GranDawn’s Log: Month 9

Dear Nathalie,

Again, I am tardy with your letter.  Three whole days!  Why oh why can I not get this timing right??

Wee girl…you are full on crawling all over the place these days.  I expect you will be walking soon.  You seem much happier now that you are mobile and in control of (to an extent) what space you inhabit.

Also, rumor has it that your sleeping is starting to develop a pattern.  By “starting” I mean I just heard about it and by “pattern”, I mean that one day you sleep through most of the night and the next you are up hourly…that is a pattern, right?

Your eating is progressing with more and more foods of the baby kind being introduced – unfortunately, that spitting up thing is still an issue…

As of my last peek into your mouth…you have two little teeth on the bottom.  The IMG_4847_1489863575321only way for your Mummy to get a picture of them was for her to give you something to shove into your pie hole.  Look how cute (ignore the food all over your nostrils) your little teeth are!! Now that you have teeth, you are also learning how to adapt to having your teeth brushed.  Mummy thinks she takes better care of your teeth than she does her own…  She was always really difficult when it came to getting her to brush her teeth.  DON’T be like Mummy in that regard.

Also, SHOUT OUT TO MAXTON for getting his first tooth as well!!!   5 months old…seriously dude, cut your parents a break.   All these babies getting teeth just in time for St. Patrick’s Day.  The universe was calling out to the baby food companies to create a baby food combo of corned beef and cabbage – AMIRIGHT?

IMG_4911Now, back to you Nathalie…Let us talk about your cuteness:  I must say, you are super cute when you open your mouth for one of those little Gerber puffs but when you WEAR a yogurt puff… oh…my… word… the cuteness level is a bit more than I can handle…especially when you adorn your face with them.

Okay…I’m exaggerating.  It’s cute, but I am not losing my mind over it.

However, stick you in a pair of overalls and THAT is unbearable…okay, I am exaggerating again.  The real and ridiculous truth is that all I have to do is make this wacky noise that is my version of Whale-speak – it makes you giggle and then when you try to mimic the sound…THAT puts me over the edge…ALSO, it makes Grandfather smile and I really like it when Grandfather smiles.   (PSSST…you totally have him wrapped around your little finger.)

Not too much has changed since my last letter…primarily the crawling, perhaps a battle with some dry skin issues that Mummy is concerned could be Eczema and with the crap shoot of skin conditions and allergies that are within your heritage…it is highly possible.  Here is to praying it is not… I imagine we will have an answer by my next letter.

Nathalie 9mo

Until next time sweet girl, you keep rocking that crawl and teeth growing thing…perhaps soon I can introduce you to the best food in the world…CHEESE!!!

Peace Out BABY!

Love, GranDawn

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GranDawn’s Log: Month 8 (and 3 days)

Dear Nathalie,

My apologies for being tardy with this letter.  I’ve been a bit ill, and once you truly get to know me, you will learn that I go big when I get sick…no measly sniffles for me…nope.  Enough about me, this is all about you.

First, I was wrong when I posted last month that you might be getting a kitty.  My apologies…but not really, you have TWO KITTIES.  Your new fur sisters are Dash and Lucy and they are quite the cuties.  Hopefully, you will not suffer the scratches that your mother did as a child by insisting on love from the kitties…no matter what we said or did, she did not care, she did not stop…specifically with Ash, may she Rest In Peace.

spidey-crawl

You are crawling!! For the most part.  Your preference is to grab the carpet and pull yourself forward…it sort of reminds me of Spiderman.  You have also managed to acquire your very first black eye  (something about a Gatorade bottle and a tumble off a bed)…and I say FIRST because of a few reasons…you come from a line of clumsy and/or daring people and odds are you will have another or somethblack-eyeing like it somewhere along the way in your lifetime… Seriously, your mom managed to get her nose broken twice within a 6 month period.  Don’t fight it…tuck and roll.  Don’t get me wrong, I am not encouraging you to become a scrapper like Great-Grandma Sharon, I am just warning you that, in this family, shit happens and it is better to expect it than to fight it.  Protective gear is suggested.  I figure, now that you are mobile you deserve this warning – to be honest, you were much safer when you were stationary….ahhh, the good ole days.

[UPDATE:  Shortly after publishing this post, I received this message from your Mummy: “So I saw your GranDawn post and she does actually fully crawl now. LOL No belly on floor or anything! Super fast baby LOL.”]

Another new and exciting development: You have tried a green food!  Mama – or as you have said “Mum Mum Mummy,” gave you green beans!!  This is a bigger accomplishment for her than you, but I celebrate it either way.

You officially have a tooth poking through on the bottom!  I asked your mother for a photo but she stated that it is impossible to get a picture of you with an open mouth and not have you stick out your tongue.  Thanks to Aunt Pixie, sticking out your tongue is your JAM these days.  We can count on your Aunt to teach you all the weird things even though she is across the country… I don’t even know what to expect next.

8mo-nathalie-collage

I think that about covers everything…Although you have been pulling yourself up to stand on more than one occasion.  The idea of you walking anytime soon is just…well, can you hold off on that skill for at least 4 months.  Do your parents a solid…slow your roll.

Put that tongue back in your mouth!

We love you bunches,

GranDawn

 

 

I shake my fist in frustration…and I cry.

“When you hear hoofbeats, think of horses not zebras”  ~ Dr. Theodore Woodward

However, don’t forget…that zebras do exist.  I am a zebra.

I never wanted my blog to be another one of those dedicated to bringing awareness to something.  I also did not intend for it to be solely about me writing letters to my grandchild either…I just wanted a space to get things out of my head.  A place where I could share the things that I want my friends and family (F&F) to know and understand, but really don’t want to talk about.

This is my space.

Today, I am struggling again.  I am sitting in a hotel in Carlsbad, California and I am miserable. Not because the weather is bad or because I am with bad company and not even because I am here for work.  I am miserable because I am not able to do all that I want to do.  I have been forced to miss out on part of the agenda for this trip.

I am limited in my physical activity.  Most of my F&F know about my Ehlers-Danlos diagnosis but have little if any understanding of what that means.  HECK, I am still learning.  But here is the readers digest version (for me specifically, not all EDSers).

This condition is hereditary, my mother or father passed it on to me – I am guessing Mom.

It is a connective tissue disorder.  EVERY PART of and ORGAN in our bodies has connective tissue.

I have the Hypermobility type.  It won’t kill me…just cause me pain…always.  I try not to feel sorry for myself, so many others with EDS have it far worse but today I cried for me.

There are conditions that are referred to as “comorbidities” that are common to EDSers

The doctor who diagnosed me with EDS, has also stated that I have Mast Cell Activation Syndrome (MCAS),  and Postural Orthostatic Tachycardia Syndrome (POTS).

I have TMJ Disorder and Sleep Apnea

It has also caused my airway to be smaller/underdeveloped and contributes to sleep apnea, which I cannot wear a CPAP machine or use an oral appliance to correct because I have a reaction to both of them.  I have had to have allergy testing to figure out why I cannot wear dental devices to align my jaw and learned that my skin is sensitive to pressure due to DERMATOGRAPHISM (basically a histamine response to pressure) and an allergy to Balsam of Peru and Gold (as well as all the other environmental and animal allergies I have always dealt with).

I could keep going, but I am sick of typing about it and explaining my disorder was not the point of my post.  The point is…the frustration.  I hate being limited.  I had to accept years ago that I cannot wear cute shoes with heels.  In the past year or so I was instructed to not use stairs…  Because the worst of my pain stems from my sacroiliac joints being out of whack.  Yesterday…I was at the beach…in CaliFRICKINfornia…and I will be damned if I wasn’t going to get my toes in the sand.

There were stairs, quite a few.

And the days leading up to my trip were not what I call “down” days –  meaning, intentional  time of restoration.  The day of traveling was brutal.  I over did things.

I am paying the price.

 

(For those of you who want to learn more, this article was written by the doctor who gave me the diagnosis:  http://ehlers-danlos.com/2014-annual-conference-files/Heidi%20Collins.pdf)

 

 

The Struggle

I envision myself on a raft that is filled with air and is transparent, but blue.  I float on the ocean, but near enough to the beach that I can hear the waves hit the shore.  I hear gulls crying overhead. I feel the sun on my skin.  I have one foot dangling in the water, sunglasses on, my body is perfectly healthy, I am wearing a bikini.  No one around…just me. My body does not hurt. My mind is not preoccupied. I am at peace. With a song in my head:

“You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand…”

I have been seeing this image every day for the past 7 days.  I have been kicking the tires on “mindfulness” because I have been dealing with some anxiety.  I guess that, if I am to be honest, I have been dealing with anxiety for several years.  It started the year before my father died.  The stress of his poor health was getting to me.  The constant wonder of when the next call would come.  The overwhelming sense of responsibility and obligation while working two jobs, being a wife and a parent to two children…it was a bit much.  Not to mention the pain…the physical pains that were always there from an undiagnosed condition…Ehlers-Danlos Syndrome, but this post is not about that.

I was put on anxiety medication and after my father died, I assumed the anxiety would dissipate so I stopped taking the medication for almost a year…but I was wrong. The anxiety was still there, I just could not attribute it to anything specific.

My weight has been a constant struggle.  I tried All Of The Things that are available and affordable.  I have enough head knowledge to understand what is and what is not good for me…but I don’t have the control.

The anxiety is still there…here.  And I am an anxiety eater.

I am trapped in a vicious cycle.  It took a while to realize where my anxiety came from…the pain.  The constant thinking about whether or not I can or could or should do something and the repercussions if I try or if I don’t try.  Imagine dropping something on the floor…you would just pick it up, right?  I have to think about how to pick it up.  There may be no pain in the moment from bending or kneeling…but later…later is a different story. Dropping that thing on the floor could haunt me for days.

So I take my medication and I try to do my best to do my best, but anxiety makes me want to DO something, it makes my skin crawl and I can’t PHYSICALLY do the things I want to do to make the skin stop crawling – go for a walk, clean the bathtub, an hour of yoga, take a long drive to nowhere – so I turn to the thing that I can do… I eat.

Now if I could live in a box where the only food available to me was that which was good and healthy and necessary, I would be okay.  I think…I’m pretty sure.  But until recently, there were at least two and sometimes four others in my box and they do not share my struggle.  I also work in a box where people share their edible goodies…there are very few places in the vast building I am in for 8+ hours of my day where temptation isn’t lurking at me around a corner, or down the hall… leering at me…lying to me and telling me that just one bite, piece, nibble won’t hurt.  And I am weak in this matter.  I believe the lie. I give in to the temptation.  By eating…I am DOING something and I feel good…for a moment. Then I feel guilty and ashamed and out of control.  I stuff this feeling, these feelings…because there is nothing I can do with them, there is nothing I CAN DO WITH THEM.  The anxiety comes back.  I try to ignore it.  I long for a cigarette or a glass of wine, both of which would cause me pain in one way or another…creating more anxiety.

I begin looking up prescription weight loss medications but my insurance would not cover the cost and I look up eating disorders and cringe when I read about Binge Eating Disorder and wonder…is that me?  I contemplate calling my doctor…but I know what she will suggest, better eating habits (no kidding), exercise (pain), a dietician (costs more than I can afford), journaling my food (I have and it causes me to CONSTANTLY THINK ABOUT FOOD) … I don’t want to seem help resistant but I am tired of this vicious cycle.  I call my spouse and I cry about it and God love him, he wants to help me fix the problem…but I don’t know how he can.

I simply want to be on that raft, in my perfect body, pain-free, anxiety-free… at peace.

God hear my prayer…

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

GranDawn’s log: Month 7

Dear Nathalie,

No one can believe you are more than half a year old already!!  The years really ARE short.

nathalie7mo

You will be happy to know that the interlopers are gone and you and your parents have returned to your abode.

You will be saddened to know that Aunt Pixie and her kitty Avery moved to Washington… a mere 4 day drive away from home.  Saying goodbye to you was the hardest thing Aunt Pixie had to do that day.  I don’t think I have ever seen that many tears fall upon her face…ever. You have had two video calls with Aunt Pixie already and the most recent one was yesterday…As soon as she started talking to you from the computer you started inch-worming your way across the floor at her!  You were so smiley and pounding your little hand in excitement for quite some time…and then you saw my sock covered foot and decided to gnaw on my toes.  You really were excited to see her, though.  I pray that continues.

byeauntpixie

Your development is happening nicely.  You are sliding around and belly scooting along the floors and you even reach out occasionally to people you want.  You are becoming consistent in pulling on your ear when you are tired…specifically your left ear (or at least when I see you doing it).  You hold your bottle pretty much on your own. Your menu has expanded a bit but I am not kept current on that…you had some concoction that had chicken in it yesterday.

Unfortunately, and contrary to the doctor’s assumptions, you are still spitting up ALL. FREAKING. DAY.

Other than all of that, life seems to be back to routine…although rumor has it there may be a kitty in your future.

grandpas-girl

Happy 7th-month tiny one.  Keep doing what you are doing.

Love, GranDawn.

 

GrandDawn’s Log: Day 187

OH MY GOSH NATHALIE!!

I totally missed your 6-month milestone, your second quarterly review!   In all fairness to me, only by 4 days.  I might even say that it is your fault.  YOU have been quite the distraction this week.  Perhaps we can place the blame elsewhere… but that would be a long story and I don’t know if you understand the word “interloper” or if you would ever be able to wrap your head around the lackadaisical way the County of Elkhart handles things regarding unwanted “Tenants at Will” but let’s just remember this is the year you spent living at The Grand’s house for the holiday season… yes, you have pretty much been staying with us (your parents too) since Thanksgiving.  In the spirit of the holidays, I am just going to give the review 5 stars and thumbs up!!

The good thing about having you here every day is that I have really gotten to watch you in all your glory and fury.  Yes, you have fury…and it is ADORABLE, but maybe not so much when your parents are trying to sleep.  You are sleeping more during the night but there is no real pattern to your sleep time.  I think this crazy living situation has sort of screwed that up for you.  BLAME THE INTERLOPERS!!  Your daytime naps only seem to average about twenty minutes (unless you count the ones where GrandDawn gets you to sleep). You still demand to be entertained most of the time, which is really unfortunate for whichever parent is in charge of you because that means that a lot of things don’t get done regularly.  I imagine it is really hard on your parents with Dad working a normal(ish) Monday- Friday 9am to 5pm (ish) and then Mom working whatever days 4 – 6 days a week usually at 3pm to 10:30pm.   People who work the same shift can tag team childcare and household chores… but then they need full-time childcare and that cost can be expensive. There is always one sacrifice or another in parenting.  Moving on…

You are SOOOOO close to mastering sitting up (spitting up is something you excel at and may have even earned a degree) and your rolling over is spot on…you have tested out the Downward Dog pose for Yoga and quickly dismissed it as a means for transporting yourself and have opted for simply rolling along the floor toward whatever objects have your attention.

I want to let you know that most babies BABBLE. You, my dear Nathalie, growl and grunt. You are a little weirdo and I love it!  You fell asleep on me the other day and you were even growling in your sleep…followed by smiling in your sleep.  Super. Flipping. Cute.

You have successfully (meaning without showing signs of being allergic) consumed oatmeal, sweet potatoes, peaches, apricots, prunes, apples, bananas – sort of,  combinations of those things, and I believe next on the list is pumpkin or blueberry.  If you show signs of being allergic to pumpkin I will be heartbroken.  AND…your father allowed you to suck on a lemon and you did not make the face one might expect from a baby experiencing a face-puckering citrus fruit for the first time.  I wasn’t there…but I imagine he may have been disappointed.

You have also experienced your first illness… it began right before Christmas and you were feverish and congested and based on the past day or so, I think you are finally getting through it.  I must apologize because odds are that my pneumonia which then became your mom’s pneumonia became your own personal ick… I am so sorry.

nathalie-sick

Your first Christmas has come and gone.I am happy to report that the very first Christmas present you opened was…A UNICORN!!!  I think that your seventh present was a unicorn too…Thank you, Mrs. Jen! A this exact moment you are visiting with Grandma Christine and Grandpa Doug and they brought you SO MUCH STUFF!!!  I hear that you are being a super cute baby for them, and I think you may have a diabolical plan to hide your fury so that they keep bringing you more!  Between all of your grandparents and the extended families, you received quite the HAUL .. Let’s just call it Mount Spoiling and be done.

Finally, let’s talk about the rankings of your favorite people… because you know I was trailing behind GrandFather and Aunt Pixie; however, I do believe that I have lapped them! We have been playing a lot together and I have made you laugh and laugh and GROWL. This past week with you I have had the magical touch in making you fall asleep and for one of your naps you slept for 45 minutes, followed by 30 minutes of snuggling with me and then slept for another 90 MINUTES!!! WOOT!! How do you like me NOW?!?!?   Not to mention, I have found the magic trick to putting you down when you fall asleep in my arms…a good magician does not share their tricks. Unless of course, all of this magic touch is a by-product of your illness.  Whatever…I’m celebrating in the end zone and taking my penalty with glee!

nathalie-six-months

Happy New Year Nathalie!!!

Keep loving me the most.

Love, GrandDawn

 

GrandDawn’s Log: Month 5

Dear Nathalie,

Though you did not realize it, you were present for a couple of very important moments this month.  First, we had to say Goodbye to your mom’s first cat, Ash.  She was an old cat, same age as your momma, but she became senile and she was not living a happy life.  You, however, did not have a care to give about this event based on the picture below:  goodbyeashLook at that, your mom and dad are saying farewell to a heavily sedated cat and you are just living it up!  It’s not your fault, I get it, no one has taught you any manners yet.

Aunt Pixie celebrated her 26th birthday, and you missed it.  It’s okay, we know you don’t have a car or a phone… or the motor skills to operate either of them or the vocabulary to wish someone a Happy Birthday.  Maybe next year.

You also celebrated your first Thanksgiving.  You were completely oblivious to the mountain of food but you were so happy to be surrounded by people.  You were so busy people watching that you hardly noticed that you had a protrusion trying to work its way through your tender little gums.

Yes, you are teething…and it sucks. You live with your hand in your mouth most of the time, but don’t worry – Gramma ordered you a Munch Mitt.  You also like to nom on your blankets so I also ordered you this weird thing called a Terry Teether.  Let’s hope something brings you some relief.

Between teething and the regular waterfall of regurgitated formula that you expel, you are constantly damp. Based on being with you for several days straight,  and the science behind the people at WebMD, I am fairly certain you have GERD.  I have been trying to mentally invent a contraption for you to wear around your head or neck to catch the flow of liquid that regularly escapes your mouth.  A bucket bib per se, but one that has the bucket part right under your chin –  because a regular bib just doesn’t cut the mustard.

Enough with that.  Let’s talk about the cool things you are doing.  You DEFINITELY like squeaky toys and Aunt Pixie someone has threatened to shop the pet aisles for your Christmas toys. You are rolling over onto your tummy and lifting yourself up.  You are showing your future potential as a contortionist by chewing on your feet.  You like to grab the faces of the people within in your grasp (and promptly gauge them with your sharp little nails).  You are experimenting with baby food… you are not keen on the apples but so far sweet potatoes are acceptable – rumor has it that bananas are next on the list and this will be a very intense moment as this is one of the things your father seems to have an allergic reaction to…I will be asking my friends to pray for you later today.  Oh, Miss Nathalie, how I wish you had been born with my iron stomach.  OH, you also seem to enjoy when I cover you in a blanket and slowly pull it off of you, sort of like peek-a-boo but not really. You seem to need constant entertainment; I read somewhere that is a sign of higher intelligence… why couldn’t you just be – nevermind – you’re perfect.

nathalie5months

Keep reaching for your toes Little Miss.  We love you bunches.

Love,

GrandDawn