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}