Special needs nurse vs special needs parent

If I had a dime for every time someone has said that Jaylyn is lucky to have me as a mom, Id be rich! This is often said to me because I am a nurse. Not only am I a nurse, but for the past 15 years, I have been blessed with caring for special needs children.  I had tried other specialties, looking for my niche. Med/surg, rehab, geriatrics, psych. And although there were many aspects I did enjoy, pediatric nursing has my heart. Special needs kids have a light inside them so few can understand. So many have said to me "I dont know how you do it", "it must be so depressing!". To the contrary, there is nothing more rewarding than taking care of a completely dependent child, perhaps on a vent and in a wheelchair that still manages to make others smile! I have had some heart breaking situations but through it all, these kids amaze me with their strength and differentabilities. Knowing that some of these kids are the way they are at the hands of a parent or caregiver, THAT is heart breaking! But hearing a vent dependent baby use their speech valve for the first time and see their reaction to their own voice? Watching those first steps being taken by a child whos prognosis was sure death? Watching them reach adulthood and have loving relationships of their own? These gifts are priceless! I have amazing memories I will cherish along with the milestones of my own children. 
And then I had Jaylyn!  Not only was she quite the unexpected surprise, so were her diagnoses.  All of them! And then everything there was to follow. The therapies, early intervention,  doctors appointments,  specialists, equipment, explaining to siblings and family. Explaining to friends. Explaining to rude or ignorant strangers. Its never ending. Unless you actually spend a day witnessing all that we do to provide routine daily care for Jaylyn,  you couldn't possibly have a clue just how difficult being a special needs parent is! How exhausting. How heart breaking.  And yes,  how rewarding and fulfilling. 
Whats even more heartbreaking is that I have to leave her to provide the same for someone elses child while unable to afford it for her.
At 14 months old, Jaylyn is still unable to do a lot of things babies her age can do. Hold a bottle? Feed herself? Crawl or walk? No. None of that is happening. Well she still army crawls and manages to drag herself around that way but theres no such thing as a quick trip to a store with such a dependent child. I cant carry her in to a store or appointment and set her down for a second like other babies.
I now find myself not comparing Jaylyn to typical babies anymore, but to patients of past and present. Shes not as bad off as this one but shes worse than that one. I wonder if she will always be non verbal, or be able to say some words. Will she ever be potty trained? Will she lose skills? Or one day be able to do the things she should have been doing at 6 months? I know she is happy and at least partially unaware of her limitations.  Its somewhat comical and heart wrenching at the same time to witness her scootch off the couch and reach for my fingers so she can "walk". Jaylyn's version of walking is completely assisted with total support. Shes not able to fully weight bare but that doesnt stop her from wanting to go either.
So the happy and enjoyable moments I have witnessed in my career also break my heart on the home front.  So is Jaylyn lucky to have me as a mother? I wont dispute that but I will say I am far more fortunate to have her as my daughter!

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.

Diaper Rash, puberty, and manhood-ahhh motherhood!

I didnt space out my children on purpose. Sometimes I feel like I have to hand people back their eyeballs when I tell them the age ranges of my children. 1, 11, and 20! My eldest is my son. And often times my right hand man when it comes to helping with his sisters. Sometimes when its just him, me and the baby, we get funny looks, whispers and disbelief! Am I the grandma of that baby? Are we a couple? We have stopped getting agry at the ignorance and we enjoy the humor of it. No Im not the stereotypical soccer mom. Im far from it! I curse, I have tattoos, I work as hard as or more than your average man to make sure my kids are taken care of. Im not the damsel in distress if I get a flat tire and yes I know how to change the oil in my car too! But that doesnt make me any less or worse of a mother because my kids are fed, clothed, and loved! But it still makes me a target to be judged. But I wouldnt rewind my life to change a thing! Im glad Im not the princess girly girl that has to rely on others because I dont want to get dirty or break a nail. If the pilot light for the furnace goes out, I have no problem getting in the crawl space to relight it. As Jaylyn grows into the little person she is, I see that she does not fit in the same box as other babies her age. And Im ok with that! Samaura, my 11 year old is a career high honor roll student that doesnt follow the crowd and keeps her eye on the prize! She wants to be a scientist.  Something tells me she will indeed become one. Dev is the late bloomer into adulthood and is going back to school but still values my opinion, even about growing out his facial hair. I am proud of all of them! I am always flattered when I get compliments on how polite my children are. Apparently thats a rarity these days. Im proud of how they handle themselves in situations that would infuriate and spark a negative reaction. When we are out with Jaylyn and shes wearing her MAFOS, they do attract attention. Stares. Whispers. Looks of pity. Its pretty sad that we have to go out in public forarmed with responses just in case someone decides to take the next step and say something ignorant and insensitive.  And yes it has happened. Jaylyn is oblivious to it all but Dev and Sam are not. I cant imagine how difficult it must be to be a sibling of a special needs child.  Its pretty tough on me and I do rely on their help....A LOT! So when they get an opportunity to have some normalcy or an escape, I support it. Samaura plays field hockey but also understands if I cant make it to one of her games. Dev works and goes to school. So if hes playing video games online with his friends or plays touch football in the field down the street, at least hes not home constantly being asked to help with Jaylyn.  Whenever I ask, they are both more than eager to help. But I cant help but worry that they might get burned out. I know I have my moments where I need a break too! My escape is often going to work... As a nurse.... Of special needs children.  Not much of an escape when I am a care giver 24/7,my child or not. But its different. I have always loved.my job. And now probably more so! I have also embarked on a direct sales venture that I absolutely love and using the profits toward Jaylyn's care. A simple cold for her led to a 2 week ordeal of 3 visits to the pediatrician.  A trip to the ER and 2 different antibiotics due to a serious allergic reaction. She is ok now and back to her usual happy self! I couldnt help but enjoy watching a riveting game of "this little piggy" between her and Samaura this afternoon before Samaura had to pack for a sleep over. See? The not so typical family is more tight knit and "normal" than most. We just dont feel the need to pretend to be picture perfect. Because we are not. And neither is anyone else!

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!