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, 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!!

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!!!