Your Lollie or Mine?

Today, Gracie got to go back to school! YAY!!! Finally, our nursing issue appears to be resolved!

After school, John and I took the kids for (much needed) haircuts. As usual, they each enjoyed their time in the chair and were very well behaved. So, as usual, lollipops were offered as a special treat afterward. (Daddy decided he was also very well behaved and he had two lollies during their haircuts!)

When we walked outside, Preston had an apple lollie and Gracie had cherry. What ensued next was captured on my cell phone...

Yummy!

Each very much enjoying their own lollies... but notice the look on Gracie's face. 
There is no mistaking... she is clearly scoping out Preston's!

She reaches for his... wanting to trade.
(I love this exchange!)

After the trade, Preston was:
a) not thrilled with the cherry flavor (just like Mommy!)
b) not thrilled with Gracie's slobber on the cherry lollie
c) not thrilled after realizing that, because she put his apple lollie in her mouth, she slobbered on it, too
d) all of the above
ANSWER: d!!!

After Preston returned Gracie's cherry lollie, he expected that she would return the apple to him.
She did not!  She was perfectly content to keep both for herself!
(One of our favorite nicknames for Gracie since she was a baby is "Lollie," so this pic is fitting!)

After John pried the apple lollie from her hands (which he rinsed with some bottled water to appease Preston), Gracie laughed.
During this whole exchange, she spontaneously signed, "candy," "red," "swallow" and "sticky."
I love these moments with her - - unprompted communication that is unlocked when I least expect it.  Just wish we knew how to keep it unlocked...

A very satisfied young man... both with his haircut and the return of his slobber-free apple lollie.
(I love his shorter cut... but am already missing his shaggy, surfer-dude locks!)

A fantastic way to bid farewell to January and say hello to February. 
(And, I am so grateful that TieBreaker had the good sense to stay put during his mama's least favorite month!)

No nursing & the 49ers lost... still a GOOD day

~ Yes, Gracie still is without nursing and continues to miss school :-(

For those not following that mess on facebook, we are working on our fourth nurse since August 31st.

At the end of October, her first nurse quit to go back to an admin position.  Homecare, and especially caring for Gracie, was too demanding physically and not enough pay.  

Mid-December, her second nurse of the school year was let go (by us and the agency). 

The third nurse started January 9th, worked two days and then called off on her third day.  After the holiday weekend, she no-showed... for two days.  The agency called her emergency contact, as we were all concerned, and that person said she'd been in bed with a migraine for two days.  She never took the time to call in.  Now, after a week, the agency still hasn't spoken directly to her.  She has been let go, again, by us and the agency.

Last Thursday, the agency sent me a nurse to interview - - that person, while nice, had no trach experience to speak of.  While I'd consider taking the time to train some for a while in our home, Gracie needs someone with enough experience... i.e. has handled emergent situations... to handle caring for her all day at school and on the bus rides to and from.  Experience is necessary.     We don't have the luxury of time here.

On Saturday, they had scheduled another nurse to come out and interview at 1pm.  At noon, that individual called to reschedule... clearly not a priority even after they explained that Gracie is currently unable to go to school until we are properly staffed. 

We have considered switching agencies, but the harsh reality is, it's really no better anywhere else.  We'd only be trading evils.  Furthermore, two of the nurses that have been here are double signed at agencies, and nurse #2, who was let go, was mentioned by another agency back in October when we considered switching companies... they called her "an ideal fit!" 

WHERE are the reliable, committed, caring nurses? 

~ Yes, the 49ers had a heartbreaking loss last night.

But...

~ John stayed home to help me with the kids and give my body a break.
(His four day stretches of leaving at 5am and getting home around 7:30pm are taking a toll on me since I have no help with Miss Gracie.  While Preston is "easy" to care for, in my "current state," Gracie's physical needs are not.  Lifting her and her equipment, bending over for extended periods, squatting and kneeling constantly, etc, are getting to be a bit much for my body... especially by day four.)

~ Before the kids woke up, we had about an hour and a half of quiet conversation time with hot mugs of coffee (decaf for me!) cuddled under blankets on the couch.  Priceless.

~ Gracie is fully recovered from the horrible (worst in at least a year) abdominal migraine.  She is finally up to full strength formula and volume again.

~ John made a delicious breakfast for us and then yummy snacks to enjoy while watching the game.

~ Preston got some much needed "daddy time" playing outside... a burn-off of testosterone that can't possibly be matched by playtime outside with mommy, especially right now!

~ I got seven loads of laundry done... and by done I mean folded and put away... all before halftime.

~ At one point in the evening, I laughed so hard I had tears in my eyes and couldn't breathe.

~ Gracie spent halftime (and more) fully engrossed in her new iPad. 

It was, despite the football loss and lack of nursing, a good day.

Mothering my daughter... sometimes a mourning process

I wrote portions of this post nearly nine months ago and, thanks to my sputtering computer at the time, it never saw the light of day on the blog.  Whenever I went back to it, I couldn’t condense it down. If anything, I only added more somewhat cathartic ramblings.  I considered not publishing it - - I have about ten such posts - - vents that I wrote for myself, considered posting but have never actually hit "publish." But this one, I feel, while disjointed in places and, in many ways, out of date, is relevant as far as emotions go.  My hope is that it might offer insight, perspective and, above all, speak to some of my sisters (and brothers) on this journey and reassure them that they are not alone when they feel the weight of the heavier days as they navigate an unexpected path with their child.

The later part of this week has been rather rough.  Gracie went back to school after having missed the last three (plus a part of the fourth) days of school prior to Christmas break due to nursing issues.  She attended Monday and Tuesday with her new nurse (our third nurse since school started August 31st… a whole other issue) and then her nurse called off sick on Wednesday.  By Wednesday afternoon, Gracie was showing signs of an approaching abdominal migraine and, by 11pm, was downright miserable.  It is the worst one she has had in over a year with violent gagging and retching for hours on end.  I literally did not turn off the suction machines for over three hours as I alternated between suctioning her trach and mouth.  She finally fell asleep solidly on Thursday morning around 6:45.  Needless to say, she also missed school Thursday and Friday. (The good - - and rather amazing - - news is, that despite other abdominal migraines and illnesses this year, these are the only two days of school she has missed because of her own health.)  She is still quite miserable and is barely handling enough Pedialyte to stay properly hydrated.  This is her fourth abdominal migraine since school started, but they all hit over non-school days and we were able to avoid this level of misery by holding off feedings and giving her gut a rest.  That’s not working this time and neither are meds.  It’s utterly heartbreaking to watch her feel awful and be so helpless.   

Between that (as if it’s not enough) and my decision to continue purging all of her clothes that we’ve kept for so long (not entirely intentional, but that’s another story), the later part of the week has left me feeling very “un.”    I am super happy to pass her clothes down to my niece and a dear family friend who is expecting (Gracie had so much as a baby because people spoiled her rotten and because she wore those baby sizes for a really long time!),  but it also left me feeling quite heavy hearted.  I would see something she wore in the NICU or PICU and was instantly transported to those days.  I would come across something she wore when she was three and remember thinking into the future and wondering what that might look like.  She is almost nine now and many things do not look like I imagined or dared to dream for her.  Sorting through everything to pass on, donate and sell took me on quite a journey in my head (and heart) and made me come back to this unpublished post from last spring…   


Celebrating Gracie's birthday is, without question, joyful. But, ever since her birth, this time of year is wrought with a dichotomy of emotions. We are so grateful for every single day. The fact that she is here with us is an outright miracle, so marking her eighth year is something spectacular to celebrate.

But along with her birthday comes a bevy of evaluations, progress reports, renewal of services and therapies, IEP season, etc. We are looking at her current goals, seeing how she's progressed, regressed - - or remained "stuck." We are talking about her health, which is less than stellar. We are evaluating and assessing everything regarding my girl and it's just too much at times. Whoever comes to the door or calls, beware... you just don't know if you're going to get the rational mama or the hot-mess mama.
My bet is on hot-mess.

I won't be so bold as to speak for all moms of children with special needs, but I'm fairly certain I'm not alone on this... at the same time I celebrate my amazing daughter's entrance into the world and every piece of who she is, I mourn what will never be. That's not to say I give up on anything with regard to Gracie... that's the furthest from the truth... but there is also reality. It's also not to say that I spend every other minute countering a positive thing that happens with another that won't. But, I am a parent... and I dream big for my child... so as each year passes and certain milestones aren't hit and goals aren't met, the content of those dreams changes... and with that, comes some mourning.

While I have known all year that Gracie was not meeting (or making much progress on) many of her IEP goals, it is still so hard to sit down and discuss it... in black and white... and realize that her desire and capacity for the more academic structured goals is clearly waning. Again, not to say I will ever give up hope, but there comes a time when we have to be honest about the direction she is (or isn't) headed and alter her goals to create a functional and meaningful path for her. This, I assure you, does not come without tears, nor does it come without questions -- questions such as,
"Have I (we) done enough?"
"Have I (we) missed something?"
"Did I (we) push her as hard as she needed to be pushed?"
"Did I (we) push too hard and make her completely disinterested?"

I can go on... and on. Creating goals that are less academic and are more functional feels like a bit of a step-down - - a bit like we are giving up on her potential - - and that is painful. I know in my head and heart that we are in no way giving up... we will still address and try to teach in the more academic direction, and we will be focusing the IEP elsewhere... but that doesn't mean that this isn't an incredibly painful turn in the path we are carving out with Gracie.

When she was born, I immediately packed away all the traditional parenting books, as there just wasn't any point in reading them. We knew milestones wouldn't be met on a typical timeline and that was okay. We had entered another world... Gracie's world (which, of course, included the world of CHARGE Syndrome and, later Cerebral Palsy, albeit mild)... and in her world, accomplishments were the goal, not the timing of them. We learned to celebrate even the smallest of victories because they were a victory. We learned as much as we could about CHARGE Syndrome so as to be informed, but we were also careful to not let that define her or any of her team's view of what she was or wasn't capable of. That being said, we were keenly aware of the "typical milestone" ages for children with CHARGE. For instance... walking. That is a big one.

"Why doesn't she walk, yet?" is commonly asked, even amongst those "in the know" in the world of CHARGE. I have fielded a bevy of questions on this subject, especially of late.  Doctors asking, parents of other kids with various special needs, parents of kids with CHARGE... "Isn't she in therapy?" I can go into the details of her therapy regimen - - it is intensive, both in session and at home - - but the point of all this is that these inquiries (which are sometimes judgments) only remind me that all of her hard work (and ours) has yet to yield the desired result.  There are numerous explanations for her delay in this area... she has no semi-circular canals, her vestibular nerve has not been visualized in a CT and is believed to be malformed or missing entirely. She has scoliosis that has affected her hip alignment and her leg lengths.  She has mild diplegic cerebral palsy.  Her hospitalizations and chronic illnesses have created roadblocks to maintaining strength and stamina. And, still, after all these years, I will not give up... but I also won't pretend that at moments I feel sad, frustrated, deflated and defeated.

But then, I look at my child. She is neither sad, deflated nor defeated... she, whenever she feels well, is happy and determined. She works when she can, rallies when she has the will and fights the good fight. And, therefore, so do I. What other choice do I have? My daughter lives and breathes the exact opposite of defeat. And, though I am her mother and it's my job to teach her and guide her, she teaches me. So... I persevere. I remove the heavy feelings from my shoulders and heart and move on.

~     ~     ~     ~     ~     ~     ~     ~     ~     ~

When Gracie was an infant, I attended a friend's baby shower and it was all I could do to grin and try to enjoy it. (Quite frankly, I had a hard time enjoying baby showers for a really long time). Not that I wasn't happy for my friends, of course I was. But I couldn't stop myself from thinking about our couple’s shower where John and I were surrounded by family and friends, opening a generous bounty of gifts, blissfully unaware that what we were envisioning for our life and our baby's life was not going to happen. There were so many things we were given that we couldn't use for Gracie and watching other people open those same gifts stung a bit. I'm not sure how many, but there were definitely a handful of showers that yielded tears once I got home - - or at least to the safety and seclusion of my own car.

My days and nights are filled with constant assessment and analysis of how she is doing. How is she breathing? Too fast? Too labored? What do her secretions look like? What is her temperature? What is her coloring like? Does she have edema? Is she tolerating her feedings? Is she getting enough calories? Are the whites of her eyes cloudy? The list goes on and it is literally a running dialogue within my subconscious. I never stop thinking about these things. Ever.

Most eight year-old girls are going to slumber parties and have hundreds of play dates under their belts. I can count on two hands the number of play dates and birthday parties (that didn't include her brother) that Gracie's been invited to and can count on one hand the number she's been healthy enough to attend. I am grateful that she has her friends at school - - the kids in her class whom she truly enjoys.  (Since writing this last year, I have learned that she has stopped being social at school.  This was shocking and sad news for me because she is, at home, in the community and when we go pretty much anywhere else, incredibly social when she feels well.  So, now, yet another thing for me to think and worry about… why has her school experience changed so much…?)

Last Christmas, good family friends went to see The Nutcracker... three generations of women (the youngest the same age as Gracie) got dressed up, went out to dinner and enjoyed the ballet. I saw the pictures on facebook and out of nowhere came the tears. I cried hard, knowing full well my mom and I will never be taking Gracie to see a performance like that. She can't hear the music and we certainly can't be turning on the suction machine every ten minutes during the ballet. Sharing my love for the theater... all types... with my daughter was something I envisioned... and it just won't ever be a reality. So, we change our vision and go to Bubblefest instead... but that doesn't change the fact that I mourn these types of things.

I will never comfort her when her heart is broken over her first love.  I will never ground her for missing curfew.  I will never help her plan her wedding or pass down family heirlooms to her.  She will not call me to seek advice about life the way I call on my mom.  She will never surprise me with the news that she is having a baby of her own and I will not excitedly shop for her babies the way that my mom shops for mine.  These, amongst many others, are tragically sad things for me to think about.  Don’t get me wrong… I don’t think about them all the time, but I do, indeed, think about them.  I let myself be sad for the experiences she will not have and what I will not experience with her.  And it breaks my heart to do it.  But I also don’t stay in that place too long or as often anymore. 

Because of all the things that we mourn and all that we’ve experienced due to Gracie and through Gracie, we’ve gained a perspective that most people aren’t privy to… the ability to recognize the power and miracle of day-to-day moments, the knowledge that her needs and wants are simple and, thus, so are ours.  She doesn’t mourn what I do… she doesn’t comprehend the losses in the way that I do.  She need only to feel loved, give love, be healthy and be happy.  Knowing that, on the healthy days, she has all four of these gives me great joy.  And that joy helps me remember what’s most important as I dream for, fight for, hope for, advocate for and love my daughter. 
  

Showered with love and kindness

Set under the guise of a neighborhood cookie exchange on December 23rd, my dear friend and neighbor, Rachel, hosted an amazingly generous and creative surprise baby shower. The work, planning and thoughtfulness that went into the evening was incredible. And making it even more special was the fact that even though friends from afar were not able to attend, their presence and involvement in the unforgettable evening was easily felt. I am one lucky girl... and TieBreaker is one lucky, loved baby boy.

(And, even though my sweet friend, Catherine, was at the shower as a guest and not working, she also just happens to know her way around a camera!  EVERY photo here was taken by her.  Thank you so much, Catherine!  I am very grateful to have such great photos capturing the fun, special evening it was.)

Surprise!!!

LOVE this of my mama... looking so happy!

Rachel adorning me with a bedazzled "Mommy To Be" sash

My dear friend, Rachel, the consummate planner and hostess.

There was a "blue" theme... even Blue Moon beer and Blueberry soda for me!  And, those who know me well (or read carefully here!) know that I LOVE me some mint chip ice cream, especially when pregnant.  Rachel made (yes, MADE!) blue mint chip ice cream.  Yummy! 
The house was "baby boy" decorated, the food was delicious and plentiful and the playlist on her iPod was all songs with the word "baby" or with boy names in them - - there wasn't a detail she didn't think of.  So special, so fun and so unforgettable.

I just love this photo!  We clearly were enjoying ourselves!

There were ornaments for everyone to decorate.
The guests made one for themselves and one for our family. 
So sweet and such a creative idea!

What a wonderful group of ladies!

My reaction when opening the package of quilt squares.

With the assistance of one of my oldest, dearest friends, Becky, whom she hasn't even met in person, Rachel secretly sent fabric squares to many of our friends and family - - both near and far - - and they each decorated in their own special way.  Her mom will then be piecing them together and making a quilt for TieBreaker.  The moment I opened the package, I knew what it was and I burst into tears.  My emotions continued to overflow as I opened each square and discovered so many lovely sentiments from people who mean so much to our family.  It is the most incredible gift.

As if the quilt weren't enough...
This is my reaction to the Gift Card Tree.
We are so blessed to have so many people who love TieBreaker and our family so much. 
I am still overwhelmed by the generosity.

My mommy, Jewell, me and Catherine

Bump by the tree!

The beautiful treats made for the cookie exchange.

Though the cookie exchange was a guise for the surprise, it was definitely a legitimate and delicious exchange!  Rachel's mom, Sally, made a beautiful diaper cake for us, too, which will be coming in handy very soon!

32 weeks and counting (and contracting)

Dear sweet, busy-as-can-be TieBreaker,

Literally, at this moment, as I type to you, I am having a contraction.  Nothing horrible, but definitely par for the course with you several times a day.  These Braxton Hicks have been happening sporadically for a while now, but have become a regular (and timed) part of our evening, usually past 7pm.  Last week, I had them every 6-10 minutes for over two hours... a bit alarming, but thankfully things subsided and went back to the regular "irregularity" by the next day.  I talked to my doctor and got some clear parameters on when to call and when to panic.  Thankfully, you (and my uterus!) are cooperating.

I joked last week that I ate enough butter and sugar (in the form of yummy baked goods) during the holidays (over about a 10-12 day stretch) to double your weight.  (Really, though, I didn't indulge nearly as much as I did when I was pregnant with your sister and brother.)  In all seriousness, though, I have been feeling like you've grown a ton lately.  Your activity level and the way it feels when you're really busy (which is often) has lead me to comment more than once on what I perceive to be your size.  But, because you are my third baby, I figured that I am just feeling more, which is common with multiple pregnancies.

This morning I went to the doctor for my 32 week check-up (officially, I am 32 weeks and 4 days).  She did an ultrasound and measured you... twice.  Why twice?  Because you are measuring at 34 weeks and 4 days.  And, though it's not an exact science, all signs point to you being a big boy.  In fact, your estimated weight based on all of the measurements is already 5.5 pounds.  Holy Moly little man...  5.5 pounds is no joke.  She took an ultrasound picture of your face (she says it's your face... I couldn't tell, and usually I am able to pick out a lot of things in the ultrasound pics!) and commented on your already "very chubby cheeks."  We'll have to take her word for it and wait until we meet you... but that needs to be in another seven weeks, okay?  Please don't get any ideas about making an appearance early.  Just because you're looking to be a big boy doesn't mean that you're done growing in the warmth and safety of the little home I have made for you!  My doctor gave me strict orders to take it easy, but she also knows that, in this household, that's nearly impossible.  I am especially trying to limit how much I am doing with your sister, but take comfort in the fact that my body has been very used to lifting her and her equipment for years.

Daddy, Gracie and Preston love to watch and feel you move all over the place.  Feeling you, and your crazy antics, has been very entertaining for all of us.   Your big brother felt you move for the first time in mid-October (and squealed with excitement), though I have been feeling you since just before we went public with our news about you.  I actually wasn't sure it was you I was feeling, as it was so early, but my doctor confirmed back then that it is really common to feel movement sooner with each pregnancy.   Gracie has been very aware of you since pretty early on and loves to rub my belly with her head in my lap and sign "baby."  In fact, even before my belly was large and obvious, she couldn't get enough of being close to you.  She was the same way when I was pregnant with your brother.  At bedtime, when I read to Preston, he almost always has a hand on my tummy so he can feel you wiggle, kick, and squirm during the stories.  He cracks up when you're wild, talks to you all the time (gives you kisses, greets you every morning and tells you good-bye when he leaves for school) and loves it when he can tell what part of you he is feeling.  The other day he felt your head and knew it was your head without me saying anything.  He was excited and startled all at the same time as he felt and watched you move completely across my middle.  And even though I have already had two babies and know what it feels like to have a little life moving and playing inside me, I am amazed by how much more I am feeling this time.

And, as if all of that doesn't prove to you how excited we all are about you joining our family,  Auntie Vanessa sent me a message back in October, reminding me of a status update I had posted exactly a year before on facebook.   It shows just how much Preston wanted to be your big brother!

(October 24, 2010)
Preston: "Mama, I really need a baby brother."
Me: "What about a baby sister?"
Preston: "Nah, I already have a sister."
(Should I tell him I need a housekeeper and a million dollars?!  LOL!)

What Preston didn't know when he said those words was that mommy and daddy had been wanting to add to our family for quite some time.  Little did we all know that it would be you we were waiting for! 

You are already so loved by so many... it's incredible and overwhelming to me just how much love has been showered on you (and our family) as we await your arrival. You're one lucky baby!   Just remember... stay put... because I said so!

All my love,
Mommy