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

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!

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!

"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!

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

"Everything" happens for a reason

Something I have always believed is that everything does happen for a reason. What that reason is, isn't always obvious or apparent.  For instance,  what is the reason children are born with horrific things? Without getting into a religious debate, this is the very reason I had lost my "faith". I could not understand how a "God"  for whom I was once so very devout would allow such terrible things to happen. Long before I had Jaylyn, Samaura, and even Devon I was a very devout Catholic.  I had taught CCD. Gone to church 2 to 3 times a week. And growing up in NY, my favorite thing to do in the city? The stations of the cross at St Patrick's cathedral.  At one point in my life I had even entertained the thought of being a nun. Holy shit! Yes its true! I loved church and God and even being a Catholic.  A lot has happened to rapidly change my faith and feelings toward organized religion. Being a nurse also had a lot to do with it. Seeing children suffer from horrific things made me question and doubt. Hearing biblical cliches about Gods "plan", that He doesn't make mistakes, and my all time favorite for when things got really bad?!? Its a "test". Im all for prayers, intentions and positive energy. I'm a very metaphysical person. I do believe that what you send out comes back full circle. I have seen it and experienced it too many times not to believe. I consider myself a spiritual person.  The moment I found out Jaylyn had something seriously wrong with her, you best believe I begged the "powers that be" to watch over my babygirl. I also asked friends and family of all religious paths to pray or whatever it is that they do, for her. Just because I had lost my faith, doesnt mean I begrudge anyone else theirs. Especially when the good intentions are there.  The word had spread rather quickly and people from all corners of the world were praying for Jaylyn.  We received blessed rosary beads and a crucifix, Goddess poppets and candles, prayers, chants, you name it! It had taken a week in the NICU but she survived. So had this experience renewed my faith? The answer is a bit unexpected.  It absolutely did! But not in "God", or any other deity. But in humanity.  People from all walks of religious beliefs combined their efforts for 1 purpose, for 1 child. People who for many a reason would either not interact, cross paths, or even get along due to religious beliefs all pulled through for my little girl. If only this ripple effect could reach the areas of conflict in the middle east. Or even right here in America. Im certainly not jumping back on the church bandwagon,  but I do have faith. In myself, in my family, and in the fact that Jaylyn happened for a reason.

No matter what!

Its been a long journey thus far. Knowing there is something wrong with my child, fighting for doctors to listen, a wild goose chase for various specialists and tests to rule out ridiculousness. And now we are here. Now we know. Now everything is confirmed. All of my suspicions,  concerns, and intuition were right...and then some. Im no longer that "crazy mom", or am I? The one time I wish I was wrong, the one time I wish I could fix it, and I cant. All I can do is grieve, get over it, move on and continue fighting, advocating and doing my best. I cant emphasize enough how much I am NOT a nurse at home. Im just mom. I have a new found appreciation and respect for the parents of the children entrusted to my care and skills. Does it make it easier to care for my own special needs child? No, not really, but when it comes to getting her the help and care she needs, absolutely!  Imagine if I didnt pick up on the little things as early as I did. We would still be scratching our heads and abiding by the pediatricians "wait and see" approach.  So being that "crazy mom" paid off. We got the answers, we are on the right path and getting Jaylyn the therapies and services she needs. Im done blaming myself, but with all of the red flags, tests, monitoring, exposure to contaminated water and vinyl chloride, something is to blame. Something was missed. Something was overlooked. I was looking through all of the ultrasound pictures I had while pregnant, and I found one that you can clearly see the malformation in Jaylyn's brain in utero. The date of the ultrasound was in April of 2013, 4 months before Jaylyn was born. Negligence does not even begin to describe my prenatal treatment. There is a laundry list of things that had gone wrong while I was pregnant. I can sit here and go through the "what ifs" and "if onlys" all day long. It will not change the way Jaylyn is, it will not make me feel any better, it will not change anything for the better. However, I hope this can help someone, somewhere. Never give up! I know, no matter what, I wont.

soon to be 11 months...

Looking at my calendar,  if you squint, all of the appointments entered make it look like it has chicken pox.  Today, I realized Jaylyn will be 11 months old this coming week! Wow, where does the time go? Im enjoying a few stolen moments to myself in the kitchen while I make dinner, so I look up what milestones an 11 month old should be meeting. And now....I just want to cry. Why do I keep doing this to myself?  Why do people feel the need to force advice as if its going to "fix her"? We got stood up for a "play date" last week and I cant help but wonder if its because Jaylyn is different. Why did I get my hopes up that Jaylyn could have a little friend? And why was I so hurt and dissapointed?  After all, its not the first time, and Im sure it wont be the last.  I don't want Jaylyn to grow up feeling the way I felt. Having to be independent at a much too early age, your own best friend, and not being able to rely on people when she needs friends, family, or help. She is only 11 months old so she doesn't realize what being stood up means or feels like, but I hurt for her. It hurt me. This is just one of many times in her life someone will be inconsiderate.  She is a red head. If she does take after me, she will be little miss independent with a fuck the world attitude to protect the fragile heart underneath.

My "vacation"

In 26 hours, I will officially be on "vacation" . I had used 2 days of PTO for Jaylyn's last hospital stay and had 2 more banked to be magically whisked away to.......CHOP! for a 6 hour appointment,  a 6 hour appointment.  (Yes I am a Gilligans Island fan, dont judge). Because I work nights, I had scheduled the night before and the night of to be off.  So yes thats my vacation. Meeting with neurology, orthopedics, speech, occupational therapy, speech therapy, measuring for splints and braces, referrals and recommendations for various other clinics like sitting and feeding. Exciting, right?!?! I am actually looking forward to it because its to help Jaylyn.  I'll take day trips to the beach over getting on an airplane any day!

The seizures

As a nurse, I have seen all sorts of seizure activity . From the violent convulsive type, to the staring spells that are easily mistaken as day dreaming. So when Jaylyn had her first seizure, I knew to time it, monitor her vital signs and call her pediatrician.  Jaylyn has complex partial seizures. She will space out, become a rag doll, have episodes of blinking, and briefly stop breathing. Jaylyn's seizures are so infrequent and brief in duration that it has been difficult to capture these events on video to show her neurologist.  All that we do know is what we were told. Basically I feel as though Im waiting for the other shoe to drop. We were told to expect worsening seizure activity as she gets older. We cannot get any guarantee that this will be controlled. We cant get any guarantee that the worsening seizures wont be her demise. We cant get a guarantee that she will be one of the lucky ones that lives into her 20s. Just today I was having a conversation with my 2 older children.  My son was admiring an elderly couple and commented that its nice to see them still together. My 11 year old daughter then began asking what she and her brother and various other family members would look like when they get old. And then she asked about Jaylyn. How do I tell her that is not going to happen? I am all for being optimistic but I am a bigger fan of realism.  There are no guarantees in life. Not even with children. Love them every day!

Such a lonely road

I had an over abundance of support while pregnant.  Friends and family were supportive, excited and were looking forward to the same thing we were...a healthy baby girl. Well...thats not the plan the powers that be had for us apparently. 
As the days, weeks, and months passed as Jaylyn's diagnoses began to unfold, it seemed to scare people away. I even went so far as to post a Facebook status explaining and apologizing like an asshole! I explained that due to our schedules, Jaylyn's appointments and therapies that we just cant pack up and go to cater to everyone else that wants to see her. I extended an open invitation to anyone who wants to be in her life. No one came. No one called. We even got stood up a few times. And some that chose to reach out, were not exactly doing so out of concern. I was told I post way too many pics of my baby girl. I was also questioned as to whether or not Jaylyn's diagnosis and prognosis were legit.  Someone is an over paranoid twat that watched 1 too many episodes of "Catfish".  Its all good, how could we possibly understand what being busy is like, let alone deserve a phone call or text saying you aren't coming?  Being that we are a 1 vehicle household and I am the sole driver, even my days off are not my own. I am responsible for getting 5 people to work, school, practices,  appointments, etc . I couldn't go anywhere or visit my family in New York even if I wanted to, unless of course I can squeeze it into the window of time before my next taxi services are needed. I am by no means complaining. After all, even Jays days off are often arranged to accompany me on this, that or the other appointment.  Jaylyn only gets physical therapy once a week. She will be starting other therapies in the very near future, which will be on other days of the week. For the next 3 years that she is under Early Intervention services, this will be my life. Most people sleep more in a night than I average in a week. So I do like to unwind, relax, spend time with my family and maybe have a lazy day where I sleep more that a couple hours.  Social media support groups are my social life. Sometimes I can go days without speaking to another adult human being. Because Jay and I work crazy conflicting hours, I have to settle for cyber support, cyber hugs and an occasional kissy face emoji. Im not even sure wtf an emoji really is. All that I do know is I love this little girl with all my heart and I will do anything and everything I can for her. That includes advocating and educating. That includes explaining that just because Jaylyn "looks healthy", it does not mean that she is. Do not judge a book by its cover based on a few smiling pics of my baby. Do not down play the severity of something you cant possibly understand. We are still trying to understand ourselves. We are still trying to accept the prognosis. I am honestly still in awe over the outpouring of support we have gotten from complete strangers, friends from high school I hadn't seen....well, since high school. We are still working on collecting funds for her bills and I appreciate all thats been done and hope to one day pay it forward to another family with a special needs child. All the cyber aupport and love in the world absolutely cannot replace a real life hug. 

Guess whos crawling?! Well, sorta

Being that we are fast approaching Jaylyn's 1st birthday, we now have more to celebrate than ever! During my pregnancy I had joined an online pregnancy group and all the mamas that were due in September had all formed a separate group. Of course Jaylyn arrived 2 weeks before her due date, but that did not interfere with the bond and friendships I had formed. As I saw these other moms excitingly posting about their baby's milestones, I became more and more discouraged. There were some days that I didnt speak to anyone at all for days at a time, and these are women I had interacted with daily, for several hours a day throughout my pregnancy,  labor, delivery and throughout Jaylyn's early weeks and months. I was definitely grieving for the child we were expecting and did not have. Yet, we were given so much more. I never would have thought I could learn so much from such a little person.
Jaylyn gives me a reason to celebrate every single day! As bad as this sounds, I was so glad that some of the moms in that group had said their baby couldnt do certain things like clap, why?!? Because Jaylyn can! It was the one thing she can do that some of her little online buddies couldn't do. It brought me a sense of normalcy and accomplishment. No she cant do most of the things other babies her age are doing, but shes definitely making progress with physical therapy! Just last week her therapist had said that she will most likely be a "tripod" crawler. Sure enough, Jaylyn uses her left side to the max, uses her right arm minimally and drags her right leg,but she is moving!  She is "crawling". The intent is there, she wants to move! Due to her disabilities,  she is either held, carried, or in some sort of sitting device most of the time while awake. Lately, when being held, Jaylyn is often trying to wiggle away to the floor in attempts to do her own thing. She wants so badly to move independently. I couldn't be more proud of just her desire and will. She is a fighter, and although we have a lifelong fight ahead, she is the strongest, toughest and most determined person I know. Just because shes still in diapers, does not mean she cant be an inspiration.  She is definitely mine!

Jaylyn's Journey...The beginning

This is your captain speaking. Please buckle up for one bumpy ride! I am hoping that this blog will be therapeutic for me, informative and educational for you, and hopefully keep friends and family up to speed. The intent of this blog is to chronicle Jaylyn's journey. In the almost 10 months she has been on this earth, (and the 9 she spent in the womb)its already been quite an adventure for her.  I would also advise the easily offended, hyper sensitive,  and drama seekers to stop reading now, proceed to the nearest exit button, and bail out. I will not censor myself. Im a feisty redhead with a NY attitude.  Im a seasoned pediatric  nurse with over16 years experience working with medically fragile, technology dependent children from all walks of life with anomalies that would give most people nightmares and scare your tubes tied! Yet at home, I am just "Mom". So although I ha e a tough exterior,  seem desensitized to certain situations,  or come off insensitive or abrasive,  it truly is not the case and merely a defense mechanism.  So if youre still here, Welcome!