Going, going going gone!

It happened again last night as I was shutting down Peter's computer, which seemed to be taking a bit of time. As it was slowly closing down, I, for some unknown reason, thought "going, going, going...gone " and, although you may find this hard to believe, I thought of my mother's funeral and a smile, perhaps a giggle crossed my face. The sad memories have now past, and only the "good things" come to mind. This was the "good thing" that came from a very sad time. So, here is the story.

Grandma or my mom died 14 years ago of a heart attack, which left all of us in a state of shock and grief. Sara was in the ninth grade at the time, Mike in sixth, and Peter would have been in second grade and eight years old. Remember, although Peter was eight, he looked like a four year old and acted like one also. I remember he sat on my lap through the service..so size wise... small.
Peter, however, was the one that just when your heart was breaking added that light in the dark, that was so needed at such a sad time. At the very tiny funeral home in Beaver Dam, pint sized Peter with his very high pitched voice greeted those in attendance at the door and, as I was told, said, "Are you here to see my Grandma...she went to heaven" Very unassuming, yet so powerful!

The next day, if you can imagine an extremely large cathedral like church with amazing stained glass, is where we were holding the funeral services. Wrapping up the last part of the wake, previous to the service, my brothers, sister and I were standing in the front near my mom's casket. Dennis. my very astute cousin, noticed Peter had been missing for awhile, and came up and asked the question..has anyone seen Peter? (Common question during Peter's childhood). We agreed, he had been gone for awhile. At that point, we all simultaneously looked towards the balcony. With sunlight streaming through the breathtaking stained glass window located in the balcony, was a little boy skipping across it's width. We gasped, we looked at each other, and you know that laughter that replaces the heartache...all of us broke out into a silent roar, we were in church after all. We quite never knew what the folks gathered in the pews were thinking...I do not think we cared. It was just what we needed to keep on going.

Gathering up Peter, we than had to partake in what I believe is a somewhat barbaric experience, and that is the closing of the casket. We were ushered to the back of the church, the doors were closed so we could not see, and we stood there in utter silence. Until Peter smashed that tiny little face of his into the crack of the door and watched the whole thing. And what we heard, was going, going, going, GONE! Again, tears running down our cheeks, we could not help but find the humor in this little event. Even the very somber minister, was holding back the laughter.

My mom left us with many, so many good memories. And when it came to helping with Peter, she was a saint. Somehow, I know she was watching down, laughing with us, for it was Peter during those dark days that brought us the laughter through the tears.

We are the World

Every morning I wake up and think about what I am going to write today. Sometimes, I follow my plan, and than other times I get distracted by something I see on TV which leads me in another direction. That is what happened this morning. The early morning show was telling the story of the"We are the World" remake and how that song, 25 years ago changed the world and, how that song changed "famous people" into becoming more activists, and these "famous people" and many more, are still activists to this day. So from that news blurb, I thought of how Peter, about 25 year ago, was one of the first students in the school district to be included in the classroom. If you are wondering how I made that analogy, it is one of those free thinking, loose connections moments. Ever had one?
Back to the story. Previous to inclusion, children with a special need were not allowed in a regular classroom, but rather were sent off to some special school, not mixed with the normal or average child, and really kept out of the public eye. If you think back to your own schooling, I know I never saw any child with special needs, as if they did not exist. And the one or two that were allowed in, were treated as a burden...a person who was dragging the class down.
So, thank you God for inclusion...remember the window that gets open just when you need it. Since the beginning of his schooling which included Early Childhood, Peter was always in a "regular" classroom armed with an Educator Assistant, an Occupational Therapist, a Physical Therapist, a Speech Therapist, a Vision Therapist, and a very loving teacher. Together, they worked and prodded Peter to get him to speak, read, look, participate, whatever they could to make him progress. Peter, however, always looked like he could do it, just would not do it.....makes me again wonder what was going on in his head. Everything was a big effort to him and every milestone was a huge accomplishment. Every effort put in by those individuals have contributed to the Peter we all know and love. In turn, we felt part of a system, a good system that was working. So for me and Peter, inclusion, it may not be perfect...but I put it on my list of "Good Things".
Personally, I think the best part of inclusion is not just meeting Peter's needs, but it is the other kids who are now growing up with the special kids as part of their educational experience. In the younger generation I see a much better understanding of kid's with special needs and also the acceptance, yes, less prejudice, patience that life is not perfect. Often during Peter's school years, some kind, caring parent would include Peter in a birthday party or even invite him over for an afternoon. Those were the really special parents of children in that classroom. And those really special parents always made me feel a joy that went so deep into my heart, it really is hard to describe. Think about the recent cheering of those special kids that get to play one night on a real basketball team. Think about the absolute exhilaration on the face of the parents. How cool is that? Every time I see that, the tears stream down my face. So exciting!! Inclusion....a window filled with opportunity and love for us.

Peter and his eyes

In my introduction I did mention that we were told that Peter would be blind. We lived about a year, not really knowing if he could see. Day after day I did the "follow my fingers" move, but really could not assess if he could see. So we just waited and hoped. Interestingly, Peter loved laying upside down, to the point that he struggled on my lap to position himself so his head was hanging upside down. And there he stayed for extremely long periods, content. Later, we learned it was probably related to his vision as he could see much better in that position.
About the age of one years old, we knew he could see, just not how much. Happy though, that he could see some things. At first, the doctors felt he could see shadows, but not really sure how much or what. Later, it was determined that he could see straight ahead, but did not have a visual field above or below. That became quite clear when I had the cutting board open one day and he ran smack into it as if it was never there. So. knowing this, we tried to keep his visual fields safe. As he grew, still not sure what was going on with his eyes, he wore glasses. actually very large glasses! After time, we decided he could see "well enough" without the glasses and keeping track of the glasses was always an issue. Today, if you met him, you would never know that we thought he would not be able to see. Actually, he defies all odds as no ophthalmologist has ever found an optic nerve in either eye as it is obliterated by his colobomas. As defined by Wikipedia "coloboma (also part of the rare Cat Eye syndrome) is a hole in one of the structures of the eye, such as the lens, eyelid, iris, retina, choroid or optic disc. The hole is present from birth and can be caused when a gap called the choroid fissure between two structures in the eye, which is present early in development in the uterus, fails to close up completely before a child is born. A coloboma can occur in one or both eyes". And if you looked into Peter's eyes, he looks as if he does have cat's eyes. But who cares...he can see and that is all that matters. I do wish, I could get inside his head and see what he sees, just to understand...but I can't and he has adjusted so well!
As usual there is always a special person who took the time and patience to treat Peter. Growing up, he had a vision therapist throughout most of his schooling, and an extremely patient ophthalmologist. A thank you to the doctors who treated him by patiently encouraging him to look into the machines, taking longer than normal just to do an exam, and to Linda who kept tracked of him during his school age years, she was like a school angel. Thank you for your patience, you have a special place in our hearts.

THE GPS

Driving home from the dentist today, I looked down at that tangled mess of cords which lie beneath my right arm. I had to smile, as in that mess was my GPS. For some reason, oh that would be a Peter reason, things take on new meanings in our household. Items, such as a GPS, used to give directions, is one of Peter's favorite "toys". The GPS was given to me by Sara and Mike several years ago to save their extremely directionally challenged mother from landing in a cornfield in Iowa at 200 AM in in the morning. Although, very grateful for the gift, when I learned about my friend whose car was broken into to retrieve her GPS, I decided the best place for my GPS was to hide it well under my seat. So there is stays, unless Peter is driving with me. As soon as I pick him up, his first question "Where is it?" and then he lands face first, feet sticking outside the car to retrieve his friend, the GPS. Peter than loads some unknown address, and we drive, whether it is minutes or hours, we listened to our friend tell us, turn around, you missed your turn, turn right, no turn left..and Peter laughs. She never gets upset, she just keeps reminding us we are going the wrong way. After all, we really do not need her, that is why you stop and ask people for directions, isn't it?
We, of course, know we do not need directions, we just want to be entertained. The best one is "you have reached your destination" and there we are in the middle of nowhere...and we laugh! One of Peter's outstanding features is how it takes so little to be entertained, and how the laughter in that entertainment, just feels so good! So think of us next time you use your GPS...have you reached your destination?

Embarressment

Like I said, we carried this pint sized child around until he was 5 or 6 years, maybe even older. When Peter eventually learned to walked, he seemed not to just walk, but he learned to just run, rather quickly. And because he was so tiny, he could get into the smallest places, and between the most narrowest walls that I could not possibly squeeze past, so he would be gone before you knew it. These facts will play into later stories about the neighborhood, but right now I want to tell you about the embarrassment one suffers when others deem she is not handling her child appropriately.
Peter not only ran, he squirmed and squirmed until he was free. If that did not meet his needs, loud wailing in his tiny little voice ensued. So taking him, let's say, to the grocery store was always an major undertaking. Even those cuties little tie things which by now have probably been banned, worked to no avail. Those stressful grocery store visits almost always elicited supposedly well meaning advice from a fellow shopper or cold calculating stares that brought tears to my ears. I learned early on never, ever to be judgmental about those two year olds having a coronary that they could not have a candy bar, because, I knew the parent is preferring that child was also not having that coronary, and would really like to not be standing in the grocery line.
After years of those ungracious stares , what could be pages of free advice, and many trips leaving a store with tears running down my cheeks, thinking if only they knew...maybe if I put a sign on Peter they would understand, I finally "got over it" It was a defining, cathartic moment in my life which I, Sara and Mike will never forget. They also suffered from these moments, and hopefully, through them have learned.
One day Sara really needed to go to the library. Yes, I did not take my children to the library, felt the guilt because every good mother takes her kids to the library, but now with the addition of Peter, library trips would be considered catastrophic. However, Sara had an assignment due, and the library was the only solution to meeting that assignment. So off we went, all three kids in tow, to the library.
Once we arrived, Peter squirmed and tried to get down throughout the entire experience, and I was doing well with Houdini until Sara desperately needed my help at the card catalog.....remember those now archaic mechanisms used to find books? With doubt in my mind, I put Peter down and thought I had him pinned between my legs and the table. I do not know how long it takes for an individual to leave the card catalog table and run to the doors that say DO NOT OPEN, EMERGENCY EXIT, but I think it was seconds~ Do you know how loud a fire siren is in the library....LOUD! And yes, eventually everyone knew who was the culprit and worse yet, the culprit's mother, but something new had taken over my body....I did not care that everyone was staring at me, I laughed, the horrified look on Sara and Mike's face left, and they laughed. Why it was just Peter, being Peter, and you know how he loves doors...and I was doing the best I could under the circumstance. So I laughed, Sara and Mike laughed, the library lady laughed and all was good. Of course we apologized and explained, but this time the tears were those happy tears that come from laughing so hard.
And so, from that day on, the tears were less and the laughter more. Luckily, because that was only the tip of the iceberg in regards to "Peter Events" and teary eyes from laughter was the best answer.

Regrouping

In an effort to become more organized about blogging, and considering I may be called a blogging virgin....if there is such a thing...I decided I needed time to get organized, seek out advice, and learn more about my blog. So, I did my usual advice seeking in regards to technology and called Sara and Mike. Thank goodness for Generation X or is that Y. Doesn't really matter what letter they are as long as they have the information. Of course, I thought I could figure out the scanning photos part, after all you just push the button. I read the book that comes with the printer and convinced myself, I could do this! After two hours, luckily Mike walked in the door and within literally 15 seconds he passed along the information I was so desperately trying to find over the past hours. Okay, so where is the fairness in that? A master's degree and I cannot figure this out? The good news...I now can scan!!
With that new knowledge tucked neatly in my brain (hopefully) I decided to go through photo albums and old pictures to find ones that might fit a blog. You know, those old boxes of pictures you have in your basement that you are going to put in an album ...I think it is a New Year's resolution that I have every year. I dusted off the box, sat down, and sifted through countless pictures. Going through these pictures I realized that this tiny pint sized child, who we carried around like a toddler until he was five or six, was an extremely happy child. Why, he was just living his life as Peter, not knowing he really did not see above or below, not realizing he was falling behind, no, Peter was just slowly making his way in the world with a big smile on his face. I also realized that his sister Sara seemed to be always carrying him around like a sack of potatoes and his brother Mike was loving his little brother. Looking at all those family members and friends who were there to help and treat him as just one of us, was heart warming and quite fulfilling. I was also reminded of all his great teachers, OT's, PT's, Speech Therapists. Teaching Assitants that contributed to his growth. Great pictures and fond memories.
So, if you have a few hours, even if you do not, take some time, make a fire, grab a glass of wine, scatter those albums and pictures around you and enjoy!! It's cheap, it's entertaining....yep..free high!

A Free High

So today, I decided to zoom into the present as yesterday, I got a "free" high from Peter. I picked up Peter, who now lives in a group home...more on that later, to go to his favorite church. Peter was brought up in a very traditional quiet, did I say quiet, yes quiet which Peter had this need to change, church. Every Sunday Peter went to church and we sang the same songs, and said the same words, and Peter just never could catch on, even though I did the finger pointing thing at the words, and sang loudly into his ear...just did not get it. Instead he seem to have a need to go to the bathroom, fall asleep, and when it was all over, be the first one out so he could slam the large heavy oak door very loudly, ensuring that everyone in church knew he had left. Needless to say, we sat in the very back, and I tried extremely hard to leave during a loud song or as soon as I could. Really, church became a stressful event until one day a colleague told me about her church where the music was contemporary and, listen to this, you could even drink coffee and eat during church. Now how could that be, I asked. So we checked it out and Peter fell in love with church. The difference was amazing! He could sing the songs, clap, be noisy, and now he did not stand out, he was just part of the group.
So, on Sundays, Peter and I and anyone else that wishes go to church, show up, and we sing, we clap, we raise our hands, and we fill really good when we are done. Although the worship experience is quite fulfilling in itself, watching Peter is the "freebie" that no matter how you start the day, you cannot leave without feeling like something good has taken place. It is that feeling that only Peter seems to give that "what is really important in life feeling" that what are my priority feeling, that warm fuzzy, life is good and God is great feeling. As his sister Sara will say, "There is nothing like going to church with Peter". And she is right....a free high!
Yesterday, I have to admit, I was not the best example for a positive, caring, happy, thankful person. But, after one hour, there is was, I got it back, thanks to Peter and God, of course. If I could invite you all to see, I am thinking you would feel the same!

Counting my Blessings

When one spends time in a Children's Hospital, one realizes how fortunate they are. If you have never had the opportunity to spend sometime in a Children's Hospital, a Specialty hospital, or a clinic, talk a walk, look around. If you want to feel sorry for yourself, check out the environment, the ill children, cancer, missing pieces, so many things. I learned early on, that just about when I really wanted to feel bad about not having a "normal" child, I just needed to look around and count my blessings. Just when you think you got it bad...there is someone else who has it much worse. So, it's that get a grip moment. A stop feeling sorry for yourself moment. A thank you God moment. Somehow, I think those same people were probably looking around saying the same thing, because every child is special. They may even been looking at me and saying the same thing...gosh, I am lucky I am not them. I am sure we have all learned from what we have been given and along with everyone else, realize, we are the lucky ones.

The Pincher Grasp

I have to admit I never gave the Pincer grasp much respect. The grasp defined "as the grasping an object between the thumb and forefinger. The ability to perform this task is a milestone of fine motor development in infants, usually occurring from 9 to 12 months of age" . Did you know that a pincer grasp is a major developmental stage in your child's life?
Walking, talking all very important in the development of your infant, but the pincer grasp? I thought every child had the ability to pick up those Cheerio's, wasn't that a part of growing up? Did it just happen? Peter never had, never developed, and still does not have a pincer grasp. He did manage the Cheerio thing, but it was more like mauling a group of Cheerios on the high chair table and than somehow smashing them into his month. When I realized the importance of the grasp and the lack of Peter's ability to develop one, I remember looking at amazement at other babies grabbing the Cheerios,thinking how fortunate you are (the parent) that your child can pick up Cheerios...such a small task, one which is easily goes unnoticed, yet such a big event! I was envious of those babies with their tiny little hands, pincing up the Cheerios.
My point today,if you are having a bad day,if your child is a bit on the cranky side, teenage son driving you nuts.....think about..he or she most likely gracely ate the cheerios at a young age....rejoice!! What a gift! It's the little things in life after all....

Floppy Baby

Yes, Floppy Baby. That is the name of this blog, funny sounding, but true. Peter was a very floppy baby. He was 8 pounds and 9 0ounces, so a nice size, but oh so floppy. He did not sit up for the longest time. Whenever, he had his monthly pictures, you know the pictures you do for your kids. The ones that you do for the first one, so now, you do it for the second and for heaven's sake, need to do it for the third, because we must be fair. Actually, by the third child, Peter was more on the every other month plan. At those pictures, we would prop and hide and hold him up. And there he sat, a year old, with this happy grin, only seconds away from flopping over. Peter eventually sat up, but when he did, he would often lay his head of the high chair, as if it was just too much work to hold it up. He smiled and did his "OT" exercises with his head down. At eighteen months he was attending Early Childhood classes and would spend and hour or so working on strengthening and playing. Shortly before the age of two, Peter began to walk. Looking back, I never thought he would not sit, or walk, or even talk. Talking, however, is for another day. I guess I just thought Peter would be who he was, but always thought he would continue to grow. I really do not think I thought much beyond the present. I did not play the what if game, but more the it is what is game. Although, in the early stages, I still felt there would be a cure or Peter would just snap out of it. I guess you could define that as hope. But that hope, and the idea of taking one day at a time worked for me. And with each baby step, really little baby steps, Peter made progress. He grew stronger, could hold up that head, and eventually his whole body. Now how cool was that!

Eating

Eating...now this is something that logically follows mantras and guilt. But if you have a child, and that child or infant at the time will not eat, it is a bit unnerving. Peter could sleep for hours on end, so needed to be woken to be fed. Once awake, he would have preferred to sleep, so all those little tricks, letting his feet get cold, tickling his feet, just did not work. When breast feeding did not work we tried all the formulas known to mankind and he still did not want to eat. You would think feeding should be natural, after all who doesn't want to eat. My older two children, couldn't eat enough and now here was there brother who had absolutely no interest in food. So, we plodded along, and Peter's weight fell off the growth charts. That's how he ended up at the children's hospital. Everyone scratched their head, but he just ate the minimal amount. To this day, Peter only eats until he gets full (sort wish I had that gift) and stands only 5'3" and weighs 112 pounds. The good is he still wears children's clothing and I can still order the Land's Ends pants with elastic as he is not into buttoning which he recently demonstrated at his cousin's wedding when he became hot during the ceremony and decided to do some Herculean thing by ripping off his dress shirt only to reveal the t-shirt he had put on which said "This is not my costume".. Who dressed him for the wedding anyway?
So, back to eating...by the time Peter could chew, we had discovered McDonald Fries. Many days were spent around the city while Peter ate a bag of Fries. He ate, I drove. He gained some weight...everyone was happy. Life was good!
Until recently, Peter's diet consisted of about five items: pancakes, macaroni and cheese, grilled cheese, French Fries, Peanut butter sandwiches. It was the "no thought' diet when it came to feeding Peter. About one month while eating with his sister and me, I placed his usual fare in front of him and we ate our chili. Peter told us that he ate chili. We looked at him and said "No way" , he proved it, we called the neighbors and anyone else interested as this was a very big event at our house. That is one of Peter's gifts, the little things that make you get all excited and want to celebrate. Who would have thought...chili!

Guilt

When one is blessed with a child with specials needs, the blessings is not so clear in the beginning. Guilt becomes a big issue, as one thinks if she had not had that drink before she knew she was pregnant, or ate that food, or was exposed to whatever...it really does not matter, as guilt raises it ugly head over your mind and tells you it must have been something you did. And when guilt is not there to bug you, then there are those individuals who must have been born to some evil person, who add to the guilt. Such as a local pediatrician who told me his version of why Peter was not growing. That would be I had three children, I probably really did not want a third child, and I play tennis. Obviously, he failed the class in Social Interaction 101 in Med School. There is some justice as this doctor is no longer practicing pediatrics and I have forgiven him for his lack of insight or diarrhea of the month. The guilt was also fostered by the team of doctors at a local Children's Hospital that could not find their way into Peter's room after he was tagged as "Failure to Thrive". Did you know that "Failure to Thrive" in the 80"s meant "bad mother who cannot feed her kid". I could hear the residence standing outside the door, one after one, excuing themselfs from this case. We sat, no one came, I begged, no one came. Like the open window I mentioned earlier, at discharge in walks a nurse who was walking in my shoes, and sent Peter and I in the right direction, down the road to Madison and the Waismann Center. Her name was Jane, and I will never forget her, for if it wasn't for her, the week stay at the hospital would have been for naught and the guilt factor would have become unbearable. So thank you Jane...you were like an angel that day. I guess that is why I have a special place in my heart for nurses. Afterall, nurses, are the ones who really know!
So, life and guilt continued for quite awhile until a test confirmed that Peter had some funky genetic disorder and was placed in a study group of children like him. Guilt, I carried it with me for a long time. The guilt subsided, as the acceptance of this special gift tookover. Peter was not something I created by a mistake, but God created as a gift. Just took me awhile to figure it out.

More on Philosophies-Get Real!

After writing this morning about my mantras that provide a framework for dealing with life and Peter, I than realized I forgot Pity Parties. How I could forget Pity Parties, I will not know! Pity Parties are great and definitely essential in maintaining one's sanity. What is so great about Pity Parties is that you are in charge. You can invite whomever you would like. I always invite no one as I am my own entertainment at my Pity Party, so really I do not need anyone else. I can either schedule my own Pity Party or at times, I have had a spontaneous, I need a Pity Party now moment. I personally like to have my party in a quiet area, a bedroom, the shower. The shower works great as the tears blend in with the water, and cold water helps with the swollen eyes. Night time also works, I like the dark, and then you have the entire night to get rid of the redness. Just to let you know, there is nothing like a good Pity Party. A good "It's not fair" Why me", " I cannot handle this" party. Yes, I know I previously said I used my mantras, but let's face it, there are times that life just stinks, so the best way to deal is to plan an all out Pity Party. Definitely a soul cleanser. I highly recommend it when you feel the need.
As I tell you my Peter stories, I know there were a few of these parties thrown after the fact. Not just a few, depending on the day, there were probably many..all worth the effort of throwing the party and cleansing the soul.

Philosophies

One of my Mantras that I keep in my back pocket is "God will only give you what you can handle" and trust me, I have had many discussions with God about my limit. Obviously, I am still here, better off with the various...... what is the word..."Loads I was given...Gifts I was given", and He does seem to know, although I know a day will come and I will again have that discussion..."Isn't enough, enough"? Actually, I can now look back and say all the difficult times have made me a better and stronger person, all part of life's puzzle which gives meaning.
During the early years of my life with Peter, I often wondered "why me"? Yes, I looked around at all my friends and not one of them had a child with special needs. Why, they all got healthy kids. Just didn't seem fair. I have also come to the realization that "Life is not fair" and if for one minute I think it is...wrong. There are families that appear to have it amazingly good and those that do not. And that is just "how it is." So another one of my life's motto's...Each person in life is given "things" or a plan or whatever, and in life, one is to use what is given and do the best the person can do. So, using an bad cliche...I am to deal with my plate..full, not so full, and in the end, it is all about how I ate my plate. Does that make sense? To me, God says "Here is your plate or life plan, now do the best you can".
It seems I am on a mantra theme today, so here is the other motto I like to keep in my back pocket. When God closes a door, he opens a window. Again, discussion with God sounded like this. "Please do not close that door, Where is the window...when will the window be open"? There has always been a window, maybe not my window or the window I would have picked, but there is a window. Sometimes that window is just staring you in the face, and other times that window is hidden and takes a bit more searching. But it is there, maybe not open as soon as I want it open, but it opens, sometimes quietly, and sometimes the wind just blows in and smacks you in the face. I know, that no matter how dark a situation can seem, there is a window somewhere in that tunnel of darkness, that will open. I think the other word for that window is hope, and without hope, life could be quite scary.
So these are my mantras, my framework, that has given me direction in life that has helped me walk the walk with my life with Peter Labanowsky. Hope, trust, and most of all, a very good sense of humor and the realization that most everything can be fixed. If I may borrow my friend's Betsy's saying "Was anyone hurt? Did anyone die? Than it is no big deal and life goes on!" And believe, me I used that one quite abit and than called the repairman.
So onto today and what life will bring!

The Beginning

Almost did not find my way back. That is scary...make a blog...can't find the blog. But I am here, whew!
So, beginning or present....beginning. Just seems to make sense to start from the beginning and how my life with Peter Labanowsky began. So you see, Peter is the third child, the uncomplicated pregnancy, no eclampsia, no placenta previa, perfect pregnancy. And at 6 AM in the morning, Peter literally slid into the world, quietly. And there he was, declared a perfectly normal little boy. Which of course he is, because who defines normal anyway. Only to discover that his eyes were not normal, they look like cat's eyes. Only to be told by a friend who is an pediatric ophthalmologist that he would most likely be blind as she could not find an optic nerve. So, to this day, I remember driving home in that Cranberry Town and Country, tears streaming down my face, vowing that Peter would lead a normal life just like Mike Riordan. Mike is the son of Dan and Sue Riordan who had cancer as a child, but lived until he was 22 years old with complications from the Radiation Therapy. He lived a very full life, even going to college until the time of his death. You could say, Mike got his bang for his buck out of life. So, Mike was going to be our role model, no matter what the obstacle....normal, and that was that.
Months later, we discovered that Peter actually could see...as if he was looking through a periscope, but he can see and has learned to compensate well...you would never know. And the ophthalmologists still can't find that optic nerve!! Makes you wonder!
However, before that time, Peter ran into other problems. He just couldn't grow and he was a bit floppy, and he did not progress. So the beginning of doctor's visits to clinic, and hospitals, and children's hopsitals and special clinics began. And Peter continued not to grow, the medical professional scratched their heads, and said something about a defective gene in the Respiratory chain of his muscle tissue. Nothing medicine could fix.
After about fours years of searching and trying to find an answer, I decided it was time. I thought...This is Peter, there are no drugs that will cure, there will be help for progress, and I was finished. No more trips to Madison or Milwaukee, just the usual kid's stuff. So, after fours years, I probably came to the acceptance and realization that Peter was special....only I did not know at that time how really special he was!

My Life with Peter Labanowsky

Finally, I am here. Years have past and friends have said....you need to write a book. And I smile and agree, yes, I need to write a book. But time has been an issue, and really, getting started has been the bigger issue. Three cassette players later, and several computers which kept my previously started documents regarding my life with Peter, "the book" remains just a thought, a smile, of what should be. But now, I admit, after just watching the movie "Julia and Julie", I thought, I could handle that. I could do a blog, I can write something everyday. I think this can work. I will try and stay committed, I will try and write once a day, and I will tell the story. The story that began almost 22 years ago. A story that has changed my life. A story that brought tears..that would be many tears , but more than tears, joy, and the realization about what is really important in life. So, today, I begin, with a basic blog site (if that is what it is called) and a opportunity to tell about the life I have experienced with my son, Peter. So, tonight, I will decided, do I start from the beginning or do I start from the present and the half of gallon of Crisco which lies in my sink. I will think, maybe both ends work, some present, some not so present. The meaning is the same as there has never been a dull moment in my life with Peter Labanowsky