Raising Hell, Awareness, and 1 hell of a Football fan!

On August 24th, 2013, the Philadelphia Eagles beat the Jacksonville Jaguars 31 to 24 in the pre season. It was also the day I was admitted to the hospital to induce labor. We had 2 reasons to be excited that day! Not only was the team we love starting off on the right foot, we were going to meet our baby girl! I remember watching the game on TV, Jay wearing his football jersey and the Doctor's face shield, goofing off at the foot of the bed in a receiver stance. 
Because Jaylyn's issues were not known until after she was born, labor was induced slowly, and she was born the next day. In hind sight, it was very much like watching an Eagles game. We had so much anticipation for a win! We had such high expectations for a perfect "season". 
Of course as Eagles fans, that doesnt always seem to be the case. The ups and downs much like a roller coaster ride. It very much parallels Jaylyn's life and the challenges she faces daily.
Yet despite those challenges, she presses on. Like a determined athlete, she pushes herself to find a way to succeed and achieve. Jaylyn was dealt a life of many challenges and she has risen to each and every one and being a fan of the Philadelphia Eagles has played a huge part in that. Jaylyn is non verbal. She doesnt even say "Mommy" or "Daddy", BUT she does say "Eagles"! Every game, Jaylyn can be seen clapping and saying "Yay Eagles"! Jaylyn has significant physical limitations and was not expected to walk, yet her first attempt at taking steps independently was initiated by her hearing the Philadelphia Eagles fight song. 
So although Eagles fans typically have a bad reputation, and we often hear trash talk about encouraging Jaylyn's love of football and the Eagles, we are proud of our little Eagles fan! She is an under dog, just like the team we love. If only the Make a Wish Foundation could grant a super bowl win...

Cram all of those lists of do's and do not's!

In this day and age, social media really plays into the hypersensitivity of others. Someone is always offended over 1 thing or another. The world of special needs is no exception.
I belong to many groups and like pages, and not a day goes by where I dont see a blog or article posted regarding what to do or dont do or say or dont say to a special needs parent or child.
News flash! The world is not going to walk on egg shells or tip toe around a possibility of a hurt feeling.
This may sound harsh, and I have had some really down right rude things said to me about my daughter, including her being called a "fucking retard", yes that is offensive! Yes that more than warrants being upset. However, there are many well meaning people in the world that really truly do mean well, and to be offended over that and whining about it over the internet is getting old and tired.
Yes there are legit "well-meaners", that despite how much you advocate and educate, can still say some hurtful things. I have had that happen too. But ask yourself, do they really mean to be hurtful? Definitely not! More often or not, well meaning suggestions and comments come from people that truly do not understand your child's diagnosis no matter how much you explain it. Hell, I have been on this journey with Jaylyn for almost 2 years, and there are still things I do not understand, and Im a special needs peds nurse! Every day is a learning experience. I have even been floored by comments from my peers and fellow medical professionals. I have had E.R. docs that reviewed Jaylyn's diagnoses before examining her walk in and say "wow, I was expecting her to be a vegetable!". Yes, we are just as amazed at her progress despite what she has been through! (See what I did there? Turned a possibly offensive negative into a positive😉)
Its comments like these where I feel I am given a choice to be offended or not. Sure, it took me by surprise, but if I take a minute to reflect on the positive meaning, is it really offensive? NO! I am very proud of the fact that with all of our hard work and determination, Jaylyn is doing so fanfreakintastic, that she shocks and amazes doctors!
Then there are the more common cliche comments people often make, and there are hundreds if not thousands of blogs that reference them as being offensive. "God only gives special children to special people", "she looks normal", "at least she doesnt have________(insert worse problem here)". Sure, I can see how this is offensive if I am always on the defensive, but consider the source and true meaning from the individual who is saying it. Do they truly understand? Do they really know what to say? Are they meaning to offer words of comfort? Are they in amazement because of the diagnosis versus your child's outward appearance?
So I am proposing a challenge to my fellow bloggers! For your next blog, take the absolute most offensive hurtful things people have said to you, and turn them into a positive. From 1 special needs parent to another, I too feel as though people do not understand what I am going through. NEWS FLASH, most never will. We always want people to "see from our side", "walk in our shoes", "live a day of our lives", so lets show those "well meaners" the same respect!

Schizencephaly Awareness 2015

Jaylyns Journey proudly presents its 2015 Schizencephaly Awareness Video! Please share and wear green and purple on May 19th to raise awareness! #TeamJaylyn #flipagram ♫ Music: made with @flipagram . http://flipagram.com/f/VHNqBLdJI5

When "well meaning" words hurt

There is a very good reason I raise awareness and encourage my friends and family to learn about Jaylyn's diagnoses. Those reasons include avoiding conflict, better understanding of Jaylyn, and selfishly, to spare me some anticipated pain when those "well meaning" comments come out of someones mouth. Its almost unavoidable and mostly expected from strangers who may not know or understand. But for those that do know, or at least have some idea of what we go through on a daily basis, its downright painful. Between updating family on social media, running an awareness page and sharing Jaylyn's progress, I would hope to be spared at least some pain. Yet it still seems as though some have no idea whatsoever. Or perhaps, they dont want to know. I sometimes wish I didnt. The grasp on reality, my medical background, and thirst for answers is a blessing and a curse. I do share quite a bit, however, every single detail of our lives is not broadcast on social media, and even if it were, I still think it would be hard for anyone to have a really good understanding of what we go through and grasp why I grieve. There are so many things that people complain about their children doing, that I yearn to see Jaylyn do. I wont say that Im envious, or that they even take those things for granted, because I raised 2 typical children and had those same complaints at one time as well. But I would love to hear Jaylyn say, well, anything really! I would love to walk in from work and have her run up to me, wrap both her arms around me, and her tell me that she loves and misses me. But due to her diagnoses, that is never going to happen and I have to love whats missing. I am pleased with her progress, although we have had some recent set backs. Her recent grasp on sign language is encouraging and we will be working on a picture exchange system as well. I dont just write these blogs, make awareness videos and run an awareness page for me. I do this for those that want to know Jaylyn. Want to understand her diagnoses, and perhaps maybe even understand where Im coming from and why I get upset with "well meaning" comments about her running around or talking my ear off. She is classified as NON VERBAL and NON AMBULATORY. Which means she cannot talk or walk. Will she? Not in the way you or I do. Not like a typical child. Her PT has even made a recommendation for an adaptive "stroller" aka a wheelchair. So when I am outside working with her and I look at you like I want to punch you in the face for making jokes about Jaylyn running around, perhaps you understand why.

Hopefully Optimistic

I promised myself I would stay off of search sites until after my daughter's appointment next week. Im dreading the possible diagnoses. Im dreading the fact that she will most likely require surgery on her eyes. Im dreading next week in general. We have an appointment every single day next week. I still have to work, cook, clean, etc. you get the idea. The added stresses of the few friends that still bother to reach out, asking why they havent heard from me, etc is just adding to the pile of pressure I am constantly dealing with. The expectations of being the initiator for contact all the time because people dont want to "bother me" is starting to feel more like no one wants to bother.

Due to the fact that having a special needs child is a rather lonely road and I have mostly only myself to count on, I thought perhaps venturing into one of the online support groups I belong to would be of comfort. As I was scrolling through, I saw a post from a mom with a baby a little bit younger than Jaylyn talking about her excitement over how much she "babbles" and was wondering if that were any indication that her child may speak. I got so excited because although Jaylyn is considered "non verbal", she babbles all day long and is so expressive with it, its almost as if she is speaking a language of her very own. I noticed that there were several comments, mostly from mothers with older children with polymicrogyria.  Since most doctors seem so clueless as to what polymicrogyria is and what I am to expect, and the internet is sparse with updated research, these are my go to people for information. And yes even hope. What I read however, really put a damper on my day and my hope that Jaylyn would some day speak. She will be taught a form of communication, but her handing me a picture of something to make her needs known is nothing compared to her saying "Mama, I love you". Oh but I know she does, no doubt about it. She is so full of the most unconditional love and light, I wish it were contagious!

Shhhhhhh!

shhhhhh!!!!!: http://youtu.be/CjdFNammmTk

Just bad luck!

When you're as analytical as I am, I need to know the "why" to everything. So after the months of guessing games, tests, and finally a multitude of diagnoses, of course I needed to know WHY?! What caused this? Could it have been prevented? Was it something I was exposed to? Was it a medication to ease the discomforts of morning sickness? Is there a way to find out? And so I began asking questions of the doctors that are now caring for my daughter who has hit the rare disease jackpot so to speak. Due to the diagnoses of 2 rare brain abnormalities, naturally I asked the neurologist. He would know best right? His answer? You guessed it! "Just bad luck!". This answer has yet to sit well with me. There has to be a reason other than just bad luck! And so after switching pediatricians, and going over every finite detail of Jaylyn's birth history, diagnosis of neonatal alloimmune thrombocytopenia and the barrage of things it could possibly be responsible for, she wants us to follow up with hematology to see if there may be another reason Jaylyn had suffered a stroke and brain bleed in utero. So we could actually have some answers!  Of course I dont want Jaylyn to suffer anymore poking and prodding than necessary but a why could lead to more appropriate treatment and protect my other children when they decide to have their own children. And yes she did agree that my unfortunate exposures to contaminated water and vinyl chloride could very well be the culprit. And then there is the medication I was prescribed for morning sickness. Now there is a huge class action lawsuit for the birth deffects caused by that. So I know deep in my heart that there is a "why" just as I knew deep in my heart something was just not right throughout my entire pregnancy. Just like I knew deep in my heart I had to keep pushing for months for appropriate testing that led to proper diagnoses. So if anyone can learn just 1 thing from our journey is to never give up on finding answers and not all experts are experts on YOUR child.

Its been a while, but Im switching it up for a minute

I originally started this blog for my daughter Jaylyn and her vast complex diagnoses.  However, due to being contacted in a negative manner by someone with a Google doctorate on "asburgers", I felt the need to write on my 20 years of experience with ASPERGERS as a mother and as a nurse, which has since been renamed ASD or autism spectrum disorder, also known as pervasive developmental disorder. First off, it does not mean that a person with autism is "retarded" (quoting the ignorantly informed). Quite the contrary, those with autism have higher than average IQ's. When my son was 4, his IQ was tested at 165. Quite the genius with a knack for remembering a lot of information. Of course knowing all the Pokemon and Yu-gi-oh cards ever made may seem silly to some, but that was his thing. Now its movie quotes, music and technology. Of course being on the spectrum and being mainstreamed in a school system that was ill equipped, academics were a challenge, as were some social situations. I wouldnt trade him for anything in this world!
Studies and research on Aspergers shows that despite recent media hype, those with Aspergers do not have violent tendencies, they tend to be victims rather than victimizers. Criminals of violent crimes who happened to have Aspergers also had other psychiatric disorders which do present with "tempers" and violent behavior.
Unlike those diagnosed with ASD that may be lower on the spectrum and tend to be selectively social,  my son is social and very well liked. Far from perfect, but a perfectly capable young man. He works hard at his job and at home as the man of the house. From menial chores to being the most amazing big brother to his sister Samaura who is a career high honor roll student, and his baby sister Jaylyn who happens to be special needs (also not "retarded"). When he was younger, I struggled to get Devon to do the simplest things on his own without prompting or reminders. Now he does this for himself and his baby sister as part of his routine. Jaylyn has been a major factor in Devon turning into an amazing young man. From the time I was pregnant, Devon accompanied me on many of my ultrasound appointments,  painted my unreachable toes, and took over the chores I could no longer do. Since Jaylyn came home from the hospital, hes fed, dressed, bathed, changed, and tended to her medical needs like a pro. I couldnt ask for a better son and he will make some young lady proud to call him her husband. I consider myself fortunate that Devon has Aspergers. His attention to detail when it comes to his sisters is on point. If only it was that good with remembering to take the trash out lol. So stay classy people. If you have someone in your life on the autism spectrum, embrace their gifts! They are the most amazing people I have ever encountered!

Hilarious!

Chill out!: http://youtu.be/m5WWq8bTx5E

My super awesome awareness video

My super awesome awareness video!: http://youtu.be/HvhRAh6Kb1c

Faith, Hope, Love, AND REALITY

Along our journey, I have been searching for ways to cope, grieve, and find some happiness. I am pulled in so many directions on a daily basis, that I rarely have the time.  I enjoy those little moments when Jaylyn does even the smallest unexpected thing. Its a celebration.  Those rare moments when she purposefully uses her right hand are monumental to me. She has surprised me and those "experts" with how well she is doing compared to so many others with the same diagnoses.

With that in mind, it certainly does not take away from the reality of it. The facts. So when I am excitingly updating a family member, and those unfortunate but well meaning words cross their lips, "maybe the Drs are wrong and she will be normal", my head falls heavy into my hands. I feel like you are calling me a liar and Jaylyn a faker. That perhaps I am exaggerating the severity of this. I assure you, I AM NOT. Its great to be hopeful and have faith that "everything will be fine". But the reality and facts cannot go ignored.

And just what prompted me to write this? The other day, after giving Jaylyn her first dose of seizure meds for the day, she gingerly reached for the syringe and explored it with both hands. Hooray! And as quick as I was to celebrate this event, the words that followed out of my typical daughter's mouth broke my heart. It certainly was not intentional, but it made me realize just how hurtful those false hopes AND reality really are. How do you explain such a thing to an 11 year old so that she could possibly understand? And so I remained silent, faked a smile and cried in private like I often do. It took over 24 hours to gain the composure to address just what she had said.

As Jaylyn explored the syringe, Sam had said "maybe she will grow up to be a doctor!". Those words were so full of hope and anticipation,  that I was not prepared or willing to crush that dream...at that time. What was running through my mind was "if she grows up", "if she becomes ambulatory", "if she becomes verbal", "if she lives".  I try my best not to be a Debbie Downer, but lets face it, when your child is diagnosed with not 1 but 2 brain abnormalities that shorten their lifespan, it does get me down.

The truth is, we do not know just what Jaylyn's future will hold, what she will and wont be capable of. There are many a "what ifs", but I am not prepared for the devastation my other children's false hopes may bring in the future either. So whats a mom to do? After thinking, crying, and talking with Jay, it was yet again time to sit my typical daughter down for a talk and a gentle reality check.

As kindly as I could, I reminded her of the conversation and of her words. She saw that I had tears in my eyes and began crying herself. She knew! I had explained again about Jaylyn's condition and her response was still so full of hope. "I was just hoping Jaylyn would grow up to do something big."  I explained that her waking up to see another day is BIG. Every time she smiles is BIG. Her determination and drive and resulting progress is HUGE! And that is what matters. To focus on the day we have with her. To enjoy and celebrate the accomplishments she is making now, because tomorrow is a promise that is so easily broken.