Love and Loathe

This photo... while a simple x-ray to you, speaks volumes to me. 
It is an image I both love and loathe.
It is Gracie's spine and was taken on March 19th, 2015.

I love it because it is possible. 
Five years ago (and all the years before that), no one would have believed that this x-ray of Gracie's spine (and more) would be possible.  Five years ago, she was clinging to life, battling four rounds of septic shock in a matter of five months.  Five years ago, the doctors told us (more than once) to prepare for the worst.  That her little body couldn't take much more.  Five years ago, I sat at Gracie's bedside and though I begged her to fight, I also gave her permission to stop.  Actually, if I am being totally honest, I also begged her to stop because it felt so selfish to beg her to fight.  I prayed (though I don't really know to who or how) to let her rest, to take her if that meant that the constant pain, sickness and suffering would go away.  If you don't understand how I could think that about my own child, I don't really care.  You haven't walked in my shoes and you sure as heck haven't walked in hers.  Until your child has coded (on multiple occasions over several years), until you've left the room to simply go to the bathroom and come back to find a crash cart and eleven people working on her, until you've been told to expect the worst time and time again, until you've read and signed DNR paperwork, you can't possibly understand where we were five years ago... or nine years ago... or nearly twelve years ago.  But, that's another post on its own... back to why I love this image.  I love it because it is possible. 

I love it because it shows, in all her glory, how bionic Gracie is. 
She is totally bionic (and she'll be more bionic soon).  Don't be jealous that you're not bionic... she earned this multi-million dollar, one of a kind body.  She fought harder than anyone I know to keep that bionic body.  But in this image, you can see evidence of battle wounds, equipment, hardware... the whole shebang is there, not covered by anything.  The only thing you can't see here are the dozens of scars... and the scars are a lot harder to look at than her x-ray image... the inside is just cool and super bionic.  My daughter is badass. 

I love it because it shows her perfect little child-sized muffin top.
Gracie has fought hard for every pound and every inch of growth her entire life.  I have counted every calorie and every milliliter of hydration that has entered her body since the day she was born.   Just two and a half years ago she was 29 pounds.  Today, she is a healthy 52+ pounds (and counting).  She is growing and gaining and that is nothing short of a miracle.  The amount of tears shed over her feeding issues could solve the drought in California... the number of times she begged (and still does) not to eat, the GI issues, the central nervous system issues, the autonomic issues... the list is long and dense.  Those little rolls of chub are a medal - - a badge of honor.  And they are an insurance policy... they represent the extra weight she needs to be able to put up her next big fight.  And that, I am sad to say, brings me to all the reasons I loathe this image.

I loathe this image because it shows the imperfection in Gracie's spine... the imperfection that must now be repaired. 
It shows her scoliosis.  It shows her hip rotation.  It shows evidence of her kyphosis.  It shows what still needs to be fixed.  The curve, while bad, isn't as bad as many.  But what these conditions are doing to her heart and lungs and general well-being are, without question, bad. The damage that has been done cannot be undone by straightening her out (she won't ever be totally straight).  What we do, by straightening her spine - - fusing it with hardware and keeping it permanently straight (and making Gracie more bionic) - - is prevent further deterioration.  We stop additional damage to vital organs and nerves. We give her body the best chance possible to continue this epic fight it has so valiantly, so tirelessly, fought. 

She needs this surgery.  We've known that since she was a baby.  It's not news.  We've been prolonging this for quite some time.  Two years ago her new surgeon (whom we've now grown to really love and respect) recommended we do it that summer.  We asked for some time to let her grow, feel as well as she can (by Gracie's standards, of course), gain some weight... just time.  He, of course, had to go by our decision, as it is ultimately ours.  But he did so while expressing that if the curve progresses, the damage does, too.  Our decision was the right one.  She has gained a ton of weight, has grown a few inches, and, until just six months ago, her back remained fairly stable.  But in the last six months there's been change.  I knew it before I saw the x-ray.  I could see it in her posture.  The time has come.  And I am terrified. 

I loathe this image because it brings to the surface every emotion I've been suppressing regarding this surgery.  Until last Thursday, I was able to tuck those emotions into a compartment called "not today."  My "not today" section is rather large, but it is also useful.  It allows me to be in survival mode when needed, dealing with only the things I have to "today" and leaving the rest to reside safely there until I have time to stress over them, worry about them, harp over them, be angry about them... whatever the case may be.  It's where I stick the crap I don't need to worry about at that given moment.  It's how I stay (somewhat) sane.  I cannot suppress this anymore. This has permanently come out of my "not today" compartment and is screaming loud and clear at me every waking moment.  And surgery won't be until September... it gives us plenty of time to do all the pre-op clearances (and there are many, after all, you don't become bionic and badass without seeing a whole team of specialists) and give Gracie her summer to be in the swimming pool as much as possible.  But, even with six months to go, these emotions are out of that safe compartment and I am terrified on so many levels.

How do we make her understand that she will go in feeling "fine" and come out miserable for weeks, even months, on end?  How do we help her comprehend the gravity of the facts - - that she will spend approximately two weeks in the PICU, she will be on pain medication for another six weeks, she will be forced to wear a brace, she won't be able to go to school, she will need rigorous physical therapy?  We can't.  Not fully.  She won't understand and that just breaks my heart.

How do we subject her to the numerous risks... so many... too many... too grim... to list here.  I can't wrap my head around any of it.  I can't bear to think of the what-ifs.  But, we also can't bear to think of the what-ifs if she doesn't have the surgery.  It is all terrifying and I loathe it.

But the thing that terrifies me the most, is the potential psychological ramifications for Gracie.  She has a way of moving her body, of exercising, of just "being" that is very specific.  We call a lot of what she does "Gracie Yoga."  Her little "bionic" body might not be able to walk independently, but she sure can do some truly amazing things with it.   Her core, even with all the new, extra padding around her middle, is stronger than mine... and dare I say, yours!  (If I was smarter, I would spend 30 minutes a day copying what she does... I could make an ab workout podcast and become an internet sensation!)  Often, the way she moves her body, provides her comfort, stability and the proprioceptive input she so badly needs given all her other sensory deficits.  Her way of moving and positioning is the very thing that she can do to self-soothe. But, all this positioning and work that she does will be impossible once she has the surgery.  I will say it again... "Gracie Yoga" will no longer be possible once she has her spine surgery.  While she is the most resilient person I know and the most strong-willed, taking that power and comfort from her and replacing it with, what will be for a while, unbearable discomfort and total lack of knowledge of her own body, sounds barbaric and brutal - - because it is. 

There is nothing John nor I can do to prepare her for that.  There is nothing we can do to prepare ourselves for that.  We can't know what anything will look like on the other side of this surgery.   My "not today" compartment has been ripped open and too much stuff came flying out. I am terrified to my very core... and that, I loathe.

The Gracie Update

It’s time for some serious catch-up on all things Miss Gracie. To set the record straight, it has not been my intent to exclude her from updates here. In fact, I have so many partially started posts sitting in blogger, that it’s shameful! The problem is, Gracie’s updates require a great deal of explanation and, well, truth be told, gathering my thoughts and getting them put to paper (or screen) has been very difficult the last several months. The move (so much surrounding that should be its own post!) and taking care of three kids (two of whom rely on me completely for everything) have made the more thought-full blog posts take a back seat. I’ve just been too overwhelmed with the day-to-day - - we are busy living!  

All dressed... and finally somewhere to go!
Gracie was super excited on her first day of school! (I was a nervous wreck!)

I’ll start with the best news… Gracie finally started school on Tuesday, September 18^th… after over five months total out of the classroom.   We weren't sure what she could handle after so long out of school (but for a couple of visits to her new class while we waited to find nursing).  In true Gracie fashion, she was gang-busters for her first day and when I stopped by the class just before picking Preston up (they are on the same campus!!!), they told me she was fine to stay the last full hour.  She was signing, responding to questions and involved in the day.  I walked out of the room with tears in my eyes.  Happy tears.  Relieved tears.

My quick snapshot of Gracie Girl before we wheeled her into class.
 I didn't want to make a big fuss, but still tried to capture her... It's not the best picture, but the moment was big and I wouldn't be me if I didn't try to capture it!

Before she could start school here, we had to establish private nursing at home  (and that nurse would attend school with her).  Accomplishing that task proved to be (just as I figured it would) quite difficult.  We don't exactly live in the most convenient community as far as commuting goes.  (That being said, we are finding that, even though this is a small community east of Mt. Diablo that was comprised mostly of orchards and farmland only two decades ago, it is proving to be very "special needs" friendly in many ways.)  Because of our location, we met only four nurses over the course of two months… one of whom basically admitted liking dogs more than kids (and was 30 minutes late and sans bra … and that wasn’t a good thing!) and another who, though super nice, would likely be relocating in six months.  Then we met Girlie, Gracie’s new nurse.  She worked a full week before we had Gracie start school and has now been with us a month.  Girlie has taken a definite interest in learning to sign the basics with Gracie and Gracie seems to like her.  (Because of the timing of our "modified year-round" schedule, Gracie has only had 8 days in the classroom - - the first two weeks of October are the fall break. I look forward to Gracie getting back into the real groove of school this coming Monday.  And, if I am being totally honest, I am just plain looking forward to both of the big kids going back to school!) 

I haven’t met Gracie's entire school team, but obviously know her teacher and aide… both of whom I adore.  Everyone within the district and county has made a huge effort to get Gracie into the classroom as fast as possible and has gone the extra mile to make her transition happy and seamless.  Thus far, the communication with me has been fantastic and the classroom has an open door policy, so I can drop in whenever to check out how things are going.  So far, so good.

As many of you know from communication outside the blog, we pulled Gracie out of school in April.  The details will not be posted here… at least not for now.  Suffice it to say, we take her education and school experience seriously and pulling her out of her program was not a hasty decision, but the circumstances surrounding (what turned out to be) her last day required quick action on our part.  As we searched for new placement and subsequently found what looked to be a great school, we learned that John was to be transferred back to Northern California.  It seemed unfair to start Gracie in a new program in late May, have her attend for a few weeks of the regular school year and only two weeks of the extended school year before moving her 369 miles to start all over again.  More than any of us, Gracie was facing so much change in such a short time.   Her world had been full of goodbyes… some explained prior to them happening (like losing her long-time Occupational Therapist when she moved away in January) and some just happened.  Even though we felt she was better off not returning to her school placement, she lost her familiar routine and the people in it, including all of her peers.  With the move, she lost the familiarity of our friends, our neighborhood, our home, her wonderful nurse (tireless advocate, friend, park pal, playmate), Pearl, her great therapy family and her doctors (some of whom we adored).  Everything turned on a dime for Gracie and, unlike the move in late 2008, she didn’t handle it all that well.



Gracie cruising on her favorite trike during her last day of Physical Therapy before the move.
Behind her is the wonderful Director of that therapy unit, Kristen, and her beloved, dedicated PT, Laural.
We both miss our old therapy family so much!

 

Miss G working the stairs with Pearl and the top motivating her with toys and Laural helping her press on.

 

With Kelsey, her sweet as pie Occupational Therapist

With Laural... whom we not only loved as Gracie's PT, but also as a friend

The goodbyes were so hard for me - - not just because of my own feelings about leaving - - but because as Gracie’s mom, I knew that her world was in the process of literally tilting on its axis and I had no guaranteed way of helping her fully understand it or protect her from what she would feel as a result.  Our decision to move was family based… not Gracie-based.  That is, while we naturally must consider all of Gracie’s specific and particular needs first, we must consider the fact that we are a family unit and decisions like a big, life altering move must consider Gracie, but not only Gracie.  There were a lot of tears shed on my part… for all of us.  But the biggest ones have come since the move, wondering when and how things would start to settle for her… and inside those tears was (is) a lot of guilt for disrupting her world so much.

Pearl and Gracie heading out on one of their park outings.
We miss her tons!

For over two months, she was depressed.  Her feedings, though always challenging, became more of a struggle.  Her behaviors became more challenging.  She was unmotivated to do much of anything. Granted, in the first days at the new house, she was eager to check things out, but for the most part, she just hung out, unmotivated to play or walk much.  And, because it was extremely hot most days, she didn’t even get the chance to be outside much except for first thing in the morning - - a huge change from living just a few miles from the beach.   With the exception of our immediate family, every bit of her routine and the people in it, was taken away.  She even lost therapy time because she was wait-listed for the first two and a half months after we relocated.  Between July 13^th and September 18^th, her good days could be counted on one hand. 

Thankfully, there was good in there and... we took pictures! 



Life of leisure in the pool!
The first weekend after we moved, we drove halfway back to our old house to spend the day with family.
To say that Gracie thoroughly enjoyed their new pool would be an understatement! I think if Gracie understood the concept of a wish, she'd wish for this in her own backyard!

Hanging with Daddy... one of Gracie's favorite things.

Another good thing... John is off on Sundays.  This hasn't been the case in nearly four years!
On one of John's first Sundays off, we took a long family walk, stopping for lunch and park time.  Gracie spontaneously signed "happy" and "family" while we were lunching.  That, I can assure you, made up for a lot of really rough days for me.  Gracie's simple expression refueled me on so many levels.
 

Hanging with Gavin... Gracie seems to enjoy him as much as she did Preston at that age.
I think she remembers a lot from that time, too.  She chuckles at him regularly, even from across the room and has, on more than one occasion, signed "cry" when he's fussing. 

Hanging with two of her most favorite people in the world!

I love this!  I was loading up the car and signed to Gracie, who was in a different room than Gavin, that it was time to go.  I came back inside after taking my first load of stuff to the car to find that she had not only crossed the house, but had brought him his chewy ring, and was sitting up like this in his car seat to give it to him! 

So, it hasn't been all bad... just not an overabundance of good.  The important thing is we appear to have passed that really tough space and, with the exception of getting "medically re-established" (9 specialists, a pediatrician, a dentist and several therapists...), we are on the other side of a lot of hard stuff. 

(A little "good" teaser... Remember the blue feather from last November?  There was a "blue feather" day recently - - actually, it was more than a day - - stay tuned for that cuteness!)

The Graduate

June 23rd was all about this guy...
(and all of his sweet preschool friends, of course!)

(For the record... I couldn't scan our copy of this pic because it's already packed for the move as is the scanner!
I will post a proper, non-watermarked copy later!)

My three men hanging before the festivities began

It was a BIG night... quite a production! There were performances by each class, a bible study performance and a performance both signed and sung (to "Colors of the Rainbow" from Signing Time... very familiar in this house!). The kids were all adorable!  Preston, who definitely does not have stage fright, had so much fun during each performance!

Waiting for all his friends to get on stage and the music to get queued up.

Getting ready to sign and sing "Colors of the Rainbow"

The only bummer was that I wasn't properly prepared (a total "blonde" moment!) to video during the first song and missed getting that footage which would have included him singing, playing a drum and, like the little leader he often is, kindly reminding his friend to pick up his drum!  Here is the performance I managed to capture...

Then there was dinner, a full graduation ceremony and dancing! (See... I said it was a BIG night!) During the ceremony, Preston's teacher said something about each student as they walked up to the stage. Her words (paraphrased) about Preston, "You sure know how to have a good time, but also know when it's time to get serious... that's rare in a little boy." In the copy of Curious You - On Your Way that each graduate received, she wrote, "Preston, You are such a fun loving, free spirit.  I love that about you!  I'm really going to miss you.  I know you will do great in kinder!"  All such nice things from his teacher of the last 12 months.

Our happy and proud boy!

Preston with his buddy, Butch

Preston... surrounded by girls... uh-oh!  (l-r: Clara, Preston, Lola and Natalie)
(Snagged from fb... it was hard to get the kids together for pics after the ceremony because they were all so excited to start dancing and playing with the balloons!)

With his best buddy, Jonah

We were lucky to capture this quick family shot because all Preston wanted to do was go be with his friends!
(Gracie did not attend and was much happier playing at the park and at home with Pearl!)

Having a good time "dancing" i.e. running around and playing with balloons!

We are so grateful to the directors, teachers and support staff for the guidance, love, education and nurturing they provided our boy every week for the two and a half years.  He has blossomed on every level... I will miss our preschool family, his friends and the friends I've made through him.  Preston is (granted, I am biased) a well-adjusted, confident, intelligent, charismatic and sweet boy who is definitely ready for kindergarten.   Me... well, I am not so ready!

A new aide... a new chapter

Gracie's new aide was officially hired this week. Having worked well with Gracie in the past, Robin was an ideal candidate because of her experience - - Gracie's care wasn't foreign or scary to her. (Last year she was one of her trained subsitutes and, for the five days Gracie managed to attend summer school, she was her full-time aide.) After eight straight days of her working as Gracie's aide, I can say, with absolute certainty, that she is ideal for numerous other reasons.

Robin cares deeply for Gracie - - a casual observer could easily discern that. As her mother, it's important to me that the person working so closely with my sweet girl be affectionate and loving. At the same time, it's also important that Gracie's aide not be too doting or hover over her. While she requires constant supervision and a lot of help, Gracie is not helpless. Robin has already proven herself to be loving, but firm when necessary, conscientious and an excellent communicator with me and the rest of Gracie's team. She is eager to improve her signing skills and to learn how to best work with Gracie from an instructional aide standpoint. I am so thankful (and relieved) that she applied for the job and that the district had the good sense to hire her.

One of the bigger frustrations with the whole process was the lack of open communication (once again) from the administration at the district where Gracie attends school. Thankfully, our district of residence has a wonderful team that was incredibly helpful with bridging the (rather large) communication gap caused by the administration at the district of attendance (and further complicated by three different nurses on campus during the week instead of just one). They are on Gracie's side (and thus, mine) and have, hopefully, created a plan to implement and enforce better processes with regard to communicating about Gracie's care while at school.

Thankfully, Miss Gracie had a great week at school and seems to have handled the transition rather well. At home last week, I told her that Betty Lou was all done and that she wouldn't be at school anymore. I don't think it registered. On Wednesday, knowing that Robin had been hired, Gracie's teacher gave her Betty Lou's picture and signed, "finished." Then they put her picture in Gracie's "finished" box and showed her Robin's picture, explaining that Robin was her new aide. I was told that Gracie picked up Betty Lou's picture and held it for a bit, just staring. A while later she was upset and cried for about thirty minutes. They couldn't find any reasonable explanation and concluded it had to be about Betty Lou. When Gracie stopped fussing, she grabbed Robin's face to hers and loved on her, hugging her and not letting go. I think she wanted to bond... and perhaps that was also her way of saying, "Thanks for being here for me!" So cool.


Some photo highlights of the week... (I don't dare call this "Foto Friday" for fear of failing miserably the way I did last year!)

I took the kids for haircuts and a lunch date last Saturday.
(Preston's is still shaggy, but he can see out now! Gracie was long overdue and had three inches of scraggly ends cut off.)
They were so cute with each other, I couldn't help but click away with my cell phone.

My boys working on the Jeep. Preston handed John tools and was really quite a good assistant! I'm sure I will have many pictures like this as the years go on!

UNdoing the 'Uns' - A debt of gratitude

Gracie and Betty Lou
December 2009

As it turned out, Gracie's aide's last day was Tuesday. She and I had a good talk that afternoon, including some barely held back tears. Her decision was not easy, I know, and she is doing what she needs to do at this time in her life. We only wish her the best in her next endeavor. In all, I think we both got the closure that each of us needed. And, while it's closure of a chapter at school for Gracie, Betty Lou will always have a special place in our hearts and, hopefully, our lives.

Gracie started school here in April 2009. Since then, Betty Lou has taken the utmost care of her, working as her "do-it-all" aide, serving as both a health aide and instructional aide. Needless to say, there isn't anyone on that campus who knows Gracie as well (and that fact makes me more than nervous). I can only hope that whomever takes her place (as we still haven't been properly informed of the details... a big problem for me, but not one for this post) will be able to fill Betty Lou's conscientious shoes, keep an open line of communication with me and the team and learn to read Gracie's cues quickly (no small feat). And, I can only dream that they will love each other as much as Gracie and Betty Lou do.

Gracie and Betty Lou at the Deaf & Hard of Hearing Program's performance of "The Nutcracker" this year

First day of Preschool

Today our little man started preschool!

(Yes, I know... not a very "toddler friendly" backpack! The Caillou one I ordered online was way too small for all his stuff! We are working on getting something much cooler!)

This day has been several months in the making with lots of tours at various programs, lots of disappointment (apparently my standards are high) and then, finally, with the help of another local mom, I was introduced to Preston's new school. When it was described to me, I was hopeful. When I toured with him last month, I knew it was exactly what we'd been looking for.

He was so excited this morning!

And, we were so excited for him! But when we drove away, I felt like a part of me was missing. I was nervous for him and was almost sick to my stomach with anxiety for the better part of an hour. When I called later to check on him, I was told that he cried for us for over 30 minutes about 20 minutes after we left. (Dagger, meet my mamaheart. Ouch.) I know it's normal, but it hurt and made me sad.

He had a few more emotional moments throughout the day, but for the most part, had a lot of fun. When we picked him up, I could see he had been crying recently. His eyes lit up and he squealed with excitement when he saw me, then John and then "Neener." He was really happy to see us. His teacher was wonderful and she told me how they comforted him and reassured him that we were, indeed, coming back for him. Thankfully, he said he had fun and that he was excited to go back on Friday. He chatted all the way home about his school day, his new friend "Timmy," and said he played and prayed. Soooo cute. Fingers crossed for fewer tears and more smiles on Friday!

He will attend an "odd" schedule of Tuesdays and Fridays... it is so kind of the school director to be flexible and work around therapy appointments for Gracie (thus, eliminating Preston having to attend and/or ride in the car for over three hours on those days). The other (huge!) bonus is that John is off most Tuesdays. When we got in the car after dropping Preston off this morning, it was the first time that we'd been together (with the exception of his graduation party last year, which doesn't count because he was too stressed out to be recognized!) without at least one of our children in eighteen and a half months. It was wonderful and strange all at the same time. We are looking forward to our few hours on Tuesdays so much. On Fridays, I will have some time to myself and time to get chores done around the house... with my music blasting and no guilt for having Preston watch a video while I get it all done!

My little man is in preschool... such a big boy now... sigh.

Second 1st day of Kindergarten; 1st sick day

The "Flock" has been busier than normal and I've been too tired to put together a coherent sentence, thus the lack of updates... still too tired, but feel the need to get this done or I'll never catch up.

I'll start with the good news - - Miss Gracie started school (as scheduled) a week ago today and had a fantastic day. She was (as she was in August) a rock star and handled the adjustment to a new place and new people like it had never been an issue for her!

Here are pics of her in the parking lot as I got ready to wheel her onto campus... she was so excited! (See her tongue peeking through her gap on the bottom...? Well, there is now a permanent tooth poking through her gums! BIG girl!)

She wore the same shirt that she wore on her true "1st day of Kindergarten" - - I guess you can say I am a bit superstitious! I figured that she had such a great day back in August, why not try the same shirt?! (This coming from the person who wore the same pair of jeans for every final during college. By the time I graduated, they were very well worn and had all kinds of natural rips and tears! I finally parted with them a few years a go when I realized that I didn't need to keep them - - whether I ever go back to school and take more finals, they will never fit me again!)


I think she adjusted better than I did! I stayed with her Wednesday, Thursday and on Monday to help field questions and give her new team input about all things Gracie. My purpose was to be "wallpaper" to Gracie, but observe and offer any help to her new team. She is only attending for three hours, but when we got in the car each day, I was pooped! I think I was carrying a lot of anxiety each day, hoping that she'd "show her stuff" and communicate a bit. The kids in her class are far more academically advanced than she is - - they've also been in school much longer. Nevertheless, I was feeling so much pressure for her to prove her worthiness of being in that classroom. She's so smart... but that's not obvious to anyone who is just meeting her. The pressure I was feeling was mostly self-inflicted... so it's my own fault. I am so worried that, because of her health over the years, she's missed the formative time to become a learner in the academic sense. We've done everything we could when her health has permitted, but it doesn't stop me from constantly questioning if we could have done more. That's just part of being a parent, I know... regardless of your child's health and abilities... but those feelings were very present those first days in class.


There are other kids with CHARGE in her class and in the preschool class next door. Gracie's health and development is so much more severely impacted than theirs, and though I wasn't really comparing or wishing she was different, I was sad for her. Sad for the struggles that she has faced, faces now and will always face. She does it with such happiness and grace, if you will - - so eager to learn and do new things in spite of how challenging it is - - blissfully unaware of how much easier it could be because she doesn't know any different. And yet there I was, a slight, blubbering mess (on the inside... no one at school would have known) trying to take it all in and just be happy for her that she's finally getting this opportunity that she needs and deserves.


And then, just like that, my glimpse of happiness turns again to sadness and disappointment because she is now sick... again. This Monday was so busy - - school, then cardiology, and since we didn't have time to make it all the way home, a quick trip to the mall to pick up her new tennis shoes (for those of you who know her "shoe issue," you know that tennis shoes - - and the fact that she wears them now - - are miraculous!) and finally off to an hour of OT and PT. She was such a trooper... happy and smiling. Therapy was too much for her, though, as she was exhausted by then. But she didn't get mad or cry, she just couldn't muster the energy for the work they were requiring. We had left the house at 8:00am and didn't return until 5:40pm.

She didn't sleep well that night and woke-up Tuesday with a low-grade fever. It subsided and she perked up. By evening, she was back up to 102 without Tylenol. She was up all night Tuesday coughing and did not tolerate her feeding or Pedialyte. So... today was her first sick day.

I made the calls this morning, trying not to be too devastated for her, but my heart was so heavy on Tuesday knowing that she so easily picked up something. It's normal for any child starting school or daycare to get sick... I know this... but I had (silently and secretly) hoped that for once, she could catch a break. She's going to miss tomorrow, too, given the way her secretions look. A chat with the pulmonology nurse has resulted in a prescription for Cipro... the "knock-down, drag-out" of antibiotics. This "ick" that she's been dealing with is recurrent and appears to be coming out with a vengeance each time she ends her regular cycle of inhaled antibiotics. All of this is, I'm sad to say, just another reminder of how fragile her health is... how vulnerable she is... regardless of that sweet smile on her face.

Dusty Eggs

I do not have a hang-up about my age. I do not face my birthday with dread. I do not, by any means, think I am old.

But today, when I woke-up on my 35th birthday, something in me felt slightly sadder than the day before. I don't feel any older, I don't look any older, but today, I officially have "dusty eggs." I am well aware of the fact that millions of women, many women whom I know and love, have babies well past their thirty-fifth birthday. But, these women are not me. I became a "high risk" mother the minute that Miss Gracie was born. I held my breath through my entire pregnancy with Preston because I knew, much better than I knew before I became Gracie's mommy, how easily nature can go off course and what a miracle it truly is for a healthy baby to be born. Today I woke-up in the "general" high-risk category simply because of my age (or rather, the age of my eggs) and today, I felt a twinge of unexpected sadness.

I do notice the increasing little lines around my eyes and smile, but I try to remember that I've earned them. I do have many grey (actually, white) hairs peeking through all around my hairline, but I am grateful to be blonde enough still that only I really notice them. I laugh when I meet someone whom I think I might be a "few" years older than, only to learn they've just graduated college and I've got an entire teenager on them. Usually, I am completely grateful to be past all those years and where I am now... more confident, more self-aware, less caught-up in the opinion of others. Today, though, I was keenly aware of their young eggs and mine that are, per the medical world, starting to gather cobwebs like forgotten items in a dark attic.

Perhaps what was a ticking clock yesterday sounded more like a gong today because these days it's completely terrifying to imagine adding to our family (and we'd really like to). Preston is going through a really rough (and rotten) stage - - one that's totally normal, but because Gracie is often on the receiving end of his terrible two wildness, it's really impossible to walk two feet away without worrying that he's going to pounce on her. She's too fragile and little to defend herself and often doesn't even see (or hear) him coming. Don't get me wrong... he's still so sweet and loving toward her, too. This is, my mom keeps reminding me, a phase. Nevertheless, it's impossible to imagine adding a newborn in the mix. At the same time, I feel like, "It's now, or never." I wouldn't want a huge age gap between Preston and a third child, I don't want to be too much older... tick, Tock, TICK, TOCK...

I know that my age is young. I know that despite an achy back and years of terrible sleep, I still feel relatively young. I know I am being completely dramatic and a little self-indulgent... "It's my party and I'll cry if I want to!"
I laughed a bit as I told my girlfriends today about my egg issue and admitted that I was being slightly ridiculous. My dear friend, Becky, told me as we hung-up, "Put some party hats on those dusty eggs!" Thanks, Barecca :-). I'm working on it!

Greetings From Our New Nest

I know, I know... where have we been? Well, we are finally trying to "come up for air" and emerge from the depths of moving craziness. There has been so much to do and when not trying to tackle the giant "to-do" list that keeps growing, and John's not working, we are trying to have fun and play with our kids. At the same time, and we must be crazy, we have tried to embrace the holiday spirit and have put up some modest lights on the house, hung a wreath and actually have a tree with lights. The house is lacking our traditional "Griswold" flair in that we haven't put up lights and decorations everywhere, but it's certainly a respectable effort given our current situation! The tree, however, is a sad little sight. It's got lights on the top two-thirds and no ornaments... and I still find myself saying "NO!" every other minute to both kids. Perhaps I should have forgone the tree... but I just can't give it up, no matter how sad it looks and no matter how consistent it forces me to be in my parenting. (Sometimes saying "no" and then giving consequences for repeat naughty behavior can be the most challenging part of parenting. Being consistent is so important... and so very exhausting!)

So much to catch-up on that I don't really know where to begin! (I've said that before on this blog, haven't I?!)

I guess I will start with the week of the move, itself. On the Sunday before we left, my amazing girlfriends (from college... we've been friends now for a LONG time!) took me out for a fantastic dinner. Amy, Becky and Erin... thank you so much for such a wonderful evening... one that I didn't want to end for fear that it would be the last one for a very long, much too long, time. I don't remember the last time the four of us had a "girl date" that didn't include kids! I think it was when I was pregnant with Preston...? I spent my drive there and home biting my tongue and trying not to cry, sure I'd never stop once I started. Even though we are all so busy with our own families, it has been innately comforting knowing that you are just a car ride away. Now that you're not, surely we will need each other more! I just hope that you all decide to visit... often... and together - - so we can have that kind of dinner again, soon! I miss you so much already... but I thank you for fueling me with "SMC Sisterhood Strength" before I left! I love you all so much!

It goes without saying that my mom is the only reason we actually made it out of town. While I took care of the kids and the day-to-day stuff, she did all the hard work. Never in a million years could I have packed our house alone. Never. Likewise, I couldn't have unpacked it alone. She had the kids' rooms unpacked and comfy the first night that we stayed at the house. By the time she left (the Friday after Thanksgiving) the family room and kitchen all looked like home. Thanks, Nana! You ROCK! And, thank you for taking care of so much of the logistics in getting the old house ready to rent out. I truly cannot think of ways to thank and repay you. Certainly, if I had the cash, you'd be sitting at some fancy spa resort being pampered like a movie star!

We CAN'T WAIT to see you next week! We all miss you SO much!

We've had a few little hiccups (or "comedy of errors") along the way, but nothing that can't be fixed and certainly nothing horrible. Not all of our stuff made it on the moving truck. (And, to think that I tried to purge our lives a little... but, still, too much stuff. I need to learn to be a minimalist... and so does John!) So, the moving company will be delivering our overflow next week. It's all "garage stuff" for the most part, so it hasn't been missed much yet and will just need to be organized along with the rest of the stuff that's already in our garage!

We had a huge plumbing overflow (oohhh... fun!) on the first Sunday in the house. I was madly doing laundry and the master bath toilet kept gurgling whenever the washer drained. Eventually, it overflowed. Good times! Then, John went to get some work done (again, because things that require brainpower are difficult to accomplish with the kids awake!) and stepped out the front door into a puddle of sewer... yucky. The flower bed "runneth over," down the driveway and into the street. So pretty. So I spent the rest of the day trying to get in touch with the landlord and then finally just called a plumber as it couldn't wait. Lots of roots in the line... typical of older homes. Reminds us of our first house we bought together... so there's some nostalgia in the stopped-up sewer for us. I guess that's something!

In all, the house is working out great. I have a hard time being a tenant, though, as I've never really done it before. So I keep looking at what I'd change - - how I'd redo the floors, the yard, the kitchen, the baths. And it's really hard for me to remember NOT to do that. I am very happy here, don't get me wrong. It's so nice to be with John again... even if only for five minutes a day when he's working.

The kids are really happy. Gracie took to her new room like a champ and LOVES it. She had NO problem adjusting... a miracle, really. The first night in the house, she knew exactly where to go to bang on the door with her feet and furiously sign "bath time." I was so pleased and so incredibly relieved. Preston, on the otherhand, will NOT sleep in his room unless placed there after having fallen asleep in the family room. My sweet, easy-to-bed-boy, who used to throw me kisses through the slats in his crib before he laid down and closed his eyes, now stands there screaming "NOOOOOOOO, NOOOOOOO, NOOOOOOOO!" at the top of his lungs, shaking like a leaf and sobbing. He seems genuinely terrified and will not let up the tears. He doesn't get exhausted enough to just lay down and fall asleep. ANY advice on this front is greatly appreciated. I did NOT see this one coming in any way. He used to go down for bed and naps so easily. His new room is much bigger than the old one (same with Gracie's)... perhaps that's too scary for him... a whole wall of shelves for all the toys and books. Not sure. The landlords were kind enough to let us paint the kids' rooms the same color as their old rooms to help with the transition... minus Preston's red accent wall... so things look somewhat familiar.

Advice needed, please! Oh... and should I mention that the terrible two's have set in with a vengeance... more on that, later. (I really don't think the "two's" have anything to do with the sleep issue.)

John is surviving the break-in phase. It's difficult at best and he's not really enjoying it... and that's the intention. It's called "break-in" for a reason. It's not supposed to be fun. I have to hand it to him. He's always required a lot of sleep - - and I mean A LOT! Even when I worked full-time and he worked part-time, I always had the bulk of the night shifts with Gracie because I have learned to survive on very, very little sleep. He learned how to do that a little bit better at the Academy and it seems to have stuck. So, he's balancing the work, the "home work" (all the reports and studying he still needs to do on his own time) and his family really well considering. On his days off, he is all about family time while the kids are awake - - and the kids (and I!) have been loving it! It's so nice to see his face every day! It's even nice to have the ability to be frustrated that he leaves his dirty clothes on the floor two feet from the hamper! I hoped the Academy would have fixed that... can't win 'em all! Ha!

He was on the "swing" shift to start and now has moved to "graveyard" just yesterday. Needless to say, we are all trying to adapt to his new schedule. Thank goodness he can sleep through anything! Now he just needs to figure out exactly when to sleep!

The kids and I have kept exceptionally busy during the days. We have started the marathon of doctor and therapy appointments for Gracie. Fifteen in all (I thought 13 before... but I miscounted!) and the specialists for her "major issues" (not my phrase, a nurse's at school) must all release her prior to the start of school. We can't get in to all of them this month, so she won't be able to start school until sometime in late January. Oh... then there's the school placement. I have toured two programs for her. Both are good, but for very different reasons. This, too, will have to be another post. Let's just say that John and I are weighing all the pros and cons (sites unseen for him) and trying to come up with a decision by the end of the week. I will be talking with two of Gracie's former teachers to get their input, as well.

In the meantime, here are some catch-up photos from the past month!
Let's start with the nostalgia!
On John's last weekend at the old house, we took the kids for a long walk, went to the park and then they each took a "last ride" in the swing that hung in one of our trees in the front yard. That tree was no taller than John the day we moved in. Now it's huge!
(I thought I had emotionally detached myself from the house the day I drove away, but going through these pics made me a little homesick, I must confess. Today, when the kids and I ran an errand, I drove down to the beach for a second and got over it!)

So... how cute are they?!

If you look closely, you can see Gracie signing "swing."

My Camelias were in full bloom, but nothing was as hard to leave behind as this piece of concrete that stopped time with the names of our family as it existed in 2004 when we completely re-did the backyard.

Preston thoroughly enjoys his new backyard... and so does Gracie. Neither seem to miss the old one we worked so hard for!!! :-) This is a good thing! The "things" that matter (or we let ourselves think they do) do not matter at all to the kids. They don't miss the newness of the old house, the meticulously landscaped yards, the hardwood floors (okay... maybe Miss Gracie does for scooting, but not for her traction when trying to sit up against furniture!) or the crown moulding. They just care that we are all together, they have a place to play, a place to be loved on by both their parents. They still get to have a bath every night and share the center of an Oreo (or two) when Mommy gives in. The kids know, regardless of whether they are able to intellectualize it, what really matters and remind us of that all the time!

Greetings from our new nest... our new home!

The Graduate... The Officer

CODE OF HONOR
I, a member of the California Highway Patrol, subscribe in word and deed to the following:
To serve the State of California honestly, and conscientiously; and fulfill my oath as a soldier of the law;
To uphold and maintain the honor and integrity of the California Highway Patrol;
Be loyal to my fellow officers; respect and obey my seniors in rank;
and enforce the law without fear, favor, or discrimination;
Assist those in peril or distress, and, if necessary,
lay down my life rather than swerve from the path of duty;
My personal conduct shall at all times be above reproach and I will never knowingly commit any act that will in any way bring discredit upon the California Highway Patrol or any member thereof;
To all of this I do solemnly pledge my sacred honor as an Officer of the California Highway Patrol.

Prior to the graduation ceremony, was the Commissioner's Inspection of each Cadet.

It was an opportunity for each cadet to speak individually with the Commissioner prior to graduating and taking the CHP Code of Honor. (These were taken from a great distance... so a little fuzzy.)

Following the graduation ceremony, was the badge pinning ceremony. Until very recently, it was always tradition for badges to be pinned by only family members who are active or retired officers - - it was an honor reserved only for them. Recognizing the significance of the accomplishment and the hand that supportive family members (such as spouses/significant others) have in the cadet's success, the decision was made to allow the new officer to select the person who would pin their badge.
Knowing that John has two cousins who are active officers and an uncle who is retired, I was deeply honored that he asked me to pin his badge. Without doubt, one of my proudest and most memorable moments as his wife.

John (center) with his cousin, John (left) and James (right)

I will, most likely after the move, be posting a detailed slide show of the day. We have so many great pictures... and many more to come from all of whom took pics that day! I just couldn't let another day go without paying tribute to his accomplishment!

(Don't forget... you can click on the pictures to enlarge them!)

John's Assignment - A Migration of the Flock!

Well, it's official! John has his assignment...
SOUTH LOS ANGELES
The Flock will be migrating south in November.

John did a ride along in Torrance (in what will be his office) on Saturday night and then drove home to get back to the Academy Sunday night. A whirlwind weekend for him. We were supposed to have been down there last week and over the weekend w/ John (my mom, the kids and I) to scout areas (neighborhoods, school districts, proximity to LA Children's and/or UCLA or Children's Hospital Orange County) but both of the little Swanns were sick and we couldn't travel.

Gracie narrowly missed a visit to the hospital last Sunday and Monday... her lungs sounded terrible and between the coughing and sneezing, I was constantly suctioning her trach, her mouth and her nose. Needless to say, she wasn't very fond of me for a couple of days... I was always "bugging" her. All the coughing wreaked havoc on her stomach and her gastritis flared up something terrible. She feels so much better now, thank goodness, and despite being very "junky" with her secretions, she is back to her little sassy self. I missed her!

Since Gracie was kind enough to "share" with her brother, Preston got the "ick," too, although his was mostly in his little nose - - which is now raw from Mommy wiping it all the time. Vitamin E oil works great to soothe, though, and he likes to have it rubbed on... thank goodness for small favors. He does NOT, however, like it when I use Gracie's suction to clean out his nose! It's SO worth the battle, though - - since he hasn't yet mastered the nose-blow, it's really a handy little tool to have! He also is cutting another molar and has a little fluid in one of his ears. The "great" thing was that he could tell me - he pointed to his ear and then signed & said "Ow." I immediately called the doctor and we went in to get his ear checked out... and got some pain relief drops.

I felt on the brink of getting completely nailed by the bug (as did my mom) but we managed to avoid getting the full blown flu like the kids. Now that everyone is on the mend, we are going to try and go down this week to find a place to live. I was originally thinking we wouldn't do this until after John graduates (due to the crazy timing) but with all of the logistics involved in moving (and moving Gracie, specifically), it would be easier to know where we will be landing.

So much to arrange for Miss G... medical supplies/equipment, private therapy services, school placement, home hospital instruction, a new IEP within 30 days of her placement in the district/county, a new Regional Center & caseworker, a new CCS caseworker, re-applying for CCS physical therapy, a new Medi-Cal caseworker, THIRTEEN NEW doctors and specialists... and the list goes on.

Since she just missed a week of school from being sick, I feel a bit guilty pulling her out again to go find a place to live. But when I look at that list, I realize that this is what's necessary... and if I don't make arrangements ahead of time, it will be Thanksgiving before she is placed anywhere in school... then it will be difficult to get things (especially an IEP) accomplished before the Christmas break and before you know it, it will be January. So... I am trying to get over the "pulling her out of school guilt!"

Wish us luck in our house hunt... we are picky... and since we will be keeping our house here and (hopefully) renting it out, we will be broke! NOT a good combination!!!

On the bright side (and it IS bright!!!):
We will be VERY close (perhaps even the very same neighborhood) as the Dodd family, our dear friends in CHARGE. Preston and Reuben are exactly one week apart and, I have a hunch, will be great pals! Gracie will LOVE the climate and be able to be outside more - - it won't be too cold or too hot (Goldilocks?!). I'm sure once Preston sees the beach, he will turn into a mini beach-bum! It will be an adventure... and we will make the most of it!

Odd Coincidence: John and I have always moved this time of year. We bought our first house together 10 years ago this month. We bought our current home 7 years ago this month - - the longest I've ever lived in a house. And now, we are moving again in the fall...

The "Dream Sheet"

The "Dream Sheet" is the list of available office locations and the number of positions in those offices for new officers. The cadets have a few days to put them in order of preference. If any of the locations are within 60 minutes from your home (per MapQuest), then certain other factors are considered... whether you own a home, whether you have a school age child, whether you have children of any age. We have all of these things... not to mention a few other major "considerations"... but since none of the 150 available positions (in 31 different cities) are within the 60 minute rule, it doesn't matter. We knew that this was a possibility from the start. It was part of our dozens of late-night-into-the-morning heart-to-heart talks regarding John pursuing this career path. So... for us, the "dream sheet" is really no "dream" at all. It was just a fact sheet.

For John, the placement will be based on two things: his class ranking and the last four digits of his social security number... and we'll just go on record saying that his SSN is really low and the high numbers get priority. John received the list last Monday (the 15th) and we met for dinner during his Wednesday night liberty to finalize our pickings. (We had to prioritize all 31 locations.)

We find out Monday morning (the 22nd) where he will be assigned. It's so surreal. We will know Monday where we will (likely) be moving. My (slightly) educated guess (based some info we have from more than half of the cadets in his class) is that it will be the Oakland office or somewhere in Southern California. I really don't think that any other part of the Bay Area is a possibility.

We'll see... my motto on this particular subject is... "It is what it is."

One week... two tearful goodbyes

Papa with Gracie and Preston... and part of Sophie!

Preston and his Papa

Papa with "his girl"

Gracie and Preston seem to be exchanging a knowing glance here... like something is about to change... and they are right.

On Sunday, July 6th, we bid farewell to Papa (also known as Jim!) as he prepares to head to Afghanistan for one year - - he is being reinstated in the Army after nearly 21 years of retirement. He will spend a few weeks at two different Army bases in South Carolina and Georgia before he departs at the end of July. My mom, Nana, is with him now, spending some precious time together before he leaves. We are so grateful and proud of his service... it takes great men (and women) like Jim to make our country what it is. We will all miss him terribly. I am still struggling with how to help the kids cope during this time. Both of them are so used to having Papa around and even before he left, Preston's second task every morning (after running to his sister for an attack kiss) is to grab his Daddy's picture and Papa's picture from Gracie's picture bin and run around signing and saying their names. It will be difficult to help them understand where he is, especially Gracie, but hopefully with email, phone calls and webcam we can make it a little easier for all of us.

Our second farewell was on Friday, July 11 - - Judy, Gracie's nurse of over 3 1/2 years spent her last day with us as she will be moving out of state. (I didn't post a picture because I didn't ask her if it was okay! :-)) She has been so dedicated to Gracie - - working not only as her nurse, but also as her teacher, her therapist, her advocate and so much more. She will be so greatly missed and again I am left with the struggle of helping my kids, especially Miss Gracie, cope with her absence. With the exception of vacation days, she has been here nearly every weekday for years... Preston doesn't know life without her and surely Gracie doesn't remember. It was a very difficult day - - far more difficult than I imagined. I am so sad for my girl.

There is not a prospect of a nurse to replace her ... the nurse we had lined-up and really thought was going to be great (based on her recommendations, our impression in an interview and subsequent phone calls) has completely flaked on us. There has been no communication with us or our nursing agency in over two weeks so we have to assume that she has decided not to work with Gracie and didn't have the decency or professionalism to let anyone know. Unbelievable, really, and a lesson learned... I should have had (as should have our agency) a contingency plan.

Good Luck, John!

On Monday John started his 27 weeks at the California Highway Patrol Academy.
This is a big career change and is one that was several years in the making. I am so proud of him... and equally excited for him.
Since we met (12 years ago) John has spoken of a career in this field. For various reasons, the timing wasn't right and once Gracie was born, many plans changed. We did what made the most sense for our family - - John worked part-time (to keep his fabulous union health benefits) and I worked full-time to financially support our family. It worked really well for us on many levels, and while we were always grateful for the great insurance he had and the flexibility of his employer (and mine!), John was never satisfied professionally. During the last few years, he looked into other careers that seemed interesting and appeared to be an easier transition for our family, but he always came back to law enforcement - - specifically, the CHP.
Timing is everything and interestingly enough, several things happened at once to align John's stars - - the biggest of which were that Gracie was approaching the maximum dollar amount through John's policy and he was approaching the maximum age to apply for the CHP. If Gracie's insurance was running out, then there was nothing really holding him back from making the change... so he went for it. The interview process (just to be offered a spot at the Academy) is rigorous and takes many months. It was, obviously, a big decision for our family - - one that was carefully thought out. The Academy is a 27 week, live-in, military based program. He gets "liberty" on the weekends and Wednesday evenings (not all). Luckily, the only academy training center in the state is in West Sacramento, so he's close enough to come home during those liberties (provided he doesn't have too much studying to do). Two and a half years of curriculum are squeezed into that time. It's intense to say the least. But, after all things were considered, the right decision for John and our family was for him to pursue his dreams. It's his turn... his time... and he deserves it.
So, I have stopped working full-time and my "PIC" (Partner in "Crime", Partner in Children, Partner in Chores, etc.) is GONE! I do have help... my mom and Jim are always a phone-call away (as they've always been) and Judy, Gracie's nurse, is here during the day (until she moves away in July).
And, quite fitting... as John dove in to the rigors of Academy life on Monday morning, I dove in to life without my "PIC" by driving down to Stanford to take Gracie to a GI appointment. Nana came with us and Papa stayed home to look after Preston... thank goodness for both of them!
* * * * * * * * * * * * * * * * * * * * * * * *
The photo was taken as he rushed out the door Monday.
I will be keeping a little journal of photos of John during this time... as with the intense physical training they do, I am sure that he will be morphing back into a "twenty-something" - ha!