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Monday, December 17, 2012

No School Today- Thinking of the children lost

Skipping work and school today in memory of the kids and teachers that lost their lives at Sandy Brook Elementary.  The pain those parents and family members must be going through... it's incomprehensible.

I worry about Jonah everyday, how long will he live?  Will he be in pain?  Will he be part of a clinical trial?  Will that trial be invasive and dangerous?  Will a treatment come in time?  Then I worry about him getting hit by a car. Now a bullet....

When I was 11 my Grandma was diagnosed with a terminal brain tumor.  We lived with her at the time, I watched my brilliant and talented Grandmother wither away.  When my Dad shot himself. I contemplated the only two deaths of my loved ones. I thought that I would rather have someone that I loved go fast rather then watch them slowly demise. My Grandma didn't know who I was at the end.  The last few months of her life she said every day: "I wish I would just die."

My Dad didn't want to live anymore, he didn't want his family to see him depressed or be a burdened on them.  Dad had a gun, Grandma didn't.

Where am I going with this?

When Jonah was diagnosed with a fatal disease. I took back my decision- that I'd rather have a loved one go fast so that I didn't have to watch them die.  I want to be by Jonah's side for every laugh and tear.  Is that selfish?

My heart goes out to those parents that had their children's lives snatched away from them.  I wish I could do more.  Today Jonah and I will goof off all day. We'll play tag and laugh.  Make Christmas cookies and eat cookie dough until we have belly aches.  My little cookie eater is up now, time to get busy goofing off.

Wednesday, December 12, 2012

Stop trying to sell crazy here, we’re all stocked up.

Stop trying to sell crazy here, we’re all stocked up.

Seriously, it’s time to take a break.  It has finally sunk in that Jonah isn’t going to die tomorrow and that he’s in the prime of his life right now.  I might loose my mind working at this pace.  One of my clinicians told me right at the start: “Ally yourself with the medical professionals who can advise you, so that you don’t look like the crazy lady trying to cure Sanfilippo by herself.”

It has been brought to my attention that I do come off as crazy.  Last week I had an appointment with an art director, my friend introduced us and came to the appointment.  I dove into my agenda and needs, never pausing.  When I did finally stop, my friend told the ad exec: “Sorry, Jill’s always like this, I run into her on the street and ask her how she’s doing and she just brain dumps on me.”

I run into friends on the street all the time and give them an update that is way more then they had bargained for.  One friend told me: “Geez Jill, everything in your life is a matter of life or death.”

Last week I was walking Jonah to school along with another parent and his son, Jonah’s classmate.  Jonah started running down the street.  I ran after him.  When the Dad caught up to me, he asked if Jonah always took off like that, I said yes.  He told me that he has a down syndrome nephew that used to be like that, but he grew out of it. He told me Jonah will eventually slow down too. I told him: “Yeah, because the disease that Jonah has is fatal.” He was dumbfounded, not knowing what to say he walked along dazed.  I felt bad, why did I have to say that? 

Seeing myself through the eyes of my peers has helped.  The constant panic attacks that I’m not going fast enough, is going to put me into an early grave.  The icing on the cake Roy’s recorded testimony.I attached the video of  Roy’s testimony on capital hill, a speech that he made to congress leaders, FDA and heads of Biopharmaceutical companies. Watch the video, it might bring you to tears but it will give you a good sense of what it is that families like ours are up against.  For me... It really hit home on a more personal level, enjoy Jonah now.  Reed was diagnosed with type A about 10 months after Jonah’s DX.  During that time, Reed has gone from using his words to express his needs to having to rely on gestures to communicate.

Without a treatment in Jonah’s near future this will happen to my family too.  I don’t want to have missed the good times, panicking. It's a fine line that I live.

The past 6 months have been really rough, Jonah has entered the ‘hyper’ stage of the disease.  I have been racking my brain as to how to deal with it.   I can’t control  Jonah in public settings.  He’s gone in a blink of an eye.  Nothing I can do or say will divert him.  He has no sense of fear, traffic doesn’t bother him, in fact he likes the traffic so much he’ll attempt to get in a car stopped at a red light.

I have given great consideration to getting a service dog, but a big dog in our 600 square foot apartment... A few weeks ago I had to take Jonah out on an errand.  As soon as we got off the bus Jonah saw some older kids running, it was getting dark out and the sidewalk was packed with people.  Jonah took off after the kids, I wasn’t even off the bus yet.  I ran after him, but I couldn’t get the people out of my way fast enough.  Jonah was a few feet away from the curb when a teen aged boy rose to the occasion and caught him just as he stepped into the street.  That’s when I thought of a service dog, the dog could get through the people and grab Jonah by the tail of his coat. People passing by might actually pay more attention to a service dog and try to stop Jonah.


"Hey, I'm a pet."
Eating, chalk.

My Mom designed us vests that we can attach a leash to.  I used it for the first time yesterday.  We were way uptown at the Presbyterian Hospital it’s a HUGE hospital with several connecting buildings, lots of emergency vehicles coming in and out.  The leash was awesome. Jonah stayed within a couple of feet of me.  He still climbed up on the retaining walls and jumped in all the mud puddles available, but he didn’t run into the street, nor did he mind the leash.  He said: “Hey I’m a pet.”

When Jonah ran into the gift shop and tossed the stuffed animals to the floor, the other shoppers politely smiled and picked them up.  When Jonah drop kicked the life sized stuffed dog across the store, the shop keeper smiled and said: “That’s ok.”

I could get used to this kind of understanding attitude, but we were in the Neurological disorders department of a pediatric hospital.  I have yet to use it in my neighborhood, not sure what my community might think.  But like Grandma said they probably will be envious that they didn’t have the nerve to do the same.

It’s been very difficult to absorb the mental changes happening with Jonah.  I broke down and took him to a psychiatrist to discuss meds that might help control Jonah’s impulsivity. I can’t deny that this is happening and it’s only the beginning stages.  Some of the horror stories that parents have of their Sanfilippo kids hyperactivity and fearlessness would make you loose sleep at night.

One child ran into the street and was hit by a car, broke several bones in his body, amazingly he survived.   Another child liked to jump on the oven door. His Mom started to use a bungee cord to hold it shut, one day the system failed and her son jumped on the oven door and pulled the whole oven out from the wall. 

Many families have created safe rooms in their homes.  Our families post pictures of the modifications they have done to their homes to damage control their kids.  Double dutch doors to keep them in one room but within visibility, plexi glass over all book shelves and entertainment centers, one family built a corral around their open kitchen so their kid couldn’t access anything dangerous. Many Sanfilippo children are compelled to push anything and everything off shelves, tables or counters.  These precautions go above and beyond baby proofing.

Anyhow... I’m just trying to paint a picture of what the behavior is like. Now imagine living in Urban New York, where you have to walk everywhere.  The streets and sidewalks are dangerous for those without disabilities.  Walking to school is a nightmare.  Jonah climbs up every ones stairs, tries to open peoples doors, looks into their windows. Jumps in every puddle, runs into every store.  Lays down rolls on the filthy sidewalk.  If he has to pee, he pulls his pants down and pees right there.  When Jeremy or I try to drag him home, Jonah screams: “HELH HELP, somebody save me, anybody.... come save me.”

When not in public Jonah is brilliant and is the sweetest loving kid.  Always happy and friendly.  The Psychiatrist mentioned several times, that Jonah’s disposition was wonderful, he was impressed with how polite and attentive he was.  Jonah sat down and introduced himself, shook his hand and asked the doctor what his name was.  He wasn’t in the least bit stubborn, he answered all the doctors questions.  He drew for him, counted and wrote his name.  I was so proud of him. My sweet little boy. 

Just now Jonah’s speech therapist popped out to tell me how excited she was.  Jonah had just validated her theory of children with auditory issues had problems drawing and describing pictures.  She proclaimed that Jonah did not have auditory issues!  She asked Jonah to draw a couple of different things and to tell her about it.  Jonah drew a car with wheels, a seat and a passenger.  He made the front and back license plate and told her that those were the #’s and letters.  He drew a picture of himself using a different color for his hair and eyes.  His speech therapist was thrilled, his comprehension and attention to detail and ability to express everything he drew and saw was spot on.  He even drew a side walk with a kid playing with his toy.  I tell yeah if it wasn’t for this forsaken disease, Jonah could be anything he wanted to be. 

Normally praise like this would make me want to run straight home and get back to work.  Not today, Jonah and I are going to go home and draw Christmas Trees.  I’ll post this tomorrow.

People are always giving me advice some say, enjoy Jonah while you can, I want to punch those people.  Other frantic parents will literally put the fear of God in you.  “Jill your son is dying before your very eye’s, what are you doing about it?!”  To those I say: “Stop trying to sell crazy here, I’m all stocked up.”  I know what I need to do, find balance.