Happiness is... a surprise parcel from a thoughtful friend

There was a knock at the door, but when I opened it, no one was there.   I looked down and found the unmistakable brown box with the smile.   Amazon.   But, what was it?   I hadn't ordered anything.  Upon opening my surprise parcel, I discovered these two items from a dear, thoughtful (and very missed) friend:

Thank you so much Tracy!  I hadn't heard of  "The Happiness Project" and now I cannot wait to enjoy each of these! 

Happiness is... Sark

I've been in a blog rut as of late (not the most immediate late, as I've managed to include a lot of pictures from the holidays and events surrounding them), but as for real updates and the deeper things, I've been, well, too busy and too tired to gather my thoughts.  I still am - - my writing is anything but cohesive lately.  Okay, my thoughts in a normal conversation are anything but cohesive lately!  I can't even walk into a room and remember why I was there half the time. (Maybe even more often than that.)  The level of fatigue I am experiencing at the end of a day (which is never Gracie's "end" of the day!) is at an all time high... taking care of my little flock is exhausting.

It is rewarding, of course.  I am blessed to be home with my kids, of course.  I am beyond honored to mother all three of them, of course. The list of those thoughts are long.  That being said, I am tired.  I am often at my wits end.  I am impatient more times than I care to admit.  I am often unsure (ah... the "Uns") about my skill level at this job (especially when my kids are testing me to my breaking point).  I continually find myself comparing my days to the movie "Groundhog Day," for I feel (as many stay-at-home parents do, I am sure) that my life is on a constantly repeating reel.  These are not complaints; they are facts. 

I am known for not making resolutions for the new year... it sort of goes against my belief that it doesn't take turning a page on the calendar for me to make a decision to change something in my life.  It can be in the middle of a random Thursday afternoon (like when I make a concentrated effort to not lose my patience... a common mid-day resolution).  And, quite frankly, if we hinge too much on that first day of the year and our ability to be successful with whatever resolutions we make and, heaven forbid, have a bad day and/or mess with that resolution on day one (like don't overeat, blah blah blah) that we kill the tone for the new year.  And, really, forgiving ourselves for missteps and moving on is a lot easier if we realize that we can make a change at any time.

I am also NOT a fan of many things about January... again, not a secret!  When the decorations come down, the excitement in the air dissipates and we are left with the bare trees and monotony of the regular day-to-day... along with the realization that as good as the two (okay, at least three) weeks of eating whatever goodies we could get our hands on not only changed the fit of our jeans, it started a trend of wanting chocolate for breakfast and cookies for a snack.  (Oh... is that just me?!)  Anyway, in trying to work through my blog rut, in attempting to ward of the "Uns" and hopefully, to help me gather my thoughts on some bigger, pressing (and certainly blog-worthy) things, I am going to (attempt) to have a second installment of the series "Joy in January: Happiness Is."

I hope I am far more successful with this than I was with "Thankful" in November!  And, perhaps actively concentrating on a piece of happiness each day will lessen the weight of everything else - - or, at the very least, make my typical mid-day resolution of being more patient a great deal easier to achieve!

So, here we go!

Happiness Is... Sark.

I love Sark.

Before we moved, I had many of her words hanging on the walls of our playroom/computer area. My favorite piece (above) was handwritten and painted by my dear friend, Hannah. Sadly, I have not yet hung them back up since our move (along with most of our family pictures). And, in light of my need to remain calm and patient and remember that my children learn from my example and feed off of my energy, I have been taking a good, long look in the mirror. And, as I've evaluated my own behavior following some not-so-fun stuff with one of my offspring, some of these words from Sark's "How to Really Love A Child," have been playing in my head over and over. It's time to hang them back up.

Thankful... that November is over

Well, it’s November 30^th and my intention to post about my thankfulness each day clearly did not go further than intent.  Complete failure to execute… at least in writing.

Actually, if I am being honest, I am very thankful that November is over.  I have looked forward to its end since darn close to the beginning of the month.  The first was a good day, but after that, there was a downward spiral and I struggled a lot to feel thankful this month.   It shouldn’t ever be hard to find things to be thankful for IF one chooses to have that perspective.  Generally, I am one to find good in every day and take a moment to feel thankful, even if only for a moment.  But, in November, I found a lot to gripe about. A lot.  (Just ask my mom… she heard most of it!) 

I was thankful, don’t get me wrong.  I am always thankful for the obvious “big ticket” things that are most important in life.  And there were fleeting moments throughout a handful of days where I felt thankful and was very conscious of my gratefulness.  On the 1^st of November, Gracie had her best day of school so far (she later trumped that “best day” near the end of the month).  On the 5^th, she pottied on the toilet for the first time ever… and it was at school.  Let me say that again... it totally bears repeating... Gracie pottied on the potty for the first time. EVER!  She has now gone a handful more times.  We've been sitting her on the toilet for years.  She loves sitting there and knows how to use the toilet paper and will even help flush.  But she'd never gone at home.  This milestone is HUGE in the world of Gracie!  But, after that day, she missed an entire week due to her nurse being ill and three additional days in the month due to her own health.  That was a bummer.   

Gavin is growing and changing at the speed of light and doing so many entirely adorable things that I can’t help but smile when I think about them.  Like his dancing - - I am so thankful that baby boy will dance the second music starts… even if it’s just one of us dropping a beat for him.  He starts grooving and I smile.  That's easy to be thankful for. 

I was super thankful for plans in the middle of the month with my sisters in CHARGE.  But then, Preston had a nasty stomach flu that caused him to miss the last day of school before Thanksgiving, and thus, miss his Thanksgiving feast.  He was so bummed.  I was bummed for him.  I was also bummed that he threw up for three days and was out of sorts for five.  And, I was less than thankful for the three times I washed every piece of linen in his bedroom… including pillows, which, incidentally, take so long to dry I could have done four more loads during that time.  Anyway, poor little dude felt 100% better by Thanksgiving.  But, by then, the wonderful weekend plans we had were blown to smithereens and, I am not going to lie, I was so disappointed (and exhausted) that I cried about it.

I was very thankful to that my mom and Jim came down on Thanksgiving and spent the day with us.  My mom cooked and John got home from work in time to enjoy dinner with us.  Then the following day, Gavin and John got sick - - the same nasty bug Preston had.  Gavin got it worse… way worse.  He narrowly missed a hospitalization this past Monday due to four days of awful stomach stuff that left him bordering on dehydration and down almost a pound.  He just got his appetite back today… I was thankful for that.  But he also still has a very upset tummy and a bilateral ear infection.

With all the “ick” I am exhausted.  And, even though I don't get much sleep, I haven't been able to get myself to sit down in the middle of the night and deal with the pile of paperwork that sits on my desk.  I am sure there are things in that pile that should be done already.  It nags at me every time I pass by.  Even more nagging,  I am behind on the blog (which is self-inflicted pressure, not anyone else’s… but it’s how I keep pictures and life stuff sorted.  It is the only “scrapbooking” I do for our family and I can guarantee if I don’t keep up with it, I will never go back and do it “someday when I have time”) and I haven’t even written Gavin’s “9 month” post.  I did manage to take his pics  on the 16th in between Preston being sick and I jotted down some things about his ninth month, but, once again, complete failure to execute.  I will have to backdate the post and hope I get it done before he is ten months.

The list of stuff that I griped about this month is long...  the status of our garage was near the top of that list.  It’s small and very full.  (We are bordering on needing an intervention from the show “Hoarders” quite frankly!)  I am trying to get into the Christmas spirit and motivated to decorate (for the kids… because otherwise I’d boycott this year!  I still don’t feel settled from our move.) I have been whining about feeling overwhelmed about decorating for Christmas when I still haven’t finished hanging pictures and Gavin’s room is still just a thrown together mess.  You get the drift.  I complained and whined about a lot of things.  My house looks like it was ransacked five seconds after I get it straightened back up.  I clean the kitchen and, no joke, two minutes later there is stuff all over every counter top.  I am not sure how it happens.  But, it always does and I managed to gripe about it this month. A lot. 

Then a friend posted this on facebook. 

It was then that I remembered that I am always able (or should be able) to find little things here and there for which I am thankful, even on the rough days.  The kids could have been worse.  At least I am fortunate enough to have a washer and dryer to accommodate Preston’s bedding and wash it at home instead of dragging it all to the laundromat.  I am thankful to have a garage full of crap to complain about in the first place.  It’s all perspective and how we choose to spin it.  Sometimes, I just need to be reminded. 

Still... I am thankful that it will be December in less than an hour! 

Foto Friday 2, vol. 4

For Christmas 2005, John and I received the most beautiful gift from Gracie, courtesy of her nurse, Judy. Judy was Gracie's nurse from November 2004 through July 2008. She worked so many hours... gave so much of herself to Gracie and to us... and was (will always be) so much more to our family than "Gracie's nurse."

I have photographed her (their) priceless gift to share here with you. (The beauty of the message is easily seen despite the fact that my photo quality isn't great because it's pictures of a laminated picture book.) Suffice it to say that tears were plentiful when we opened this little book on Christmas Day 2005. Reading it today is no different. It still affects me just as much, if not more. The words, both in the beginning and within the book, are so beautiful.

The title page reads:

Dear Mommy and Daddy,
In this small book, you will find
photos of me as you see me in my normal,
everyday life. No touch-ups, fancy
clothes or hairdos, or special backgrounds - -
just me, naturally. And therein lies the magic!

My physical voice is presently silent, but my
spirit has always spoken loud and clear to all
who would listen - - and you have always listened.

So once again, please listen as my spirit tells you
what is in my heart and what I would have you know.
And in doing so, feel the magic of Christmas - - and me!

Love,

Gracie

Happiness is... "Happy"

The first time I heard this song, Happy by Natasha Bedingfield, I thought the chorus was catchy. The next time I heard it, I paid better attention to the lyrics... and it was then that I decided I really liked it.
Check it out...

Happy 2010 - The power of yet

Happy New Decade, Happy New Year, Happy New Day to each of you!

It's no secret that I strive to look at each day as its own miracle - - an opportunity for change, growth, possibility. With the turning of the calendar, it's engrained in us culturally to be hopeful and make resolutions. And, while I am all for hope and renewal, I just don't try to find symbolism in the turning of the calendar. That's just me... if it works for you, then more power to you! If I give that much weight to 11:59 on December 31st, and January 1st is a bummer of a day, then I'd tend to look at that as a sign for the year. I can't function like that! (It's the same way I look at a Monday... I don't let that day's outcome drive the rest of the week.)

Tonight, we bid farewell to 2009 and to an entire decade. In doing so, it's hard not to reflect on the changes that have occurred in our world and, of course, our own lives. While I find it so important to look back on where we've been (it only helps us in where we're going), I cannot spend too much time (at once) in a reflective place or I can start to get melancholy. I tend to question... overthink. Did I (or we) make the right choices? Did I (or we) do enough? I "what-if" everything that's already in the past rather than look forward. So, I (try to) reflect just enough to fuel the move forward.

As I look back on the last decade, there is just too much change (growth) to wrap my head around. Where John and I were as a couple (young, childless, wide-eyed at the possibilities of "our own" world), what was important to us (some of the truly important things, but not nearly as many of those as now), where we thought we were going (ah... the best laid plans), what we thought parenthood would look like (it's so much better, yet so much harder). It's impossible for me to imagine what ten years from now will be like. And, I won't try. If I have learned anything in the last ten years, it's that I can't possibly presume to know.

Likewise, if I reflect back to this time last year, I couldn't have foreseen where life would be today. So many changes. Good and bad. Some came easily. Others, much, much harder. So many miracles. Some disappointments. So many wonderful moments captured in our minds forever, stored in our souls like reserved breaths for those days when even breathing seems hard. The days when the power of yet seems too hard to fathom.

What's "the power of yet," you ask? It's quite simple, really. It's a tiny, three-letter word we learn as children, but for me, the meaning and power of which was not fully understood until I became Gracie's mom. I like to share "yet" with new moms of children with special needs as they learn to cope with delays in development or medical setbacks. It's something I use to turn a seemingly negative into a positive... it encourages possibilities... for every person and every situation.

For instance, last year at this time, a statement might have been:
- Gracie is not going to school full-time... yet. (She is now!)
- Gracie is not ready to use a reverse walker full-time... yet. (She is working on it!)
- Gracie is not ready to use a manual wheelchair... yet. (She's ready and waiting for her own chair!)

Or:
- We haven't made new friends here... yet. (We have made some great friends now and have new friendships forming. And, tonight for our last meal of the year, we shared a delicious dinner with dear, new friends who were our "yet" friends last year.)
- This new place doesn't feel like home... yet. (It does now!)

Things happen in their own time, as they're meant to, and we only need to believe in the possibility... the power of "yet." Today, I share it with you and encourage you to try it. It's empowering and it's hopeful - - a fitting concept for the new year and decade - - a fitting concept for every new day.

Three Word Sentence

At school on the Monday following Thanksgiving, Gracie put together
three signs unprompted...

"All done, no work."

That's my girl! No problem letting us know when she's had it!

Foto Friday vol. 29 - Meeting my true sister

"A true sister is a friend who listens with her heart."

I'm not sure who said this - - it's a quote I've known for a long time. Knowing the source, though, is not required to comprehend the meaning. Last Friday, Gracie, Preston and I had the privilege of meeting (in person) my true sister, Hannah, and her sweet Vivian.

A year and a half ago (actually to the day, I just realized), Hannah and I met through our blogs because of our daughters' shared diagnosis. We connected through our words instantly and, since then, Hannah has been a steadfast supporter, a shoulder to cry on, someone to celebrate with, laugh with, vent to and dish about favorite shows with. I learn so much from her... about life, motherhood, optimisim, advocacy, love, friendship. Our relationship started because of our amazing daughters, but it goes so much deeper than that commonality. I cannot imagine my life, this journey with my family, without her (and her family).

Hannah listens to my heart with her own... she is my true sister.

There were so many joyful moments in those few hours we spent together. From the first time we hugged through tear-filled eyes, to seeing Miss Gracie scoot toward Hannah and snuggle up, to holding Vivian at her request (be still my heart!) and hearing her delicious chatter as she read books in Preston's room, to seeing Preston run to Hannah with open arms because he, too, felt like he already knew Hannah and Vivian, to watching our kids share a meal (or tastes, in Miss Gracie's case!), to the many started, yet all unfinished, conversations between Hannah and me, to the interactions between our two year-olds that left all four of us rolling in laughter. It's impossible to find the words to describe it all. My heart is so full and my soul well-fed with memories of that day.

Here are a few pictures that captured some of the unforgettable moments last Friday. Both of us were so caught up in the moment initially that we forgot to get out our cameras. Thankfully, Hannah was better about it than I! Unfortunately, though, Miss Gracie was fast asleep (sadly, she ended up having a pretty rough weekend) by the time we started taking pictures, so we will have to get some with all three kiddos next visit... and there will be many more!




Though I only took a few pictures the whole afternoon, I did manage to catch a few seconds of Vivian and Preston together. The lighting is terrible because of the glare outside, but the content is gloriously joyful!

More on perspective

What do you see?


Grey, windy skies?
An approaching storm?
A reason to feel gloomy?

Or... do you see this?


The summer's last sunset as viewed from our backyard.
The gentle breeze caressing the palm tree as it bids the day farewell.
A beautiful array of color and light dancing in the wispy clouds.

It's all about perspective.

Not everything that counts can be counted,
and not everything that can be counted counts.
- Albert Einstein

Perspective

"It's all relative to your own experiences," I often tell my friends and family after they've said, "I don't know how you do it." Usually this is said in reference to the frequent curve balls life throws at our daughter and us. I constantly remind them that they'd take the same steps if in similar shoes. Sometimes they'll qualify statements about their own sleepless night because they know how sleep deprived I've been for the better part of six years. I am always telling them not to do that... of course they're tired if they're used to getting more sleep.
It's all relative - - experiences create your perspective. Learning about the experiences of others can change your perspective - - not necessarily because another's situation is more difficult or dire, but so many times because of the way in which others so gracefully and positively handle such situations.

Several months ago, Hannah (my friend and sister on this journey), wrote a poignant post on Perspective. I encourage anyone reading this post to click the link and read it (or re-read it if you've previously had the pleasure). It's the kind of post that speaks to my very core - - as do many of hers. I revisited it today because in the last handful of days, several of my friends have emailed, texted or called to say that after catching up on our blog, they've once again been able to take a step back from their own chaos and what they think is currently a big deal in their lives and re-group. They kindly say that our situation - - Gracie's life and how we function as a family in spite of all she endures - - gives them perspective on their own.

Perhaps "perspective" is one of the reasons so many of us blog. We share, we glean, we learn, we grow - - our perspectives shift as we read about and share in the lives of others. In the same way that my friends view our lives, I gain new perspective each day by following the lives of the Nelson Family. They are unmet friends in CHARGE and their daughter, Moriah (who has had a place in our blog sidebar for quite some time now), has been in the hospital for ten months. What the three of them have been through during this time is unfathomable. Yet, through it all, they've shown unwavering faith and have handled themselves with the utmost grace. They are amazing people... amazing parents... and they have a beautiful daughter who is such a sweetheart and clearly a fighter.

While we've weathered a lot with Gracie, what Moriah and her parents have endured is unimaginable, even to us. Through their experiences (that they so openly and honestly share with the blogger world), they've taught us and continue to teach us so much about courage, faith, love, what matters and what doesn't. They give us and teach us perspective daily.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Moriah's medical issues continue to stump the doctors and her condition has taken yet another downturn. Whether you pray, send positive thoughts or meditate... please direct some of this energy to the Nelson family.

Words I love... and some days, words I need

Shortly after Gracie was born, a friend shared these words by Erma Bombeck. I printed them, along with a few other quotes and poems, and had a handful of copies strategically placed throughout my spaces, so that when I needed to regroup with more than just a picture of Gracie (or a picture of John and Gracie), I could. I had one in my desk drawer at work, one on a bulletin board in my home office and after she got her trach, I had one folded in an envelope at the bottom of her suction bag along with her emergency pacemaker info.

These words speak to me, not because I think I am exceptional for being a mother to a special needs child, but because they give me the strength to dig a little deeper and find the traits I know I possess and need to use in order to mother my daughter. It's not easy sometimes, okay - - a lot of times, but motherhood, to any child, isn't supposed to be easy. I don't read this too often anymore, and since we've moved, it's not up in the house anywhere. But, after a very rough couple of "obsessive compulsive" days with my girl, I pulled it out and read it today.

I will be calling Monday morning to have her ears checked, as I am quite certain that something is going on and, other than to be exceptionally rigid in routine and obsessive beyond distraction or redirection (and to the point of being a little self-injurious), she rarely gives any indication when it's her ears.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

'Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity.'

Finally he passes a name to an angel and smiles, 'Give her a handicapped child.'

The angel is curious, 'Why this one, God? She's so happy.'

'Exactly,' says God. 'Could I give a handicapped child a mother who does not know laughter? That would be cruel.'

'But has she patience?' asks the angel.

'I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy.'

'But, Lord, I don't think that she even believes in you.'

God smiles, 'No matter. I can fix that. This one is perfect. She has just enough selfishness.'

The angel gasps, 'Selfishness? Is that a virtue?'

God nods, 'If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.'

'I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.'

'And what about her patron saint?' asks the angel, pen poised in midair.

God smiles, 'A mirror will suffice.'

Shine... in her own time

I write this with scattered thoughts, my brain in tangent mode and my body more exhausted than usual due to less than an hour of sleep last night thanks to Gracie's latest string of "night parties." Tonight appears to be no different than last and with John on graveyard shift now, there's good reason to expect that the posts on this blog might be a little less intelligible than normal.

Anyway... I am thinking about Gracie... and all that she is doing lately. And, because today she met with her new home hospital teacher and the district program specialist, I am also thinking about all that she is not doing. I don't like doing that. It's hard to explain to someone who has just met her why she doesn't just sign in open conversation even though she has plenty of vocabulary to carry on a short little exchange like Preston does. She has the expressive language, but it's not always something she uses. It's "stuck" in there... a lot. Then, most often when you are least expecting it, it flows out of her like a little river. The same is true when you ask her to complete a task. Sometimes she'll stare at you blankly and, more often than not, the moment you turn your back (or she thinks you're not looking) she does exactly what you've just spent the last umpteen minutes trying to teach. She's always paying attention, she has an amazing memory and yet (what seems to be) the simplest task can be left undone for several lessons and then... she just does it.

For example, we have these colored bean bags that we used to teach Gracie her colors. She has known them for a long time (red, orange, yellow, green, blue, purple, black and brown). But, when you show her the bean bags now and sign, "Gracie, what color is this?" she often stares blankly at you or looks away. While I tend to joke that she's thinking, "Mommy, if you don't know your colors by now, then something is wrong. Aren't you bored with this silly game?" the fact of the matter is that she's actually not responding (some of the time) due to an inability to access her expressive language. (Some of the time she's just ignoring me!) When she's "on," she will sign "color" and then sign the name of the color. A few weeks ago, Preston brought out the bean bags and when I asked Gracie the colors, she quickly breezed through them. Later that same night, the kids were playing with blocks. Gracie picked one up, turned toward me, signed "block," then paused for a moment, signed "color" and then "blue." "Yes," I said and signed (in pure shock at this random burst of unprompted expressive language), "that's a blue block." This went on for a moment, with three more blocks and then she turned away from me and continued picking up blocks (and one stacking cup), signing "color" and then the name of the color. This is the pile I made. She made only two mistakes and corrected herself...

Then, the next day, not a color sign in sight!
Instead, she played herself a little game of (what I now call) "Alphabet Soup." Gracie knows her alphabet. She can sign the whole thing. She has it memorized and will speed ahead of you if you're not signing at that moment's preferred pace. (Other times, like today with the new teacher, she wouldn't even sign "A"... UGH!) Anyway, the kids have magnet letters and we work with them in various ways all the time. This is a bit more abstract than the flashcards and other ABC printed items we use because the letters are able to be manipulated - - flipped over, upside down, etc. and thus, the letter's appearance changes and she has to think about orienting it correctly or must recognize it the way she's holding it. That night, hanging out on the family room floor, she just started picking them up, signing the word "letter" and then naming the letter. I was awestruck. I didn't give her any indication that I was watching her (as once again, her back was turned to me). I just started making a pile and mental notes of the things she was doing. At first I didn't realize that she was signing "letter," I thought she was picking them all up and signing "L"! Silly me! She made a few mistakes... she picked up the "R" by the rounded part upside down and signed "K." Um... yep, that does look like a "K." Smart girl. I didn't want to interrupt her so I made another pile of the "mistakes" and we went over them when her little game ended (to which she paid little attention!).

This is a picture of the "correct" pile, no mistakes here. (I oriented the "M" and "W" the way that she signed them... and would have accepted either label as a correct answer!)

She plays this game often now, but will NEVER let me play with her... I can watch and sit by, but if I try to ask her about a letter, she will stop. Grrrrrrr...

All of this makes me think about the lyrics to a song by Rachel Coleman (co-creator of the "Signing Time" series... a huge hit in our house with kids and parents, alike!). The song is called, "Shine" and it has often played on my internal soundtrack over the years as I've worked with (and thought about) Gracie.

"Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do
Until somehow you do
And you do — you do — you shine"

When Gracie turned three, we knew that her educational placement would have to remain at home, her medical status still too fragile and unpredictable. Additionally, she was incredibly afraid in any indoor environment other than home. It didn't matter where we went - - Nana's, friends' homes, the mall, a small store - - it was all so terrifying... so much so that pushing her limits and forcing these outings on her would often cause her such significant stress that she'd literally become ill for days at a time. Back then, stressers would often trigger her horrible abdominal migraine cycles and she'd be down for the count, functioning in the dark and barely tolerating pedialyte. It was torturous to watch, we were helpless and the scars from those years of unbelievable discomfort are still so fresh - - for all of us.

We wanted so badly to see her in school, making little friends, playing, etc. But that just wasn't in her cards. She has missed so much because of being at home, and yet, that was the only possibility for her at the time. Thankfully, her home-hospital team was tremendous, her nurse, Judy, and John and I worked tirelessly with her. It felt, though, like those years stuck at home, literally housebound, would never end.

"The days and months and years,
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine
And you do, you do, you shine"

She is no longer in that place medically or developmentally. She is so willing to try new things and go new places. She still prefers being outdoors... but so do her parents and so do most kids! Developmentally she is miles beyond where she was as she was turning three, and yet, there are days that, until I re-read the measurable accomplishments, I forget how far she has come. Those days are more prevalent this time of year as I prepare again for an IEP... in a new school district with new providers who, while caring deeply (I can already tell), they don't yet "get" her. They don't know that she needs time to process - - more time than the "other" kids who need time to process. They don't know that next month, I will likely be showing them a picture or video of her doing the "thing" that they just couldn't get her to pay attention to all of this month.

"Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine"

I think the other thing that sometimes makes my mind wander is reading about the accomplishments of countless others who are so much younger than Gracie. The ways in which Gracie is affected by CHARGE Syndrome are so vast and, quite frankly, severe, and then as if that in itself isn't enough, she deals with the brain injury, too. Knowing all of this about her, and being completely amazed by how far she has come and continues to go, I still sometimes feel a little sting in my gut when I learn about all of the amazing things all of our friends in CHARGE are doing. Make no mistake, I love reading about them and all that they, too, are constantly overcoming. I am so incredibly proud of them and truly happy for them and rejoice in it all along with their determined, hard-working, endlessly supportive parents. But every once in a while, and especially this time of year, I become more consciously aware of the leaps that many kids are taking beyond my daughter's. I don't dwell on it and having these thoughts does not (IN ANY WAY) mean that I don't completely accept her for who she is. I know that having these feelings is normal. We all want our children to reach the their full potential... whatever that may be for Gracie, I am doing everything I can to help her reach it. The pride I have for her and all that she continues to overcome is beyond description. I believe in her. I believe that now that she will finally be able to go to school regularly that she will continue making great progress. I know that it will take time... and that my job right now is to help her new team understand what I already know so well... Gracie shines, in her own time.

"Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine, and you shine"

"Courage Is"

I have been a fan of this song by The Strange Familiar for a short while now. I first heard it last summer on a Sacramento radio and when I did, I couldn't get it out of my head. Whether the music style speaks to your taste or not, I am confident the lyrics and message within will.

In a way, it reminds me of a quote (I think I recall it correctly!) from the (less than stellar, but not horrible) movie "Bounce,"

"It's not brave if you're not scared."

That quote always stuck with me... and when I am feeling really uncertain, scared or afraid, I remind myself that I am also, by facing those fears and pressing forward, being brave and courageous.

(If you're a fan of "The Biggest Loser," this song may sound familiar to you - - it played on the season premiere in January. I also must mention that The Strange Familiar, unlike many bands these days, sounds just as good - - if not better - - live.)

Happy Listening...

Take all my vicious words and turn them into something good
Take all my preconceptions and let the truth be understood
Take all my prized possessions and leave only what I need
Take all my pieces of doubt and let me be what's underneath

Courage is when you're afraid but you keep on moving anyway
Courage is when you're in pain but you keep on living anyway

We all have excuses why living in fear something in us dies
Like a bird with broken wings, its not how high he flies but the song he sings

Courage is when you're afraid but you keep on moving anyway
Courage is when you're in pain but you keep on living anyway
keep on living anyway
keep on living anyway

It's not how many times you've been knocked down
It's how many times you get back up

Courage is when you've lost your way but you find your strength anyway
Courage is when you're afraid
Courage is when it all seems grey
Courage is when you make a change and you keep on living anyway

You keep on moving anyway
You keep on giving anyway
You keep on loving anyway

 

Fresh Air and Citrus... the cranky cure-all

This morning, my "Happy New Day" attitude was not present. I "woke-up" (and I use the term loosely... I think I'd been "one-eye-open-asleep" for about an hour when Gracie decided it was time to get her routine going) with a screaming headache, the feeling that someone had sewn my eyelids shut and placed a large, heavy object on me making it impossible to move. I did not want the day to start. I did not feel rested or renewed. I was NOT happy.

You'd think that I'd find a little cheer in the new day since through her sleepless, cough-filled night, Gracie's rash had diminished tremendously. It remains only on her ears, scalp and torso. But, no, this good news was overshadowed by my need to indulge in how tired and cranky I was. (Turns out my not-yet-met, can't-wait-to-meet friend, Hannah, had the crankies yesterday. Apparently, they traveled south overnight!)

My state of mind didn't get better as the morning wore on, either. Preston, who is now in full bloom with a cold, was also up all night, nose overflowing, tossing and turning (and STILL not sleeping in his room). Between my two patients, I still hadn't rested and thus, lost all patience this morning.

My fuse was short... and it wasn't pretty. We all had cabin fever, and despite the fact that it was toasty outside (not good for the lingering rash), I grabbed my camera and let the troops out. And that was a good thing.

Gracie scooted all over, coughing and frothing at her trach, but she didn't care! She was free! Preston ran all over, coughing and frothing at his nose, but he didn't care too much (he cared a little... he kept running to me to help him "blow"!).

Preston signed and said, "Mama, orange, eat," and started tugging at an orange. I picked one, peeled it and we ate it together. Juicy, sweet (but not too) and it smelled heavenly. It reminded me of my Grandpa's ranch as a little girl. I shared a little taste with Gracie, who was far more content playing with the oranges than eating them! She even signed "orange" unprompted! (You can see it in the pics if you look really close!)

I put the leftovers and peels on the kitchen counter and we hung out a bit longer before lunch and tube-feeding time. When we came back in, the house smelled so good. Fresh oranges... ahhhh.

As I got Preston's lunch ready, I realized that my headache was gone and so was my foul mood. Fresh air and citrus with my kids renewed my day and beat the crankies!
And, everyone took a much needed fresh-air and citrus induced siesta!

 

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."