January 31, 2012
POAC Gala 2012, a Call for Contributions
(Gary Weitzen, Executive Director)
It’s a brisk, wintry Saturday evening. Feathers and fedoras abound for the “gangster ball” theme, drinks are flowing, and the driving beat of good tunes makes it impossible not to claim space on the dance floor. No, this is not a scene from Boardwalk Empire. It’s a sneak peak at the POAC (Parents of Autistic Children) Gala, which is celebrated annually at the Eagle Ridge Golf Club, and will take place this February 25th at 6:00 PM.
I will not being wearing a flapper dress. They are not that becoming when you’re short.
In a few weeks several hundred people will soon gather to support POAC, as they endeavor to raise money to support the multitude of programs they continually offer to those within the autistic community. These programs range from providing educational supports to parents, teachers, and school personnel, as well as offering recreational activities to children with autism and their siblings. POAC receives no state or federal funds, and its existence relies entirely upon private donations.
Most of these programs remain free to anyone who works with or loves a child with autism.
I can speak from personal experience about what POAC has meant to me, and to many families in the area. When we relocated back to New Jersey six years ago, our eldest child had only had his autism diagnosis for about a year. While living in the Washington, DC area I had struggled to find activities to do with my son. I also struggled to find free educational opportunities with which to enhance his in-home ABA program, the methodology many people use to instruct autistic children.
(Simone Tellini, Training Coordinator)
As soon as I found out about POAC I realized we immediately had access to a wonderful support group, a variety of free educational workshops, and recreational opportunities in an atmosphere that was always welcoming to my child. POAC gave me and my son an outlet on weekends, and through one of their fundraisers a few years ago at Rein Dancer Therapeutic Riding Center, they were instrumental in showing me my eldest’s love for all things equine as well.
Most importantly, POAC gave us a second family.
The price of a ticket to attend the gala is $150, but there are other ways to contribute as well. Each year at the Gala a silent auction is held, and POAC is in need of donations for this year’s fundraiser. The Gala committee also holds a gift auction and raffle as well, and POAC would greatly appreciate any contributions of business goods or services. Finally, another way to contribute would be to place an ad in the Journal that is distributed to all guests the night of the event.
Any contribution you or your company make would benefit children with autism and their families tremendously.
If you are interested in participating, donations can be brought to the POAC office, or will be picked up for you. Please contact POAC at:
1999 Route 88
Brick, NJ 08724
(732) 785-1099
Thank you so much!
January 29, 2012
Sunday’s Child
It’s been a rough winter Sunday.
Zach, who is in theory recovering from a quick round of stomach flu, has been bouncing off the walls within which he was supposedly resting. Justin has been trailing me around the house, often with sneakers in hand and that hopeful grin on his face that says “Mommy, take me somewhere”. Unfortunately, our choices are limited. There are no 2-D movies out (3-D is greatly despised, trust me). I’ve called a temporary moratorium on bowling after our last visit, in which a plate of French fries nearly did me in. Unfortunately, the Magic Kingdom has not listened to my desperate pleas and constructed an indoor Disney in central Jersey.
And I’ve asked nicely.
We will eventually make it to the local arcade, our only real outing option. I will drop $10 on games he won’t really be all that interested in playing, after which I will purchase him an extravagantly priced pretzel, at least a quarter of which I will sneakily steal from my eldest. We will, in fact, get out of the house.
Our entire adventure will last approximately forty-seven minutes.
We’ll survive the remaining six hours of our weekend, Zach whining that he’s bored and wants to leave the house (me too). Justin will be tailed by one parent at all times, because when his OCD is ramped up, so is his penchant for throwing expensive electronic equipment down the stairs. It’s just another winter Sunday in the McCafferty household, and the four of us will make it through.
We always do.
Since I now consider myself a behaviorist first, and a Democrat second, after successfully reaching the bedtime hour without a full-fledged tantrum from either myself or my husband, I’d like a reward. Generally, it’s a piece of dark chocolate topped off with an inch or two of equally good pinot, but today, I’m hungry for more. Today, Mommy is craving a bit of appreciation.
And somehow, Justin gets it, as he “gets” so many other things that he can’t express in words. This time as he climbs into bed, after which I give him my standard offer of a story (the offer he always rejects with what I like to call “the hand”), he doesn’t just burrow under his pillow and tune out the world. Instead, he reaches up for my own hand, pulls me down at an angle my back will deeply regret later, and kisses me. Five, six, seven times, all with intense eye contact, all with a grin that envelops his entire face. He usually reserves this move for our “most excellent adventure days”, so I am surprised.
But eventually I realize, he’s saying thanks. Thanks for trying, Mom.
Appreciation received. And if possible, in return, felt even deeper for this unique child than ever before.
January 26, 2012
Gratitude Attitude
This week’s Gratitude Attitude goes out to my mom, both for all her help with my kids, and for being brave enough to continue trying to teach me how to cook (we’ll get there!). Thanks for being such an important part of our household!
January 25, 2012
What Next
Muted light throws faint shadows on my son’s face as he watches the technician approach, a lovely, patient woman who has conducted this procedure many times before. She places what I’ve decided to dub the “EEG hat” on top of my child’s head with one movement, swift and sure, and just as quickly secures the straps under his chin that will hold it in place. Justin is startled into submission for a moment, then immediately reaches up to remove the offending accessory. I quickly push his hand down, look him in the eyes, and tell him “No Justin, you have to wear this for a while.” He looks back at me, clearly annoyed, but slides back onto the couch anyway with a look of resignation on his face. He is soon immersed in the antics of Nemo on his small screen, and remains for a time relaxed, and compliant.
He hates this, but he’ll do it for me. This is just one of many reasons why I adore this kid.
We make it through the requisite twenty-one minutes of searching for seizure activity, and almost make it to the big goal of forty. The tech isn’t allowed to tell us anything, but I’ve become gifted at reading their faces over the years. She’s only glanced at her pulsating computer screen briefly during our half-hour together, and there’s been no trace of interest or concern on her face. Unless she’s an award-winning actress on the side I’m pretty certain we won’t be receiving a call in a few days about how to control Justin’s seizures. I’ll have to wait the requisite seventy-two hours to be sure, but I think it’s just one more thing we can scratch off our list as to why his behavior has changed so much since Thanksgiving.
One down, eight bazillion possibilities to go.
Justin will begin to protest in earnest at minute thirty-three, so we relieve him of his “headpiece”, cleaning soapy water from over one hundred tiny electrodes from his face and hair. Having had enough fun for one day he immediately rises to leave, and rejects the toys I’ve brought to bribe him to stay. We still have to get through an appointment with the partner of the neurological pediatrician we started with, and my son’s desire for departure at this juncture is not a good sign.
Fortunately my mom is here to help, and within minutes we are ushered into the doctor’s office, and asked to wait as he reviews Justin’s chart. My son is captivated by a scooter offering a multitude of buttons that generate light and sound, so I relax for twelve consecutive minutes (!), knowing my mom will take Justin back to the car to wait if need be. I dig through my purse for a working pen and the blank papers I shoved in there at the last minute for notes, and within a decent amount of time our doctor du jour enters the room.
Once the requisite medical exam is concluded and we are certain Justin’s reflexes are still excellent, my son grabs his coat, pushes my hand toward his bag, and heads for the door. I tell my mom I’ll see her when we’re done, and Justin beams his big “I’m getting my way” smile, and the two of them exit together. I settle back in my seat, and begin to answer questions about our family history that I can repeat in my sleep. I consider slipping something new in there just to keep things interesting, then recall that we’re paying a lot of money for this man’s time, and I need to be mature.
After eight years of these inquiries, this remains a difficult task for me.
Once we make it through the fact that nobody on either side of Justin’s family tree has anything spectacularly noteworthy, we settle into what I like to call the “closer” portion of the appointment. I know that in the concluding minutes of our chat, this learned physician will divulge all of the myriad random issues that could be contributing to the behaviors we’ve seen so exacerbated in our son over the last few months. Many will require rather painful, invasive tests. All are under a 5% chance that my child even has them, most a 1% at best.
None will have any real treatments to follow them up with whatsoever.
Over the years I’ve lost a great deal of my “star-struck” attitude where even the most celebrated practitioners are concerned, and I’ve learned to ask questions. Today I listen politely, take notes, write down statistics and long Latin names I’ll later be unable to reproduce for my spouse. When there’s a break in the litany I look him in the eye and ask a question I would not have broached the last time we subjected Justin to such a comprehensive exam, which was six years, and what seems like a lifetime, ago.
I ask him if there are really no treatments for these issues, why we should explore these avenues. I indicate that I’m heavily leaning against subjecting him to more intrusive procedures for which he’s at little risk, and even smaller potential gain. He seems only a bit surprised by my boldness, but then responds in a matter-of-fact manner that I can respect. “Some parents need to know the ‘why’ as much or more than the ‘what next’”.
And it strikes me that I’m no longer in the “hell-bent on why camp” anymore.
I should make it clear that I don’t believe this transition is part of a continuum. Should someone walk up to me someday, able to reveal the particular genes and/or environmental factors that created the autism in my boy, I certainly won’t turn away from that knowledge. I’d enjoy going to my grave knowing those particular genes’ names. It’s a goal.
But knowing the origins of the disorder in my two boys no longer consumes me. What I really want is a plan. Are there new medications out there now? A new diet whose creation will torture me at meal-times, but which I would happily implement for Justin? In other words, “what you got, Doc?”
We conclude our discussion soon thereafter and I gather my three bags and as many dozen toys to my chest, and begin my schlep to the car. I’ve tucked the paper with my chicken scratch scrawl deep into my purse, knowing I’ll discuss the possibilities with my husband that night, also knowing it’s unlikely that we’ll pursue any of them. I pay the equivalent of half a mortgage payment for my son’s EEG, feel gratitude that we can do so, and walk laboriously through the lobby with my stash. I reach the double doors, and use my elbow to push the glowing green button for egress. Other than the thought of impending lunch, there’s only one issue on my mind.
What next.
January 22, 2012
And the Answer is…
“Mom, why does Justin say “eeee”? Zach asks me as he colors a wooden snowflake bright red, a hue he says he chose because it’s “cheerful”. “I don’t know honey, that’s just the way your brother talks because of his autism”, I respond. I help him uncap a green marker to make the snowflake more “Christmasy”, and I think about how much I’d truly like to know the answer to that particular query. It’s been seven years, thousands of hours of speech therapy, and an equal amount of money spent on trying to elicit some consonants out of my eldest son. I’ve been a (mostly) good girl all of these years, and truly, I’m ready for someone to end the mystery for me. I look down at Zach and realize he’s ceased his artistic attempts and is looking right at me, as if I’d merely forgotten the real answer, and my response to him is imminent.
He’s turning five. The questions are starting to come.
It’s funny. So far, we’ve had elaborate discussions on what constitutes a soul, what transpires in heaven (Mommy, Daddy, and Justin are there, friendly dinosaurs are residents, and there are a lot of snacks). He’s asked me why the sky is blue (the answer for which I had to look up on the internet and now no longer recall), but he hasn’t peppered me with many questions about autism. Zach does know that it’s hard for some people with autism to talk and to make friends. He also understands that autism is the reason his big brother plays the same scene in a movie a trillion times on his DVD player, and that Zach needs to see films on our “big screen” if he wants to know the ending of anything. So far, except for loudly declaring that a few kids at POAC events have autism, it hasn’t been a huge topic of discussion.
I’m pretty sure however, that it will be soon.
Zach’s starting to really notice Justin’s behavior, how he’ll frequently seek affection from his parents (which immediately prompts Zach to do the same, no imitation issues here), but remains mostly solitary in his activities, despite our numerous attempts. He’s asked if Justin could play Monopoly with us, and seemed mildly disappointed when his brother made it clear that plastic cars and thimbles hold no interest for him. Our bowling activities have placated him a bit, afforded Zach the opportunity to cheer his brother on and hug him when he’s victorious, allowed him to feel connected to his sibling. On the rare occasion when Jeff and I have been able to get them to run around the house, Zach has thrilled to the chase, and solicited Justin’s help in conspiring against his parents. Recently there have been more opportunities for connection, for fairly “typical” sibling interaction in our house. Zach has loved them all.
But I’ve noticed that now his questions are becoming far more difficult to answer, and his requests are of a nature I can’t reasonably fulfill. Last week, it was why Justin doesn’t have playdates with his friends from school, and why he wouldn’t sing a song with him. Yesterday ended with a half-hour long discussion as to why Justin can’t sleep in his little brother’s room, with my explanation about completely different schedules (and Mommy losing her mind if they woke each other up) clearly constituting an inadequate response. He’s beginning to want more from their relationship, and he’s starting to wonder why he’s not getting it.
I personally am envisioning a great deal more chocolate in my immediate future.
So far it’s been fairly calm seas between the two of them, with the occasional appearance of mild skirmishes over toys the only time sibling rivalry has marred the surface of their relationship. Every day, Zach still asks how long it will be before Justin gets home from school. He continues his unsolicited acts of generosity toward his elder brother, leaving him books and toys at his place at the table (ones he no longer has interest in of course). According to Zach, Justin is still his best friend.
And I just hope, as we transition into the next phase of Zach’s childhood where questions and requests will dominate our days, that this brotherly love will remain.
January 18, 2012
Time Out
I hear his belly-deep chuckle as I’m clearing dishes from the table, a sound I haven’t been graced with in weeks. I dump dirty dishes on the counter-top and walk quickly to the living room, where I see my eldest boy, cocooned in blankets on the couch. He is laughing out loud at the same segment of a video on his DVD player that he hasn’t seen in ages, one that was once a favorite. He looks up at me to share his joy, another act I haven’t seen since before his illness almost a month prior. His eyes leave mine, return riveted by the children playing Simon Says on the small rectangular screen.
I come closer to the couch and he smiles at me again, a clear and concise invitation. I sidle into his now considerable bulk, and wrap the blanket around me so we are tangled up together. Justin rests his head on my shoulder and squeezes my knee, the tactile tricks he uses to communicate his excitement that I’m sharing the experience with him. I place my arms around him and hug him with all my might, then graze his slightly flushed cheek with multiple kisses.
Briefly, thoughts of our recent trials together fall away. Episodes of his increased, and at times desperate need for order, disappear. Memories of the fierce pinching that conjure up his toddlerhood fall away. The bouts of sobbing with no apparent antecedent, the most difficult symptom for me to bear, are momentarily forgotten. He’s truly present. He’s happy. We’re together, having a simple mother-son moment.
And I relax, a reflex I’m still trying so hard to relearn, and simply revel in him.
January 17, 2012
Respite Repealed
“We’ll make it” I tell myself, even though Justin is thoroughly kvetching and we haven’t even concluded one entire game of bowling. My eldest son has become slightly more agitated as the afternoon has worn on, but thankfully remains mostly compliant. He dutifully takes his ball to the special ramp designed to help him aim, and afterwards embraces me with one of his trademark bear hugs as he waits for the machine to reset his pins.
We’re about to commence the tenth and final frame as he fingers release his round captive, and without warning, the board that whisks the pins away slams down, preventing his ball from concluding its course. Given his post-illness decline in behavior over the past few weeks I expect anger, or at least frustration, but he seems relieved. He knows he can expect a trip to the snack machine now, and as we make our way back to our assigned swivel seats and my wallet, I admit I am relieved too. We seem to be in the home stretch, another outing successfully conducted despite his recent regression.
Then, he sees the french fries.
We’re back in the car, my heart pounding, Justin sobbing relentlessly, my coat askew. I manage to snap the last buckle on his vest restraints as he tries to pinch me again. I thwart his efforts, and as usual, the anger in his eyes recedes. He grabs a hunk of hair on both sides of my head, and drags me down for his signature “sorry” kiss.
Then, I’m sobbing too.
I wipe the tears from his cheek, hand him a juice box, and my boy’s tears subside. After firmly closing his door I open mine, and heave his bag and my purse onto the front passenger seat, because I literally don’t have the energy to walk around to the other side of the car. I allow myself to recall what just happened, to play it out in my mind so I can relinquish this episode to the past.
It’s the smell of fried potatoes that calls his attention, because I’ve maneuvered my body so it blocks his view of her plate, but to no avail. The woman at the table next to us has ordered this carb concoction, and its odor wafts over to us. Justin sees it, and Justin wants it. Not his own plate. Her plate. And he wants it now.
Despite his protestations, I manage to usher his four foot three frame, the length of which now measures up to my collar bones, back to our table. He is fighting me the entire way, wants out of his seat three, four, five, half a dozen times. I switch his shoes, throw on his coat and mine, and somehow grab all of our bags with one hand while holding onto his jacket with the other. We make several aborted attempts to exit the alley. The look in his eye is clear, focused, and devoid of what I know as the essence of my son. He wants that woman’s food..
He is relentless.
Somehow with me practically dragging him we make it out, past the stares of the manager, the families enjoying their time together, the elderly bowlers whom I know are regulars. A few have looks of disgust on their faces. After eight years I’m usually immune to the glares, particularly as they fortunately do not occur often. But today, I want all of the patrons to disappear. I want to disappear.
It crosses my mind that someone might even question my own behavior with my son.
I slide into the driver’s seat, wishing I retained the same measure of control over my child as I soon will with my car. I grab a wad of napkins left over from some local fast-food restaurant and wipe my own face, take a deep breath, and let the “replay” leave my conscious thoughts. There’s still a good six hours left in the day. There may be more skirmishes ahead.
I need to conserve my strength.
I allow myself one more brief moment of reflection as I feel Justin’s foot in the small of my back, his way of indicating to me he wants me to turn on the radio. After four weeks of this on-and-off behavior, I’m not even angry anymore, I’m just sad. I think of all the work we’ve done over the years. The behavior plans with his teachers and specialists. The home program, the outside speech therapy which we are fortunate to be able to provide him. The relentless adherence to ABA protocol that has helped him so much. The medications we’ve agonized over giving him, the same ones that have provided him, and our family, such a long respite from suffering. I think about how along with the moments of joy and the immense progress he’s made, I have to honor his true path and record these moments too, because these periods rear their ugly heads cyclically. They are one truth of my son’s type of autism too.
And they need to be heard.
I turn the ignition key, remind myself that we have a plan. There will be tests conducted over the next month. There will be at least several more visits with two separate specialists. Our family, Justin’s school, and his therapists are taking action. All we can do is continue to love him, and stick to our guns with disciplining his behaviors. Beyond that, all we can do is wait.
And I hate it.
January 13, 2012
Gratitude Attitude
This week’s Gratitude Attitude goes out to Aunt Deb, for some wonderful reminiscing and for just being fabulous all-around; and to my “little” brother Erik, for being the best Jedi Zach’s met so far, and for knowing me so well. Thanks to all!
January 11, 2012
Family Ties
At first Justin brushes by my little brother, barely gives him a glance as he makes his way across the kitchen to the family room, intent on a destination known only to him. I’d hoped for more recognition on Justin’s part, although my sole sibling only makes it up for a visit about once or twice a year. Since I’ve been too afraid to try a plane ride with my eldest, they really don’t know each other very well. Still, they had forged a true connection this past summer, Justin standing at his uncle’s side, occasionally looking at him to share the joy of a particularly engaging scene on his DVD player. I’d thought he’d at least be happy to see him, would show some sign of pleasure at his presence in our home.
And just then, my oldest child stops, pivots, runs back to my brother, puts his hands on either side of his face, and looks at him with the most intense gaze I’ve ever seen.
I take a few steps toward them, careful not to disturb their time together. Justin smiles up at his newly discovered relative, then looks at me. Again, he looks at my brother, then regards my face. He jumps up and down with joy, emits his standard “eee” for excitement, then disengages from my brother’s embrace. The moment is over. But I know in my mother’s soul that I’ve just witnessed a connection made, a cognitive leap in my boy. He may not comprehend exactly who this tall man is to him. He has however recognized the similarities in our faces, the features we share that make our blood tie unmistakable. On some level, I am certain Justin gets that we “go together”.
And he also gets that this is one more person in his life who loves him.
I can’t prove any of this of course. If I directed him to his iPad he wouldn’t type out “this is mommy’s brother”, or show his comprehension in any other form. I know he understands this man is family just the same. And while I’m thrilled that he’s made this connection, it just makes me wonder how much else he knows that he’s unable to share. This awareness of the gap between what he understands and my ability to discern that understanding remains a sore spot for me, although I continue to hope that chasm will continue to close. He’s made such progress with his new technological device in school, and it’s finally begun to spill over a bit into our home. I’m hoping that his need to connect through the written word will increase over time. All we can do is give him opportunities, and wait.
I put those thoughts aside however, because at the moment we’re engaged in a rare opportunity in and of itself- my mother, my brother, my husband and my children all in the same space, willing and able to interact with one another. It’s about as rare an occasion as a solar eclipse, or my going an entire day without consuming chocolate. I need to get back into this moment, to recognize its incalculable worth, and just enjoy.
And as I watch my oldest son return to his uncle for a second round of hugs, I do just that.
January 9, 2012
Reprieve
SLAM!!! I turn in time to see my eldest boy conclude what I know was the long arc of his hand originating behind his head, and ending with contact on what I fervently hope is not a now-broken DVD player. I rush to the living room to tell him not to slam things, which usually is enough to break him from his reverie and redirect him. This time however he just looks at me, with a remoteness in his eyes and an expression I can only describe as “devoid of Justin”. He attempts to do it again. I grab his arm and pull him to me for a hug, and I literally feel the tenseness in his body dissipate, and the essence of my boy return. He graces me with one of his heart-stopping smiles and returns to the DVD player, the episode seemingly forgotten. I return to my dishes in the kitchen, but I know it won’t be long before I hear that ill-begotten slap, and will abandon my scrubbing once again.
I just want this to stop.
Justin’s autism symptoms (or perhaps more accurately, his OCD symptoms), seem to ramp up considerably after either an antibiotic, or an illness, or both. He battled a fairly mild ear infection just a month ago, one which eventually required his usual dose of amoxicillin, and left him healed. It also left him with what I refer to as “extras”, including an increased need for order in his life, frequent head-shaking, and a new manifestation, the slam-dunk of a hand on any object in close proximity to my boy. These behaviors usually come and go in cycles, fortunately with many long and peaceful interludes in-between. This time unfortunately his returning health has also brought back the long-forgotten urge to pinch, as well as awkward body movements, and I know it’s time once again to explore why this is occurring.
And trust me, we’ve been here many times before.
Jeff and I decided to take him to the ATN at Philadelphia CHOP (Autism Treatment Network though Autism Speaks), in part because he hadn’t had a full evaluation done in a few years, and in part because I felt they’d be the best practitioners to help us decide which specialist to approach next. For anyone considering using any of the ATNs in their area I’ll share that I thought it was a very comprehensive evaluation, with the best part by far being our experience with the developmental pediatrician.
Any time a clinician associated with autism examines my son, offers me excellent advice, and exudes any amount of warmth whatsoever, I am hooked.
After my husband took my exhausted son out to the car so I could conduct the rest of our family history in peace (after seven years dealing with autism, it’s become rather lengthy), I felt like I could really concentrate on what she was saying. She told me straight out after observing him that his new movements could be indicative of a seizure disorder, and although the chances were rare, we’d need to investigate further. We discussed the fact that he might just be reacting to the Risperdal, the medication we put him on a year-and-a-half ago to help eradicate the last of his aggressive behaviors. Dr. B also said that all of these aberrant incidences, the return of the pinching, the head-swinging, and the unpredictable slams, could simply be a new manifestation of his autism.
We’ve been there before too.
Our knowledgeable developmental pediatrician informed me that a pediatric neurologist would be our next stop, and visits would probably include at the very least an MRI and an EEG, none of which have been conducted on my boy before. She must have seen me grimace because she offered me a heartfelt “I know, both are going to be extremely difficult for him”, an offering of empathy that made me want to hug her.
I restrained myself.
I also took away from our conversation that I needed a very specific type of neuro ped, one well-versed in seizure disorders, movement disorders, and tics. Dr. B gave me a list of names (all of whom would decline taking Justin on, but at least I left the office with a plan). Through my husband’s supernatural research skills (literally, the man can find ANYTHING) we’ve since come up with a practitioner who seems to fit the bill, one who even had a cancellation for ten days after our initial call.
I’m sure many of you will agree that’s better than hitting the lottery.
Within a week’s time we’ll be gracing the doors of this new practice, and unless it’s an absolutely horrible experience, I’m sure we’ll return for any number of fun tests and consults too. They will be difficult to watch. They will be much tougher, for a myriad of reasons, for Justin to endure. But endure he will, because he is such a good boy, and we’ll get through all of it and hopefully come away with some answers.
I recall, as I closed up my purse and gathered a half-dozen toys scattered around the tiny CHOP exam room to make my return to our car, that the feeling accompanying my relief for having a plan was rage. Rage that perhaps something invisible to the naked eye incites these symptoms in my son. Rage that at times he’ll stop in the middle of an episode, his face will crumple, and he’ll sob his heart out for no reason. Rage that he and our family have come so far, and still have to endure these periodic regressions.
Rage that my boy still suffers.
And yet, infused with the rage remains that thin filament of hope, the thread that has been with me since the beginning, and stubbornly refuses to be broken. The research has come so far in the past few years, physicians are so much better informed, that perhaps for Justin, we will discover some relief.
And along with a lot of baggage, I unwind that thread with me as I head back to my car, and him.
