There's nothing "wrong", you just need to adjust your perception.

Through the years and the stares and looks, there's without a doubt always one brave little soul who will ask "what is wrong with him".  I say little, because it's almost always a small child asking their parents from across the street, in a store, or walking around the mall.  A part of me cringes inside and my brain kicks into over-drive. I wonder how the parent would respond to their child, as I see and hear the parent try to pretend my son isn't there and walk away as fast as they can out of embarrassment.

Part of me gets angry that the parent taught their child that anyone who looks different than them is somehow "wrong" and "not normal" --that they have not taught their child that each human being is a beautiful gift to this world.   Another part of me feels it is my duty to educate and help spread acceptance of those who are "different".

One particular occasion I can remember vividly was when both my children were small.  Sarah was probably around 4 or 5 and Joseph 6 or 7.  The three of us were inside a local mall doing some shopping when I had to stop and feed Joseph his lunch.  Joseph had a G-tube at the time, which is a tube that is inserted by a quick surgical procedure through the surface of his skin, through the wall of his abdomen, and into his stomach.  This tube has ports that allow us to hook a tube or a syringe directly to it so we can feed Joseph his formula, as he is unable to eat from a spoon or drink from a cup or bottle. 

I sat down on a bench and put my backpack with all of Joseph's feeding supplies next to me, and had Sarah sit down beside that so I could keep an eye on her when I fed her brother.  The bench we were sitting on backed up to another bench facing the opposite direction.  A little boy was sitting there with his mother and started peeking over the bench to watch what I was doing.    At this moment I had a series of internal discussions with myself as mentioned above.  "Do I want to be an educator?" "Do I want to explain to this child what is going on so he doesn't think Joseph is some kind of freak?" "Do I really have enough energy to do this right now?" At that time I decided to be an educator.

I looked at the little boy and said "Would you like to come over and see what I am doing?" as he craned his neck over the bench to look at the syringe and formula I was holding.  He looked at me with eyes wide as saucers and glanced at his mother.  She said "Go ahead."  The little boy came around to the other side of the benches with me and stood beside Joseph.  I nodded to Joseph and said "This is Joseph, he eats differently than you and I.  He eats directly into his belly.  He doesn't have to taste any yucky medicines or foods he doesn't like, they go into his stomach to give him what he needs to grow strong and healthy. Isn't that cool?"  At this point I noticed the little boy's mom craning her neck over the bench to see what we were doing as well.  She was just as interested and curious as her little boy was about what we were doing.  I looked back to the little boy.  He said "Woah, that is so neat!  So he doesn't have to like, taste broccoli or spinach and that yucky stuff?"  "Yep", I said.  

And that was it, the little boy's curiosity was satisfied, he walked back to his mom on the other side of the bench, and they went on their merry little way.  I like to think that I had a positive impact on that little boy and his mom...that they would forever look at people with disabilities as people who are different-not scary, weird or freaky.  I also secretly wished that I made him wish he had a G-tube and didn't have to taste his yucky medicine or food either. ;)

There have been many many times I have been with Joseph in stores and little kids will walk up and say "what's wrong with him?" as their parents turn crimson in embarrassment.  I insist that nothing is wrong, that Joseph moves, communicates and looks different-that doesn't mean wrong.  I stress that different is okay and to ask questions but not to assume Joseph cannot understand what you are saying.

The lesson here is we can either be stewards of change and acceptance, or we can resist, become bitter and long for that which we will not have.  Be an agent of change, of love and acceptance for a diverse world is one of the most beautiful worlds we can imagine. 

Joseph sees differently-what the heck is CVI?

As explained in this post, Joseph suffered a traumatic birth injury that left him with numerous  complications related to his brain.   Today's post will try to explain CVI-cortical vision impairment.

Technically speaking, Cortical Vision Impairment is a term used to describe vision impairment from a brain injury.  Pretty vague isn't it?  Another crap chute diagnosis we have been told over the years.  What it means is Joseph's brain was so damaged that the parts of it that interpret what he sees do not work as they should.  His brain does not process what he sees correctly because the signals to his brain have been interrupted by the brain damage.   So you and I may see a purple eggplant but Joseph's brain cannot process that it's a purple nor an eggplant, so he may not know or understand what he is seeing.

Joseph, myself and his teachers have been lucky to work with some highly trained specialists from the VCU Virginia Deaf-Blind project.  They showed us many techniques and methods to improve his quality of education and life as he tries to access his world.   The Deaf-Blind project has held training sessions at his school for Joseph's teachers and therapists through the years to show them how to present objects to him, what colors he may prefer, how to block out background vision "noise" to help him focus on an object, and how to help him make choices and communicate some of his preferences of things he prefers to see, hear, do, taste, etc.

Things we have learned from VCU's guidance:

Joseph may prefer one color over the others.  Over the years we think he prefers the colors red and yellow from the positive responses we received.

Joseph may need to have objects moved so they catch his attention. What I mean by that is if you hold up a toy for him to see, you have to shake or move it to draw his eyes to it. 

Joseph has a preferred location or field of vision to present objects.  If you are facing Joseph, the best place to show him something is slightly off center to his right side, at about 120 degrees.  It is also best to stand or sit to Joseph's right if you want to talk to him.

We also noticed that Joseph likes things that light up, and it appears as though he may try to follow them with his eyes.  He prefers that the same objects are presented to him, as it takes him a while to get used to new things. 

You also need to take your time and give Joseph lots of time to process what is going on, what he is seeing, and give him time to figure out if he likes what he sees or not.  Patience is definitely a virtue and even his little sister Sarah presents objects to Joseph and gives him appropriate wait time to process.

In summary, there is no cure for CVI (notice a theme here?) but there are ways to better communicate with Joseph as outlined.  It definitely was devastating to hear yet another impairment Joseph has added to the ever growing list, but sight is only one of 5 senses, so he can access his world in multiple ways. Following these guidelines when interacting with Joseph will make your whole experience with him better quality and more meaningful. 

What is Cerebral Palsy?

How many times have you actually seen the words cerebral palsy? When somebody says they have a child with cerebral palsy do you cringe and does it make you feel sad? That is definitely the reaction I get when I tell people my son has cerebral palsy.

Have you seen the commercials advertising for attorneys to help file lawsuits against your doctor if "you or someone you know and love has cerebral palsy"? That's because a lot of cases of cerebral palsy are caused by a mechanical injury like Joseph's. Cerebral palsy results when there is some deprivation of blood and oxygen to the brain.  Does that sound familiar?  Remember the post about HIE-Hypoxic Ischemic Encephalopathy?  Lack of blood and oxygen?  Yeah, that one!

Joseph's cerebral palsy was caused by his HIE "event" during the birthing process. There are other causes of CP like fetal stroke, maternal infection, but I'll leave that to you read through at my favorite medical education site, the Mayo clinic. 

Cerebral palsy affects no two people the same way.  There are several different categories of cerebral palsy but I'm only going to discuss Joseph's type, severe spastic quadriplegia.

Joseph's core and trunk are hypotonic, meaning he has low tone. His muscles do not have the correct signals to contract and hold him up like you and I can. Whether you realize it or not, your muscles have to contract to help you sit up.  The nerve signals from his brain to his spinal cord and muscles were messed up during his birth trauma and malfunction in their duties. 

Joseph arms and legs have very high tone and are characterized as spastic. Just like the cause of the low tone, the high tone is caused by messed up signals to the nerves and muscles in his legs.

The severe spastic quadriplegia has significantly affected Joseph's ability to move.  When he was younger and weighed less, he moved his legs more than he does today.  In fact, he used a gait trainer and he would take steps.  I even have a video of his awesomeness.   

However, as Joseph has grown taller and gotten heavier, the muscle tone imbalances have caused contractures in his arms and his legs-despite wearing braces on them, stretching and range of motion exercises.  Contractures are a shortening of the muscle and tendon due to the spasticity and his lack of voluntary movement. 

Over the years we have tried Botox injections in the muscles in his legs and arms to help release some of the tone that causes those contractures, but the cost/benefit has not proven positive.  The injections are painful, require Joseph to go under general anesthesia, and just don't provide substantial quality of life improvements worth the cost of putting him through all that misery.

One of Joseph's many medications he takes for his spasticity is called Baclofen.  It serves as a muscle relaxant to help address some of the tightness. However, Baclofen does not pick and choose what muscles it acts on, so the medicine makes him severely constipated.  The severe constipation causes a whole other set of issues and medications.

Joseph also wears braces on his feet and hands to help slow the progression of the contractures, but there is no magical solution right now that will stop them from progressing as he gets older.  You can only stretch and wear braces for so long and then it just gets irritating. 

One of the biggest problems cerebral palsy has caused for Joseph is scoliosis of his spine.  Because of the low tone in his trunk and the imbalance in his muscle tone, his spine has been misaligned and compromised.    The curvature is measured in degrees, and Joseph's is pretty severe.  It is now to the point that it is compromising his lung capacity, basically squashing one of his lungs smaller because his spine is curved so severely.  

There are children who undergo 10+ hour long surgeries to fuse their spine to resolve scoliosis. However, the risks associated with putting Joseph through such an aggressive and long surgery are too great.  This falls into the category of quality of life vs quantity of life. 

There's a 30% or greater chance that Joseph would not survive through the anesthesia required for the 10 hour long surgery, and the recovery can take upwards of over a year.  His father and I are not willing to take our chances with his life with those odds, nor do we want to intentionally cause him more pain and discomfort that he already has now.  

The cerebral palsy and low muscle tone also affect Joseph's ability to eat.  He doesn't have the coordination to do the chew, swallow, breathe combination that I bet you never even noticed you have to do when you eat until you read that.  When he was a baby out of the NICU, and up until 13 months old, feeding Joseph a bottle was an hourly struggle.  The only reason he COULD take a bottle is because he was relying on the sucking reflex that babies have.  I counted every single ounce of food he took in, and it drove me crazy.  I also had to give him all his medications orally, which was extremely stressful and difficult.  Joseph ended up with a feeding tube after he lost his sucking reflex, but that's another blog post. ;)

So that's Joseph's cerebral palsy in a nutshell.  The lack of blood and oxygen caused brain damage, which caused the signals to nerves and muscles to malfunction, which caused the contractures, scoliosis, and his inability to eat. The progression of the cerebral palsy and its affect on Joseph's body will continue to manifest as he gets older and heavier, and we will continue to face the challenges as they are presented. 

Diagnosis: Lack of blood and oxygen

What's the big deal about diagnoses?  When you live in the world of people with disabilities, there is so much emphasis on a diagnosis.  Doctors, nurses, insurance companies, therapists, schools....they all want a "label" for the "thing".  As a new parent handed a diagnosis after a traumatic event, you kinda feel like you are punched in the gut.  

So what is Joseph's diagnosis?  Officially, one of them, and the primary one doctors write on all his medical records is:

HIE-Hypoxic Ischemic Encephalopathy

Hypoxic- Lack of Oxygen

Ischemic- Lack of Blood

Encephalopathy- Brain damage/affecting the brain

Joseph's HIE was officially diagnosed by studying his MRIs in the NICU at Inova Fairfax Hospital. His little body was deprived of oxygen and blood for varied periods no less than the 13 hours I was in labor, before his heart gave out, requiring an emergency c-section. Most of the doctors from the Virginia Board of Medicine who reviewed our case indicated the OB should have delivered him no later than after 4 hours of labor given our symptoms of distress.

I remember the neurologist and her reaction when she approached Joseph's father and myself to tell us the news about his MRI.  She was physically distraught, and pulled us into a private consultation area they had in the NICU for these types of things. I adored this neurosurgeon, she was pragmatic, although a bit neurotic, but it made her more endearing as she gave us some of most terrible news you could give a parent about their child who almost died during the birthing process.

She showed us Joseph's MRI, and where there was supposed to solid matter/brain tissue, it was liquified.  I did not understand what I was looking at the time, but the doctor explained that when there was brain damage on an MRI, it showed up as very bright areas of light on the brain as "calcified tissue". She kept pointing to sections all over his brain, showing us all the bright spots--almost the entire brain was damaged.  The front lobes, the parietal lobes....the only part that didn't seem to have damage was the brain stem.  The neurologist told us she had NEVER seen a brain that damaged before.   I can remember her saying that like it was yesterday. How are you supposed to react when a seasoned professional medical doctor is obviously shaken and disturbed from looking at your child's MRI?

What's weird is that you can physically see the impact of the brain damage on Joseph's skull.  The neurologists told us this would happen, but you are never prepared for these things.  Since so much brain tissue was damaged, Joseph's brain was not going to grow and expand and push out his skull to a nice uniform shape we are all used to seeing on a human.  He has a horizontal ridge in the middle of his skull where the fontanels overlapped because his brain did not have the expected pressure to push them out.  A nice military style flat top and a thick head of hair cover most of that, so the only thing you may notice is that Joseph's head is very small.

I feel I can say HIE affects no two people the same way as I've gone through this journey  and met other children with HIE.    Symptoms can be mild from subtle muscle movement disorders, fine or gross motor delays, to more severe issues with respiratory and digestive systems, requiring feeding tubes, seizure medications, and similar complex medical needs.

Over the years medical advances have provided some hope to help minimize the effects of HIE on newborns.  I know things like cooling techniques have been used to help preserve the blood flow to the brain, as well as hyperbaric oxygen treatments.  The thing is, I don't believe there is any commercially available option to heal or regenerate brain cells that have been damaged. At least there weren't 15 years ago when Joseph was born.  

There aren't any magical treatments that will "fix" Joseph's brain, but maybe one day in our children's future, that possibility will be real. The best thing we can do is provide Joseph the best life he can while he is here with us, which I think we've done a pretty good job so far!

The Delivery Gone Wrong

The Google Doodle for June 7 honored Dr. Virginia Apgar, whose work in obstetrics led to the development of the Apgar score.  The Apgar score is a quick assessment of how well a newborn managed the birthing process. Apgar scoring is done at one and five minutes after birth, assigns a score of zero, one or two for each of the following areas:  Appearance, Pulse, Grimace, Activity and Respiration.  This gives us APGAR….thus the name of the assessment. As each area is given a score of 0 to 2, and a healthy APGAR score would be 7, 8 or 9.  Rarely babies get a 10 because they have blue hands and feet as they get used to living outside of momma.  Babies with less than an APGAR score of 7 may indicate a baby needs medical attention.

Today’s Google Doodle was timely, as I wanted this next post to introduce you to what happened during Joseph’s birth in a little more detail. When Joseph was born, his APGAR scores at 1 and 5 minutes were 0.  That’s a big, fat ZERO.  Joseph was clinically dead when he was born. Let that sink in for a few seconds.   We can get into a discussion in the future about the quality of life versus the quantity of life, but the doctors were just trying to save the life of a baby.   The neonatologists did CPR on Joseph for almost 25 minutes before they were able to get a pulse and he took a breath on his own.  There were several things that led to this, a few which are called out in a report from the Virginia Board of Medicine, and of which the delivering OB was found negligent. 

To break down a few things I can explain:

1. Joseph had the umbilical cord wrapped around his neck.  Twice.  So every time I had a contraction, the cord pulled tight and restricted the flow of blood and oxygen to his body.
2. Joseph had what they call decreased beat to beat variability.
3. Joseph was so stressed during the labor process that he had what they call meconium...dark stained meconium to be specific. Joseph had stooled in utero and then was recirculating that into his poor little body.
4. I had pre-eclampsia during labor, had extremely high blood pressure (100+/190+) which was treated with magnesium sulfate that caused Joseph more stress.
5. The doctor order pitocin to induce labor, which was contra-indicted given all Joseph’s and my symptoms. As soon as the pitocin was administered, Joseph’s heart rate dropped drastically, and eventually stopped.  

I am linking a pdf of the Virginia Board of Medicine’s report issuing a REPRIMAND on the delivering doctor’s permanent record.  The reprimand has little to no significance in the grand scheme of things.  This is public record, and if you go to https://www.dhp.virginia.gov/medicine/ you can look up the reprimand on her license.  She still practices, she still delivers babies, she had no real consequences for the negligence the Board of Medicine identified her as guilty of committing. 

My Memory of Labor and Delivery

Throughout my life, I have always been an organizer.  Growing up in Western Pennsylvania, we lived in a mobile home and I had the tiny little bedroom in the middle of the trailer.  It couldn’t have been any larger and 8’ by 9’.  I kept my room extremely neat and clean, everything had its place, and it was constantly organized and re-organzied to maximize space and efficiency.  

My organization carried over to my career and motherhood, and particularly paperwork.  My filing system covered everything from insurance policies, to receipts for Christmas presents, even notes from conversations I had with doctor’s offices and customer service agents for durable medical equipment.  (Saving all this paperwork has proven invaluable as a tool to holding people accountable, and I will explain that one day in another post.)

When speaking to some new coworkers recently they asked me to tell them “what happened to Joseph”, and I remembered this journal post I wrote soon after his birth.  It was handwritten in one of those black and white composition notebooks, but I transcribed it years ago and stored it in my Google Drive.  A quick search one day and I found this, which I am leaving untouched since it was written.  I still remember his birth day like it was yesterday, it flashes in my mind like scenes from a movie.   

Here’s that journal entry:

My Memory Of the Labor and Delivery of my son, Joseph Hershberger.

Written in a journal days after his birth.

Lee Ann Hershberger

Went to bed on 6/26 around 10 pm and felt what I thought were contractions.  They weren’t too strong, so I wasn’t positive, but something inside of me told me this was it.  I was going into labor. I tried to sleep for a bit, but the cramps were getting uncomfortable.  I told my husband to go ahead and sleep and I went to the living room with my physio ball and turned on the TV.  I sat on the ball as I labored during the night and even though the TV was on, I wasn’t watching it.  I can’t even remember what was on TV.  My contractions started becoming more regular around 2 am, so I started timing them more carefully and writing them down.  Around 3 am, the contractions were 5 minutes apart and lasting about 1 minute.  So I called Kaiser.  The nurse called the doctor on call and then called me back.  She said I was probably in early labor, but come to the hospital anyway.  So I woke up my husband and told him I was going to take a shower then he might want to—I knew it might be a while before either of us got one again.  The shower felt good and relaxed the contractions a bit.  We took our time and were very calm; we even decided to stop at Sheetz to have a bagel and some water and Gatorade.  We also knew it might be a while before we ate.  On the way to the hospital, (it was about 4:30 am now), the contractions became more regular again, 5 minutes apart for 1 minute long.  We headed to Fair Oaks Hospital and checked in at registration.  Since I was pre-registered, it didn’t take long to get to triage.  A nurse named Pam took a bit of medical history and strapped on the fetal monitors and a BP cuff.  After 15 minutes or so, she went to call the Kaiser doctor on call-Dr Vu, for a consult.  My BP was a little elevated, and even though I was only 2 cm dilated, the decided to admit me.

My husband and I walked across the hall to the labor and delivery room and got settled in again.  So far the contractions weren’t bad, and we started to get excited.  Dr. Vu checked my progress and decided to give me pitocin. The contractions got more intense and the only way I could manage the pain was by standing up and hugging my husband during the contraction.  The nurse, Ryan, came in and said that Dr. Vu wanted me to stay in bed because of my high BP.  At that point, I gave in and asked for medication, I was too uncomfortable.  Ryan gave me a shot of Nubaine to take the edge off until the anesthesiologist could give me the epidural.  My husband noticed that the baby’s heart rate dropped from the 140’s to the 120’s after the Nubaine.  The anesthesiologist came in and finally gave me the epidural.  It was hard to bend forward enough and seems like it took a while to get it in, but one the medicine started working, I felt much better.

Dr. Rulez was on duty now and she decided to break my water to speed along labor.  When she did, she said there was thick meconium all over the baby.  She sounded concerned and said I was going to have to have a C-section.  I was okay with the decision; I just wanted the baby out.  She said I wouldn’t be able to hold the baby until after the doctors cleaned the meconium out of his lungs.  She said she was going to finish up with another lady who was in labor and was pushing, and then we would go do the c-section.  Ryan gave my husband scrubs and told him to go ahead and start putting them on.  The anesthesiologist came in and gave me another bolus of medication and that’s when Todd noticed the baby’s heart rate dropping to 110, 100, 90, and 80.  He ran to get Ryan and then chaos broke out.  Ryan called Dr. Rulez and said we need to get the baby out immediately.  I saw in their faces that they were scared.  I was rushed into the OR with Todd and Dr. Rulez spread the betadine on me and started cutting to get the baby out.  I only had the epidural at this point and it was wearing off and could feel her cutting into me.  I screamed, “I can feel that, oww it hurts” and kept screaming from the pain.  The anesthesiologist at my head also looked scared and panicked and put a mask over my face, telling me to take a few deep breaths.  I caught a glimpse of Todd right before I drifted off.  I woke up to the sound of 2 x-ray techs taking an x-ray.  I heard them say they needed to check to make sure they didn’t leave anything inside me.  My legs felt really heavy and I saw it was 2 pm.  Todd came in with tears in his eyes and looked very sad. I told him I was sorry and asked him what happened.  He told me that the baby didn’t have a heartbeat, and that the doctors had to revive him.  We started crying and held each other.  We weren’t sure if Joseph was going to live or not.  

From that moment on, all the dreams and expectations I had about what being a mother was going to be like was thrown out the door.  My son would never learn to feed himself his first Cheerio because he couldn’t move his arms to his mouth to put it in, nor would his brain function to tell him to taste it.  Joseph would never say “mama” or “dada”, learn to sit up, crawl, walk, or talk.  Joseph would never be able to run around our house, out in our yard, play t-ball, soccer, play video games, and ride a bike.  Joseph would never even get out of diapers and be potty trained.  All the things we take for granted, Joseph will never be able to do- sit up, roll over, brush his teeth, get dressed, walk to the bus stop, play with toys, eat his dinner.

Instead of living those dreams of what parenthood was supposed to be, I spent endless hours on the phone trying to track down doctors, therapists, equipment, insurance referrals, and respite care.  Most days were spent driving one hour each way to specialists at Fairfax Hospital with a screaming baby who didn’t understand why he was in the car all the time going to see doctors.  The practitioners we had to see were endless:  Neurologists, Cardiologists, Audiologists, Physiatrists, Gastroenterologists, Infection Disease Doctors, Retinologists, Ophthalmologists, Physical Therapists, Occupational Therapists, Hearing Therapists, Vision Therapists, Hippotherapy, Aquatherapy, Orthotists, and nurses.  More practitioners have visited my home than family members ever had.  I make more trips to the pharmacy to fill anti-convulsant and anti-reflux medicine that I want to think about.  My house is full of equipment to make sure Joseph can sit up, stand or lay down in a supportive and protective position.  Visits to family and friends’ houses are a chore as we figure out how to get Joseph’s wheelchair up their front steps and into their houses.  Not week goes by that I don’t’ have to fight some provider, insurance company or Medicaid for Joseph’s basic needs to survive.  I grow weary of all the staring people do when we’re out in public with Joseph.  

People frown, stare, say “I’m sorry, what’s wrong with your son?”  Every day I am reminded of that horrible day, what was supposed to be the most beautiful time in my life was the darkest and saddest.  I can’t even have the neighborhood baby-sitter watch Joseph if I want to go out, because she is too afraid of his seizure disorder and his feeding tube.  Joseph constantly gags and chokes on his own saliva so I worry every day that he may die from aspirating.  Joseph can never be left alone and will be dependent on someone to take care of him for the rest of his life.

A Re-Introduction

When I first wrote my blog Curmudgeonly Mother, I did so because writing was very cathartic for me. I was an English major in my first years at college, quickly realizing I would likely not find a fruitful career path in public relations so I changed course to Biology, then went on to become a Physical Therapist Assistant.  Those paths I chose along the way have helped me through my personal life and career in more ways I can remember. I always loved to write, and loved it even more when my high school English teacher, Dr. Simmons, made us painstakingly peer review our classmates work over and over again.  The writing came in handy numerous times for me as an adult student writing term papers and Capstone projects for my Bachelors and Masters degrees, but also came into play when I wrote procedural documents, program status reports for executives, and even when I created training sessions on project management and disability awareness.  As for Physical Therapy, that was one of the most rewarding jobs I had experienced to that point in my life. I absolutely love helping people, and as a PTA I was able to do that every day of my career. Little did I know how valuable my training as a Physical Therapist Assistant would be to my role as a mother.

Being a mother of a child with disabilities takes you on journeys that you could have never imagined before.  Those journeys are not strictly medical related though, they take you on twisted paths of human resource management, accountability, humanity, empathy, frustration, exhaustion and endless uncertainty. My background in medical training provided me with much better understanding of technical lingo when things were happening to Joseph.  I can’t tell you how many times I told doctors “You can use the big words, I understand what you are talking about.”

Having recently switched to working for 2 different employers within the last 6 months, I have had to revisit painful memories about my labor and delivery with Joseph that led to his current disabilities.  New co-workers and peers usually feel uncomfortable, literally squirming and ask "do you mind me asking what happened?” When I tell people the story, they get very sad, some have even cried as I explain to them what happened.  Then I start feeling bad because they are crying and then I end up comforting them. I really do not want people to feel sorry for me, I don’t want them to feel sorry for Joseph, I want them to gain a greater understanding of a world they may not know anything about.  I want them to use that knowledge to make a conscious decision to use that information for good in this world. I am of the mindset that education is of utmost importance and if I am given the opportunity to increase awareness and understanding of people with differences, I need to take advantage of it.  So if they take that and merely hold the door for a parent juggling an armful of medical equipment and pushing their child in a wheelchair, than I think the world is incremental better.

There is one thing that almost everyone says when they hear me tell Joseph's and my story and I have not yet figured out how to respond to it. People are always telling me how “strong” I am to deal with everything "we've been through”.   I really do not know how to respond to that comment because when dealing with it-- the uncertainty and the frustrations, the incompetence and ignorance, all you feel like you want to do is throw your head back and scream at the top of your lungs.   Maybe one day I'll figure out the right response to that comment, but now my response is “as a parent, you just do what you need to do for your child.”

Revisiting Joseph’s birth story over and over recently led me to pick up the proverbial pen and start writing again. Also, Joseph turns 15 this month. Just writing that sends chills through my body because the neonatologists in the NICU gave Joseph a 10% chance of surviving just the transfer to the higher skilled NICU at a local hospital.   And here he is, almost 15, with his moustache and all!

Recognizing my own mortality and maturity, I feel now is a great time to help break down all the aspects of what it means to be Joseph and his caretakers.  My hope is that I can bring an increased awareness, understanding, and compassion to the world many of us live in, and to ease some of the fear of the unknown.