Wednesday, March 27, 2013

Our Journey with Mikey

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.
His disabilities:
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.

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