Can you hear her?

I love this sequence of pictures.  We went to see Santa this weekend and took the kids photo together afterwards.  I really liked the setting here and there was a pretty fountain in the back.

I didn't even realize that the water noise might bother Hailey but she was sure to tell her brother very clearly.  I was already to set to take the photo so I just started shooting since taking a good photo of all three kids takes about 25 shots!!  And here she is patting him to tell him.

 And he is saying sit down (notice how Aubrey is posed and still smiling!  She knows that if she just sits there and smiles this will go much faster!! ha ha :-)

 And she is making it more clear pointing to her ears (this all happened within seconds)

 And her pouty face to tell him that something hurts...

 And my hubby steps in to remove the hearing aides and....

Voila!!  The perfect Christmas photo!!

Who says that children with cri du chat can't communicate...We hear her loud and clear!!

So proud of my hubby!

When my father took my life apart three years ago, I wasn't sure that we would ever recover financially...Honestly, I still have my doubts.  I have become a financial worry wart.  I literally stress about dollar that we spend. I am continually afraid that next month someone will bring me down again.  It is easy for people who have never struggled financially to say money doesn't buy happiness...I'm here to tell you, it doesn't buy happiness but it surely helps if you have all the other parts of your life together.

I remember when we had the magic 3 months emergency savings in an account and a fat retirement account.  When we went out to dinner 3 times a week and I ordered groceries online...no need to worry about coupons or saving.  When I was a wine snob and a grocery snob and a food snob.  

So crashing financially was an eye opener to me...if it was done by anyone else, I may have been appreciative at some point.  My eyes have been opened to how much we wasted, how irritating we must have been to other people, how stupid it was to charge on our credit cards never worrying that there would be a time when we couldn't afford to make the payments...how spoiled rotten my children were (what do you mean every 9 year old doesn't need a $15,000 basketball court????).  I just didn't think about finances.  They weren't a concern to me.  I figured even if I got fired or something happened to my job, I would just get another one...not so simple, I now know!!

But I'm not appreciative.  Mostly because it was done by my own father so there is an emotional trashing to this lesson that will never ever heal.  A daddy's girl who was knocked so directly and forcefully off of her pedestal by the very person who had put her there.

(side note, I could go on and on whining about this issue but it is not the point of this blog so I've stopped abruptly in my sob story to get to the point)...

So after 3 years of my hubby struggling to find a stable job in the construction industry (since he was basically black balled from the yachting community by the person above & will never be able to get another 100 ton master captain position in our area), we decided that there was no time like the present to go back to school. He started school in July and quickly moved to the top of his class.  He is training to go into the medical field and he will finish in August...did I mention that he brilliant?  Anyways, so the top two people in the class get the opportunity to interview for their clinical rotations to take place at the top hospital in our area!  And yesterday we found out that he made it to that level!  So in a couple of months he will get to interview and hopefully he will get the internship position and then after a few months...the hope is that he will get offered a full time position!  So exciting!  

That through all of this emotional and financial devastation, something good may be coming of it!  That we will maybe prevail!  

I've been pretty negative lately...my inner insecurities and my emotional trauma parts have been spilling out for all to see in my blog and on my facebook page and in real life.  Tracey used to tell me that when I act like this, he wins...which I know she is right.  

Fingers crossed, and toes, and eyes and arms and legs crossed that by the next holiday season, we will once again be financially stable and leave all of the horrible events of the last few years in the dust!

Success

Every year we take the kiddos to the mall to see Santa.  This Christmas season our days literally revolve around Hailey's feeding times...but if you know me, you will know that I am the master planner and if anyone can fit life in around 6 hours of feeding every day, I can.  So we fed the little lady Saturday morning a little later than normal so that we could get to the mall as soon as Santa got there and we could get in line, talk to Santa, take the Santa photo, take a couple of photos of all three kids together, get back in the car and make the 1/2 hour drive back home in perfect timing for Hailey's next feeding.

So Santa gets there at 10 am (I have looked it up) and we get there at 9:45...and there is already an hour long line!!  Ut oh!  The best laid plans right.  uggg.  I am also the queen of asking for a manager and somehow making  things work when anyone else would just give up and go home...so I asked to speak with the manager and I explained the situation.  I told her that we could wait a 1/2 hour but if we wait an hour then we are going to have to feed her and then get in line and start all over again.  So what I didn't realize is that all this explaining, the manager was not understanding what I meant by being tube fed.  I realized at the end that she thought I was saying "too fed" and Hailey wasn't standing next to me during this conversation (she was sprinting around the mall with hubby and the 15 year old chasing her down which she thought was an amazingly funny game!!).  So the manager elf was nasty in her response and said, 'if she is too fed, then just don't feed her anymore!'...followed by a laugh.  So then, I got upset and I said, not TOO FED...TUBE FED...as in she has a tube coming out of her stomach that she has to be hooked up to a pump and have formula pumped into her stomach for an hour 6 times per day!!  So poor little manager elf lady was totally flustered (and I really didn't mean to raise my voice!) and escorted us to the exit where we went ahead and skipped the line altogether...so ok my temper worked in my favor this time! 

So we got the kiddos Santa photos taken, we took a few photos of all three kiddos for our holiday photo & got back in perfect time to feed her!  Success!  

See we can do this!  We can still go out in the world and have our family traditions!  It was wonderful to have a successful day!

Yep it is sucky.

Sometimes this life just sucks.  Not all the time but sometimes.  I'm not drowning in sorrow or anything but really there are things that happen when you are a mother to a special needs little lady that just suck.  Most of them you just get used to.  You accept them and move along.  You come up with ways around the really sucky parts. But sometimes you forget and you try to hit the sucky parts head on...Like 10 years of experience in this sucky life will somehow make the sucky less sucky.  But it doesn't work all the time.  It is just SUCKY.

For example ~ Thanksgiving was SUCKY.

First of all, any big event with Hailey is difficult.  She doesn't like crowds.  She has a hard time regulating her behavior.  She tends to obsess over one person in the group when she is nervous (normally her Poppa).  The loud noises bother her.  And the kicker is that when she is nervous, she lashes out at other children and tends to pull their hair (my apologies to the little girl who got the brunt of Hailey's hair pulling this year :-( ...which is fine if it is our close knit family but throw some other kids in the mix who don't know Hailey very well and it is a pretty ugly situation.  We avoid a lot of these situations but we can't avoid them all.  This year there were about 15 people who didn't know Hailey very well.  SUCKY.

Then lets throw in the new subject of her g tube and her pump and eating every few hours for 45 minutes and how she is not quite used to the fact that she can't actually eat by mouth.  We tried to make it as easy as we could for her.  I adjusted her feeding schedule to be the same time that dinner was served so that we would all be sitting down and her pump and tube wouldn't be a big issue (she is still a little embarrassed about it).  My mom sewed a part into her dress so that her tubie could go through it and it wouldn't be very noticeable.  But the inevitable happened...which happens at everyone's Thanksgiving dinner (to my sister - don't be upset, this wasn't your fault and it does really happen at everyone's house on thanksgiving)...dinner was late and I couldn't wait any longer to feed her...so I tried to get her to sit down at the table and I was going to sit with her...but that didn't work.  She wanted to be up.  So I tried the backpack while she was walking around but it got clogged and pumped a little air!  AHHHHH  So I took her to the car so that I could finish the feeding while she was calm but that just made her panic more!  And by the time I was in the car, I was crying which wasn't helping...Everyone was trying to help which sometimes just makes it worse all together.  SUCKY.

The fact is that there are things that I should not try to do.  I think that a big Thanksgiving dinner, while in theory sounds amazing for us is actually torture for her and when she is feeling tortured, I am also tortured. SUCKY.

Being in the hospital for 8 days and having two of my really good friends not come by and see her or me...Sucks.  Yes, I realize that they are men.  I get that they are uncomfortable in the hospital settings but really...No visit...8 days?  They only call and check in after they know she is home and ok.  SUCKY.

Realizing that while you are in the hospital, you don't have a whole lot of friends anymore sucks.  The thing is that I have been on this cri du chat/special needs road for almost eleven years and I have lost most of my friends along the way.  Some to my own mistakes, some to my own emotions but most of the friendships were just casualties of the special needs world.  It is a hard world to live in and a hard world to watch someone you love in.  So people just break off.  Why watch your friend in pain.  Better to just leave I guess. SUCKY.

Having her back in diapers full time after 9 months, sucky.  Worrying about her health every minutes of every day, sucky.  Changing the dressing and retaping her tube every night, sucky. Feeding her until 11 at night and then getting back up at 5 am to do it again, sucky.  Cleaning her hearing aides, sucky.  Having to put her in the car still at almost 11 years old, sucky.  Having 3 medical appointments and 3 therapy appointments every week and still trying to figure out how I am going to go back to work, sucky.  Driving a mini van so that her wheelchair will fit, sucky. sucky. sucky. sucky.

There are lots of good things in my life but those are for another post.  This post is just going to focus on the parts that are SUCKY...

Your keyboard should have a mute button

There is something to be learned from the old saying "if you don't have anything nice to say, don't say anything at all".  I'm not saying that I always adhere to this little piece of advice that we have all gotten at one time or another but last night...I did hold my tongue (or my keyboard in this case).  On one hand, I am glad that I didn't continue to respond...and on another I am pissed at myself.  Because I held my "keyboard" I tossed and turned and fumed all night and have woken up fuming.

I love facebook and I love my blog but a few things have happened on there over the last week that have really gotten underneath my skin.

For one, I made a political reference about the occupy movement last week.  I don't normally comment about political issues.  My real father is a crazy political person who cannot let anyone have their own opinions or beliefs so I learned how to just nod and agree when people speak about politics.  So my political reference on my facebook page was commented on by a friend with a sarcastic joke which in turn set off another friend of mine and by the end, it was a full blown insult fest directed at me!  The friend of mine actually said I could look like an ass, I didn't do my research, I didn't know what I was talking about etc etc etc.  So I deleted the whole thing.  I don't like to be attacked.  I'm not good at holding my tongue and I can get very snarky and nasty when people come at me with insults.  

Last night, one of my facebook friends had some accusations slung at her about some t shirts that she has had made for herself and that she is now offering to all of our cri cu chat families at cost.  The accusations were really horrible and made references to her doing it for her "own personal game" and that she was in fact keeping profits and taking away from the 5 P minus society.  My friend making the t shirts has been asking all of us on facebook and in our support groups for our opinions about the shirts.  We voted on them and decided on colors.  It was an open conversation that included the price that it would cost to get them made.  There was even a post from my friend where she was super excited because she got a cheaper price then we all originally agreed to pay.  Anyways, I am sure that the person who was slamming her just had a crappy day (as we all have on this road).  I am sure that the mute button on her keyboard was temporarily broken.  

The reality is though that I have too much going on in my life to be slammed by people on cyber space. I go onto facebook and blog because the people who read my blogs are supportive.  Because they have become my friends.  My cri du chat friends have become my family.  And families all have bad days.  There is always a sister or a cousin or an aunt or someone in the family who heads off the keyboard deep end.  

I am just hopeful that they can realize that sometimes it is just best to say nothing.  If you don't have anything nice to type, don't type anything at all....

Thankful for Tubie

Hailey has been out of the hospital for a little over a week now and oh what a week it has been.

I really wanted to hate the g tube and I do for the most part.  I mean, I hate that she can't eat cake and candy.  I hate that she can't have salad or bread.  I worry about how she is going to do on Thanksgiving tomorrow with all of that food around and how she is going to do at her cousin's birthday party this weekend.  How am I supposed to explain to her that she can't have any cake after the Happy Birthday song?

But here is the flip side.  We have been dealing with Hailey's pretty severe behaviors since she was about 3 or 4...some of the behaviors began even before that.  The head banging, the rocking, the sensory seeking behaviors, the self injurious behaviors and then the aggressive behaviors.  We have had her on a few different types of medications over the last few years and she has been in behavioral therapy for as long as I can remember.  I expected those behaviors to continue when we got home from the hospital...but they haven't. 

Some of them have remained of course.  The rocking and the sensory behaviors are still there.  She still pulls her sister's hair occasionally to see what reaction she will get and she throws things and gets frustrated.  But for the most part, they are dull in comparison.  And right now she isn't on any behavioral medications at all.

It is actually quite amazing.  I love it.  I don't know how long it is going to last or if it I am going to regret typing this out (you know the old spoke too soon analogy) but I'll take it for what it is for now.

The sad part of all of this is.  I have been thinking that maybe her behavioral stuff has been more medical for the last 7 years then any of us realized.  I mean maybe she was refluxing and aspirating so badly that it was creating a need to have the behaviors.  Maybe she has been silently choking on her food and that was her way of trying to tell us.  I look back and see all of her flapping at dinner, the vomiting when she would swim, the grabbing and hitting...Maybe she was hurting.  That makes me sad.  It makes me sad that we were trying this whole time to modify her behavior and here it was something else causing them...and that she was most likely in pain.

So although I do place some blame for the tube on the ENT who did her botox treatment, in the back of my heart, I am also thankful that she developed this swallowing problem.  Without the swallowing problems, without the tube, without the botox we would still be feeding her lactose which obviously doesn't agree with her...we would still be trying to modify her behaviors that were most likely caused by reflux and aspiration.  

So this year for Thanksgiving, I am going to be giving a small and quiet thank you to Hailey's new and shiny g tube which we are affectionately calling "Tubie".

My Challenging Little Mystery

Hailey had her g tube placed last week.  It was supposed to be a 3 to 5 day stay in the hospital and we were all prepared for it.  I wrote all of the emergency information out for my hubby who was holding down the fort at home.  I did all of the research.  Most of it said that it was a fairly simple surgery and had a quick recovery.  Even in preop, the nurses were asking us if we were going home right afterwards.  So I was pretty confident that this thing was going to go smoothly.  So much so that the surgeon was actually leaving for vacation that next day and I was fine with that.  Of course she had partners on call if there were any complications but she assured us that wouldn't be necessary.

Well if you haven't met my daughter, you wouldn't know that Hailey likes to do things big.  As one of the doctors in the hospital told us on day 5...This is the Hailey show, we are just living in it.  She likes to make the rules and she makes sure that we are all playing by them.

She slept from 7 am Friday morning until 6 am Saturday morning waking up only to violently vomit :-(

So of course, there were complications.  First of all, she was in a significant amount of pain.  When we went back into the recovery room, she was already shocking the nurses with her super human strength and one of the nurses was having to lay on her while the other nurse gave her the morphine.  The pain that was suppose to begin to subside over a period of 12 hours or so was still very present at hour 24.  She was still receiving morphine every 2 hours at hour 36 and they had to add an iv form of ibuprofen.  She would sleep for an hour while the morphine was on board and then wake up in a shocking amount of pain.  In the meantime, we had to begin to slowly feed her.  So ounce by ounce, hour by hour we began the feeds...which she promptly began to vomit up.  They finally stopped the morphine and changed the medication and added a tylenol with codeine to the ibuprofen.  But the feeds would not stay down.  By day 4 in the hospital, she spiked a major fever even with all of the fever reducers on board and would not stop vomiting, even with the anti nausea medication on board...they were talking about meningitis.  They got a chest xray and a belly xray.  We had spoken to the dietitian several times because they didn't have her PediaSure Peptide 1.5 in the hospital so he had put her on a different formula which he said was "the exact same formula just under a different name".  We asked him so many times because of course Hailey is super sensitive.  Her temp broke on Saturday early morning and she was on tons of antibiotics for an ear infection.  She still couldn't keep those feeds down though.  By Sunday morning we were beyond frustrated.  Slow feedings weren't even working so they brought in another doctor and another surgeon to try and figure things out.  

Her sister was so worried about her and she copied the pain chart for her so she would understand it better.

That is when I met my favorite doctor.  On Sunday morning...Day 6.  He sat down on the side of Hailey's bed with me and went over the whole thing.  He said that he didn't know Hailey so he was counting on me to insert my opinion and say whether or not I agreed with his plan.  So first things first, we brought in her formula from home (and low and behold it had 6 grams less of protein than the stuff they were trying to give her in the hospital).  We then added prevacid and reglan.  We then started with 100 ml feeds (1/2 of the normal amount) and started building things up slowly but surely.  He ordered an upper GI after the meds were on board for 24 hours to make sure the reflux was controlled and that her tummy was emptying...And low and behold...It worked!  (well not right away but in about 24 hours!)

Finally she was feeling a little better and got some color back into her cheeks

Finally by Monday she was holding down most of her feeds...even through the hospital switching her room (which was another issue...she has trouble with change anyways so this was a BIG deal!)  She threw up one but then we started again and by 10 am on Tuesday morning we did the last feeding and we were ready to blow that place!  By 11:40, her pump was delivered (we had been feeding her by syringe since September 16) and by noon we were in the car.

If we waited for someone to help us with all of our stuff, we would have been in the hospital room for at least another half hour...No way!  I packed it all up on her wheelchair and we escaped!  She thought it was hysterical!

She is so resilient.  The thing is that once we got in the car, she was dancing to the music and laughing and talking again.  She was so excited to go home.  It was such a long 7 nights and 8 days.  Exhausting for both of us.  Once we got home, we half expected her to be tired...but nope.  She was full of energy.  Running about, playing with her sister.  

She has lost 10 pounds and we are going to be slowly and steadily building that weight back up.  We can't go too fast because we don't want to upset the delicate feeding balance that we have going right now. 

All I can say is that I really appreciate all of the doctors and nurses that worked with us over the 8 day stay.  She can be challenging and she is definitely a mystery in a lot of ways.  I appreciate the fact that they trusted me to give them her history and to speak for her.  I appreciate the fact that when she wasn't doing well, they had different doctors come in to weigh in with their expert opinion.  I appreciate the fact that the nurses were so supportive and helpful and helped me to keep her comfortable.  I appreciate the fact that even when the doctors and the nutritionist were wrong, that they didn't give up, they just came up with a new plan.  

I also really appreciate the fact that I am not jaded.  People make mistakes, experts make mistakes, and doctors make mistakes. They are just working with the information that they have and it isn't their fault that Hailey's body doesn't follow the rules.  I trust the doctors and the nurses.  They have knowledge that I don't have.  I need them to help me to help her.  I trust the therapists, especially her behaviorist who came to the hospital on the first post of day (day 2) to help me to calm her.  Without the therapists, I wouldn't have the knowledge that I do have about sensory input and many other things that help her get through her day.  I trust the dietitian (even though on this one, he screwed up big).  I need him to help me with her calorie intake and with her prescriptions and with advice.  I have to trust the experts and I do.  I am so glad that over the ten years and ten months that I have been a "special needs mom" that I haven't lost my trust in those people that I need.  

For almost eleven years, Hailey and I have been in this together.  It is exhausting but it also refreshing to see how resilient and how strong she is.  I get my strength from her.

My Morning

Every other weekend, Hailey goes to her dads house for a few days.  I get all excited for some respite time and in all of that excitement I tend to over plan my few days.  I generally do all of the laundry, make the grocery list, clean the house, wash the car, straighten up the garage, clean out the cabinets and drawers, wash all of the light switches on Friday...Aubrey gets to have a nice long bath and we read stories and play.  Then I have date night and visit with my friends and go out with adults and generally pack in as much fun as I can possibly take...Oh and we try and go out to eat as much as we can since we don't go out to restaurants with Hailey since she had the tube placed.  I PACK IN THE FUN and THE RELAXATION and THE CHORES!  

So I specifically planned this morning to lay around and maybe sleep in.  But nope.  I can't.  I am so used to getting up at 5:30 that I had to force myself to stay asleep until 6:30.  Then I watched the news, got up and started the laundry, unloaded the dishwasher, made my coffee, read a little bit, swept the kitchen, went back to bed and watched the news again...I cleaned the bathrooms and straightened the laundry room.  I vacuumed the couch and the living room.  

I really want Aubrey to wake up so we can play and start our day.  I am thinking a nice long bubble bath for her while I read...then going to the library and picking up some new books and then to the park.  But she is still sleeping!!  

It is only 8:30 in the morning.  I always forget how slowly time goes when Hailey is at her dads...how many things that I can accomplish in an hour.  How it doesn't take me all day to do things.  

But oh dear!  What a miserable existence it would be without her.  I am happy to have my few days of respite but I miss her so much.  In less than 24 hours, I have had all of the respite that I need to refuel myself.

Good News

This tube thing is pretty scary.  I remember sitting next to her on the hospital bed and the speech pathologist, nurse and doctor were explaining about how they were going to need to put in the ng tube.  And then they mentioned the g tube.  I remember crying pretty hysterically.  I didn't really take in anything that they were saying all the way.  I know that I asked all of the correct questions but it did not sink in right away.

It is pretty interesting the things that went through my head.  Questions that I wanted to ask but just whirled around in my head.  Questions like...can she go on roller coasters anymore?  Can she swing?  Can she go down the slide?  Can she still walk with it in?  Can she wear chapstick?  Can she swim?  Can she have a bath?

I did ask the important things.  Thing like...how do we eat dinner when she can't?  How do we keep her from putting food into her mouth?  How does it stay in?  How do we get it back in if it comes out?  How do we tape it?  How do we put the formula in?  How do we take care of her now?

I remember that I was crying at 4 am after she had vomited once again and one of the nurses was sitting in a chair in front of me soothing me and telling me that it was all going to be ok.  I remember that he said to me, you'll see in a few weeks you will be able to feed her with one hand and cook dinner with the other...You're going to do fine.  I remember that I really didn't believe him...AT ALL.

Well the other day, I was feeding her breakfast and had the syringe in one hand and I was blogging with the other.  Today, we were driving home from rollercoastering (one of Hailey's very favorite things to do) and I was sitting in the seat behind her in the car, feeding her with one hand and facebooking with the other.

We have gone to the park and she swings just fine.  She also goes down the slide fine as well.  She can still ride her bike and rollercoastering was just as exciting as it has ever been.  So giving her a bath is risky because she swallows the water...she can still shower.  I've read that she can still swim even when the g tube is in.  Her lips still work and she still loves chapstick.

She is still her and who knew that I could multitask this well!  Her behaviors are definitely more challenging and I burn out faster than I did before but we are getting used to things.

Hopefully when she gets the g tube, she will be able to go back to some sort of school program again and my burn outs will get farther and farther apart.  But really...It is true, We really are doing just fine.

And our biggest silliest questions have all been slowly answered.  But most of all, the good news is that she can still rollercoaster!

It's the little things

Like the fact that Hailey hasn't puked in 36 hours.  We have finally determined that she has trouble with yogurt (well probably most dairy products).  It took us a week to determine what it was.  Of course it was that little bit of yogurt that we had started to feed her.  Only 3 teaspoons a day to get her swallowing muscles working again. It's the little things.

Like the fact that ending dinner five minutes earlier makes a happy night.  We have finally decided that dinner ends on a sour note a lot of nights because we are all chatting and having fun...so much fun that we fail to notice that the girls have just lost interest.  We kept saying "why does dinner keep ending in chaos?".  And then we realized, just end it a few minutes earlier & it ends in peace and happiness!!  It's the little things.

Sometimes we are so busy thinking of the big solutions that we forget to try the easiest solution first...The little things.

NO THANK YOU!

A couple of years ago, Hubby and I were discussing having another baby.  I never really wanted to have any children after I was 35 so we didn't have a very large window to decide.  Life was thrown at us pretty fast over the last couple of years and we never really made a definite decision.  

I'm 36 now and way past our personal deadline for having another one and all I can say is THANK GOD!

I love my children so much and I really enjoy being a mommy.  Little newborns are so cute and I really loved the newborn and toddler stage.  I definitely miss it.  

But the fact is that my oldest is getting his license in the next few months, my ten year old's medical and behavioral stuff is out of control right now and my four year old is struggling to find her spot in the line for attention.  I am pretty sure another baby would shove me over the edge. One infant, one in elementary school, a medically and emotionally fragile ten year old, and one headed into college...NO THANK YOU!

Even just the thought brings me back to the two days last week that we were in the emergency room to have the ten year old's ng tube reinserted.  The ten year old was screaming and clawing and signing "drive home"...The four year old was jumping about and dancing and screaming in her own way...The nurses were giving us dirty looks...And Mommy was literally sitting in a chair with her head in her hands.  This went on for FOUR hours, two days IN A ROW!!  I can't imagine if I had an infant with me as well!

So even though I know a baby is a blessing and all, I am thanking God for the fact that he did not bless me with another one!

Happy Friday!

This is a hard road to travel...but it's my road!

I accept that most people are trying to be nice to me when they give me advice or “the nod”. You know “the nod”. The one that says, oh man, your life sucks. I feel so sorry for you. I pity you.

I hate “the nod”.

I know that they are trying to be nice but really, I don’t want your pity. My life doesn’t suck and I really don’t want people to feel sorry for me. I have a great life. And for all of the obstacles that my children and I have been thrown in our lives, we are all pretty well adjusted and happy.

Here is what happened last month when Hailey got out of the hospital…

I was dropping Aubrey off at preschool. I have to bring Hailey now to drop her off because Hailey can’t go to school right now…to make matters worse, I have to have Hailey in the wheelchair because they don’t allow siblings into the classroom and they are making a special exception for me. The problem is that the wheelchair ramp is located on the opposite side of the building than the main door that Aubrey must go into to shake the teacher’s hand in order to start the day. So I’ve been walking Aubrey to the front door and then after she is in the class, I have to go around the back and bang on the door at the wheelchair ramp (because of course it is f*ing locked everyday!!), then someone opens the door and Hailey and I go in to sign Aubrey in. I have asked several times if there is anyway that they could just keep the wheelchair door unlocked during this time but nooooooo…So we go through this during drop off.

So most of the preschoolers stare at her because of the tube now so I have gotten down on my knees and said hello to them and explained to them that it helps her to eat right now. It is all very matter of fact and the four year olds accept it and today (day 2 of this routine) only 2 stared instead of all 20 of them…(definite improvement!).

So I am on my knees next to her telling a little boy about the tube and his mom says, “wow this cold really knocked her out!”…and I said “yah, we were in the hospital for 6 days”…and she says, “yah, my three got it too”…and I said, “oh that’s too bad, I hope they are feeling better”…and she says, “oh yah, it only lasted 2 days”…and I said, “that’s great. I have to go because I have to feed her every 2 & ½ hours so I pretty much feed her and then turn around and feed her again”…and she says, (yes she really says this…quite literally…and I am still giggling because of the absurdity of it) “I know, it is so hard to be a mom, I am so busy all of the time, I barely have enough time to get my nails done most of the time”.

What I wanted to say was…really??? Are you crazy? I don’t have enough time to sleep. I ate dinner last night at 10 pm because I was feeding her during our family dinner time. I haven’t eaten anything all day because I don’t really want to eat in front of her. I just spent 5 nights in a hospital watching my daughter go through hell…AND YOU DON’T HAVE TIME TO GET YOUR NAILS DONE?????

Now, I know that she wasn’t being cruel or mean. I know that she was trying to be nice and to her a life with 3 normal developing children ages 11, 8 and 4 is complicated and hard. I understand that I haven’t walked in her shoes or anything.

That is why I just said “oh yah” in response and then giggled my way back to the car. I don’t want her to have to walk in my shoes and to tell you the truth, I don’t really want to walk in hers.

My life is hard. This is a hard road to travel but it’s my road. That doesn’t mean I can’t laugh or get angry when people say really silly things to me.

My Dark Cloud

We have a lot of sadness in our lives right now.

As most of you know, Hailey has been struggling with dysphasia (which causes an inability to swallow) after a botox treatment to decrease her drooling.  She was hospitalized for six days last month and ultimately came home with an ng tube (a feeding tube in her nose).  When we came home from the hospital, I thought (even though I didn't say it out loud) things can't really get any worse.

Well they did.

Three days after she was discharged from the hospital, my best friend was in a horrific car accident with her two youngest children.  She died on impact.  Her two young children were pulled from the car by a passerby before the car went up in flames.  They were in the hospital for over a week (and thankfully are on the road to recovery).

I keep thinking that if I just keep putting one foot in front of the other that I'll stop crying and stop being so sad.  It's not like the sadness is overtaking me or anything.  I have too much to do to be engulfed in it entirely. But it is there, like a cloud...all the time.  It follows me around.

My daughter is ten years old and although she has a genetic disorder and a multitude of cognitive and physical problems because of the disorder, she has always been medically healthy.  Besides a few ear infections and normal childhood illnesses, she has been the picture of health.  Doctors have all marveled over it.  I have always held onto it.

But now she is not medically healthy.  She cannot swallow or eat.  The speech therapist told me yesterday that she did aspirate (food into her lungs) yesterday during the swallow study so we needed to watch for respiratory distress...Seriously???  She is going to most likely be getting a g tube (a tube directly into her stomach through her belly...not in her nose...YES ladies and gentlemen, surgically placed and permanent for all intensive purposes).

Did I mention that she can't go to school...And she can't take any of her behavioral medications until we determine if this swallowing problem is going to improve or not?  So not only do we have a tube in her nose and she can't eat and she can't go to school, she also has huge fits (bigger than before) that include ripping her clothes off, hitting herself in the head and throwing EVERYTHING!...OH and there are no breaks while she is at school (did I already say that?)...so this is a 24 hour thing for our family (minus the 6 days a month that she is at her daddy's).

Oh and my best friend is DEAD...never to return.  Although I keep thinking that I should just call her.  I mean, I didn't see her dead so it can't really be true right?  I wonder when it sinks in that she's not coming back.  I feel like the children are handling her passing better than I am.  Aubrey is making her pictures to send her in heaven attached to balloons...and I can't even accept that she is not really a phone call away.

So see, there is a lot of sadness around here.  I think that can probably explain my writer's block.  How the only thing that I want to write about is sorrow and sadness but how I feel like if I put it down on paper for everyone to see and read that it makes me weaker.  Like I can't handle it...and I can't in a way but I must handle it.  I don't have a choice.  Falling apart is not really an option.  But how do I keep myself all the way together?

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.

I DON'T WANNA!!!!

I don't want to blog about bad stuff. 

I don't want to blog about how Hailey fell on week 2 of school and broke her front teeth.  I don't want to blog about the fact that when the school called they asked me to bring a new dress since she had bled "a little".  I don't want to blog about how when I got there she was bleeding from her mouth, her nose, her head and her teeth were broken.  I don't want to blog about how the teacher said, It's not that bad when I said I was taking her to the ER. I don't want to blog about how I've been calling Medi Cal and different dentists since it happened trying to find someone who can get her in (who accepts Medi Cal) before the end of September.  I don't want to blog about how ridiculous it is that there is only one dentist in the entire Sacramento and surrounding areas who takes Medi Cal and who does hospital dentistry.  I don't want to blog about how the dentist lady was rude and said, well (our dentist) is the only one who takes the "disabled people" because of the liability.  I don't want to blog about how she also said, well what can you expect, you have Medi Cal!  I don't want to blog about how the teacher told me that she was sorry but Hailey refused to walk near her so she couldn't promise that she would be safe at school.  I don't want to blog about how every time I look at her teacher she looks like she is a deer in the headlights.  I don't want to blog about how the program manager of Hailey's case for the school district told the advocate that Hailey was too cognitively impaired to get any additional services although I just received CAPA testing for her that says she is advanced.  I don't want to blog about how her classroom is total chaos and I feel horrible that I have to leave her there every day.  I don't want to blog about Hailey having a BM accident and the staff only changing her underwear but leaving her in her poop smelling clothes all day.  I don't want to blog about the fact that I'm on the verge of deciding that I'm not taking her to school at all. I don't want to blog about any of that.

So I'm not blogging...So there.  Because those are the only things that I am thinking about blogging lately. 

Maybe now that I've decided I'm not blogging about that, I will have something good to blog tomorrow.  Maybe now that it's all out there in the "that will not be my blog topic for the day" section of my brain, all of these things will magically resolve and I will be free from having to think about any of that anymore.

So goodnight, blogging friends...Wish me luck that the "solve all of your crazy problems overnight" fairy comes down and sprinkles me with magic fairy dust tonight!

An Advocate

So I've specifically avoided blogging about my crazy "IEP that still hasn't been presented to me or signed after 4 months experience" that I've had with the school district...Mostly because I know that Hailey's old teacher sometimes pops over to my blog and I didn't want to throw her under the bus or hurt her feelings...*so if you are reading this Mrs. Old Teacher please forgive me, this is not your fault...we love you*.

We had an IEP in early May and I felt like it was a good one.  The district mostly gave in to everything that I asked for and those things that they didn't agree to, I asked for Independent Educational Evaluations for.  Everything was great.  But the School District has a habit of presenting the IEP to sign with the notes at least a month after the IEP actually takes place.  This is the reason that we have only actually signed one IEP in the three years that we have been in this school district.  It is really irritating and to tell you the truth I could never really understand the reasoning for waiting so long to present it for my signature.

So this time, we had a great IEP and mostly agreed on everything so I asked for it to sign but of course, it wasn't ready and I by the time it was presented to me, it was all wrong.  The things that we discussed weren't even in the notes and the important things were all wrong.  PISSED is only a mild word that I would use to describe my feelings for all of the preparation that I did for the IEP and all of the time that we spent in the IEP to have it come out wrong.  GRRRRR!!

So then I worked with the teacher and got everything ironed out but before I got the IEP to sign...she left the district.  She took a position closer to her family *which we solidly understand and support*.  The problem is that when I emailed the program specialist, her response was something like "if you agree with the placement, just sign it"...WHAT????  I wanted to scream and yell and kick and have a fit.  Actually I did scream and yell and kick and have a fit in my own bedroom...and I think I probably posted a few nasty things on face book (which I deleted).

An IEP is not just about placement.  It is about services and details and what happens where and what is going to be worked on and how my child will learn and who is going to teach her what and who is going to pay for what and who will be called when and what information will be collected and on and on and on and on...It is all of the details that tell everyone who ever works with her and everyone who ever sees her or evaluates her or assesses her who she is, how she learns and where she is at.  It is the document that forms her future years.  It is everything with regards to her education!!

So I called an advocate that I have worked with in a limited capacity with an IEP last year and she agreed to help me!!

YAY!

I am really happy to be working with someone who can help me get everything ironed out.  I am actually really excited to just have someone who is dealing with the district.  I haven't had to speak with the district directly for 3 weeks and it has been a huge relief!!

In the meantime I am trying to just relax and get the advocate everything that she asks for when she asks for it.  I am just trying to let go of some of the control and let someone else worry for a minute...

And that gives me a peaceful feeling that I haven't had in a very very long time.  And for that I am grateful!

I blog a lot about negative things...about things that bug me and things that frustrate me in this life.  I bitch and moan and complain more than more fair share on my blog...but Hey, It's my blog so I can do that!  It is a place for me to air it all out.  So that I can give my frustrations a voice and be the best I can be for my children and for my hubby and my family and my friends.

So today, you will be shocked to read a little positive information!  A little token of love.  I think that sometimes I forget to share with you all that Hailey has a fantabulastic life full of family and fun and friends and love.  We are not pouring over IEP meetings and preparing for battle at all hours of the day.  I do most of that at night or when the girls are napping or while they are playing.  Most of the time, they don't even realize that I am not 100 percent focused on them.  I don't mean to pat myself on the back too much here but I am a GREAT mother.  I think that I pretty much rock in most aspects of mothering!

So I wanted to share with you a story about my sister's boyfriend's daughter.  She is Hailey's age and she is wonderful!  She has absolutely the most loving and wonderful soul of any child I've ever met.  She just met Hailey back in May and immediately she was inviting and open with Hailey.  She made Hailey feel comfortable and helped her play.  It was really amazing.  Most ten year olds wouldn't make the time or the effort to make sure that Hailey was following along in the game.  They would be busy doing their thing, not really wanting the little girl who can't talk,who has fits and pulls other people's hair to join in.  But not this ten year old.  So when it was the girl's birthday, I told her that Aubrey and I would be there and she said "what about Hailey" and I told her that Hailey would be with her dad for that weekend and she said "ah man, I wanted her to meet all of my friends"...WHAT???  She actually wanted to introduce Hailey to her friend's from school...she is proud of Hailey and she is proud that they are friends.  She protects her and I think that it is wonderful.

I mean there are other family members who are equally as wonderful to Hailey...and other friend's children who are wonderful to her but this is a child who just met her.  A child who wasn't raised around Hailey.  A child who hasn't been expected to love her.  She just did love her on the spot and treated her with respect and admiration.

After that declaration that she wanted her to meet her friends, I got into the car that night and cried...bawled actually...Good happy tears.  My daughter has a friend...a real friend and that is wonderful!

God only gives special children to special parents...

Really??  I HATE when people say that.  I would rather be totally normal.  I wasn't special to begin with and I don't really want to be special now.  And with all of these special gifts that God is supposedly showering upon me because I'm such a special, patient and wonderful parent I would like to make some special requests...

Dear God...can you please remove the need to go to the bathroom?  It is really difficult to have to go to the bathroom because I can't leave Hailey's side for even a moment without all hell breaking loose.  So I figured, since I'm so special and all, that this would be a reasonable request.

Dear God...can you please relieve me of the need for sleep?  I know that you give her the ability to sleep every once in a while and I realize that this seems selfish and all but between the stress and the anxiety and the advocating, when she sleeps, I have things to do...So you see, if I didn't have to sleep, I'd be much better at this very special job that you have graced me with.

Dear God...can you please give us the ability to make some money...I'm not asking for millions.  My hubby is a hard worker and so am I so when we apply for jobs, I was wondering if you could just give us the opportunity to actually get one...You see, this special job requires us to have money.  It is an expensive life and there are things that she needs that we can't get her because of this general lack of money...so just a little opportunity would be great.

Dear God...can you please shower down an extra dose of patience...just a little.  As she is getting older, her temper is becoming shorter and shorter which is making my patience supply run low...just a little bit of patience...doesn't it come in a fairy dust bag or something?  I promise I will save it for when absolutely necessary like when she won't stop pulling her sisters hair and laughing hysterically.

Dear God...can you please give me the ability to shower, shave my legs, do my make up, get dressed and do my hair in 1 minute flat?  I mean come on, that is the time frame that I am expected to do it in so I'm sure that this is not a surprise that I'd be asking for this...I am special after all.

I think that is it...the list isn't too long.  Although if you are feeling rather generous, I could use a pause button every once in a while or a mute button to mute all of the well meaning comments that come my way.

Thank you!

Touring a New School

I don't know what I expected. 

Maybe I wanted to see ten year old girls sitting in a classroom with little pig tails and curled hair and pretty dresses.  Maybe I wanted to see children like Hailey speaking and spelling and reading.  Maybe I was looking for a magical place.   Maybe my expectations were too high.  Maybe I was looking for the Disneyland of options for my little lady.

I don't know what I expected but it wasn't what I saw.

I want for her a place to learn where the teachers have staying power.  Where they stay more than a year.  Where she doesn't lose the people that she trusts...the people that I trust her with.

I want for her a place where she has friends.  Where children laugh as much as she does and there is fun in the air and learning and fun.  Where she learns how to write but also how to use the bathroom by herself.

I want for her a place where adults don't yell at her.  Where she listens because they speak softly and she is interested in what they are teaching.

I want for her a place that I would want for any ten year old girl.  A place where she is safe and taken care of.  Where she doesn't get off the bus with dirty underwear.  Where her teachers don't call children worthless...no matter what the context.

I want for her a place where people love her and teach her and take care of her. 

It's not like I'm going to give up because I'm not but I'm giving myself this chance to be sad that I won't be fighting for this option...I would have had to "push a boulder uphill" which is what the advocate said...in order to get her into that school.  So at least I don't have to fight for something that isn't even good for her.

I want for me to have my auntie be alive so that I can put my head in her lap and she can tell me that I am doing everything that I can and that if I need to yell and scream then to yell and scream at her.

I want for me to have an outlet or a hobby or a job...something else to do than to think about this.

I want for me to not have to advocate for her for a while.

I want for me to not have to fight for every hour of therapy, every minute of intervention, every moment of communication. 

I want for me to find her the perfect place.  I want for me to find her Disneyland of options...a magical spot that will help her to learn and be happy.

A Day in the Life

We woke up early on Sunday morning.  And I mean EARLY.  Aubrey decided to wake up around 5 am and sit on the chair by my bed and STARE at me.  I finally cracked an eyelid and said...please go and play in your room or go lay back down at least until the sun comes up...And so she did but she was back at about 5:40.  Right when the sun came up.

Uggg.

So I got up and as soon as my feet hit the floor, Hailey was up too jumping and clapping like it was the most exciting thing to be up before 6 am on a weekend!  Now keep in mind that if we had somewhere to go, they both will sleep until I literally drag them out of bed.  If there is nowhere to go and no reason to be up, they will wake up at the crack of dawn...go figure!!

To the potty for both of them and then downstairs we went for an extra large cup of coffee for me and scrambled eggs, bacon and toast for them.  It would be a good thing to note here that hubby is of course snoozing away still at this point...No reason for us both to be up!  Unload the dishes from the night before while the girls are eating breakfast and clean up the living room...At least it is after 6 am by this point!

Then fold a load of laundry and do some ironing while the girls watch some cartoons...Thank you 7:15 am!

At about that time, hubby comes down the stairs and the girls head outside with him to feed the dogs.  I clean up the kitchen and make him a plate for breakfast and some coffee.

A shower for me, makeup and hair done while the girls stand outside the shower door and bang on it saying MOM, she won't stop touching me (well Hailey is just laughing but you get the point!)...then get the girls dressed, clip their fingernails, brush their hair and do their favorite variations of ponytails and braids.  Make the beds.  Wow, it is 9 am now.  Then we decided that it would be fun to make it down to Old Sac (since we were up so early anyways!) and get some lunch and walk around.  So by the time we give meds to Hailey, she needs a snack.  So I feed the girls both a snack and Hailey throws up because she hears a dog bark while she is eating and it startles her.  One of her hearing aides is broken and not having it has been making her startle and jump at little noises.  So, change the little Hailey's clothes, brush her teeth, clean her up and the kitchen up and off we go.

Oops wait, everyone under 12 needs to go to the bathroom before we get in the car.

We get down to Old Sac and eat lunch at a great little Mexican Food restaurant that is on the second floor.  Hailey really wanted her wheelchair but I didn't want to have to go all the way down the block to use the elevator so I said no...which sent her into a complete fit where she screamed and I literally had to drag her up the stairs to the restaurant.  I distracted her with the menu and we finally got our food ordered.  About half way in the meal, the girls need to go the restroom...So of course, off we go.  (only half of a margarita for me by this time~you will read in a minute why I didn't even get to finish it).

Wow, is it even noon yet?

In the bathroom, a motorcycle went by and startled Hailey which caused her to what...oh yah, PUKE AGAIN...all of the bathroom in the restaurant...But it's fine, this is nothing new to me.  I've been puked on and around for 10 years now and to tell you the truth, it really doesn't faze me.  So I send Aubrey out of the bathroom to get the waitress who then comes in and I say, I can clean it up if you get me a mop and some towels (I have definitely cleaned it up before!!)...but she kindly says that she will take care of it (I should send her a thank you note)...so I clean Hailey up, change her skirt into the spare clothes that I keep in my purse for her, wash every one's hands thoroughly and off we go.

We walk around Old Sac for an hour or so after we get the wheelchair and stroller out of the car for the girls.  We can't go into any stores because I know that at this point Hailey will have a ball pulling all of the racks over...that is just the type of mood she is in today so we just walk and enjoy the sunshine and the people walking by...

But ut oh...there is a dog so I swiftly swirl Hailey's wheelchair around and walk her backwards so that she doesn't see the dog (a sure fire way to get her to puke again if she sees a dog that she doesn't know on the street).

After an hour of walking around we load back up and get into the car to go home.  It is about 1:30 by then and the girls need a nap...which is really code for me making them rest while they both wriggle and Aubrey screams "can I get up yet" every 2 minutes for a half hour.

Then they want to swim so I change them into their suits and me into mine, sunscreen them both, put them both in their life jackets and out back to the pool.

Where they immediately start fighting over the pitcher that they like to fill up with chlorine water to water hubby's vegetable garden (shhhh...don't tell him!)...So I find another pitcher and so they each get to water with the chlorine water...Some form of splashing and swimming goes on.

It's about 5 when after breaking up about 25 different battles about the pitchers and the floaties and the rafts that I finally get them both out of the pool and into their clothes then we sit down for dinner which (thank god) hubby has taken care of cooking today (Hailey has an accident in between all of this, I can't forget that).

At dinner, my son and I get into a discussion about whether he can go to the skate park or not and why he can't go and why he can't do this or that and finally he picks a fight with me.  I have a feeling that he is trying to make it so that he doesn't ever have to come home if he makes dinner miserable (fat chance oh son of mine...dinner is a family affair...so there!!)

So then it is clean up dinner and off to shower time for the girls.  So I get them all showered and washed and smelling clean and fresh and Hailey throws up again...uggg.  Will this day just end already????

After 45 of the longest stories in the world, I finally tuck them both in and basically fall onto the couch.  Hubby hands me an extra large glass of wine and I basically pass out right there with it in my hand....Goodnight.  5 am comes awful early after a day like this!!

It is funny how my life has changed from the beautiful fairy tale that I thought it would be to days like this strung together one by one day after day...But I wouldn't change it for the world (well maybe I'd change the 5 am part and I could do without the puking after all!).