block button freely!  I just want you to know that this is a risk and you would be surprised at what people say online or to your face, but especially online.  The best part of sharing our story online is not that we are raising awareness, that is a close second.  But for us it is because we have a prayer army at our fingertips, full of genuine people who love our child and our family and pray for us and with us- from all over the world!  That is powerful!  And as I said before you will be raising awareness and helping people to see that special needs children are valuable people too!  I may end up writing another blog about the boundaries we set up in choosing what we share and what we do not.  But for now I want to keep things as simple as possible.

One of the things that I have done very-very wrong for the past 10 years, has been to care for everyone else and neglect myself.  I put off my own doctors appointments.  I eat when I get a chance instead of purposefully eating regular meals throughout the day.  I eat leftovers and even though I am a health conscious cook for my family, leftovers are usually the least healthy bits of the previous meals.  Therefore I am not making sure that I get my protein, vegetable, and fruit intake like I should.  I also do not set aside the time to exercise daily like I should.  Instead I fit it in here and there at different times throughout the week which is the worst possible way to form a routine or habit.  And now that I just typed the word "routine" I laugh.  It feels pretty impossible to make a routine and stick to it when seizures, who come and go as they please with no rhyme or reason, dictate your life.  However, I am both a creature of habit and a person who thrives on order and routines.  And so for me, I have purposed this year to take my health more seriously by taking care of myself and at least setting daily, weekly, monthly, and yearly goals and then organizing them with desired deadlines.  Or at the very least some sort of configuration for the daily and weekly goals.  And while it is already February and I am still trying to feel my way through this, the part of me that is being purposeful about this is already feeling healthier and more stable despite not having anything "written out" quite yet.

As my poor brother will tell you, there are times that a word can cause me to snap.  Unfortunately, my brother was shocked by my reaction when he said something that I completely misunderstood.  It was not mean or hurtful but a truth in a situation.  The word that was said is one of the triggers that seem to carry me away from the location that my body is in and back into the diagnosis room.  The room when all of my hopes for this being something that she will outgrow flew right out of the window.  And while that day will forever be marked D-Day in my mind, I would not be the person that I am today had I not been given this amazing child.  Who is the strongest, bravest, most positive person that I know.  She gets knocked down, literally, every day.  But still she comes back and fights to be able to do what her brothers and sisters are doing, what she is interested in, what she wants to accomplish, and what her therapists/doctors/parents want her to accomplish.  She works hardest for those that she loves, and she loves BIG.  Because when she smiles, as Louis Armstrong would say, the "whole world smiles with [her]."  She is a gem and she has taught me more about life than any class in my younger years or that I ever took in my behavioral sciences degree program.

No matter how long you have been doing this, you can never know what will happen next.  Fight for the future, revel in the present, and learn from your past.  Nobody knows how long of a life you will have.  You could be gone tomorrow.  Unfortunately some medical conditions make us all the more aware of this.

I have been to more children's funerals and remembrance ceremonies than I ever thought possible, and I know that my number is just a drop in the bucket compared to some of the leaders of a rare children's support group that I am part of.  It just isn't fair and I really hate that this could be us someday.  In fact I refuse to think about it.  I pray that God would take everything away before he takes any of my family.  Even though I know that it doesn't work that way and that God is control of everything and everything that is His plan is perfect and better than my plans ever if I do not understand it and do not want to endure it.  We share information about Avagrace and her condition, within the parameters that we have set.  We participate in several epilepsy organizations.  And we homeschool Avagrace.  I participate in a support group that means the world to me even though I have not been able to go in quite some time.  They probably think that all I ever do is talk because by the time I get there I am like a volcano ready to erupt because I know that whatever I say stays within the group and they actually understand what this life is like.

I have known one child that an entire state seems to know.  Because of her diagnosis her mom was prompted to change the state practices for the good, start a support group, and reach out in so many more ways that I could list on this blog.  She has shared what it is like to bring your daughter home on Hospice and watch her slip away to heaven in her parents arms.  This mom is amazing and has become a face for special needs families.

I have known a wee one that lived for a little more than an hour and her life was no less valuable than any other.  She reached thousands of people from across the globe in that hour, she was also able to donate organs to save lives and aid in research.  Her parents and siblings continue to share the love that they have for her while raising awareness.

I also know of a very sweet family who is very private.  Their family and close friends know about their sons rare diagnosis as does their church and their sons school.  They do not participate in fundraising or put their sons story online or in writing.  They are active within their diagnosis foundation, meaning they donate to help find a cure and they go to medical conferences, but they do not allow their son to be named on the foundations website or registry.  Their son goes to public school.  They have had a tremendous impact on the ones close to them.

Impacting someone is what is important and what will change the world and help you to take this challenge and make it a force for good, the number of people you share with is not important.

Sometimes raising awareness, and reaching out to other parents like ourselves (meaning other parents of special needs kiddos), is all that we can do to make this life a little brighter.  Additionally, the more people that learn about special needs and medically rare children, the more research can be done to make their lives a little bit brighter.  But it also can speak volumes to people on how to love others and how something as small as a frozen dinner, or a little help with laundry, can literally change the lives of families like ours.  Even if it is just a one time thing, that gesture can renew our spirits so much that we are holding on to the excitement of that love for weeks, just like a kid with a new Christmas toy.  If you have a church or a family or a friend that offers to help (I am speaking to myself here too, because I am terrible at this sometimes) please allow them to help!  It is a blessing to both parties.

So to the lady leaving the doctors office.  I do not know you or your precious child.  But what I do know is that your child is wonderfully made and made in HIS image.  She was not a mistake air a mishap.  She was chosen and you were chosen for her.  What I hope that the doctors told you in the diagnosis room is all of this.  And I really hope that people/doctors/nurses/therapists/friends continue to tell you when you share with them about your child is that your child is a blessing.  Your child is special, 'she' is unique, and 'she' will make you appreciate each and every day more than you ever thought possible.  You have hit the lottery, the jack pot, and while it will be challenging-nothing worth anything is ever easy.  Even typical children bring challenges (especially 12 year olds who are wise beyond their years lol-jk).  But it is all relative.  Relative to your wisdom, knowledge, abilities, and circumstances.  You are on a different road and should not compare yourself to others, although it is hard not to.  You will learn to appreciate the little things and realize that life is about the little things.  You will be stronger and able to handle set backs without a second thought or glance and you will be able to see the positive in situations where others only see darkness.  You will rejoice and appreciate each accomplishment that your child makes and you will be more purposeful in looking for the positive.  These are just a few things that I have learned and that I wish someone would have told me in the very beginning.  So that when I got the diagnosis I would have found ways to be more positive instead of laying in bed at night and just crying and thinking of the worst.  I never imagined that I would get to my daughters 11th birthday that is coming up in June.  In fact, this time last year I was told that she would have been gone by now.  But nobody knows that information, aside from our creator, and the good thing is that I will continue to learn and see true and tangible miracles as will you!  As I said before it is all relative, so one lesson for me may not be as valuable to you.  But I hope that this helps in one small way.  You can do this and not just because you have to, but because you are fully capable of moving mountains, just believe in yourself and your abilities as a mom.

I do hope that I see you and your adorable daughter again.  Next time maybe I will have the courage to say Hi!  And next time, I hope that you have found a rhythm to your life that helps you to smile more and cry less.  I will be praying!

Sincerely,
Virginia