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!!