Difficult Things

Someone asked me this week what I found most difficult about having a child with Cri du Chat syndrome.  I have to tell you, I had a really difficult time answering this.  In the end, I think I just stumbled around and didn't really answer the question at all.

So I got to thinking...there are tons of difficult things about having a child with a disorder or any type of challenges.  Some of them are:

She doesn't really dress herself.  Not that she can't, but that she doesn't.  Dressing herself is a really huge deal that generally takes about 2 hours of changing and struggling.  Don't get me wrong, we practice on the weekends and when we have 2 hours to kill but to tell you the truth, we just don't have 2 hours each morning for her to dress herself...So that is difficult, having to dress the 11 year old when the 5 year old is dressing herself and knowing that it will probably be like this forever.

She doesn't really brush her own teeth, her own hair, bathe herself etc etc etc...See above reason.  In addition, although she participates and helps to brush her teeth and hair and bathing and dressing, I have to also do it after her because she just doesn't have the ability to do it well enough on her own.  And the difficult part is, this won't change.  She can learn to do all of these things but an adult will always have to do it again to make sure that she doesn't have cavities or knots and that she clean enough.

She has fits.  Even though they are much less than they have been in the past, fits can consist of biting, kicking, hitting, hair pulling, punching and generally hurting everyone around her.  The difficult part is that they sometimes come on without warning...because someone looked at her wrong, spoke to her, because she was surprised, happy, miserable...you get the point.

She is pretty much always constipated, gagging, refluxing, taking medications or generally worrying her mother (that would be me) to death.

It is difficult to think that at any moment you could get a call that says she is sick and you will be in the hospital for the next few weeks with her.  It is generally difficult to worry about her every moment of every day.  It is just generally difficult to see her struggle and try so hard and fail a lot.

But then I got to thinking, I feel the same way about my normally developing 5 year old, just in different ways...

And I also feel that way about my 16 year old in different ways.

So I think that while having a child with cri du chat syndrome is rather difficult, it is also rewarding.  Just like it is rewarding and difficult to have a normal developing child.

I don't think that there is a good answer to that questions because in reality, if I reflected on how difficult this was all of the time, I would drown in it instead of enjoying it.

And for me, having Hailey is enjoyable when it's not difficult!  Now figure that one out!!

International Cri du Chat Awareness Week

This week is International Cri du Chat Awareness week!  This means that all of the parents and medical professionals that are involved with children and adults who are missing a portion of their 5th chromosome are raising awareness for Hailey's disorder.

As most of my readers know, Hailey was diagnosed with cri du chat when she was about 3 months old.  We got the official diagnosis and had our guts kicked in, just like most other families who have had this rare and unresearched disorder handed to them.  Most doctors and professionals who dole this disorder out do so in a very uneducated way.  It isn't that the doctors don't care or that they are unfeeling or that they want to make us parents feel like crap...That just isn't the case.  The thing is that cri du chat just isn't very well known.  It is one of those chromosomal abnormalities that happens every once in awhile.  Most doctors only come across it once or twice in their careers.  For once in these professionals lives, they are at a loss...and in our experience, they just don't handle that very well.  I would love to say that we were lucky and we got a doctor who knew what they were talking about.  The fact is, that we didn't get lucky and he didn't know what he was talking about.

So when he told us that Hailey had Cri du Chat syndrome, he gave us the same horrible paragraph printed from the same horrible genetics book that most of us parents received during the diagnosis.  It said things like "severe mental retardation", "will not walk", "no communication" etc. etc. etc.  That is the reason that we are having this week of awareness.  And even though I have been emotional spent lately and have not been blogging, I cannot let this week go by without frequent blogs.

There are new children born with Cri du Chat every year.  1 in every 50,000 births so the statistics say.  And every year there are new families that are handed the same horrible old printed out paragraph from the same horrible genetics book that they got in medical school.  Our goal is that we educate these professionals so that they stop scaring the crap out of our new families, so that these families can have not only some hope but also some REAL statistics...some REAL facts.

The facts are that some of our children are really severe.  Hailey sits on the more severe side of the syndrome.  That is a fact.  But she does walk.  She does have some speech.  She most certainly is a valuable member of our community and most definitely a valuable member of our family.  She has taught us all to be better people, to be more accepting and more loving...She is amazing.

To the doctors who told me that she would never walk, I know that you enjoyed when I brought her in to your office and showed you how she ran...and I hope that you remember her whenever you encounter another child with cri du chat in your practice.

To the doctors who told me that she would never speak, I know that you will never forget when she screamed NO and called for "mommy" by name when you tried to take a blood sample from her.

To the doctors who told me to put her into an institution, I know that once you saw the way she lit up her little sisters face when she tickled her that you would never again recommend that for another child with Cri du Chat.

I hope that people who read this will remember my daughter and the next time that they come across the word Cri du Chat or a child with her features, they will know and they will be AWARE!!!

My Happiness Project

Interestingly enough, I have been on a waiting list at the library to get the Happiness Project.  I love the library and I love to read.  I had heard about this book last year when my friend Tiffany at elastamom.com had started reading it.  I had forgotten that I had even put myself on the waiting list...and then it appeared in my inbox, a reminder that it was finally waiting for me!  And what perfect timing.

Lately, I've been feeling pretty down.  I've been trying the mantra "fake it till you make it" but it just isn't working out very well for my internal happiness.  I miss Tracey like crazy.  Hailey has been struggling and recently we found out that she would have to have a second procedure to fix her two front teeth.  Aubrey is a typical, attention seeking 5 year old.  And I'm trying to start a real estate career to boot!

So I was so excited to get it.  I am about 1/2 way into it and it is such a great read.  

I have realized that really, I am pretty happy.  I just don't approach things at with a happy slant.  I have realized that my hubby thinks that I am happy and most of my friends think that I am happy.  So maybe happy is just subjective.  Now it is time for me to appreciate my life for what it is and to wash the ugly internal voice out of my head telling me that I'm not happy "enough".  

It's time to just be Andrea and let that be good enough for those around me.  And for those that don't really like who I am, I am going to have to be happy with that too.  

My Boy

Zachary Edward.  I remember the first day that I held him.  He was such a tiny little thing and I remember how much I loved him immediately.  How I thought, how could I love someone so little so much...someone who I don't even know yet.  I was a young mama and many a days I would think, please don't let me screw this kid up too much.  And despite all of my failures and all of our struggles in the last 16 years, I think he's turned out just perfect...apparently I've done something right!

He turned 16 last week.  He is smart and funny and imaginative.  I am amazed each day at how thoughtful and sensitive he is.  How he cares more about others than he does about himself.  How he still at this age loves his mama and isn't afraid to show it.  He still tells me he loves me all the time and gives me hugs.  As his birthday approached, we decided that he was responsible enough to have some more choices.  So we gave him the choice about coming to the family dinner every night.  You see, one of the most important thing to me over the last 16 years is to eat dinner as a family almost every night together.  And I've held up that promise to our family.  I would say that 70% of the time, we eat dinner together (keep in mind that 20% of the time the kids spend at their dad's homes so it is actually about 90% of the total time they are here...a pretty good average).  But as his 16th birthday approached, we realized that he was coming home to eat when other kids his age were still outside hanging out.  So after offering him a choice, he chooses to eat dinner with us every night anyways...amazing!

Oh my how he has grown!

Every day I am so proud of the boy he was and the man that he is becoming.  Even though I've asked him time and time again over the last year or so to please stop growing up so fast, he is quickly growing into a young adult.  In a few days, he will be getting his license...in a couple of years, he will be off to college and starting his own life.  I only hope that I have prepared him well enough...that I have given him enough guidance to make the best of decisions.  

To my son, Happy Birthday and thank you for making me the proudest mama in the world!

Happy Birthday Aubrey Anna

Today our little lady turns 5.

Five years ago, we patiently waited for her to come.

And when she did we were instantly in love. 

  

 Soon enough, she turned 1 years old.

 And when we blinked...she was suddenly 4.

And then today she turned 5...my little baby growing up so fast.  

I have a feeling that I'm going to blink and she will be 22.  It reminds me that I need to slow down time a little bit and remember to enjoy her little sassy 5 year old attitude and give her lots of snuggles.  It reminds me that I can never allow her to get lost in the in between of every day life.  She is our joy.  She completes us.  And she will always be our baby.  Happy Birthday little Aubrey Anna.  You are a special girl and a shining star.

An Open Letter to our Enemy...BOTOX

Dear Botox,

I hate you.  That's right.  I said it...hate.  Such a strong word, I know.

The first time you worked great and you tricked us.  But the next time you did not.

You, you horrible poison...you poisoned my daughter and wreaked havoc on her already delicate system.  You made it so that she could not do the most basic thing...swallow and eat.  You tried to hide behind a little cold.  Behind a growth spurt.  Behind her disorder.  Behind underlying conditions that might have been the cause.  But we have found you out.  We now know that it WAS you.  It IS you.

Because after exactly 6 months, she is better.  She can eat again.  She can swallow.

Now you are gone...for good.  Out of her system.  You, you little poisonous vile are history.  Never to be used again in our family or in our friends.

Good riddance!

You tried to ruin her.  To ruin us.  But you cannot.  We are stronger than you.

She passed her swallow study yesterday with flying colors and will begin to enjoy all types of food again...no thanks to you!

I can only hope that other moms and families and doctors will learn from this and start to consider the possibility that you can leave destruction in your wake.  At least maybe next time, the doctor will warn the families that you can be dangerous.

See ya.

A very very relieved mom

R is not for retarded....

REPOST FROM 2010

Don't say that word around me.  It may earn you a punch...It will at least earn you a lecture.  Don't call it the R word or anything else.  Expel it from your vocabulary.  Just stop using it.  Friends of mine have long ago learned that a stern lecture is not what you want from me.  It offends me.  It just does.  I shouldn't have to explain myself.  It would be like me using your name or hair color or race to describe someone who was acting ignorant or ridiculous.

My daughter has mental retardation.  That is true.  That is the medical definition.  The words written on her IEP, in her medical charts.  Accompanied by Cri du Chat, Autism, Sensory Processing Disorder, 50 D Hearing Loss...etc etc etc.

Don't say that word or use one of her diagnosis in order to insult your friends or describe something ridiculous.  It is not cool.  It makes you sound horrible.  I cringe.  Do you not see me?  Do you not see my son cringe?  Do you not hear me say that I don't appreciate it?

Stop it...Don't use that word around me.  Don't say that word at all.  It shouldn't even be in your vocabulary unless you are using it correctly.

R is for RARE
R is for RADIANT
R is for REYANN
R is for RED
R is for RADICAL

R is for lots of things...it is NOT for retarded...get rid of it from your vocabulary...it doesn't belong there.

Swallow Study Number 3

Hailey has a swallow study this morning.  We have been anxiously waiting for this one.  Well, to be honest, we waited anxiously for the last one too.  It took Medi Cal a little longer than it should have to approve the study this time.  I guess there is no precedence for having 3 of them in a 6 month period of time.

But the thing is that 6 months was the magic period where the botox was supposed to wear off and low and behold...It appears that it has!!  So this one is much anticipated because she has been eating so much more by mouth now and we are down to 3 feeds a day instead of 6.  We are really hoping that this study will show that she is swallowing just fine.

I know that she will have to go through feeding therapy and she will have to learn how to slow down and chew again.  I know that we will still have to use the g tube and that a good swallow study will not mean that she is good to go all the way...But it's a great step in the right direction.

So here sits one mama who is trying hard not to get her hopes up too much...but can't seem to keep her head out of the clouds!!

The Giant Teddy Bear

Yesterday my little lady and I set the alarm clock for a ridiculous hour and set off for the hospital before the sun was even thinking about coming up.  Right before the swallowing fiasco and the feeding tube, she fell at school.  The new classroom didn't have the aide with her like they were supposed to and she was running and she fell...right on her face.  The teacher called me and told me that she fell and she was fine.  She then mentioned that she was bleeding a little.  So I went to the school thinking that I was going to kiss some boo boos.  What I found was that she had broken her front two teeth and continued to bleed from her nose and from her mouth.  So needless to say, we rushed to the ER.  After checking her out, they felt that she could wait to see the hospital dentist.  So we made an appointment to have them repaired...but then before the surgery appointment, she had the trauma of losing the ability to swallow and we had to cancel the appointment.  

We rescheduled her surgery finally for yesterday...at 5:30 am!

Hailey has all of her dentist stuff done at the hospital under sedation.  Technically she can get her teeth cleaned in the office (my mother in law is a dental hygienist) but she won't let anyone near her to fill a cavity...so the hospital it is...and what a wonderful hospital it is!  

We are so in love with this place.  I know that it is not necessarily a good sign that all of the nurses and doctors and receptionists and even the gift store lady know her name and recognize all of us...but when they do things like they did for her yesterday we realize how we don't appreciate them enough.

The child life specialist brought Hailey a movie on a little dvd player while we were registering her...then brought her a giant (and I do mean giant) bear and put it on her hospital bed so that it was there when she got into the room.  Just these small things make her so happy and make her so comfortable...and when she is comfortable, this mama bear is happy!

It is horrible that she has to go but wonderful that the hospital staff makes it so comfortable for her to be there.

This was the first appointment that I sat in the waiting room by myself while she had surgery.  It was pretty scary.  It was so early and my mom was watching the little one and my hubby had to go to school and I just didn't think that it was going to be a big deal...but it was.  I was scared being there alone.

And then I got some bad news.  The dentist came out and let me know that he could repair the teeth on the surface but they needed a specialist to do the root canals because the injury caused so much nerve damage.  Not a good thing.  It took me until 4:30 pm yesterday to find a specialist who would do it in the hospital and take her medi cal and insurance but I found one...so back we go to the same place to do the same procedure in a month or so.

For now though, she has two beautiful front teeth that she thinks are pretty neat...and a giant bear that is sleeping with her next to her giant dora right now.  As long as she is a happy girl, I am a happy mama.

For the 5 P Minus Society's Newsletter

I wrote this for the newsletter which came out today...

She was born 11 years ago.  Hailey Reyann.  Eleven years ago, we walked into the hospital in Sacramento full of hopes and dreams for our little girl.  We were so excited to have her and her big brother couldn’t wait to hold her!  She came into the world small, not breathing, with a little tiny head and moles all over her ears.  She was blue.  The nurses were yelling at my sister to turn the video camera off.  We didn't really understand the words coming out of the mouths of the doctors and nurses.  I specifically remember thinking that I could see their mouths move but they weren’t saying anything...microcephaly...What in the world is that??? They said out loud...ear tags...What are those???...Genetic counseling, a neonatal specialist, specialty nurses...It went on and on.  The next few days are a blur of feelings and crying and worrying and measuring other people's heads.  Yes that’s right, measuring other people’s heads!  You see the geneticist informed us that small heads (microcephaly) can run in families and doesn't necessarily mean that there is anything to be worried about.  He said that he would see us all in three months to see how she did.  So, we walked around for three months measuring every family member's head...charted them and brought it in to the geneticists office at that three month appointment.  The appointment went well.  Our little girl was growing steadily, if not quickly.  She was developing, if not quite to the normal standards...etc etc etc.  Her dad, big brother and I packed up our things from the geneticist office, with our little girl given a clean bill of health and started out the door.  But before we could get out the door, we were stopped when the doctor asked "HOW DOES SHE CRY?"  I turned and said, "like a kitten, everyone says so".  Shockingly, the geneticist says, "SIT BACK DOWN PLEASE" and began explaining about a "disorder" where the babies "cry like kittens".  I really did think, “You are kidding me” but I couldn't make anything come out of my mouth....Besides sobs.  And there it is, our little girl was tested and found to have Cri du Chat Syndrome...

As I sit here now and think about it 11 years later, I still sob thinking back to that moment.  It is the moment that my life changed, that my family's life changed, that my son's life changed, that my marriage changed, that I changed.  I had to become smarter in order to navigate the strange new world and learn this new language.  I had to become stronger in order to get out of bed each day and face the questions, the concern, the pity, the whispers in the corner, I had to become softer for my son so that he wouldn't notice that I was becoming harder to everyone else.  I had to protect myself, my daughter and my son...It all came down to change.

The best laid plans...you can usually count on those not working out.

Just like when we planned to have a perfect little baby.  We planned to have a perfect little girl who loved ballet and girl scouts.  She would get married to a very handsome young man after she finished up her college life at Yale and became a brilliant lawyer.  Losing those plans, those dreams for her were some of the hardest parts in this journey.

After the shock wore off and we were able to do some research, we realized that a lot of what the geneticists and doctors had told us were not absolute.  They told us that she would never walk, that she would never speak.  We even had one doctor suggest that we give her up!  Once we started learning, we realized that early intervention was a miracle for children with cri du chat.  We got her started in physical therapy, warm water therapy, occupational therapy, speech therapy, feeding therapy, etc as soon as we could.

First she began to roll over and then to scoot and then a little crawling and finally walking.  She was able to pick things up and put things into containers.  Picking up her first cheerio was one of those moments that is burned into my memory!  All of those little milestones that parents don’t really think about were huge successes for her.

Now at 11 years old, Hailey is a very happy and well adjusted fifth grader.  She walks and runs and hops and even tries to skip.  She dances and loves music.  She is still learning things every day and we are so proud of her.  Hailey is learning how to speak now and has had hearing aides for about a year.  She loves babies and barbies.  She loves swimming, boating and most of all rollercoastering!  She has no fear and has been going on rollercoasters since she was tall enough!

She will never become a lawyer or go to Yale.  She will never meet a handsome prince and get married in a white gown.  She will never do many things that we planned for her in our dreams while I was pregnant.  But when you think about it, does any child ever fit into their parent’s dreams?  I’m sure that my parents dreamed of me going to Yale and getting married in a white gown to a prince and becoming a lawyer and I did none of that! 

So we are just lucky to have her in our lives.  We are lucky to feel her love every day.  And I feel especially lucky that although she doesn’t speak very much, she can say ‘Mommy’ clear as day!

Rollerskating

I love when we find something that our entire family loves to do.  Last year, the 4 year old and the 15 year old had their birthday party at the skating rink.  I was so nervous about how Hailey was going to do that I had her behavioral assistant come to the party with us.  Boy was I surprised.  I guess that the fact that she had to focus so hard to stay up on her feet made it impossible to do anything else.  So negative social behaviors were non existent that day!

We have gone just one or two times since then and every time I think, why don't we do this more often?  She absolutely loves it.  Yesterday we were invited to a birthday party (Happy 8th Birthday S!) at the skating rink and once again Hailey loved it.  And once again, I pondered why we don't go often.

She smiles so much and laughs.  On the carpet at the rink, she can pretty much stay up on her feet all on her own.  This is always so amazing to me.  I mean 11 years ago, the doctors were sure she would never walk and here she is SKATING!  Once we get onto the rink, the floor is a bit more slick so I have a system of holding her up.  I hold my arm under her armpit and then hold her hand with my hand and basically it is like a moving crutch. The rinks in our area allow me to walk on the rink in my tennis shoes so that I can help her.  It is amazing.  She dances to the music and laughs.

I think that one of the best parts is that all of the other kids are so busy falling on their butts too that no one has time or the energy to look funny at Hailey.  It is the one social setting that we never get the weird looks from the little kids.  They are just impressed that she is on her feet while they are on their butts!  It is also a place where I get to smile continuously because she is having so much fun.  Other adults stop her and tell her how great she is doing.

If you haven't had the chance to take your children skating, I highly recommend it.  I worked there when I was in high school and for a couple of years afterwards.  I met my son's father there and basically grew up there.  Maybe that is why I have such a happy feeling there.  But all in all, it is amazing to just see her do something that no one every believed she would do!

And the "why don't we do this more often" question...well I also always forget that I can barely lift my arms up the next day from holding her up on the rink for 2 hours straight!!  I guess there needs to be months in between so that my arms can heal!

I hope everyone has a great Sunday morning!  And Happy Super Bowl!

Can we get some PEACE??

It is looking like we may be on the brink of peace with a splash of tranquility!  Go ahead, read it again.  Yes, you did read that correctly.  Miss "glass half full" has a positive attitude.

 

Reason Number 1:

Hailey started a new school last week.  We fought a long hard battle to get her there and we did it!  It wasn't easy and in the end it was hiring an attorney that really did the trick.  Hailey doesn't test well and she doesn't assess well.  On paper, it looks as though she is much more delayed than she actually is...so much so that they really didn't think that she would fit into this new school...but I knew she could do it.

And so I fought...and so we won!

After five days at the new school, she is happier and better adjusted than she has been in so long.  We have never felt like her placement has been good for her but there were never any other options.  I have literally been fighting some sort of school district battle for over five years.  But not anymore.  One of the best parts is that she can stay until she is 22!  

I am so excited...have I said that already??

Reason Number 2:

Hailey is drooling again.  I never thought I'd be excited for drool...but I am!  This means that the botox is wearing off and we will finally be able to see if she will regain some of her swallowing skills.  The hope has always been that once the botox was gone the swallowing would return and we could eventually lose the g tube. And it is looking like we will be able to find out soon!  We have a new swallow study scheduled for the beginning of March and until then, she has actually started to eat and swallow baby food and applesauce textures.  All in all the swallowing is much better than we were expecting at this time.

Reason Number 3:

We found a respite worker!  She is wonderful.  We had to move towards agency respite because they cut off family respite in September.  This meant that for the first time, I would have to hire a stranger.  Hailey can be very difficult at times and I was nervous but our new girl is awesome!  She can't do anything with the feeding tube due to the respite rules but that is ok.  Tim and I went on a date night last night and had an amazing dinner and movie while she sat with the kids...and the kids were already asleep so they never even knew we were gone!

Reason Number 4:

I joined the PTO at Hailey's new school.  I have been struggling with finding other women and moms to connect with.  The fact is that I live in a different world then most people out there and I just have trouble connecting.  At this new school, all of the children are special needs so I can connect with them on so many levels!  I also am very passionate about event planning and this gives me the opportunity to use some of my very out of practice skills!

So you see, it is like we are on the brink of having it all!  And by having it all, I mean that I'll be able to go to the bathroom on my own once and awhile while Hailey is in school, Hailey may eat by mouth again, Hubby and I may be able to reconnect again and I may actually find some friends!

MY ROCKSTAR

My girl ROCKED today!   

We had the opportunity (we shall call it an opportunity even though I literally forced this) for Hailey to visit an all special needs school in our district.  When Hailey was little, I was determined to make sure that she was mainstreamed in a regular classroom with a full time aide...and I made that happen for her the first year.  It was apparent after Kindergarten that this plan was no longer going to work.  She was falling further and further behind and being left out by the children.  Not because those children were mean or treating her poorly but because she just couldn't keep up. For first, second, third, fourth and the beginning of fifth grade, she has been in a special education classroom on a regular education campus.  There have been tons of problems and she just hasn't really fit anywhere.  So, we were excited to have her visit this new option.

The catch is that the children there are a little bit more independent than she is and a little more advanced.  So she had a visit today where she got to "try it out".

And she did perfectly!  She sat at the desk assigned to her, followed all of the directions, did the assignments, participated in the PE (which was bowling...her favorite thing!!), stood in line, took her own jacket off!  YAY!  

I am so proud of her.  

And she got accepted into the program!  YIPEE!!  

The kicker is that they offered her start date to be January 30...which is Tracey's birthday.  I have to say that Tracey must be pulling some strings in heaven and making sure that we all are taken care of.

Lightening Speed

Hailey loves her sister so much and Aubrey loves her.  They have a bond that is undeniable and I love to watch when the connection between them shines through.

The truth is though that Aubrey is starting to pass Hailey up.  And that is sad to watch.

Hailey will be 11 in less than a week...and in less than 2 months Aubrey will be 5.

Aubrey has started to play with her barbies in a different way.  The barbies talk to each other and they are set up a certain way.  When Aubrey plays baby dolls, she dresses them up and changes their clothes and pretends with them.

Hailey is still at the point in her playing that she just repeats the same thing over and over again with the barbies.  When Hailey plays barbies, the barbies walk up and down the stairs over and over and over and over again.  She may play with them but she doesn't understand how to make them sit down correctly and she doesn't understand the games that Aubrey is playing.  Hailey has trouble dressing herself, so imagine when she wants to copy her sister but she can't figure out how to change the dolls clothes.

It is all very frustrating to them both. 

Aubrey is also starting to get frustrated with Hailey.  Hailey tends to be a bull in a china shop at times.  She bulldozes her way into Aubrey's room with no regard to the game that Aubrey just took so long to set up.  Aubrey is getting to the age where she wants her "privacy" in the bathroom.  She doesn't want her eleven year old sister following her everywhere...especially not when she has to go potty.  She doesn't want to match her clothes anymore.

I understand Aubrey's frustration.  She is going to be 5.  She is trying to figure out who she is and have some individuality.  

The more Aubrey tries to get some privacy, the more Hailey wants to be with her.  It's like when you were little and sitting in the back seat with your little brother or sister and they kept touching you...and your mom told them not to touch you...so they put their finger as close to you as they could and then said, I'm not touching you, I'm not touching you.  Yep, it's like that at our house a lot lately...Only it's the reverse.  It is the big sister driving the little sister crazy.

They are reversing roles and I don't like it...but there's not a thing that I can do about it.

I can't force Aubrey to play with her.  I don't want to put Aubrey in the position that she is playing with her because she feels sorry for her or anything.

I think that I just have to come to terms with the fact that it is time.  It is happening.  Hailey hasn't gotten past that 5 year old developmental level yet and Aubrey is passing her up at lightening speed.

These are the things that make me cry at night.

What if Hailey needed a transplant?

Yesterday I read a story on my facebook about a little girl.  A little girl, much like Hailey.  She has a disorder that causes cognitive impairment...and she will need a transplant.  Please click here and read this, like I did.  Then like I did, get outraged.  Can you imagine if Hailey was denied a transplant because someone else decided what her quality of life would be?

It's noone's fault but my own

There are days in this life where I am down and there are days where I am up.  I mostly write about the down days because to tell you the truth those are the moments that I need support.  I need to get those days out of my head so that I can move on to the next day.  Those are the days that I need to write down.  Occasionally I have a really difficult day (like yesterday) where I would rather crawl back into bed and hide underneath the covers...where drinking an entire bottle of wine alone in my room sounds divine.  

I don't do rejection.  It really sends me into a tailspin.  I am sure that a therapist would have a field day with me! I am sure that they could take apart my childhood and dissect it and tell me why I freak when I feel like someone doesn't want me.  I am sure that they could blame a hundred people in my past for the reaction that I have when I start a cycle of self loathing.

But does it really matter why I do it.  And at this age is it anyone's fault but my own.  I am quickly sneaking up on 40 years old.  That means that I have evaluated my own breakdowns more than I care to admit.  16 years ago, I let that feeling run my life.  Then again 8 years ago.  3 years ago, I was close to letting it tail spin me again but I held on.  That self evaluation over the last 15 years has enabled me to recognize when I am losing it.  It allows me to give myself those few hours (or longer if necessary) to recover.  It means that I know that I shouldn't have interaction with people if I don't have to until I can get myself under control.  It means that I need to let myself cry and feel the rejection in the moment.  If I push it off for too long...it gets the better of me.

So yesterday, I got rejected.  Today, I won't be rejected.  I'm over it.  I gave myself the chance to cry under my covers watching general hospital and feel sorry for myself for a few hours.  Then I got up and resumed my life.

I used to be someone else.  I use to find jobs easily and have a passion.  I use to do more than just this.

Don't get me wrong.  I love being a mom and I love being a wife but staying at home and being a stay at home mommy was not in the plans for me.

None of this was.

I started looking for a new job in October 2008 after the yacht chartering disaster job and couldn't find one. A combination of no longer having a current work reference and the shit tanked economy and it was a no go for me.  I interviewed...a lot.  And I failed...a lot.  I always made it to the last round of interviews.  You have no idea how many times I heard "we are going a different direction".

I came to terms with the fact that I wasn't going to find a job in the current economy so I just stopped looking.  I couldn't take the rejection anymore.  It was awful...over and over and over again.

But I decided a few months ago to try again...and I got an interview and then invited to the last round of interviews.  Of course it was between me and 2 other people.

I got the news just now.  And the woman used the same words "we are going a different direction".

I hate looking for a job.  It is devastating.  I can hear everyone's positive support words now, you'll get the next one, keep trying...etc etc etc.  But I can't.  I'm not that strong.

These are the days that I hate.  The ones where everything is plugging along just fine and then something pushes you off the ledge you were teetering on.  I need a passion.  I need something.

17 weeks

Hailey hasn't been in school since September 12th.  That horrible day when she couldn't swallow.  It has been 17 weeks today since she left school that day.

17 weeks.

And I wonder why I've been so exhausted.  

Right about that time, I got a letter that the regional centers weren't going to be letting parent vendors handle their own respite hours anymore and that any respite workers would have to go to an agency...and couldn't handle any g tube or ng tube issues.  So basically, I lost all of my respite hours at the same time that she stopped going to school.

Besides every other weekend that she goes to her dads and the week that she spent there at Christmas, she has been with me 24 hours per day.  24 hours.  It is wearing on me...on us both.

I love this girl more than my heart can bear at times.  She is so amazing and has come so far.  I quite literally can not imagine my life without my little lady.  This girl who we were told wouldn't walk, or learn...who we were told we should put into a special home...who now runs most places and who is smarter than most of the therapists who work with her and can manipulate the world in such a unique way...She makes loving her so easy.

But how many of you with ten year olds yourselves can say that you would be able to spend 24 hours with them for 17 weeks?...She needs to go back to school!!!

I've been fighting for a different placement coupled with a one to one aide with her to monitor her so that she  won't try to sneak food while no one is looking...And I do mean fighting.  Tomorrow, she gets her chance.  They are going to let her come for a trial day at a school in our town.  I think that she will really fit there.  They are thinking that because of her special supervision needs that she wouldn't be a great fit but I disagree.  They don't know her and I do.  I am really really hoping that she can do well at this school.  

So if you are reading this, please keep us in your thoughts tomorrow.  She needs friends and she needs school and she needs to learn.

Meds

Hailey has a ton of medical professionals who she sees.  I have a list on the inside of the cupboard which houses all of their names and numbers.  On that list is all of her medications and emergency information too.  This list use to be a half of a page.  Since the crazy day when she suddenly lost the ability to swallow, that page has grown to be an entire page.  There is also another page on the other side of the cupboard which has instructions for her g tube and how to operate the feeding pump...just in case of emergency.

I say this because I am really good at listening to directions.  I am obsessive about following a schedule for her feedings and medications.  I do exactly what the doctors tell me to do.  If I have a question or don't think something is correct or working for her, I will call that doctor and ask them.  I trust the doctors.  I do my research on things and check what they are saying but I need to be able to rely on them.  I've talked about how even though some doctors have made mistakes, I have to trust them...what other choice do I have?

So the list of doctors goes like this...pediatrician, orthopaedic surgeon, gynecologist, ent, audiologist, opthomologist, rehabilitation specialist, neurologist, geneticist, 2 pediatric surgeons, gastroenterologist, dental surgeon and feeding specialist.  They all have special instructions and I write them all down, double check them and then work them into our schedule.  She sees four of these doctors at least once a year, four of them twice a year, three of them are every 3 months and two every month.

One of these doctors put Hailey on reglan while we in the hospital.  We spent 9 days giving her the reglan and four times a day, the nurses gave it to her with her feeds.  They specifically told me that the prevacid was to be given one time a day 20 minutes before feeds but the reglan was with or right before the feed.  The other day, I was looking online for a new doctor for a second opinion.  This doctor seemed to not really care when I called or brought her in and kept telling him that during every feed, there were residual stomach contents in the line when we started.  He kept telling me that as long as she was making weight gain that it was fine.  But she was still vomiting...a lot.  So while I was looking for a new doctor, I also googled reglan to see if she was receiving the therapeutic dose.  Many doctors start children like Hailey on less than therapeutic doses and then gradually increase depending on how they do.  So I wanted to know if she could get a higher dose.  When reading the medication recommendations, low and behold I came across something very interesting.  The recommended use for reglan is to give it 30 minutes before a feed...not at the same time.  So I called the doctors office and left a message.  And of course he didn't call me back (and still hasn't after 6 days).  So I started giving it to her 30 minutes before on my own and MAGIC!!  She hasn't vomited again at all...In 6 days...nothing!  And she is gaining weight beautifully.  And I have been able to up her feeds a little bit.

So the point is, sometimes we can't trust all of the doctors.  Her surgeon put in a request for a second opinion from another doctor and we have an appointment in a couple of weeks.  It just irritates me that something so simple wasn't conveyed to me.

A Very Scheduled Family

Dear Preschool Teacher,

I am very sorry that I can not stay for your impromptu meeting that you decided you desperately needed all of us parents to be at.  Unfortunately, my day is like a carefully arranged puzzle.  Please do not glare at me anymore when you say we must stay and I sneak out the back door as soon as I have the four year old signed in and settled.  I realize that to you, this meeting is the most important thing that is happening today.  I also realize that I have won the worst mother in the preschool award for basically ignoring your request that we stay for a few minutes (which always turns into at least 10 minutes).

You see, I can understand why you think that you need to tell us (once again) that we should stay in a single file line and sign our children in.  I can understand that you need to tell us (once again) that we should clean out their file folders each day.  I can understand that you need to tell us about the class policies every other week.  It appears that some of the parents can't get the basics the first time.  I know that what you say is important and that many of these parents are new to the preschool world.  It is just that I really don't have time for repetition.

I woke up at 5:00 am and jumped in the shower.  At 5:30 am, I was ready to tackle the world and gave my ten year old her first round of meds through her g-tube.  At 6:00 am, I woke her up and took her potty and then hooked her up to her feeding pump. At 6:15 am, the 4 year old came down the stairs and wanted breakfast so I gave her some french toast and juice and then emptied the dishwasher.  I straightened the living room and then woke the hubby up at 6:30 am.  At 6:45 am, I unhooked the ten year old from the pump and took her to the potty (again), then woke up the teenager for school.  At 7:15, I had dressed both girls, made all of the beds, started a load of laundry, poured my third cup of coffee in my travel cup and was out the door.  I buckled the ten year old in and made sure the 4 year old was buckled in her car seat and away we went.  We made the 45 minute drive to the 8 am appointment for speech therapy, where I shamelessly read blogs and a magazine and played on facebook.  At 9 am, we were on our way back home.  9:30 was the second round of meds and 10 am the ten year old was hooked to the pump again.  The girls did artwork and  I folded and put away 2 loads of laundry.  At 11 the ten year old was detached from the pump and I took both girls potty...and away we went again.  We repeated the get in the car routine for the third time today and then we drove to physical therapy.  At 11:30, we ran the ten year old into the therapist (literally, we ran) and then the 4 year old and I ran back to the car and made the 15 minute drive to her school.  (insert the request from you to stay for the meeting).  I shamelessly ignored you and signed her in, kissed her and ran (yep ran again) back to the car to make the 15 minute drive back to the therapy location in time for the 12:15 pick up. I made it with 1 minute to spare.  My day went on in pretty much the same manner until about 7:00 that evening...where I sat on the couch to watch tv and promptly passed out.

So you see, I had exactly 1 minute to spare for your meeting.

Now that you know all of this, can you please stop glaring at me when I ignore you.  I promise it is not because I am a horrible mother or that I don't care about your rules.  It isn't that I wouldn't stay and explain if I had time.  It is just that I don't have the extra time.  Rest assured if you actually schedule the meeting, I will make arrangements to be there.

Sincerely,
The Mommy of a Very Scheduled Family