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

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...

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.

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.

Dear person Ive explained this to for the umpteenth time today!

When your child is sick enough to warrant a call to the doctor, you usually have to describe symptoms, etc to the receptionist prior to the appointment. Once you arrive, the nurse that takes you to a room asks, and then once the doctor comes in, you have to explain yet again symptoms, timeline of onset, what meds were given, and what interventions were taken.

Now lets say you have a special needs child with a complex history? This may be the one time you do not want your child treated like everybody else! If not for their well being, for your sanity as well!

Jaylyn received her 15 month vaccines 9 days ago. She has been running a fever since. Symptoms progressed to the point of an office visit, antibiotics,  a trip to the emergency room, and a follow up with the pediatrician pending in 1 to 2 days. Its been determined that the vaccines have caused an adverse reaction. But the process to come to that conclusion has been stressful and frustrating.

#1 when calling the pediatrician with concerns about symptoms lasting this long, I do not want to be told "let me see if triage can take your call". All of this pussy footing around for months on end and this wait and see approach has done nothing but inhibit my daughter's progress. This was a 3 hour back and forth event that resulted in me demanding her pediatrician be notified. The Dr did determine that her prolonged symptoms warranted a trip to the emergency room.  I tried to spare myself some aggrivation by taking her to a children's hospital where a lot of the patients are also special needs.
#2 once we arrived, we had to explain a weeks worth of events and symptoms to the person at the desk. Once we were called back by the triage nurse, we had to explain again. Juggling a squirmy crying baby, a diaper bag that was spilling out while this chick was talking over my daughter's screams and simultaneously taking her vital signs inducing even more ear piercing screams as the nurse continued to ask me question after question. Did I mention I have hearing loss and tinnitus?
#3 Once we were taken into an exam room, yet another nurse comes in to reassess Jaylyn, as if the vital signs just taken seconds ago were invalid. Jaylyn was still crying, screaming, and squirming.  And of course, que the explanation of why we were there, more of the same questions, and a very unaccomodating gurney. Of course the ASSumption of a female child and a fever for a week sparks concern of her having a urinary tract infection.  I know how to wipe my childs ass thank you very much, and the adhesive bag wound up leaking all over me. Awesome! At least it was enough to determine that yes they will bill my insurance company for collecting the urine, as it sat in a cup on the counter and not touched or sent to a lab. It was also dark, indicating that Jaylyn was a bit dehydrated.

#4 Because the children's hospital we frequent is a teaching hospital,  of course we dont see a doctor right away, they send in a student! Yay! *sarcasm* So again, I have to explain why we were there, got asked a lot of stupid questions that I had given the answer to already while explaining why we were there. The redheaded homocidal rage was mounting at this point as I was making my own assessment of this student. The lack of confidence and uncertainty while she attempted to examine my child was overwhelming.  It wound up being half assed and incomplete.
 
#5 3 hours later a "Fellow" came in to examine Jaylyn.  His approach, ability to interact with my child without making her cry, and skills were notable. His ASSumption that my daughter's vaccines received at 15 months should have been given at 12 and that they were late made me go redhead on his ass with facts, knowlege and vaccination records indicating that Jaylyn got her appropriate vaccines at 12 AND 15 months. Better brush up on the birth to 18 vaccine schedule there friend ;-). Of course he also began asking the same questions I was asked umpteen times today, along with the student's account of her misinformed and twisted version of what she thought was going on. Although I had explained everything no less than 3 times while facepalming of course. So I had to re explain everything all over again. And it was a good thing I did. Jaylyn was then spared unnecessary blood work.

#6 FINALLY the attending physician sees Jaylyn and yes, you guessed it, the whole explaining and questions routine! And I may have forgotten to mention that because Jaylyn's complex medical history and diagnoses are so rare, we get asked a lot of questions about that too! But alas we were finally discharged!

#7 The "exit" strategy.  Leaving this hospital is a process. After getting your little parking ticket stub validated, typically you insert it into a machine in the parking garage,  pay, and are issued a receipt that gets scanned at the exit resulting in the electronic barricade lifting and youre on your way! So the machine is out of order and they usually have cashiers in booths at the exit, which would be easier than juggling baby, diaper bag, wallet and a transaction with said machine. I get 3/4 of the way to my car and notice a sign stating that there are no longer tellers in booths at the exits. It instructed me to go to a booth by the elevators, all the way back near where I just was. Awesome! Ok, juggling squirmy baby, diaper bag, wallet, and transaction complete. Got my receipt to scan at the machine. Finally got to the car, got Jaylyn settled and we were on our way home! Yay! If it weren't for the clueless woman PARKED right at the exit causing two lanes of backed up cars trying to leave. I see her just sitting in her car. After a few minutes I honked. As did the 20 others waiting to leave. The cashier came out of her booth, and I explained that this woman had been just sitting idle here. Ignoring all the beeps and traffic, and now at this point, irate shouting from the 5th car back.  Ok so booth lady approaches clueless ladys car, knocks on her window and showed her the commotion she was causing and told her she needed to move. FINALLY!  She made it all the way to the machine where you scan your receipt,  scanned her receipt, barracade went up, and still she sat. SERIOUSLY?! I honked my horn and motioned her to go. She opens her car door, peeks out, and says she doesnt know what to do next....SERIOUSLY?! DRIVE! YOU DRIVE! JUST GO! being behind this woman was just the icing on the cake of my day! All the way up the winding exit, I was hoping that she wasnt turning right. She turned right. I saw my opportunity to whip around her and I took it.

#8 I arrive home to explain all that had happened to my family and then bitch blog about it to vent and feel better! But perhaps those that work in the medical field (myself included ) can learn from this. Not all children are tolerant of excessive and unnecessary poking and prodding and not all parents of special needs children have patience of saints when it comes to the barrage of repeated questions. 

What I am Thankful for...

All across social media, people have been taking a "challenge" of sorts. Posting for so many days what they are thankful for, for each given day. It is a refreshing change from a lot of the negativity and political disagreements that monopolize my news feed.

Its far from a "challenge" and no secret what I am thankful for, not just for Thanksgiving but every single day. Every day Jaylyn is with us. Every moment, good or bad. Every smile. Every sloppy, drool filled open mouthed attempt at giving me a kiss. Every time she snuggles up close and tight.

As I scroll through the posts in my online support groups for Jaylyn's various diagnoses, I am thankful she is doing as well as she is. That she is even here at all.  That she survived N.A.I.T. That despite her other diagnoses,  she continues to persevere.

I remember a few Thanksgiving gatherings from my past where everyone at the table would take turns saying what they were thankful for. If that were to occur today, I think I would probably break down and cry.  Yes, I am thankful for the usual list of things everyone else is thankful for. A job, a house, family,  friends, etc. Those are the easy answers. The typical replies. The things many of us take for granted.  I am still thankful for those things. However,  Jaylyn will forever be in the forefront of that list. I would like to thank all of those who have joined and supported Jaylyn's Journey.  I wish you and your families a happy and healthy holiday season!

Dont ostrasize me!

Whether it's a "well meaning" attempt to "protect" my disabled child from your typical child, or an unfounded act of fear, the message you give to your children is one of continued ignorance. 

When your curious child approaches my daughter, I see wonderment, curiosity, and a hand reaching out to make a friend. When you run up and snatch your child away from such a beautiful encounter, what does your child see? What does my child see?

I want nothing more than for my daughter to be able to run around and play. For now she has to settle for army crawling to propel herself in her desired direction, or walking with maximum assistance. Her determination tells me she wants what I want too. My faith in her tells me she will reach that goal.

She doesn't want to be "left alone", and frankly neither do I! Chances to socialize with other children are far and few between. Sure she has older siblings, but it would be nice if Jaylyn had an accepting friend.  It would also be nice if we didn't have experiences such as this. My daughter is not some contageous delicate flower that will break while simultaneously spreading disease. Cerebral palsy and epilepsy are not contageous,  neither are the causes.

Jaylyn is a happy, determined, rough and tumble playing baby! Rather than saying she is disabled, I prefer the term differently-abled. She finds a way to manipulate her toys, play with her apps on my phone, even semi assist me when dressing her! Despite her challenges, she manages to crawl into the kitchen and tip over the dog's water bowl. Opens cabinets, tears up papers, pulls things off the coffee table, and yes even throws an occasional tantrum when she does not get her way. If I described a day in the life of Jaylyn and left out the difficulties she has, I would be describing typical toddler behavior. Jaylyn has a lot of physical challenges that make a lot of tasks babies her age should be doing, difficult or impossible.  I don't think the things she's unable to do are because she is delayed, but due to her inability to do them physically.  The fact that she does not yet speak definitely makes it even more challenging. 
Jaylyn knows a little sign language,  but again, physical challenges inhibit her from signing more complex words that require the use of both hands. I have been working with her on pushing buttons on her apps to prime her for a communication device. I even have one downloaded that uses pictures and speaks the word.  I know it will take a special person to be her friend and find alternative ways to play and communicate.  Until then, she has her family!

"We don't address the cause, we treat the symptoms"

Probably the BIGGEST mistake in healthcare in the United States today!  In the almost 15 months Jaylyn has been on this earth, I have heard this phrase more times than I can count. I cringe. I start to believe my brothers conspiracy theories. It makes entirely too much sense to address the cause and do something about it. However,  the cause is often ignored and only the symptoms are treated. No matter what your age, stage, or diagnosis. If you've gone to the doctor for a problem, the answer is 9 times out of 10 a prescription to treat the symptoms. 
My BIGGEST problem with this?!?! Jaylyn has 2 extremely rare brain abnormalities.  Do I expect early intervention to become immediate experts?!?! No of course not! But I do expect them to understand that although "The State" says they "normally" wont provide speech therapy until after age 2, take into consideration that alone, either/or of these diagnoses affects speech. Most of these kids are non verbal. ADDRESS THE CAUSE! Why wait 2 years and allow those speech and swallow muscles to become weaker?!?!
Jaylyn will be 15 months old soon. She doesn't speak. She vocalizes some sounds. Mostly vowel sounds. But no purposeful speech. I do get excited when she makes those "ma ma ma" sounds. I am hopeful that she will be one of the lucky few that can speak. She is determined!  As am I to make sure she gets everything she needs to reach her full potential. 
But addressing only symptoms? So put her on meds to stop the constant drooling instead of addressing the fact that her facial muscles are weak on the right side? Does that make sense?!?! Only in 'Merica.

We embark on yet another adventure!

Kids do not come with instructions.  And special needs kids?!?! They dont come with instructions, a how to manual, or even a diagram to give you a hint of whats in store! Of course I am using my sarcastic sense of humor here, because even parenting typical children has its challenges! However, a map to help navigate the endless appointments, specialists,  services and agencies sure would be nice! Its more than overwhelming,  and sometimes I just want to curl up, take a nap and wake up to a different set of circumstances.  And by that, I mean that maybe these agencies and powers that be that seem to know more about my daughter's needs than I do would make things just a little easier. Nothing has been easy since Jaylyn was born. Not even getting the necessary testing for diagnosing and treating her. I certainly do not expect people to go out of their way, make exceptions or bend over backwards for the simple reason that Jaylyn is special needs.  Just perhaps be more aware of the already difficult time parents are having. Understand that we are grieving. We do not want a pity party, but we certainly do not appreciate the seemingly purposeful hard time we are given getting care, services and benefits for our children. 
Tomorrow's adventure is to the CP clinic at Shriners. We were exclusively a CHOP family until we were faced with more obstacles getting services and benefits than ANY parent should. We were faced with the reality that Jaylyn will need assistive devices and equipment that we couldnt possibly afford.  Even my weekly insurance premium is too much and I will be faced with a difficult decision when it comes time for open enrollment.  Thank goodness for the good people at Shriners who provide Jaylyn's orthopedic care and equipment free of charge! I hope to one day be in a position to pay it forward because I firmly believe in it! I know when I had the opportunity to give a sick little girl a doll for Christmas that was sold out, the smile and joy it brought her filled my heart. The little pearl beaded angel she had given me in return still sits in my china cabinet as a reminder of that day and the reason behind it. I have to keep thinking that all the difficulties and challenges we are facing now, will lead to something good in the very near future. Jaylyn is my little reminder every time she smiles at me.

Jaylyn's 2nd Halloween

This time last year, we had a sense of calm. We thought the worst was over! When Jaylyn was born with low platelets and required transfusions and a week long NICU stay, we were told that once her platelets normalized that she was out of the woods and we had nothing more to worry about. And so for this brief moment in time, we thought no different! We were relieved! I felt as though I could breathe again after holding my breath. It wasnt until Jaylyn was around 4 months old that we began to suspect that something more was wrong. So in this moment in time I can revel in my happiness. Enjoy the calm. And honestly the only thing thats really changed how I feel about Jaylyn is that I love her even more! We were planning on Jaylyn being able to walk at this time and fantasized about her running door to door to trick or treat.  So this years Halloween is bitter sweet. Jaylyn still mostly army crawls to get around. She has been getting up on her knees more which is very exciting and we wonder if next Halloween I will be blogging about having to chase after her. I certainly hope so! And I look forward to looking back on this one next year! Have a happy and safe Halloween from all of us here on Jaylyn's Journey!

Busy days are a blessing in disguise!

As much as I do not slow down, relax, or even sleep, I consider it a blessing in disguise.  As much as I long for a day at a spa, or even going to get my hair done, I know exactly what will happen. I will think. I will dwell. And I will cry! As much as I would love a day just for me, I am thankful I never get that. As much as I would love for a friend to reach out and invite me somewhere, for a coffee or a nice cold beer, I would not enjoy it.
Being busy and overwhelmed, on high alert and full of constant worry and anxiety is by no means an enjoyable feeling. I hate it! But I hate sorrow more.
Oh but "everything happens for a reason". "God wouldnt give you anything more than you could handle". "God only gives special children to special people". "But Jaylyn looks normal, I cant even tell theres anything wrong with her". "She will turn out just fine, doctors are always wrong". Each of those phrases has been said to me on more than 1 occasion and each time I hear them, its like a knife in my heart. Until you live this, you will not understand and I wouldn't wish this on anyone. Its one thing to lose a loved one when they die. You grieve and mourn and the finality of it eventually settles in and with each day that goes by it becomes easier to cope and accept. When you have a child with special needs, you never want to fully accept the diagnosis, the prognosis, or the expectations and limitations your child will face. I admit I am still grieving and even though it took 8 months for the full shabang of diagnoses, I knew there was something seriously wrong. The "wait and see" approach did not sit well with me and I pushed for answers. Not the answers I wanted or expected, so it was as if I was not prepared at all to be hit with all of this at once.
I am very analytical by nature and am always looking for the "why". Why did this happen, what caused this, why me, why her, etc etc....not in a self pity "woah is me", attention seeking way. I just really need to know as if it would perhaps ease some of the pain. Another phrase I just LOVE to hear.... (analytical and sarcastic by the way) is that "it could be worse!" The only 2 people I do not get upset with for saying this to me is myself and Jay. Of course it could be worse! She could have suffered a great deal more than she already has, or not have made it at all! I think about that all the damn time, and I certainly do not need an outsider pointing that out when they do not comprehend in the slightest all we have been through and will continue to go through. We have a child that is essentially a ticking time bomb that has difficulty communicating her needs. Sometimes living in the now, seizing the moment and enjoying her while she is here is not the easiest thing to do when we are all exhausted from staying up with her, trying to guess what it is that she wants or needs. Whether or not she is in pain. Wondering if its her teeth cutting or something far more serious.
A few weeks ago, with 'the great ear infection fiasco of 2014' as I like to call it, I dont think anyone slept. The fevers, the crying, the temperature taking, the allergic reaction to antibiotics,  3 pediatrician visits and a trip to the ER. But I was too busy and exhausted to even think...thank goodness! The illness exacerbated Jaylyn's epilepsy,  lowered her seizure threshold,  she had a significant event and required a dosage increase of her seizure meds. Out of all of that, what upset me the most was an insensitive remark that the triage nurse had made when I had called about Jaylyn's allergic reaction to the 1st antibiotic she was put on. "Is JAQUELINE still pulling at her ears". 1st of all, the dopey bitch got my daughter's name wrong. And 2nd of all, Jaylyn has never in her 14 months on this earth been able, or made an attempt to pull at her ears. So after being on the defensive about that,  a comment that the emergency room resident had made, definitely put things in perspective.  She was admittedly shocked as she came in the room to see Jaylyn in a sitting position without support.  The resident had said she was expecting to see a child with significantly more disabilities than Jaylyn presents with. Now THAT is a proud moment! Knowing Jaylyn has exceeded someones expectations! Knowing she doesnt have to be in the same box as other babies her age. No,she doesnt have to be on point with typical babies her age. The only problem with her not pulling at her ears due to pain is the fact that no we didnt know her ears were bothering her. Maybe they werent! Maybe she is like her mama or many other typical redheads and has a high tolerance for pain! Or maybe we will have to find other means to communicate.  I have been on Early Intervention since day 1 about starting speech therapy. "Typically the state wont pay until after the age of 2" is what I am told every time I ask. Of course they switch it up and rephrase the same scripted answer but that doesnt stop me from getting my daughter the help she needs! I went a different route this time, addressing my concerns regarding the nutritional and medical aspects of further delaying her getting speech therapy.  So....her PT is starting it and its incorporated into her treatment plan until Jaylyn is 2 and the state will pay for more intensive therapy. Hooray for multidisciplinary therapists! So maybe Jaylyn has blessed our lives for a reason. Maybe just maybe an invisible sky daddy gave her to us because we can handle it. But we are no more "special" than any other parent that loves their child.

Jaylyn's 1st "cold"

It has been 2 full weeks of torture. What started out as a case of the sniffles on a Tuesday has turned into a nightmare by Friday! As soon as Jaylyn's usually lower temp went over 99.5 we had a call in to her pediatrician.  They treated her as any other baby would have been treated. Checked her ears, nose, throat, and lungs. Dismissed her and her "just a virus". They treated me as any other panicky, over protective 1st time mom would be treated. Only Im not panicky, admittedly over protective, and this is not my 1st rodeo.
The initial strep test done in the office was negative. The specimen sent away was also negative. I was sure to call 1st thing that Monday because Jaylyn was still running a low grade fever. 100.2-100.3. I expressed this concern to the triage nurse when I called about the strep test results and she was sure to rattle off the new textbook perameters of what a fever consists of. Of course this screams to me that she enjoys insulting my intelligence as a peds nurse myself, and that she knows my child better than I do. It didnt seem to phase her that my daughter is "special needs". Has some scary brain abnormalities that most Drs know very little about, or that she has a seizure disorder thar could be exacerbated by fevers. Nope! My daughter is expected to fit in the same box as every other child and nervous mother. Especially with Enterovirus and Ebola scares popping up all over the country! I really wanted to tell her to go EFF herself. But I was nice and went on my soap box as to why I was so concerned and why I was not comfortable with my daughter having these symptoms for so long. I got the technical speech AGAIN about what a fever is. To make matters worse, the very next day this beeyotch calls me back!!! Asks how Jaylyn is doing and then proceeds to tell me that they would like to reevaluate her IF AND ONLY IF her temp is 100.4 or higher. Eff you lady! Thats what I wanted to say. I wound up giving her a half asleep response of "ok" and hung up on her for waking me up. On Friday, I woke Jaylyn up just as her physical therapist had arrived and noticed she had felt warmer than usual. Hot in fact. I took her temp and sure enough it was 100.3! So although technically not a temp by todays standards, the PT had to leave to decrease the chances of her spreading anything to her other clients. I called the pediatrician and fudged a bit on the temp. A tenth of a degree shouldnt make or break my daughter being seen. She was still sick a full 10 days later and a full week after 1st being seen in their office. Sure enough Jaylyn was then diagnosed with a bilateral ear infection and prescribed antibiotics.  We filled and started them immediately. 
I felt relieved that she was on an antibiotic and should start to feel better! Her fever began to increase. 103 and 104. My fear that these temps may cause a seizure increased too! Alternating tylenol and motrin. Taking her temp what seemed to be a hundred times a day. By her third dose of antibiotics,  I was sure she would show improvement. Usually 24 hours after the start of an antibiotic that is the case! Not with Jaylyn. She doesnt quite want to fit into that box either! Her temp was 104! I called her pediatrician and thankfully the on call triage nurse was smart enough to review Jaylyn's chart and history prior to speaking to me. She contacted the on call dr, who was actually Jaylyn's usual pediatrician.  She gave us different instructions on alternating tylenol and motrin (made sure I was giving the correct dose...bitch)and advised us that at any time we were not comfortable with the fever situation or if Jaylyn began seizing, to take her to the emergency room. Otherwise thwy wanted to see her back in the office Sunday morning. Jay and I found that to be a ridiculous waste of time and decided that if Jaylyn spiked another temp that we would take her to the Children's Hospital where she receives all of her specialized care.
Well the fever happened, and off we went. Expecting answers and a solution.  After all was said and done and a urinary tract infection was ruled out, Jaylyn was sent home with a fever, tylenol and motrin instructions,  and instructions to follow up with the pediatrician.
Im starting to think these people do not believe me...again! After all,  it took 8 months of convincing to get them to order a brain MRI and we were all shocked at those results! So now we are in limbo day 14 of a fever, and no answers. Also no blood work, or other studies done, or consults with her neuro to rule anything neurological out. Why do I have to tell these people how to do their job?!?! Why do thwy not consider my input? If that was done from the get go, Jaylyn could have been properly diagnosed and treated sooner...but what do I know?!?! Im JUST her mom, right?!?! Something someone told them to read in a book says this is the way things are and every patient is the same...at least that is how it feels. So come Monday when the office is opened, Im sure to get a call requesting to see Jaylyn in thwir office for "follow up". I have been plotting the conversation since we were discharged from the emergency room. I am not going to be nice. I know part of the grieving process is anger. And yes I am still grieving BUT I am also furious at the care or lack thereof. I do not blame othwrs for my daughter's diagnoses, but I hold the pediatricians office responsible for the delay and every time there is the slightest glitch, from confusing her with another patient whos 12 years older and the opposite sex, to documenting on her chart that she takes tegretol when she is prescribed trileptal. See, me being a nurse is a blessing and a curse and I will be ripping someone a new asshole! Wish me luck!

MAFOS and MOFOS!

YAY! Jaylyn finally got her MAFOS! And surprisingly she is adjusting very well to these strange contraptions.  They dont seem to even slow her down with her little crazy army crawl she uses to get around. I cant wait to see even more progress with physical therapy now that she has the support she needs to stand. Will she do it on her own? Will she ever walk? I most certainly hope so and have faith that maybe one day she will. Baby steps! We still have speech and occupational therapy in our near future too.
Yet with the good, comes the bad. Today I realized just how difficult and frustrating a simple thing like shoe shopping can be. Money is tight, so of course I did exactly what I promised my mother I wouldnt do, and used the gift card she sent me for my birthday on someone else. She even carefully chose a store she didnt think I would shop in for my kids to reinforce the fact that I was to get something for myself. I fully intended to get some much needed things for me, but my kids come first.
Not being savvy to this particular higher end department store, I was not aware just how unaccomodating they are even for shoppers with typical children. Their shopping carts are adorable,  no doubt. However,  they lack a seat and even have warnings that the basket is not for children to sit in. They had 1 wheelchair, adult sized. So I was faced with either carrying Jaylyn around or going back out to the car in the pouring rain to single handedly get her stroller while simultaneously holding her. I decided,  due to the fact that my time was limited, to suck it up and carry her to the shoe department I made sure to familiarize myself with online prior to going. I knew exactly which shoes I wanted to look at.  I was mumbling under my breath what a pain in the ass the store was for not having "normal" shopping carts. Of course the shoe department was at the farthest point from the entrance, but I was on a mission and knew exactly what I wanted so I wasnt going to be long. I couldn't have been more wrong!
The large variety of shoes, widths, styles, brands displayed on the store's website was an extremely poor representation of what was on their shelves.  Half a rack, divided in half again to separate boys shoes from girls shoes and of course the styles and brands I had anticipated were not there. So I had about a half an hour to start from scratch.  No cart, no stroller, no seats to sit and try on shoes. The frustration was already mounting.
The process must have looked ridiculous.  Holding Jaylyn and a giant diaper bag. Selecting a pair in various sizes to see which would fit with her MAFOS. Shimmy all this and baby to the floor. Discover the shoes dont fit, and manage to scoop it all back up and repeat. After about the third or fourth pair, Jaylyn let out a sneeze followed by what I could only describe as a clear yellow dam that finally broke free. So adding a runny nose of Niagra Falls proportions to this already crazy experience added to the rush to get out of there ASAP. An employee had walked by me a couple of times and I know he noticed my difficulty just as fast as I noticed he was wearing dress shoes with no socks. He seemed to purposely rush by as if what he was doing was of such urgency, that if he had stopped to assist me would have dire consequences.  I took the hint. I also became less considerate about where I reshelved the shoes that we had tried on.
My daily alarm alerting me that my other daughter will be dismissed from school in 30 minutes had just gone off.  I had tried on every shoe in the girls department. All were too narrow. Unless I wanted a shoe that was 4 sizes too big, even accomodating the MAFOS. I worked my way over to the boys shoes although I was secretly hoping I could get Jaylyn a cute pair of Disney Princess shoes. After trying on several pairs of boys shoes, managing an intolerant baby that was becoming feverish ( and with that, fear of seizures) I found a pair and a lightbulb had gone off as well. Slippers! Slippers with traction would be great! And slippers are sold everywhere! Shouldnt be a problem to pick up a cheap pair of cute character slippers in a large chain department store, right?!?! WRONG! I tracked down the no sock wearing employee, I was a bit winded, frustrated, and on the vurge of tears. Im sure my feelings of being overwhelmed were overwhelming but I managed a smile and asked him where I could find children's slippers. "For her?!?!" "Yes" I said. "To fit over these" as I pointed to the more than obvious plastic contraptions with bright purple velcro straps attatched to the baby I was holding's legs. Trying to lighten the obvious bad mood this dude was put in by my interupting his "busy work" of cutting up a box, I smiled, and gave Jaylyn some encouragement to say "Hi". She smiled her flirtatious smile and then laid her head on my shoulder as she often does when playing shy. She then peaked up to see if the guy was paying attention,  smiled and then hid her face again. But not before sneezing right into mine, all over my black shirt and down her upper lip. We were directed to the children's wear department,  which was on the way out, but of course all they had were $14 slipper socks that were akin to the kind you would get in the hospital,  only cuter with sock monkeys and duckies. "Eff that, we will go to Payless or Kmart" I mumbled to myself and rushed to the register to pay for the shoes.
Now with this giant diaper bag that also substitutes for my purse, digging for my wallet, keys, all while holding Jaylyn who doesnt exactly cooperate with being held, yet cant stand or walk, the cashier obviously doesnt have a clue. Even the simplest gesture of putting the receipt in the bag would have been a huge help. Instead, she extended it to me as if she were expecting me to sprout a 3rd arm just for her. I juggled and shifted things around to accomodate her. Put my keys in my mouth and muttered a few subliminal unpleasantries on my way out the door.
I then had 2 minutes to get to my daughter's school that was 10 minutes away. Hooray for technology and talk to text! After that was all straightened out, me, my snot covered shirt, and my girls had to rush right to an appointment so I had no time to de-snot, change or disinfect myself. Hooray for antibacterial hand wipes!
So the lesson of the day here folks is if you see someone struggling, even offering to put a receipt in a bag is a huge deal and can make a world of difference in someone's day! Dont be a MOFO!

Just another bump in the road, right?!

I am about to embark on probably the scariest part of our journey yet. Although temporarily,  and having my older children at my side, I wont have my partner in crime. My rock. My best friend. He is about to have major surgery.  A scary surgery.  And yes "that" thought has crossed both of our minds. He has been so vocal about it that I had to get medication to cope with the stress and anxiety of it all. I havent slept or eaten properly in days. Jaylyn still manages to brighten my day but I cant imagine, nor do I want to entertain the thoughts that Jays feelings have planted in my mind. So for at least 5 days Im flying solo. And thats if everything goes well. This is all going on in the midst of 3 field hockey games, 2 practices, 2 doctors appointments,  and Jaylyn's physical therapy. So many people ask me how I do it. I do not honestly know how 1 person can do all I do. But I do know that I couldn't do it without all the help my son gives. Where a typical 19/20 year old young man should be focusing on girls, video games, friends, school etc, Dev has set those things on the back burner to help care for Jaylyn.  I thank him every single day and tell him how much I appreciate all that he does. I know how much he has sacraficed. And now I believe he understands just how much I have had to go through when he was younger too. It doesn't ease the guilt I feel but the woman who is lucky enough to capture his heart will be the luckiest woman in the world. I am hoping once Jay recovers that he will be able to have a more active role and be able to participate fully as a parent and member of the household. Since his illness had started just prior to Jaylyn's birth, he neglected to care for himself amongst all the chaos and heartache of Jaylyn's diagnoses.  This is why it is so very important for parents of special needs children to take care of themselves too! The problem was ignored for so long that it has become serious and possibly life threatening.  As if all of the "what ifs" we face daily about Jaylyn are not enough....Now? There are so many "what ifs" about her daddy too. Happy Birthday to me!

Dear "typical" parent

Dear typical parent.
I hear your complaints loud and clear. Chasing after your toddler is exhausting. Wiping up those messes from spilled cups and tipped over lunches does get redundant! Wishing for those days when all your baby did was "lie there" not making a peep. Believe me I do "GET IT".  I was once that typical mother too. Twice in fact. All the babble, chatter and sound effects my son would make drove me INSANE! Not being able to turn my back on my typical daughter because she would get her self into something that would result in injury or a big mess. Oh how I long for those days now. Oh how I wish my "quiet", "lazy" baby would be loud, babble, talk, scream and screech until my ears bleed. Oh how I wish she would have full use of her arms and legs so I can chase her away from the stairs, have to worry about her dumping and flushing goodness knows what down the toilet. How I wish she was able to dump her milk all over the table and dump her food over her head. I would love and long for the day she asks "whats that" and "why" a bajillion times a day! Even repeating words she shouldnt! So when you have to replace your carpet, have a plumber come out at odd hours, or youre so mad that youre wiping food off the walls for the 5th time in 2 days, remember just how lucky you are. Those tedious tasks are a privilege bestowed on you as a parent. Just as it was my privilege with my older children. I just didnt appreciate how much all those things I once bitched about would really mean. Now I have the privilege of modifying everything in my home and my life for my miracle baby who despite it all still manages to get into trouble in her own way and I LOVE IT!

Polymicrogyria awareness

Polymicrogyria awareness: http://youtu.be/2R53xrwzXZQ

Schizencephaly awareness

My schizencephaly awareness video: http://youtu.be/lRDi7QsDS3k

Letting go and forgiveness

Its so easy for an outsider to judge, make a blanket statement, and give well meaning advice. I know it is not meant to be malicious or hurtful but some things sting none the less. As positive as I try to be, I also have to be realistic.  Having unrealistic ideas and expectations will only lead to disappointment and heartache for all involved. 

First of all the reality of schizencephaly and polymicrogyria is not always a good one. The fact that Jaylyn has both of these rare brain anomalies leaves me with so many questions and worries.  There is very little research but I have read every single scholarly article and medical journal entry that I could find on both. I have joined support groups for both. I have spoke with parents of other children of both and a few that have both just like Jaylyn.  I have educated myself more than most of the specialists Jaylyn has seen. Although Jaylyn is not presenting as the text book definition of either, and is making some promising progress she will not "get better". Her brain is severely malformed and nothing will change that. When we first got the news, the neurologist went through the MRI results slide by slide, explaining the images and the parts of her brain that were effected and what we can and cannot expect. 
What I was least prepared for is the blame. I blamed myself. I blamed environmental exposures, I blamed inept care, I blamed anything and everything.  I am so full of anger, hurt and confusion.  Since Jaylyn's 1st birthday is fast approaching, its time for me to let go of those emotions, and stop blaming myself. 

Theres no text book on parenting thats for damn sure but at least you have friends, family and Google to provide all the advice one would ever need. But special needs parenting? Someone that could relate to your specific situation?!? The chances of that are few and far between. I belong to 12 online support groups for the various diagnoses Jaylyn has. Some groups are for networking and others are for adaptive equipment ideas etc. Including the one I created and maintain myself in hopes of raising awareness.  Awareness for 3 extremely rare diseases that even in my 15 years as a special needs pediatric nurse had never heard of. And believe me, I have worked in places where you would think you had seen and heard of it all!  So what makes an outsider or a doctor whos only seen my child a few times such an expert on my child?  What makes them such an expert on me? Who are they to tell me to cheer up and stay positive?  Do I not have the right to grieve for the child we were expecting and planning for? Do I not have the right to cry when I want to cry?  This by no means makes me a negative person.  It makes me real. I look forward to the positives in my life. My children are my everything.  They are my heart and soul. They are the 1 thing I know I did right! And I can say this with pride and without reservation because I get compliments on their manners and behavior all the time.