Tuesday, January 24, 2012

The World of Special Needs

From the time I was in my teens, I have always been "drawn to" and worked with special needs kids in some capacity.  From Down syndrome to cerebral palsy to muscular dystrophy and everything in between.  I took sign language as my foreign language in college, spent a week at MDA camp the summer after my senior year with a good friend of mine.  It was just part of who I was. 

Then I grew up.  Hit my late teens/early twenties and became very self absorbed, as most do.  Life was all about me and it didn't fit any of my special friends or the kids I'd help take care of.  I'd let myself be talked out of a career in special education or some other position that would put me in the lives of children with special needs.

And then 2011 came.  I found myself unexpectedly pregnant and, boy, was it shocking and hard.  I think I knew about halfway through my pregnancy that something wasn't "right" - but had no idea what.  I sure didn't expect to the minority of a syndrome that affects 1 in 15-30,000 kids.  Nor did I expect it to rip my heart open the way it did.

The emotional girl who had hardened herself because of life circumstances was quickly darting to the bathroom to cry after reading stories of children struggling with or succumbing to rare diseases and disorders.  Imaging my life without my amazing son just is too much to bear - how do these mothers do it?  Angelman Syndrome will not kill my son, thank God.  But it definitely broke down his mother.  Humbled me.  Opened my eyes to the simple beauty of this life and this world and people.  And opened my eyes to the fact that I was wasting my time on things I shouldn't have.

February 29 is Rare Disease day.  While Angelman Syndrome isn't a disease, it is a syndrome, it is rare.  I will be wearing shirts and talking about awareness of rare diseases and syndromes.  Because the autisms of the world are horrible, but there are so many heavy crosses children bear every day that don't get the airtime that some diseases/syndromes get.  Children earning their wings every day.  Energy that needs to be spend stopping the mindless suffering.

I never thought I'd feel so much so strongly again.  Thank you Will, for opening my heart, my eyes and forcing Mommy to stop and smell the roses.   I'm forever in your debt.

On a happy note, my little guy FINALLY clapped his hands himself at dinner last night.  Joining at midline is not easy, which is hard to imagine for able bodied individuals.  I was so excited I startled him causing him to stop but he kept right on going.  I don't know if he'll ever do it again, like most things, but I was so happy I cried!

Enjoy your children, hug them, kiss them, watch them sleep.  It is worth it.

Wednesday, January 18, 2012

Too long gone . . .

Been forever since I've been here, or so it seems.  Officially 3 months and 1 day out from Will's diagnosis and, while things continue to change, there is a renewed sense of peace in our lives. 

This is the healthiest winter Will has seen in his entire life.  The first two were full of hospital stays.  To date, we are only two admissions this winter, although he is steadily on steroids and constantly congested.  Still progress, and I will take it.

We have new care for Will and G during the day.  My sitter got a new opportunity which left me to scramble a bit but I fell into the best possible situation for both my kids.  She loves them and they love her right back, she works on fine and gross motor skills with Will and he gets to play with a low number of kids.  It is really good. 

I have been uber weepy lately, very similar to as emotional as I was when I was younger.  I seem to really be in touch with the mortality of everyone I love and the way horrible things can happen.  I tend to dump everything onto Facebook, but want to try and get this blog up and running.  Would be nice to be able to dump longer than a FB update.

Three months out and the wound still smarts when touched, but I couldn't love my son any more if I tried.

Saturday, October 22, 2011

Can somebody stop the ride please?

To say this has been a whirlwind week would be an understatement of massive proportions.

They say you see a person's true colors when the chips are down.  They also say everyone handles grief/bad news in a different way.  So here I sit, 4.5 days after the news of my son's health hit.  I have cried, I couldn't work for a day.  I have arranged specialists, AFO refittings, change in focus of therapies, starting the application for SS disability benefits for him, am booking an EEG for a baseline, found a neurologist that specializes in Angelman, found a place to buy merchandise that profits Angelman's research, read articles, talked to friends, and consoled family as they cried.  All while working, taking care of G and not really sleeping or eating.

4.5 days out and I feel wrong if I cry.  My anxiety is cruelly kicking me when I am down, every night from the time the kids fall asleep until one or both wake up.  Alone is really bad for me.  What I wouldn't give for an adult to talk to in the evening.  I gave up one of my best friend's, nicotine, almost a year ago.  Good thing?  Jury's still out on that as far as my sanity goes (I obviously know the health repercussions or I wouldn't have quit).

Through this process I got divorced, found some friends, lost others, found a new support family in the Angelman community (who I need to get together with stat) and found that I don't know if life will ever have that shiny new beauty again.  I am forever changed by this.  Both positively and kinda dimly.  I am no longer naive and blindly hopeful.  My sweet baby, so unfair.  Yet, this is all he knows.  This is Will's world and it is SO much happier in Will's world as anyone who knows someone with Angelman's will tell you.  Without him I would not be able to keep my head up, kinda sad huh?  But it is for him and his sister that I do every single thing that I do.

I am trying to move forward, to lick my wounds and keep my head up.  I will tell his story from nearly minute one of his coming to be later.  It is not even 7 am and I have been up three hours.  Sleep forsakes me again - too much to do, can sleep when I am dead.  My angel needs me now ;-)

Wednesday, October 19, 2011

Long week . . .

On the calendar, to the naked eye, this week promised nothing exciting.  Steady week at work, no doctor's appointments, kids were getting healthy.  Then it all went to hell.  Have to leave soon to head downtown to meet Will's new geneticist.  She got us in way quick, I only hope she can give us something to work with in regards to the Angelman.  I have lots of questions, found lots of resources, now to get myself together and do this.  What a roller coaster.

Monday, October 17, 2011

My Angel

After a tumultuous pregnancy, at best, and 5 weeks early the nurse placed this little person in my arms.  My son.  My surprise pregnancy.  My nursing degree lol.  But he was perfect and somehow mine.  It took me a few hours to open my  heart, but once I did I was done.  William Carlysle came into our lives on November 8, 2009.  He was born a late preterm at 35 weeks 2 days but was a good weight of 5 pounds 14 ounces.  Had some congestion issues but no NICU at the time, just an extra day in the hospital.

An amazingly long road led us to his almost second birthday.  Too much to inundate you with now.  But this insane road has led us to his diagnosis, Angelman Syndrome.  The exact extent of his syndrome is unknown as the diagnosis is almost two years in the making but only an hour old.  He is the sweetest, happiest, lovingest, loved little boy and I am blessed to be the mother of an angel. 

I hope you share our journey with us.  I have no idea what to expect or what will happen, but I know my life will never be the same.  It wasn't from the day they gave him to me.