Finding Our Footing **Updated**

I had a whole post written out, way too long.  I added 48 pictures even (catching you all up from my iPhone upload that finally occurred after way too many months).  And then I hit publish and only half of it saved, without me realizing.  HALF! The entire bottom half about how I'm starting individual counseling in addition to our couples counseling (read on), it's gone.  My entire resolution about how it feels so necessary that I blog to document the details (for doctors, for family, for myself, for my kids), but also so that I can capture the reality of this, to maybe help someone else. I've searched all over for stories like ours, and it gives me such relief to find someone who's been in a similar boat, who's travelled this road before.  I am inspired, and I think our story can inspire some...one day.

In any case- it's gone now, the entire bottom half.  So if this seems incomplete, it's because I hate blogger and it lost my deepest emotions somewhere into the interwebs, never to be found again. Ok, overly dramatic. But still, I'm livid.  And now, the half-post:

I'm feeling less like attempting any sort of poetic description of where I am, where we are as a family right now.  I'm feeling a lot more like I just need to document these days.  One day I'll look back and be glad to have all of the information that I housed here and in our family blog.  One day I'll be disappointed that I didn't really capture the last several months- months full of so many twists and so little predictability. I really should have been jotting down a thing or two.

What I do have is a notebook filled with the scribblings of our amazing nanny- every diaper, every meal, every nap, every fever. Thank goodness for that! I also have sheets of "therapy logs"- the cutest pieces of paper that my amazing husband designed, complete with a picture of Caleb on the top surrounded by clip art of workout equipment. Our therapists jot down important notes on these, as do the nanny and our respite provider. 

It takes some serious organization, all of this. I believe most of you know my serious inadequacy in the organization realm. I so wish I could be one of those women with the meticulously thought out family calendar, the weekly meal plan jotted down by Sunday afternoon, the kid's outfits planned and placed before the very last minute frenzy of missing shoes or forgotten sippy cups holds us back from making it to the doctor's appointment in time, requiring a reschedule or an entire afternoon of sitting in a waiting room while the doctor has to "fit us in". I so wish I was a bit different in this arena.

Instead, I'm barely getting by with last minute texts to the therapists to let them know that Caleb has an appointment that morning so PT will have to be rescheduled.  It also takes a whole hell of a lot of teamwork, not just between the therapists, myself, our doctors, all of our caregivers, including my family, our nanny, our respite provider, and our friends.  It also requires incredible teamwork between my husband and I.  Keeping our lives organized is a multi-person job.  Keeping our lives happy, now that seriously takes effort.  We could get so lost in the confusion, the questions, the doubt, the denial, the monotony, the struggles, and the schedules that we completely forget to remember the life that resides in all of that. 

And this is why B and I have begun marriage counseling.  This, and the incessant reminders that parents of children with Autism have about an 85% divorce rate, according to some.  Oh, and parents of kids with special needs have about an 80% divorce rate according to some.  And parents of multiples also have an increased divorce rate too, according to some. 

According to us, it all takes work. A whole lot of work.  B and I grieve very differently.  I need to express it, I need to talk about it. I absolutely need to look at the worst case scenario, plan for it, expect it, absorb it, marinate in it, and then hope to God that it doesn't happen.  B, well, B needs to take his mind off of it. He needs to see hope in every scenario. He needs to live in this moment.  We both need to talk about it, but in very different ways.  So having our needs met by each other in that facet can be challenging.  We also have to remember who we are, who we were before the words Cerebral Palsy came into our lives. Before the formal diagnosis of Autism spun us around.  Before kids in general turned us into new people, incredibly new people.


**Thank you Stacie and Meim for your comments before I realized that half of my post was missing- You two are such amazing women, I can't even begin to share how important your support has been for me.  I wish you could see the last half...and those pictures. Ok here- I can at least make up for the lost pictures! Boo on Blogger!!!***

Playroom of our old house...aww!

She loved sitting in that box!

Heading to Nana and Papa's for Christmas dinner party (the kids are actually still rear facing, we had to put him forward facing for a bit because of some issues with our seat...but I'm getting close to pulling the plug on the rear facing, we'll see)

Dozer Doggy!

Last days in the old playroom

Mommy and Daddy went to Vegas for a weekend away! Thanks Nana and Papa!

Drunk in Vegas with the kids back home? How about some chicken noodle soup and deviled eggs at 1am...sounds about right.

The view from our Vegas bathtub! :)

Our temporary house while we searched for a new home

He loved the big window to the outside!

Caleb being tackled by the big bear in the background cracks me up...

Experimenting with new hair styles for the boo bear. She rips all of the hair ties out anyway, I don't know why I bother.

pink cow?

Love this! This has been my background on my phone for months!

Pillow party! Best friend had a yard sale and was selling a bunch of her pillows...it was the BEST!

First hair cut!!!

What are you doing back there??

Looking on with fear. We are growing her hair out, hot mess of bangs and all.

Mommy turned 30 and needed some wine (April 2013)

Mother's Day- Grace and I took Nana to Afternoon Tea at a nice resort in town. It was so cute! Three generations of ladies :)

Sick little dude :(

Gotta love those one-on-one shopping trips from time to time

Baby pool by the big pool in our new yard!

The only picture I got on our recent staycation...Sesame Street was an attempt to get little lady to cuddle and let me stay in bed.  Failed.

So Big!

They just keep growing, don't they?  They wake up in the morning and for some reason, they've grown a bit each night.  It's horrible.  And lovely, I guess.

We got our "18 month" photos back a couple of weeks ago and I just love them, but good lord these two little ones are getting so big. I'm reminded of this regularly when lifting Caleb nearly throws out my back for the thirteenth time that day, or when Grace can actually out-run me as she dashes around a corner to hide my phone...again.

It's been an interesting few weeks.  We've been battling the Early Intervention changes and I took a pretty hard stance on getting our IFSP changed after I signed it under pressure, without real agreement.  The whole team is coming back over on Tuesday to make some changes and I'll have another tough battle, I'm sure.  It shouldn't be this hard to just keep the same level of services, especially when the child receiving the services hasn't made any "improvements".  It's all budget cuts and structure changes at work, and I can't stand for that impacting my son so negatively. 

I know he's not better than the other thousands of kids needing services and probably going through similar battles. But we're HIS parents, he doesn't have anyone else, so we'll keep fighting until he gets what he needs.  At least close to what he had before.

I'm really excited that they've given us back his physical therapy plus some (he had gone months without PT because of our move and then the program changes), so he is getting PT twice per week now which is awesome (even if they claim it's only temporary)! I'm worried that this will mean he won't get OT, Speech, and DSI work as much as he needs it, though (which is what's happening now).  We have to select a new team lead because ours quit and all I care about is their schedule flexibility. If they have to come to all of the sessions, I need someone who can be here several times per week. Where could I find someone like that? It's all just a mess. I should be selecting a team lead based on what Caleb needs and how they work together, etc.

We did, however, find a respite provider! She's only been here once and she had to call us to come back home after about an hour and a half because Caleb lost it and wouldn't fall asleep with her. I'm not sure what we'll do...but I'm really hoping that B and I can get out a bit more. I'm also hoping for a little more one-on-one time for both kids, but Gracie in particular.  She's getting more and more frustrated with the therapists coming in and everyone focusing so much attention on Caleb.  She's usually really good about playing with him and then finding something else to do, but recently, she's been just grabbing whatever he's working on and darting off with it, or literally sitting on the therapist's lap to get more attention.  I feel really bad for her.  Hopefully we can get some more individual time with her by having the respite provider come and help out.

We have a big appointment this week with a developmental psychologist to determine whether Caleb is "at risk" for an Autism Spectrum Disorder. We have heard the "at risk"  term being thrown around a bit since he was first diagnosed with delays, but nothing official.  Then we started hearing other things and now I'm not sure what to think. He has "stereotypic" behaviors and "sensory seeking" behaviors, but all of it can be caused by his CCD (Corpus Callosum Disorder).  it's a weird place to be- I know that he could benefit from the diagnosis because of the habilitation that he would get, and the diagnosis wouldn't actually change anything...but I hate labels and he already has so many.  I think I can get over that label problem if he qualifies for habilitation.  He is, however, incredibly social and has fantastic eye contact.  Doesn't necessarily mean he isn't ASD, but I know it's somewhat rare.  We'll see.

Grace has had a bit of a language explosion the last week or so.  She still isn't proactively saying many words, but she will repeat everything and loves to sing her own little songs, it's adorable.  She has probably 15 words that she says regularly, only about 5 or 6 that she says without prompting.  She knows several signs and understands what we're saying, though.  I do absolutely love her songs! Today in the car, she was just singing away about ba-ba and la-la-la, ga-ga, doo-boo, fa-da-ba.  Love it.

Here are some of the pictures...  ::heart melting::

Just as a note...remember that bucket from a while ago?

7 months...couldn't even come close to getting them both in that bucket now. It was pretty cute, actually. Grace picked it up and started carrying it around.  It was a bit much for this mama to see her tiny baby carrying that big bucket. Wasn't this only yesterday?