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...