Posts Tagged ‘Vista’

We have these wonderful things out here called a Chinook.

On Chinook days it will go from “Oh dear gawd I’m going to freeze my nipples off!” to “Hey, is it legal to go topless?” in a matter of a few hours. In terms of actual degrees, think 0C (32F) to 20C (68F). Yeah, radical.

While the sudden warm weather (minus the accompanying migraine ) is a nice change, there are some side effects… muddy, dirty, wet side effects.

Because sudden warm weather melts all that lovely snow that’s been sitting in my backyard. And melts it in a hurry.

Which means my quarter acre winter wonderland turns into a giant lake. A muddy, dirty, wet lake that two dogs and a toddler want to go play in. (and if you ever come over to my house you’ll understand why my floors are perpetually muddy in the spring).

With this latest thaw, and the fact the dogs have worn out the grass at the bottom of the deck, there’s a nice mud… well it’s not a puddle because there’s no water.  It’s just a big mud pit.

When Vista wanted to go out this afternoon, I first had to get her over the “Oh no!  Oh no, Mommy!  Mud!!”.  And then… well, it’s easier just to show you what happened next.

Needless to say, Bil is picking up some paving stones for that bottom area on his way home

Sometimes I feel like, as a mom, I have these wonderful, magical powers.

Have a boo-boo?  One kiss from my lips makes it feel all better.

Crying over spilt milk?  One hug with my arms wrapped around you makes it feel all better.

Scratches, scrapes, hurt feelings, and insecurities are no match for my mommy powers.

But right now we’re battling sometime that can’t be fixed.

Vista’s brain.

Would it be ironic to say that it has a mind of it’s own?

Because some days it really feels that way.

We finally got her EEG booked for March 9th.  Yeah, a month away.  This will be her third and that’s 3 too many.  Believe it or not, out of all the tests she’s had in her life, these EEG’s are the worst, because it involves me holding her down while she screams and cries and screams as they attach the electrodes to her head.  After getting her all worked up, I have to calm her down enough to fall asleep.  And after sleeping for 10 minutes or less, I get to wake her up.  I end up going home after them and crying as Vista clings to Bil wanting nothing to do with me.  And I can’t blame her.  I wouldn’t like me much either after all that.

But what’s the most frustrating is that I know the test will come back normal.  Just like the last two.  So I have to put her through all that for nothing.  Or rather, so we can see the neurologists so they can tell us “Yep, everything still looks OK, other than her normal brain malformations.  We don’t know why she’s seizuring or why she regressed so much after her last seizure.”

Did I mention being a mom also makes you a psychic?

I had a long talk with Vista’s Speech and Language Pathologist yesterday as she put V through her paces.  She’s confirmed for me that it’s not uncommon for people to regress after every seizure.  It’s just something that is.  And will be forever.  As in, when she’s an adult and has a seizure, she will experience loss of skills.

I watched, as we talked, as Vista struggled with a toy that a month ago had been a breeze for her to play with it.  A toy whose ins and outs she had mastered.  Now, it’s like she’s seeing it for the first time.

It makes me sad for her.  It makes me frustrated for her.  It makes me angry for her.

And Vista is all of those things right now as she struggles to make herself understood.  She went from being a toddler who was well on her way to being at a normal speech level.  She was talking in sentences.  She was easy and clear to understand.

Now our days are filled with “I’m sorry, sweetie, I don’t know what you’re saying” and she screams the same garbled words at me over and over hoping that volume will make me get what she is trying so hard to communicate.  Words that only weeks ago, I understood perfectly.

How do you explain to a two year old that half of what she’s trying to say is now reduced to babble sounds?  You can’t.   How do you explain that even though she was able to open that door a few weeks ago, it’s going to take some time for her to learn how to do that again?

So the next couple of months will be spent trying to return her words and motor skills to her.  And trying to manage the frustration and anger, both hers and ours.

I’m hoping one day we’ll learn this dance.  One step forward, two steps back, side shuffle, side shuffle. This stumbling along, trying to figure out what comes next is making my brain and heart hurt.

My Follow Friday post was bumped when Vista got scheduled for an early Friday morning CT scan, late Thursday afternoon. This came about after talking to our family doctor about some regression we were seeing since her last seizure. Apparently regression can be a sign of a stroke, so they wanted a scan to make sure that wasn’t the case (and it’s not… the scan is fine as far as we know). Now we’re just waiting for them to schedule an EEG for her, which, I can tell you right now, will also come back normal.

As we pulled up to the hospital Friday morning, though, Vista chirped from the back seat “Oh! The hospital. We go see doctor?”

My heart broke a little. No two year old should recognize the hospital from the outside of the building. No child should know that pulling up to a hospital means a doctor is involved.

And it made me think of all the reasons she’s been to the hospital and all the different doctors we’ve seen there in the past two and half years.

Some of those reasons have been as a result of her brain issues. But a lot have been because she was born to early and the fact that her system just wasn’t developed enough to handle all the things it needed to.

And so this Follow Friday is dedicated to Heather’s Maddie, who was also born to soon. And it’s dedicated to my friends who are walking in Maddie’s memory to raise money for the March of Dimes, so that one day no child will have to deal with endless doctors visits because of complications from prematurity.

• Messponential - I love Colleen. Her and I talk almost every day, even though we live a country and two time zones apart.  I cried when she told me that this year she’s not only marching for Maddie, but for Vista as well.  If you’d like to support Colleen in her walk, too, you can  click here.
• Adil320 - Ally is one of my roomies for BlogHer this year.  I’m also dragging her to get inked with me while I’m down there (just don’t tell her husband that I’m a bad influence, kai?).  In addition to Maddie, Ally is also marching for her close friend’s baby girl, Natalie Diana, who was born at 31 weeks.  You can read more about why Ally’s marching, and support her, on her March for Babies page
• Mom2snk - Meredith and I first met through our husbands (yes, we’re both SharePoint widows).  And in a weird, 6 degrees of separation twist, found out she’s also friends with Colleen.  She’ll be joining Colleen on April 24th in for the Jacksonville Friends of Maddie

If you make one $5 donation this year, I would encourage you to consider the March of Dimes.

Those of you that follow me on Twitter have probably heard about Sam.

Sam is Vista’s special friend.  And we’re pretty sure he’s a ghost.  Yeah, I’m living in a real life haunted house.

I can remember vividly the first time Sam showed up.  We we all  sitting in the living room and all  of the sudden Vista started to talk to ‘Sam’.  Sam was apparently standing right behind me as I sat on the couch *shudder*.   Vista was happily chattering to him and trying to hand him things.

Bil and I just looked at each other.  And decided she had an imaginary friend.  How nice for her.

But on the off chance, I called my mom and asked her if the name ‘Sam’ rang any bells for her.  As we ran through the family roster of the dead we came up blank.

I was still clinging tightly to the fact that this was an imaginary friend.  Perhaps, I reasoned, she’s talking about Sam from the Wiggles.  She loved watching the Wiggles at that point.  Perhaps she had just picked that name.  So, I put the Wiggles show on and when Sam showed up, I pointed to the TV and said “Look!  Sam!  Is that your Sam?”

I’m pretty sure Vista is going to be really good at that ‘OMG you are a complete moron’ look when she’s a teenager, because she threw that look at me and slowly explained to her idiot mother “Sam on TV,” pointing to the tele.  “Not Sam,” pointing to the other end of the room.

Well, fine.  Nix that idea.  But, I still wasn’t giving up on the imaginary friend idea.

Until the morning I went to get Vista dressed.  I conversationally asked her “Where’s Sam?”

She pointed to the floor next to her.

“Oh, he’s sitting next to you?” I said, very pleased with my deductive reasoning skills.

I got the ‘you’re an idiot’ look again and she patiently explained “No.  In ground…. buried there.”

I have to tell you, hearing your two year old tell you about someone being buried in the ground (they certainly don’t teach that on Dora or Sesame Street) is kind of a conversation killer.

So I changed gears.  Fine, Sam probably wasn’t just an imaginary friend if he’s buried in the ground.  So we played 20 questions with a 2 year old with limited vocabulary.

Q: Is Sam a boy or a girl?

A: Boy

Q: Is Sam a little boy like [cousin] or is he old like Daddy?

A: Like Daddy

Q:  Is he old like Grandpa or just old like Daddy?

A: Old like Daddy.

Alright, so we had a male ghost, somewhere in the 20 – 50 age range.

Q: Is he wearing a hat?

A: No.  He…  *at this point she started point to her forehead*

Q: Does he have an owie on his head?  A bandaid?

A: No…  *it took a few days, but we finally figured out that Vista was trying to tell us he was wearing a headband of some sort, after she started wearing insisting on wearing her hairbands around her forehead rather than to hold her hair back*

We continued playing these games.  Showing pictures, asking questions, guessing answers.  Near as we can tell, Sam is an adult male, Native American, ghost… who likes to swear.

Oh, did I forget that part?

Yeah, I came in one day to get Vista up from a nap and she was happily chattering to Sam.  And they were talking about ’sunny beaches’

I sent Vista out of the room to go play in the living room, and turned to (where I thought) Sam was.  I gently explained to him ‘Listen here you son of a bitch.  You teach my daughter to fucking swear and I will exorcise your ghosty ass.  Are we clear?’

I’m assuming he got the message, because there’s been no more mention of sunny beaches or any beaches for that matter.

But then, a few months ago, Sam went away suddenly.  Vista explained he had gone to the mountains for a while.  I smiled and nodded like this made sense and figured maybe we were rid of our ghost for good.  Not that I really minded him.  I mean, he seemed to be friendly enough.  And Vista certainly enjoyed talking to him.  On days when he would chat with her as she woke up from a nap I could here fits of giggles.  But still.  A haunted house really doesn’t draw friends to want to come over for coffee.

Months went by, and no Sam.  Until about a week ago.

Vista woke up and started talking about Sam again.  I figured, not a big deal.  So he’s back.  Good for him.

But, something’s changed.  Or rather he’s changed.  He seems to want to be more helpful.  Which is nice… but, dude, it’s creeping me the fuck out.

The first incident was the other day when Vista and I were in the living room.  She was dancing around and I said “Should mommy put some music on so you can dance?”

As soon as I said that the DVD player turned on.  Now, that, in and of itself, I could ignore.  But we have one of those fancy players that also acts as a radio tuner and you can hook your ipod into it.  We have never use the radio part (because the reception is crap and while I’m pretty sure there’s something we could do to fix that, we’ve never bothered and just don’t use it), and very rarely use the ipod dock, so it’s always set to play DVDs.  Except when it turned on, it was set to a radio station playing music.

OK, I must have sat on the remote or something and accidentally turned it on.

Except when I stood up to look, I saw the remote sitting across the room from Vista and I.

I looked at V.  “Where’s Sam?”

“He just went outside”

“Yeah I bet he did.  Tell ghosty boy to quit touching Mommy’s technology”

I walked over and shut the DVD player off.  I wasn’t in the mood for dancing anymore.

Then the other day, I went to put Vista down for a nap.  She laid down in her crib and I was tucking her in asking her if she wanted me to put her white noise machine on for her… when her Winnie the Pooh music box turned on by itself.  Neither Vista nor I were anywhere near it.  And not only that, it’s not a little push button switch to turn on, that I could have hit accidentally this time.  It’s a slider.  And to put it on the song and setting that it was on the slider has to be slid down from it’s off position at the top, alllllll the way down to the bottom position.

I turned it off.

“Where’s Sam?”

She pointed to the end of her crib.

“Could you tell him to stop doing stuff like that please.  It’s creeping Mama out.”

I got a nod from her.  I finished tucking her in and let her sleep.

Oh, but the best was yet to come.

This morning I woke up to hear Vista chattering through the baby monitor (Yes, she’s 2.5 and we still use a baby monitor.  Don’t judge).

I looked at the clock.  7:00am.  Bil would have gone to work a few hours ago.  So it was time to get up and grab a quick shower before I went in to get her.

Until I heard a male voice respond to one of Vista’s chattering questions.

A voice that I didn’t recognize.

A voice that certainly wasn’t her father’s.

I went racing out of my room and threw open her door…. only to find her alone in her crib.  With no one else in the room.

“Hi Mama!”

“Hi baby.  Who were you talking to just now?”

“Sam….and my dollies”

Holy fuck.  Had I just heard her ghost over the baby monitor???  Are you fucking kidding me??

I’ve come to the conclusion we have one of two things going on here.

Either

1. Vista has a friendly ghost who watches over her and likes to make sure she’s happy.  And who now seems to be able to turn on things in the house and make himself heard…..or
2. I’m loosing my ever living fucking mind

I’m kinda leaning towards number two.

Just a quick Vista update for those who care.

So… we had an appoint with our family doctor on Monday to talk about Vista’s inhalers and I also wanted to talk to him about some of her specialist flagging some of her behaviors as autism markers.

Visiting Dr.F is always interesting. First of all he is the ONLY doctor that Vista likes. She will let him check her, and even pick her up, with no screaming and crying. And then there’s the fact that Dr.F totally think the sun rises and sets with Vista. You see, she was his very first patient in his practice (in fact before he even had a practice). He was her doctor when she was in the Special Care Nursery (a step down from NICU), when she was born. And so he’s always taken a special interest in her.

I love the fact that she’s so relaxed with him. It makes a visit to the doctor so much easier. And I also like the fact that I feel like he listens to me and doesn’t dismiss me as a neurotic mother. That’s a rare and valuable quality in a doctor these days.

The first thing we discussed were her inhalers. And the fact that, yes, the doc at urgent care had prescribed her an inhaler that was way above her age range (thank you Dr. Lori for bringing that to my attention).  We confirmed that she doesn’t need to be on inhalers full time, but when she gets a cold, she’ll go on them for a week or two to keep her airways open.  I’m happy with that arrangement and it seems to work for Vista.

Then we talked about some of the autism makers we’re seeing.  Stuff like lining up toys, counting things over and over and over, and other OCD quirks she has.  He agreed that it was probably time to get her in for a formal screening, so he’s made a referral to the Children’s Hospital in the city.  He’s not overly concerned, especially because he’s thrilled with where she is with talking and walking in light of her brain issues.  He said  that any autism she may have would be mild and it may just be her quirky self.

Before we left, I asked him if he had received a call from Children’s Services back in December.  Surprise, surprise, they didn’t call him either.  That’s 3 names I gave them and they called none of them.  Unreal.  I still have to check with Vista’s pediatrician to see if they talked to him.  What I found interesting is Dr.F guessed within 2 seconds of hearing my story who it was that had reported me.  He’s asked me to gather some information about the CS investigation and pass it on to him and then he is going to file a formal complaint against the pharmacy (and pharmacist) who filed the report with CS.  I’m apparently not the only person who has had problems with that pharmacy.

I have to say, I came away from this appointment feeling good about where things are and very supported.  Having a good doctor, when you have a child with issues, can really make such a huge difference.

As we were walking out of the office, we ran into Dr.F’s wife who had brought him some coffee.  The Dr introduced us and his wife immediately looked at Vista and said “Oh!  Is this Vista Avalon?”.   I must have had a “how the fuck do you know my daughter’s middle name” look on my face because she started laughing and explained that Dr. F talks about Vista all the time and they both just love her name, so it’s always stuck with her.  Huh.

The biggest surprise of the whole visit, though, came with Vista gave Dr. F a hug before we left.  And not just one of her ‘I’ll sort of lean into you and let you touch me’ hugs.   I’m talking about an arms around his neck, squeezing hug.  Apparently even she knows a good doctor when  she sees one.

I’m beginning to realize that last winter we really lucked out.

Vista was for the most part healthy and didn’t come down with a lot of colds or sickness.

This year… *sigh*  Is a different story.

As soon as she gets over one cold, we get a week off before she starts getting  sick again.

Bil and I are so over it.

The whining,  the hysterics every time she sneezes, the being up all night because her nose is runny and that is an absolute crisis in her world.

And with every round of being sick has come a round of croup.  Except I don’t think it’s croup.  I think  it’s the start of asthma.

So with this latest round of sickness she’s back on inhalers.

There are a few things you learn very quickly when you have a child who is chronically ill.  That is to trust your instincts, trust that you know your child better than any doctor, and that doctors are not infallible.

I spend a large part of my days, when something new comes up, reading medical journals online.  Researching, cross referencing, eliminating possibilities.

When Vista was little, and her doctors insisted that she was fine and just slow to develop because she was a preemie, this research got them to agree to do an MRI (against their better judgment – they were just humoring me, you understand).   But mother’s instinct didn’t fail me and the doctors were shocked when her scan revealed a brain malformation and missing pieces.

And when I suggested when she was only 3 months old, that she might have a milk allergy, which was summarily dismissed by all her doctors… well, I should have listened to my mother’s instinct then.  By the time she was a year old, her GI specialist grudgingly agreed that she might have an *mild intolerance*.  Months of food diaries and elimination diets revealed a severe milk allergy.  Bad enough that she couldn’t even eat beef and a kiss on the cheek from someone who had just had a drink of coffee with creamer in it would leave an angry red mark on her skin.

Now I’m preparing  to do battle on the asthma front.

This time I have my own experience to draw from, though.

As a kid, I was diagnosed with croup over and over.

I had chronic bronchial infections.  There were years I was on antibiotics 11 months out of the year.

But it wasn’t until I was a teenager that a doctor finally shook his head, handed me an inhaler, and sent me for asthma testing, which confirmed  the diagnosis.

See, the problem was, even in the midst of an asthma attack, I don’t get the tell tale bronchial spasms that are what most doctors use to diagnose asthma.

After Vista’s coughing attack at Christmas that left her breathless and blue, we found out she doesn’t get bronchial spasms either. But the attack she had was a carbon copy of what my asthma attacks used to be like.

So, now, once again I am researching, reading, and preparing to make my case before the judge doctor.

I have a few more posts coming in my relationship series, but I need to put them aside for a bit while I figure out how to proceed.  Like I said earlier, the posts aren’t writing themselves, like I’m used to, and with V being sick I simply can’t focus like I need to on such a touchy topic.  So you guys will just have to suck it up and wait.  Bloggers prerogative and all that.  Sorry.

So, Christmas.

Yeah… that was interesting.

We did end up successfully doing our 12 days of Christmas with Vista.  It worked well and allowed her time to process each toy.

We still had a few presents on Christmas morning and then her stocking.  That took 3 hours to open everything, but we let her go at her own speed.  Even that, though, was too overwhelming and she was pretty much in constant meltdown from noon on Christmas day on.  By the time she went to bed that night Bil and I were completely done in.  In a serious way.  I think next year we might just skip Christmas day, altogether.

The 26th we briefly considered hitting the Boxing Day sales, then came to our senses.

Bil’s assesment of the day ahead:

He was kidding…. I think…

After spending the morning dealing with cranky mccranky pants (aka our daughter) we figured the sooner we headed over to my parents the sooner we could make them look after her and we could sit and have a break.  Cause we’re awesome parental units like that.  So, we packed up the big pickup truck *cough* rednecks *cough* and hit the highway.

Vista had a bit of a cold and cough and we had another croup flare up in the days before Christmas.  We decided we would take her into our family doc in the new year as this is her 3rd go round with ‘croup’ in a month in a half.  Vista, however, had a different plan.

As we left our house to make the hour drive to my parents house when Vista started coughing…and coughing… and coughing… and oh fuck… she can’t catch her breath.  Do we pull over and call an ambulance or gun it to the nearest medical facility?  We veered off the highway and took the back roads the Urgent Care facility in the next town.

As we rushed from the truck into the medical center, Vista’s cough had slowed enough that she was at least not blue tinged anymore.  I had flashbacks to my own experiences with croup as a child.  These coughing attacks were eventually diagnosed as my signature asthma attack.  Yay genes.

And we walked into see a huge line of people.  Crap.  The debate.  Head back to the hospital ER in our town, stay here, or take her into the Children’s hospital in the city.  We decided to take our chances and wait it out here. I called my mom and told her we’d probably be a bit late for dinner.

However, when you walk in with a coughing child with dropping pulse-ox stats a funny thing happens.  You get bumped to the front of the line and get to see a doctor right away.  Two inhalers and instructions to follow up with our family doctor later and we were on our way again.  So much for making it through the holidays without a visit to emergency.  Vista is nothing if not consistent.

When we finally got to my parents house, my dad took Vista and my mom went and made me a stiff drink.  Because there are some days when it’s required and my mom, for all her quirks, gets that.

My youngest brother and his wife finally arrived with my nephew (how we can come from an hour away AND stop at emerg and still get to my parents house ahead of them when they live in the same neighborhood as my parents, I’ll never understand).  I had the sad realization that my nephew who’s now a year and half old isn’t a baby anymore.  *sniff*  He’s completely lost that cute, chubby, baby look and marched straight into toddlerhood.  I told my SIL that she needed to get with the program and have another baby for me to cuddle.   Because, really,  we all know it’s always all about me.

After required snuggles, we let the kids open their presents from Grandma and Grandpa (or Manna and Putta as Vista prefers to call them.  We’ve tried to correct that.  And she can say it properly.  But she’s adamant about those names.  *shrug*).  Can we say spoiled?  I think my parents went and won the lottery and forgot to tell us.  They even got Vista a gift certificate to the high end shoe store where we have to get her footwear, so her next pair of shoes are completely paid for.  Yeah, I may have teared up a bit over a gift certificate to a shoe store.  Just proves that I’m sensitive.

Heading back home in a semi-turkey induced-coma, we had to pull off on the highway again after V had another coughing / asthma attack.  Nothing wakes you up and gets your adrenaline pumping like your kid having trouble breathing.  Thank goodness for rescue inhalers.  But since then, she’s been good and we haven’t needed to use it at all. So, yay the inhalers are working.  Boo that they’re probably working because she has asthma.

All in all a good Christmas.  But really?  I am SO ready for a holiday now.

I’ll leave you with this daily dose of cuteness… Vista the ballerina (oh, and yes, she insists on wearing a toque in the house at all times.  And usually mittens too.  We got her to take off the mittens to open presents, but the toque?  Not a chance.  I promise you, we keep the heat on in the house.  Really.)

Milestones. As parents we watch with eagle eyes for our kids to meet these imaginary deadlines. Rolling over, crawling, walking, talking.

Even though Vista missed her milestones for motor skills (we ended up having to teach her how to roll over and crawl at 14mths) the one that always really concerned us was speech.

The ability to communicate trumps all.

Without this we don’t know if they are hungry, tired, hurt, what they want to play with, what they want from us.

We realized early speech was going to be an issue when at 10 mths she wasn’t chattering and babbling like most kids. Could it have just been that she was a quite child? Perhaps, but parents instinct told us probably not.

We evaluated our options.

We could do nothing and wait and see. We could take her into speech therapy.

We chose option 3. We taught her sign language.

Like any good geeks, we turned to the interwebs for advice, reviews, and inspiration.

We picked up a few recommended baby signs books and had… well lets face it, no success what so ever.

We ended up stumbling onto Signing Time purely by accident and with nothing to lose we picked up the the two Baby Signing Time DVD’s they had. They worked wonders for us. We learned, she learned, and we were able to have, well, if not conversations, at least interaction. Within a week she was able to tell us she wanted a bottle, that she wanted more, and she would point to the puppies and sign ‘dog’ enthusiastically.

As Vista got older, she picked up more signs, we picked up more signs. All her doctors and workers agreed that it was a very good thing that we had made the decision to teach her to sign. Without it we would have had a very frustrated child on our hands.

I’ve been see a lot of posts lately from parents who’s kids seem to be taking their own time learning to talk. I always encourage parents to explore their options in a case like that. Signing may not be right for you and your kids. It does take a level of commitment on the part of parents to learn the signs themselves and use them consistently. If you’re willing to do that, you can open a whole new world and you get to learn a second language.

At 2.5yrs now, Vista is a non-stop talker. But when she’s tired, having problems making herself understood, or just feeling shy, she still reverts to signing. We will forever be thankful that we discovered Signing Time.  It has been a sanity saver in our house.

*no part of this post was sponsored, supported, or anything other than just my opinion of what worked for Vista.  YMMV*

When you see my child having a complete throw-down temper tantrum in the store, please don’t assume she’s just spoiled and throwing a fit because I won’t buy her something.

When you see my child crying and me standing there not comforting her, please don’t assume it’s because I’m an unfeeling parent.

When you see my child sitting in a restaurant watching a DVD player or playing with an iTouch with headphones in her hears as she watches videos, please don’t assume we are bad parents who sit our child in front of the TV all day.

When you see my child walking through the mall with a backpack leash on, please don’t assume it’s because I’m a lazy parent who can’t control my toddler.

We live in a reality very different from yours.

A store with lots of smells and noise quickly causes sensory overload for my daughter.  She screams and yells and lashes out and throws herself at me because she has no other way of dealing with her overwhelmed senses.

When she is crying and upset, sometimes it is also because of sensory overload.  For me to pick her up, touch her, comfort her with words, would just add to the sensory stimulation and make the situation worse.  So I stand next to her.  Not touch her.  Not saying anything.  And wait for her to start to calm.  Then I quickly try to refocus her attention on something pleasant for her.

You may see me at this point hand her the iTouch.  It’s not because I don’t want to deal with her.  It’s because after two years of trial and error, we have found an iTouch loaded with coloring / counting / alphabet games and her favorite videos is an effective escape for her.  She is able to focus on it and shut out the external sensory stimulation and therefore calm herself.

A restaurant with loud background music, people talking, weird lighting, is especially overstimulating.  Without a DVD or iTouch to block the sounds and sights, we have less than 5 minutes before you will she her with hands over her ears screaming “TOO LOUD!” over and over.  Then she will start yelling and signing “All done.  All done!”.  Her way of letting us know she needs to get out of that situation and it is too much for her.  Yes, we could lock ourselves in our house and never take her out to a restaurant.  But we want to experience things in her way.  So we choose to use distractions to allow us all to enjoy a meal out without disturbing the other patrons.

And when you see us walking with Vista and she has her backpack leash on it’s not because we have no control over her.  Exactly the opposite.  But to hold our hands in a mall setting is too overstimulating.  The sights, sounds, lights plus the added sensation of touch is too much.  So we use the leash instead.  The clasps on the backpack that go across her chest and hold it tight to her back, also act as a compression which helps calm and focus her.

So the next time you see my child, any child, acting out; the next time you see parents who are not parenting the way you think they should; stop and consider.  What is going on behind the scenes that you have no information on.  Just because kids look normal, doesn’t mean they live in the same world you do.

I don’t know anything about your life.  Please don’t assume you know anything about mine from seeing one two minute interaction with my child.

I’ve touched on Vista’s birth story a few times on here.

At 4 weeks early, she was considered a preemie.

We spent only a week and a half with her in NICU / Special Care Nursery.

That week and a half was one of the worst of my life.

That’s Vista in the Special Care Nursery.

That mass you see at the top of her head is an IV.  No parent should have to see their newborn with an IV in her head.  V had several of them over a couple of weeks.  Two years later her head is still sensitive in the spots where the IV’s were.

Every day, a few times a day, they would come in and prick her foot to draw blood.  Seeing your new baby screaming all you want to do as a mother is pick up your child and comfort them.  But I couldn’t.  I got to hold her for 30 minutes every 3 hours.  That’s it.  Because her bilirubin levels (the jaundice indicator) were at critical levels she had to remain on her bili-bed with extra phototherapy lights.

Not being able to hold and cuddle your newborn?  Sucks the big one.

There are many issues that come with having a newborn.  Vista had a terrible time learning how to latch onto a bottle (breastfeeding was right out).  Because of her under-developed nervous system she would stop breathing occasionally. Let me tell you, watching your child turn blue is beyond scary. Then there’s also the residual effects.  She continues to have stomach issues and sensory disorders.  She’s also more at risk for respiratory issues. Those are things we may always have to deal with.

What we went through is minor though.  There are many parents who spend weeks and even months in the NICU with their newborns because of premature birth.

November is Prematurity Awareness Month. Prematurity is the #1 killer of newborns.  It’s my dream that one day no parent will have to know the stress and fear that comes with having a baby in the NICU.  It’s my dream that one day no parent will know the pain of the loss of a child due to prematurity complications.  And that one day, no child will suffer the effects of prematurity for the rest of their lives.

Today I’m joining the March of Dimes Fight For Preemies, so that maybe one day all parents can bring their newborn babies home, healthy and happy.