Tuesday, November 26, 2013
The Life we Claim we Didn't Sign Up For: Saturday in the Park, Wings of Steel Sled Hockey: This past Saturday we signed up to travel by bus from the Skate Zone in Voorhees to Central Park in New York with the Wings of Steel Sl...
Sled Hockey is an adaptive team sport for disabled athletes, or athletes with different abilities. It’s all in your perspective.
Our Virtua Wings of Steel have had a several winning seasons. One year we had players on the Gold Medal winning USA team at the 2010 Winter Paralympics. Holding an authentic Olympic Gold Medal is a truly awesome feeling.
But like all organized sports, as the years go by and the face of the team changes, so does the outcomes of the games. This season we don’t seem to be winning as many games but the spirit and drive to play is always there. This sport provides an opportunity for athletes of different abilities to actually play and participate in an organized sport rather than to sit on the sideline and watch as others play.
Here’s a picture of my grandson Mike passing to one of his team mates, Robert Vettese, aka, the “beast”.
The young lady standing behind the small player from the Rangers’ team is called a ‘pusher’. It’s the pusher’s job to make sure the player gets around the ice and is able to play and hopefully get to pass and shoot the puck. Just like able-body hockey, there are checks and crashes into each other on the ice and the boards. The pusher is usually manning the sled of a player with different mobility issues or who might be more fragile than others and can not tolerate a check of another player in a sled. It can be a contact sport at times. It's hockey, there will be checks.
Both teams suit up outside while the Zamboni cleans the ice at the Trump Lasker Ice rink.
Loading up the Bus!
Wings 2, Rangers 0.
Friday, November 1, 2013
I rarely write anything about me, just me. I often write about others in my life, and events that define what my life is like.
Tonight is Halloween night, my favorite ‘holiday’. October 31 is also the last day in National Breast Cancer Awareness Month. I’m not sure why this particular month has been designated, maybe for fundraising and the Susan G. Komen 3 Day walk, but my most memorable moments in October are the trees turning to autumn colors, my husband’s birthday, and Halloween, not Breast Cancer. Soon after that there is ensuing rush of things to do and places to go, leading up to and including Thanksgiving and Christmas, not my favorite holiday. The daylight hours may be short, but the ‘to do’ list of the last two months of the year are full and hectic. It is also the time of year I have to get the dreaded mammogram and follow-up with an oncologist and surgeon.
This year I will be entering year ten of finishing breast cancer treatment. My breast cancer journey has been relatively easy when compared to what others endure or don’t survive. Some cancer patients call themselves survivors. I don’t. I see myself as someone who has thrived regardless of the bump in the road that was Breast Cancer.
It was a big friggin’ bump, but a bump, not an earth shattering devastating event that derailed life as I knew it. Wait, yes, it did derail it to a degree, but I got back on track. I did what had to be done and moved on with my very busy and noisy life.
After several lumpectomies over the course of 2 years, the diagnosis came from my surgeon that ‘we’ found some breast cancer. I like that he uses the first person plural when discussing my condition, it’s a bond in a weird way, that he’s in this with me. From the time of that phone call through the next surgery and other events that were mostly complications from treatment, my surgeon always discusses things with me as if we’re partners planning on the next move. It’s comfort and support that makes the hard decisions not so hard and gives me confidence that I’m doing o.k. It’s been a good twelve years that is almost like a marriage.
I’ve had a few different oncologists over the years, the last one doesn’t piss me off like some of the others. She seems to appreciate and genuinely sympathize with my concerns. Most importantly, she honors and respects the treatment decisions I make for myself. That’s not to say the previous ones were not good physicians, they were better than ‘good’, some of the best in their field of expertise. I am blessed to have been treated by very capable and top-notch doctors and while medicine is certainly not a popularity contest, I want to like the person that is going to grope what’s left of my boobs, while I sit on an exam table, stripped to the waist with a tiny paper jacket hanging open in the front.
When the reality set in that my doctor visits were going to become a much more regular gig than an annual check-up, I insisted on a sheet to drape around me instead of the ill-fitting paper jacket that was designed to fit nobody I know. When I asked for the sheet instead of that stupid paper jacket, the nurse looked at me, smiled and simply got me a sheet. I have never had to suffer the indignity of that stupid paper jacket again. If a sheet is not already provided at each of my appointments, I ask for one.
With the start of radiation, I felt relatively good. I thought this was going to be a breeze. By the middle of the fourth week, I wasn’t feeling like it was such a breeze. Monday through Friday, every morning at 7:15 I checked in at the reception desk, was handed my beeper to notify me that it was my turn in the “oven” (patient humor, but the techs did not find this reference humorous). I would go to a changing booth, strip to my waist and wrap myself in a sheet, march into the radiation room, with a large heavy door, similar to that of a bank vault, appropriately labeled with tri-foil radiation logo, lie down on a table with a form created from a body mold of my shoulder to keep me in the same position. Once under the accelerator, a light would switch on, the tech lined up the blue-black dots tattooed from the center of my chest to the middle of my side under my armpit, it looked like a grid pattern. It was called ‘the field’. The actual shot of radiation inflicts no pain or discomfort and lasts for minutes. The set-up takes more time than the actual therapy. On most mornings I was back home within the hour.
Weekly blood work indicated my T-cells were dropping, it was the tail end of winter and everyone around me seemed be fighting a cold. The fatigue set in like a wall fell on me. My skin was burned and blistered. I wore snug men’s undershirts to reduce the friction of anything I wore against the raw skin. Toward the end of the seven week treatment it was time for the ‘boost’, a more concentrated blast of radiation. My skin was badly burned and I was asked if I wanted to take a few days off and pick up again the following week. I declined, it was the final week and I just wanted to be ‘done’.
After I finished radiation therapy, my skin healed really well, but a few months later developed a blood infection in the treated breast that almost become sepsis. Once the infection healed the scar from the surgery had now become a crater because of the damage from the infection.
A year later, the oncologist asked me if my uneven breasts bothered me. I laughed at first. She stood back, folded her arms across her own chest and simply nodded right and left at my chest. “Really, does the uneveness bother you?” she said. My response was, “of course it does, but what can I do about it?” She recommended a plastic surgeon. When I mentioned that I thought I wouldn’t be a candidate for reconstruction, because of my womanly size, she responded, “ this is not a size 8 world.” I like that thinking.
My visit to the plastic surgeon was a pleasure. I felt like a million bucks with every appointment. He also doesn’t believe this is a size 8 world. While he detailed for me what the results of the surgery would be, the treated breast had substantial damage and he was limited as to how much he could improve the look of it, filling the crater was about the most I could hope for as an end result. When all was said and done, on my last appointment with him I expressed that I was pleased with the view as I looked down. He said that was 90% of his job.
Along this journey the best medicine was something not procured by prescription or a surgical procedure. Nestling under a blanket with my husband while I whined about how badly I felt, and his quiet but constant presence often was more healing than anything else. Sometimes we’d lay side by side and just hold hands in silence. And those were truly energizing moments, lending strength to each other to get on with our life.
Next week, I’ll have the ‘girls’ checked out, squished, groped and visually assessed by the medical professionals I call the booby team. From the Radiology tech to the surgeon to the oncologist, it will be a long day but I’m grateful I can get all the appointments in one day, and get it over with. Since this will be year 10, I think I’ll come up with a celebration. I’m not sure just how, but I think a celebration is in order. Maybe a big Sunday dinner with the family. We’re overdue for a Sunday dinner.
Wednesday, September 18, 2013
“What am I, Chopped liver?”
It was a question from my grandnephew, Sean Thomas. Late Saturday night, I was sitting with a group of adults around our kitchen table unwinding after a long day of entertaining.
Sean Thomas waved a book in the air as he repeated the question as we all stared at him and his outburst. Apparently, he had just read Tall Tales and Short Stories from South Jersey (http://bit.ly/TT-SS-SJ), an anthology that featured a piece I wrote. It was about moving from Philadelphia to New Jersey and the ensuing events that kept our family in the Garden State, although for some of us, reluctantly.
Sean’s arrival to New Jersey was one of the ensuing events that had kept us planted where we are. He is the son of my niece Bridget, who found herself a single mom winging it alone with an infant Sean, while she worked a full time job and continued her college education. Our living situation at the time allowed us the opportunity to invite Bridget and Sean to come live with us, expanding her support network while she finished up school and continued to work.
The story in the anthology mentioned Sean, he was barely two years old, although the gist of the story was mostly about the cultural adjustments and comparison of city living to the life in Jersey.
But the thirteen year old Sean could not see that. He noticed that not only was he briefly mentioned in the third person, but he felt it was not expanded about just who Sean is as part of our family. He felt a little slighted and that maybe he didn't get he share of a spotlight. This piece is all about Sean and his place in our life.
Sean Thomas is one of my ‘grands’. Technically not a grandchild, but he calls me by the name all the male grandchildren call me, “Ahnee”. That name is a contrived version of Grammy. When Sean and my grandson Mikey began to speak, Mikey had speech difficulties and vocalized Grammy to Ahnee, Sean acclimated to it, the name stuck, but oddly enough, only the boy grands call me that, the girls all say Grammy. It’s o.k. I appreciate the individuality and the differences between the boys and girls. It’s actually pretty entertaining and especially endearing.
Although he was an only child for the first seven years of his life, Sean had a most normal toddlerhood and early childhood as if he had siblings. Like his mother, he has an especially close relationship with his New Jersey cousins as if they are sister and brother and brother and brother. Just like siblings, they spar and argue, but always have each other’s back.
Sean gives exceptional hugs. When he was much smaller, he would run up to me, jump into my arms, wrap his arms around my neck and say “squeeze me, Ahnee!”
Now he is tall in his adolescent growth spurt and wraps his arm around me and squeezes tight and hard, tilts his cheek to mine, all with the same emotion we shared when he was little. We love those hugs. I love that he still hugs me so tightly and am very careful to not expect such a display of affection when outside of the family circle. He is, after all, a growing young man.
Sean is very intelligent and excels academically. He enjoys school and thrives on the challenge of school subjects that demand more work outside the classroom. He plays a variety of sports and since he is one of my ‘grands’ and there are more than a few, he gets the same attendance criteria from me I do for each of the grands and events they participate in. I attend at least one. During his last basketball season I almost failed to see Sean play and was saved when he mentioned to his Mom that I had not yet been to any of his games. That message was relayed and I managed to attend his last game. It didn’t matter what the outcome of the game was, I showed up. Showing up is important to kids, and Sean is no exception. He knows who he can depend on to ‘be there’.
Although his mom has established their own family life in their own separate household, Sean often tells how much he misses living with us. He misses my chicken soup, my meatballs and macaroni, he simply misses my cooking but is quick to praise his Mom’s ‘different’ cooking. He frequently asks, “When are you gonna make Chicken Soup?” When I do make chicken soup, I let him know 'the soup is on'.
Chopped Liver? No. Sean is Crème Brule, crunchy and toasted on the outside with sweet creamy custard resting easy under that hard crust.
He is one of my favorite desserts.
Sunday, August 4, 2013
I gave an old book to a perfect stranger yesterday, though not a total stranger. He’s a young man who busses tables at a bayside restaurant in Somers Point. A few weeks ago while having lunch with friends, he overheard us discussing our television schedules and heard the words ‘Stephen King’. We were discussing the merits of watching Under the Dome on television, having not read King’s book by the same name.
As it happens this young man had just finished reading one of the many novels that Stephen King published in the late 70’s and again in the 80’s and further more so, sometimes revised or updated as the commercial market dictates. Even though the young man politely inserted himself into our conversation, I was genuinely impressed how effusive he was about Stephen King and just how much he had read and knew about King’s early works.
As he went on about this particular novel, I knew he had read one of the later editions of this piece and, being a fan of Stephen King’s early works, rather than his later, I offered that he probably did not read the edition of the book that I believed began with a better opening chapter and that the initial opening was far more scary than the re-write he probably read and that earlier printing was probably published before he was born. When asked where he picked up this particular book, he explained it was a paperback he borrowed from the library.
I ask you, how much more charming can this get? A seventeen year old kid, with a summer job at the shore, who reads library loaned paperbacks during summer vacation?
As we continued our lunch, I was teased incessantly about being the cougar with a jailbait stalker fan. This young man is the same age as my granddaughter. I have to say, I found him charming and real without some of the obnoxious lack of common social skills I see in some teens his age. But I don’t want to seem like I have a cougar crush here, so I’ll move on to the point of this little story.
My husband, leader of the teasing campaign, says, “don’t you have the original version of that book at home?” I hesitated, because I doubt he pays that close attention to my book collection(s), he’s a big crime and lawyer fiction fan who could be president of the James Patterson fan club and he reads on a Nook. But I respond with the affirmative mentioning, “yes, it’s the copy I found at a flea market, it has the original book club dust jacket. It was the best cover of all the printings and the original opening.” Hubby then graciously says, “Let’s bring it back for him next time we come in.”
Here’s where I get weirded out. While I do collect a relatively odd variety of books - meaning nothing to anyone else, but me, myself and I, often the three most sensible people in my universe- it was a complete surprise to me that my husband would notice something that has been sitting around for more than the last fifteen years.
Over the next couple jaunts to the shore, we forgot the book. At one point in the middle of our work week, my husband reminds me to find the book, so he can put it in the car and we wouldn’t forget it. I do as requested, start to thumb through this book again, like saying goodbye to an old friend. I double check that it is, in fact, the book club edition I remembered reading back in the late 1970’s, and with a sigh and shut it preparing to send it off to appreciative hands.
We noticed this young man again while we were at lunch and asked if he would like the book we brought. He was elated, practically blown away. This is no exaggeration. My older grandkids are not the readers I would like them to be and it was a pleasure to make a teenager so happy at the gift of the book, and an old one at that.
I do not mention the title of the book because later in the day someone asked me if I knew if the book was worth any money. I never considered that a book of contemporary popular horror fiction would be worth anything more than the jacket price or less, depending on the condition of the book. Sooo, what did I do? I Googled it.
What I found is that an autographed edition in pristine condition is worth a considerable amount of money to a collector. This book was in ‘good’ condition, but had someone’s name written on the inside, and it wasn't Stephen King’s and I am not a collector of such things. I want to believe that my ‘new friend’ isn’t either, but what I do know is that the reaction we enjoyed when I passed this book on to him was very gratifying. He was gracious, openly grateful and showed off the book to his co-workers, who were interested, pointing to us, as if we gave him a Christmas gift.
The cougar teasing continued later when my husband asked me how I would respond when my young friend asks me to Prom. I smirked and replied that Carrie would probably be a more interesting prom date.
However, if I ever find that book on eBay or AbeBooks , I will hunt him down like AnnieWilkes and bury him in the Pet Semetary.
Wednesday, April 17, 2013
Something I Really Want to Say About Mother’s DayLike most moms, I’ve experienced some pretty different and interesting Mother’s Day gifts over the years. On this day some Moms will be given gifts that might have Mom give pause and think to herself, “hmmm, did I drop you on your head or something when you were younger?” What she might really want to say is, “What were you thinking?”
Then again, there are other Moms who will get the kind of gift that will bring tears of joy, gratitude and maybe pride.
If you’re lucky enough to have Mom still with you this Mother’s Day, I really want to say that there are particular cues and clues your Mom might offer when you ask her what she would like for Mother’s Day. Some moms are coy. When asked what they want for Mother’s day, they wave you off and say with a breathy sigh, “Oh honey, you don’t have to get me anything.” This is a lie.
You may not have to get her anything gift wise, but you’d better have a least a pretty and elaborately designed fru-fru die-cut Hallmark card with gooey sentimental verse, in the mail, and delivered no later than the Saturday before Mother’s Day. Thursday or Friday is better, it gives her a day more to show it off and admire it as it is displayed on top of the television. This also indicates that there was a lot of forethought in this particular selection. Moms like it when their kid thinks about things in advance. It shows good training.
That very same question to a different Mom might get you a response like, “Please, you really don’t have to get me anything, just a card if you want.” This would be my response and it is not a fib. I really don’t want the card, but if you must, don’t waste a stamp, because I know you’re going to stop by anyway. I will still proudly display it on top of the television in recognition of your thoughtfulness and good training.
Pay very close attention if, when asked that same question, you get a response like this, “Just once, I’d like to stay in bed all day, drink my coffee with the newspaper and my book, have some Chinese food delivered around 2 o’clock and just decadently hang out in some solitary time.” This is what I would really want. This decadent self-indulgent wish can only be achieved if the house has been vacated. If you counter the suggestion that this scenario could be achieved in the living room, this is a fantasy on your part, even of the house is empty. There are too many ‘to-do’ things in plain sight of moms that you simply do not even have in your field of vision. What she really wants to say, and means, is “It’s a day alone in my room or nothing.” Unplugging the phone is an added bonus.
If you plan to make your mom dinner and you ask what she would like, make the meal that she asks for. If she asks for meatloaf and baked potatoes, make her meatloaf and baked potatoes. Again, a counter suggestion for something you might find more tasty undermines the offer of cooking for Mom in the first place. If Mom asks for something specific and you are financially able to get it for her, get it. Moms wouldn’t usually ask for something material on Mother’s day unless it is very important to them and they don’t want to leave you to your own devices. How would you know if it’s something she really, really wants? She will use the word “really”, as in, “I really would like to have a day at a Spa”, or “ I really would love to have a new set of golf clubs.” The word “really” in Mom vocabulary really does mean, “really”.
Moms are sincerely grateful when their little ones give personally created gifts to their Mommy. It is a warm and fuzzy heart filling feeling when a little one gives his or her Mommy that little plaster cast of a hand print, with a poem like this, “Here is my hand, So tiny, so small, to hang somewhere upon your wall.”
Think of the smile you might bring with something like a plaster imprint of your grown hand, “Here’s my hand, not so tiny, not so small, if you ever need me, just give me a call” and add the simple sentiment, “Thanks for being my Mom.” There is no price on that kind of clever and sincere sentiment. Priceless, creative and sincere.
To men I really want to say, “Don’t expect your wife to buy your own mother’s Mothers’ Day card.” If you’re already buying a card for your wife, include your own Mother’s while you’re at it, unless, of course, your wife forbids you from making that selection. That also indicates good training.
Overall, Mothers’ Day shouldn’t be a complex ordeal. It is simply one day that officially and maybe a little superficially honors Mom. Mothers’ Day is the occasion to honor the gift of our own mother.
It’s our opportunity to shower her with a little more love, care and warmth that we might not take the time to do throughout the rest of the year. No material gift can match our love for Mom, but it does attach meaning and significance to the occasion in our own small way.
Here is one final sentiment that I really want to say about Mother’s Day. My own mother is dead but I remember her every Mother’s Day with purchasing the card I would have given to her and I give it to my Mother-in-law. She loves it and puts it on top of her television, right next to the one I purchased from her son and me. I mail it, of course, so that it arrives by Thursday.
Wednesday, March 27, 2013
Mikey’s Journey started15 years ago.
My grandson Michael is my daily inspiration on many levels. He was born a healthy baby in January of 1998, a little early than his due date and just barely six pounds, but 20 inches long. Because he was so long and leggy, he looked like a miniature old man with scrawny legs, but he fattened up soon enough.
He was the first grandson and second grandchild born to our family. After about a month he began to develop unexplained and irregular shaped bruises on various parts of his body. His Mom, my daughter, would point them out to me, wondering what they could be. Although he was steady in gaining weight as a newborn should, he was born small and appeared a little anemic. His bruises were attributed to anemia by his pediatrician, even without the benefit a blood test to verify or disregard. Although Mom continued to express concern over the bruising and other seemingly minor instances like spitting up his formula, it was assumed that she was experiencing New Mommy hysteria, overreacting to things that seemed to have valid explanations. After a week long series of twice a day phone calls voicing the same concerns, I finally said, “Honey, I think you need to relax. Babies are very unfinished human beings, they make a mess and just need to be hugged, fed, and kept dry”. I went on with more motherly advice, “Now, if you can’t relax and enjoy him, give him to me.” These were words that would soon to come back and bite me.
At about seven weeks old more bruises appeared, mostly in weird places like his forehead or chest, some irregular in shape, some distinct, but baby Mikey seemed well and generally calm for a newborn. One night, Mom called me and complained that he began ongoing crying, was inconsolable and obviously uncomfortable. I suggested a receiving blanket wrapped tightly around his tiny body, which seemed to bring comfort, so the discomfort was attributed to colic.
Mom returned to work, and within the next few days received regular phone calls from the sitter telling of a wracking cough and vomiting. Another trip to the pediatrician brought no relief, Mom was told by the pediatrician her child had a cold and to expect it to get worse before it got better. The cough did seem to get better, however Mikey continued infrequent vomiting and was generally uncomfortable.
At the end of her first two weeks after returning to work from her Maternity leave, Mom called me alarmed that something serious was wrong with Mikey and was bringing him to my house to check him out. When I saw him I knew immediately that something terrible was wrong, but did not know what. He was lethargic, clammy and his usual light coffee/carmel color complexion was almost ashy grey. After another call to his pediatrician she was instructed to go directly to the Emergency Room.
Both parents took him to the local ER, his body temp was 96.5, the ER Docs took a few x-rays, and after about 3 hours of waiting and nothing definite determined, baby Mikey was discharged with instructions to bring him to his Primary doc the following day. Through the night, Mom noticed jerking limbs, but she did not recognize it as seizure activity. With the early morning visit to the doctor, they were sent to CHOP where he was admitted with unexplained seizures, sedated and quarantined in the ER. After a long day in the Emergency Room both Parents were urged to go home and get rest, while the staff continued to work on a sedated baby.
The following morning, Mom got a call from hospital that baby had a difficult night and they should come to hospital. Hospital staff escorted family to conference room and announced to Mom and dad that ‘Someone has hurt Michael’. At that point in time, his injuries were (by this time) healing broken ribs (at least 2 weeks old), torsion fracture of left leg, also 2-3 weeks old (a spiral type of break often happens when a child jerked or wrenched from position or from the arms of someone holding him), bilateral retinal hemorrhages, a parietal skull fracture (not even 24 hr old) causing a sub-arachnoid hematoma and brain swelling, which was the reason for the lethargic and weak condition that his mom found him the previous day after she left him alone with his father while she ran errands.
Mikey was put on life support to avoid cardiac arrest while seizing and to assist oxygenating his brain. The initial prognosis was not good because it was not known what and how much brain damage was done or exactly what caused the brain injury. Eventually the perpetrator that caused this abuse was identified as baby’s biological father. Initially he claimed that while going through the bedroom doorway that the baby’s head hit the door jamb and that although the baby cried he seemed to calm down when put in his crib. I know plenty of moms and dads that have gone through a doorway while carrying a baby and accidentally hit baby’s head on the jamb and while it probably smarted at the time, babies don’t routinely gain head injuries as a result of said doorjamb.
After some interrogation by the police Mikey's biological father finally admitted that he threw a ‘Mommy bear” at the child, a plush bear with a hard plastic battery pack (containing four ‘C’ batteries) inside to play sounds similar to womb. It is supposed to be a soothing tool for infant babies. He admitted that he threw this at the baby while he was strapped in his infant seat, because this 3 month old baby would "not cooperate, would not stop crying". While it is likely that this was used to strike the baby in the head, it is also characteristic of abusers and likely that when the baby did not stop crying, even after the impact of the battery pack, that he took baby out of seat and slammed him down into the crib. Both of these actions caused the most irreversible harm. The impact of the bear fractured his skull, and the throwing down into the crib caused the retinal hemorrhages, forcing the brain to bounce off the backs of face plates and skull. Think of a bobble head doll and how hard the head would snap back and forth as you smacked it against a wall or table top. That kind of impact and momentum on the soft tissue of a baby’s brain banging against the bone of the skull is what causes Shaken Baby Syndrome.
Retinal hemorrhages are pools of blood packed behind the retina and tissue of the eyeball. It is hoped that the blood will dissipate back into the body. Baby Mikey’s retinal bleeds were so bad, it was first decreed by docs that he would be permanently blind.
The brain swelling subsided and after a week, he came off life support and maintained the ability to suck on a bottle, which was the most positive sign. Many brain injured infants have to be coaxed and retrained to the most basic natural instincts, like sucking on a bottle. Although Michael had no problems with taking a bottle, he had to relearn the most basic motor control like holding his head. At this time he was 12 pounds, and flopped like a rag doll. His eyes wandered left to right, the brain searching for what it used to see and looking for something to focus on, as before the skull fracture.
He had just a raspy chirp for a cry because his vocal chords were swollen from the intubation while on life support, but the best sound we ever heard was when he howled at being given a bath. A coarse and hoarse cry but it had gusto. It energized our hope for a recovery.
Along with Baby Mikey's’s physical therapies in preparation to go home, a support therapy was begun for his Mom: the rehab staff stepped up and helped to re-direct Mom to find the strength to pick up the pieces of her life and focus on her son's life. Mom spent nights with her son after she finished her workday, and the nurses and social worker on many nights of her 1 month stay at CHOP’s rehab center, spent one-on-one time with her, often just to let her know that this was not the end of the world, that she and her baby would go on, especially with the network of family support that was present and often by Mom’s side. She claimed she had no problem with life going on but at that time did not think she should have to sever connections with the man who hurt her baby and who was her baby’s father or his family. This was a serious problem for the Social Services worker. If she was to come home with Mikey when he was to be discharged from rehab, Mom had to relinquish legal custody of her baby to her parents while she continued counseling for herself. Over the course of two years she faithfully attended counseling and eventually severed her emotional connection with the baby’s father that brutalized her baby. It was difficult to watch, as she struggled with taking ownership of her past decisions and her uncertain future.
Michael has overcome most of the negative prognoses. He walks and talks, has some difficulty with articulation, but recognizes it and perseveres to be understood. As a toddler he had high muscle tone in his right leg (turns inward at the ankle) and often clenched his right hand. This continues occasionally and he consciously works on loosening up his hand. With the onset of puberty, his growing pains have caused some of that achiness to return. He is active in sports that afford him a level playing field and there is a budding interest in the performing arts, but puberty re-enforces adolescent insecurity.
He has regained considerable eyesight, he has a pseudo retina “fold” in his left eye (side of the impact), this is like an empty ‘pouch’ that clouds the center of his vision, caused by the amount of blood that was pocketed there. He has only clear peripheral vision in the left eye, and wears glasses to assist the right eye. When he is tired both eyes sometimes drift, this is caused by the brain being just too tired to focus, which sounds almost too simple. His skills and progress continue to be charted as delayed at about 1-2 year behind his age. He does not transition well away from preferred activities. He must be prepped for a change of setting or routine. Even when prepped he sometimes has emotional outbursts and then drops to the floor, although he will never deliberately put himself in a position for self-injury, he balls up his body or becomes dead weight. Even with his emotional outbursts, he is generally pleasant, often very witty and good natured. For every plateau we think he hits, he snaps out to a new level before we accept that this may be as far as he goes intellectually and emotionally.
Emotionally, the family must be all on the same page as far as discipline and structure, no matter how painful or unfair it feels for the adults, he needs to respect the structure of rules and routine, mostly for his own safety. This is probably the most difficult thing for all of the family knowing the brutality he suffered as a helpless infant.
In school, Mikey’s school program requires him to have a one to one aide to assist and mentor with decisions and tasks. He has attended some type of contained classroom scenario since the age of 4, always with other children of various different disability, the primary purpose being to develop socialization skills. He attends a facility for only special needs students, that houses classes on a campus that serves K through 12 and a continuing vocational education program. There was once a goal to transition him into a mainstreamed classroom situation and develop life skills to support independent living. That plan failed miserably with emotional breakdowns due mostly to the over stimulation of the atmosphere of the normal elementary school.
Socially, he prefers to be around adults, probably because of the attention, but sometimes plays well with children in his age group. Like most young kids, in the earlier grades of 1 thru 3 Mike liked to be in charge, he was often the ‘model’ child for others in his class, so they will know “how to do it”. In the later grades he has not been so forthcoming and needs to be continually encouraged. Adolescence is proving to be especially difficult since he is a extremely naive and gentle personality. Recently he has been medicated for his emotional outbursts. This was a hard decision for his Mom, but after a second instance where school personnel felt it necessary to put Mike in a straight jacket, so as not harm himself or others, it was time to seek additional help and tools. This has been another success in his journey. He is relatively independent with his medication schedule.
Although he likes to learn, he does not seek out new things to learn, that’s the transition thing again. But given time to vent and time to realize he must do the task, he will eventually get into it.
Until recently he had an extended school year and attended school through the summer, having a summer vacation of only 3 weeks in August. It seems like a long school year, but the extended school year does not allow for the normal digression some kids get with summer vacation.
This first summer off from the extended school year he participated in a theater camp and although he has the sight and reading problem he was cast as the Top Dog in the production Aristocats. He thoroughly enjoyed the whole experience. Likewise for us, it was an awesome sight seeing him perform front and center on the stage of a packed theater.
We were blessed with babysitter that took Michael on and reinforced structure and routine within a community setting.
When she could see how he was going to interact with the rest of the daycare crew, she put his bar a little higher, but only when she was sure that he could manage it. She gets the most credit for how much he has managed to get through many of his daily challenges, as well as pushing his Mom to do the right thing even if it would be inconvenient or uncomfortable.
Hopes for Michael’s future? Who knows? He has surpassed most milestones that may have been set for him. Every single one of his docs are amazed at his progress to the present and we all marvel at his potential. When we enlisted with his neurologist , I dropped off his CAT scans and hospital records to be previewed by this new doctor. After looking at the films and then meeting Mike (he was 6 mos. old at the time) he could not believe that he was the same baby that the films and records should have portrayed. His brain damage was that bad. His vision doctors continue to use his films to teach student doctors that even the most severe bleeds can heal.
Our lifelong journey with Mikey was defined for us when he was about 20 mos. old, he hit a long stagnant plateau. With no sign of new progress, we thought this ‘was it’. All he did was belly crawl, eat and sleep, he barely sat up unless he was forced to sit up. On this particular Sunday afternoon, his PopPop was watching football in the another room, the French doors were closed, Watching football can generate some animated language and PopPop was screaming at the television to his team that was playing 500 hundred miles away, “Get the F*&king BALL”. This kind of emotional outburst was pretty common on Football Sundays and nobody paid much attention to it. While I sat at the kitchen table and Mom on the sofa watching her television show, Michael quietly climbed up opened the doors and pushed in a ball to PopPop. Once the shock wore off that he acted so independently, we all cried. Once again he showed us we were not done working. It’s been that kind of roller coaster ride over the last 15 years, but Michael seems to know how far to go as he leads us on this journey with him.
If there is a reason for all the bad that happened to Mikey in those first months of his life, I believe it was to save his mother’s life. I believe that had she stayed, she might be dead or would be in the worst unimaginable spot in anyone’s life, a situation that she never would have been able to safely live in and clearly did not have the courage to remove herself from, at that time. I frequently have a one sided conversation on my head, more like a rant “How did this happen? Do you even ask yourself that question? You were raised in a different world than you have chosen for yourself. I come from a world NOBODY would have the opportunity to hurt my child. I come from a world where if someone were to hurt my child out of frustration or anger, I would have to hurt them back, maybe even kill them. Probably not kill, but definitely hurt them. Definitely. Count on that.”
But because she is my daughter, my child, I bite my tongue and keep that conversation one-sided.
She probably has similar one-sided conversations with herself. I often see a sadness in her that she wishes things were easier for Mike. Every Mom wishes that for their child, no matter the life circumstance.
How could things be different for Michael? Certainly as a veteran Mommy, I know there are things that I would do differently. BUT, that is easy for me to say. We always have different standards for how we think our own children should be as parents and adults. I think that Mikey’s Mom does the best job that she can when it comes to being Mikey’s Mom. It’s not the job that I think I would do, But I am not her and I am not Mikey’s Mommy. We all have to find our own way through life, just like Mikey.
Mikey's life is full and he has a diverse support network that will serve him well in most of his life situations. He is accepted for who he is but not given a free pass for unacceptable behavior just because he has some disabilities. He is expected to fit in with the rest of the family, mind his manners and do as he told. Most importantly Mikey is loved and a very loving human being who is naturally kind and considerate. He is truly a very graceful soul.
He inspires me at some of my lowest emotional moments and reminds me everyday that things could always be worse. For the moment we’re counting our blessings as we travel this road with such a great kid.