Tuesday, December 21, 2010


Talk about time slippin' away.!
Since we've moved and its just me and Daniel time seems to slip through my fingers like water.
He goes to school and you'd think I would have time to post, but I don't!  I have thoughts to do it, but then when it comes time there is something else that is more pressing to do.  
 So this year I have sucked at keeping up his journal.

Things are going well at school, knock on wood, he hasn't been sick.  Amazing difference from when we were in public school.  He is doing great, I am seeing a lot of little things that others probably wouldn't notice but I am ecstatic to see them!  He is going through another growth spurt.  Eating us out of house and home!  I don't mind!  Everyone says he's grown about two inches too.  When we started school in October he needed a little block under his feet when he was sitting at his plinth.  Now he doesn't.  In fact they said they needed to get him a taller plinth because his legs were too long!

We had our check up with the neurologist yesterday and he says Daniel looks great and we'll see you in 6 months again.  Possibly talking about taking him off his anti-seizure meds then.  Not sure how I feel about that!  We are scheduled for our routine 30 min EEG this week and then another VEP/ERG for his eyes (a requirement for being on his anti-seizure meds).  So cross your fingers and hope all goes well with those two tests!

Wednesday, November 24, 2010

Thankful For...

I am thankful for a messed up at our school district because without that we would not be at the school we are currently at.

I am thankful for a family and husband who is understanding and willing to give up their day to day contact with Daniel to allow him to move to Grand Rapids with me and get this awesome schooling.

Check out this video from a year or so ago about the school we are at....watch the determination. If that is all we get from Daniel is the determination to do more, than that will be wonderful, but so far we are seeing so much more!

Wednesday, November 3, 2010

Can't Do It...

Sorry - I can't do the Wordless Wednesday because I have so many cool things to say about these photos!

Look how great he is standing up without a lot of help from his teacher.  He was so excited for his Halloween party!

Here is a little video of him  at his turn of Pumpkin Bowling!

Tuesday, November 2, 2010

Epilepsy Awareness Month

November is Epilepsy Awareness Month: 

  • Did you know - The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.
  • In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures
  • The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal
  • It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents
  • Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
What is a Seizure?
In normal brain function, millions of tiny electrical charges pass from nerve cells in the brain to the rest of the body. A seizure occurs when the normal pattern is interrupted by sudden and unusually intense bursts of electrical energy which may cause strange sensations, emotions, behaviors or convulsions, muscle spasms, and loss of consciousness. These unusual bursts are called seizures

Monday, November 1, 2010

We're baaaaack!


Things are going great over on this side of the state. We are just still trying to adjust to many changes.  There are so many little things that I didn't even think of before Daniel and I moved. 

Like - uuum its being a single parent 95% of the time.  There are no daily breaks anymore when Daddy gets home because Daddy is 150 miles away.  So that is the #1 big time adjustment.  Daniel still talks with Daddy on the phone a couple times a day, and of course he sees him on weekends.

Needless to say that with the move our routine has changed drastically.  We currently don't have outside therapies anymore.  Well that's because he is getting his OT and PT right in school the WHOLE time.  He is also getting speech but on a different level.  So far we aren't working at school much with the augmentative device.  That is the only thing that is lacking so far, but we are working on it at home.  I do wish that was incorporated into the day at CLC more.  They do work on speech a lot, but just not with the device.  Daniel is learning to vocalize a lot more, and responding quicker.  

Here is a very poor  video (visually) as it is way out of focus, but if you just listen to it, you can hear him telling me the answers and then selecting it on his device.  Sometimes his hand hits the wrong answer but you can hear that he continues on until he gets the right answer.  He even sometimes hits the correct answer a few times, just to make sure I understand that is his FINAL ANSWER!   For those of you who are familiar with AAC devices, there is no delay in the selection at the time of the video, otherwise you wouldn't be hearing his hand hitting the wrong button. 

So is it me or do you guys hear him saying the words too?  No they are by far not "perfectly" pronounced, but he is for sure attempting.  And that is all that I ask for, that he has not given up, that he is still trying.  He is speaking perfectly to my ears!

Monday, October 25, 2010

A Long Past Due Update

We have survived one month of living in two areas!  The first week or so was a little scary as Daniel didn't particularly like that he had to work extra hard.

Now, he is very happy and loves going to school.  Even though its only been 4 weeks, he is making improvements in areas.  I am very happy with the decision we've made.

Some of the little things we've noticed.  He is starting to use BOTH hands to do activities.  He is more interested in doing things for himself.  Here is a little video of Daniel learning how to hold with both of his hands and letting go.  Its small to some but very big for us.

Saturday, October 2, 2010

School Day Saga

Its been a while eh?

Gosh, I don't even know where to start on what has transpired in the last month.  It's a long story which I won't bore you with but I'll give you bullet points and if you're interested in more information, I'll wait for you to ask!

  • One week BEFORE school was to start our home district called and said Daniel couldn't go to the school that he'd been going to for the last 2 years (which we already had an IEP for the 2010-2011 school year)
  • They wanted to send him to a district that has an SXI program which was NOT APPROPRIATE for Daniel.
  • A bit of arguing, and a call to a wonderful advocate (who we've named "bulldog" because she is very tough)
  • Mentioned the advocates name to home district  and voila - oh now we have a choice!
  • Gave the home school district some options and they picked what we have been looking into.
So, after some testing in the district and such it has been determined that Daniel does NOT fit into any SXI program, but he is reclassified as PI only.(Physical Impairment)

We fast forward a few weeks and now you will find that Daniel and I now reside in the Grand Rapids area (150 miles from home) attending Conductive Learning Center for the 2010-2011 school year and living in a furnished apartment - all at our home districts expense.

So what have I learned?  I think that whenever you think you can trust people in the schools to be looking out for your child - you are mistaken.  No matter now nice they are, and the people we dealt with in the schools have been wonderful - its the administration - upper management that sucks and could give two $hits about our kids. Our administrator was looking for an easy way out.  She figured she'd tell us we couldn't go to the school and we'd go to where she said.  Well, I have learned a lot from our advocate. The only reason our home district allowed the CLC/Grand Rapids choice is that is was still cheaper than sending Daniel to the school district that he really should have been going to in the first place.  So, it didn't end up that they were looking out for his best interest, they were looking for the cheaper of the two options.  Unfortunately we aren't' moving anytime soon so I am sure at the end of this school year, we'll be asking the advocate for additional assistance.

If you have an IEP and the school district is NOT following it to a tee - I suggest you bring it to their attention, and if it isn't corrected - call an advocate - a good one.

An IEP is a contract.  I will pay for our advocate to come to every IEP for the rest of Daniel's school years.

So, to end this part of the story, although Daniel is not where we expected him to be going to school, it has ended up that we were able to have the school district pay for a program that we've talked about getting Daniel into for a long time but just couldn't afford the cost and the housing all at the same time, and for a whole school year.

Our family is divided up on different sides of the state, and we are changing how our whole family structure is for a year, it is a small sacrifice we will do to give Daniel the abilities to be more independent in the future. We travel back and forth on the weekends (until the weather starts to suck!)

---Oh and by the way ---I don't have Internet (I haven't figured out how to hook it up yet!)

Monday, September 13, 2010

Our lives begin to end
the day we become silent
about things that matter.

~ Martin Luther King, Jr.

Saw this and liked it.  Thought I would share.

Daniel's life is just beginning ....because I'm not sitting here silently, and I'm very thankful to have found someone who can help him.  Someone who is willing to teach ME too!

Fed- Up!

Daniel should have been in school today, starting his second week of school.  He is not, and that makes me sad AND angry.  It makes me sad because my child isn't being allowed to participate in school with other child his age, he isn't being allowed the education that he is entitled to.  He is being thrown around all because of money and because people don't care.  It makes me so angry because they want to put him into a program that does NOT fit him, because they are worried about money, because they are doing a poor job and just want to push him out of the way.  It makes me angry that people don't look at him as an innocent child that did not ask to be born with a disability, but got dealt a crappy hand from the get go.
He is intelligent, he is not "unteachable" just because he is in a wheelchair.  The wheelchair just means that currently his legs aren't strong enough to support him for long periods of time.  The wheelchair is just that a place for him to sit that will give him support, it does not mean that his brain does not comprehend.  HE UNDERSTANDS WHAT HE IS DOING AND WHAT PEOPLE SAY.   So when you look at him with pity in your eyes and you say "Oh that poor child", he understands-- So stop it please.  YOU are making him feel like he is different.

Because he cannot speak does not mean he can't understand that you are underestimating him because of his disabilities.  He understands, he reacts, and he has a heart.  STOP underestimating him.  He can do and understand and learn everything that your child can, he just can't verbalize his answers, but if you give him another alternative way to answer he will.  In fact he probably knows more than most 5 year olds do.


If you open your eyes and listen with your heart, you will hear the most wonderful things from my child.
IF you would just take a moment to "see" my child as a person instead of a label that you have applied to him.  He has so much to teach you, AND from what I am seeing, you have a lot to learn.
Take the time and learn from him, and you can become a better person.  I promise you that.

After the last week I've had I thought I'd let you read something I was sent from Daniel's SLP who has the biggest heart and totally understands what parents go through.

An Open Letter to Special Needs Professionals


New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best...

You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

 In the last two weeks, my heart has been broken because of words that people say, because of lies I have been told in regards to Daniel and his school.  I don't know everything, and I don't claim to.  I do not look at my child through rose colored glasses.  
I know that there are issues with him physically, but you will have a difficult time telling me my child can't learn, that my child is not cognitively there.  I know there are issues, believe me we live and breathe those issues.  But one thing I know for certain - He is a little 5 year old boy, who wants the same things any 5 year old wants.  He just wants to be loved and accepted.  It brings to me tears that people judge him.  That people don't talk TO him, that they talk ABOUT him like he isn't a person. He has a heart and he feels happy and sad, and hurt just like anyone else.
My eyes have been opened and I have had a rude awakening that people I thought I could trust were trying to give the best for my child weren't.  I am sad today, and will be for a while.  But note this, I might be down today, but I am not giving up and I will fight for what I think is right.  I might not have the knowledge right now, but I will get it, and I will pull in resources and I will do what I need to do for my child.

Thursday, August 19, 2010

America's Got Talent

Ok - how many of you watch America's Got Talent?

I normally don't write anything about the shows. I am sure you might have heard about Connor Doran. He is an older boy who suffers from epilepsy.
The first time I saw his act I watched his interview and thought "Oh I hope he doesn't fail". For some reason, I wanted him to be good. Usually I like to watch for the train wreck acts (I know that isn't nice.)

The whole time during his act I was mesmerized. I got goosebumps, seriously. Maybe because it was just so in sync with the music, because he suffers from something my son has - I don't know, but it was good.

He was sent home earlier in the show, but was brought back this week in the "wildcard week" and he was picked to go on. This time I got the goosebumps again, and tears in my eyes. He said in his interview that flying makes him feel like he can do anything.  He can do what "normal" kids do.

Now we probably won't win, but he has a talent beyond kite flying.....
its called giving other kids with epilepsy -HOPE.  And to me that makes him a winner already.

Wednesday, August 18, 2010


(kid cracks me up ...he always looks back at me for approval or to say...hey did ya see that...how awesome am I?)

Daniel during Augmentative/Speech Therapy.
Ms. Pat rocks for sure.  I highly recommend her to anyone who is looking for a speech pathologist. I have never met a more caring, devoted speech therapist.  She goes way above and beyond for Daniel.  He just loves him some Ms. Pat!

She gets the ......

Monday, August 16, 2010

The $100 Question

If you would have asked me 10 years ago what type of person I'd be today - I wouldn't have even been close!  Not in my wildest dreams would I have thought I'd be a stay at home mom (SAHM) again.  Not to say that what I thought was better than what I am now, because I wouldn't trade it for anything. 

So here is the possible $100 Question for all of you -  What type of person do you think you will be 10 years from right NOW? 

Answer over at Blogher and you could possibly win a $100 Visa Card.  Hurry over and answer!!!
You can answer here too, but I don't have a $100 for you! :)
I'd love to hear what all of you have to say.

I see myself as a more caring person, one who will be strong and stand up and fight for the needs of special needs children - including my own.  I hope to be a very wise ol' bird!

Saturday, August 14, 2010

Guess What We Got???

(sorry for  picture quality - they are from the phone...at least that's what I like to blame it on!)

If you haven't guessed, we got our new walker! Its a KidWalk from Prime Engineering .
Love, love, love it.  Now, he just has to figure out how to maneuver it!

Friday, August 13, 2010

Great Book

Daniel got this book as a birthday gift.

If you haven't seen it, check it out.  It shows cute little stick figure people and just explains, like the title says; It's okay to Be different.  Besides having great illustrations, bright attention getting colors -  the message is awesome.

Daniel gives it 5 stars! (so does mom!)

Thursday, August 12, 2010

Today's Your Birthday!

Today is good for a few reasons, but for now I will list just one:

Caitlin (my daughter) turns 25 today. Had you asked me when she was 15, I use to tell her she wasn't going to make it to 16 because of her mouth! ;)
And look she turns 25 today!

Happy Birthday Caitlin, you're such a big girl!!
(and Grandma told me in a dream to tell you Happy Birthday Caity-did!)

Wednesday, August 11, 2010

Wordless Wednesday - Not Really

He isn't suppose to talk. At least that is what "they" say. He doesn't talk a lot, but the few words he says are music to my ears. I get excited every time, even if its the same word over and over again!

Tuesday, August 10, 2010

Have I Mentioned....I love the iPad

Sorry the quality on this video stinks - it was from the phone and well...enough said.  But you get the idea!

Monday, August 9, 2010

Swan Neck

When I hear something about a swan - I think beauty and elegance.
But when you add the word deformity, that image kinda changes.

So when Swan Neck Deformity was mentioned I immediately looked at Daniel's neck and thought "What are you talking about? His neck looks fine."
Then it was explained to me, and I realized that I could take that knot out of my stomach cause it had nothing to do with his neck!

Swan Neck deformity is characterized by hyperextension (bending “backwards”) at the PIP joint (the middle knuckle) and flexion (bending down towards the palm) at the DIP joint (the end knuckle). In severe cases, the finger cannot be flexed at the PIP joint without passively (using the other hand) bending the finger to get it “started”.

Here is a little more on Swan Neck Deformity of the finger.  So our next thing will be working with a splint on his little finger.  Hopefully this will help strengthen it too so he has a little more pressure when pushing buttons.

Never heard of it before....and I still don't think the name fits, but according to the therapist the finger looks like the neck of the swan...Learn something new each day!

Sunday, August 8, 2010

Bouncin' Birthday Party

What a wonderful day!

We celebrated Daniel's 5th Birthday.  The weather was great. The company was awesome.
Lovin' the bounce house
This year was extra special for me this year.  Daniel completely understood that it was his special day, his birthday.  He understood that he was having people over for a party.  He knew he was going to have a cake, balloons, a party, and people were coming for him.

So thanks to the family that came, and for making it a great day for him.

Adults were even having fun!
Bounce Daniel Bounce
This year we have two big birthday's within one week.  My youngest (Daniel) turns 5 and my oldest (Caitlin) turns 25 within four days of each other. One of my other daughters friend has a bounce house rental company (Bounce and Party) and gave us an awesome deal on one.  Caitlin has ALWAYS wanted a bounce house for her birthday, so to mark the monumental age of a quarter of a century  - she got to play in one! Much fun was had by all, and everyone was extra careful when Daniel went in....no injuries  (well except for a skinned elbow by Brittany!)

 I swear I'm going to send this into Funniest Home Videos, I just about peed my pants! All I could say after I gained my composure was "Only Brittany...so typical".  Anyone that knows Brittany...will not be shocked.

Caleb & Gavin

Victoria, Chase, Caitlin & Daniel
Alexandra, Zachary, Brittany, Caleb, Victoria, Chase

Full View - Putting the "D" in place
Crane Construction Crown
1st time in the house

Tired from bouncing and waiting for cake!
Bounce House

Friday, August 6, 2010

Serial Casting

Yep, we are doing serial casting again. This time on Daniel's left arm.
Arm casting is a lot less heavy then having both legs done!
 So far I've only gotten clobbered once, but hey we've got 3 more weeks to go!!

Oh and have I mentioned its someone birthday this weekend?!?!?

Thursday, August 5, 2010

My Cupboard is Overflowing...

I think I have every sippy cup, drink cup, nosy cup, water bottle type thingy in my cupboard. I have spent more money than I want to admit to.  Every time I see a cup at the store I think "THIS IS THE CUP...This is going to work"

Daniel is going to be 5 years old soon.  VERY SOON.  I cannot get this child to drink from a straw.  I cannot get him to drink out of a cup with any type of consistency.  There is a lot of mouth leakage to say the least.

Can you give me any ideas??  Otherwise we are going to continue to have a very big boy drinking from a bottle with great success, but it won't happen at school.  So I need some ideas quick.  And NO a feeding tube is NOT the answer for us at this time.

Wednesday, August 4, 2010

Pa Pa Potty Time!

I think we've FINALLY got it.
Not that Daniel didn't understand it, I totally blame myself.  My lack of bringing him to the potty.  My lack of time management.  He has been going on the potty when I put him on it for ages.

I mean I've written about it way back here and an even older post here
In all actuality it was ME that needed the training.

So a couple weeks ago when we were home for an extended amount of time, I decided that THIS was the time. 
*I purchased this little doodad of a watch for him to wear.  The Potty Time Watch
* Dug out our potty books.  Have You Seen My Potty is my all time favorite
*Purchased some Silly Bandz.  I think they should make some for potty time but I didn't find any! :)

I set the Potty Watch to go off ever 60 minutes at first.  When I heard the music I knew it was time to stop what I was doing and take Daniel to the potty seat.  He has his own potty chair
We'd read his book or watch a little video, and he would always go potty, even if it was just a little tinkle, I could tell he was trying.  So every time he went on the potty he would get to pick from the silly bandz and we'd put it on his wrist.  Throughout the day I'd count his bracelets and we'd talk about how many I think he could get.  He thought this was fun and got into the mode of going potty and getting a band.  At the end of the night we'd take them all off and start over again in the morning.  And YES he stays dry though the night and pees instantly when I get him on the potty.  Most of the time before I even get him buckled in!!

So now, I am proud to say that Daniel is the proud owner of "big boy" undies with dinosaurs on the butt, and he even has his own little tightie whities!!  When we go out we are still putting on diapers until I figure out how to be "safe" when we're out and about.  Considering he is non verbal he really doesn't tell me he has to go, its just a matter of the every two hour schedule.  We havent' had many accidents but there are a few, as daddy and his wet lap! :)

Now the real test is seeing how he will do at school in a month!  I have a feeling I will be sending multiple sets of "extra" clothes for a while.

But I am proud to say that I am now potty trained, as Daniel was ready a LONG time ago!

Here is a link to information about potty training children with special needs

Tuesday, August 3, 2010

For People Who Just Don't Get It-

Just take the time to read this - most of the people who come to this blog will understand, as we've all gone through some of this stuff at one point in time.
For the ones who haven't had to go through it to the degree that parents with special needs kiddos, who have a lot of medical issues; read on.

This was borrowed from www.jenniferLawler.com

For Jessica

"A couple of weeks ago, a friend of mine and I were talking about a study she’d just read, which concluded that people without children were happier than people with children; or, to put it more precisely, despite what conventional wisdom holds, the study found that having children did not increase anyone’s happiness.

At which all I could do was burst out laughing. Because, well. Duh.

Only an academic would undertake a study like this, defining happiness as something along the lines of “satisfaction with life” and “feeling rewarded by your work.” If there’s an occupation more likely to make you feel incompetent and unrewarded than being a parent, I have never heard of it.

If you weren’t an academic, you might define happiness as the experience of being fully alive. To know grace, and despair, and the kind of hardness you have to learn to stand against; to watch your family fail you when you need them the most, and have your ex-husband look around, shrug his shoulders, and hold out his hand to help you up again.

Right. Your ex-husband, so that you can learn a bit of gratitude, just enough to appreciate him, which you didn’t manage the first time around.

These are things you’d never know if you hadn’t had your daughter. Things you wouldn’t have had to know, and learn the hard way, bitterly.

If the medical resident hadn’t sat down while you held your baby girl in the neonatal intensive care unit and said, “Your daughter’s brain is massively deformed.”

The daughter you loved even before she was born. When she was an abstraction, a positive sign on a pregnancy test, before she kicked you in the ribs, long before she ever drew her first breath. Love you did not know you were capable of feeling, primal and angry and powerful, you would kill ten men and Satan if you had to.

But the universe doesn’t ask that from you.

When your daughter is nine months old, a neurosurgeon will say to you, “We believe resecting the left side of her brain will help control the seizures.”

The seizures that she has all day, every day, dozens, hundreds; she was born with a massively deformed brain, what did you expect?

You think a minute, and you realize the doctor is saying they are going to take out half your daughter’s brain, and throw it away, so much trash, and you’re supposed to sign the consent form for this.

And after the surgery, when the seizures come back, you will sit across the table from the man who is now your ex-husband, the man you adored, but life can kick the ass out of any romance, even yours, and you will order a very large glass of tequila, and you will say, “What the hell are we supposed to do now?”

And you hope the answer is going to be about slaying ten men and Satan, because you’re capable of that. Yes. Heroic action? You are totally down with that. But the answer is, you are going to go home and do the best you can to make a life out of what you’ve been given.

And no one is going to give you any instructions, or any feedback, so no matter how well you’re doing, or how badly you’re screwing up, you won’t know either thing until maybe – maybe – at the end of your life, fifty years from now, you’ll be able to look back with some perspective and go, “Eh, should have done that differently.”

So you do the best you can. You raise your daughter, and she is three years old before she learns to walk, seven years old before she learns to use a toilet, and mothers all around you are blathering their worry that their babies aren’t talking by twelve months, and you don’t even know what universe they live in, because in your universe, you had surgeons take out the left side of your daughter’s brain and throw it away.

You just got back from the hospital the fourth time or maybe the sixth time your daughter’s shunt has had to be revised – that is, yanked out and a new one put in because it stopped working, which means the pressure builds inside her skull, which could kill her – and the man (the man, you weren’t picking any goddamned boys this time, this time you found yourself a man) he says he’s not ready for someone like you. It’s just too intense.

What he means is he can’t deal with your daughter. This is a story you will go through more agonizing times than you can count, with friends, with family, with work, with other men who don’t trust you when you say all you really want is to just get laid. They will all say it differently, but you know why they’ve cut and run. Hell, you would have, too. If someone had told you ahead of time what was going to happen now? Baby, you would have been on the next plane to Bolivia and fighting extradition every step of the way.

Well, screw them.

You say that a lot. Screw them.

So, no, most times you’re not thinking about how happy this is making you.

Sometimes, in fact, you’re thinking about how a long time ago, you were kind of a charming young woman who read a lot and married a nice guy, and you planned to go to Paris.

And you never got there.

And somehow, maybe during the thirteenth hospital stay, or perhaps the fifteenth, your life had narrowed down to a few good things. Your work, and your daughter. Your three old friends, who knew you way back when you were kind of charming, and your three new friends, whom you refer to as the one who calls you “hard,” the one who calls you “contentious,” and the one who calls you “inflexible.”

Because it’s funny, and while they mean it, they don’t mind it, they even seem to admire it. Your friends are warped, too. Hey, it happens.

“You need to get some Mike’s hard lemonade,” your daughter says when you’re at the grocery store, because you once told her that you had one at your friend Diane’s house, and you liked it, and in your daughter’s world, if you do anything you like once, you must do it many many times, because that is wonderful.

People look at you funny when she points to the Mike’s, like you’re an alcoholic raising one, but you think screw them, and you buy the Mike’s and it stays in the fridge for three months before you throw it out, but it makes your daughter happy.

You would do anything to make your daughter happy. To make her whole, and to promise her that she will never have to go to the hospital again, but despite all the effort and practice, you’re just not that good at lying.

When you bring her to the hospital for the eighteenth time, or maybe it’s the twentieth, and she says, “I want roses, like a princess. Red ones,” you make sure she has them, even though it destroys your budget for the month. Raising your daughter makes it impossible to also hold a steady job, so you freelance, despite the fact that you’re not really cut out for writing about things normal people are interested in.

And you find out, interestingly enough, that there are so many not-normal people in the world that you don’t ever have to write for the normal ones if you don’t want to. Which is a huge relief. It’s a club and the password requires an appreciation for dark humor, and you have to have been through gut-wrenching grief to get here, and you look at the people who don’t know, and you realize, for the first time, that you don’t want to be them: innocent, unknowing, unformed, unrealized, their lives entirely unlived.

You bring your daughter home from the hospital, and she says, “Next time I want carnations,” and you know there will be a next time, and it makes your heart hurt.

Still, you are so not ready when the next time comes. It’s a mugger, and you’re not even walking after dark.

You’re at the hospital for another MRI, routine. You know all the rules by now, and the names of the nurses, and the questions they’re going to ask. And you know the MRI is going to take one hour, ninety minutes tops, because it always has.

And you know from long experience that when something deviates from the norm, the news will not be good. In the world you don’t get to live in, people get good news all the time, but not in the universe that made your daughter.

Three hours later, the nurse comes in and makes some remark about it taking a while to get the pictures, and you know she’s lying but you don’t push, because she’s not allowed to say, and she won’t.

So even though no one tells you that you should, you wait by the phone the next day, and the neurologist calls just like you knew he would, and he says, “There’s been an unexpected finding,” and even though you knew it would happen, it catches you in the gut and you sit down, hard, and you think I can’t stand it.

The sky has fallen down many times in your daughter’s short life, the sky with all the stars in it, and you have picked up the pieces more times than you can remember, and you have climbed the ladder and put them back in place, where you think they should go, and you get things in backwards and out of sequence, but you do the best you can, and you climb down off the ladder, and you’re at peace with your work. You wish it could be better, but there’s only one of you, and the sky is so vast, it takes a while to put it back together again, and you did the best you could.

And you just went through all that work, and here is the goddamned sky scattered all over the carpet again.

The neurologist describes the new problem, like having a massively deformed brain is not enough for one child to bear. You process what he is saying: there’s a hole in your daughter’s spinal cord. He calls it a channel, and he gives the medical name for it, so you can look it up on the computer and give yourself a heart attack, and then he says he would like a neurosurgeon to consult, and you say, sure, because what are you going to say? I can’t do this anymore?

So you tell your daughter she has a hole in her spine, and she takes the news gracefully, the way she has taken everything you’ve ever told her about herself, you have a massively deformed brain, you have seizure disorder, there is no cure for your disease, and oh yes, your all-time favorite surgeons took out the left side of your brain when you were nine months old.

There is one secret thing you never tell her. You never tell her how afraid you are that this is the last time. The last birthday. The last kiss good night. The last time you will ever sing the Mockingbird Song to her, the way you have done every night for thirteen years.

You have never done anything for thirteen years before.

The neurosurgeon is a pleasant man, which is a change from the usual run of neurosurgeons, and he describes what sounds to you like a horrifyingly high-risk surgical procedure, and which he calls an intervention that he has performed before. You don’t push him with questions like, How many times? Because you don’t want to know. Because it will break your heart or terrify you, and you don’t have the stamina for that. Not today.

He turns to the computer, calling up the MRI, and you focus on his hands, and you decide that he has competent hands, artist’s hands, and it’s a good thing, too, because you are trusting your daughter to those hands.

He wants you to look at the image on the computer, but the image makes you want to throw up, you don’t want to look at it, but the doctors always make you look.

And you see the place where they took out the left side of her brain and threw it away, and he shows you the hole in her spinal cord that goes on and on and on, tracing it the length of her spine, and you can’t stand it anymore, not even to be polite, so you stare at the floor, and you notice your sandal is scuffed and you wish you wish wish wish he hadn’t made you look, and you hope you can hold it together until he leaves, and you can bolt to the nearest bathroom and be sick.

He smiles kindly and schedules surgery for August 10th, which is too soon, much too soon because you can’t even conceive of what he is going to do, and it is going to take you a long time to wrap your mind around it, and it’s also too far away, much too far away, because you would like to sleep until it’s over, and there’s just no possibility that you can get away with staying in bed that long.

You look up at your daughter, and you see her face is stark white, and you know she is scared out of her mind, she has understood everything that has taken place here and it was so much easier when she was little, and she didn’t, and she would just smile at her hands and coo.

Her father is barking questions at the surgeon, agitated and pacing, and the surgeon answers him patiently, prefacing each response with the phrase, “That’s a good question,” along with a nod and a smile, like your ex-husband is a good student, while you sit there, a lump, bovine, you couldn’t form a question if it would save you from a firing squad.

You are trying to think of what to say to your daughter, and all you can think is I don’t want to lose you, baby girl, I don’t want to lose you I don’t want to lose you lose you lose you.

Which doesn’t seem particularly helpful. So you shake hands with the doctor, and before the nurse starts asking all the questions on the H&P, you tell your daughter that the surgeon is going to try to keep the hole in her spine from getting worse, and that means some surgery, and maybe five days in the hospital. And you must do a good job of not communicating your deep dread and fear, because she says, “Okay. Will people bring me presents?”

Yes, you say. Yes. It will be required. You hug her, and she says, “You have your stars on.”

Those are your earrings, and the very first time you wore them, your daughter exclaimed with delight, “Now we can wish upon a star every day! Twice!”

And so you wish upon the stars, right there in the examining room, that you will live happily ever after, and have good work to do, the wishes you always wish, and then you’re ready to face the nurse, and to answer the questions she has, knowing how gut-wrenching it is to go over your daughter’s medical history with someone who doesn’t know her, knowing that your daughter will pepper you with as many questions as the nurse will.

At home, you try not to think about August 10th. You know it will come too soon, and not soon enough. You make a note to buy more crossword puzzles, because that is all you can do when your daughter is undergoing an intervention the surgeon has performed before, and you didn’t have the courage to ask him how many times.

At dusk, your daughter says, “Time for fireflies!”

And you know the drill, that you can’t watch the fireflies without a snack, so you ask if she would like ice cream or a cookie, and she says, “I would like ice cream and a cookie, and some Diet Coke, and I will want my princess figures, and I will get the door for you,” and you don’t even try to argue about the ice cream and the cookie, or suggest that milk would be better than Diet Coke. What if this is the last time you look at the fireflies together? You don’t want to be the jackass who screws it up.

She gets the door, and you bring the cookies and the ice cream, and go back for the Diet Coke and the princess figures, and she settles onto the patio chair with a sigh of contentment. And you look up at the stars in the sky, and you wish you knew something about astronomy, because then you could tell your daughter which one was the evening star, and you would tell her that that is the star to wish upon. But you don’t know; they all look alike to you. And maybe it’s better that the stars you wish upon are the ones you can see whenever you want to, wherever you are, even if it’s the intensive care unit on the fifth floor of the children’s hospital.

“I see a firefly!” she shouts. “The first one tonight! How many do you think there will be?” Before you can answer, she says, “Where do fireflies live during the day?”

You admit you don’t know, and she says, “We will look it up on the computer tomorrow.”

And you do, and you find out that fireflies are rapacious predators, but nothing shocks you anymore, not even that. You don’t tell your daughter this finding. And the calendar moves one day closer to August 10th, and the number of times you go into the bathroom to throw up increases by a factor of two.

A long time ago you stopped raging at the universe for doing this to your daughter, and years before she was born, you stopped believing in a benevolent god, but right now you would like to hurl some curses at a supremely powerful being, to have the satisfaction of getting an answer back. You would take on Satan and ten men, but no one asks you do to that. No one has ever asked you to do that.

They asked you to do this instead, this infinitely harder thing. And you think about that study, and you laugh out loud again, and your daughter asks why you are laughing, and you say, “Sometimes, girlfriend, I can’t believe how badly people miss the point.”

“What does that mean?”

“It means I don’t care that I’ve never seen Paris.”

She’s accustomed to your moods, so she nods, and she turns on the radio. “It’s your favorite song!” she says. “Isn’t that lucky?”

And you hug her hard, but she’s used to that, too, and she lets you, and even lets you sing along without complaining (“this time only, mom!”), and you are lucky, probably the luckiest woman living, and happier than you have ever been, but not in any way an academic would understand, or even conceive. Your joy is bigger than the universe and contains all the sorrow of a lifetime, and has nothing whatsoever to do with feeling sufficiently rewarded for your work"