Friends... Real or superficial?

I've had a lot of unique experiences.  Unique... an interesting label for them.  Most people would probably label tragic, depressing, horrific... you can attach any negative word you would like.  For some reason most people I come in contact with, even those that I would call friends,  seem to think I have the most depressing life.  They've even told me to my face "I'm thankful I don't have your life,"  "I couldn't handle it," "Your so much stronger than I."  My response is always "You realize, I wasn't given a choice." Besides, I think there is a lot of great stuff in my life. I have the fortunate ability to look at the real gems in my life and I'm absolutely grateful for so many things.  I don't form attachments to things that other people do like their stuff.  Because in the grand scheme of things unless someone is dying, my day can't really be that bad.

I am who I am.  I am honest to a fault.  I am very loyal to my family and friends. I'm high strung (you probably would be too).  I lack some of the social politeness or tact that most people want.  I'm reserved.  I don't tell my life story to anyone I meet.  I have to know you well enough before I talk about F or my daughter, Cienna.  If I speak too soon about my life it overwhelms people.  THEY can't handle it.  Plus I get tired of the "your so strong," "I couldn't do it," blah, blah, blah.  Through the years I've learned that there is one constant in life and that is people disappoint or just flat out suck.

I can count on one hand how many friends have actually came through for me when I really needed one.  They tend to say that they want to help or  they offer, but when it comes down too it they are too busy or it was just empty, hallow words.  I can say the same about my mother, brother, and my sister. The other type of friends that I can attract are the ones who judge me for being who I am.  Yet they know nothing about what it's like to walk in my shoes for five minutes.  They just expect me to be like them.  When I'm not, I'm criticized and somehow it becomes some type of reflection on them.

Recently, a friend, or acquaintance would be more appropriate, contacted me.  Said she'd had a dream about me and wanted to see how I was doing.  She has criticized me on more than one occasion for being me.  I've been told the reason I lack a support network or friends is because I don't give people a chance or I don't put myself out there.  Yet, when I try to be myself she gets offended then she dumps on me.  Anyways, when I read her note I had to chuckle to myself and think "I hope I was behaving appropriately in her dream or at least doing something fun." Stupid me, remarked on this in my reply. I should have added an emoticon or something.  I also remarked on my isolation and life as a hermit.  Because I feel like I'm isolated and disconnected, like a hermit, it just happens that way trying to manage the lives of these two children I have.

She just wanted to let me know she cared and then accused me of being angry and holding a grudge in her next reply.  Really?  I'm being true to myself and your going to judge me.  I've finally just had it.  I had not intended to offend or seem negative.  I'm trying to make light of my faults in someone else's eyes.  So "be yourself, put yourself out there, give people an opportunity, blah, blah, blah" was really just a load of crap.  She's not the first to say that stuff to me and then criticize me.  She just does it in a way that is reminiscent of my mother.  I do not make it a habit to maintain relationships that make me feel bad about myself.  I don't need the baggage.  I have other things in my life to make me feel bad.   For example:

1. Worrying about who will take care of my son if I die before him. 
2. The many mornings I FEAR opening my son's door because he's breathing so quietly.  I think to myself as I approach his bed... "I'm not ready, please don't let this be my last moment."  I'm fearful that he may be dead. It's happened like that to other families. They find their special needs child died in their sleep. 
3. I miss my daughter who died from cancer at the age of 3.  I'm accustomed to it, but some days I just REALLY miss her.  It stings. It makes my heart literally ache  (or maybe that's a forty-something heart condition that I need to get check out).

I can take the disappointment of people in stride.  I can take having my feelings hurt.  I've lost something so precious to me, everything else pales in comparison and the odds are in my favor to lose another child before die.  So when it comes down to it I don't give a crap what most people think of me (there are some that I feel close too that I value dearly). But for most until you've suffered some major life or death struggle you really have no perception of what it's like to be me so don't judge me or criticize me for how I handle my situations.  I already KNOW I could do better... but some days I'm just hanging on.

I told that individual that our relationship was like the one I had with my mother.  That I can't catch a break with them. I fall short most of the time and I have to FILTER everything in such a way I compromise myself.  So my solution keep them at arms distance. It's so much safer, and give those robotic responses that make "them" comfortable.

This person then replied with "call me. You've misunderstood. I'm not the evil demon you think I am, blah, blah, blah..." My thoughts are does she care what I think about her.  I don't influence her daily life.  I don't enrich it. I'm a blip on her radar a notation in her prayers. She shouldn't give me so much power.  I don't care what she thinks of me.  Because in the grand scheme of life our relationship has absolutely no influence on my daily life.  It's not a relationship that enriches my life, brings me happiness and joy, it's just another empty, robotic, hollow friendship that has no depth to it.

If your someone I know reading this, please know that if you are my friend,  I don't expect you to understand my life or my perspective.  Let me know you noticed that I "fell of the earth" or "disappeared.  I need a good listener who isn't going to judge me on how I handle my life.  Remember I already know I fall short and can always do better.  Please don't criticize me for being who I am, just be sympathetic to my personality because it's different than yours.  I need a real friend who can do those things, not another superficial one.  I have more of those than I can count.

Rec Swimming vs. USA Swimming

I was just attacked by someone who I thought was my friend regarding the different opinion I have from hers regarding rec vs USA Swimming.  She's deeply committed and involved in the largest rec team in my area. My daughter swam rec with this team for two years.   It was a great experience and her introduction to swimming.  Unfortunately, my daughter was frustrated by not having the opportunity to swim all of the events offered her age group at meets due to the size of her group.  She started  a USA swim team one fall and never looked back at rec again. She really liked and enjoyed the opportunities she had to swim 50's and 100's in all strokes that was her deciding factor.

This friend was furious with me. She felt that when I stated that a team of  396 swimmers f must pose challenges for all swimmers to get equal opportunity to swim all of the events.  Apparently, that opinion means that I'm saying they can never good swimmers, not at all.  I'm of the opinion that at 396 swimmers it is logistically challenging, if not impossible, to accommodate every swimmer being able to have the opportunity to swim each event they have interest in at each swim meet.  That's a large team, period.  You can't accommodate everyone at that size.  I wasn't disrespecting the coaches, the team, or the swimmers.  This team is one of the more competitive rec teams in our area.  They have a great reputation... they are just one of the LARGEST rec teams in the area.  That is a fact.

I tried to explain that USA swimming has it's advantages for swimmers depending on their goals.  If they like to swim all events and distances they have the opportunity to have more independence and be more self driven with regard to their stroke and event interests and goals.  Year round USA swimming is not for all swimmers, nor is rec.

In speaking with this individual I tried to explain to her that I've come in contact with many families from both rec and USA. Each family I've spoken with, including my experiences, have many common points regarding the two programs. The programs are apples and oranges.  Communities need both.

Below is a list of things that I have observed and/or experienced from both programs.

Rec Swimming:

1. Offers multi-sport swimmers the opportunity of a shortened condensed season freeing up their time for other sports. 
2. Tends to lend itself to being a much better starting point for beginning swimmers.
3. Although competitive, it offers a much more relaxed environment environment which seems to be perceived as being "much more fun" than USA Swimming.
4. The coach drives the events chosen for the swimmers at meets. 
5. With the exception of championships, meets are a competition amongst two teams.
6. There is limited exposure to other distances for each stroke, for example 200 back is not a distance available to rec swimmers, 200 medley and free relays are depending on the age group.
7. Swim meets are typically every Saturday from the beginning of season until the end. 

USA Swimming

1. Swimmers are responsible for choosing their own individual swim events at meet.  Direction from their coaches influences their events chosen, but swimmers tend to gravitate towards the events they are strong in.  For example my daughter loves back stroke.  She will sign up for the 50, 100,  and the 200 distances.  
2. With most USA teams there tends to be a minimum swim skill requirement that needs to be met by each swimmer.  
3. Swimming is all year (yes even in the winter).
4. Swim meets are against many swim teams, not just one.  
5. Offers a more competitive level of swimming depending on each swimmer's individual skill and goals.  
6. Offers a short course season 25 yards and a long course season 50 meter.
7. Swim meets are on the average monthly, depending on team meets chosen, and are typically Friday through Sunday with the exception of higher level qualifying meets which can run from Thursday through Sunday. 

I'm not saying one program is better than the other.  Nor am I saying that rec cannot produce good, or great, swimmers.  An individual is a great swimmer,  because they love what they do, have good coaching, and a strong desire to be their best.

In the end I walked away from that conversation.  It saddened me deeply that this friend, with only a single swim experience to pull from, other than probably high school, so harshly judges a program she has no experience with other than the disgruntled rec families who went from rec to USA, back to rec.  She is of the opinion that USA sucks the fun out of swimming, but yet each year a handful of rec swimmers will leave and go to USA and never look back and be quite happy to do so.

When you can't speak...You can't tell

I came across this article yesterday on Yahoo.  I'm sure many of you did, if you didn't, the link is below.  

http://www.hnva.net/teacherbully/#caught

I'm wondering how many people were shocked and appalled? It saddens me to say that I was not shocked by one thing that was brought forward by this article and Mr. Chaifetz's video.

I have my own stories about the education system and the treatment of my son. Not all of my son's experiences in the special education system were positive.  If they were he wouldn't be finishing out his high school years at home with me.  If I'd more clearly understood the process maybe I would have done things differently or him. I don't mean the IEP process. I mean the process at which IEP team members work together to point the finger at my child for his failure to progress with their assigned goals. I will say that I didn't feel  that educating my son was of interest to many of the educators who participated on his IEP team.  I can count on one hand the number of individuals who actually believed in my son's potential and wanted him to be his best.  He had been in the education system from the time he was four years old until he was placed at home for health reasons at the age of fifteen.  

When my son was seven, the district assigned him a new health aid.  They reassigned the the aid that was with him by saying she really wasn't qualified to meet his health needs.  She was attentive to detail and she cared about my son.  The new aid talked negatively in front of my son about me and his health needs.  She continually remarked to our part-time nurse, who went to school with him, that I was over-protective and she didn't need help transferring  him.  She was overly confident and disregarded many, if not all of my concerns, regarding the care she provided my son during his school day. My internal bells and whistles begin going off.  Between the nurse's reports and my gut feeling I was beginning to worry.  Yet, I didn't have enough sense to call an IEP.  I was stupid.  

Fast forward to a phone call I get from the aide.  She said something happened to F's leg while she was moving him.  She thinks his hip popped out of socket (since his hips are dislocated).  I immediately go to the school I transfer him out of his chair.  He's shrieking in agony and pain.  I discover his left thigh is so swollen.  I contact the doctor's office.  They send me with him immediately to the ER.  Upon evaluation we are told his femur is FRACTURED!.  He's in so much pain.  They medicate him and send him to x-ray.  What I see on that x-ray makes me sick to my stomach.  Not only is his femur fractured it's broken into two pieces sitting side by side.  It was like a horror movie x-ray to me. The doctor's cannot set his femur due to the cerebral palsy.  They give us scripts for pain meds.  Tell us to move him every hour .  They give us a foam pad and a strap to stabilize his leg to cut down on it's movement.  He's at risk for blood clots, pneumonia, and skin break down.  My heart is broken, so is my husband's.  We are FURIOUS!!!

To this day I often think about this injury and what that was like for him.  Unable to speak to get the aide's attention.  Although, I have my doubts that she would have noticed anything that he said if he could speak. When I do think of it I feel sick and emotional. F and I do not talk about this accident.  I can't even imagine what this nightmare must have been like. His communication skills are improved enough that we could likely isolate what occurred, but I don't. Some things are just better being left unknown. 

In a nutshell, we never find out what really happened to F's leg.  We suspect that when the aide had him in a stander she forgot to unstrap either his knee or ankle, possibly both, and moved him alone.  Pulling on him with such force to remove him from the equipment that she snapped the largest bone in his body.  My son suffered physically and emotionally from this experience.  He's unable to speak and he was terrified of new nurses of returning to school, of being transferred to and from equipment.  It felt like an eternity for him to recover emotionally enough to return to his full-inclusion class.  

The aide still has her job.  My son encountered this aide above five years later in a summer program.  He showed up at school, heard her voice and become emotionally hysterical.  His current aide at the time called me to tell me he was crying uncontrollable and she'd never seen him this way.  She couldn't calm him down.  I went to pick him up walked in the class saw the aide who broke his leg and knew what he was upset about.  I called the supervisor and you know what her attitude was?  It's been long enough it's time for us to get over it.  REALLY?  Your going to tell a child who was severely injured and traumatized that it's been long enough get over it?  

And yet I continued to send my son to school year after year... until I got smart. I look back now on my son's emotional state through his last years in a special day class for the severely disabled.  He was withdrawn, depressed, emotional.  I can't help but wonder what happened in that classroom.  I will never know.  It's taken a good two years of being at home working with individuals who treat him with love, respect and dignity, as all human beings should be treated, for him to return to us.  

Current progress on the modified Atkins

Today F had a clinic to follow up on his progress on the modified Atkins diet for seizure control. Even though he's had some issues with seizures this past month his lab work is surprising.  His cholesterol was high when he was on his previous entered diet.  Since beginning the modified Atkins his cholesterol has dramatically lowered.  It has continued to come down each time F has been tested.  This is just so surprising to me.  A diet of fat and protein can lower your cholesterol and lower your seizures.

Although F has had some seizure breakthrough this past month, he's battled some health issues.  He's had two colds and the abscessed cyst.  He's been on antibiotics which contain carbs that throw off his diet.  What is completely surprising is that while he was his sickest with high fever he didn't have one seizure due to his high state of ketosis.  Fevers in the past and illness have typically given him such an increase in seizure activity that he would need additional medication to assist with suppressing them.  Although he's had seizures he hasn't had anymore than what he'd had prior to the diet and he has still had a seizure free day or two in the week.  I'm encouraged that once we get through allergy and asthma spring F will start to see more seizure free days.

Frustrated with Apria Healthcare

Apria provides F with his enteral and respiratory supplies.  For the most part we have had great success with the enteral department with Apria.  We've had a couple of problems with our last two orders being accurate, but that was easy to work with.  Respiratory department on the other hand is frustrating and aggravating.

When we initially went on service with Apria to provide our nebulizer and suction supplies they just randomly sent out an order of supplies.  There was no call to inquire about what items we actually needed or what brand or type.  They just packed and shipped an order to us.  We received way too many suction canisters.  F uses a vented yankauer and we were sent unvented.  I ended up donating a lot of the supplies to a doctor who does medical missions.

I try to be very frugal with our supplies.  Not because I HAVE to make them last longer, but because I feel so wasteful if I don't.  I don't think I need to replace a functioning suction canister weekly.  We are not above washing them if they are still good.  I think we make it a habit to throw it out quarterly or when we are just unable to clean it to our standards.  Suction tubing is another story.   So are the small pieces to the suction machine.  Those are changed not cleaned.  Our nebulizer kits are washed and sanitized and we have many of them we rotate through.  I feel as a society we are a wasteful bunch of consumers just for the sake of convenience.

I thought I had it worked out with a contact at Apria.  I sent them photos and item numbers of specific items and they located them for us.  That put us in the position to receive accurate orders with accurate quantities.  REcently I sent my contact an email requesting to place an order for respiratory and suction supplies.  He then forwards it to another individual.  Her reply to my email was that she had shipped our suction and nebulizer kits.  I didn't even tell her specifically what I needed.  I received 4 suction canister kits and other items that I did need.  One item that was new I merely had asked if they could provide.  It was an aerochamber with mask for an inhaler.  I think almost two weeks later I send her a message asking about it.  Her response was it's been shipped.

The order arrives and I receive ANOTHER four suction canister kits and four nebulizer masks with the aerochamber.  Now I have 8 suction canisters. We might actually use four maximum a year!  The nebulizer kit masks don't even fit the nebulizer kits that were sent.  Seriously, Apria, you send me supplies I can't even use AGAIN!  The aerochamber is crappy.  It doesn't fit and the mask falls off tossed in the trash.  What a waste of my insurance dollars.

When I sent the contact at Apria an email asking for an explanation regarding the addition of these unnecessary items.  Her response was she'll credit our account and requested me to send her a list of the items.  My response was if she'd had any care and concern about sending us the correct order in the first place she'd have asked for the list before she sent anything to our home.  I'm so aggravated with them.

This is a problem for me.  Apria is a large company.  From what I understand they are one of the largest in the US.  If they are this wasteful of my insurance dollars how wasteful are they of other's insurance dollars?  With the rising cost of health care and insurance premiums why is this company being so wasteful and careless with these medical supplies?

I should mention I wrote to their corporate office regarding this situation when I we first had this problem with the supplies last year.  You know I NEVER received a reply from them.  I doubt I would if I tried to address it this time.  Customer service is clearly not a priority for them, or at least in our situation and the billing issues are another story...

F said Bye... with his voice!

This young man is really piling on the vocal milestones lately.  A couple of weeks ago, while I was out running the dogs, he and Caroline were out for a walk.  He said "mom" really loud.  She looked up and saw me coming towards them.  I couldn't believe that he could see me from that distance since he is considered legally blind with no functional vision.  However, his vision impairment is the type that familiar is what he does see.  He walks the same path on their walks and he knows what I look like.  It's not unrealistic for him to have seen me.  But to say "mom" was so surprising.  Caroline said it was clear as day.

Today when Mary, his paraeducator, was leaving at the end of lessons he said "Bye" with his voice.  Not his Maestro, with his voice!  We are going on over a year of intense speech therapy and he is starting to say words!  Of course, I always miss  hearing them.  F hates to do anything that would impress me in front of others.  I'm good with that.  Let him have his independence.  He and I have been joined at the hip for way too many years with me hovering and doting on him... speaking for him.  I'm happy to be in the background.  I'm happy to hear others tell me about his progress.

You go son!  I'm cheering for you to be all that you can be, without my help!!

All this progress just stirs up so many conflicting emotions that I cannot even begin to speak about without welling up into tears.  Emotions such as elation, joy, pride, love, etc. Words come into mind such as deprived, cheated, denied, mislabeled, discrimination, unteachable, unmotivated, ... that stir other types of emotions.  I must over-ride those negative emotions with the positive ones and forget about the past.. but sometimes it just so hard not to think about those "what if's."

Being married is hard…Even harder with special needs child

Being married is hard. It's a life of compromise and acceptance. As couples grow together they change and grow as individuals from the life they experience together. There can be stresses of money, bills, parenting, schedules, work, just making time for one another, and the normal duties around the home. These "normal" marital circumstances have been the cause of more than one divorce.

From where I stand looking at the world around me, it seems that couples manage to keep things together and happy by investing in their relationship.  They have common ground in their likes and interests.  They plan for their families together.  They spend time together doing things away from their kids.  Many couples have date nights and weekends away.  I think it helps keep them close.

Our family has division.  It's a divide and conquer process.  There are no date nights.  There are no weekends away together.  There are nights that we divide our time between one child or another covering each child's activities.  There are weekends away with the one child who travels for trips or swim meets etc.  There is no bonding couple time.  There is no working on our relationship.  There is no us time.  There is division.

I'm not really sure how we've managed to coexist and keep our family intact.  I think that the two of us still enjoy each other's company, although we have grown into two very different people than who we were when we entered this relationship.  I'd say how we've grown, and who we've become, has a lot to do with how each of us has dealt with the circumstances  which we've been given.  I know normal married couples grow and change as they grow old and raise a family together and sometimes finding their common ground is challenging too,  this is not unique to my marriage.  What is unique to my marriage is all the unspoken stuff.

When I say unspoken stuff I mean, how we cope with the turmoil of emotions that surround the loss of our daughter and the challenges and struggles brought into our lives by our son's disabilities.  The emotional baggage and heartache that comes with those two things.  I think we've both made the best of it through the years, but there is so much that we don't speak about.  Each of us copes very differently based on our personalities and who we've grown into as adults.  They do not mesh for more than a moment hear or there.  At times, it's almost too painful to speak of.  Other times each of us are in two different places that don't mesh.  There is anger and resentment at times.  There's resolve to make the most of what we have.  There is just being plain grateful to have life and experiences.  But they rarely, if ever, come at the same time. That husband of mine is the only person who knows what I've lost along this journey and how painful it has been and the price each of us has paid.  There is no explanation necessary for random tears.  I think at times the random anger is mistaken as being directed at the other... but that can be due to what is mistaken for normal marital stress and discord.

It's like the continental divide in my home the majority of the time.  So much unsaid business... the good and the bad.  Yet it is our common ground.  Now throw all that other regular marriage baggage on top of it and you've got a recipe for disaster.  Yet here we are 25 years later still plugging along... but we've reached a place in that divide where the gap needs to close and it seems almost impossible.

Repetition and Data

I read something yesterday that reminded me of the wacky special education's way of torturing their hardest to serve students.  Repetition, I realize repetition is necessary.  I get that to teach children they must repeatedly do learning tasks until they have mastered it.  That's logical when your learning colors, ABC's, times tables, and various other learning concepts.  Okay, I'll agree to that.  What I don't agree with and what I believe is a form of torture, to these hardest to serve children. is making them repeat the same tasks over and over until the educator has been satisfied with "their" definition of assigned mastery.

For example, if you have a student who uses switches for access with their head like my son.  Lets say the switch is attached to a  lightbulb.  Please know this is an example, but I'll tell you that I'm sure they use something stupid in the lightbulb's place.  Let's make it interesting by making it a strand of colored lights.  So the teacher defines mastery as "student must hit switch 9 out of 10 times for x amount of time to activate pretty strand of colored lights."  Data will be collected on one of the teacher's cute little data sheets.  Let's say disabled student number one used the switch 3 times in a row and got the "wow" feeling by activating the colored lights 3 times.  Then said disabled student, who can't communicate, but is smart enough to realize that colored lights are pretty the first three times and then really stupid and boring after that.

This student can't say "hey this is stupid, give me something more interesting." Does the teacher ever think of that task as boring and dull... probably not, but the student doesn't ever show mastery because the student didn't complete the task 9 out of 10 times.  Day after day, this student has the switch hooked up and the lights plugged in and maybe on day 5 the student hits the switch 1 out of 10 trials, another day 0, or another day twice, because the task is boring and dull, but they keep putting the student in front of this task expecting him to "master" the task to show that this student understands switch access.  This is called repetition to mastery or whatever stupid term some lame educator came up with to label it.

With typical toddlers and preschoolers who are learning their colors we show them red.  They say "red" we move on to the next color.  We don't hold up red,  get out a tally sheet and make them tell us it's red 9 out of 10 times in a row.  You'd mix it up a bit to keep it interesting.  If you didn't would they continue to tell us it's red or would they be smart enough to think "if they keep asking me if this is red, maybe it's not really red? Do they want me to tell them a different color?" Or do they throw a tantrum and refuse to cooperate, because they are becoming frustrated and don't understand why you keep having them do the same thing over and over and over?  If you wouldn't treat a normal functioning child this way, why in the world would you treat a severely disabled child this way?

This was how my son was expected to learn by repeating these same demeaning tasks over and over and over.  No wonder he checked out the only way he could by falling asleep.  No one ever explained to him the purpose of these tasks.  If you do this it leads to this a communication device, the ability to say yes, an hour out of this classroom, etc. The educators instead labeled him as "unmotivated and unteachable." How fair is that?  No one asked him what he thought was motivating and interesting.  No one asked him if he thought this was boring.  No one ever gave two cents about what mattered to him.  What mattered to them was the ability to collect their data and show that he had mastery as defined by THEM.

Now lets talk about data. They use the data to justify the mastery of a goal or to modify it.  But how often did they the educators forget to collect their data or not ever collect it at all or they were inconstant.  Who suffers for this oversight or laziness?  Certainly not the educators.

Smart kids, physically disabled and the non-speaking or even the normal ones, learn quickly how to manipulate to get out of things they do not enjoy.  Many are successful at it by feigning sleep or suddenly needing to use the restroom, perhaps a tantrum, or just disruption of the lesson.  Smart kids find away to make things bearable.

Anger... it happens on occasion

F and I had a moment this week one we'd never had before.   One morning, F coughed significantly after his shower bringing up a lot of phlegm.  I didn't have suction or a toothette.  I told F I'd swipe his mouth out, but please try not to bite me.  I have never risked sticking my finger in his mouth, because he reflexively would bite on anything in his mouth.  On this day I cleared his mouth and he did not bite me, a first!  We talked about what it felt like compared to a toothbrush or toothette.  I even put his two fingers that could reach his mouth in.. and yes in the past he'd bite down on his own fingers.  It was a new thing for him and he was intrigued.

During my run yesterday, I was thinking about F and his new milestone.  I was thinking about how much he's  benefited from speech services.  Twice a week he's been working on speech for over a year now.  His face muscles have strengthened.  He rarely, if ever, drools anymore. He's making new sounds "mmm" and "nnn." He says "yeah" more when I talk with him.  How I wish in my heart of hearts that I had known what he needed.  That I had followed my intuition and worked harder to gain knowledge about the school system.  If I'd only payed more attention.  When I think of this I am overwhelmed with the huge regret that washes over me... I feel angry.

I'm angry that my son has missed out on a chunk of his life that he could have worked hard and made progress if he'd had access to what he needed.  Angry that I didn't know how to get him those services.  Angry that I believed the picture that was painted of his future and all that it WOULD NOT be.  Angry that I listened to someone, who had initials after their last name that I didn't have, and believed they knew better about my son than I.  Angry that he has to work harder than he might have had to work when he was younger.  Angry that perhaps he may have learned to speak a few words with intensive speech that could be understood by more individuals than just his family.  Angry at myself.

Then I have to let it all just wash away.  Otherwise it will eat at my heart and impede my ability to move forward and F deserves so much more than a bitter angry mother.

My son the hopeless romantic?

Yesterday, I learned something about F. Perhaps I've always known, but just didn't put a lot of stock into the thought.  My son is hopeless romantic I was informed by Mary, his new paraeducator.

"What?" I say.

Mary, "Yes, he is indeed.  I realized that when we read The Hunger Games together during the Peeta and Katniss parts."

A hopeless romantic... who knew.  So I ask F,  "Is that why you wanted The Time Traveler's Wife?"

He replied "yes." (I thought he was just being kind and polite to his sister sharing her interests.)

Me, "So that means that you really do want to see and read that horrible Twilight series... not because you want to make fun of how big Edward's head is, but because your a hopeless romantic???"

He replied, "yes" vocally and with his head turn.

He finds my shock and awe reaction completely funny. My head is spinning... really?  Twilight?  I think I'll throw up.  I am not a hopeless romantic.  The thought of listening to that entire Twilight series book/or movie is a tortuous thought. Of course, I would do it for him, but he knows it comes at a price of me making fun of it the whole time.  I'd do almost anything for this boy.  The first novel was BORING and the only entertaining part about the movie was comparing Edward's giant head to everyone else's.  I love a good tragedy with lots of suffering and agony, yet both of my children love a great love story.

This enlightening news brings me back our reality. My son will never marry or have children. He likes the pretty ladies.  He's always had a way with them.  Men and boys really have never had a lot to do with him with the exception of a few.  F is a guy through and through. He loves sports and loves anyone to sit and talk sports with him.  He loves a great action flick and just about anything with fighting and a weapon.  But this hopeless romantic piece tells me his heart may yearn for companionship in a way that he may never receive.  It saddens me so deeply.  I realize if I could enlarge his world and the people that he meets, perhaps I may be wrong... I just don't want to get our hopes up.  People can be so disappointing.

Why didn't I think of that?

F wanted to go to the movies to see The Hunger Games. Going to the movies is challenging for him. It's very stimulating and it's hard for him to sit for long periods of time. He doesn't wiggle or reposition himself in his chair and with gas bloat, he gets uncomfortable. Seeing an entire movie is challenging to say the least, but he REALLY wanted to see this movie.

So he and Caroline planned a trip to the movies. They read the Hunger Games series together two years ago. F reread them just before the movie so he could do his comparison. They took a friend along too. He was SUPER excited about going today.  So excited I'd thought he'd bust.

To make a long story short F didn't get to see the whole movie. He stayed as long as he could until he was so uncomfortable he was crying. He was so disappointed. So I took his tickets and drove to the theater.I spoke with the  the theater manager.  I explained the situation and that F hadn't been to the movies in over two years, because he was so disappointed from the last time he had to leave early.  It's discouraging to be left hanging and not know how it ends only to have to wait for the video to come out. helped me come up with a plan for F. We can call ahead to find out the exact running time of the movie with previews. F can decide how much of the movie he'd like to see, leave before he gets too physically uncomfortable, get a reentry movie ticket so he can come see the second have on another day. It's genius!

I came home gave F his tickets.  I explained to him how simple it would be for him to break a trip to the movies into two parts.  He doesn't have to be discouraged for feel like he's missing out on something by leaving a movie early.  He can always return to complete a movie on his terms.  He was very happy to know that he can go back and finish The Hunger Games.  He's also pleased to know that he doesn't have to have the goal of seeing an entire movie at the theater.  He doesn't have to feel pressured to sit through the whole thing and he can actually go on HIS terms.  I encouraged him and Caroline to start planning what they might like to see next month.

Seriously... why didn't I ever think of that?

Cienna's Prosthetic eye

While I was out running yesterday I began thinking about Cienna, specifically her prosthetic eye. I have many regrets when it comes to both Cienna and F, but many I've been able to work through.  But this one regret still nags at me all these years later... the prosthetic eye.

Cienna had her right eye removed before she was a month old.  She had to wait six to eight weeks before she could get a prosthesis.  Where her eye should be just looked pink.  She had this spacer in place.  It's purpose to put pressure on the orbit to promote bone growth.  The eye's growth is what causes the orbit to grow.  Then when she was completely healed she was to get a prosthetic eye.

I think the specialist is called an ocularists.  I should Google that to confirm, but I'd just like to finish this.  There was a local one in our area.  I think they worked primarily with adults.  Cienna was referred to them.  Coincidently, R's grandmother had a prosthetic eye.  She raved about their work.  However, when it came to Cienna they did a generic fit and the eye was always somewhat flat looking. It lacked the depth of other prosthetics.

Cienna would constantly rub her eye.  It created mucous and it would get irritated.  It teared a lot. She'd rub it and it would pop out.  I remember clearly the little suction plunger used to put it back in.  I can remember her saying "uh oh" when it either turned or popped out.  Even after it was resized to help promote bone growth,  it still wouldn't be quite right.

The year she became very ill.  I finally asked her doctor to refer us to their ocularist.  I wanted her to be molded and custom fitted.  The ocularist came while she was under anesthesia and molded her socket.  This helped him create a custom fit for the eye.  I'll never forget going to the appointment to have her final fitting.  The ocularist showed her the new eye.  Cienna was taken with it's beauty.  She remarked on it immediately.  If memory serves me well... she called it her "new pretty eye."  He removed the old eye and put in the new eye.  The fit was amazing.  Cienna could not believe how it felt.  The old eye became "the yucky old eye." The new eye perfectly matched her real eye and you could not tell the difference, or at least other people couldn't.

The old yucky eye, flat and lifeless.  It's just
as I remembered it to be.

How my heart broke that I didn't pursue that custom fit for her. She received this eye in October she would die the following February.  I still have that "old yucky eye" put away with some of her belongings.  To this day I still regret not doing this for her.  She never had mucous again.  She didn't rub it any longer.  It didn't tear excessively.  The mold made all the difference. The lessons we must learn in life are not always easy.

I'll have to find some old pictures of Cienna and post them... when I have the emotional strength.  It's very taxing on me emotionally to take that trip down memory lane.

19 is the Number of the Day ;)

I can't believe it!  My boy is celebrating his 19th birthday today.  Never in my wildest dreams did I ever think we may see this milestone.  I know that sounds terrible, but the ugly reality is that many kids with the health problems that he has (primarily the asthma and restricted lung capacity) survive into adulthood. I feel so lucky!

I can't even imagine how F feels.  I often wonder if he has ever thought about his own life span or mortality or if he has felt that he was close to dying.  I just have never had the courage to ask him.  I've asked him before if he's angry about his disabilities.  He has replied yes on some occasions and no on others.  I would imagine like me it's a mixed thing.  He only knows this life.  He cannot miss what he's never really had.  I know there was a time when he was VERY angry at the district for not providing him valuable services.  I know at times he gets frustrated because he can never catch up he's so behind and it's harder now as an adult to make progress.  I think he's done a fabulous job of making the best of everything he's been dealt.

Today I am grateful to say that I am blessed to have F in my life for these years.  Thankful, for all he has taught me.  My life is so much richer because of all that he brings to it.

Happy birthday, F!  I can't wait to celebrate your 20th next year.   I hope your day will be as special as you are.  I love you to the moon and back!