The Sound of Silence

A rough several months have gone by without a post from me. I think I should probably explain why I don't write very often. You see, I have always hated complaining. For me, it's kind of like that saying, "If you don't have something nice to say, then don't say anything at all." While I do know that saying is not intended for this purpose, it still feels appropriate to me. When I'm having a flareup or things are really difficult and there are many challenging things happening, I don't want to keep writing about the negatives and how difficult things are.  So I usually try to write posts that are upbeat or uplifting in someway. Even if it was a difficult time, I try to find the positive in the situation or else I will try to write about something that I think is humorous. So when you don't hear from me for a while, it usually means that I'm not doing too well, and I'm having a difficult time finding something positive to write about.

The truth is, though, the last couple of months have been extremely difficult. Things of been crazy with Miracle Man, Little Miss, Chub Chub, and myself.

Miracle man is doing well in school in a lot of ways. He has made huge gains in several areas, especially with his speech. But we are still struggling with a lot of things as well. The good news is we are finally getting a chance to go to the Epilepsy Monitoring Unit at the local hospital. This is something that we have wanted to do for at least a year, and now we finally get to go.

The major catalyst for this opportunity is that Miracle Man had an episode while he was at school recently. He was sitting down at the table and the teacher's assistant was talking to him, but he wasn't responding. When she looked at him, his eyes were rolling into the back of his head. Next thing she knew, he had fallen off his chair and bumped his chin. This was the first type of seizure that we have seen where he didn't hit his head hard before having one. So, on the one hand, it's scarier and more frustrating that he had one without bumping his head first. But on the other hand, now we get to finally go to the Epilepsy Monitoring Unit and hopefully get at least one diagnosis. He is 3 and a half years old and he still does not have any diagnosis other than developmental delay, even though every one of his doctors believes he has several things going on. Having at least one diagnosis would be great!

We will be doing this in a few months. I do not have the appointment scheduled yet. I have to wait for them to call me. But, when we do get to go, this is how it works: I will take Miracle Man to the hospital and he and I will camp out there in the room. The entire time we are there, he will be hooked up to electrodes to run a long-term EEG. We will stay there for up to as long as a week. Hopefully we will get some concrete data to prove that he is having seizures during that week.

I am really glad that this whole experience will be in a month or two, and not right now. For those of you who don't know me well, or don't follow me on Facebook, my daughter was just in the hospital for a week. She had a pretty severe kidney infection. We are extremely grateful that she has healed well and is doing much better. She has to go to the urologist next week to have some testing done, and we are hoping that everything comes back normal.

In any case, it was a terribly difficult time on our family while she was in the hospital. It will be much easier the next time I am at the hospital with one of our children for a lengthy time because this time it will be planned. We will know far in advance that I will not be around at home to help out with all of the other kids and pets!

All of the stress and extra work over the past several months has really taken a toll on me. My body is barely making it through each day. I am extremely fatigued at this point. In fact, This week I have been struggling with getting out of bed pretty much at all. One morning, Prince Charming had to get everybody out the door without any of my help.  I simply couldn't get out of bed.

And my pain level has been high as well. Everything hurts. My legs, my ankles, my feet, my hips, my back, my arms, my shoulders, my hands, everything.

When I was in graduate school, I had developed carpal tunnel syndrome. I had to wear braces on my wrists for quite some time. But once I was out of school, everything resolved on it's own. I wasn't typing like a fiend anymore, so my wriss and forearms were able to relax. I haven't had this in a very long time. It's been about 15 years, actually. But, now it seems to be back with a vengeance. My wrists and forearms are so bad right now, I'm having trouble holding anything even as heavy as my phone. I am also having trouble writing, twisting knobs, grabbing at things, and of course typing. This entire post has been dictated so that I wouldn't have to type. Buckling car seats are a particular challenge for me. I try to not have to go anywhere if it means I will have to buckle the boys into their car seats. It is really annoying, quite frankly.

So there's a little snippet of the difficulties, but I do have another positive! Over the last few weeks, I have found a whole community of people out there online who are suffering through fibromyalgia, just like me. I am making friends and connections through Facebook and other social media outlets. This has been extremely helpful to me. Knowing that I am not alone is just  huge. And reading my very own thoughts in other people's Facebook posts has been affirming. I cannot believe I didn't search for these forums before. But, I am extremely grateful that I have them now! And, by opening up to people, I have learned that there are people that I actually know who have this illness as well. I am looking forward to learning a lot from people who have been going through it longer than I have.

That's all for today. No more energy, no more time. I hope you're all having a good week! 😉

Hyperventilating

As is typical, I was in the kitchen this morning getting Little Miss ready for school. Prince Charming was upstairs getting dressed. The boys were watching TV in the living room with our neighbor's son. He had come up to catch the bus with our Little Miss, who was in the kitchen with me at the time. The TV was on in the living room, and it was just loud enough that other noises in the house were drowned out. 

While I was signing Little Miss's agenda for the day, Prince Charming came downstairs and into the kitchen. When he asked me where our little devils were, I responded that I believed they were in the living room watching TV with our neighbor.  When he immediately started calling out for Miracle Man and Chub-Chub, I knew they were no longer entranced by the television. So where were they? And WHICH cereal box had they dumped now?? 

Our calls to them were met with no reply, and we suddenly realized that they probably had escaped to the greater outdoors. Prince Charming rushed outside screaming for them. But still there was no response. I continued to check indoors, but the house was waaay  too quiet, so I, too, rushed outside. 

Outside, Prince Charming continued to call for the boys and finally found Chub-Chub, who popped into view at the bottom of our driveway. He stood there, dumbfounded while Prince Charming asked him where Miracle Man was. However, Chub-Chub didn't respond and Miracle Man was nowhere to be found. 

Naturally, PaNiC coursed through my body as I shouted directions to Little Miss and her friend. We all split off in separate directions, running all over the front and the backyards, SCREAMING for Miracle Man. 

I headed to the backyard slipping and falling down the hill en route, but I didn't see him anywhere. Not on our play set. Not by the mud that he frequently trapses through (despite my begs and pleas to steer clear of it). He wasn't on the hill by the porch. He wasn't by the fire pit. Where WAS he?????????

I ran up the hill in our backyard to the bottom of the driveway. I couldn't see him anywhere. I stood there in my own private hell looking down at our yard and the surrounding woods and lawns, the panic rising up in me. He could be anywhere...In the woods, wandering any neighbor's yard...he could have gone onto the road. I had no idea where to look next.    My baby was    missing.

As I was hyperventilating, I thought to myself where would Miracle Man go? If I were him, where would I be? What are his favorite places to go to outside? 

And then it hit me. There is a path through the woods that we and our neighbors had cleared between our two houses this past spring. He always likes to go down the path to go visit their house. He Loves  them.  And I frequently have to chase after him down the path to keep him in our yard. Sometimes he has even made it down to their house before I've caught up with him!

I raced down the hill, screaming his name. But I heard nothing. I was thinking of all of the possibilities. He could be in their yard, in their breezeway, on their front yard, or...on the road on that side of the neighborhood.  

The same road where this lovely family, who have now become part of our family, had lost their beloved puppy this summer to a car racing up their hill. A very tragic end to a sweet dog. A terrible day etched in my mind forever. The day that my daughter, having spent the night at their house, came home shrieking about the accident. The day that I ran down to find my friends distraught while they looked on as their best friend struggled to breathe, bleeding on the driveway. The day I helped lift her into the car and drove my friend and her cherished pup to the animal hospital to try to save her. The day that we cried and sobbed together because of someone else's careless mistake. A driver going too fast in a neighborhood filled with children and pets. The day that can never be done over. This is what flashes through my mind as I head to the path, praying to find my boy there, and not  in the road.

As I reached the beginning of the path, I didn't see him. And my heart sank. Oh my god. How will I ever find him? 

But I had been gazing straight ahead with my eyes focused on their house. And just then, I scanned slightly downward to where my little boy was. His shirt blending in with the leaves, not a sound did he make. He was just standing there. Not a care in the world. Looking at me like, "what's going on?" My little man who is always in his own world. He had no idea how worried we were. And he was completely unaware that we were looking for him. He never responded to his name, never made a sound. 

As relief streaked through my body, I scooped him up and held him tight. My baby. He was okay. He was safe. Right there on the path. 

I screamed to everybody else, "I have him! I found him!" Cradling him like a baby, I raced up the hill to Prince Charming and Little Miss. As my spastic cries started choking out, the bus arrived to take Little Miss and her friend to school. 

The look on her face as she rushed off to her bus with her friends wrenched my heart. She hadn't yet come down from the panic. And now she was headed off to school. Thank goodness teachers are so caring and loving. For I know that her teacher will comfort her and ease her mind just like I would have, had we had another moment with her before school.

I think I lost a few years off my life today. But I'm so very thankful that Miracle Man and Chub-Chub are alright; and that we have a happy ending to our story. 

I guess door alarms don't work too well on storm doors when the front door is open to watch for the bus!

Thanks for reading,

A Much Older Marathon Momma

Top 10 Reasons Why My Kids' Bedtime is AWESOME!

Now, don't get me wrong.  I love my children dearly .  I love to spend time with them, cuddle with them, read with them, and sing with them.  I love playing with them, being silly with them, and taking care of them.  But there is nothing, no  nothing , as exciting as when the clock turns to the bedtime hour!  In fact, all throughout the bedtime routine, I      hold.my.breath     in anticipation for when my sweet kiddles will lay their heads down and fall fast asleep (because that is EXACTLY what happens!   EVERY.     SINGLE.     TIME.  Ha !   Yeah  Right ! )  While I do enjoy their love and companionship, I am all too happy for the day to be over and bedtime to begin.  Here are the reasons why I think bedtime is...AWESOME:
   
10.  A sleeping child is one who cannot find a box of cereal and pour it all over the floor.  During those precious 10-11 hours, there will be NO Cheerios s.m.u.s.h.e.d. into the carpet, no Kix rolling around on top of the furniture.  There will not be any  empty bags carelessly thrown next to the giant pile of what used  to be a brand  new  box  of many future breakfasts.  And there certainly will not  be a trail of cereal left from the kitchen, through the living room, and all the way up to the front door.  It just can't  happen while they slumber!

  9.  Their sweet, angelic  faces look so relaxed and innocent.  They show absolutely no  resemblance to the screeching, screaming banshees that ran around temper-tantruming, refusing to have their diapers changed, their teeth brushed, and their pajamas put on...only moments  beforehand.  Seeing those precious visages completely unencumbered by s.t.r.e.s.s., angst, or she-devil expressions makes my heart melt  again and reminds me of how much I love them.  It also reminds me that they really  are  members of the human species.

8.  Somehow, in the quietude of children fast asleep, there are no arguments, shouts, or cries for, "Mooooommmmmmmmeeeeeeeee! He's looking at meeeeeeee!"  or  "Mommmmmmmaaaaaaaaaa!  Get him ooooouuuuut of my rooooooooommmmm!"  It's nothing short of a miracle.

7.  A child who is dreaming, cannot possibly talk back, whine, or  complain  about ANYTHING.  Which means that I will not hear about how terrible I am for forgetting to NOT  cut the peanut butter and jelly sandwich (despite the fact that all other sandwiches require cutting).  Nor will I hear any teeny pipsqueak voice whining because I asked them to clean their room...for the bazillionth time...in the span of 20 minutes.  And I certainly won't have to endure screams of, "Me no LIKE that!"  upon being served a meal that was specifically requested by that child.

6.  Anyone who has children (especially young children) can agree that when they are asleep, one might finally get a chance to THINK, since all of the c.o.m.m.o.t.i.o.n has finally died down.  Now, that doesn't necessarily mean that you will, or that your brain has the capacity to actually  process  anything any more.  Merely, it means that should you choose to attempt  to think about something, you would finally have the peace and quiet to be able to do so.  (If you are not ready to collapse in a heap of exhaustion, that is.)  Good luck with that.  Still, the peace and quiet is definitely something to look forward to! 

5.  The dogs and cats can rest without  being on hyper-alert.  No tails are being yanked, no ears being pulled, and nobody  is climbing on top of them.  Which also means, that I  do not have to repeatedly remind the children, "Be gentle.  Don't pull the doggie's tail!  Doggie doesn't like when you climb on him!  Do you hear him growling?  That means he does not want you to poke him with that fork!" Nope, with the kiddles fast asleep, our beloved pets are safe from the torture of our three kiddles.  And I, for one, am relieved for them.

 

4.   When all of my children are actually  asleep, it is not necessary for me to repeat my mantra, "Poopy is not playdough.  Poopy is not playdough.  Poopy is not playdough.  Poopy is not playdough!"  Because sleeping kids...truly    sleeping    kids...do not  take their diapers off.  They do not  play with their poop.  They do not s m e a r it all  over  their cribs.  They do not use it as body paint.  And they do not stuff  it inside of toys!  Nor do sleeping children walk up to me with a handful of number two and report, "Pooooppppeeeeeee, Momma!"   "Yes, dear.  I can see that."            It's a fact.  Sleeping  children do not play with their poop.

3.  Snack time.  Every once in a while, I get myself a special treat or snack food that I do  not  intend to share.  Bedtime is the perfect time to indulge in my sweet or savory treat.........without  the jealous eyes or drooling mouths of my loves desperately begging for some from me.  At this point in the day, I don't have to sneak off into another room in hopes of...not  getting  caught .  I can sit right in the living room, on my comfy, cozy couch and savor each bite (or sip).  I don't have to worry that the c.r.i.n.k.l.e of the package will send the greedy vultures out on a desperate  hunt, in search of that telltale sound of junk food. It's all mine ! Mine! Mine!  None for you!   Ha.Ha.Ha.

2.  There is no "Super Why," "Cars," or "Chuck" playing on repeat.repeat.repeat.repeat.repeat on the TV.  Being able to watch a grown-up  television show by myself, without interruption is Amazing!  I won't hear, "Momma, drink please." or "Momma, eeeeaaaat-eeeeaaat!" There is no, "But IIIIIIIIII don't waaaaannnnnnnnaaaaa waaaaatch thaaaaaat!"        And Bonus:  I also don't have to listen to silly, but catchy  kids songs that I won't be able to get.out.of.my.head for 2 hours! Yippeee! 

 1.  And here's my number one reason why bedtime is so AWESOME:  Bedtime means that sometime soon, in the wee hours of the middle of the night, one (or all) of my kiddles will come in for their midnight snuggles.  Because they need  me  and they love  me .  And that is a precious gift.  Even if I don't wake up when they come in, I know they are there.  (Reason number one is that I am constantly being awoken by a firm kick in the head or an elbow jab in my leg.)  But, too (and two), I can feel  their presence and I feel their warmth.  And the best part is that I will wake up next to my little loves, knowing  that I am the center of their universe...if only for a moment.

Well, there you have it, my latest Top 10!  What's your favorite part of your kids' bedtime?  Feel free to leave a comment below!

Wishing it were bedtime now,

Marathon Momma

Stickers for Dinner

It was a regular old evening here in our house tonight.  The kids were running around screaming and demanding snacks while I was making" dinner". Then Miracle Man came up to me, holding a big brown nugget of poop, at which point Chub-Chub saw the poop and decided he needed to use the potty...as in RIGHT NOW! In between the stirring of the would-be dinner of microwaved eggs, the potty assisting, butt wiping, diaper changing, and washing hands eight times, the phone was ringing. And of course it was a call I had to take. 

When the phone call was finished, the boys' bowels were empty, the diapers were back on, and the hands were cleaned of any fecal matter (eeeewwwww...gross!!), we finally sat down to eat.  Chub-Chub began gobbling up his portion right away, hungry and happy to be eating.  Little Miss decided she didn't want to.even.try.the.gross.eggs.  (To which I politely  responded that she will eat them now or go to bed hungry).  And Miracle Man nibbled one bite, lost complete interest, and began throwing the eggs on the floor.  Yeah, I'd say pretty much a typical evening.

Sitting next to Miracle Man, I attempted the usual spoon-feeding, which of course didn't work.  He was having absolutely no part in eating those eggs, refusing to even open his mouth.  I tried something new, though.  I said to all three kids (of course it was mostly directed at Little Miss and Miracle Man---although I knew he wouldn't "get it", so essentially it was a challenge to Little Miss), "Whoever eats their eggs first gets a prize!"

Well, Little Miss embraced the challenge and practically sucked the eggs up like a vacuum! (That's my favorite appliance, remember?)  As soon as her last morsel was devoured, she immediately requested her prize and I sent her to the prize drawer.  She returned to her seat with a page of stickers...something that instantly  caught the attention of Miracle Man, who looooovvveeesssss stickers!  And then it hit me...that epiphany that I needed right at that moment: 

"Miracle Man, would you like a sticker?"
"Yeah."
"Okay, if you eat your eggs, you can have a sticker!"
"Yeah."

I spooned the eggs into his mouth.  And the little stinker ATE them!!! I had to keep promising the sticker for each bite, but I was able to feed him quite a bit of what was on his plate!  It was a huge breakthrough!

It may be only a temporary solution.  But it may not be.  Either way, I will take it!  And if it does work over the long-haul, we will be stocking up on stickers!!!

Relieved at the moment,

Marathon Momma

Momma Bear and The Sensory Kid

Miracle Man has always had sensitivities and "quirks". For instance, the textures and temperatures of foods affect whether or not he will eat them.  He refuses to eat chunky or chewy foods, but likes softer textures.  So, I can get him to eat hummus and guacamole (I know, right?!?!), but I have a hard time getting him to eat avocados, beans, or apples.  He will eat smooth yogurt (even plain greek), but if it has real fruit in it, he won't even let it get past his lips.  If one smidgen of chunky food gets in his mouth, he spits it.  Right. Back. Out.

When he was much younger, I could not vacuum the living room or turn on any appliance that sounded anywhere near  as loud as a vacuum.  If I did, he would start shrieking and screaming his head off. It scared him to death! So I used to vacuum around his sleeping schedule. Luckily, most of the time...if he was sound  asleep...he would continue snoring away and I  would be able to get the crumbs and dog hair off the floor.

It could get tricky, though, on days when I needed to vacuum several times throughout the day...instead of only  during naptime. You see, we had this rug that seemed to magnetically or cosmically attract every.single.speck  of dust in the entire  house, plus the neighbor's house. Tragically, it used to need to be vacuumed sometimes up to three times a day! With Miracle Man's sensitivities, if I needed to vacuum while he was awake, I felt like I was      tOrTuRiNg      him.  He would scream and cry hysterically, and it was extremely difficult to soothe him. Typically, when he was upset like that, he wouldn't calm down for at least an hour.  So, as a busy mom already strapped for time, sometimes I had to choose between keeping the rug clean of debris and the meltdowns that ensued, or letting go of the mess and keeping Miracle Man feeling "safe".

As the vacuum-phobia-screaming thing continued, it also escalated.  There came a point that whenever Miracle Man even saw  the scary-loud-sucking-up-apparatus, he would fffrrrreeeeeaaaaakkkkkk out...before I even turned it on!! We needed to find a solution so that I could vacuum with Miracle Man around.

So, with the help of his therapists, we tried to desensitize him to the sights and sounds of this machine that I , for one , am in complete awe of.  I must digress here for a moment because this is a topic that I think about all.the.time...I absolutely love vacuuming!  Well, not the actual lugging around, sweating, hard work part of it.  But, I am always fascinated by how AMAZING that invention is!  I mean, whoever came up with that thing is like my BFF for life!  I marvel at its awesomeness whenever I plug it in and begin sucking up dust, cheerios, powdered sugar, cat fur, cat puke, crazy loom bands.  Ooooo!  I love ,  and I mean LOVE vacuuming up those !  It gives me this twisted sense of satisfaction to just...zooooppp them up!  Gone!  No longer all over the floor!  Hehehehe!  (insert evil grin here)  You simply cannot deny that the vacuum is totally AWESOME! 

Anyway, back on topic...so to desensitize Miracle Man, we would have him in one room with the therapist and me in another room with the vacuum.  We would start by telling him that I was going to turn the vacuum on and then gradually bring him closer to me.  Each time a therapist was here, we would work on this, getting closer and closer to me, and then finally bringing him into the room where the vacuum was. In the beginning, we also would cover his ears when necessary. Over time, we would have successes, and then failures. But for the most part, the desensitizing worked. I was once  again  able to turn on my fav machine and go to town on those dust bunnies, dried up pieces of scrambled eggs, bits of pizza crust, Lego pieces (sacrilegious, I know), you name it!

We were so successful, in fact, that for quite a while now, Miracle Man has been able to handle the sounds of things like the vacuum or the blender like a champ, especially if I preset him (tell him ahead of time that I'm turning it on). I usually also preface it with a countdown of three so that he knows exactly when the noise will begin.  But our success was so profound, I could even vacuum right.next.to.him! 

Over the past month and a half, though, he is having a tougher time with his sensory processing. He is back to screaming and shrieking when the vacuum is on.  And it seems like every day, Miracle Man is having a harder time with noises. He has begun covering his ears for every loud sound he can hear, like the garbage truck going by while he is outside.  And while he is covering his ears, he is telling us, "Loud.  Loud.  Loud." 

Too, we just got a door alarm for the house because we're worried about the kiddles finally escaping to find a better set of parents. Naturally, whenever the alarm goes off, Miracle Man covers his ears and says, "Horn. Horn. Horn." It takes him several minutes after the "horn" is done before he stops covering his ears and he can move past the disturbance. His hearing (or his processing of what he hears) has gotten incredibly sensitive! 

On Father's Day weekend, we tried bringing the whole family to the fireworks.  Big Mistake.  Big. Although we had anticipated some  anxiety, we weren't completely prepared for his reaction.  He shrieked and screamed so badly that it was clear to us he was being Harmed.  We kept trying to move away from the blasts of beauty to find a better place to be; a place where he couldn't see the lights.  We ducked behind a tractor trailer next to the midway of the town fair we were at.  He continued to scream, and he looked...Terrified!  We covered his ears and moved still further back. Now, you should know that when Miracle Man has a seizure, his eyes get all funny-looking and his pupils dilate.  His eyes just look so...different . It makes him look like a different child. Well, at the fireworks that night, he started to get "that look" all over his eyes. We were very nervous, and he was so distraught, that we ended up heading to the car.

Safely inside the car, the booms and bangs were muffled, and the lights were hidden from view.  Miracle Man began to settle down a bit, but he was still fretting.  It was very scary to see him like that. And even though I had anticipated him having a hard time, I didn't expect him to freak out quite so badly.  My nerves were shot.  Momma Bear had had that fight or flight reflex.  It took a long time for the adrenaline coursing through my body to subside.  I have since decided that we need to get him a pair of those sound-deafening ear muffs.  We will probably also use sunglasses when there is so much visual stimuli in the future, as well.  But, man!  Times they are a changing for our family!

So, the next day, we were headed to a car show and Prince Charming wanted to wash our car before going there. We brought it into one of those automated car washes, and within seconds, Miracle Man was having the same expression on his face and that same shrieking-screaming-I'm-terrified reaction. It was so bad that I had to get out of my seat and climb into the back seat with him where I could cover his eyes and his ears to block all of the sensory stimulation. Again, he had that same "look" in his eyes that he gets during a seizure.  And again, there was a very worried momma.  Naturally, once we exited the car wash, he calmed down.  It took quite a bit longer than that for his momma to calm down~especially since it was the second day in a row! ;)

It seems these episodes are becoming more and more frequent.  For example, we recently went out to an old-time ice cream shop. There was a painfully long wait with the kiddles, and then it was finally our turn to be seated.  The waitress brought us over to our table and above our table was a fan. The way the fan was positioned, it broke up the light on the table that was coming from the lamp next to the fan. This setup created a strobe light effect and, once again, Miracle Man started to "freak out".  I thought he might have a seizure.  Luckily, I spoke with the couple who had been seated next to us at the same time.  I briefly explained the situation and they had no problem at all changing tables with us. We were very  grateful  to them!  We were able to sit and relax a while. And we definitely enjoyed our marvel-licious ice creams from the safety of our new booth!

Now, it's not just his hearing that has become super-sensitive.  So has his sight.  The lights in our house that didn't use to bother him at all, for instance, suddenly do. One morning we laid him down on the living room floor to change his diaper, and the light overhead was bugging him.  He was starting to get upset to the point where we had to turn off the light to complete the diaper exchange.  There have been several other "insignificant" moments where Miracle Man has reacted to lights lately. But none of them interesting enough to continue this paragraph. So this paragraph is done.  The End.  (I feel like a second grader. Lol)

I have always felt like I've been on hyper alert with Miracle Man. But lately, it seems like I have to be much more aware of sounds and lights and things that could upset him. That also means that bringing him to things like the movies is not likely to happen anytime in the near future. As I said earlier, I will probably be getting the noise-deafening ear muffs sometime soon, but in the meantime, I have to be very vigilant about what he is exposed to that might set him into a panic.  I am also anxiously awaiting a return phone call from his neurologist to see if he has any more input for us.  Until then, I am Momma Bear and I wait in the forest...watching from afar (but not too far), allowing him to navigate his world with some independence, but ready to attack those lights and sounds at a moment's notice!  RoAr! 

Yours from the Forest of Mommyhood,

Marathon Momma

Paperwork and Other Things

If you don't want to read my wallowing in self-pity, then skip over this post.  Because the reality is that today is a bad day.  Actually, if I am being honest, it has been a difficult several months.  I am constantly overwhelmed and exhausted.  There never seems to be much of a break from the stress.  Being a mom of a child with special needs is far more tiring than I would have ever expected.  It is all-encompassing, from the physical to the mental to the emotional.  And that doesn't even take into account my other two lovely cherubs.  And, unfortunately, I am not super human.  I do not have the time, strength, and energy all  the  time  to do  everything that needs to be done for Miracle Man, immediately when it is required.  I try to do my best each day and tackle several different tasks beyond the daily cooking, cleaning, caring for the children.  But I am only human.  And there are only so many hours in a day.  And I only have so much strength and energy.

Miracle Man has been going through a lot of medical testing.  Too much to blog about individually.  I just don't have the time to go back and write up quirky or sentimental posts about each of his experiences over the past few months.  So I have decided that I am not going to try.  This time in our lives is just too crazy busy.

In addition to all of the medical testing (still hoping for the answers that are difficult to come by), we just recently made the transition from Early Intervention to Preschool Special Education.  I have to say that I am in shock at how involved it is to transition, and how many stacks of paperwork have to be completed.  And, although he began in his new preschool program yesterday, there is STILL more paperwork to fill out.  There is so much, I actually have to ration it out over the course of this coming week just to accomplish it.  And I am the only person who can do it.  But what if I don't want to fill out ANOTHER social history????  This is the third one in less than a month.  And social histories are about a gazillion pages long...and they are not fill-in-the-blanks or multiple choice questions, people.  They are essays.  Pages and pages of essays. To tell everyone in the entire universe EVERYTHING there is to know about my sweet little guy.  All of his medical history.  All of the goals we wish to accomplish.  All of our concerns about him (that one is an enormous list).  All of his likes/dislikes/relationships/reactions to stimuli/waking times/sleep times/eye blinking times.  Okay, so that last one is a bit of an exaggeration.  But, really, that is how it feels.  And to have to write it all over and over is "over" whelming.  Naturally, I do it.  And I complete it carefully and thoroughly.  But I wonder why they can't just make it easier on parents of special needs kids. Parents who are already physically, mentally, and emotionally drained.  Parents who are strapped for time, but still want the best for their child.  You know, like why isn't there just one universal social history form that gets copied and passed around to each school and agency????  I don't know.  Maybe I am just too intelligent for the system?  Haha.

Mountains of paperwork.  Always.  That's the stage we are in.  As if the transition paperwork weren't enough, we recently received a provisional qualification of disability from the state.  Which means...guess what?!?!  More paperwork.  Yup.  I could swim in a sea of paperwork and tasks right now.  Just for Miracle Man.  It is fabulous that we received this letter of qualification.  Truly it is.  It will help us access many different programs that are intended to make our lives somewhat easier.  But there's the whole "red tape" thing that gets in the way a bit.  Calling programs, filling out applications, researching the resources.  It.is.all.too.much.  I need a secretary.  Heck, I need two secretaries!  And it really is no joke.  I am actually holding off on looking into all of those programs until the preschool transition is completed and the last bit of paperwork is handed in and off  my desk!

And then there is the emotional toll of transitioning to preschool.  Spending a year, or two years, or more working with therapists who come into your home to help and love your child is wonderful.  It is a connection that you make that feels like family.  The therapists help you and your child with their whole  being .  And you come to rely on their expertise in making decisions for your child.  But more importantly, you begin to rely on their friendship and the sense that you are "in this together".  And then, 2 years later, your child transitions to preschool, and BAM!  No more.  The connections, the extended "family" you have made together are severed.  Maybe not so drastically or completely (gotta love Facebook for that).  But still.  It will not be the same.  It is unnerving.  It is sad.  It is hard.

Aside from Miracle Man's Mount Everest of paperwork, I have just enrolled Chub-Chub in a nursery school program for two days a week.  This means even more  paperwork.  Having Chub-Chub attend nursery school will be so great for him.  He will get to play with other children.  He will learn.  He will experience new things and new people.  And he will be at Miracle Man's school, too!  They are in separate programs and classrooms, but they will get to see each other on the playground, which is something I am very pleased about.  Yesterday, I was told that Chub-Chub went right over to Miracle Man and gave him a hug and rubbed his head.  So sweet!   Of course, we are currently going through a very rough bout of separation anxiety on Chub-Chub's part.  And yesterday's drop-off at nursery school was no walk in the park.  It was more like a frantic sprint in a dark alley with a gang of thugs following closely behind.  But, Chub-Chub being in school will help me out.  I will eventually get a much-needed break from my lovely kiddles, once everyone settles in and I have crossed all t's and dotted all i's.  And maybe I will even find some "me" time.  For now, though, it's a transition.  And more...paperwork.

Then there is me.  Somehow I fit into this equation, too, right?!  And right now I am going through some very difficult decisions and transitions.  My health has taken a turn for the worse.  I struggle daily with the pain and the fatigue of fibro, but lately, because of where my pain is and the intensity of it, my doc believes that my scleroderma may be progressing.  She also gave me the results of my most recent pulmonary function test and there is decreased functioning in my lungs.  She is tweaking my meds and therapies and we are hoping for the best.  But she is also keeping me out of work longer.  For at least a year.  And I am struggling with coming to grips with that.  I don't know when or if I will be able to go back to work.  I miss it terribly.  I miss the students.  I miss having my own group of sweet children to educate and nurture.  I miss studying fun topics with the kids, and going into more depth because they are fascinated by what we are learning about.  I miss being silly and having fun with the children.  I miss my colleagues.  I miss being part of the building; the camaraderie, the support.  And now I have also been told that my job has been moved to a different building.  Which means that I will most likely never again work with the people I knew and cared about.  And I will have to clean out my classroom.  It feels final.  Even if it isn't.  It feels  that way.  All of the hard work and effort I put into my education and my classroom has to continue to be put on hold.  And that is very sad.  And scary.

I know there is a light at the end of the tunnel.  And I can sort of see it up ahead in the distance.  But the tunnel is dark. And long.  And I am crawling through it.  One knee at a time.  Right now, I am feeling very emotional and fragile.  And I am relying on anybody and everybody who offers kind words or actions of support.  It is what feeds my soul and helps me keep going, even if just for another minute.  Respectfully, I am not looking for any advice on how to handle any of this, no matter how well-intentioned it is.  I can and will  figure it all out.  I just needed to vent...and I did warn you ahead of time.  I am having a low point and it is a bad day. :(

Sorry to be a downer,

Marathon Momma

An MRI...Or Not An MRI? That is the Question!

After the unsuccessful attempt at a sleep study in early January, we were rescheduled for another one.  This one would be just a couple of weeks later in the hope that Miracle Man would be more accepting and tolerant of being all hooked up.  I preferred rescheduling sooner, rather than later, thinking that if the first attempt was recent enough to the second one, perhaps he would remember, "Hey!  I did this before!"  Then maybe, just  maybe , we would make it through the second one?

In the meantime, Miracle Man had had an MRI scheduled for the end of January and that had been scheduled for several weeks already.  Now, in my world, the age-old cliché "when it rains, it pours," seems to be the standard for how our schedule goes.  Well, low and behold, the new sleep study was scheduled for the day after Miracle Man's upcoming MRI.  Of course.

No big deal, though.  I just go with the motions.  Keep on keepin' on!  So the MRI was our next BIG adventure.  When an adult has an MRI, it can be challenging for them, depending on their ability to deal with the close proximity of the walls to their body and their threshold for managing the strange noises that come from the machine.  But I will tell you, it is definitely much easier  for most adults to have an MRI than a 2 year old.

Now, don't get me wrong...I have had a couple of MRIs, myself, and I tend to be one of those    claustrophobes    that panics before...and during the test.  I was lucky to have one of my closest friends drive me to my last one, though.  And this was especially helpful to me because it meant that my doc could prescribe something for me to help me relax enough to complete the test.  So, as an adult who has a difficult time sliding into the DREADED TUBE, I completely understand how difficult it would be for a small child.  Naturally, then, when the pediatric neurologist informed me that my son would need to be sedated for the test, I was completely on board. 

The plan was to use an anesthesia that would require him not to eat or drink past a specific time.  I knew that would be difficult for Miracle Man, and so I carefully planned out every detail of his meal the evening before, as well as his sleeping and waking times so that I could make sure we followed the rules.  We needed to make it to the hospital for an 8:30 am check-in, and it was my job to make sure he didn't have ANYTHING to eat or drink! 

We were completely on schedule that morning and I had done everything I needed to do with him to make sure we were following the necessary requirements.  All rules followed to a "T"!  The only thing I had left to do was to warm up the car so that my little guy wouldn't freeze his tushy off on the way to the hospital.  I carried Miracle Man into the living room, all bundled and ready to walk out the door, and rushed out to the car.  I was out there for less than a minute!  ONE  itsy bitsy minute!

A little digression here...One thing you should know about Miracle Man is that he perseverates on things.  If I haven't said it before, it is one of his "quirks".  He will find some specific activity that he enjoys and he will repeat it incessantly.  There is literally NOTHING I can do to stop him from doing whatever that activity is--believe me, I have tried EVERYTHING !

So, in every single room in our house, there is one particular thing he does over, and over, and over again,     every.single.time     he is in that room.  There is some type of connection for him in each room.  I cannot explain it.  I don't fully understand why.  All I know is that he obsesses over these particular things.  For example, in our living room, he is obsessed with turning the XBOX on and off, on and off, on and off.  Every time he enters the living room...even to this day, he turns the XBOX on and off.  All day long.  (Unfortunately, our TV stand does not have a place to hide the XBOX from him.)  In the kitchen, when Miracle Man is at the kitchen table, he throws his food on the ground.  Every meal.  Every  day .  Ever since he has been eating table food.  No matter what course of action I take.  It never changes.  EVER. 

Miracle Man's perseveration even happens outside of our home, too.  When we visit different people's homes, for example, he immediately gravitates to that one thing in each room of their home that he is obsessed with.  When we visit one of my closest friend's, he walks in the door and walks right over to their TV and turns it on and off, on and off...you get the picture.  Yes, Miracle Man loooooooves electronics!  Anything that makes noise and lights up...instant gratification at its best!

Okay, so you get the perseveration, right?  What does that have to do with the MRI, you ask?  Well...do you remember when I said that I went outside to warm up the car for less  than  one  minute ?  And do you remember the very STRICT rules of NO FOOD and NO DRINK...that I carefully followed to a "T"?  I am sure at this point you have guessed what happened...you just need the details to complete the picture in your mind...so here they are:

I walked back into the house to get Miracle Man and head to our long-awaited MRI...only to find my obsessive-compulsive little toddler shoving a fistful  of cat food in his mouth.  Uuuuuuuugh!!!  Are you kidding me?!?!?!  What the heck do I do now????  I only had to MOVE MOUNTAINS again  for this appointment to work out as scheduled! That's all. No big deal (insert heavy sarcasm here).

So, cat/dog food is just one of those things that Miracle Man perseverates on.  Any time he is near cat food, dog food, or the water dishes, he simply must eat the food and play in the water.  He cannot  stop himself.  And I have tried like only a      bazillion-and-one     times to change that behavior.  But it just is part of who he is.  For now, at least. 

Unsure what to do next, and not knowing if and how much he may have ingested, I was in a pickle.  It was too late to call and cancel the appointment.  And...there was always... what if they would  take him into the MRI?  I packed him into the car and headed to the hospital. 

We arrived at the hospital on-time and checked-in.  He was all registered and waiting when the nurse came over to me to discuss the details of the steps we would be taking during the MRI.  At this point, I informed her about the morning's CAT FOOD EVENT.  And, naturally , they wouldn't take Miracle Man in for the MRI once they heard that he had "eaten".  Miracle Man's MRI was immediately rescheduled and we were sent home.  Now, if you're keeping score, that would be 2 failed tests in a row...in a matter of about 2 weeks.  And 2 major  juggling acts of children and schedules...that were somewhat fruitless efforts in terms of getting the answers that we need about our son.  Bummer!

It was definitely frustrating...but it also ended up being a really good thing...because I had some ultra  important  personal business to take care of...that I wouldn't have been able to do, had we had the MRI after all.  Instead of dwelling on the fact that we didn't accomplish the MRI, I left the hospital that morning thinking about how funny life is...how some seemingly  difficult circumstances can actually turn out to be for the best.  To this day, I thank God that Miracle Man ate that handful of cat food.  Having the time to take care of what I needed to that day ended up making a huge difference in my life!

Of course...we still needed our MRI...and the second sleep study...but that would come the very.next.day.  And that, ladies and gentlemen, will be the subject of my next post!

Oh, and by the way, the first thing I did that week when I had a moment to go to the store was to buy another baby gate and install it on the entryway to the laundry room.  Cat food, dog food, and water dishes are now permanently in the laundry room...Problem solved!  (Except when I forget to latch the gate and the little devil sneaks in there before I notice!)  I may not be able to change him, but I can definitely change what he is allowed access to!


Wishing you sunshine and rainbows,

Marathon Momma