Family Reunion

Since my sweet girl is, sadly, down for the count with yet another abdominal migraine cycle and I'm up with her suctioning a lot, I thought I'd use the time to do a little holiday catch-up on the blog.

For Thanksgiving, we took a road trip (a total of 18 hours in the car with traffic... the kids were better behaved than their parents!) to Arizona to visit my brother and his family. I couldn't post (or I guess I should say, "didn't want to post") pictures of the trip because I wanted to make photo books as Christmas presents. Now that the holidays are over, some of the amazing shots taken of our little family reunion need to have their glory here on the blog!

"The Men" captured as we walked through downtown Prescott
We had such a great time with them, and despite the fact that the dry, cold air wreaked havoc on Gracie's trach, she traveled like a champ (and was still wanting to be naked in the below freezing nights!). It was great fun seeing all four of the kids together, especially my nephew, Jackson (20 mos at the time), with Preston. They were adorable to watch - - Preston thinking he was "all that" as the older cousin and Jack looking admiringly at him. The trip was a long time coming - - we hadn't seen each other since Jack was about ten weeks old - - and I can't wait until we can visit again, soon! My dream would be for us to end up living near each other so that the kids can grow up together and pictures like these would be a regular occurrence.

My brother teased that I was like a tourist, clicking away the entire time. Now, though, I think he's super grateful I was stalking everyone like the paparazzi! I can't post them all, there are too many, but here are just some of my many favorites!

My brother, Brian, with my nephew, Jack, and me with my kids.
(My niece, Makenzie, was home that day with my sister-in-law's mom.)

Such a nice looking group of men, if I do say so!

Gracie loving on my adorable niece, Makenzie.
Gracie used to play with Preston just like that for hours on end!

Boys and Sticks... the perfect combination!


My gorgeous sister-in-law, Vanessa, with sweet Miss Mak

The kids having a blast playing in the leaves that were piled high in a courtyard outside a cafe (where I happened to have the best latte in my life!)

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

"Un"

Lately, I have been feeling very "un." No, I don't mean the French translation of "one" as if to attempt to create a new trendy word for "one" or "zen."

I mean "un" - - uninspired, unrested, uncreative, unnerved, un, un, un.

I considered not writing about it... mostly because I am feeling the deep pains of writer's block and can't seem to squeeze out my thoughts without considerable effort... but I realized that, for me, being forthright about where I am and how I'm feeling might actually help me snap out of it. And, really, if I pretend to be more than "un" right now, what point would that serve?

I could be all flowery and try to fake my way through it... sort of stage my life for the blog... house not in shambles (yeah, right), kids adorably dressed and smiling (we know 'dressed' isn't happening for Gracie, at least not inside!) in perfectly edited photos as we take on the new year with all the gusto that I want to be feeling. My kids are too intuitive for that nonsense and wouldn't put up with it, first of all. Secondly, those of you who actually read this blog (there are some, right?!) would see right through it. And, really, if the point of our blog is to remember where we (the Flock as a whole, not just the kids) were at a particular moment, then this "un-ness" of mine needs to be part of it.

It's real. It's life. It's where I am.
Whatever the cause (or causes), it's more than the typical January duldrums that are so easily felt after the letdown of the holidays, when the magic of the season has faded, the pretty lights are all being put away and what's left is a serious sugar crash (at least for me!) and a return to the regular, everyday grind.
Furthermore, it's not about a pity party. Truly.

Perhaps it's the lingering effects of the last year. Granted, things could have been a lot worse, I fully recognize that. But we spent so much time on the verge of that possibility, that I think the wounds are still fresh and haven't yet started to scar. And, if I am being honest, we've spent the better part of almost eight years teetering on the ledge with regard to Gracie's health. She's amazing, resilient and inspiring... I am only tired. (And, because she is amazing, resilient and inspiring, I feel a bit guilty for saying that I am tired.)

As I mentioned in my New Year's post, there was a whole lot of decision making in our world, too, not just surrounding Gracie, but all kinds of life "stuff" that has left me reeling. Some of it is resolved; there's still big stuff to come. I know I am feeling uneasy in anticipation for all the changes on the horizon... but until we've got things truly set and decided, it's not really blog-worthy. The point is, the state of "flux" is really unsettling for me.

I don't think that any mom can honestly say they don't get into a funk every once in a while. I'm trying not to project the way I'm feeling onto the kids, but fear I'm failing miserably. My patience is thin; my temper is short. I can hear myself as I try to reason with Preston about something that isn't really that important and realize that my tone not nearly gentle enough, my voice a little louder than it should be and then I immediately feel guilty, knowing that the way I'm interacting with him is going to translate into his interaction with someone else. I find myself having moments daily that I wish I could do over... there is a lot of guilt in that. A moment here and there is reasonable, I suppose, but I am feeling like a lazy parent lately. The television is on too much, especially on the rainy days, and I feel like I just don't have the energy to be consistent, fair, reasonable... or fun.

My "to-do" list is much too long (just like every mom), yet my focus is blurred. My ability to multi-task has turned into countless started things and no real desire to finish any of them. Some of them must be finished, urgently, yet I'm still completely unmotivated.

The recent developments at Gracie's school have left me unnerved. Her health aide since April 2009 (who actually doubles as an instructional aide, though, unfortunately, that's not distinguished or specified in the IEP) resigned the week before winter break. She didn't tell me... and still hasn't really talked to me about it, which makes me unhappy and is a whole different story. Anyway, I found out by accident... no one who should have told me actually told me. And, now, her last day is Wednesday and there is a huge list of problems surrounding this issue - - none of which I have the energy to face, though I don't have a choice.

I could go on. But, given that my writer's block has caused this to turn into a giant, rambling mess that actually does sound like a pity-party, I will stop. I hope that getting it off my chest, out through my fingers and onto the screen will somehow give me the oomph I need to get out of my "un-ness."

In the meantime, I will try to focus on the positive things... it's just a bit unclear to me at the moment where that list is. {wink}

See Ya 2010

Yes, I am still the same girl who believes in the power of yet.
Yes, I am still the same girl who believes that change and resolution can (and should) be made any hour of any day, not just at the new year.
And, tonight, I am the girl who is so incredibly glad to bid farewell to 2010.
In case you haven't been following along, 2010 was not a good year for the Flock.

Yes, we made some great memories.
Yes, there were many wonderful moments.
And, yet, I'd be stretching the truth to its very seams if I were to say that the majority of those memories and moments weren't made around awful circumstances.
We made the most of what was going on at the time - - that is what we do. We celebrated the little things because they were happening, regardless of the other ten not-so-little and not-so-good things that were also happening.

Gracie's health was poor all year - - she began the year battling endless infections and life-threatening feeding issues that literally left her emaciated, weak and desperate for nutrition. She was septic four times, twice in septic shock, had major abdominal surgery, and continues to battle those relentless infections. And somehow, because that's what she does, she rallied through it all and just keeps rallying.
(She even ended 2010 with a nearly five day stretch of an abdominal migraine that lifted just enough this evening to allow her to spend about an hour and a half with friends at a New Year's dinner party.)
Throughout the year, John and I made difficult personal decisions, financial decisions and family decisions. And, needless to say, we made excruciating decisions regarding Gracie's health, her care, her life - - we did way too much thinking, we were all tested way too much - - physically, emotionally, spiritually. I am so relieved that this is the end of 2010 and that tomorrow we will be looking at a new family calendar on our refrigerator... changing it will give me great pleasure and, what I hope is, closure to this period in our lives.

In true Swann family fashion/function, John and I divided and conquered tonight. While Preston and I stayed late with dear friends to have fun and celebrate the New Year, John took Gracie home early (he has to be up at 4:30am for work). Just moments ago, before the clock struck midnight and before I started this post, I kissed both of my sleeping children and my husband and whispered to each of them "Happy New Year... See ya 2010."

Merry Christmas!

"I'm almost four!"

This is his "If you're going to take my picture, then I won't smile" face.
When I look at this picture, though, I don't see that face as much as I see a little boy who is not-so-little anymore! Sigh. And, though he just hit the three and-a-half mark in November, he likes to tell us that he's "almost four like his friend, Adam."
All I want to do is squeeze him tight and tell him to slow down.

As most parents of three and a half year-old boys will tell you, your pride in your son's behavior can swell at one moment and tank the next. You can be so thankful that he made the good choice and then five minutes later be discussing the poor one that surely involved using a naughty word, not listening or being too aggressive. You can feel the tears sting your eyes as he shows (what you are certain must be) more compassion than any other child his age ever has and then, in the next instant, wonder who the monster is that previously was the sweetest boy on earth. While I say this in a bit of jest, it is not really all that inaccurate these days.

Taken on a very hot, static-hair sliding day in November!
I love our boy... so much. He is smart, kind-hearted, sweet, compassionate, a fierce protector and defender of his sister, a major jokester and he still loves to cuddle. He has excellent manners, gives unsolicited hugs and kisses, will tell you how much he loves you and sign it too, completely unprompted, because that's how he feels. He is social, curious, competitive and athletic. He is as busy as can be - - his desire to ride his bike, play outside with his friends and play any sport you can think of is well-matched by his desire to play with puzzles, practice writing and use the computer to play phonics games.

All of these wonderful things and so many, many more make up the little boy that John and I brought into this world... a little boy who, along with all these things, has the power to reduce me to an exasperated, frazzled parent who, in order to keep her word and remain consistent in her parenting, has literally left the park with that same son dangling from her hip, screaming (him, not me), my hair disheveled, a snack bag flung over my shoulder, a ball under that same arm and a bike being dragged by the handlebars back to the car (because, thankfully, I had the foresight to drive instead of walk to the park) all because I had to tell him for the third time (and, really, once should have been enough) that he could not climb down the super tall ladder thingie that only daddy is tall enough to reach! Ah... good times! The lack of napping (otherwise he's up until midnight) certainly hasn't helped the ability to rationalize with him in the late afternoon, either.


In all seriousness, I am amazed at the little person our son has become. He is all those wonderful things I described (and more) to his very core. He does and says the sweetest things and, at least once an hour, slays me with something so wonderful and quintessentially "Preston" that my heart nearly explodes.

One of the things he has been doing for a while is getting up from the table to walk over to John (because he usually cooks dinner), hug him and thank him for a yummy dinner. Just the other night, I walked out of the kitchen after having done the dishes (because that's usually my role) and Preston said, "Thanks for cleaning up, Mommy." So sweet. And, a reminder of how much he listens to how John and I speak to each other. I always thank him for making dinner... he always thanks me for doing the dishes. I love that Preston's character makes him care about emulating that behavior and that I can always count on a, "Bless you," from a little voice across the house when I sneeze.

Back in October (when Gracie was in the PICU with pneumonia), we had three straight days of grey skies and rain, after which, the clouds parted in the most beautiful layers right at sunset. I viewed it from a west-facing window at the hospital, where I lingered a little longer just to take it in. I later told John about it over the phone and asked if they saw it at home. John said that they were playing outside, went in to get a sweatshirt, walked back out to the driveway and Preston exclaimed, "Daddy, look at the beautiful, pink sky." I love that he, while so focused on playing, takes in and enjoys the beauty around him.

The boy loves puddles... as he should!

On his actual "half-birthday" in November, John took him to Play-it-Again Sports to buy a big boy bat. These video clips were taken on that day... they now take everything over to the baseball diamond at the park where Preston can crank a slow-pitched ball to the grass of the outfield.





He and I had our first movie date together. He's been several times, but always with Daddy or friends. We saw, "Tangled" and it was, in his words, "totally awesome, Mommy." I agree... a fabulous little movie, but my date was even better.


He likes to ruffle up his shaggy surfer-ish hair... and, quite frankly, does a pretty good job! A few weeks ago, I took the kids for a long walk around the neighborhood. Preston rode his scooter for a loop around a couple of blocks, then we traded for his bike. Next we stopped at a school playground. When he took off his helmet, he ruffled up his sweaty hair and said in the most dramatic voice, "Oh No! Mommy, we forgot to put Wacky Wax in my hair!" He cracks me up!

Daredevil
We have, lately, been hearing tidbits of ourselves disciplining him echoing back at us. It's hard not to bust a gut when it happens. For example, the other day, Preston ran into the bathroom to "do his business." He was moving so quickly that he neglected to turn on the light and, from the toilet, called to John, "Daddy, please turn on my light." John told him, "Just a minute, buddy." To which Preston said, "Now, Daddy. One... Two... Three..." Hilarious! (The counting thing is another topic, entirely. If we say "now," then why on earth are we counting after that? It's no longer "now" if we follow it up with the extension of counting... and yet, we do.)

Ah... the constant test of parenthood to my "almost four year-old" - - to be consistent, to keep a straight face and to never, ever forget that he is always listening and watching our every move.

Santa Baby!

Last weekend, we went to see Santa with our good friends and neighbors. We were all excited (and maybe a bit nervous about how it would go), but no one could have predicted how absolutely perfect our "Santa Scenario" would play out!

Gracie, for the first time ever, was dressed in a tutu... made by our dear, talented friend in CHARGE, Amy Russo. Let's just say this... I will be putting this tutu on Gracie every single chance I get!

We arrived and there wasn't a line... at all. Turns out, they were going on a break for an hour and had already turned away several people. I plead our case due to Gracie's health and Santa begged his elves to let us in. (And, for once, I didn't let myself feel guilty about the other people who had been turned away and was just so thankful for this gift of compassion from the North Pole!) Thanks, Santa! Best present ever!

This could very well be one of my most favorite pictures of all time!
Santa sat alone with Gracie for a bit - - neither Preston or Addie were inclined to sit with him alone anyway!


Preston climbed up next and Addie was very content with just standing next to Santa... and then the paparazzi took over for the next several minutes! We got so many great pictures with their camera and ours, it was hard to choose!

I love that Addie and Preston are holding hands!

Say Cheese!



This one came out blurry and I was so bummed... Preston and Addie were exchanging the cutest look as Gracie looked on! It's not so bad black & white, and, fuzzy or not, I couldn't delete it!

"What?!"

"What?" Gracie signed, as I stood near the photographer trying to get her to look at the camera and smile on picture make-up day.

Since Gracie was scheduled to get her picture taken right when I dropped her off on make-up day, I stayed to help. It was comical... my girl wanted to turn around on the little chest they have the kids sitting on. She wanted to smile but turn her head completely one way or the other - - never front and center. So, when she opened her mouth wide and signed "What?" at me (which she does often) and I heard that the photographer got it, I knew that would be the picture I chose. Turns out there were two I liked, but this one, is by far, my favorite. It is so quintessentially Gracie and makes me smile, even chuckle, when I look at it.

We continue to deal with infection type illnesses (on top of abdominal migraines) and CHOC's Infectious Disease team has been following Gracie closely. We have become regulars at the lab, going nearly every week since October for multiple vials of blood at a time. The last visit, Gracie wheeled into the room, stuck out her arm with confidence and tapped the crook of her elbow with her forefinger. She is "trooper" defined - - she even watches the whole process and is clearly more bothered by the tourniquet than the needle itself.

Thus far, we've learned enough to create more of a mystery. In October, Gracie had strep-pneumo (Streptococcus pneumoniae) which lead to her pneumonia and another ICU stay. This is something she was immunized for as a toddler. We would expect that with the recent exposure and the immunization, she'd have at least some antibody response. You or I would... at least something. But, Gracie didn't. Zero. Nada. Zip. The Infectious Disease team is puzzled and ordered more lab work to test her antibodies to everything else she has been immunized for in order to see what her responses are. From those results, we will (hopefully) come up with a plan. The expectation is that Gracie has some sort of autoimmune disorder, but if one thing is certain with her, it's to expect the unexpected. I'll post more as we learn.

Back to the good stuff... Gracie's longest stretch of "space between" has been two weeks and five days. Since the last post about the shopping carts, we've had two periods of good space and, as it turned out, that longest stretch had perfect timing. Though John took a tremendous amount of leave over the four month period when Gracie was in the hospital a total of 48 days, he still had a two week vacation slated during Thanksgiving and the week prior. We tried to get him back on the schedule for one of the weeks, not wanting to use up more of his leave in case it is really needed. Turns out, it was needed... for all the right reasons. The long "space between" for Gracie fell directly into the time John was off... and we enjoyed every bit of it. (She lost four days the first week of December due to an abdominal migraine cycle, but has been back "in the game" since Monday the 6th.)

In our true "seize the moment" mindset, we have made every effort to capitalize on the moments that truly allow us to celebrate the "space between" and, even if just briefly, forget about the space to come. Whether it's the little things - - something Gracie did at school, sweet things that Preston says, milestones reached, or the regular, day-to-day stuff that makes me smile simply because it's regular, day-to-day stuff (like the shopping cart)... or the big things (like our family trip to visit my brother and his family in Arizona for Thanksgiving), there has been much to celebrate.

In addition to her remarkable resolve at the lab (which, while sad on the one hand because she is so familiar with the process, is actually really happy in that she is tolerant, she understands and she communicated clearly), Gracie has been feisty, full of energy and making progress on all levels. She has, in recent weeks...

- started back to therapy (Occupational and Physical Therapy... twice a week each, after school. Hopefully, after the start of the year, she'll resume VitalStim.) She is working hard and though she's lost strength and stamina in some areas, she has increased in others. Her (vastly) improved nutritional status has made a tremendous positive difference, but has also caused a need for her to get reacquainted with her body, as it is 25% heavier and she is growing.

- has started doing her vest therapy in all kinds of positions... sometimes for postural drainage reasons, which is really quite smart! She also has been scooting on her bottom (more than her back), pulling herself up to stand more, requesting to stand more and cruising furniture (to the point that I'm afraid to step away!)


- wheeled herself around the Aquarium of the Pacific in Long Beach for the first time. She had a ball! She does, however, have a lot to learn about following directions (she LOVES being in control of where she goes and when, much like a toddler!) and the personal space of other people. She will just wheel herself right up to someone and wrap her legs around them or touch them if she wants to get more acquainted! Cute, but also not necessarily appropriate!


- come home with this note in her communication book...

"Hi Kristi,
Gracie worked well today. She did great in APE. Gracie caught the ball. Betty Lou (her aide) was holding her by her hips."

Do you realize, for Gracie, how much coordination that takes standing, even with someone supporting her hips? So cool!

- signed "wrong" at school when she was seated at the table with her friends for a painting activity. "Wrong" can mean that something is wrong with her, like pain. It also can mean "no." On this day (and others since), it meant that something was wrong with the situation. Gracie didn't get a paint shirt put on (because she often protests extra layers over her clothes and then wants to remove everything!) and all of her peers had theirs on. She did not stop signing "wrong" until they figured out that she just wanted a paint shirt like her friends!

- added to her bath time routine. After walking into the bathroom with hand-held assistance, she will climb the two steps of the stool, grab the counter (I will then let go of her) and she will reach over, turn on the light (perhaps several times!) sign, "light on, light off," admire herself in the mirror, brush her teeth (if I set it up for her), turn on and off the water, brush her hair, etc. SO CUTE!!! She will then, with hand-held assistance, carefully search for the step down and make her way to the tub - - all wonderful use of the vision she has and her awareness of her safety and the depth of the steps.


- really turned into a diva! Little Miss LOVES getting dolled up and especially enjoys getting her hair curled. (And, she still won't keep her clothes on! Grr!)

Shopping Cart

To the outsider looking in, these pictures might look like an ordinary family trip to Costco. And, while we regularly frequent Costco, I assure you, there was nothing ordinary about our shopping experience last Saturday. You see, our kids have never, ever sat in a shopping cart together!


I'm not sure who had more fun! While the kids were just plain silly playing with each other (Gracie especially loved playing with Preston's hair!), John and I were giddy with happiness watching them experience something others can so easily take for granted.


Although Gracie's had the core strength and balance for years to sit in a cart like this, she has always preferred being in her chair. When we've tried the cart, she has panicked and signed "up" or wanted to put her head down for stability and security. Plus, until she was about four and a half, most outings (aside from walks to the park), were terrifying for Gracie, causing a true sensory overload. Between all of those things and her poor health over the last year, there hadn't been a good opportunity to give it another shot... until Saturday. Suffice it to say that I have never enjoyed a crowded Saturday at Costco more in my life!