I think of him daily, even almost 15 years after he died, in the abstract and haphazard way we remember the loves of our lives. But, a few nights ago, I found myself wondering why I cannot stick to the things I promise myself I will do. I can’t seem to keep to the good habits that health and happiness dictate. I can’t seem to approach my parenting challenges in any consistent manner.  I am trying, but I need to try harder.  My goals are much less lofty than my dad’s were.  I want to eat better.  I want to dress better. I want to fold the clothes when they come out of the dryer.  I want to prepare for work before I need to be at work.  I want to wash my face before falling into my sleep-coma.  I want my children to see my love for them reflected on my face…even when they are driving me crazy. I know that I just need to try harder, but I have not yet found my way.

So, I sit and I wonder what my dad’s advice would be –  if only he could be here to refuse giving it to me!

I really feel like the sun is starting to shine through the clouds.  Max had a terrific morning before school.  Chipper, eager for the day, and no anxiety or crying.  He even woke up saying, “Aren’t the mornings so much better?” There is something to be said (though I’m not sure what) for an 8-year-old who can first recognize that he is suffering from anxiety and then begin to notice it slowly drifting away.

Last night in the bath, Max was covered in bubbles.  He looked down at his legs that were barely visible and said, “Look, I’m wearing casts.”  He then began to laugh.  If you asked me four months ago if I though that he would ever laugh about his casts, I would have punched you in the nose.  He spent the next 15 minutes in a comedic rendering of his entire surgery and recovery.  ”Remember when I couldn’t walk, and remember when I was screaming in pain? It was so terrible.  Oh yeah, yeah, remember the leg immobilizers? Mommy, mommy… and the spasms, they were terrible!”  Then, he performed his rendition of what Broadway might call, “Max, the early years,” complete with fake crying and refusing to go to school.

While he does do mean impersonations, I was laughing to cover my tears of joy as I joined him in distancing himself ( and all of us) from the worst of his pain and fears.

I am truly speechless.

Unfortunately, she seems to have neglected to tell my kids that I am THE best mom in Metuchen. They apparently don’t know WHO I AM. Just last night, Max uttered something to me at around 1:00 A.M. while I was sitting AWAKE with him because HE COULDN’T SLEEP, that sounded something like, “You aren’t heeeeeelllllpppiingg me, what kind of mom are you?”

I wanted to say, “Well dear, haven’t you heard? I am THE best mom in Metuchen.” Instead, I believed I mumbled something like, “Go to sleep for God’s sake, you rotten child!”

Then, just this morning, my lovely Sophie was stomping around looking for something to wear to school and raiding the dirty laundry pile. I gently reminded her that the clothes she just put on might be slightly dirty, and she replied,

“YOU never do laundry!”  Of course, had she known that I am the BEST mom in Metuchen, she never would have uttered such an obnoxious comment.  Clearly, she has not been told WHO I AM either.

Honestly, someone out there must tell them. They deserve the truth, don’t you think?

While I reported that things are improving and Max is finding his way, and mine along with it, school is still not his favorite place. It takes some prodding to get him there and it takes a literal village to get him through.  This morning we arrived at our illegal parking spot a bit earlier than usual ( translation…before school started) and Max’s aide was no where in sight. Our Mrs. J. usually meets us at the car and takes Max into school. She usually carries his backpack and for the better part of this school year, forcibly extracts him from the car crying hysterically and tells him jokes to get him in the door.

Today, she had an early morning appointment that ran a bit late.  The school figured she would be there and didn’t send anyone to meet Max.  We got out of the car and looked around.  No one…

“Max,  I’ll walk you in and you will be fine.” I said, tentatively. I waited for the tears, I waited for the drama and I waited for a meltdown that didn’t come.  He just started walking.  Without him noticing, I put his backpack on his back and sent him to walk into school with a friend.

This has never happened before.  I may have had to wait until  3rd grade to see my boy walk with his own backpack on his back into school,  but I can tell you that it was just about the best way to start a day I can imagine.

I want to tell you about my purely selfish pursuits and frivolous past-time. Blogging. I began writing  about seven years ago as a way to make sense of the unthinkable.  I used this blog, as well and the two that came before it, as a form of therapy and a way to engage in what, had I listened to younger self, I like to do more than anything else.  Write.

I am insanely jealous of the famous bloggers who write regularly, earn income and a loyal following by doing exactly what I know I can do.  My efforts have suffered from the triple threat of pathological procrastination, fear of excessive narcissism, and lack of technical savvy.

I have failed miserably at overcoming my procrastination and I still wonder why on earth anyone other than my three closest friends would care what I have to say.  But, much to my surprise and pleasure, I have a  techie-sponsor who is eager and able to help me launch my own website.  I suspect he is willing to do it out of his love for Max, but I am none too selfless to miss this opportunity.

I am pleased to announce that this blog will very soon be moving to http://wearingcostumes.com/

I hope it will be a combination of mindless drivel, reflective consideration, helpful insights and just maybe something others will enjoy reading.

Keep visiting me here until further notice but wish me luck.  I am really excited.

Why so glum,? You ask. Because I cannot help Max. Max’s pain, anxiety and depression are running so deep that the entire family is now suffering. He has not snapped out of it, still feels terrible pain and trauma from what was supposed to be a minor surgery to help him walk, and I cannot help him. He has no energy, no motivation and no hope. I have lost what used to be an endless supply of patience. I want to scream and yell and throw things. And while generally I don’t, I cannot say that I have been entirely successful.  There was that embarrassing incident in the kitchen yesterday…

I have reached that point where being the mom of a disabled child is too much to bear. I have been there before and I know that at some point I will return to normal but it’s important to write about it because no one understands. No one, except those of you who might read this blog because you too are the mom of a child with a disability, cannot begin to imagine how terrible it can sometimes be. We are not miserable all of the time, we are thankful for our children and love them and still have happy times, but the truth, that no one wants to hear, is that there are dark dark days when the rest of the world can inhabit the parental earth and we cannot.

My child has no joy in his heart. He has no hope for the future, he has pain and frustration and fear.  He doesn’t have a playful spirit or carefree moments of imaginary play, freedom to run or jump or even the energy to climb up the steps.  Dramatic, much? Maybe, but you just don’t understand. A child without childhood is more tragic than a child who cannot walk, talk or read. When all he couldn’t do was walk, he was happy.  But now, when walking might even be in the cards for him sometime soon, he doesn’t even care.  The ugly side of his “pretty” disability is that he is fragile and emotionally unstable.  Apparently, you don’t get to have a damaged brain that keeps itself neat and tidy.

He cries and wails at the unfairness of his life and has spent the better part of 3rd grade in the nurse’s office.  He has had a few good weeks here and there and somehow manages to learn the material and keep up, but he has not had a genuine smile on his face for months.

I am angry that having CP wasn’t enough of a cross for him to bear. Didn’t he struggle enough already?  He was born too early, weighed too little, didn’t breath enough.  He was tight and rigid and couldn’t chew or swallow. He was sick and stopped breathing in his sleep.  His ears hurt and his nose ran and he throat would nearly close up.  He couldn’t eat solid foods and couldn’t drink from a cup. He couldn’t roll over and couldn’t babble.  The only thing he could do was smile.  He could smile bigger than the sun and his light was so bright that I actually had to turn away from him sometimes.  He brought joy to others, attracted people to him and the world became a better place because he was in it.  People wanted to photograph him, document him, hug him, shower him with gifts. Love poured into him from everywhere. He was happy.

And now, he is not. I wish I could take back every therapy session or every attempt at helping him walk.  I wish we never did this stupid surgery and left him alone the way he was.  I bargained away the present for the hope of avoiding a wheelchair in the future.  By making him think he wasn’t ok, we used up all of his light and now there is no more.

He had surgery, he had pain, he was miserable but brave. He wore casts, leg immobilizers, took medication, missed school, caught up, missed more school, cried a lot, became depressed and anxious, tried to walk, took therapy, and tried harder than anyone could have ever imagined.  He recovered from the pain, got a bit happier, tried to play and relax, and continued to try to walk.  He can’t… ( I have added and deleted the word “yet” from that sentence ten times… insert if you want, leave out if you don’t)

Yesterday, we saw the surgeon, he was supposed to take the casts off so that everything would miraculously improve.  He takes one off and says the other was defective this entire time and puts a new one on the left foot.  I should have known it wasn’t right.  I had a feeling but I didn’t know for sure- I should have known, I did know, but I didn’t do anything about it because it seemed impossible that it would be defective.  Now, one more cast, lots of pain and the leg without the cast is weaker than ever…

Dr. Nutso (sic) still says the surgery was a success and that Max can walk…he just doesn’t know it yet. If he just walks and walks and walks with help, he will learn that he can do it without our help and that we should just keep going. Forgive me for being cynical, but WTF?

Since I am not allowed to curse in my blog anymore, I will just leave it at that!

Never heard of PRSSPMSPRHS? Don’t you read the internet? I have post traumatic shock syndrome, PMS, and pre Rosh Hashana syndrome. None of these things alone can kill you, but together, they are messing with my mind.

Max did very well in his surgery with minimal drama, maximum drugs, and maximum “put on a happy mommy face.” He is recovering well, and willing to try to get some movement and therapy. Today he tolerated 30 minutes. My brain is stuck on “what am I supposed to do now?” mode.  I don’t know how much he should be able to do, and I don’t know if I should send him to school next week in a wheelchair or keep him home. It seems unfair on some level to take a perfectly functional kid who walked into school last Tuesday and send him back in a wheelchair unable to walk yet. I also have to admit that I suffer from irrational expectations.

Then of course there is the PMS which really needs no explanation and the PRHS, Pre- Rosh Hashana Syndrome. This is the annual time of year when we Jews dress up, wear hats and begin to feel guilty about ourselves and every other person on earth. I usually make a big dinner with family and friends to reflect upon the year behind and the year ahead with gefilte fish balls and brisket. As I spend an entire day whipping together a meal that people pretend is impressive, I often feel overcome with emotion about how fortunate my blessings. This year, however, I feel as though I have spent far too much time inventorying, experimenting and assessing myself and others.  I have re-arranged, re-organized, re-visited, re-reduced, re-used, re-cylced myself only to find out that the only thing that is now different is the location of the snack drawer and the color of my hair.  I haven’t broken my bad habits, expanded my good ones, changed my outlook or stuck to any hair-brained new system or plan that I believed would help me accomplish my goals – small or large.

I am still having the dinner, but this year I ordered the entire thing from a restaurant. Since I sold all the furniture we usually use for dining in one of those previously mentioned “hair-brained” schemes, dinner will certainly be “casual.”

I am still grateful for all my blessings but right about now, they are exhausting me and I want to take a nap.

I swore, years ago, that we would never cut Max.  He was too perfect, too strong, too functional and didn’t need to be “fixed.”  His brain was damaged, nothing can change it and he will learn to do what he needs to do and can keep progressing.  Fast forward to tonight and I am remembering that promise to myself and to him and feel like a cheater.  After months of exploration, years of reading, 60 Minute-style interviewing of any parent I could find who did it, and a cold hard look at the facts, I flip-flopped.  I did most of my flip-flopping ( in flip-flops) this summer as I absorbed the realities and limitations of his progress.  I went full speed ahead, marched back into Dr. Nuzzo’s office, five years after I stormed out his very same office declaring that he was nuts and that I would never do this surgery.  With a bit of tail between my legs,  I declared that we wanted PERCS. Once he proclaimed that Max was an excellent candidate- one of the best he has ever seen – and that had a future likelihood of walking independently – I signed him up as quickly as if it were a Mommy and Me class.

I have fantasized about best case scenarios, discussed them with strangers, and planned our course of action.  I have called our insurance companies ( yes, more than one) and am on a first name basis with our claim reps to ensure that this very expensive “same day surgery” will be covered completely.  I have emailed and chatted up the doctor’s staff so that they know who we are and will answer our calls in the middle of the night.  I have cleaned out the therapy room, ordered some ridiculously expensive equipment from the one person who makes what I need and am having it shipped from Washington state.  I have organized therapy and arranged for a conductor from Hungary to come here to work with Max.  I have spoken to his teachers and his aide and his principal ten thousand times. I even had a conversation with the transportation office about him not riding the bus for a few days.  I saved my 15% off coupons at Children’s Place to buy pants that will fit over the casts he will wear for a month and tonight I went to Back to School Night with dark circles under my eyes and a glassy expression that hid the tears I felt like shedding.

The procedure is safe and quick, but it is still not fair.  My son fell asleep after crying for a long time about how scared he was and asked a million times how much it will hurt.  He doesn’t deserve that. It may be the right thing to do, it could change his life, but it kind of sucks anyway.

Until 2 weeks ago.  It all began with a drive gone wrong.  When “they” say no good deed goes unpunished, I have to agree.  Everything in life was fine as we walked out the door on the way to the dentist. Our neighbor was in a panic because her dog was sick and she needed a ride to the vet.  We were going right by and were happy to help.  Something about the weather, the dog smell and the traffic got to Max and on the way down Route 27, he got car sick. Sick enough to turn white, start sweating and feel awful, but nothing worse.  Life has not been the same since.  He is terrified of getting sick again, afraid of the car, terrified by the rain, afraid of loud noises, fast driving and worst of all… school!  He has not stopped crying for two weeks and couldn’t even enjoy our trip planned just for him…to the Big Time Rush Concert.

Now, its less sick, and more anxiety of the kind I have never seen.  He has not made it to school yet without crying, and has not made it through the day without a trip to the nurse. He is unsure of himself, afraid of the newness of school and unable to get over it.  He is only not crying when he is sleeping, watching TV or around Sophie.  Any task or requirement is met with fear – genuine fear. Fear in a fearless child is a tragedy. One could say that all kids get jitters.  3rd grade is notoriously hard and its only the first week. He just has it worse than others because everything that is challenging is just a little bit more so for him.  Sure…easy for you to say.  Max’s “mind over matter” has gotten him to where he is now and saved all of our lives.  Never in the world has there been a better example of how attitude and emotion can improve one’s health.  Max is living proof.  He needs his calm heart and mind to keep going.  We all do.

Maybe its the bus, maybe its 3rd grade and new teachers, maybe its just adjustment to a new routine, or maybe its a new layer to a cake that will certainly crumble if piled any higher?  Life is good, he is riding the bus, he will be safe and happy and 13 days away from the surgery that could do wonders to the quality of his life.  I need a miracle right now. I need my miracle boy to bounce back.

We are resilient enough to hope that this is just a blip on an already crowded screen, but I need some reassurance and a crystal ball.