F's Fascination with the ocean

My boy has loved all things oceanic from as far back as I can remember.  He studied the blue whale extensively.  He's probably watched every National Geographic episode on the ocean.  He just loves everything about the sea from it's residents, to those who explore it, to the heart break of those who try to destroy it.  It ALL interests him. 

After a trip to a local aquarium store, F now wants  saltwater fish tank.  He wants a clown fish and an anemone, a starfish, a shrimp. His list goes on and on.  He's in love with the idea.  He could just sit and watch them for hours 

He's always enjoyed aquariums but it is at an all time high.  Upon further thinking about it... I finally realized that his fascination is more a tug of his heart strings and reminiscent of his sister, Cienna.  When she was alive the we took two family trips to the beach.  After she died we took some of her ashes to the ocean.  When he thinks of the ocean and all that it has it reminds him of her.  It brings him comfort and helps him remember those trips.  They are mixed with both happy and sadness.  F will never again go to the ocean.  We can't get him on the beach his wheelchair doesn't accommodate and he doesn't travel well due to his cp and dislocated hips.  A saltwater tank brings a bit of the ocean home.  I finally fully got what he's drawn to.  I get it completely.  I understand.  

Now I'm on a mission to find this boy a saltwater aquarium... hopefully one that is already established that we would need to move.  But where to put it in my house is a completely different story!  

Mission on!

How NOT to train for a marathon!

So my marathon is next Sunday.  I am filled with such self doubt.  I trained poorly.  I did all of the things I know NOT to do.  I didn't maintain my weekly mileage due to commitments to the kids and their schedules and that darn Algebra class I signed up for.  I didn't practice my nutrition and hydration. I didn't follow my training plan to the letter.  I didn't train early in the morning. The list goes on and on.

My long runs had too many days between them.  Some long runs had at least two weeks in between.  My longest runs the 18, and two 20's were a disaster.  My 18 was in rain almost the whole time.  Forgot my nutrition, hydration, and garmin.  That was maddening.  On my 20 it was a train wreck forgot to bring my nutrition and hydration again.  My last 20 I didn't even do due to my schedule. They took mental strength that I really had to pull from my toes since I feel like my mental strength and fortitude has been depleted this year (by my family). 

I trained alone.  That was a HUGE mistake.  I know a pack of people, some I used to call friends, training for this race... Yet I couldn't find a training partner.  I guess I should have looked at the obvious they didn't want to train with me.  I realize the hard core mental space you need to be in to be where they are and it's not me any more.  My family comes first every day... not saying their's doesn't it's just a different kind of first.  

So here I am unprepared and unmotivated to actually run this 26.2 mile race.  It's challenging to motivate yourself.  Having individuals behind you whether it's running next to you or telling you "you got this or you can do it" is so mentally helpful.  I have a choice I can suffer through 26.2 or I can run as far as I can until my body says no more and call it a day.  There will be no one at the finish line waiting for me so really other than my own self satisfaction, which lately is just doesn't feel like enough, what's the point.  There is also the example I set for my daughter that is mind over matter , make it happen even if it hurts, reach your goal, etc.  

Ugh... 26.2 seems overwhelming from where I sit.  

Another ruptured ear drum for F

After bringing C home from swim practice I noticed F was coughing.  It gradually began to increase through the evening.  I finally realized he's catching a cold.  Darn!  When I went in to wash his face there was blood on the washcloth.  It was coming from his ear.  So not only had he begun coughing somehow he'd soldiered on through some significant ear pressure and pain to tolerate a ruptured ear drum without so much as a grumble.

A trip to the doctor confirmed a significant rupture in the drum.  Poor F... I worry that scarring could inhibit his hearing.  It is his strongest sense.  This is the second for the year.  He had another in January.  He's such a trooper though.  He rarely complains.  He has such a remarkable attitude.  I just pray that this will heal quickly and we can help him prevent the ear pressure/rupture again.

So F gets a five day course of antibiotic and high dose prednisone burst.  I hope his tummy doesn't give him grief.  I also hope the prednisone burst doesn't bring super grumpiness and insomnia.  He's unbearable when he's under the influence of prednisone burst.

I'm hoping my boy recovers quickly from his illness so that he can enjoy all of the football the Thanksgiving holiday has to offer.

F is a first time voter!

F took so much pride in participating in the democratic process. I think he followed all topics and candidates far closer than I did. He is now glued to the news watching tentative results roll in. This was as exciting to him as the Giants winning the World Series and it lasted all day.

30 days of Gratitude

November is a month of thanks and gratitude.


Friday, November 30
Thankful for the break in the weather that we got at our swim meet in Woodland.  It's tough to stay warm when it's raining and windy.

Thursday, November 29
I am thankful to eek out a 6 mile run.  I needed 8... but the fact that I squeezed in this mileage among all of my mom duties makes me pretty lucky.

Wednesday, November 28
So incredibly thankful beyond words that F is feeling better the last couple of days.  His smile literally lights up my life!

Tuesday, November 27
I am very thankful for a great couples counseling session with R.  We are actually making progress.

Monday, November 26
Thankful that I am able to care for F when he is sick.

Sunday, November 25,
Thankful that F is coughing and wheezing less.  He's sick again on the heels of a cold he caught last Monday and this one packs more punch.  So far a trip to the ER has been avoided and for that I am SO incredibly grateful!

Saturday, November 24
Thankful that I was able to finally start C's infinity scarf after three attempts of getting my starting circle twisted.  I'm also thankful for the time she took to help me make patterns for some handmade items we are sewing for F.

Friday, November 23
Thankful to have NOT participated in Black Friday.  It contributes to greed and breaks down family traditions.

Thanksgiving Day, November 22
Thankful for the day I spent with my family.  We are so fortunate to have each other, a warm place to lay our heads, and food to fill our bellies.

November 21
So thankful and grateful that my kids are feeling better. It's a fever free day.  Glorious!

November 20
Today I am thankful that my official clipboard was found at the last swim meet.  Now I just have to arrange to get it back, but it's been found!! So thrilled about that.

November 19
I am thankful for my friend Rachel.  She ran 10 miles with me today.  I was due to run 12, but was feeling under the weather.  It was so great to have her company and her friendship.

November 18
Thankful to C for her great swims and wonderful support of my USAS starter training.  She stuck it out  an afternoon session so that I could put in an additional training session as a starter.

November 17
Thankful for the kind and helpful USA swim officials I worked with today.  They added humor and levity to a cold, windy, rainy day of starter training.

November 16
Thankful to have what felt like an easy Algebra midterm.  Especially, after I studied and reviewed the wrong unit for the test.

November 15
Thankful for my friend, Caroline and the time I had to meet her for lunch.

November 14
Thankful for my F's music therapy teacher who understands him through music.  She described him today as Frank Sinatra reincarnated. :)

November 13
Thankful for the family that carpools my daughter home from swim practice.

November 12
Thankful for an extra day with my girl due to the holiday.

November 11
Thankful for for the ability to check of many things on my to do list.

November 10
Thankful for a nice quiet Saturday at home with my family.

November 9
Thankful for a nice run at the trail.

November 8
I am thankful for the day I spent with F and his teacher Naomi yesterday.  What great fun we had creating terrariums together.

November 7
Today I am thankful the election is OVER!  No more political ads on tv or in my mailbox.  I can now answer the phone again without worrying about someone on the other end trying to convince me to vote a specific way.  The election ad campaign is the BIGGEST waste of money.  We will never know what those millions of dollars could have done for our country and it's people.

November 6
I am thankful for two things.  First, my right as a women to vote.  Second, my baby sister.  Today is her birthday.  Although we  no longer have a functioning relationship, I am grateful for all of my wonderful memories of our good times together.  Wishing her the most happy birthday possible.

November 5
I am thankful for Cienna and all that she brought into my life.

November 4
I am thankful for an entire day at home with my family.

November 3
I am thankful for Karen her friendship and her love for me.

November 2
I am thankful that I had the ability to push through an eight mile run when I didn't want to do anything.

November 1
I am thankful for the kindness extended to me by my husband.

November 5, 1997

Fifteen years ago this morning I boarded a plane at the local airport bound for CHLA with my daughter, Cienna.  This would be her first MRI appointment since the scan in spring that detected extra ocular retinoblastoma.  After a difficult few months of chemotherapy that would assault her small body followed by four grueling weeks of radiation, Cienna was beginning to have energy and strength.  The treatment had weakened her so much and turned her skin to such a pale color.  She had curly blond hair and was so excited about it. I felt hopeful and optimistic when we boarded that plane together.  We left behind R and F for the trip.

We arrived at CHLA and  headed to radiology and went through the process of getting the MRI completed. In some ways these trips were like seeing old friends.  After spending three years in and out of this hospital you build relationships.  I didn't have to wait long for the results.  I was on friendly terms with the radiologist.  While Cienna recovered from sedation with the nurses, the radiologist hung the scans and looked at them with me right there on the spot.  What would come out of his mouth rocked me to my core.  I can still here his words echoing through my mind.  "Her eye looks great.  What concerns me is all of this..." as he points to spots on her brain.  It took me a minute to realize what he was telling me.  More was said to me and then he immediately left to go call the oncologist with the results. I left to make a phone call.

I can remember making my long distance call from a pay phone in the hospital's waiting area to give R the results.  I had to call him at work.  First, question for him was the same "How is her eye?" only to have me tell him "The eye looks great, but there is a brain tumor." This was the worst phone call I have ever made.

Cienna awoke from sedation.  As I looked at her she had no symptoms.  She felt great.  The process of her metastatic retinoblastoma would be explained to me in more detail later.  I could not grasp how she was bouncing back and was just handed a death sentence the two did not match.  Words that would later echo in my ears would be the oncologist telling me at the rate of presentation he estimates "three months." I could not imagine, nor could I actually grasp what was said to me. The doctor would be correct... she would die at home February 5th, 1998.  November 5th was simply the beginning of the end.  Cienna's clock was literally ticking down and every minute counted.

Today's "to do" list includes a 20 mile run... UGH!

Today's plan is to get the girl to school and head to the boring, and monotonous bike trail to run 20 miles.  This is part of my training plan for the upcoming marathon on December 2nd.  I've been training alone for this marathon since the mileage exceeds a distance  my dog's can run with me.  The miles are long tedious and boring.  Mentally I'm trying to get myself out of this marathon. When I signed up earlier in the year for the race I'd had a group of what I thought were friends training for it.  Friends come and go with the ebb and flow of your life. It wasn't in my plan to train alone.  It's been a true test of mental toughness for sure.

I'll update the iPhone for the mileage. I'll put on my two favorite podcasts "Stuff You Should Know" and "This American Life."   I'll get to learn interesting things and be entertained by Josh and Chuck's random topics.  Ira Glass is sure to have some very interesting shows to entertain me as well.  I love the stories about people's experiences.  They will help tick away the miles until my feet and legs hurt and I just want to quit.  Then I'll switch to some upbeat music and literally WILL myself to finish.  

The salmon are running perhaps I'll catch a glimpse of them doing their thing along the river.  The fisherman have been out in full force, along with the vultures.  The deer and squirrels are preparing for winter and you can tell.  Although, in this part of California we don't really have winter. 

Hopefully, today will help me clear my head and mull my life's problems over.  Reflect on my memories of my sweet girl and think about what unknowns lie ahead.  That's the best part of running, it helps you work through what's really bugging you.  Lately the biggest decision on my personal plate is whether or not to consider speaking to my doctor about medication.  I'm a highly anxious person and I'm thinking my anxiety is out of control.  Or perhaps I'm just depressed.  So many people tell me that I am; therefore, I must be... right?  

I'm off to start my busy day... with lackluster enthusiasm.  

Encephalitis does a Brain Harm

My son was born in April 1993. I had a normal pregnancy until the end when he did a u-turn and got himself stuck in the breech position. This resulted in a Caesarian delivery. He was so tangled up in his cord and his head was stuck under my diaphragm. The doctors wrestles him out and my husband and I were the proud parents of a son. what and adventure this boy would take us on.

Seventeen days after our son's birth he would be hospitalized for viral encephalitis. He would spend three weeks at the local children's hospital for treatment. The prognosis was Grim. I can still remember the pediatrician I had chosen calling us by phone at the nurses station to break the horrible news to us.

A neurologist came to speak with us. He was matter of fact and pretty realistic bout how things would go for our son during his stay. To have him tell us he was likely to be disabled from the illness was a blow. But like many parents you don't want to believe that about your child.

F developed seizures during that first night. He nearly coded. They started him on anticonvulsants along with an antiviral drug. He had a feeding tube places through his nose to his stomach because he'd stopped eating. As the antiviral drugs began to help he became more and more stable.

He was released from that hospital ray on Mother's day. What a gift that was. We took F home. When I think about how naive we were then. That first illness didn't really prepare us for the road ahead. There would be many more challenges to come.

Starting with the crying…all that crying! It pierced my heart and my ears! I used to call the neurologist be cry that my son NEVER slept. If he did sleep he'd startle himself awake. Little did we know that was a seizure called infantile spasms. This was an extremely challenging summer. After starting steroid injections for the seizures and changing medications the crying improved some.

F had sensory issues and back then no one really addressed them with us.  We'd notice certain sounds and environments were challenging for and overwhelming for him.  Looking back he needed a sensory diet to help his nervous system.  We would learn about sensory diet many years later have F suffers a femur fracture and do to being unable to get out of bed, pain medications, and probably the whole traumatic experience he began showing symptoms similar to those when he was younger.  An occupational therapist would explain to us it was sensory overload and taught us the sensory diet.  It really worked to.

F prior to his first birthday will also have surgery for  gastrostomy (g-tube) placement, nissen fundoplication, and pyloroplasty.  All to help with feeding and pneumonia related reflux.  That was a tough procedure, but we got through it.  This first year was hard and challenging, but when I look back at it I'd say it was hard and challenging because you get placed on a fast learning curve and your just naive new parents doing the best you can with a unique child so unique you meet only one family who has one similar in ability, lack of.

In a nutshell, looking back that first neurologist, who I still call my friend, painted the bleakest picture possible for F's future.  He turned out to be absolutely correct about most things.  Life is challenging for F.  He is SEVERELY disabled.  He is however "nerd" smart as his paraeducator puts it.  He is an untapped resource and if he had expressive language that could pull some of that amazing knowledge out of his head who knows what could be possible.  You just never know what life will give any individual.  You just never know what life will give any of us.  F is an inspiration and I can learn daily from his example in patience, forgiveness, and compassion.  I sure love that kid and would trade most of our experiences together, not even that traumatic first year.

January's Half-marathon

I needed a running goal since I've been such a slacker when it comes to my running and fitness. I signed up for the virtual Nike+ Women's Half-Marathon on 1/15/12. Which meant I'd train and run the half using my Nike+ GPS running app on my phone.

During the training process I used the app. I liked it. It's fairly accurate. I'd say my only complaint is when I wear gloves on cold days it's hard to start and stop. It would be nice if it had an auto stop feature like my Garmin. I run with my dogs and they require more water stops than I.

Race day came. The dogs and I headed to the American river bike trail. We ran our half together. I knew that Rocky (the standard poodle) would easily pull off the distance, but wondered about  little Lilly (puggle, pug/beagle mix). They both did amazing. With water and potty stops we did a 2:10 and change half-marathon. These dogs have been great running partners and I appreciate their company. I've included a photo of them. They didn't cooperate as I would have liked them too. One thing is for sure they don't look like they just went 13.2 miles with me.

My reward from Nike was a bracelet made by Hurley. It came in the mail past week. I'm going to admit I was slightly disappointed. I'm not sure if it's because I'm not a fan of the colors or because I can't really figure out how to put it on. I'm wishing it had come with instructions.

My best reward is automatic entrance into the 2012 Nike Women's Half-Marathon in October with Team Victorious.


written in January 2012

Did I ever tell you how much I HATE suprises?

So my dear friend, who is like a sister to me, is trying to surprise me today.  I love that she wants to do something nice for me, I really, really do.  There's just one thing she won't tell me what we are supposed to be doing and I HATE surprises.  My experiences have reinforced over and over again that my surprises are rarely, if ever, good ones; therefore, I hate them.  They make me uneasy and anxious.

Surprise example number 1.  R tries to throw me a surprise party for my birthday.  F ends up sick and hospitalized with pneumonia.  Surprise example number two plan a vacation and your husband gets pink slipped at his county job (no vacation!).  My list could go on and on.

She wants me to dress comfortably and bring comfortable shoes. You know... this is defined differently by each of us.  Not only that I'm going to be gone ALL day on my only Saturday that I had to spend most of the day at home.  Part of the problem is I'm rarely home.  I can't get my head above water on laundry, housework, blogging, etc. because I'm only home for a few hours and I can't get anything done that requires a good chunk of time.

What I'd like today is a number of things.  Wash my dog so I can cut his hair tomorrow (standard poodle).  Go to the library.  Get in a 10 minute fat burning workout.  Do laundry.  Change the sheets.  Get my math worksheet done.  All those things that have just piled up.  Maybe even watch a movie with the family before I go get my hair done.

I need more hours in my day!

Just trying to keep my head above water...

I know I keep abandoning this blog.  I don't mean to.  Thank you, Lee, for reminding me I have one and for your kind words.  Your words were honestly an answered prayer that day.

I'd like to catch everyone up on all that's going on, but honestly I'm simply just overwhelmed by my life.  I know many people in my life think I'm strong and I can handle everything, but I've kind of had my limit recently.   I'm not super mom.  My marriage is crumbling and I'm coming up on the 15th anniversary of Cienna's terminal diagnosis, her 18th birthday, and the 15th anniversary of her death are around the corner.  Right now I'm just telling myself "fake it until you make it" when really I'd like to curl up in a ball in my warm bed and just cry.  I'm also wondering what the hell I was thinking trying to train for a marathon that is December 2.  I've got a 20 mile training run on my to do list for Monday and I barely have the energy to function.  Really... what WAS I thinking?

I'm just praying for God to ease my sad heart and help me through this challenging time.  Grief sucks!  I miss my daughter and all the memories and milestones we should have had together.

Just trying to survive the day.

F is doing great.  He registered to vote and is super excited about the election.  I'll try to write about that later.  I couldn't be more proud of him.

I abandoned my blog... AGAIN!

Once again I have abandoned my blog.  So much has happened since my last posting. Just a quick run down of what's been going on.  My daughter started middle school. F's routine has gone into full swing with speech, physical therapy, music therapy, and direct instruction.  I seriously contemplated filing for divorce (even downloaded the court documents to do so). We said goodbye to our beloved nurse, Caroline.  She was with us over two years.  Our family still hasn't recovered from the latter. And let's not forget, I got a diagnosis for F regarding the cysts that keep getting infected by his ears and I started taking a college Algebra class and started marathon training (I ran 14 miles on Monday).  Whew!  Let me catch my breath.

Now I must sign off and lay my head down.  I'm pooped and the day begins at 5:30 am.  I've shorted myself sleep once again!

Prednisone and Asthma Update

Yesterday F had a follow-up visit with the pediatric pulmonologist.  We were there to discuss the use of the prednisone.  Prior to the appointment I had asked F if he felt that weaning off the prednisone had a negative impact on his breathing?  He communicated yes to me.  The outcome of our discussion was that it would be in his best interest to begin taking the every other day dose again.

The doctor came in and said that he had reviewed all of F's records and happenings over the last seventeen months (that's how long it had been since F had been to clinic).  We explained F's decision to wean down on the prednisone after being told by a handful of doctor's that the secondary skin infections had to do with immune suppression to which the this doctor replied "Do you have urinary tract infections? Do you have other infections sinus, ear, respiratory? Is your blood sugar out of control?" All questions were answered with a no. Although F has had his fair share of infections this year, he did not have an excessive amount of infections (the cysts by his ears... another story completely), other respiratory infections were secondary to viral illnesses, and his lab work looks great.

In a quick nutshell, the doctor spoke directly to F, Caroline, and I. He  informed us that this dose of steroid is low.  That other doctor's have somewhat of a narrow viewpoint that is isolated to there area and level of expertise.  That they are overlooking what is most important and that is the comfort of the patient.  That if F breaths easier his body is less stressed.  He will have fewer seizures.  He will be more comfortable which is ultimately most important.  He should be breathing comfortably enough to ENJOY his life and his life's daily activities.  Which F admits he's been less comfortable and it has impacted his activities.

I love that the doctor and F interacted together.  The doctor understood by facial expression and F's head turns all of his yes and no responses (we do not use high tech communication at appointments it's too fatiguing and stressful).  F was pleased with the doctor's plan for him. F was not happy when learned he can no longer be a patient in the clinic because of his age, but was relieved and pleased when he told F  he is only a phone call away and that his primary care doctor or any other doctor is always welcome to call and consult with him about his respiratory needs.  We have to be diligent and find a primary care doctor who is willing to put the focus on keeping F comfortable to enjoy his daily life and not on solving whatever problem is right in front of us for that moment be it a skin infection, ear infection, or cold.

F needs to be cleared for surgery to have his preauricular cysts removed.  Due to the increased inflammation he developed from the use of the lower dose of prednisone from the weaning process F needs a five day prednisone burst to get it under control and then he'll return to his regular 10 mg every other day for his maintenance dose.

Overall this was a valuable learning experience for me, but mostly for F.  I think it built F's confidence in himself and his abiltiy to communicate.  That he can make his comfort a priority when it comes to his daily needs and care.  That it is VERY important for him to be able to live the best life he can.

OMG! I have a blog!

I started this blog with the intention of sharing my family story and haven't been quite consistent. Just when I forgot that I had a blog I decided to check on it.  Yep, it's still there.  Once you put your life out there in cyberspace it's out there... probably forever. When I checked the stats I can see that there has been some traffic.  I even checked out which posts have been getting hits.  Whether that means that it is actually being read is another story.  This made me feel obligated to post.  If the blog is getting hits.  Maybe someone is  ACTUALLY reading it? Perhaps I should stick with it after all?  Here I sit with a timer set for twenty minutes to hack out an update. I'm late for  F's second set of morning meds and I have a sink full of dishes calling me... yet here I sit.

Basically my summer has been filled with so many things. My daughter's swimming (being a swim mom and volunteering at swim meets as a USA official). Being a Taxi mom (getting these kids to all over their locations, Trying to maintain some level of running mileage (I did register for the marathon in December... not really sure what I was thinking when I did that). Trying to get a grip on my twenty plus year marriage (many arguments and counseling... we have an appointment today). I spent at least a month being sick (with some freak upper respiratory infection) and still trying to manage all of those duties.  Let's not forget all the other normal duties of laundry, house cleaning, etc.  All of this makes time fly by... so investing in this blog has not been in the forefront of my mind.  I forgot to mention I even registered as a college student... probably an epic fail for me and reality check. 

So much has happened and each one can be it's own blog entry.  Rethinking F's prednisone occurred yesterday.  Both F and I learned this week we have some weird congenital birth defect from our time as embryo's with baby gills (no joke... true statement).  My experiences as a stroke and turn official has it's own set of lessons and stories.  My list could go on and on.  For now I'll just post this and then figure out where to start.  I posted the draft I found sitting regarding our initial decision to wean F off of prednisone.  I'll try to knock out the follow-up to that one quickly.  Let's not forget the experience C and I had volunteering at the Special Olympics. Our tortoise even escaped and went on an adventure in the neighborhood. .  So I suppose rather than maintain this blog more for myself and my family so they can stop by and remember our adventures. 

The Prednisone for Asthma

In the spring of 2010, Forrest was really struggling with his asthma. He has a complicated lung system by not only the asthma, but his cerebral palsy and poor swallow and management of his own secretions and saliva. Many years without speech therapy had left him drooling with a slack jaw that just hung open. He would also allow his saliva to pool in the back of his throat resulting in some degree of aspiration that contributed to continued inflammation of his lungs and chronic respiratory infections. So that spring his pulmonologist recommended that he try a low dose of prednisone every other day. We decided at that time the benefit would out weigh the risk.

Then Forrest started getting speech therapy. Slowly and gradually I've watched him stop drooling and gag less on his saliva. He no longer has a jaw that just hangs open.  He can close his lips together.  Although he still coughs you can tell it's not always a result of his saliva running down the back of his throat.  He hasn't had pneumonia since 2010. He's done very well with respiratory infections.

I've been so distracted by the skin infections and cysts that I've given little thought to the use of prednisone until this winter when that cyst on his face abcessed shortly after a burst of prednisone. Then the infection returned after another prednisone burst. So far the doctor's have felt that the abcessing of the cysts has been influenced by the use of prednisone and the friction on the cysts based on his physical moved.

A week ago Monday we had F in the doctor office for a cyst under his arm that I just randomly discovered during his shower. We started compresses immediately. The doctor confirmed it's a cyst. During that appointment we discussed the use of the every other day prednisone. It seems that long term use has finally caught up with F.

The writing has been on the wall, but it took that appointment to really bring these secondary infections and the likelihood that there is a connection to his use of the steroids. Over time the use of the steroid begins to inhibit your body's own ability to heal and fight infection. Thus the reason we are beginning to see more and more occurrence of these infections.

We have begun the weaning process for the prednisone. I'm hopeful that with less drooling and improved oral motor skills that perhaps we can get away from the need for the steroid. My fingers are crossed.

This, that, and the other

I've really neglected my blog lately. I've been getting my daughter finished up with our home school year. I've been working on things around the house. I've been preparing my son's education budget for the following year. Just keeping  busy in general and avoiding the computer.

I've enjoyed riding my bike and running at my local bike trail while C has been at swim practice in the evening. It's been very nice to be back on my bike. Now I need to focus on improving my bike skills. I really appreciate that bike trail. Not only is the trail slightly cooler. I can see a myriad of different types of people. People watching is always fun.

Overall I've been trying to focus on what I have and the who I have in my life. I'm grateful for a warm place to sleep at night, food to eat, and healthcare. We are very fortunate to have these basic things. I am lucky.

I've been considering returning to school. I registered with the local city college. I've brushed up on my math. I'm considering nursing. I feel like my skills could rival that of many nurses already. I have a good background in quite a few things and have had exposure to techniques and nursing skills they may not see until they have graduated. I'm not considering this blindly. It may take me years to accomplish my goal. Hopefully I can manage it. Life has a funny way of putting you on another path.

I'm sitting poolside while my daughter gets a swim lesson. Appreciating her beautiful smile and the joy that swimming has brought to her life. She is growing up so fast. I'm also thinking of F. He's at the doctor with his dad. Another ruptured ear drum. The second this year. But at this moment, I'd like to just freeze time for both of my kids and live in these moments right here. How many times have I thought that? So very many. But there are more moments and memories waiting around the corner for us and I just can't wait.

Overwhelmed and lonely

Today I woke up feeling incredibly overwhelmed and lonely.  I feel completely emotional and I've had tears streaming for the last hour.  I have days like this occasionally, but it's been some time.  I am worn down.  The individuals who used to be my closest friends have lives that have transitioned into different places.  They have become incredibly busy and my schedule no loner fits theirs or they have formed friendships that are more purposeful for them.  I know that friendship comes in cycles... I KNOW this.  I long for those friendships and the escape they provided from my daily life.

Today, I also feel that overwhelming sadness of having not a single family member who has supported me or does support me in any way.  I look around at most people I know and many of them have a parent they can call for moral support or even siblings.  My sister who lives locally doesn't have at the time in her day to send anything more than a Facebook post or an occasional email.  I finally had to stop calling and trying to coordinate get togethers with her and her girls because the rejection became just to painful.  It's a hard pill to swallow that your own sister really doesn't want anything to do with you or your children.  She's never said it.  The only thing she'll admit to is being bad at maintaining relationships.  The truth is we make time for the people we care enough about to make time for.  My mother... we don't get a long.  She sends guilt money occasionally which I will happily accept simply for what it is.  But really, she's done her own damage to not only myself, but my kids.  I've tried to move beyond it, but there are times when it's just hard.  It goes back to that saying we make time for the people we care enough about to make time for... I guess I don't care enough about my relationship with her to make time for it.  My brother completely superficial and I think his sexist.  Enough said.

I'm overwhelmed worrying about college, planning for retirement, trying to think of ways to get out from under debt... the list goes on.  I'm also overwhelmed by the thought  that if I were in crisis who would I call.  You know... I can't think of one person I'd call first.  Well, okay one... maybe two or three.  But that's it.  My reality is that I have not one physical person in my life that I feel I can count on in crisis.  That thought alone overwhelms me.  I'm isolated and lonely... I know this feeling will pass, but right now it's painful and it's real!

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!

I love you...music to our ears

F's AT/AAC team was here a week ago. They updated his maestro for him. He had wanted some comments for family added to it. One being "I love you".

He's been using the maestro and learning the new format. We've got it set up so that he has a personal speaker for his prompts and then the loud speaker for us. This cuts down in the confusion about what he's saying.

While sitting in the family room with us. He was chatting away and more or less exploring the new comments and then finally it came R hears's "I love you". He checked f's screen to see what it was he said, but this comment didn't show on the screen (an adjustment is necessary). Upon being asked what he said within a few
minutes he repeated "I love you". We were overjoyed. It has taken f almost 19 years to have the ability to say I love you to us. His smile said it all. Our hearts were so full at that moment.

I was telling his speech therapist about it and he beamed from ear to ear with pride. This is a milestone we have all waited a very long time for.

To Leave or Not Leave When My Boy is Sick :(

Last Friday upon my return from swim practice, I walked in took one look at my boy and I knew he was getting sick.  Cough, cough, cough was all I heard him do that day... although not unusual for the spring season the amount of coughing was.  I asked if he felt like he was getting sick and a resounding "yes" response came from him.  I was torn.

The next day I was scheduled to get C up bright and early to be not he road for an out of town swim meet.  We were only traveling an hour away from home.  I knew I could return if needed.  I knew F would be in R's care (his dad)... but the pit in my stomach was there and it was all I could do to think about leaving.  R assured me he would be attentive and on the respiratory care.  R does a good job with almost everything for F, but there are times when he gets distracted or doesn't notice the little signs and signals F's been giving him that say "I need something" until it's too late.  And let's face it, it's a mom thing.

My anxiety was at an all new level after having F wake me up at 3:25 in the morning in full respiratory distress and fever.  He was panting.  Fever 101.6 axillary.  Respirations to many to count.  We have an O2 sat monitor he was at 89 and his HR was 150!!! I was freaking.  I immediately started albuteral. Stripped him down to a t-shirt.  Wiped him down with a cool cloth.  Within just a few minutes of the albuteral his numbers started to rise an fall.  By it's completion he was up to 94/95 and his heart rate was at 132.  I gave him a cup of water and some tylenol.  I got him calm and comfortable and went back to bed by 4:20 or so.  The alarm was set for 5 am!

R thankfully awoke at the early hour upon hearing about the crisis during the night.  He packed our ice chest and filled our thermoses.  He was already on my computer printing a med list.  Had it planned to call on-call doctor and get F to urgent care.  We both knew a prednisone burst would be necessary.  Much to my relief R was on it with a plan.  I was so torn to leave, but knew that R needed to be able to come through for us girls so that we could get away for the meet.  R also needed to show F that dad can come through and take care of business when it needs to be done.  The two of them have been bonding a lot while I'm gone with C at swim practice each night.  I think it's been good for the two guys to not only work on their communication, but for R to work on being a better partner and assistant to F.  It's been nice to see them grow closer.

But the truth is when F is sick... I HATE to be that far away from him. He's pretty stable with his health, but that asthma and respiratory piece combined can cause sudden crisis and I'd hate to not have my opportunity to be with him.  I know what a way to think the worst!  But most kids I've known like F didn't make it to adulthood they died in some state of respiratory illness or distress between 8 and 12.  I've... we've been so lucky to have F almost 19 years now.

To make a long story short... R handled the illness with flying colors.  He pulled night shift respiratory duty the night I was gone.  He did a really good job for F as his nurse/respiratory therapist this weekend.   I didn't worry too much while I was gone.  C and I enjoyed our weekend... only to return with colds ourselves. F hasn't quite returned to his baseline, but he'll get there.  How we all love that kid!

My Baby was Born with Cancer

It's come to that point where it's time to talk about Cienna, my first daughter.  The little sweet girl who came into our lives at just the right time to give our lives some new perspective.  I can remember being quite focused on F and all of his issues, baggage, complications... call it whatever you like he wasn't a normal healthy baby and I was in constant crisis mode with him.  Then this sweet baby girl came into our lives and we were introduced to a couple of things.  The first, what it was like to have a baby that had normal motor function.  The second, babies can be born with cancer.  Yes, born with cancer.

Cienna was born on January 18, 1995.  I remember the morning very well.  R had a doctor's appointment prior to the scheduled Cesarean.  As soon as we were done we walked over to the hospital and checked in for her scheduled delivery. I can't remember if R's mom was caring for F or if we'd made arrangements for hm to stay at the Rotary House (a local respite facility for special needs children or children with health needs). Cienna had a normal Cesarean delivery.  She weighed 8 pounds 5 ounces.  She was so beautiful.

We took her home and everything seemed to be going well.  We adjusted to our new family.  My mother-in-law stayed to help me with F because I was unable to lift him.  I can remember this day as if it was yesterday.  My mother-in-law says to me "I noticed Cienan's eye has a funny look to it in certain light." Then she showed me what she saw.  In just the right light you could see the light bounce off the inside of Cienna's eye and shimmer in a weird pink reflective way. It was almost like when a cat or dog's eyes reflects light, except a different color.

Monday morning I call the pediatricians office.  I made an appointment for the following day.  The next day is Valentines Day.  R and I take her to the pediatrician and I show her exactly what my mother-in-law saw.  Cienna's red reflex was normal, but the eye had that reflective glow.  Our pediatrician says to us it could be a congenital detached retina or this "one really rare thing called retinoblastoma, but it's so rare a pediatrician may never ever see a case of it in their entire career."  We leave the appointment knowing we will be referred to a pediatric opthamologist who we already knew because she was F's doctor.

I can remember going to dinner and a movie with R that night.  I don't remember what we saw or even if we talked about what happened at the pediatrician's office that morning.  I just remember neither of us could or would be prepared to deal with what was to come.

The phone rang at about 9 am.  It was the ophthalmologist's office.  They were calling to find out how soon we could get Cienna into the office.  You'd think that I'd have really thought about this call and what it meant, the urgency of it. I was naive and had no clue.  R and I arrive at the appointment and we wait and wait.  They are literally squeezing us in.  The doctor comes in does her initial evaluation and then she needs to dilate Cienna's eyes so we wait some more.  Eventually, we've been there long enough that R needs to leave for work.  Finally, the time comes when the doctor comes in for the detailed exam of Cienna's eyes. They put these little metal things on her eyelids to force them to stay open and it was HORRIBLE.  Cienna was crying and crying.  It was very unpleasant.  After my new baby girl is done being tortured, the doctor looks right at me and says "She has retinoblastoma in both eyes.  The right eye's tumor is very large.  I'm going to immediately send you to Children's for an MRI. I will refer you to UCSF or Children's Hospital Los Angeles." What?  My head is spinning.  I'm not really sure I'm grasping the situation at this moment.

I call R and his mom.  R leaves work early or his mom comes to get us.  I can't really remember.  We head to the local children's hospital for the MRI.  We run into my favorite doctor, Dr. Hutch.  F's neurologist.  He is shocked to see us.  We explain what's happening. His look should have told me a lot, but again CLUELESS! The ophthalmologist calls us on the hospital phone to give us the results.  Cienna's right eye is 98 percent tumor and needs to be removed IMMEDIATELY!  We are told she will call us later in the evening to tell us which hospital we are going to be referred to.  Our heads are spinning!

The phone finally rings.  We are told that arrangements have been made with the Dr. in Los Angeles.  We need to leave the next morning.  It's Thursday.  The surgery is scheduled for Friday.  We are in shock.

We get up and leave the house as early as possible.  We arrive with the MRI films and we are waiting in the eye clinic.  The doctor comes in and tells us the procedure to remove the eye is very simple.  All aspects are covered and the recovery process.  Then he proceeds to tell us that she will be referred to hematology oncology and they will put together her treatment plan for her CHEMOTHERAPY.  R and I look right at each other.

The room is spinning.  "What?  Chemotherapy You say?"

Doctor "Yes, chemotherapy that is how we treat retinoblastoma in conjunction with laser therapy..." more things are said, but at that moment.  My head is spinning and my heart is broken into a million pieces once again.

Me "You mean this is cancer."

Doctor, "Yes, retinoblastoma is a rare children's cancer that affects the eyes.  She has the bilateral version..." then he goes into the blah, blahs about the genetic aspect of the disease.

I don't think we were really listening anymore because we were just told that our daughter had been BORN with cancer.  Cancer grew in that right eye all through her in-utero development.

**Their Newsletter just arrived in my inbox. If I can figure out how to imbed or attach it I will.  For now here is the link:

Retinoblastoma International