Wednesday, May 16, 2012

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, 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!!

Monday, May 14, 2012

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!!!

Thursday, April 12, 2012

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 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.  

Sunday, March 25, 2012

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 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!

Wednesday, March 14, 2012

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 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.

Saturday, March 10, 2012

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 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 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

Friday, March 9, 2012

R is not for retarded....


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