A mile in my shoes..An open letter to those that serve the disabled community

Dear________:
My name is Jaylyn and I am 3 years old. I would like to invite you to walk a mile in my shoes, because someday someone you love, or maybe even you could be wearing them!  I like pizza, the Philadelphia Eagles, going to Chuck E Cheese, and playing with my friends in school. I laugh at silly things like fart noises and can throw a tantrum like nobodies business when I don't get my way. I'm very much what a 3 year old should be and more! I also happened to have a brain bleed when I was in my mommy's tummy that caused my brain to not develop properly, so I have cerebral palsy and epilepsy too. But that doesn't stop me! I'm a very determined little girl. Determined to prove you wrong! I have been a fighter since the fetus and although I cannot speak, I get my point across.

My mommy is my voice, my advocate, my protector. Its her job to take care of me, keep me safe, take me to all my appointments, order all of my medical supplies, and on and on and on! She does A LOT! Its a full time job to take care of a child like me and I pay her with hugs and kisses. She wouldn't have it any other way. Cognitively, I am a "normal" 3 year old. I understand everything that is said to me. I'm aware of my surroundings and what is going on in my life. I'm non verbal. Not dumb! I am a person. Not an object or task that has been assigned to you. I deserve the same dignity and respect as your "walkie-talkies", Wrestling and Football teams. I deserve the same treatment, education, and opportunities as any other child living in the same school district. I may be different, but I assure you that I am not less!

We interrupt this blog to bring you this special report: News flash! This just in! The disabled population is growing and although I cannot speak, I refuse to be silent. The system is not flawed. It is broken! Every morning while waiting for my bus, there are 3 other children on my street alone that are also waiting for theirs, to take them to their out of district "special schools". And there are 3 more that I see just around the corner. Even one of my classmates lives in the same town but somehow we have to take separate busses and my round trip route for a 20 minute ride is 2 1/2 hours because I am in a wheelchair.  Guess what?!?! Not all disabilities are congenital. Some are acquired later in life. That means any one of you could be sitting in a wheelchair next to me at any time! Does that mean your basic rights should be ripped away because you are disabled? Does that mean you should settle for mediocre effort from those employed to help you? I sincerely hope you are never in a position to understand just what me and my family go through on a daily basis. Do you remember when you first decided what you wanted to be when you grew up? That exciting feeling of wanting to make a difference?  What happened? Now everyone just wants a pat on the back and recognition for a half assed job instead of making that difference. Why not fight with me instead of against me?!

I can't even go to a high school football game to support my sister without being denied the basic human right of access to a bathroom. For a small town that has such a large population of disabled and special needs children, you are not very handicap friendly. We matter too. We want to be heard, not placated. I want to be treated like everyone else, not like an afterthought. I will even go so far as to extend an open invite to certain members of the school district and community to come spend some time with me for a crash course in Empathy and Compassion 101. Come see my morning routine for yourself and see if you still think you did an "excellent job". I AM NOT A "DIFFICULT SITUATION" I am Jaylyn True Martinez. 

Sincerely,
Team Jaylyn

A grim reality-tale

Once upon a time there lived a princess. This was no ordinary princess as she didn't live the luxurious way most princesses lived. There were no castles, fancy balls, or even a handsome Prince to rescue her from an evil queen. Oh it was quite the contrary, she was the rescuer and the healer. Seeking out the most broken of people and trying to fix them. Yet this gift did not come without a price. Each time she came to someone's rescue, a piece of herself was lost. Despite how much it had hurt her, she refused to give up.
One day, the princess happened upon a very broken Prince. He had no family to speak of, and nowhere to live. In the midst of her dangerous rescue of this Prince, she welcomed him into her life and her home. She made sure the Prince had all he needed. A home, clothes, food, and a warm bed to sleep in. She did all She could with what little she had to make him happy. This was such a challenge because the Prince was in so much pain. He had 3 little princesses of his own that he had said were being kept from him by an evil queen. The heroine of our story rose to the challenge of doing all She could to make her newfound Prince happy but nothing seemed to work. Especially since she didn't think the Prince made a valiant effort to rescue his own princesses, or himself. Each attempt was a failure that broke her heart. To cut down on the financial hardship the addition to her kingdom had caused, the princess had asked that the Prince also find a job. While the princess was hard at work, the Prince was courting other princesses instead of honoring the request.
What the princess did not know was that the Prince had ill intentions all along. Her love for him blinded her from the red flags that were there the whole time. The Prince was so convincing that he would one day love her as much as she loved him, but he kept her at arms length. Feeling like a failure, his love was like a carrot being dangled in front of a mule to keep it moving. And so she did his bidding, in hopes that one day he would love her as much as she loved him. In many ways she was more of a servant. Yet she didn't mind because she loved him so much.
There was a grand celebration for the prince's birthday, the princess looked her best and took the Prince out for a night to remember! Celebrating and enjoying libations. There were pictures of the event to mark the occasion that had meant so very much to her. Until the princess discovered that she was a laughing stock and a joke amongst the Prince and one of the many other princesses the Prince secretly had in his life. The Prince often had other princesses challenge the heroine of our story as if she was nothing more than a peasant with misguided affections. The princess tried so very hard to forgive the Prince for breaking her heart, yet to this day the pain this had brought can still be felt.
It wasn't until the Prince had lost his temper and struck One of the princesses loyal subjects, did he finally profess his love for her. The princess, more like a fool was so longing to hear those words that she didn't see that the Prince was only manipulating her broken heart and our story should have ended there.
The princess waged on in her quest to make her Prince happy, despite the misery and pain she had often felt. The princess did all She could to help the Prince reunite with his 3 little princesses, And then the princess happened upon a wounded baby unicorn. The wounded baby unicorn was so special and seemed to unite the Prince and princess together..or so the princess thought. In all of the hoopla around the baby unicorn, a miracle seemed to happen. The evil queen released the prince's 3 little girls from her clutches.

What the princess of our tale did not know until much later was that the evil queen was not so evil after all. The Prince had abandoned his princesses so he could be free to venture out on a quest and had made no effort to retrieve them until the princess had offered to help. The Prince had no mighty steed for which to travel and relied on the princess to provide him with means to travel to any destination he so desired. The not so evil queen was relocating to a new castle and had asked the princess to take care of the 2 younger princesses. Despite limited means, because she had loved the Prince so much, she did. The princess thought now that the Prince had been reunited with his estranged little princesses that he could once again be whole and love her the way he had promised he would. The strain of taking care of the wounded baby unicorn, her own loyal subjects, the Prince and his 2 little princesses had become difficult to bare on her own. She pleaded with the Prince for help because his 2 little princesses were often very un-princess like. Despite the princesses pleas, she became a slave in her own home.  The Prince was often so engrossed in the latest technology he was oblivious to anything going on around him. It had finally escalated to an uprising of the loyal subjects who had to wait on the un-princesses who had subjected them to cruel treatment in their own home. The uprising resulted in the thwarting of the Prince and his 2 little princesses. The princess was devastatingly heart broken.
The Prince began making horrible accusations against the princess and turned the family he said he didn't have against her too. Still despite all the pain he had caused, she reluctantly fell for his charms once again as he begged on his hands and knees to be in her life so he could help take care of the wounded baby unicorn and promised to never hurt her or her loyal subjects again. What The princess did not know was that the kingdom The Prince was residing in, wanted him to leave. The princess held council with her loyal subjects and although hesitant, thought it would be best for the wounded baby unicorn if he returned to the kingdom.
The wounded baby unicorn became very sick and required a lot of care. The princess worked very hard to make sure that the baby unicorn got all of the care she needed, but she also needed a lot of help from the Prince. The Prince did a fairly good job in the beginning, until he started getting comfortable in the kingdom again. Again, the princess requested The Prince get a job to help take care of the baby unicorn. The kingdom had slowly deteriorated, the Prince again had become engrossed in the latest technology, often at the cost of the sick baby unicorns health and well being. The princess begged and begged the Prince to honor the promises he had made because she was working so hard to maintain her kingdom and keep the baby unicorn alive. The New technology seemed to have won over the princess Yet again. She felt defeated.
The Prince and the princess had to travel to a distant land to make the baby unicorn healthy again. The Prince was so distracted by the sights and sounds of this land that he seemed to forget the princess and baby unicorn were even there. The princess had to stay behind with the baby unicorn and the Prince had returned home. He had sent a message to the princess asking if he could have a celebration in her absence. After returning from the distant land with the baby unicorn, the princess begged the Prince for his time. There were new things to learn about the care of the baby unicorn. The princess had missed her Prince and she wanted to be held and comforted after such an ordeal. The Prince argued that his attention was needed with his new technology. Again the princess felt defeated, heartbroken and misled by the Prince. She felt as if he never did really love her and merely used her and the baby unicorn to survive by any means necessary. The princess had spoken up about the pain The Prince had caused, and one of her loyal subjects had questioned why she was crying and came to her defense. The Prince became very angry and violent. The princess attempted to protect her loyal subject and had gotten the brunt of the violence, the effects of which are still felt today. The guards had seized the Prince and exiled him from the kingdom.
The royal court had ordered that the princess and everyone in her kingdom be protected from the Prince. Efforts were made for the Prince to see the baby unicorn but he refused. Instead the Prince chose to defame and harrass The princess, lurk around the kingdom he was exiled from and go against the royal courts protection order.  And with the flick of an evil tongue and some harsh words amongst his new found minions, the princess was now the new "evil queen".
Although no dragons were slain in this tale, since there are so many ever changing stories floating around these days, I figured I would write one that is believable. The End.

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!