I loved her...or love her...how do I say it now?

I sort of don't remember when we reconnected.  The power of facebook I guess.  We became myspace friends first and then facebook friends...and then we met for coffee one day...and then she needed a highchair and I had one for her to borrow.  So she came over and then I needed a walking partner and she wanted to walk and so we started walking...and on that first walk with our kids, which was supposed to be for an hour ~ She didn't leave until after 8 pm.  And it was on that day that we declared ourselves Soul Sisters. 

We were friends in middle school and in high school.  We lost touch somewhere after that...kept track of each other through friends of friends.  We led our own lives.  Made other friends.  Had our children.

And then something brought us back together.

We quickly became inseparable.  Talking every day...texting continuously throughout the day...walking 3 to 4 times a week.  We made everyone crazy because our "walks" never ended.  Quickly we began feeding the kids lunch together, swimming after the walks, having the kids play for hours on end. 

We had so much in common.  Both of our oldest were 15, then we each had 2 smaller ones.  She accepted Hailey for exactly who she was.  She never expected me to come to her house and always just understood that it was hard for me to visit other people's houses with Hailey. 

She was one of very few people who accepted me for the person who I was.  She loved me despite of the fact that you could eat off my floor.  She loved me despite the fact that I would freak out if we ate after 7 pm.  She loved me despite the fact that I was OCD about everything. 

She was a mildly flaky...but would never flake on me.  She knew I hated it and she would call as soon as she was going to be late (which was every time) and would tell me how late she would be.

She loved me and I loved her.  I am lucky because I told her all the time and she told me all the time.  She called me doll constantly and reminded me that I was strong enough to handle anything. 

She encouraged me to write and knew how much I loved it.  She encouraged me in everything.  She gave me more credit than I deserved most of the time.

I loved her...love her...I'm not sure how to say it anymore.  Past tense seems so odd.  I know that my head knows she is gone...I am just not sure that my heart knows it yet.  I called her voicemail today.  I think that it was on accident but maybe it was on purpose, who knows.  It was awful...just a reminder that she would never again pick up.

My Best Friend loved her children with all of her heart.  She lived her life with happiness and love.  She could light up a room and cheer up anyone. 

I miss you Tracey...with all of my heart. 

Please watch over us. 

Thinking Positive While Accepting The Negative

My beautiful little lady was discharged from the hospital on Tuesday night. It was a very long six days that I never want to have to repeat. I kept thinking the entire time that they were letting us go home how excited I was to leave and get back home…and at the same time, how scared I was that I wasn’t going to have a nurse’s call button to call them if she pulled out the tube or if I couldn’t get the tape on right or if I couldn’t hear the sound of her tummy before I fed her or if the tube was clogged from all of the medication.
I mean really…NO CALL BUTTON??? The thought was terrifying. But now we have been home for 2 whole nights and 2 whole days and to tell you the truth, it is fine.

Yes, I am feeding her every 2 & ½ hours, 7 times a day and each feeding takes 45 minutes. Yes, I am actually feeding her about 6 hours total out of every day. Yes, I am having to get up at 4:30 in the morning so that I can get a shower and get ready to start the day before her first feeding. Yes, I am having to feed her while she sleeps at 9:00 at night. Yes, she is still vomiting a little. Yes, she is crying because I won’t let her eat any of her favorite snacks. Yes, dinner time is excruciating…so much so that my fifteen year old is refusing to eat at the table if Hailey can’t eat. Yes, I am having to wipe her drool every 32 seconds and apply Vaseline and even change her diapers again.

Yes, it is horrible for her and for me and for our family…Mostly for her though.

But also, I am learning that I can do it. I have still handled all of the laundry including all of the extra laundry from vomiting and accidents and drooling. I have still gotten all of the bills paid and still drove my four year old to pre school. I am learning that my hubby is really helpful if I give him tasks…So he has picked up all of the prescriptions and picked up the preschooler and he is handling cooking dinner for a while. But for the most part, it is fine. It isn’t ideal but I can handle this…We can handle this.

I would like to think that there is a light at the end of the tunnel. And I am trying to keep hope that there is going to be an end to this and that she will regain the ability to swallow and eat. But honestly, I think that I need to just come to terms with this. I can’t keep saying in my head, this is only for 30 days or this is only for a few months or this will all be over in 6 months at most…because that is not for sure. I think that I just need to think, this is how things are…so that I can accept the situation and we can deal with it and make it part of our lives. It’s just like telling her that she can eat when she is better…One of the nurses told her that…But in reality, she feels fine now…besides the swallowing. I don’t want her to get the idea that now that she feels better, she can now eat. That will just frustrate her more.

So I am trying to think positive while accepting the negative. It is a tricky thing to do…and not one that I am very good at.

Weird things you learn

Things that I have learned in no particular order...

The elevators around the corner go much slower than the ones next to the nurses station.
The door to the cafeteria sticks a little bit.
Some nurses are nicer than others.
On call doctors don't normally review the chart before they walk in and start acting like they know everything.
Making on call doctors feel stupid is pretty fun.
My daughter laughs hysterically when my husband pretends like he is crawling into the baby crib in the hospital room...even if she is hooked up to every machine imaginable.
My sister would come through for me no matter what she needed to rearrange in her own life.
My youngest daughter has no problem being away from me for 4 days and counting...She views it as an extended sleepover.
My mother is as strong as a rock...I am pretty sure she only cries when no one is looking.
When everything is falling around me, all I want is my mommy.
When Hailey's feeling sick, all she wants is her mommy (oh and maybe some food).
My husband gives the best hospital foot massages on the face of the planet.
Cafeteria food is gross.
When I get really tired, my eyes start to cross but if I splash water on my face they go back to normal.
Hailey is embarrassed about the tube in her nose but not about showing her friends where the milk goes or how she eats.
A situation like this has a way of making the casualties and enemies created by a nasty divorce heal their wounds so that they can be in the same hospital room together to love the same child.
Seeing your child drown on an xray and video study at the same time is not something that I can handle.
Falling apart is best done in the corner of the bathroom so that Hailey can't hear me cry.
Hailey thinks that she is the Queen in this hospital bed (I am thinking about getting her a crown & a bell...bossy little thing!)
Mommy instinct is a very powerful thing and I should never let a doctor or anyone else make me doubt my mommy instinct.
The floor squeaks next to the NICU doors.
The bathroom near the parent center is big enough for me to take Hailey and her wheelchair in with me.
The nurses will let me take her outside on walks in her wheelchair if they don't "see" me.
My son is amazing and independent.
I have wonderful friends who would do anything to help us.
Paloma is the best medicine for me.
Hysterical laughter is really good for bringing on the sobbing...(note to self...no more hysterical laughter!)
If I ask my husband to bring me whiskey and a corona (as a joke) he really will...complete with styrofoam cups (yep he did!  It was pretty funny...I made him take it home...well I drank the corona...but Paloma helped me!)

This SUCKS!!!

I need to write but my head is so tired and swimming that I am jumping all over the place so please forgive this jumbled blog.

Sisters in the hospital bed

Hailey is in the hospital. She is ten.  She has a genetic disorder, a genetic deletion, 5 p minus, cri du chat, a break in the 5th chromosome...whatever way you want to say it.  But she has never been admitted to the hospital.

Everyone needs a salon day in the hospital

Having an auntie as a hair dresser is the best

This is the first time.

There have been outpatient procedures and doctor's visits.  There have been a handful of ER visits.

But never an admit.  Never have they kept her here and hooked her up to all of these machines and made her sleep in a hospital bed.

Did I mention that she doesn't do well out of her regular environment?  So on a good day, being here just sucks.

There is nothing really good I can say about it.

So she hadn't eaten since Sunday night and they thought it was just a sore throat and that she would get better...Keep trying to feed her, that's what they said.  But she seemed like she was drowning in her own food and I kept calling the doctors and telling them that but nope, they said wait it out...It will be fine.  By Wednesday I was in a panic and insisted on an appointment so they had her come in Thursday morning and suddenly she was admitted.

And Baby has to have a feeding tube too...

So that's it.  Here we are.  After a modified barium swallow test where she was aspirating every type of texture, they put in the ng tube.  Then came the fever, which miraculously went away with no explanation.  Then came the plugged tube and the vomiting this evening.

I hate this place.

I hate that they want to send us home in the next day or so but she hasn't even had a successful 4 hours string of time.

I hate that I had to beg them to see her and I hate how much I wanted to be wrong but I wasn't. 

I hate being right some times.

I hate that I keep crying and that I have been sneaking to the bathroom every few hours to sit on the floor and sob.

I hate cri du chat.  I hate swallowing problems.  I hate feeding difficulties.  I hate this disorder.  I hate this place.

Funny that people say hate is a strong word and you need to be careful using it.  Well I am being careful.  I hate all of this.

I will do it because I have no choice.  I don't get to say, "oh no thank you...I won't be handling this".  I don't get to say, "oh I can't deal with this".  I have to do it because I love her and she is counting on me to handle this.  She is counting on me to get her through this. 

So I have to limit my sobbing to the corner of the bathroom.  I have to feed her through a tube even though it scares the shit out of me. 

I have to be strong enough to handle the things that I hate because my love for her is stronger than anything else.

Sleepy Sleepy SleeZZZZZZZ

Hailey didn't sleep well from age 4 to age 8 or so.  She was up from about 10 or 11 to 2 am every night. It sucked.  I don't remember how I functioned on a daily basis at all.  At that same time, I was also working 80 to 90 hours a week.  I swear I have no idea how I survived.  It never really phased her though.  She never seemed exhausted.  She was almost more hyped up the less she slept.

Just before she turned 9, we took her into the neurologist to talk about behavioral medications.  He chose a medication that also helped with sleeping so it was a bonus.  The medication helped a lot of the aggressive behaviors and also helped her sleep through the night.  So she's been sleeping through the night for over a year now...And so have I!

Well about 2 weeks ago, we had to take her off of all of her medication to try and determine what was giving her muscle spasms.  Turns out, it was her behavioral medications and we chose to try a different medication. This medication does not help as much with sleeping. 

So Hailey hasn't really slept through the night in over a week.  It is awful.  I had forgotten how awful.

She falls asleep around 8:00 or so and then wakes up at about 10:30.  She rocks on her bed back and forth for about 1/2 hour and then wakes up completely until about 2 am.  Usually she will just play and I will be sitting in the hallway or checking on her every 15 minutes or so.

Well last night was something new...She woke up around 10:30 and I guess she had decided that she had slept enough and it was time to start her day.

She was so insistent that we needed to wake up her sister and have her breakfast and get dressed and then drive to school.  When I tried to explain to her that it was the middle of the night, she was so ANGRY!  She just could not grasp the concept that it was still sleeping time.

After speaking with the on call doctor, he suggested that I give her some benadryl for the night and then we would discuss different options with her neuro in the morning.  So I did that and she finally fell asleep around 2 am.

So today, I am exhausted...literally exhausted.  I really don't think that I can handle this up all night thing again.  I really really hope that we can get it back under control.

On the flip side, she had the best day she's had in a long time.  She smiled most of the time and really enjoyed herself...Go figure.  Maybe she operates best on 2 hours of sleep...

But Mommy, not so much.  I need my sleep...So I'm putting a word up there to the big guy...please please please have her sleep through the night tonight!

A Love Story From The Y-Not...

On August 31, 2004, I went on my very first "date" with my now husband.  I had met him months before but I was going through a very horrifying divorce.  I met him in a bar.  Yep.  I said a bar.  Cliche right? 

This wasn't my first "rodeo" as they say. 

I met my first husband at my work when I was a little over 16 years old...I married him when I was 19 and had our son right before my 21st birthday.  That marriage lasted until our son was a few months old.  I will save you all of the details and fast forward.  My son's dad and I have become very good friends and the "perfect" divorced parents.

I met my second husband in high school when I was 15.  We began as friends and remained friends until we were 18 and then lost touch after graduation.  We reconnected just before my 22nd birthday.  We had the all American love story.  He romanced me, cooked me crab, we got married, we bought a house, he was the prefect step father to my son and then we had Hailey.  Enter emotions that neither of us dealt with very well and the horrifying divorce.  I was 29 years old.

I am a fan of saying that he won all of our friends in the divorce.  It was like the judge awarded them to him.  It is odd how people take sides...The thing is that I had separated myself emotionally from mostly everyone after Hailey was born so it was easy for them all to take the position that I was the bad guy.  That was ok with me.  I wore the bad guy label like a badge of honor.

Enter the bar scene.  I decided since everyone in my life had decided that I was a "bad guy" that I should live up to that label.  I have to say that I am now using the label in the most innocent sense of the word...it was actually a more sinister label full of hatred and awful rumors back then.  So I found this local bar and I went in.  I found something amazing...People who were willing to sit there and listen to me cry.  A place where I could reinvent myself in the way that I dealt with Hailey's disability.  A place where I wasn't only Hailey's mom...where I wasn't defined by her disorder.  Where I didn't have to talk about cri du chat unless I wanted to.

Hailey's dad and I had a 50/50 split of time in our house and of Hailey and everything else at this time.  We were house sharing and thought at the time that it would be best for the kids if we kept that arrangement.  We also decided that we shouldn't tell our families quite yet...It was dysfunctional at best!

During this bar scene time, I met this guy.  He was crazy and bold and handsome and aggressive and gentle all at the same time.  He was like no one that I had ever met before.  He was funny at one moment and serious in the next.  Extremely intelligent and able to discuss current events and politics and religion.  His favorite saying at the time was "I don't have to lie to kick it" which was refreshing...if not a little "young" for me.  He got my phone number by "borrowing my phone" and calling himself (smooth I know :-) He was 5 years younger than me...really a baby in my eyes at that time.  No kids, no house, no responsibilities.  I think that his only goal at that point was to make sure he was at the bar at every moment that I was!  It was awesome and amazing...the flirting.  And the innocence of it.  Because I had already decided that I was not getting involved with anyone...and if I ever did get married again, it was certainly going to be for money and never again for love!!

Our first date wasn't a planned thing.  He didn't really ask me out or anything.  I was upset and sitting at the bar.  It was my cousin's birthday and she had passed away years before.  I was crying in my beer, quite literally.

Up comes this guy and says, let's go do something...And so I went.  At this point, I was thinking that he was going to take me to dinner or somewhere romantic or to a movie or something fancy.  That was what I was used to...but not this guy.  I kept asking where we were going but he said it was a surprised.  He stopped at the gas station and bought a 6 pack of corona and parked in a parking lot.  Then he said, come on we are going for a walk.  By the way...I had heels on.  I was dressed for a bar, not for a walk and I told him that.  So he said, well take them off...and I did.  And we walked by the river for a long time.  It was the simplest date I had ever been on.  And he let me cry and talk about my cousin and about my divorce and about my crazy life and about Hailey.  It was so refreshing.  He didn't judge me, not with his words or with his eyes.  I think that it was the first time in years that I was able to really be who I was.  I didn't have to be the all American mother or wife.  I was just me.

I think that I fell in love with him right there on river bank...with muddy feet and my heels sticking out of the back pocket of his jeans and a corona in my hand.

That is what I love most about him and the love that we have.  It is simple.

Sometimes I expect him to take me to some fancy dinner and movie.  Sometimes I want him to romance me.  And he does all of those things.  But most of our best memories are simple.

Like sleeping in the back of the car on the beach in Humboldt.  Walking on the trails.  Hiking in the redwoods.

And I love him the most when I see him walking with Hailey or Aubrey or talking with Zach.  I love him more every day.

Here's to the rest of our lives together.  It seems like yesterday that he was using some cheesy pick up line in a dive bar called the Y-Not...and there went my plans of marrying for money!

7 MILLION DOLLARS

I was sitting in the waiting room during speech therapy today and googling odd things on my iPhone.  Then I started googling cri du chat blogs just to see if there was anything new out there that I hadn't read (I think I've read through every magazine in that waiting room!).  So I came across these articles highlighting this case.

A couple in Massachusetts sued their doctors and geneticist  for 7 million dollars and WON.

For having a child with cri du chat.  With Hailey's disorder.  Because the doctor's didn't encourage them to have an amnio and get a chance to abort the child if the couple felt it necessary.

Seriously.

What.

The.

Hell.

(please excuse my bad blogging language but what I really wanted to write was the F word!).

OK, I am all for the right to choose.  Really, I am. 

But after the fact?  After the child has been born?  I mean.  Seriously.

I don't even know how to express the irritation and the immediate hatred that I felt for this couple.  Unfortunately, their names are published.  I can only hope that I do not run into them someday at a conference or something.  I am not sure that I would be able to be civil or even polite.

I mean they have $7 million dollars because they didn't have the chance to abort their now living child.

WOW.

I cannot say what decision I would have made if I had an amnio.  I am just not sure.  I didn't have the burden to wear those shoes or make that choice.  I am glad for that.  I had testing done when I was pregnant with Aubrey and I am not sure what I would have chosen if those tests came out differently.

But how does that feel to your child to basically say in a court of law that you would have aborted them if you would have known who they would become...And you are so pissed and put out that you are going to sue someone.

Horrible.  I am going to go and give Hailey a big giant squeeze now and thank god that I am not a horrible selfish filthy rich person...Ok well maybe I won't thank god that I am not filthy rich...maybe I'll just thank him that I'm not horrible and selfish.