Good Grief

The months after Madi was diagnosed with CP at the age of 9 months old were not pretty. I was much younger & forced into the unfamiliar world of special needs. I was sad, angry, disappointed & at the same time, relieved. Relieved because I knew something wasn't right but couldn't get anyone else to see it before she finally had that 1st recognizable seizure that lead to her diagnosis. I remember the stress getting to me so much one day that I had a physical reaction bad enough to necessitate an emergency appointment at my OBGYN office to make sure I wasn't pregnant & possibly miscarrying (I obviously was not as Madi is my youngest child). I couldn't see my regular OB - I ended up seeing the nurse practitioner instead. She checked me, confirmed I wasn't pregnant/miscarrying & asked me if there was anything stressful going on in my life. Poor thing opened up a can of worms she was not prepared to open. After I finished explaining what had been going on with Madi, she collected herself, picked her jaw up off the ground & said "Well no wonder your body is reacting this way - that is a HUGE amount of stress. We need to get you on some meds. I'm going to write you a prescription for Lexapro." I turned it down. I told her I didn't want meds. I hate meds. I'm the person that gets drowsy with tylenol. Anytime the doctor prescribes something to me, I usually ask for half the dose of whatever they want to give so I can function. Anyways, she ended the appointment with "please let us know if you change your mind or feel like you need help".

Well less than a year later, after dealing with a ton more seizures, hospital trips & the craziness that comes along with caring for a special needs child along with an advanced toddler running around, I had another appointment with my regular OB for the annual checkup. I decided before going into that appointment that I was going to ask for help...that I was ready for the medication offered to me before. I was SCARED & so very emotional. I broke down almost immediately after he entered the room. I explained everything that had been going on & told him I thought it might be a good idea to take them up on the meds offered before. He gave me a response that I did not expect. He said "No, you do not need meds. You need to grieve." I was shocked. I opened up & asked for help - which for people who know me well, you know I don't do this a lot (or easily). I worked up the courage to ask only to be turned down. I left that appointment more upset than when I arrived.

But you know what? He was right. I needed to grieve. I needed to grieve the loss of the child I had built up in my head. The one I imagined before she was born, the one I imagined being able to run around with her sister, being just like Cait but also her own person - what all parents do without realizing it when they have children. I needed to stop denying the grief & begin the acceptance process. Accepting Madi as she is & focusing on whatever I can do to give her the best life possible. Over the years my feelings towards that moment with the OB & his response have changed. I'm grateful for him not sugarcoating, for keeping it real & not wanting to throw meds at me to fix things.

What he didn't say but I've learned is that the grief never goes away. There is a small part of me that is still to this day - sad about her diagnosis. I don't think that will ever go away. It just doesn't take over our daily lives like it initially did. Just like anyone who grieves a loss - there are stages to it. Denial, anger, bargaining, depression & acceptance. The difference here is that there has been no passing on so I feel like I'm on a loop with the stages. Madi's still here & there are constant reminders of the differences between her & other children her age (& younger) - especially now that she is so much older. It has been hard over the years to watch other children grow - to do things so easily that Madi has to work SO hard to do, to watch babies that are so much younger be able to crawl, walk, roll over, eat, run, etc. with no problems. It doesn't mean that I don't celebrate these accomplishments with my friends & loved ones or that I don't want to be a part of it - I feel honored to be able to witness it all. There are days where it's harder to watch (usually on days where Madi is struggling) - but I am always so proud of each kiddo & their individual accomplishments. I'm grateful for the people in our lives who don't shield their kiddos & their accomplishments from us because they're worried it'll offend us or something. While it's hard for ME, it doesn't mean that should make YOU feel bad.

I've been thinking about the grief a lot more recently as we've been working through the issues with Madi's eyes & her vision. I find myself deep in the grieving process again similarly as when she was very first diagnosed almost 13 years ago. I went through a smaller bout of grieving with the trach & again with ostomy/belly surgeries. Anytime something major happens, it hits me a bit but I bounce back quickly. This time though? It feels different. It's more serious. We don't know why this has happened. There are theories being thrown around but we just don't know. Just like when she was a baby, I knew something was wrong...I asked every single doctor she has about her eyes, took her to multiple eye appointments, I pushed & I asked questions...I wouldn't let it go. I made sure to advocate for her the way I've learned to over the years - sticking with my gut instinct & again, here we are stunned by another diagnosis because they couldn't see what I saw until it was too late. Now she has lost vision in one eye & the vision in her other eye is different than before. We're unsure of how much, if anything, she can see out of that eye. Her beautiful eyes have changed forever. Those beautiful eyes that I swear she could use to communicate with me - she can't do that anymore. Those big blue eyes are no longer the same color. Even her eyelashes have changed. I swear part of the spark that make Madi the person she is...has been dulled by this. Her attitude is a bit different. She seems more serious, more tired & I cannot begin to imagine what she must be thinking or feeling. It must be so scary to lose your vision. Then to be in her position where she can't communicate that to anyone.

It is heartbreaking to think about. It is heartbreaking to watch. My 13 year old who required glasses for being far sighted, for an astigmatism (which we were told was getting better) & suffered from nystagmus (eye shaking) & that's it for almost 13 years - is now partially blind out of nowhere. Try to process that. Think about your normal, typically developing child - one day they're living life normally & then one day they are blind. While Madi isn't society's definition of "normal" - this is what I feel has happened to her. Just because we have dealt with so much over her lifetime...it doesn't mean I was more prepared for this or that it makes me stronger than anyone else. I never expected this. It was never communicated to me that this was a concern or that it could happen. Just like anyone else would be...I am shocked, saddened, overwhelmed, confused & a big list of other emotions. I can't remember a day since the glaucoma became apparent & confirmed that I haven't cried over this. It sucks. It's unfair. It's hard to watch her struggle to look for things that she could see easily before. To watch this determined young lady who already has to work so hard in everything she does...have to work even harder than before to do something so simple to everyone else. It is absolutely heartbreaking to walk into a room, have her looking right at me & not respond to my presence until I say something...whereas before? I would walk into a room & as soon as she saw me, her entire body would react & she would say my name over & over. That might not seem like much, but that moment made my day every morning. Seeing that smile when she'd see me after several hours of being apart...it's enough to make you feel happy no matter what kind of day/night you've had.

She will be ok. I know that. I will always make sure that she has the best life I can give her. No matter what. I will find ways for her to enjoy the things she loves regardless of her visual status. We will adapt everything. At home, at school, all over the place wherever we can... We will learn new ways to work with her & be thrown into yet another unfamiliar world that I'm sure we will get comfortable with at some point. Things will continue to move forward. Things will get easier over time. I will try to get to the bottom of the why/how this happened.

For now though, it's time to finish this loop of grief.

Beware: This Post Is Not For The Easily Offended - Don't Say I Didn't Warn You.

I can't keep this in any longer. I'm sure there are going to be people who will not like this post. Who will be offended. Who will be uncomfortable with it. Who will want to try to answer these questions that can't be answered. Please do us both a favor - don't. Please don't try to answer. I actually don't need you to try & console me either. It's not that your support isn't appreciated but this isn't the response I'm looking for right now. This is just a vent. This is something I need to do because I know there are people out there who will understand this. What I'm really hoping this will do is reach someone who thinks they're alone. Whoever you are - you aren't alone. There are so many of us caregivers out here fighting the same fight you are. Maybe not the exact same battle, but you know what I mean...we're all wondering the same thing about our kids: WHY? Why her? What did this sweet, innocent child do to deserve all of the shit she has to go through? Why must she be forced to struggle so much? Why must so much pain be inflicted upon her? Don't give me any of bullshit answers like "she was born special for a purpose", "she was given to you because you can handle it", "she is teaching you a lesson", "God only gives you what you can handle", "you are lucky to have had her blessed to you", etc. Bullshit. Just bullshit. That's not what I'm asking here. I'm not asking why she was given to me. I'm not asking about what I can handle. I know my kid is special. She's MY kid. She was destined to be special no matter what. BOTH of my daughters are amazing human beings that I am convinced have sucked all of the awesome out of me & kept it to themselves - leaving me as a shell of a person who used to be awesome but now I'm just their bitch. Happily, of course...I'd do anything for them. Like I said, you might not like this post. I'm not sugar coating here. I want to know why my 13 year old daughter was picked to be so "special" as people like to refer to her. WHY did she need Cerebral Palsy? WHY did she need the seizure disorder? WHY couldn't it have stopped there? No NO, let's add hydrocephalus, Crohn's Disease, Ulcerative Colitis, Asthma, a G-tube, a trach, a ventilator, oxygen, a god damn ostomy bag, a wheelchair, DAFO's, nystagmus, the longest list of medications known to man, breathing treatments, physical therapy, occupational therapy, speech therapy, nurses, lab work done so frequently that it takes forever to find a vein to get blood from, over 60 hospital trips, 10 different doctors she sees on a regular basis, and NOW? We get to add glaucoma to the list! WHY? What does SHE need to learn from all of that? Why must my beautiful daughter who has to go through so damn much already have to endure more? I don't understand. Why must this be her normal? Why does she deserve to think that this is all ok? It's not ok. It's not fair. She doesn't deserve this. No kid deserves this. Just...why?

The Hopeful Slacker

I'm currently in the process of getting Madison & I ready to go for an overnight sleep study at a local sleep center. We are scheduled to be there by 830pm & should be done by 6am. I'm nervous but anxious to get this done as it could give us some answers regarding her sleep patterns, her seizure activity while sleeping (most of her seizures happen as she's falling asleep, in the middle of the night or right after she wakes up), could tell us if she suffers from true sleep apnea and whether or not she can be taken off of the ventilator she's been on since her hospital stay in May. That's the biggest question...can we get her off this stupid ventilator? She's been tolerating the switch from being on it for 10 hours a night to 6 hours a night just fine so I'm hoping that they are able to wean her off of it more. That could put us one step closer to getting that trach out. Keep her in your thoughts tonight for a peaceful night of rest & wish me luck that I can stay awake! I'll blog more about it tomorrow or the next day. ;)

Madi aka The Hulk

Aren't these glasses SO cute?

Yeah, I think so too. Madi did too when we went to pick them out. These were sort of a big deal because not only were they from the adult section but they are plastic & most importantly, the first pair of glasses we have picked out that do not have the cables around the ears. I'm sort of regretting that last part now because this happened...

This is the second time this week she has ripped them off her face at school while someone wasn't looking & either bent the frame or now broken them all hulk style.  Look how remorseful she looks...

Yeah. She's heartbroken. 

OH SNAP...2 days in a row!

That's right, a whole two (count them - 2!) days in a row of blogging. That's pretty darn good for me. Today's topic? Nada. Just saying hi. So...hi. Ok ok, I'll say something else. I'm having a bit of an inner battle with myself today (totally winning btw). Madi has a nurse assigned to her at school that comes to our house each morning, checks all of Madi's equipment, is supposed to run through a checklist, gets on the bus with her, goes to school with her, does all specialized care (10am straight catheter, 9:30 & 1230 g-tube feedings, all suctioning/trach care, etc.) & then rides home with her, gives me a report of the day & leaves until the next morning. Now I like her & so does Madi. She has a fun energy about her...HOWEVER I find her to be a little unprofessional when she comes over to the house. As I'm getting to know her more, I'm starting to feel slightly uncomfortable with her & I'm not quite sure how to deal with it. I'm guessing you want examples as to why I'm feeling that way, right? Well, here you go: Example #1: I'm a nice person (for the most part) & offer coffee to people when they come over to my house at the buttcrack of dawn (alright, it's 8am but still...I need coffee by then because I'm still a zombie). It's what you do. The 1st couple of mornings, I offered coffee to this nurse & the other one training her. One morning a couple days into it, I was in a rush & actually had plans to go out for coffee so I didn't make any for myself. I was zooming around the house & didn't even think to ask if they wanted it especially since they both walked in holding coffee cups. The nurse comes in, sits down, holds her cup out to me & says "I'll take what I had yesterday." Uhm, what? Did I look like a waitress? Don't you find that a little rude? She didn't even ask...she just kind of assumed & ordered. Granted I told her if she ever needed coffee, I always had more than enough & I really don't mind sharing but it was the delivery of the "request" that I didn't appreciate. Saying, "Hey, would you mind if I had a cup of coffee?" or maybe a "Have any coffee this morning?" would've gone over way better. I think the other nurse caught my face when she did this & had a talk with her about it because she hasn't "requested" like that again but now that the training nurse isn't there anymore, she still asks for coffee almost everyday in an expectant type of way. It gave me a weird vibe about her. I'm trying to not hold it against her because really? She's making sure my daughter is cared for daily at school & a cup of coffee daily is a small price to pay for that kind of care. Example #2: The nurse has expressed a dislike for the teacher & the way she runs the class. By "expressed a dislike", I mean she's smack talking. She refers to the teacher as "crazy if she thinks I'm one of her aides in the class...I ain't there for her especially if her greedy butt doesn't want to watch Madi for me for 2 seconds so I can go to the bathroom". She's having issues integrating into the classroom she has to be in everyday with other kids & adults. She's right saying she's not an aide. She's Madi's one-on-one school nurse & she's there to assist her all day & only her. She could actually get into trouble doing any procedures on any other kid in class. I'm glad she brought this to my attention but the way she's going about it & the attitude I see her expressing leads me to believe that the reason she is having a hard time getting along with the teacher is because she's got that bitter attitude. What really bugs me about this is that she comes to me like I need to do something about it. I can talk to the teacher about the things the nurse is bringing to my attention like that fact that the teacher seems to be afraid to take care of Madison by herself without a nurse present (Have I mentioned that Madi is the very first kid at her school to EVER have a trach or have the need for oxygen? Yeah...we are essentially training them for future students) BUT to ask me to tell the teacher that the nurse is not an aide & she doesn't like it? Yeah...no...she needs to have that discussion with her or her supervisor instead. Telling me that Madi isn't getting the proper education & asking me to deal with that is one thing but asking me to be the monkey in the middle about her issues with the teacher is not cool. I'm Madi's advocate, not hers...isn't that kind of like her dilemma with the teacher asking her to an aide? Example #3: So remember how I said that the nurse has a checklist she is supposed to go through when she comes over? I said supposed to because Madi isn't allowed to go to school without having a certain number of supplies (suction catheters, a FULL oxygen tank, gloves, a back up trach, etc.) Well this nurse has been showing up progressively later in the mornings & on a couple of different mornings she's shown up at the same time as the bus & doesn't go through the checklist. She just assumes everything is there. Now I appreciate the fact that she thinks I'm smart enough to have everything but to be honest, I can't say for sure that I am. There are evenings that I don't get to go through Madi's backpack/notes/equipment until the next morning right before the nurse gets there & I could actually forget something. The school nurse AT the school is a stickler & would definitely be ticked off if she knew all of the equipment Madi is supposed to have with her at all times wasn't accounted for...the nurses could actually get in major trouble for not having those supplies especially if an emergency happened. When I actually said something to the nurse one morning about making sure to check the checklist, she got all offended & said "I can't help if the bus (the one she takes to my house daily) is late & I can't go through all of this in time. You're supposed to make sure everything is there. I'll check it after I get to school." This is when my feelings towards her started to change drastically. She's new to this district/state & doesn't have the knowledge of the system that I do. I know that she is responsible for checking everything off every.single.day. Not after she gets to school...before she even gets on the bus. I mean, what's the point in that? How could you restock supplies needed from home at school? I actually had to call the school nurse for that to have her explain it to the nurse. She did it for a few days & now is back to glancing without actually checking thoroughly...like today when she came to my house, set her things down, went to the use the bathroom, came out 20 minutes later right before the school bus got there, glanced at the bags quickly & then ran out the door. The only other complaint I have is that she doesn't pick up after herself when she's there. This is actually become my biggest pet peeve since we started having home health nurses in the house on a regular basis. When did people stop being taught to leave other people's houses in the condition it was when you arrived in it or better? I was always taught that if you took something into someone else's house that could cause a mess, you should make sure to dispose of it properly & if you are offered a drink, snack, etc. that you make sure the dishes are taken to the sink instead of just leaving it on a table or something. You don't leave your trash on a couch, on the floor, in a bed (I'm constantly finding the used saline bullets, piece of foil from the lubrication for Madi's catheters IN her bed - sometimes scratching or cutting her), on a table, etc. It's disrespectful. It's poor manners. It's extremely frustrating to not only be responsible for picking up after your own family but also other adults that should know better. Ugh. Wow, apparently I needed to vent a bit. Ooops. So you're probably reading this thinking, "dude, call the school & get her ass fired!" I thought about that. I keep thinking about that. She's definitely irritated me a bit but maybe talking to her to attempt to get things straightened out might be a better course of action. Why? Because what if they can't hire another nurse right away? What if the next nurse is someone Madi doesn't like & she starts to shut down at school again? What is the next nurse is completely incompetent? I know that's a lot of what if's but I've learned I have to pick & choose my battles wisely. This nurse is someone Madi likes & does respond to...shouldn't that be enough to outweigh the negative things I've talked about? Shouldn't I be satisfied with that fact that she makes sure that Madison's needs are tended to all day? What do you think? What would you do if you were in my situation?

Blog Fright

Apparently I have blog fright...it's like stage fright but with the blog. Duh. I'm sure you got that but I've decided I'm just going to type like I talk so you don't get a super short post. By you, I mean whoever decides to read my ramblings. Anyways, I digress... I post on Facebook at least once a day. When something crazy happens, I go write a little something-something about it whether it's a status, a LONG post in a private board (what up Mi Casa ladies?!) or maybe a picture/video/something that shows my mood. So why is it so hard to blog? My life is definitely crazy enough to do it. Hell, that's why I started this blog. I wanted to have somewhere to ramble & possible reach out to other people/families that have a crazy life like we do. Maybe help each other. Even use this as free therapy like a diary...well maybe not like a diary because even when I had those as a kid, I felt like it was too much of a commitment. Hmm...interesting, maybe I should work on that issue. This is also to keep everyone near & dear to us but far away in other cities updated on our lives. Life gets too crazy to call each person & let them know how things are going. Wouldn't it be easier to just go to one place, say what's going on, people could check it out when they have time, reply & then go on with their day? Yes. It would. Apparently I just like to do things the hard way. I think the only way to get over my blog fright is to disable the blog. Just kidding. I need to write more. I wish I could write everyday but I know that's asking a bit much for now. So at least once a week I'll be posting something. Even if it's just a picture or a link to someone else's blog that I found interesting. If you don't see something from me, ask me what's going on...maybe I need to blog about it. ;)

A long overdue rant...oh & hi! =)

Not sure I want to start another blog post with a "long time, no see" since it's more than obvious that I've been neglecting this blog. It's sad really because I feel like I have so much to say but totally forget that this is here for me to use as a therapuetic outlet & another way to communicate what's going on in our world with the rest of the world. I've been using Facebook like crazy since it's the quick route but still feel like I'm not getting "everything out" so to speak. So many changes have happened since I last posted. We've moved into a new to us house (like 1.5 years ago), Cait is in junior high (yikes!), Madi is in 4th grade (which means new teachers, aides, nurses, etc...double yikes!), I've been dating a wonderful man for the last 3 years named Rick (aka Guy - Madi's name for him), got a dog named George, & recently decided to take my hobby (baking) a bit more seriously. I finally decided on a name for my business - Rainycakes. You can check it out on Facebook: https://www.facebook.com/RainycakesLV For today's post (rant), I'm going to be focusing on the Madi school portion of that update. The nurse at Madi's school is...well, thorough. Thorough in that lovable, annoying way where you kind of love & hate her at the same time. She calls me if Madi makes a funny noise (you know, like snorts or something)...OMG SHE'S GOT A NASAL BLOCKAGE! Ok ok, it's not THAT bad but you should hear some of my saved voicemails from her & her concerns. Don't get me wrong, I am so grateful that she's paying attention to my child. I've heard the horror stories of the children that come home with a high fever that they've probably been running all day, coughs, seizures, sniffles, etc, that go unnoticed or aren't taken seriously. It could be much worse but it's still annoying. Today's School Nurse Dilemma: Madi is on a formula called Elecare. On the feeding orders for school, the GI doc stated that Madi was to be given ELECARE formula. That's it, no specific version listed so that we could change it if needed & not have to worry about changing orders constantly. Up until October 2012, we had been giving Madi the infant version because that's what the supply company was providing us with monthly & I had no idea that there was a junior version. There's actually no real difference between the 2 since we were already using a 30 calorie formulation with the infant version. The junior version only lists the 30 calorie formulation instead of the 20 calorie formulation option listed on the infant. (wow, so wordy & confusing...lol) Anyways, I questioned the supply company about it & they changed the orders right away. They started sending us the junior version since Madi IS over 1 years old & should be getting the junior version. Nothing changes as far as formulations go. Same 3 scoops with water during the day (4 times a day) & 19 scoops at night (she gets the majority of her nutrition overnight by feeing pump so she doesn't have to be hooked up all day). HERE is where we run into an issue. We had a bunch of leftover infant version still. It was going to expire before the new junior version, so we've been using the infant version until it's gone. Well this week was the first week I've sent in the junior version to school. The nurse informed me that she will need specific orders stating that she can administer this formula to Madi. If I don't get the GI doc to send her new orders before this afternoon's feeding, she will be giving Madi only water OR I need to personally drive to the school to feed her myself (that was the nurse's preferred choice - she still doesn't understand that I'm not a stay at home mom that can come in at a moments notice). I asked why she didn't need the specific infant version language on the orders & she didn't have an answer for me. Based on her explanation as to why she needed the new orders, wouldn't you think she would've fussed over me sending in the infant version without that being indicated on the orders? Thoughts? Am I wrong on this? Overreacting? *Sigh* I've put in a call to the doctor already asking them to look out for the fax from the school & explained the situation. The nurse kind of sighed & snickered at the idea too. Hopefully they get this all worked out ASAP. Not that I mind going to Madi's school & hanging out in the afternoon, but there's that whole work thing I need to do too. Thanks for reading & I'll be back soon. :)