31w

And now we have the 3 up front and another number with it.  Yay! :)  31 down, less than 9 to go.  It's crazy to think that in 8 and a half weeks, this little guy will (fingers crossed) be making his entrance into the world.  I thought it was crazy yesterday to really have the "2 calendar months" to go, and looking at my ticker, for some reason "63 days to go" seems really short!  It seems like we were swept away by this only yesterday and now we are heading into the final stretch... Over 75% of the way to the end.  Wow, wow, wow...

31 week belly

Everyone I see these days tells me that my belly has really popped out... again.  It's weird.  Especially as I look back over belly pictures and I see it.  I mean- geeze... You'd think there was a person in there or something! ;)

We see a lot of movement these days.  Michael loves to move and his elbows, feet, hands, and butt are very visible, especially if my belly is bare.  He responds to Peter's, Bobby's, and Maya's voices.  And he loves to be "played" with when he's awake: if you run your hand across my stomach, he'll kick in reply or if you leave your hand there, he'll curl up underneath.  We may have another silly monkey or snuggle muffin (or both!) on our hands!

I rang in 31 weeks by, you guessed it, mowing the lawn again!  The grass grows and has to be done, so it's kind of neat to count the weeks of the third trimester by mowing grass.  Poor Peter better get used to doing it at some point, though, because the first few postpartum weeks I'm not going anywhere near that mower, self-propelled or not!  But, for now, I don't mind it and I love the fresh air (even when it is humid).  I remember dreaming of being able to just sit outside for a few minutes when I was pregnant with Bobby and Maya.  I watched the spring and summer go by from the window and what I wouldn't have given for some fresh air (and not just what blew in from the open window).  Being able to be out and active in it is such an awesome thing.

I've found a way to sleep comfortably and sort-of on my back!  I'm a back sleeper and side sleeping just doesn't really cut it for me.  The couch has been my go-to place because I can prop myself up and sort of be on my back, but I finally figured out how to maneuver my body pillow and spare pillows so that my head/neck are supported and my hips and lower back are supported, keeping the weight off my back, while simultaneously laying semi-flat.  It's WONDERFUL.  I've actually been able to sleep in our bed the entire night!  Yippee!!

And, we've rescheduled our maternity pictures.  The rain knocked us out, but with the holiday on Monday, we'll be able to reattempt them! :)  I can't wait to see how they turn out.

So, all in all, the calendar is getting shorter and Michael will be here before we know it.  Crazy to think about, and even crazier that this time, we may actually do things on schedule!

Worn

Pregnancy Mentioned (and, the post is long... be forewarned)

I highly suggest popping over to Mrs. Spit's page and reading her latest post, Ruined, if you haven't already.  In discussing how losing a child ruins you (a statement she heard on the radio), she responds:  "We know because we had to make a choice. We had to come back from this. We know that life, the universe and everything may come to an end in a terrible way one day. We know that life isn’t fair, it doesn’t even out and that declaring how you would never recover is no guarantee that the fundamental inequity of the universe won’t visit you."  She goes on to say, "So please, in the middle of this horror and pain, don’t use the word ruined. Because, when they are ready, there is a group of us who will help them try and crawl out of the hole. Just like others did for us. We will sit at the edge and wait, until they hold out their hand. And then we will tell them – what we did, what worked for us... The pain doesn’t go away. It is simply balanced, more distributed. It will not always hurt like this. It won’t always seem like this... We know that the universe that broke them, that dealt with them so brutally still holds sunshine and joy. We know that the universe will wait for them, will hold out the promise of better days...We know that you can come back from this. We know that you have to."

***

I sat in the car, in my garage this morning after I dropped Bobby and Maya off at my in-laws for their weekly visit (which, I swear, they may love more than they love me... little buggers didn't even wave goodbye to me in the window today!).  A song had started as I reached the house and, although I know I've heard it before because it sounded familiar, for whatever reason, in the midst of this season of my life, the words literally drenched me and I sat there, engine off, sobbing.

I’m Tired. I’m worn. My heart is heavy from the work it takes to keep on breathing.
As this pregnancy continues and life moves on at a breakneck pace, there are moments... Moments where I just feel like I can't take a breath.  Where I feel like I'm just so tired that I want to say "F- the world" and escape to some private island. As I sit and write and mail out appeal letters to our insurance and I ponder the fact that, 2 calendar months from now, I'll be in the OR (fingers crossed) delivering the first child that I'll be able to hear screaming as he leaves the only world he knows for the scary world we all live in, I just feel overwhelmed at times.  It's not Bobby's meltdowns or Maya telling me that my ass is getting big (okay, so her exact words were "Mama, your belly and butt are getting REALLY big").  It's not even that I miss Nicholas, Sophia, and Alexander so much that the air is sucked out of me and I feel like my fingers are clawing aimlessly at dirt too loose to grab.  It's just all of it... Everything...  Sometimes taking a breath seems like the hardest thing in the world and there are times that I just don't want to.  That, if I thought I could, I would just stop... hold it in... never let it out...  Not in a morbid, I-want-to-die, sort of way.  Never like that.  But just in a if-I-could-stop-time sort of way.  There are days where I just feel worn out and tired beyond measure.  Days where I feel trapped beneath what I "should" be able to do.

Sarah has often given me the words that a therapist once told her.  There aren't "should"s in life.  There is what we can do, what makes sense to do, what our hearts want us to do.  But there isn't a should do.  Shoulds just give us the excuses to beat ourselves up over what we haven't done or what, legitimately, we cant do in the moment.  And she's right of course.  But when you hear and internalize what you should be able to do and it eats away at everything because you thought you were doing a pretty decent (if at times, half-assed) job, it starts to eek its way into your armor, finding that chink.  I have many chinks, but two of the big ones are pregnancy and parenting.

I suck at pregnancy.  I mean, I'm staring 31 weeks down (tomorrow!) but as my cervix tries (unsuccessfully!!!) to change (did you know you can actually feel that craziness when you have a TAC?) and I have moments where I have to just lay down and remind myself that, although I'm "fixed", I'm still physically "broken" with a thin loop of thread separating Michael from an early delivery, I feel that worn out, tired of the world, ready to throw in the feeling.  My heart feels heavier than Florence and the Machine. I feel the weight of what I should be doing.  I should be able to throw my kids up in the air endlessly.  I should be able to make dinner, clean up, and still have enough energy left to laugh at whatever cartoon I'm watching for the hundredth time while playing with trains (whose names I should know) and then help Peter get the kids in and out of the tub, ready for bed, storied and prayed with, and asleep.  On top of which, I should still have enough energy to catch up with my husband about his day.  Instead, of course, I usually just manage to clean up dinner and crash on the couch or, if I'm lucky, in the bed, so utterly exhausted that I can no longer stand up.  This is funny when, on the other side of reality, I'm able to go out and, before the exhaustion hits, run a few miles or mow the grass (like I'll do once this post is done).  I do take the kids to the playground or go crazy with them cooking in the kitchen (and making a mess that I'm able to clean up before Peter gets home) or watch them have a ball in the water table.  Things that would have been unimaginable in a previous pregnancy and for which I am so grateful I cannot even find words to say.  And yet, that "should"...  Those shoulds are still the things that haunt me.  Even when I'm in the final 2 months of this very blessed and very miraculous pregnancy, I am still made tiny and small and feel so worthless at times.  Because of what I "should" be able to do.

And then parenting... What another chink...  There isn't a right or wrong, there's what we do because it works in the moment.  But, at times... At times, it feels like I should just have the words "Epic Fail" printed on certain things.  I'm still feeling pretty bad for Bobby feeling sick and me not getting it, but it's not just that.  It's those moments that I cant diffuse or where I just have no idea why they are starting in the first place.  Where I wonder what type of example I set when I have no recourse but to sequester myself in the kitchen and cry.  Or when I just load the kids in the car and drive somewhere because I need to get away (and, obviously, there's no leaving them behind if I "escape" to my deserted island.)  There's no playbook and no coach to tell me what game to play.  Maya is so tenderhearted that calling her out on behavior can lead to a sobfest; not exactly ideal parenting there.  Bobby doesn't always understand why you are frustrated with him so, although you've told him a zillion times over not to dump the dredges of his (almost) empty cup on the floor, and you want to just grab him and be like "DUDE, WTF GIVES????", you don't, but it doesn't mean you don't feel it.  Or when your husband- great parent that he is- does something (or doesn't) that you'd never (or always) do and you just shake your head because all you can think is "am I the only one who gets the parenting thing" when, in reality, no one gets parenting... It's fly by the seat of your pants and doing what works for you in the moment and hoping that you don't screw up to the point that your kids, twenty years from now, look back and say "Man, I'll never do what my mom did.  That was just awful." 

Part of this comes from this fear, I suppose, of turning into that mom.  The one who really is awful and doesn't get it.  I don't know where the fear stems from (and, maybe, we all have the same one).  I had great examples growing up.  My mom was (and remains) a great mother.  But, even in talking with her, she's revealed some of the doubts of her own ability, concerns that still linger, even as I'm out of the house 15 years and have kids of my own.  So, it's normal.  But when you are in the thick of it and something goes "wrong", all you can do is question what you "should" have done... Ah, there we are... back to those "shoulds".


I’ve let my hope fail. My soul feels crushed by the weight of this world... Life just won’t let up...My prayers are wearing thin...even before the day begins
Recently, my heart has hurt even more as I look back on the last 5+ years.  As I remember the joy of growing two little lives inside of me and the utter devastation of feeling like I failed them.  How crushed I felt.  How I would have welcomed not being able to breathe and how each breath felt like some sort of cosmic joke. The first miscarriage nearly killed me, but the truth is I was young and, while I didn't believe another pregnancy could or would replace the first one, I believed I'd go on to have more children and things would be alright.  When it didn't happen, it was easy to blame myself for the miscarriage (even though, now, I realize that losses that early are a result of chromosomes and embryonic abnormalities typically and that nothing could prevent them.)  After finally having that happy, glowing, and seemingly normal pregnancy, I thought nothing could touch me.  Until it did.  Until Nicholas and then Sophia died.  I couldn't do anything to prevent it.  I could barely stave it off.  Losing Nicholas was hard enough but then, after feeling like we- and she- were fighting so hard, to lose Sophia too.  I couldn't understand.  And then, another miscarriage... and another pregnancy.  Another healthy, normal pregnancy- until...  I prayed, I hoped, I believed.  I loved Alexander beyond all measure and, holding him in my arms, when his little heart had stopped beating...  Where was the hope?  Where could it possibly be?  Another miscarriage... another twin pregnancy...  More prayers.  More hope.  Because, really? What was left?


Let me see redemption win. Let me know the struggle ends. That you can mend a heart that’s frail and torn.
I remember being asked what we would do if we lost Bobby and Maya.  I remember feeling like the story of parenting would end there.  I couldn't possibly fathom trying to actually get pregnant again, being pregnant again, or what life would be like if, after the TVC and bedrest, I still couldn't get them safely here.  I had to believe, even as the TVC struggled to hold on at 17 weeks and then failed at 20 weeks and we were put in the hospital that we'd see the light that was beckoning from the end of the tunnel... That they would be okay.  They had to be.  Every breath was a breath taken for them.  Every ounce of hope and strength was just for them.  I had nothing left.  I was completely and utterly bereft of any sense of being me and surviving beyond the fact that I had to get them here, alive, okay.  It was naïve- utterly so- to believe that 24 weeks and subsequently 27 weeks were marks in the sand to guarantee life after birth.  So many of us in this community have crossed that line and still ended up holding our children, clinging to life or lifeless.  But, there was nothing left.  I had to believe that we would make it that time...

We did.  I'm so thankful for everything that brought Bobby and Maya here safely.  I cant imagine another outcome and I don't.  I don't even try.  Their lives are the most sacred of sacreds, and to feel that I'm one of the people entrusted to care for them and who gets the enormous privilege of loving them... Well, there just aren't words.  But my heart still felt heavy... There remain questions of what else I could have done... Perhaps, what I "should" have done. 


I want to know a song can rise from the ashes of a broken life and all that’s dead inside can be reborn because I'm worn.
A mom friend of mine commented, right after we found out that Michael was a boy, that it was so great that I was going to be able to live out the life I should have had: boy/girl twins and a younger son.  She didn't say it to be hurtful or mean; she was actually quite in awe that Fate had granted me this "do over".  I've even heard (and I've even commented myself) on how the TAC was my second chance at pregnancy.  And, clearly, it is.  I wouldn't be here, belly popped out, and feeling this little guy all over the place if the TAC weren't in place.  I wouldn't be running or playing with the kids or doing anything else "normal" if not for it.  Is this my phoenix?  Is this the rising from ashes and dusting off and learning to breathe again?  Is this the entrance to another world?  Is this some sort of rebirth?

I thought, shortly after my conversation with the mom friend, and I pondered it again this morning (which led me to this post, as disjointed and long as it is), what life could have been like, without IC.  If I'd gotten pregnant with Bobby and Maya sans a history of loss and just happened to deliver them full term... and then, gotten pregnant 3 years later with Michael, carrying on in this normal way, until it was time for delivery.  I think my kids are who they are because of their genes, so I don't know that prematurity 'changed' them in that much (although, no doubt it does play a role), and I try to picture life without the loss. 

Without the loss of innocence, would I treasure every moment, regardless of how awful it may be in the second? 

Without my losses, would I have ever thought to seek out training in bereavement?  I mean, I knew (in theory more than anything else) that babies died; my uncle was stillborn and it was no secret in our family.  I know moms who've had miscarriages.  But, without the firsthand experiences, would I have ever thought to work with parents?

I'd have had to idea about groups like PAN, which is run by NICU and bedrest parents at my hospital and which I'm starting to become involved with.  I wouldn't be "qualified" if that is the right word to work with parents through F2F or any of the other organizations that I've recently been in contact with.  I wouldn't even know they existed.  I wouldn't have some of the awesome friends that I've made through- because of- our shared grief.

I wouldn't be me.  I wouldn't be writing here.  I'd be writing somewhere, I'm sure.  But it wouldn't be here, and it wouldn't be a journey through life with you.  I'd be a different me, I guess.


I want to know a song can rise from the ashes of a broken life because all that’s dead inside can be reborn, still I'm worn.
This life, this one, is the one I was meant to have.  For all the shoulds and coulds and didnts and cants.  For all the heartache and the joy and the pain and the gifts.  I didn't know it 5 years (or 10 years) ago.  I didn't think it was possible then, in the midst of the grief, that I'd ever be anything other than broken, than near-ruined.  I knew life had to go on because, without that, my children couldn't go on.  But life... rising from ashes... being reborn...  The idea was impossible.  The concept was too abstract.  And I suppose that's because it has to be.  Are we reborn?  Or do we just remake... remove and redo... rise and press forward in spite of- because of- what we've been through.  Marked by our scars but beautiful nonetheless. 

And still worn.  Worn thin like a favorite pair of faded blue jean that are soft from too much washing and with busted out, threadbare knees.  But our go-to pants nonetheless. 

Still worn. 

But still perfect.

(The italicized lyrics come from the song, Worn, by Tenth Avenue North, and from the 2012 album, The Struggle.  Written by Donehey, Owen, and Ingram; copyright Sony/ATV, 2012)

Pissed Off... Again

Originally posted here

Ugh... and so the insurance saga continues... 

In spite of covering speech for rehabilitation, blah, blah, blah, our insurance denied paying for Bobby's private weekly speech.  So, we appealed.  Well, we heard back yesterday.  Denied again. UGH!  I knew it would be appealed (I mean, let's be honest... insurance companies are all about money) and I knew we'd have to do the second appeal (which I wrote yesterday and will be mailing tomorrow), and that, most likely, we'll have to appeal to the company Peter works for (who self-funds the insurance, hence the insurance company is not required to followed the PA law that states therapeutic services for Autism must be covered).  Based on all I've heard, we have a good shot of having it covered at that point.

But...  We've stopped Bobby's therapy as we wait for this saga to play out and that kills me.  He was doing soooo well and making such strides.  And now, we wait.  And he loses that time.  And anyone who is anyone knows that the younger kids are, the better when it comes to therapy (especially therapies that work).

So, I'm pissed. I get it, I really do.  But it still just so frustrating!  I know parents who've just given up because it's too much to research, too much to fight.  And I refuse to give up until we've exhausted all measures, but still.  It just feels like it shouldn't be this hard- especially when there is so much proof to how this is working!

And I hate writing letters that say my son has a neurological disability.  I personally don't view Autism that way, although I know that it is perceived that way and that, from a scientific point of view, the current research is leading that Autism is caused by neurological damage or gene mutation or even an incorrect immunoresponse.  But I still hate it.  And I don't want Bobby to feel like there is something wrong with him.  There is nothing wrong with him... he simply struggles in a way that is different from the way others struggle.  He's still perfect and wonderful and I still love him more than life itself.

This all just makes me more pissed off!  So, here we go... The next round of appeals...

Big Girl!

Oh Miss Maya... How quickly the time passes...

Seems like yesterday, she was a tiny 2 pounder who was giving us dirty looks and trying to break out of the NICU.  Now, she is this beautiful (well, she was always beautiful), outspoken mini-me with so many traits of her dad laced through.  She's a firecracker, that is for sure.

We've tried to not force things, like potty training, on either kid.  We figured they'd get through it when they did.  So, I've done nada when it comes to night training.  I mean, I don't mind (other than paying for them!) using the pull ups at night.  I figured, once they minded, they'd tell us and boom.  We'd be done.

Well, for Maya, the time has come.  She's been trained for the day since she turned 3, and then we trained during nap over the winter, and now, as summer approaches, she decided she was done with pull ups altogether.  Yesterday morning, she informed me that she was going to wear her panties to bed.  So, we supported that and, last night, the panties went on and we reiterated that there was a nightlight in the bathroom, but that if she needed any help, all she needed to do was call for us.  Just in case, I put a spare pull up and PJs in the bathroom, but she assured me there would be no need for that and that she would go to the potty by herself because she knew how and she wasn't afraid of the dark.  Okay then!

To bed at 9... up at 6:45 this morning!  And to the potty!  No accident and Maya was THRILLED.  She just kept saying that she was a big girl.  I know... I'm both thrilled and a bit sad.  My little baby really has crossed over into childhood.  There's no denying it at this point...  So, I took out her pull ups (we didn't have a lot and I hadn't planned on ordering anymore, since it seemed like this day would be coming) and put them in Michael's upper closet.  I guess the time has come to accept that my little Maya is really my big girl Maya!

Maya with her favorite train buddies

The End is Near

Originally posted here

A year and a half ago, we toured our parish primary school and met with the preschool teacher, Miss M.  In February, we made that school our choice and filled out the application.  Soon after, we learned that Bobby's speech was severely delayed and he began therapy in advance of starting 2 morning a week preschool.  His speech and behavior began to improve, we did a lot with the social story about going to school, to get both he and Maya ready for school, and, come September, preschool came with a bang.  Bobby was evaluated by the IU, given a diagnosis, and by January, he had a one-on-one aide with him in school, which made a world of difference.  It's been an interesting school year, to say the least.

And, in 2 weeks, it's over.

I cant believe it. 

I'm actually really sad.  I love- adore- their preschool teacher.  She is amazing.  And the kids have had a BLAST.  They've learned so much.  They have grown up so much.  I cant imagine the year without everyone at school.  From their teacher to the class aides and principal and supplemental teachers (like the gym and music teachers, and librarian), to Bobby's IU therapists and aide... So much has made this huge impact on them and on us. It's like we've gained more family, we are so appreciative to these special, special folks.

My heart breaks that the school year is coming to a close, even though I know we'll be back in September!  (And, while we don't have the same relationship with the PreK teacher, it's only because she isn't their teacher... Having met and talked with her several times, she seems like a gem, too!)

The kids will be home from the second week of June through the end of the month, without any organized 'preschool'.  We'll go back to homeschool, we'll have playgroup, and we'll hit the local playgrounds as much as I can (at 33-37 weeks pregnant!), and then they will start "summer school", a three morning a week camp program.  This will run for July and August (for them) and then, they'll have 2 weeks off (and Baby Michael will be here- EEK!) before they start 5 morning PreK.  Wow... This is the next four months... Scary!  How did my babies get to be so big?

So, a special thank you and big prayers for all the teachers who play such a huge role in our little ones' lives.  Thanks for helping all of grow this first year, and for the promise of bright days to come.

30w5d

On the road towards 31 weeks...  Today, I'm 3 weeks out from where I delivered Bobby and Maya.

Emotionally, outside of the pregnancy, I'm having some rough patches.  I'll get through them, I'm sure, but they are still here and I'm still feeling it.

Physically, things seem normal from what I've read, seen, and been told. It's harder to get comfortable, my sciatica can be quite the monster, and I am bone tired to the point that, even if I'm not trying, I can lay down and fall asleep (which isn't me at all).  Red sauce gives me heartburn (sadness!) and food has started to not taste "right", which is funny, since I love food and eating! 

Michael moves all the time, which is reassuring, however, when he gets into certain spots (where he's compressing organs), man does it hurt!  There have been a few times where I've been out in public and unable to walk.  Not fun with the kids in tow!

Some of my clothes are getting tighter, which kind of sucks since I still have 9 weeks to go!  I may end up in PJs... We'll see :)  I find that it's more of me not liking the feeling of pressure against my belly, but outside of that, who the heck thought maternity low risers was a good idea?  No, people... Just say no...  On the 'tight' note, I think it's time to get some maternity panties.  I love my VS ones but they are starting to be uncomfortable because I don't like the band against my belly (and I cant stand bikini cut undies).  Looks like I'll have to venture into the mall and the Motherhood Maternity...

The weekend, as I posted, was full of sick :( and yesterday, I felt pretty lousy.  My MIL actually came over and I went to bed.  I threw up twice and my head wanted to explode. During naptime, I actually lounged around in my own bed and my MIL hung out in the living room, ready to help the kiddos should the need arise.  Bobby coughed until he woke himself, an hour and a half in, poor little guy.  He'll cough til he throws up the phlegm that's in his chest and, like me, he hates throwing up.  Makes me sad to see/hear him miserable.  :(  Hopefully, this will all pass very soon.

Well, 65 days to go until little Michael's full term arrival! :)

Mommy Fail #3,543,135

So...  Wednesday afternoon we had this and then Thursday, after school, we had this.  But, after nap on Thursday, Bobby seemed back to himself.  We went to Mr. B's and our only issue was at closing time, when he didn't want to leave and I had to go up and get him.  Which is actually normal.  (But, note to self: that 4 story climbing thing for those ten and under was not meant for a 30w pregnant woman.)  We went to our favorite pizzeria and, although we had an issue, it actually went fairly smoothly (I was just exhausted and we opted not to do minigolf and ice cream and, instead, to go home and watch a movie until Peter got home from his conference, at which point, I went to bed.)  Bobby was eating and I asked him to try something; he said no, so I said that I'd put it on his plate and he could try it later.  Well, some of the sauce touched what he was eating and he was upset.  The entire episode lasted maybe 2 minutes, but he actually self soothed himself as I calmed him down, and, while it wasn't the ease that we've had before when eating out, it could have been way worse (especially given the hour from hell we'd had before lunch).  But, all in all, went well.  Friday, he seemed back to normal.  And then, yesterday morning, we went to the Farmer's Market and, again, normal.  We all had lunch together and then I put the kids down to nap.

And, afterwards, Bobby had a 102 temperature.  And he's still sick today.

And I feel AWFUL. 

Bobby struggles with pretty nasty allergies around the season changes.  We've never had a spring one evolve into something worse, but fall to winter usually leaves him with a cold/fever combo.  On Thursday, his teacher and aide had mentioned he seemed unusually tired and lethargic, but we all wrote it off to a growth spurt because he's been eating like he's starving (they both have... out of house and home people!).  I've had to toss (for both of them) favorite clothes because they are just too small, when they were fine a month ago.  So, makes sense.

And, I had done a verbal social story (I'm still working on the written one) about school ending, which I think set him off because he doesn't process data fully that way.  I told him about school ending, vacation, summer school/camp starting, and back to school in the fall, and all he heard was "school is ending".  He didn't grasp the concept of when or that he'd go back.  (And a huge thank you to everyone's suggestions for ways to keep him "with" his teachers.  Sarah suggested he make a picture for them to remember him by (lest he feel forgotten by these folks he loves so much), I've had suggestions to get photos of all these folks with him so that he can keep them and look at them over the summer, as well as to get some video so he can still be with them.  These are great suggestions, and I really appreciate them.)  So, it's no wonder that he freaked out after the good-bye song, when he thought he was leaving for good.

But the fit at home... I think I missed the other signs that he just was starting to not feel good.  He's very much like me in that his sicknesses don't come on overnight (like they do for Maya and Peter), they usually take a couple of days.  While some of his behavior was definitely meltdown behavior (the kicking when I was trying to get him out of the car, the nonstop screaming about staying at school, etc), some of it, Peter and I both think in retrospect based on yesterday, was him trying to tell us that he was hurting and sick, and I just didn't get it, so it ballooned. 

He was scratching at his face and ears and saying "hurt" and that his skin was stretching.  He was banging his head against me and against the floor and signing "hurt" or "sick".  He would look at me and tell me he was hurting with "Mama, hurt".  And I kept thinking his heart was hurting (because of school) or that he was hurting himself because of his actions.  Not because he was hurt and was trying to stop the hurt with his actions.

I get awful migraines.  I haven't had too many since the kids were born but when I get them, I actually hit my temples to try and mitigate the one pain with the other.  And, whenever Peter or I get sinus headaches, we both talk about how much it feels like our heads are going to explode.  For a child who cant communicate functionally exactly what hurts and how much, it makes sense.  His face and sinus were hurting, so he was scratching at his face to try and stop it.  His head was hurting so he was hitting it to try and stop it, not realizing he was only making things worse.  He used the words he knew- hurt, sick, help- but the person he was talking to was seeing something completely different. 

He was asleep within minutes after lunch, and when he woke up, 2 hours later, he seemed fine.  He seemed to be more tired than usual for Friday and even on Saturday, but he was eating and sleeping fine, and was playing like normal.  He was coughing, which is usual for his allergies, but otherwise, a-ok.  Then the fever.  And then the trying to tell us and, because we got it, no meltdowns.

He would say or sign, "sick" or "hurt" or "help" and this time, we could say "Does your head hurt?", "Does your stomach hurt?", and he would nod or just lay on us, like YES! YOU GOT IT! FINALLY!  Yesterday, he spent much of the afternoon on Peter or I.  He would play when he was up to it, but then it was back to snuggles.  By dinner, he was hungry and ate... only to throw it all up and then some after.  But, even as he cried and was upset, because he was understood, he was okay.  He was comforted and we knew the problem and talked to him and, if we missed something, he would interject with a word or two or a sign to let us know that we were slightly off base.  And it was all good.  He didn't feel up to cleaning up his toys or taking a bath and just wanted his PJs and bed, no story.  But he did want to pray beforehand.  All things that, had we written this off to a tantrum, would have actually causes a breakdown because we couldn't understand his needs.

I'm grateful for ASL and the speech therapy he is getting, in addition to everything else, because it's giving him an outlet.  Sometimes (most times, actually), it isn't Bobby that is the issue- it's me (or Peter) not understanding what he is desperate to say.  And, like I said, part of the issue on Thursday was very much a meltdown because of his neurological state; but I think a fair amount was that he was starting to feel sick, wanted me to get that, and I was so blinded by being hit out of left field with the breakdown that I just missed every single marker and thing he was trying to tell me. 

I feel so sad for him.  I know how much he wanted me to help him (because of how much he is telling me now) and how I missed the mark.  When I told him I was sorry last night and that I just didn't understand, he pulled me into this huge hug and said "Mommy's here... so much."  It's his repeating of me telling him that I'm here and that I love him so much.  It broke (and melted) my heart.

Well, I've promised Miss Maya a girl's morning and lunch because she has been SUCH a huge helper during the last few days, and I want to snuggle with my Bobby before M and I head out to church.  But thank you a million times over for your prayers for all of us and your wonderful suggestions (as well as putting me in contact with other parents you know who have ASD kiddos).  You guys are awesome. :)

30w1d

All is still well :)  I swear this week is the "I cant stop eating" week.  I just want to eat every single thing in sight.  My current fave?  Those sweet and salty granola bars.... mmmm....

Well, we've decided on our babymoon plans! I am SUPER excited about this little holiday away with Peter as June gets closer.  We initially thought we'd drive up to Bethlehem for the day and go to the summer winemakers dinner at our favorite winery (no wine for me of course) , then an overnight at a B&B. The next morning after breakfast, we'd head up for the best bagels in the world (according to Peter) in New York, spend the day in the City, and then have dinner at my favorite restaurant, Pure Food and Wine (it's raw/vegan and WONDERFUL).   We never heard back from the winery about selling a ticket to a non-drinker, so we opted for a change in plan!

We plan to drive to NJ and spend most of the day at our spot on the shore (Spring Lake- it's perfection!), B&B there, then do our New York trip the following day.  Things we've discussed to do in New York (because I'll be, like 36 weeks pregnant at that point! WOO!) were a Broadway matinee or a Circle Line Cruise (which I've always wanted to do).  So, regardless what we do, it will be a fun babymoon/birthdays (I'm June, he's August)/anniversary (one more month til  we hit 15y!) trip. 

Best of all, Aunt Sarah and Uita agreed to babysit the munchkins for the night, so they will have a blast too!  For our anniversary trip (which was an overnight to the winery), the kids had so much fun they didn't want us to come home!  I have no doubt that this trip would elicit the same feelings. :) 

It's just 2 days and 1 night, but it's amazing how much things like that help you to reset with your partner.  I'm really happy we have such a support network that allows us to do little things like this!

Double Header

Originally posted here


If I don't blog, I'm going to cry.  Seriously.

After yesterday's half-hour meltdown, I was really hoping it was just something out of the blue.  Now, I'm not so sure and that terrifies me because I don't know what to do or where to go from here. This morning, Bobby seemed fine.  While Peter showered, I talked to he and Maya with the words for the social story I'm working on about the school year ending and their going to summer camp 3 mornings a week.  No issues.  Breakfast was fine, leaving the house and school drop off was fine.  Then I get a text from his PCA, telling me that Bobby was having a bit of a struggle.  We write off some of the behavior to a growth spurt (he's eating like nuts, lengthening out and not really gaining weight, and I've had to toss some of his clothes because he's grown out of them, so this is possible.).  I get to the pick-up line and it's time for the kids to come out.  The door opens and I'm waiting... and screaming... and wailing... and what is going on?

Poor Miss M is carrying Bobby and he's freaking out.  Screaming, trying to smack her, pulling her hair.  She's a trooper because she's just carrying him and trying to soothe him.  I get to them and she's worried he'll kick my belly or hurt me and even offers to carry him to the car.  I take him, thinking I can help him.  Mistake.  He's more angry and upset.  Screaming, hitting, carrying on.  It's actually quite terrifying because I have no idea what happened- and neither do they.  He was fine until the goodbye song ended and then, BOOM!  The class aide helped Maya to the car, the PreK teacher had to hold the door open, and their teacher carried Bobby.  I finally get him in the car, trying to talk to him, and he's begging for his teacher, his PCA, and school, over and over again.  He keeps telling me to leave, that he doesn't want me there, and that he wants to stay at school.  (As his teacher said, this is huge considering he didn't want to be left at school in September.)  It starts to make sense that the social story is setting in and he's realizing that school is going to be over soon; he just doesn't realize that it isn't over today.  That part isn't sinking in, and he's not happy about it.  (His teacher thinks we just have to keep going with the story, several times a day, since he needs the time to adjust.  She's right but man, this is going to suck.)

He cries, screams, kicks my chair, hits himself- you name it- the entire way home, until I turn.  At this point, I think he believes I'm going to take him back to school because he calms down and keeps repeating his teacher's name, his aide's name, and school. But he's calm.  Until we turn and go towards our street.  Again, freak out.  He's freaking out so much that, by the time we get in the garage, poor Maya is so upset she doesn't know what to do.  By the time I finally get him inside, she's crying that she's scared and then, by accident because he's just flailing and she's trying to get close to him, he kicks her in the arm (I'm holding him) so now she's really crying.

I have to put him in the living room floor, where he's banging his head, kicking, etc, so I can check on her (and the living room is carpeted, so I figure it's better than the other floors).  I finally get her calmed enough to go back to him, where he's freaking out still.  He delivers two good kicks to me, and I start contracting.  Not good.  But there's nothing else I can do.  I cant let him hurt himself and at the same time, the only way I can try to do that is by holding onto him.  That eventually seems to work, I turn on his favorite cartoon, and start lunch.  That buys me maybe 5 minutes.

Then rinse and repeat.  Screaming, crying, he wants school, etc.  He's trying to scratch off his own face (no kidding), hurling himself against walls and against me.  I'm trying to hold him and he alternates between wanting that and hugging me tightly and then trying to fight me.  It's a waking nightmare.  He looks at me and sees me and is begging for help and then he looks at me and it's blank and like something else has taken over his little body.  I eventually get lunch on the table by 1 o'clock and, finally, get him to sit... and he eats... and is calm.  Thank God.  Washing his hands, potty time, etc, is a full blown nightmare again, but then he gets into my arms and is ready for nap.  Which is where he is now, for the last half hour.

Part of me feels so bad for the teachers; they are such a gift, but seriously, no teacher (no matter how awesome) deserves to have her 3 year old student slap at her and pull her hair.  She's great because she understands there is no malicious intent and that he's upset and trying to communicate, but still... And those parents in the pick up line.  What they must think of Bobby... what they must think of me, as this kid is slapping my face and pulling my hair and fighting me like a banshee gone wild...  It was in full view of the first half dozen cars and I'm sure whoever didn't see, heard the screaming and wondered what was going down.

But Oh My God.  And I mean that in a prayerful sense.  What the hell is going on?  I feel better because I think, after talking to his teacher, that it is the social story that is setting him off and that he's upset about the school year ending, but this is insane.  I thought his 2 year old battles were rough- he's 10 times stronger now and I'm pregnant.  I can physically not handle trying to hold him down and stop him from hurting himself.  And my heart is just breaking.  I know he's upset and I cant help him.  It is awful. 

Tonight, Peter has the end of a conference and wont be home until bedtime.  I had planned to take the kids out to their favorite climbing area, then for pizza and minigolf and ice cream.... And now I'm absolutely terrified to take him anywhere because what if he has another meltdown?  What if I cant handle him, and we're out? 

I just want to cry.  I wish there was some way I could help him.

Rough Day

originally posted here

One of my best friends has a young son with sensory processing and was recently diagnosed ADHD.  We were texting the other day and she said that she wished she just knew what kicked off a bad day so that she could somehow mitigate it (or, I'll add, just be prepared for it).  How I get that sentiment.  Amidst the working through issues at school or getting services or etc, etc, that comes along with a child who is atypical, you then have these things that explode and you have no choice but to be along for the ride.

And when the ride sucks?  Well, it sucks and there is not a damn thing you can do about it.

When Bobby and Maya were two, I'd estimate that we had episodes like the one I'm about to recount every other day (and sometimes daily).  So much of it revolved, I think (and I thought then) around his lack of ability to communicate.  He couldn't "tell" me what was wrong, so he had a physical tell instead. It didn't make it easier to handle but, at the end of the day, I could at least say "This happened because he couldn't tell me what was wrong", even though I still didn't know what was wrong.  The episodes would last anywhere from 5 minutes to an hour and I would be exhausted by the time they ended.  If they were longer ones, Maya would be upset because, as a 2 year old, she had no idea what was going on and was scared.  As she got older, she would try to intervene and "help" him and, since Bobby was so far off by that point, he'd lash out at her, and she would just cry and cry because she wanted to help and he didn't want her to.  Heartbreaking.

As Bobby's language and social skills have improved, these instances have decreased.  He still has tantrums and blow ups (he's still 3 and, in so many ways, that is normal), but the all out breakdown, where I have to restrain him... I actually cant remember the last time that happened.  Until yesterday.

I know there are possible reasons why yesterday went to hell in a handbag.  They visited their grandparents in the morning, prepared to stay all day (under the assumption they would take their naps there).  I had my OB appointment at 1.  When I was done, I had a text to check in with my MIL and I rang her; the kids weren't napping and she was exhausted (she's still recovering from knee surgery in February), so I offered to pick the kids up, which she accepted.  They weren't happy to see me (it was around 3, and they wanted their "full day" with their grandparents).  I ended up having to fireman carry Bobby to the car, where he kicked and screamed the entire way, calming down when his grandpa gave him a snack to have on the way home.  When we got home, where it was clear they were both ready to crash, I got them to bed and, by 3:30, they were sleeping.  I knew I'd have to wake them by 5, which would cut their normal 2h+ nap short, but sleeping longer than that would be a disaster for the night.

At 4:30, Bobby woke up crying.  Not normal.  You could tell he was upset because he was still tired.  When I went in, he leapt into my arms and tried to go back to sleep.  Maya woke up but wanted more time, so I told her she could rest for another half hour and I took Bobby to the living room, where he snuggled on me and dozed until 5.  Holding him, I got Maya up, and carried them both to the living room, where I got them a snack and they watched Bob the Builder, a favorite. 

And then... CRASH.

When it was over at 5:15, the afternoon went downhill and fast.  For half an hour, it was pure insanity.  Screaming, banging his head on the floor, slapping himself, slapping at me, trying to headbutt me, crying... Unable to express himself or tell me what was wrong.  I'd get him calm for 15 seconds and then BOOM! Again.  Explosion.  It was A.W.F.U.L.  I ended up having to get him on the floor, wrapping my body around his, and just trying to mitigate the damage he could do.  By half an hour in, he just relaxed and everything seemed fine.  Back to normal.

I was trashed.  I couldn't help it, but I just went to the kitchen out of sight and slumped down, tears coming out silently.  Bobby wandered in and seemed unaware of what had just happened.  He called out to me, told me he loved me "so much", and gave me a giant hug.  He was back to his happy-go-lucky self.  And I had (and still have) no idea why we were back to a year+ ago.

I tell myself that yesterday was an off day because of how the afternoon played out and the lack of  good nap.  But, at going on 4 years old, we've had days that are different.  Take, going on vacation for instance... that was a totally different day with a tiny nap (one of the naps, either to VA or back, his nap was only like 45 minutes!), and he didn't melt down like that.

I know from talking to other parents that things like this are par for the course.  But when you have so many good days and average days and even "typical" days, situations like this just blow you out of the water.