Grieving the Loss of 'Normal'

If you know me, you know that I detest the word "normal". Maybe it's because of the Princess' autism diagnosis, but I think I've always disliked it. I've never truly believed that there was any such thing as "normal". Then again, I suppose there could be several definitions, or interpretations of "normal". The "normal" that I grieve is one of a different caliper.

Upon receiving the Princess' diagnosis, it shattered any remaining illusions that I had built up in my mind. To me at that point, "normal" was going to be watching my daughter grow, learn and try new things. I was going to sit in amazement at her ability to pick up words, watch with amusement the clumsy learning to roll, crawl and eventually, walk. I would baulk at my toddler's new found independence; while showing pride in my wide beaming smile, I'd of course secretly be wishing my little girl would remain my baby forever. After all, this is what MY peers where doing. The new mommies of little ones right around my age, in all different walks of life, from all different parts of the country.

So of course, when we received the diagnosis, my world, my dreams and fantasies came crashing down around me. I definitely have gone through many different phases of emotions since then. The most underlying of course is love for my Princess, for my Prince. I blamed myself for so long, that I almost didn't know what it was like to not feel guilty. It wasn't until recently that I've started to come out of this tunnel, and with the light that I see, comes a bit of clarity.

I've come to the conclusion that I had to grieve. I still do. Like the loss of a loved one, a diagnosis of autism-- Or any other illness or anything that affects us for the rest of our lives, for that matter-- can completely rock your world.  You have effectively killed off your fantasies of how life would have gone, could have gone, should have gone. Life as you know it, or have dreamed of it will never be the same. I now understand that I've had to go through my own five stages of grief. I'd like to share it with you, Lovelies.

1. Denial: 
My denial phase actually went on before we even received the diagnosis. I denied there was even an issue for so long. "Oh, look. She's holding her bottle now, she'll be fine.",  "She's just being stubborn, why should she if we will for her?",  "All that eye contact she gives me! Nope, no problems here!". The list can go on, but man. If denial was a river in Egypt, I would have flooded it with my additions. Absolute mayhem.

2. Anger:
Oh goodness, this one is what I feel is the most selfish of all, for me at least. Those who truly know me, know that I haven't always had the easiest of childhoods. I've never seen myself as a victim, I am a survivor. Once we received the Princess' diagnosis, that changed for a bit. I was angry! All I could see was myself and my life. It was gone. "Why me?" I'd ask myself. "Haven't I been a good enough person? Haven't I been through enough?" I was so focused on what this meant to me, to MY life, that I never stopped to think about one thing. This wasn't happening to ME. This was happening to HER. She was the one living in a body that wanted to betray her. SHE was the one struggling to get her want or need from herself and communicate it with me. Not the other way around. Once I understood this, the anger left. For the most part at least. This is one that likes to rear it's ugly head occasionally. Just to a much lessor extent these days. As soon as I was able to let the anger go, that's when the next step came in.

3. Bargaining:
Oh the bargaining. I sure did bargain. "Maybe if I had her do more tummy time as an infant...", "If only I read to her more...",  "Perhaps if I had just done...". Boy did I blame myself. I knew that this had to be something that I did or didn't do. This couldn't have happened to her if it weren't for me! It's taken time, but I do understand that it was absolutely nothing I did or didn't do. It just is. It's not because I vaccinated her, or didn't. It's not because she didn't go to daycare and get social interaction. This was meant to be her existence; and by proxy, mine.

4. Depression:
They say this one can come in many forms. It doesn't have to be debilitating sadness. We each process differently, after all. But boy did the tears flow. I cried at the Princess' loss of a "normal" life. I cried for her, I cried for myself. I cried for the fact that my world was shattered. I cried because she's the one who has to deal with it all, and she never asked for more than to exist. When the tears stopped coming, I was sad. Sad at the struggles, sad for the Prince the fact that he will most likely love his sister so much that he my decide to take care of her. When does he get to be a kid? That's one that I am still working on.

5. Acceptance:
Ah, the fifth and final stage. This is the one that it has taken me longest to get to, and I'm not always sure that I'm quite there yet. Almost. I know that autism just is, and I am learning that it is not the end all that I once thought it was. It's taken time and support to come around to this finding. I never would have come to this point if it weren't for the support of those around me. Those who loved the Princess and myself so much that they became our own cheering team. To those cheerleaders-- and I know you know who you are.-- Thank you. We couldn't have come this far without you.

The Cold Bug Strikes Again

Hello again, Lovelies. Welcome back. September marks many things. The end of summer and summer vacation. Fall is on it's way in, and with that comes colorful leaves, cooler weather and the start of school. Which brings me to the next thing that September usually brings. The start of the cold and flu season. It's back in full swing in our home, and frankly this is why I hate this time of year.

Let me tell you about probably one of the worst days I've had so far. It all starts with a certain Princess starting to sound a little 'off'. She's drinking her cups a little slower, seems to be breathing through her mouth a little. Was that a sniffle I detected? The next day, I learned that yes, it was in fact a sniffle. Two days later, the Prince seems to be starting this same process. Flash to Sunday evening, everybody is trying to wind down for the night. The Princess is given her night time meds, the Prince even seems to go down early. I take this as a moment to get some extra shut eye myself.

At about 1:30am, I awaken to the Prince screaming his little heart out. He's happy to see me, I try to get him a bottle and a snack. He's calm and settles back down into bed. Again, I decide to do the same. 3:30am comes around, and same story. We actually repeat this process a few times over the course of the night. At about 7:30am, we're back at it, and I have to admit, I'm cranky. As I am cursing the husbands name-- Audibly to him, I'm to find out later.-- I step out of my bedroom onto the kitchen floor, and before I know it my feet are out from under me and I've landed-- Hard.-- on my side.

To say at that moment I felt like one of the kids is an understatement. In that moment, my actions are exactly what I have witnessed my children do: Lay stunned for a moment, shocked that this just happened. Once that feeling wore off, I cried. Yes, I surely did. The King then came out to find me on the floor, crying and both children crying as well. Once I got over the fact that I fell, I pulled myself off of the floor, assessed my own injuries, then continued on to take care of feeding the Princess.

I'd like to say that's where the story got less chaotic for me, but alas, I cannot. You see, both the Royals are sick, and now I am injured. The King has to go to work, so I did what I do best: push through and hope for a smooth day. Half of my goal came true. I did push through. At different points of the day, I was dealing with one or the other screaming. One's nose is running, the other can't breath, we need a new movie. If it wasn't one or the other, it was both.

The way the Prince was screaming most of the day, I'd swear the "man cold" is starting way early. Is that even possible? He's not quite 2 years old yet, and still he screams louder than his sister on this one. He wasn't eating, or drinking. Just stuffy and miserable. In a moment of frustration, after the umpteenth attempt to get him to eat on his own, I busted out a jar of baby food. For the first time since he has started eating table food, he opened his mouth and allowed me to feed him this puree.
For the first time in the house all day, there was peace. Unfortunately, this took me until about 4:00pm and countless baths and tears to figure it out. I'm not saying it all got better, it just got a little easier to deal with. When the King got home, I did have a second pair of hands to help, but we still had many moments of chaos.

Today, the Prince has eaten eggs, at least. So, he's feeling a bit better. The Princess is foregoing her usual two jars of food a sitting for one. Anything more just increases the reminder that her nose is stuffy. So while we are doing more feedings, she's at least still eating. I can tell she's feeling a bit better, but I have a feeling that as far as moods go, it's going to be a while before she's truly her happy go lucky self.
I'm healing too, still very stiff and bruised-- Which is made truly known when the Princess kicks the leg I landed on.-- but I'll survive.

On another note, I did receive a phone call yesterday about the Princess' medical diagnosis. It seems her referral was approved, and now we just need to make appointments and keep them. I'm so happy to see this forward movement in the process that I just can't seem to sit still. Or maybe that's the sick Royals. Either way, I will most definitely keep you, my Lovelies in the loop! Until next time, stay healthy!

"You're Doing a Great Job"

Hello there, Lovelies. I know, it's been a while. It's been crazy busy, I swear we go through these cycles that last for a few weeks of chaos, then back to our "normal routine" whatever that may be these days. So what's been keeping me so busy, you may ask? Well, I recently had to have a tooth pulled, our washing machine broke down and on top of all of that, we were still struggling with sleep issues. Don't cry for me, Lovelies. The truth is most of these things are solved now. Most.

So finally, I made the appointment with the Princess' doctor to address the sleep issues. Due to lack of a car, I had to bring both of the Royals with me. I normally prefer to find a babysitter for the one whom the appointment isn't for, but when it comes down to it, you have to do what you have to do. Seeing as how it's the first week of preschool for the Princess, it's more important now than ever to really get these sleep issues under control. So, as usual, I planned my outing down to the very tiniest detail I could.

I made sure to find the diagnosis paperwork, should the doctor's office need it. I pre-packed everything I could. I couldn't find my purse, so I used my son's backpack. Yep, I was the mom carrying a backpack that was clearly for one of her children.-- My hubby later told me that he had found my purse, it has slipped behind the washer. Where it still sits.-- Everything was going according to plan. OK, maybe not fully according to plan, we were about ten minutes late to the appointment.

We arrive at the doctor's office, and I get the Prince out first. I set him on the seat while I work towards getting the Princess out of hers. When I did, I set her down so I could pick up the Prince-- My first mistake-- the Princess tried to bolt. I grabbed her, and we made our way into the parking garage to the elevator. The Princess had never stepped onto an elevator before, and that tiny gap between the car and the floor of the platform really threw her off. Carefully, she did. Riding in the elevator, she stared at the floor that she could tell was moving under her, but the room didn't look like it. I couldn't help but giggle at the wonder on her face.

We get into the office, and the first thing she does is start running back and forth. I checked us into our appointment, all while keeping an eye on my little lady. It was an hour long wait to get back to the examination room. All the while, the Princess was running. I had tried a few times-- To no avail.-- to get her to sit next to her brother on one of the chairs. At some point I was finally successful, but I had to kneel in front of both of them to keep them entertained.-- By the way, if you were in the office that day, and I blocked your path, I am truly sorry.-- another little girl, no older than 5 years old sat on the other side of the Prince and smiled at me and the Royals.

Eventually, the Prince demanded to be picked up, and once that happened getting the Princess to sit in one spot is next to impossible. So she started running. Someone left the door to the back rooms open, she noticed. Within seconds, she had run into the back offices. You bet, I was the mom who then carried my youngest in my arms while running after her. I got a friendly smile from the nurse, and I asked which way to go to get back to the waiting room. After giving me directions she said, "You've got your hands full, huh?"

What I wanted to say was, "Nah, just getting my exercise." or something equally as sarcastic, yet positive. All that came out was, "Just a little."

Upon re-entering the waiting room, of course the Princess started running again. The same little girl from earlier decided that it looked like fun, and ran after her. Too cute for words. Finally, we were called back to a room. The usual steps happen, lets check weight. Of course they wanted her shoes to come off, and of course she ran to a supply room before I had a chance to catch her. I set the Prince down, and retrieved her. Got her shoes off, then got her weight.

Next, height. Stand against the wall. As I'm trying to position her, there goes the Prince, attempting to go exploring. Thankfully the sweet nurse did get him, and we got her height-- 3'4", I might add.-- then she bolted down the hallway. Suddenly feeling a pull between the Prince who was right there wanting to explore, and the Princess who is now down the hallway already exploring, I made the quickest decision possible. To chase after the Princess. Finally I caught up to her and got her back, and we were on our way to a room. Thankfully the nurse carried the Prince.

Once in the room, the basics are covered as well, check her blood pressure, get a bit of the "why" we are here today, heart rate, etc. The Prince decided this is the point where he is going to start screaming. I try to change him, no luck. He wont take his bottle, he just wants to scream in my ear. The Princess is going back and forth on being moody, or happy. The nurse finishes her duties and informs me the doctor will be in shortly. While we are alone, I work towards getting both kids settled. Graham cracker for the Prince. He's still not happy. Toys for the Princess-- Yes, I did pack several-- I hear the knock on the door and the doctor comes in.

The Prince is still crying in my arms, and the Princess is losing her cool very quickly. She sees the doctor's laptop and wants to play. When she's denied, that is it. We go into full blown tantrum mode.-- Which is kind of a good thing, because she doesn't generally do this in public, but having the doctor see it was key.-- The Princess went down the list of all of the behaviors: Head banging, heel kicks to the floor, squeezing things-- like my arm, or her stuffed animal.-- All the while the Prince is still screaming in my ear, and the doctor is asking me questions, and giving me tips as to next steps to take for a medical diagnosis-- Yes, we currently have an educational one, that covers her preschool. Once we have a medical diagnosis, I will make sure to let you all know of the difference--  and I am busy bouncing back and forth between children to try to calm both.

The Prince was tired. He eventually fell asleep on my shoulder. We wrapped up the appointment with a sleeping medicine prescription having been sent in to the pharmacy. On the doctor's way out, she told me, "You're doing a great job." Man, those five words meant all the world to me in that moment. I wont go into all the details of getting the Royals packed up and out the door, as I'm pretty sure this post is long enough. I will say, however, that upon getting back into the car and taking my first breath, I looked down and yep. I found the graham cracker from earlier. Down my shirt.

So yes, I was the stereotypical frazzled mom, chasing after one toddler while carrying the other. Clearly overwhelmed. The thing that made it all better was getting the affirmation that I was doing a great job. So to you, Mom in the grocery store with the child having a meltdown because you denied them the sugary cereal or candy bar or toy, you're doing a great job. To you, the parent driving the car while your children scream at you and you try desperately to keep your cool to drive safely, you're doing a great job. To all moms, dads, caregivers, guardians: You're doing a great job.