Piggies

Gabriel has wanted guinea pigs for a long time.  We finally relented for Christmas and Santa left a letter for all three kids along with a cage and the needed acessories.  The kids were so excited to pick out new family members 

The day after Christmas we went to the pet store and picked out two baby piggies.  As reluctant as I was to get two more pets and have the responsibility, I have to admit, they have grown on me quickly.  They are pretty darn cute.  

Even their little noises are endearing at this point.   It will be fun to get to know their personalities in the coming weeks.   So meet Pica Puppy (the brown one) and Mike Henry (the black and white one)....

Surgery number 8

Every time I sit down to write about a surgery I have coming up, words fail to adequately describe how I am feeling.  I don't want to come across as the needy, whiny person or the friend who is seeking attention either   Yet in some ways I do have some rare moments when I want to talk about my chronic pain and my fear of surgery.  I want to cry and be held.  Other times I don't want to talk about it at all and I want to pretend like I don't have a pseudo-tumor. 

Here it is --- surgery number 8.  Decompression surgery  

My brain surgery will be performed by the same neurosurgeon who performed Alex's surgery.  His surgery was flawless and gives me much hope.  My surgeon has a ton of experience with Chiari decompression as well. 

My fears lie in the fact that it is MY head. Brain surgery is much harder to recover from as an adult and I have many added complications and risk factors.  I've also witnessed my now eleven year old fight for his life when he battled bacterial meningitis after the same surgery developed a cerebrospinal fluid leak  

My complications have been added due to having IIH (idiopathic intracranial hypertension),   The mix of the two conditions has made me a complex zebra in the medical world as stated by three neurologists and a neurosurgeon. 

I have cerebrospinal fluid pooling and my dura is already thinning.  I have a liklihood of losing my eye sight and having my dura leak on its own.  

It is unknown what symptoms will be alleviated, if any after surgery.  Perhaps I will feel great!  Maybe nothing will feel better or just a few symptoms. There is a greater chance than other surgeries that I won't wake up at all or that I won't have my eye sight.  

Today I got the courage, after months of putting it off, to call and schedule the surgery.  I asked for a date in March.  I spoke to the nurse and we discussed the recovery time line and she wanted to make sure I understood the risks and possible complications since I'm one of their zebras. (Why oh why?!)   After we went through the risks, I said, ok Julie, this is the moment when I swear and cry and she said, "yes I know and it's ok."   I adore that woman. 

The recovery time line is brutal -- 3-5 days in icu; 3-6 weeks of doing NOTHING at home. If I've been a good patient and I haven't developed a leak, at six weeks I'll be able to walk again.  3 months, running will be allowed.  6 months - it's possible to see symptoms disappearing but it isn't until 12 months that it's known if the surgery worked.  12 months --  crap!!!   

It isn't the end of the world but I'm scared. It's my head.  He opens my skull and touches my brain!  He even removes a teeny tiny portion   What if that's the portion that makes up the charismatic part of me?!  

Until March, I'll keep on my brave face to the world. Unless you're with me in that unfortunate, crumbling moment, and you see the tears, we will get past it quickly because  I know I'm not a cute crier and I want to continue to love life with all I have right now    

Jessica's Head

I have failed miserably to update my blog.  Life marches on and I couldn't bear to share my soul on here.  I've been given two difficult diagnoses over the past few months and I've taken time to digest the news.  

While the diagnosis isn't terminal, it is serious and with considerable risk.  Rather than curl up in a ball and cry all day, I'm challenging life and savoring all it has to offer.  I'm loving deeper than I ever have, I see colors richer, the world feels more intense. I try to give my time more freely to those I care about because  I realize my time is a precious gift.  

Today the color green has captivated me. The different shades on trees is mesmerizing even as I drive down the highway or sit waiting in a parking lot.  On just one tree, there are numerous shades of one color of green.  It's amazing.  

Yesterday I stood at the beach.  I watched the pelicans float lazily in the sky.  I felt the breeze against my face as the waves roared and crashed into the sandy beach.  The sandpipers scurried across the sand looking for their lunch. 

I study my children's faces and memorize every minute detail.  I watch the way they move and run.  I savor their laughter and enjoy their antics throughout the day.  

I'm also challenging life again. I more active by walking with friends regularly.  I volunteer when time allows.  I follow through with doctors appointments and physical therapy.  I find time to climb rock walls, go zip lining, and go on other adrenaline raising adventures. 

I was diagnosed with Chiari months ago and while that diagnosis didn't settle well, I was prepared for it given the boys surgeries and everything we've gone through with them.  I was not prepared to hear that I have IIH in addition to Chiari. 

IIH is idiopathic ibtercranial hypertension. It was known as psuedotumor cerebri, meaning false brain tumor.  I think I read 1:100,000 people are diagnosed with IIH and to have both is even less common.  I am a zebra in the medical world.  

My dura is thin and there is pooling of my cerebrospinal fluid. I'm at risk of going blind and developing hydrocephalus, thus requiring a shunt.  My dura could break on its own and cause a spontaneous leak of cerebrospinal fluid.  This puts me at risk for developing bacterial meningitis which carries its own risk factors.  

There are few treatment options for either IIH or Chiari.  IIH can be treated with spinal taps and medication.  Medication hasn't been recommended for me at this point because they don't know what my pressure is and a spinal tap could make my Chiari worse, meaning it could cause permanent damage.  

Decompression surgery has been recommended where the cerebral tonsil (16 mm herniation) and top vertebral would be removed.  A greater space would be created by opening my dura and putting a patch made of my own skin in its place. 

The outcome of surgery can be anywhere from a typical good outcome to fatality.  I'm at higher risk for a leak which puts me at higher risk for bacterial meningitis.  I'm also at high risk for blindness.  I can either take the chance at feeling better after surgey or continue down this path of chronic pain which also means I'm still at risk for a leak, hydrocephalus, and blindness.  Then there's the risk of fatality.  

It's quite the precarious situation   It wasn't easy to hear the neurosurgery say, "Jessica, you're an interesting case and in the neuro world, that's never a good thing to hear." "Shall we dive right in since you're already familiar with Chiari?" I gulped, bit my lip so I didn't cry, and listened as he explained the above to me.   Time has passed and I'm still digesting the information some days.  Most days I'm at peace because I can't change what is happening.  Other days I'm angry at the world and perhaps one day a month, I want to cry and feel the hot tears fall on my shirt because it proves I am still alive.  And then I get up and find a new adventure before I have to face a risky surgery. 

Scheduled Surgery

I've experienced six surgeries in my life.  Three c-sections, a tubal ligation, appendectomy, and a cholecystectomy completes my list of surgeries. All of these surgeries were performed on an emergency basis.  

As my calendar turns from September to October, the reality of a scheduled surgery smacks me in the face every time I flip the page. If I want to schedule a dinner, an appointment, or an outing with a friend, the reality of surgery and recovery is looming on October 23rd.  

A hysterectomy isn't a hesitation for me.  I've dealt with problems for years and it is a logical option and a choice at this time. I've been in pain for years and it's time for the surgery.   Full recovery should take  six weeks at most, driving privileges after two weeks.

What strikes me harder is that just beyond a hysterectomy is my brain surgery.  My neurosurgeon wants me to have surgery by March.  It seemed far away when he first mentioned March.   However,  as I stare at my calendar, I realize I will be recovered by December.  Then I will deal with the holidays and then in full swing with life through January and February, and March will be here before I know it. 

My head will have a massive zipper scar down the back in less than six months and it doesn't rest well with me.  My anxiety level is high, perhaps higher than when I faced this with both my sons  brain surgeries. 

Instead, I focus on accomplishing things I have wanted to do for a while.  I conquered my fear of heights by climbing a rock wall.  

Even though I am crossing off a bucket list, I also enjoy the little things in life lately. I tend to memorize my children's faces  and listen to their little voices.  I stare at the colors of the sky and notice the leaves on the trees.  The warmth of the sun on my face is intoxicating.  It really is a wonderful life.  

Three Of Us

Last Thursday, we took Alex to his appointment with the Chiari specialist in Orlando. This doctor is also a neurosurgeon. After the eight hours of MRIs, where Alex refused sedation. it was time to discuss cerebrospinal fluid blockage, arachnoid webs, cysts, and asymmetrical ventricles. I have far more knowledge of the brain than I ever thought necessary.

This doctor is Alex's 10th specialist that he has seen since October. We've met with so many different specialists, tested him for different diseases and problems, and discussed his symptoms. Yet chiari is the only problem we've found.
Alex's fluid blockage and cerebral tonsils looked the same as the prior MRI.
Once the MRI didn't show any remarkable changes, then the neurosurgeon discussed symptoms. Quality of life is taken into consideration as we discussed our notebook full of symptoms. Page after page lists gagging, dizziness, headaches, leg and foot pain, hand and arm pain, body weakness, neck pain, temperature regulation issues, screaming, and nose bleeds.
The neurosurgeon weighed the risks and benefits with us. Alex has a 50% chance of surgery working and a 10% risk of a leak after surgery with further complications. I was ready to walk out the door and continue seeking answers for him. But where would we go? We've seen every specialist recommended to us and the only other option is to wait a couple years to receive a blanket type diagnosis that simply means he has chronic pain and needs to continue with pain medication.
That's when the neurosurgeon looked at us and said, "if it was my child, I would do it." The possibility of regaining his quality of life outweighs the risks. We talked a little longer about a surgery date and the details. I asked him, in order to be sure, and so I could hear it again, "would you do this surgery if your child presented the same?" "Yes," he said.
At that moment I let a few tears escape because brain surgery is the answer though it doesn't feel quite right to hand another child over to have their skull cut open. I don't know how I will let my grip go or how I will trust that this stranger will take great care of my son.
In 16 days, that is what I will do. I will have faith in the doctor's training and experience. I will trust that my friends and family will rally with us. I will hold on to knowing that my son will come home without complications. I have to hold on to that because yesterday, Alex sat next to me crying. When he was able to speak, he told me that he was scared about getting an infection in his brain. I was able to comfort him and talk through his pain but the entire time, the nagging reality pulled at my heart. 

At the end of Alex's appointment, I told the doctor that I had an MRI a couple years ago. The neurologist thought that I had MS but I was cleared of it. I was diagnosed with fibromyalgia and sjogrens. While I was never comfortable with the diagnosis of fibromyalia, I had a diagnosis. I was glad to be done with testing and moved on with the fact that I could do little about my chronic pain.
The doctor asked to see my MRI, which was just a photo on my phone. It took a second for him to look at the MRI and I was diagnosed with chiari. Yep, there it is. I have chiari. The doctor wants me to get the disc with the MRI, make an appointment with a new neurologist, and then schedule an appointment with him to discuss surgery.
In an effort to compartmentalize my world, I haven't spoken about myself and my symptoms to many people. I have to concentrate on my children. However, several friends have asked me why I thought I had chiari. In some ways, my silence has been misleading.
Over two years ago, my pain got increasingly worse. It has been a strange road. Degenerative discs were found but no real reason for my pain. I tried pain medication that wasn't narcotic-based. I gained a lot of weight but didn't feel better. I was told to walk more, move more, and I would feel better but I didn't. I stopped taking the medication and the chronic pain has continued. 

I have migraines, neck pain, back pain, tingling hands and feet, and sore joints.  I get electrical type shock down my face and body.  I have hot flashes that aren't menopausal related.  I get dizzy and forget things easily.  Some days I can barely walk because it feels like my feet are enormous stumps.  There are numerous pains that come and go and aren't associated with extra weight or age.  

Just over a year ago, the pain was intense.  The ongoing pain caused depression that I haven't been able to overcome completely.   It's difficult to love life when your day is full of pain, even if I have a beautiful life.  I confided in a few people about what was going on, and spoke to my primary doctor.  Venting, crying, smiling through the pain but nothing really helped.  

Now I know that my brain is herniating into my spinal column.   No wonder I feel like crap.  I'll keep my brave face on for the world that doesn't care to see more but inside I am crumbling.  

New Era...

Certain people have decided that they don't want to be apart of my children's lives. It's not okay but it's their choice. They make no effort to contact the kids. No effort to see them. No effort to show that they give a damn about surgeries and cancer scares.
So we are in a new era. We are surrounding ourselves with people who want to be with the kids. Non-biological aunts and uncles and a grandma and grandpa thrown in (but hopefully we will be in WI soon to see their biological grandparents).
It isn't about stuff - it's about being present. Making time and showing that you care for these tender-hearted, sweet beings. My job is to protect their hearts and I will do it until I can no longer.
So material things are being thrown out. They no longer ask about you. You are no longer there and anything that would make me explain that to them in a way they can understand is going in the trash. I am not doing it to be malicious, but rather, to protect them.
They will be raised without the knowledge that you just don't care. They don't need to know that you don't value them enough to take time for them. They will be raised to know they are loved beyond measure, that autism is not too much for us. That we won't abandon them for poor choices, or for harsh words, or the truth. We will stand by them and love them, and they won't get thrown in a group home because the responsibility is too great.
You are missing out and while you live in a fantasy that your world is perfect and fine, you know deep down that your choices are wrong. It's all your problem. You are missing out. It's your lies and deceit and frankly, my dear, I don't give a damn any more.

New Cloth

Two of my friends have painting businesses.  I love their work and we actually met through my purchases.  I'm adding turquoise to our living room as Gabriel becomes less demanding about the color red. 

 Hooray for a house with less red!  Red is fine but it is not easy to work with when it is everywhere.  Over three years later and I can get different colors.  Oh the joys of autism are never ending. 

I changed the black and white prints to this bright turquoise print.  Now the bench and chair match and that's quite exciting to me.  I was surprised at how dirty the cloth was when I removed it.  Truly disturbing how filthy cloth gets in a matter of years. 

It was more time consuming than I imagined   Removing a zillion staples and then running out of staples, purchasing the wrong ones, etc made it a longer project than anticipated.  Clearly, I'm. It an upholsterer by nature.   

42 years later

Last year was overwhelming and painful, both emotionally and physically.  It was a year of treading water and sinking daily.  When I reached out to some of the wrong people in my small support group, I was let down.  Further adding to my stress and loneliness.  

Now that the kids are in school full time (since January), I've been able to regroup.  I am working out, developing healthy friendships, and reorganizing our lives and home.  It's a process after the turmoil of the last couple years but I'm getting there.  

I turned 42 yesterday.  I was spoiled rotten by my family.  Andrew took us to a beach hotel.  We had fun swimming and splurging on a nice meal. 

I was spoiled with material things.  He really went overboard in his gift gifting.  I

I feel so spoiled!  I usually don't post about my gifts but I was blown away with his generosity.  

I had lunch with Alex's teacher and the class made cards for me.  They are adorable cards. I even received a huge surprise of flowers from my aunt.  I feel loved when I have recently questioned if I am loveable at all. 

We also at ice cream cake for dinner!  Good thing I worked out earlier in the day! 

Chapter Book

One of the third grade teachers allowed me to borrow James and the Giant Peach.  Lane and I spent several nights reading it.  I wasn't entirely sure if, at the age of five, she understood what we were reading.  We trudged on any way. 

Then Alex's third grade teacher loaned the movie to me.  Prior to reading the book, James and his Peach weren't on my radar at all.  I had zero interest in reading it.

It was a great book and a fun movie!  I am so glad we took the time to read the book and followed up with the movie.  

I'm thrilled to report that Lane asked me if we could compare and contrast the movie and the book! She remembered the differences and similarities of the two and that was very exciting.  I'm so glad she has high comprehension skills.  Now that her first chapter book is read, it's time to pick another one.  

Alex and Chiari

Alexander was diagnosed with Chiari in October, just two months after we came home from the hospital with Gabriel. I had a feeling that he had it after our experience with Gabriel. I'm quite sure the neurosurgeon agreed to an MRI on Alex just to appease me or to prove me wrong.
I would have been more than happy to be wrong this time. Since Alex's diagnosis, we have been to nine specialists total for him. We've had a cancer scare and numerous other scares, not all of which have been ruled out yet since it can take months for genetic panels to come back from the lab.
My poor little 48 lb 8 year old cries in pain, complains of dizziness and headaches, and numbness, and gags on food. He has a tough time sleeping and we know that he has central apnea. His leg pain is significant enough to excuse him from P.E. class. His pain breaks my heart daily. The multiple pain medications aren't diminishing his pain enough and I hate that he has to take pain medication at his age. It seems like something is wrong with the universe.
Alex screams a lot now. It's a reminder of Gabriel's pain a year ago without the aggression, for the most part. I've tried hugging him and holding him, hiding my own tears as he tries to make sense of his physical struggle.
We now consult with two neurosurgeons. Chiari is a fiery beast. We have to beg the surgeon to cut our son's skull open in an effort to relieve his symptoms, while not really wanting to face the reality at all. We have half a notebook full of notes about his pain, his sleeping habits, his behavior, and his eating habits.
As with Gabriel, the surgery is not a permanent fix, it's a band-aid. Alex has a pineal cyst that we have to keep an eye on as well as a large right ventricle. He has arachnoid webbing right where the chiari is located and it is believed that this is where his cerebral-spinal fluid is blocked, but the MRI in October wasn't clear on that area.

Alex experienced four MRI's, taking a total of 13 hours including travel time and from the hospital. On two Thursday nights, we made our way to the hospital in order to complete for extensive flow study (CINE) MRIs to see if we can find a tethered cord, syrnx or CSF blockage.
Alex was an incredible patient. He refused sedation because he wanted to experience the entire MRI again. A couple things had to be repeated due to movement, but he made it through it. A few of the hospital employees commented on how I was able to get Alex to stay so still. Nothing, I did absolutely nothing was all I could reply. I wish I had a magic formula but it was really all Alex's doing and had nothing to do with me or my parenting.
If the doctors can find either of these two things, Alex's surgery goes from a 50% success rate to an 80% success rate. I like the 80% odds better. The surgeons due too. They don't want to cut his head open, remove vertebrae, skull, and cerebellum and it is a big failure.
So, here we sit, our summer in limbo, until we have our meetings with the neurosurgeons again to see if the MRIs are more clear, allowing us to make an informed decision.

Onomatopoeia

Alex has a third grade hat parade next week. In order to prepare, he was given a vocabulary word. He had to make a sign, write on an index card, and create a hat that represented his given word.
Alex's vocab word was onomatopoeia. We had so much fun discussing an appropriate way to create an onomatopoeia hat. I grabbed a hat at the dollar tree. (He wasn't thrilled that I didn't get a fancier hat) We found examples of onomatopoeia online and we printed it out on card stock. The words were added to the hat band and on pipe cleaners, sticking out of the hat. Alex added glitter glue for some extra bang! (get it?) 

He was very proud of his creative work and I am too. I enjoy watching his creative side come out during educational projects.

Haircuts

Gabriel copes with his anxiety and haircuts by asking Lane to get her hair trimmed at the same time. This presents a problem when Alex wants to be included but so far we've made it work. Gabriel and Lane go first and then Alex has his turn. Lane still wants long hair so it's a simple hair cut for her.
The stylist asked Lane if she wanted her hair washed this time and she happily tried out the "big girl" hair wash. It was just as exciting to see Lane get her hair washed in a salon as it was to see each of my children get their first hair cuts. 

 
Lane's hair wash prompted the boys to ask for the same so off they went to the sinks too. Gabriel was anxious about water in his ears and eyes and ended up with a shirt drenched in water. Alex was able to stay still though.
It's getting easier to take the kids for simple things like haircuts. I'm glad the days of avoiding salons/barbers for a couple years is past us (for now). I'm glad I don't have to trim their hair unless I want to save money. I haven't lost sight of how challenging it was just a mere year ago to find a place to take the boys for hair cuts and I am grateful we are in this better place.

Dinosaur World

Every time we drive to the Tampa area, we pass a place called Dinosaur World. We've driven past it many times since 2001 and every time we tell each other that we should check the place out. The problem being that there are so many cool places to go to here in Central Florida that we forget about some of them.
One of the coupon sites had discounts on admission, making it more feasible to jump at the opportunity to try something new. I anticipated a run down, very small park. What we found we much better. I supposed it's good to have low expectations!

The kids enjoyed a large playground. There was a building with an education tour. We learned about fossils and how archeologists dig and find fossils. In the building there was a touching area, which is always a good thing for my three sensory kids. 

Our favorite part was the walk through trees and over a stream that showcased many dinosaurs. The kids were learned a lot and wanted to read every sign. It was well shaded and showcased Florida's natural beauty.
There are no rides or food stands and that was a positive for me. It was nice to have a day of walking around and learning about new things. The kids didn't even know they were learning, double bonus!
I don't think I would go back, unless we had a huge dinosaur buff or a toddler who enjoyed running around a nice park. I don't think it would hold my kids' interest again. It is worth the visit, especially with a coupon.

Poster Action

Alex's teacher led me into a classroom, pointed to a poster on a wall and said, "I want that."   Gulp. I haven't been creative in a while but I adore his teacher and classmates so I took on the task. 

It took me a few days to contemplate what was needed to recreate a similar poster.  

I don't know why I got nervous when u saw the poster.  It seemed like a big undertaking for me.  After assembling the necessary products, including stencils and scrapbook paper, I had fun assembling the poster. I had to resist pulling out the glitter! 

I think the third graders will learn how to work with rubrics and assessing their achievement using this poster. One side is intended for math and the other side for reading.  All that is left to do is dropping it off for lamination.   I look forward to seeing it on the wall in Alex's classroom.  

Keep On Swimmin'

Prior to meeting our GREAT aunt and uncle for dinner on Saturday, Gabriel informed us that he wanted to domesticate a shark. Since we were headed to the coast to watch a movie and have dinner, we took a big bucket with us. Gabriel knew there was a dock with fishermen on it near the restaurant and he was prepared to get his shark. (what the hell am I going to do with a shark?!!)

We had a nice dinner with lovely company and conversation. The older I get, the more I appreciate time with people who share their lives with us. It is a gift.
Gabriel proceeded to the dock and found a fisherman with a plastic bag full of bait fish. He allowed Gabriel to pick one out, essentially saving the fish's life. Gabriel happily put the fish in this yellow bucket and named him Jake. (somehow this felt better than a shark to me, maybe I can keep a little fish alive?) 

Gabriel excitedly showed his Jake to people who walked near him. He was thrilled.
Then a woman about my age walked past Gabriel and as she gawked at the fish, she told Gabriel that he needed to put the fish back because he was killing the fish. Over and over again, she told my kind-hearted child that he was killing a fish who in fact, he saved. Gabriel looks neurotypical, "normal", if you will, so I can't complain about her ignorance when she first meets my son.
My aunt told her to stop a few times. I don't know if she envisioned a possible massive meltdown but I did. I was impressed that my aunt, who did not raise children in a day and age of autism awareness, was willing to step up and ask this stranger to stop talking about a fish's death.
As the stranger began walking away, I quietly informed her that Gabriel has autism and everything will be okay. She raised her voice and told me not to use autism as an excuse! 

 
Holy hell, I was pissed. I think it's the closest I've come to wanting to punch someone in the throat. Really? The kid SAVED the fish from his death and now you're going to tell me I use autism as an excuse. I wish I had just said, "well, fuck you, you nosy bitch." I didn't. My relatives and children were with me and it wouldn't help someone so ignorant.
These are things we deal with constantly.
This person had no idea how we got to this situation. Gabriel was sad when he learned that our fish named Flower died. He wanted to ease his pain by getting a shark. Instead, he had a fish named Jake in a bucket. Why did this woman think the situation warranted her comments.
It took about an hour but Gabriel decided that he wanted Jake to live a happy life. Jake actually swam away when Gabriel released him. Keep on swimmin' Jake!

Exotropia Strabismus

Lane had eye surgery for exotropia strabismus a couple years ago.  In other words, she has a lazy eye that tends to drift outward. It isn't as noticeable as it was at the time of surgery but it does drift still. 

She also has some vision loss and she's officially far sighted.  I think the medical term is amblyopia. Unfortunately, she can't correct her vision with glasses because it will make her lazy eye worse.  

Shortly after Lane had surgery, her ophthalmologist moved offices.  I was thrilled when I found her at the same hospital where the boys' specialists are located.  Even better -- she remembered us! 

Lane had the same tests that she had a year ago but this time she was able to read the letters rather than name pictures.  It was an obvious developmental growth and so fun to watch.  

 

Lane hates the dialation drops but she loves the plastic glasses given to her at the end of the appointment.

As long as things stay the same, we will go back in a year to check her vision again. 

Spirit Week 2015

Spirit Week at the kids' school this week has been a lot of fun for us. I'm grateful for the help of a good friend to pull fifteen outfits together for the week. 
Monday was Team Day. Lane was least thrilled about Team Day because she doesn't have a favorite team. Alex was fine with the Packers and Gabriel had to wear his Raven's purple.

 

  

Tuesday was 80s day. Lane wanted to see photos of me in the 80s to make sure I really wore the bright colors we picked out for her. The kids wore their jelly bracelets and 80s buttons. It was a bright day in our house!

Mustache day was a great one day on Wednesday. The kids picked out large, colorful mustaches for their faces, Alex even added an orange mustache to his forehead. Apparently the kids were asked for their mustaches on their shirts and they shared them. They came home with less mustaches than they went to school with in the morning. 

Thursday was 50s day. Alex's teacher named him the Fonz. Gabriel picked out some cute 50s glasses to wear and Lane was adorable in her poodle skirt. 

Friday was Career day. Alex had a tough time choosing what he wanted to wear. He wants to invent a time machine and he wants to be the President also. Gabriel wants to be a veterinarian or a dog trainer. Lane wants to be a doctor.  Apparently they all have high aspirations right now.  You go Mai kids!!

Frostbite

When I was a senior in high school, a relative and I got into a huge argument. It was nothing new. This relative has an abusive, sad past. After smashing my photos in frames that hung on my bedroom wall, the relative told me to leave the house and I complied, though it wasn't willingly.
I had nylons on my feet and no shoes. We lived in the country, on a highway road. I didn't think to grab my car keys and just left the house, probably slamming the door on the way out.
Unfortunately, it was the end of December. The road was sheer ice and the temperatures were frigid. I walked to a neighbors house, which was a country span away from our home. My nylons froze to my feet as I walked, tears staining my face. My nose felt frozen shut as each breath was caught in the cold air.
It was black outside but the stars and bright moon lit the way as I trudged along on the icy highway. My feet began to burn but I didn't know where else to go. I had no money. I had no clothing or belongings with me.
Eventually one relative told the other one to get me. I was carried home but the damage was done. Physically and emotionally, I was damaged yet again.
I spent Christmas Eve in the ER getting crutches and pain medication for my frostbitten feet.

What is frostbite? According to Dr. John Wogan at the Greater Baltimore Medical Center: Frostbite is what happens when exposure to severe cold temperatures reduces blood flow and causes ice-crystals to form inside body tissues, leading to serious, even irreversible, damage. Frostbite can result in permanent nerve injury - primarily numbness or pain - and tissue destruction, even the loss of fingers or toes.
Are there long-term problems associated with frostbite?
Yes. You may develop numbness to the skin and sensitivity to the cold. Severe frostbite can cause loss of the involved body tissue, e.g., tips of the nose, ears, toes and fingers.

No one in the hospital questioned what happened. I don't even know if this would have been grounds to remove me from the home over twenty years ago but no one asked me how my feet were damaged.
I could barely walk due to the blisters covering my feet and I was told that I wasn't allowed to tell my relatives what happened. "Kids" at school whispered. I later learned that everyone believed I had sex in the snow and that's how I got frostbite on my feet. As if I would be so stupid as to have sex in the snow long enough to cause frostbite. Somehow the humiliation of that story was less humiliating than the truth, that I wasn't cherished enough to keep safe. That someone I loved and who was supposed to protect me, did not. The hurt and pain was confounded on my fronts.
Yet I survived, as most people do. I moved on but every year I remember what happened. It took me this long to share this truth. I remember every year because it is this time of year, when it is cold, that I can feel the same burn. My feet scream at me in pain and I have a difficult time walking until they stop the painful tingling.
I told my children this morning that I wasn't feeling well and I needed a little more time to get ready. The truth is, my feet burned with a lessor pain, but a similar one, of 23 years ago.
It still hurts 23 years later but I continue on. I wish I could say that this relative forever wanted to make this wrong better but that isn't the way this story has ended. From this, I know that I never want to be the person who causes this type of pain on someone, especially a relative. My family is loved and I work on showing them every day how wanted and appreciated they are, because they deserve it.

Letter From Mama Bear

A few weeks ago, Gabriel hit another child at school. I was so disappointed in his impulsive behavior and sad that he had to deal with the consequences of his behavior.
When I took Gabriel on his field trip to Epcot, he was thrilled to see two of his classmates, who happen to be twins. He ran up to them excitedly and said hello to them. The mother wasn't smiling and she was unapproachable. She asked me to repeat my son's name and I did. She then launched into a tirade about how much she didn't appreciate Gabriel hitting her son, completely taking me aback, due to the lack of consideration of our children and the inappropriateness of the conversation.
While I am grateful for honesty, a field trip was not an appropriate location for this type of conversation. The conversation then lead to a transitional meltdown for about an hour. Poor Gabriel's mood was dashed after this mother discussed a negative moment with me in front of him.
Gabriel was able to turn himself around for the rest of the day, but as we left, he saw the twins and the mother and had another long meltdown. He expressed his emotions well and it was clear that her comments were a direct cause of his discomfort.
As his Mama Bear, I wanted to yell at her and tell her what a bitch I thought she was for causing such overwhelming anxiety in my child. We all know that he shouldn't hit anyone. No one thinks that behavior is justified or acceptable but her comments weren't acceptable either.
Something softened my heart while I talked to Gabriel and comforted him. I looked at the other mother and she looked overwhelmed herself. I never saw her smile. Her expression was tense.
What she did was wrong but I don't know what is going on in her world. I decided to write a short letter to her in the hopes that she will learn another way to express her grievances. I am unsure if it will be received well but I can only try to reach out to her.

Thank you for voicing your concern regarding an incident that involving our children. I appreciate that you took time to talk to me. I am always available to discuss autism and how it affects my children. I can be reached at 407-764-8585. Please consider discussing issues with me without the children within ear's shot.

As you know, we both have to deal with autism and the issues it creates. We have added stressors as special needs parents. I hope we can work through these issues together and be on the same side. I believe it will make us all stronger. I look forward to discussing issues openly to create solutions.

A little background on Gabriel: He was in chronic, severe pain for a year. (or longer, we are unsure) This affected his behavior and impulse control. I sought specialists and begged for help. He had two brain surgeries this past summer and contracted bacterial meningitis. He was in the PICU for a span of five weeks. (my friend's daughter passed away from the same illness). It took months for him to return to his baseline.

Though this doesn't explain his behavior with your son in its entirety, I hope it sheds some light on what Gabriel has experienced. He has made incredible progress academically, behaviorally, and emotionally over the last six months.

We rarely experience aggressive behavior and we were upset that something occurred. (all I could imagine was another brain surgery and how your son felt) We addressed the situation at home. However, we do not know the antecedent and we were not at the school to witness it.

Thank you again for addressing your concerns.

Sincerely,

Jessica

Think Before You Speak (please)

I have two children with chronic medical conditions.  Their medical conditions affect them most days and it is at the forefront of our daily lives. Some days are more manageable than other days 

After our traumatic summer with Gabriel, we are now facing the same brain surgery for our little 8 year old son.  The ongoing stress and his issues from his medical conditions is a driving force in our lives.  

His behavior and focus are declining. His pain is evident.  He doesn't sleep well and cries often. He screams.  He has become a bigger challenge for his teacher   It is awful to watch and even worse to feel helpless as his parent. 

We continue to take him to specialists.  He tells his story to the specialists and almost begs the doctors to help him. He's 8.  Just 8 years old and suffers from chronic pain already.  We spend a lot of time figuring out medication and insurance coverage while finding the best doctors in our area. 

 I know that I have a few friends who can relate to this ongoing battle and trauma. I've been surprised by the kinds of comments I've heard from people and I'm unsure if they are well meaning or not.  The comments come across as insensitive yet I have to remember that at least these people are reaching out to me because some people don't reach out at all and that hurts   

One comment I heard was, "at least you know what to expect this time."  The positive side of this statement is yes, now I know what the surgery entails and what can go wrong. I also know the fear and anxiety. I also know that things can and do go wrong after surgery.  These complications can lead to fatality. It's a reality for us now, not a faraway possibility   I lived it and I don't want to jump back into the fire again. 

"You can plan better this time".  This was said by someone who didn't help us at all this past summer and that's fine.  However, this statement made me realize that she held what seemed like a lack of preparation against me.  I had less than two weeks to prepare for BRAIN surgery on my nine year old. A surgeon removed part of my son's skull and manipulated his brain. I was numb. I was paralyzed with fear.  Despite that, I think I organized and prepared well.   I think that I had amazing friends and relatives step forward to help us when four days in the hospital turned to five weeks.  No amount of preparation is ever enough for an unexpected five week stay at the hospital with a child that is full of unknowns and crisis 

"My child was in the NICU so I understand what you went through. " Lane was also in the NICU for 29 days (crazy, two of our children were in the hospital for a month). While the fear and anxiety of the two experiences are the same, nothing else is similar.  Newborns don't remember details.  Newborns can't talk about their experience.   They don't beg you to take them home.  Newborns can be left at the hospital overnight, even if it feels like you've left your right arm behind. Most newborns don't scream bloody murder when you take them back to the hospital because they don't remember their experience in its entirety.  My son with autism couldn't be left alone.  We couldn't leave his side.  It takes an enormous toll on a family. 

I know that the majority of people can not relate to our adventures and I am glad. I'm thankful this is not the norm.  I wouldn't wish these fears on anyone.   Please take a moment to think through comments said to a family who deals with chronic medical conditions.  Sometimes a well thought out comment can go a long way in supporting a family who is hanging by a thread daily.  

100 Days

Happy 100 days of school! We made shirts with thumb prints.  They said, " thumbs up! I'm 100 days smarter!"  

They had fun making their shirts.  

Un~relatable

 I'm sure many people dealing with chronic illness or trauma can relate to my unrelatable feeling.  The more I'm around a group of people, the less I feel like I can relate to anyone. I'm positive that it's due to the constant stress of chronic illness in our household. 

Recently I joined a group of friends for a fun adventure.  As they chatted about wristlets, I could not connect.  My world is full of acronyms and enormous Latin based medical terms.  I live in a world complicated by insurance battles, pediatric specialists, and ongoing educational wars.  These are things that the average person doesn't deal with every day, day in and day out. 

I've learned to put on that mask with the fake smile.  My head nods when I answer questions and state that everything is fine.  It's just fine because people don't want to hear about how my sons skull was removed surgically.  Or how I'm paralyzed with fear on a daily basis now that a second son faces the same surgery our first son had this summer.  

People don't want to hear about how I have to figure out how to get the boys into physical therapy and how to prove that therapy is educationally necessary. It would be awkward to remove my feet from the surface so I simply say that we are fine. 

We aren't fine at all.  I have a difficult time relating to a regular world with normal stressors.   I can be surrounded by people or those who are my friends and yet feel all alone. I am drowning in solitude when I keep my feet on the surface. 

I also don't want to bother anyone with our ongoing trauma.  It's difficult to be friends with someone who experiences ongoing trauma.  We are needy.  We can't give back much to other people.  It isn't that we aren't interested, we are tapped out.  We can barely see beyond our day, let alone make a committed plan with a friend.  

There it is - what it's like to be an unrelatable    We are here and we are screaming silently.  Love us.  Relate to us. But instead we will nod and say we are fine because even in our solitude, we want our friends 

Literacy Week - Character Day

Last week was literacy week.  The kids school had a character costume day to celebrate at the end of the week. 

All week Gabriel asked to dress up as Molly mouse. I found mouse ears, which ended up being more challenging than I expected given that we live in the land of the Mouse.  I found two Molly books at the library and set out an outfit.  

Thursday arrived and he decided to be a Minecraft guy instead.  Apparently his classmates made masks and it's more fun to be apart of something as a group. It was a big step for Gabriel to want to participate with his friends  

The mouse outfit was put away and he transformed into a Minecraft character. 

Lane knew right away that she wanted to be a princess. She found her book and happily wore her gown.  The kindergarten teachers also wore princess costumes. 

The third grade teachers dressed up as nonfiction characters.  Alex's teacher suggested Albert Einstein for Alex. It was perfect!  

Alex and I read a book about Einstein.  We compared Edison and Einstein and learned about atoms. I think he was a fantastic Einstein. 

Megatron

On a recent trip to Universal,  (I know, my kids are delightfully lucky to go to theme parks on a whim)  the restaurants were very busy.  It seemed strange since it was 2 pm.  Andrew took the kids to the parade while I looked for food for all of us.  Hungry kids at a park isn't a fun adventure and we avoid it at all costs.

When Andrew walked around the corner, on his way back to me, he encountered the Transformers character meet and greet.  Lane froze.   She would not walk when she saw Megatron. 

 

Gabriel ran past Andrew toward the character section.  Gabriel kicked Megatron with all his might before two security guards whisked him away.  Andrew apologized profusely and realized Lane was still frozen and Alex had walked away. Poor Andrew was stuck gathering the scattered children in a crowded tourist area. 

Gabriel had a slight meltdown before we ate lunch. His lovely mood had turned to tears and busts of yelling about the injustices of the world.  (Sigh, insert his much I hate autism here). 

Andrew explained the character situation to me.  During the conversation, Gabriel told us that he kicked Megatron to protect his sister!  Oh my goodness, hoe could we stayed frustrated with that reasoning and logic.  Since the boys were little, he's told them it's their job to protect their sister.  They are listening!