Halloween

Here they are...
SuperGirl and Thomas the Tank!

Rough night but OK

I received a call from my sister this morning - she beat me to the punch and had called the hospital to check in on Mom. They told her all was well, and that she had completed her first round of physical therapy.

I spent the rest of the day happy for her and relieved. I ran into a few friends of hers and relayed the good news.

After a day of running the kids to school, haircuts, doctors, etc I went up to the hospital to visit. When I arrived, Mom looked good.

I asked her how she was - she then told me that she had a really rough night. Her blood pressure fell dangerously low, and she couldn't stop shivering. They took her of all pain meds. As a result, her blood pressure normalized, however, she was in some serious pain.

I wonder what the nurse was thinking when she spoke with my sister earlier in the morning. My sister had not checked in the rest of the day and was under the same assumptions that I was - that Mom was doing great.

Mom has changed her tune considerably regarding what she wants to do. When initially discussing her after-surgery care, Mom indicated that she wanted the hospital stay and then a rehab facility. Well, when she realized that the cable broadcasting didn't include Fox News or HGTV, she quickly decided she wants to go home. What kind of place that services old people in upstate New York doesn't have Fox News? And there is no VCR either or video hookups on the TV - so I cannot videotape her shows and bring them up. When you are stuck in bed all day for several days on end, you need TV that you like.

They had her out of bed twice today, tomorrow a little more. She is back on some medication for pain, but I have no idea what it was. The nurse didn't stop in while I was there - my reputation must proceed me.

Here's hoping that tomorrow might be a better day for her.

Mom's Surgery

Mom is under the knife as I write this. Sisters and brother are all up at the hospital while I attend to nuttiness in our household. The doctors decided on doing an epidural with goofy pills instead of putting her under. In addition, they have givrn her Nexium the past few weeks and another anti-nausea drug today to ward of the problems she has had in the past with anesthesia. I am really hoping this helps.

The cancer has been the least of my mother's pain this past year - where as the her leg/hip/joint pain has been remarkably worse rendering her unable to drive and having to use two canes to walk. I do hope this hip replacement will do the trick. I am worried that it is not the true cause of her pain.

She is having the surgery even though she has lung cancer - however, she currently is cancer free. Her lung capacity is much improved - with a resting capacity as high as 96%! Still, surgery is risky, surgery and being 77 riskier, surgery and mega medications adds something,let's not forget her COPD and astham, and of course surgery and cancer.

She was not nervous and the staff, from the report my sister gave, has been terrific.

OK this just in - she is out of surgery. Things went as expected. I will go up to see her after ballet tonight.

Loss

Just found out that a former coworker lost a son a week ago, age 5. My heart is so heavy for this family.

Their son had contracted H1N1 - although initial tests didn't show it. He ended up with pneumonia. The child had asthma - but not severe. They are still awaitng autopsy results to indicate the actual cause of death.

Before they moved from Syracuse, they gave us the little jungle gym above. I went outside and noticed the leaves had fallen off most of the trees in our backyard. The view looked so sad to me. I wonder how they will get through these times. They havd an older daughter in second grade I believe.

There are some hurts you never get over, you have to learn to live with them. Are there people out there that don't have to go through these sorts of things? Indeed, growing up, we never had these issues - there were no disabilities in our family, no children dying. My parents were grateful for things, and they gave back to the community. They tried to express how lucky we were to us, but I am afraid I frequently did not understand. My mother would recall that her grandmother had lost children to disease, etc. People go on. They act like things are normal, they have to for the sake of the others.

Feeling pain in life comes in various degrees, from discomfort to unbearable. After having children, I can tell you that things I once found unbearable, are now merely uncomfortable. Anything involving my child is overwhelmingly difficult to bear. The thought of losing my children is unfathomable beyond my comprehension of pain. I know that Zach's disability alone is difficult for me.

I know I still struggle with the grief of Zach's disability. I dropped him off to school today, and they had disco music playing. He loves music. While watching him dance, it should have brought me joy. I am afraid it actually made me sad. He rocked back and forth from one leg to the other, clearly looking like a kid with autism. I recalled a year and a half ago being in church as the organ played the "Our Father" and everyone giggling as Zach not only got the beat, but moved his little tush like an Elvis impersonator. Anytime Zach heard music he would bust a move. Now he rocks back and forth. It's quite different. I wish I could quit thinking of "What might have been".

I recently saw a story about a central New York mother who actually adopted 8 children, most of them with disabilities. She chose to have disabled children. Mother of 8 - Inspirational This is an exceptional person. I know my grief is selfish. Most of the time it is because I feel so incompetent in handling the overall situation. This woman has taken on so much, she is so important to these children and to the community at large. I hope she realizes that. I thank her for her inspiration in my own situation.

Zach is here with me, and Sophia is too. We will enjoy life. Events in life such as a child's death should make those great times just that bit sweeter.

In the meantime, I will pray for his family. I will pray for Zach. I will do my best to be sensitive to others who may be going through the most tremendous losses there can be, of their children, whether in death or disability.

Where is he? Who is he?

I want someone to tell me where he is going to be.  I want to believe all the mothers who tell me that he will be talking up a storm in a year's time.  I want to believe he will call me Mom, maybe even tell me he loves me.

I don't know if I am giving up or accepting reality, but we have decided to scale back Zach's programs.  Since transitioning into school, he appears to have lost some skills.  I want to know why.  There are medical tests, there are therapists, there are psychologists, all these people who are experts, but no one who can tell us what to expect.  We can only look at what is going on.

There are no promises in any of this.  The therapy type we have chosen had a 47% recovery rate in a major study many moons ago.  Assuming identical conditions which we don't have,  that still leaves 53% of no recovery.  In the initial study some of the children were forever non-verbal and non-communicative. 

The fact is throughout all of this, we have been beating ourselves up for the errors we know there are between this research that showed such positive outcomes, and our therapy choices and environment for Zach.  Getting everything right seems close to impossible - there isn't enough money or people to help us achieve the perfect scenario.  We feel bad for not trying every possible treatment that we have heard about.  We feel bad about taking time for ourselves to do something like go for a run or watch a half hour of TV.  We feel that somehow in all of this, it is our failings that have been creating the lack of progress in Zachary's development. 

Perhaps he will be who he is, and we are supposed to accept that, without thinking we can contribute to his successes.  Is it our egos getting in the way?  Our feelings of helplessness since no one, especially the "experts" can give us any idea of what to expect? 

Every now and again when I find myself exasperated with where he is at - I try and take a deep breath, and take a moment to just enjoy him, smile at him, make him giggle, hold him.  I then go off to my laptop at some later time, write down a brief summation of what is going on, share it with you all, and cry.  I want to accept and love Zachary for who he is, my sweet sweet boy, but I just cannot replace the longing in my heart to have him show some notable progress, and we are just not getting that right now.  This isn't about him saying my name, I know he knows who I am.  This isn't about his saying "I love you", I know he does with every cuddle he gives me and those long passionate kisses of his!  I just want to have the joy of seeing him develop, even if it is in his own way, and I don't feel like we have that right now.  I don't care if he is slower than the other kids.  I got over that a long time ago.  I don't care if he even keeps up with the other kids with autism right now.  I just want to see some glimmer of light that he is on a path to somewhere.  I would love to have someone tell me he is going to progress- and in all honesty, we have a lot of people who do tell us that (chiropractors, therapists, homeopaths, other parents) but I don't believe them.  In some of these cases, they are likely trying to give us hope, perhaps in others they are trying to sell their wares.

I pray that the longing in my heart to hear him functionally speak go away if that is not what is meant to be.  I pray that every time I see a child his age, or younger, effectively communicate with their parent, that I don't feel a nauseous feeling in my stomach.  

There are experts, there are specialists, there are researchers.  And no one has any answers.  No one can predict what he will be able to do.

The longing in my heart brings me back to a different time in my life.  I was freshly 30, had lost my father the year prior, and when looking back at a decade of non-stop boyfriends, I realized that I was wasting my life chasing after something that I shouldn't.  I prayed with a friend and asked God that if I was not intended to be married, and in a committed relationship, that he take the longing in my heart away.  Within a few weeks, for the first time ever in my life, I broke up with my boyfriend while still having very strong feelings, but realizing the toxicity of the relationship.  It was the first time in my life that I felt secure by myself and confident that life was OK without having a partner.  I felt so empowered by my new sense of self, that I went and purchased luggage and had it monogrammed.  Well, like the jokester He is, a few months later, I met Steve.  A few months after that Steve and I were dating. And a year after that we were married.  And now I have a complete set of Eddie Bauer luggage with the wrong monogram on it.  That luggage has navigated its way through the United States, Canada, France, England, Switzerland, Belgium, Poland, and Germany.  Who cares about the monogram.

I wonder what tricks God has up his sleeve with Zach.  Will I realize that he is who he is, and that my love for him is enough?  Should I accept that he has autism, and that he will be who he is, regardless of intervention?  Do I continue to pursue the details of this disorder and how they pertain to him?  Do I continue to fight the insurance companies, school districts, and others who refuse to pay for diagnosis and treatments?  

Where is he on this journey?  Will he ever be able to tell me how he feels?  Could he be a dentist one day?

I pray that this new perspective on his therapy give us that pinpoint of light we so desperately want to see.

Up All Night

When I was single, the phrase "up all night" indicated a night filled with adventure, partying, or romance.  At age 39, with 2 kids, and the special needs stuff, well, the phrase "up all night" takes on a whole new meaning, and none of it particularly fun.

Yesterday was a typical day of perpetual motion.  Most of the perpetual motion was taking Zach to school ( a 25 minute drive) coming back to Camillus, and back off to the east to take Mom to her doctors appointment.  This doctor's appointment was to see if the pulmonologist would clear Mom for her upcoming hip replacement surgery.  That appointment took 2 hours - we discussed the current state of Mom's cancer, and they did in fact clear her.  Gotta love the case management of the medical field - the office had her down for having surgery for November 30th - her actual surgery date is October 27th.  It's non-stop, correcting these sort of mistakes between the pulmonologist, cardiologist, dermatologist, oncologist, radiologist, and surgeons.  Electronic record keeping would really be great for this of course - but there are big issues regarding privacy and HIPAA laws, standards, and security.  Companies with the appropriate background to make this happen all want to make big money off of it, creating proprietary hardware/software/middleware thus I don't expect to see it happen anytime soon. This is not a technology problem - our government and several of its agencies, particularly the military,  have been creating secure networks and applications for decades.  Greed always gets in the way.

Anyhow, good news that Mom's cancer is still at bay for now, and she is doing OK with her COPD.  The pulmonologist recommended Mom get the flu shot before surgery, and ten minutes prior to this statement, the office ran out of the vaccine.  They sent us off to the downtown office for her to get it there and that we did after picking up Zach from school. Add 45 minutes of extra time to the schedule.  Oh well.   Thumbs up for surgery, and now let's pray that she manages to bounce back from the surgery quickly and that it actually takes care of the pain she has been in for the past year.

Some of the perpetual motion from yesterday  was because I had committed Sophia to a ballet class - and we needed to find her attire: leotard, tights, ballet shoes, tap shoes. Wal-Mart came in particularly handy with the leotard business, however, we ended up having to drive around for the ballet shoes.  But alas, she was fitted head to toe in pink and looked as sweet as a pea.  Straight from the ballet shoe store we went off to class.

Of course, no where I go these days can allow me to escape autism.  While in the class, in walks a mom with her daughter that I quickly recognized.  Karla works at my former employer, and we quickly began chatting about all that was up.  After hearing me talk to her about Zach and some of the other families we have met, a woman who was listening to our conversation chimed in and told us she was a special education teacher in our school district.  She then went on to to tell me she has a 3 year old with autism.  I was a little confused by the end of the conversation because her son is verbal, gestures, doesn't have behavioral or major sensory issues.  In fact, they have not pursued a diagnosis.  He is getting some services and she works with him.   She has more background than me being a special ed teacher, but I was still perplexed by the fact that she didn't pursue formal diagnosis if he did indeed have autism.  Perhaps after seeing years of children with special needs and how the system works, she realizes the pitfalls to diagnosis.  

As well as not being  able to avoid autism, we also cannot seem to avoid chaos.  As I packed Sophia in the car in her cute little pink outfit, I slammed the door shut and saw the look on Sophie's face.  You got it - her hand was in between the car and the car door.  Off I went driving 70 miles an hour home to get an ice pack.  Her hand looked fine, I called the triage at the pediatrician's office, and they said it was likely soft tissue damage based on what I described.  Anti-inflammatories and keeping an eye on it were all they recommended. 

After the great mashed hand incident of 2009, I managed to get the kids into pajamas and to bed.  Eventually,  I fell asleep alongside them, until, 1 am.  I woke up to Zach staring me in the face.  He didn't look happy.  He could not sleep.  He wasn't fooling around, he just could not sleep.  I felt bad for him because it really did not come off as him doing it on purpose.  I changed his diaper, rubbed his back, snuggled with him.  He finally fell back asleep at around 5ish.

I have a cold that feels as it may be turning into a sinus infection, little sleep, and a meeting where I will be a speaker this afternoon, driving cross town twice a day for Zach's school, driving the other way across town to take Zach to a doctor's appointment, plus afternoon therapy - another perpetual motion day here at the Morphet home all to be culminated by the irony of no sleep - tomorrow is Zach's next sleep deprived EEG.  That's right folks, we will be purposely keeping Zach up tonight for his test tomorrow. 

Yesterday was Steve and my 8th wedding anniversary.  Now that I think about it, it was filled with adventure (trying to get Sophia's ballet gear), partying ( Sophia, Zach and I played computer games for an hour and a half together), and romance (I was snuggled and kissed many times last night).  All this fun without Steve who is out of town on business.  What is all the whining about?

Dinner at the Morphet's House

Dinner at our house usually consists of one meal for adults, one meal for sensory daughter who accepts only certain things, and another meal for autistic son on the GFCF diet.  And there are traditionally only 4 of us.  For those who are rolling their eyes, and thinking "Not in my house."  I ask you to kindly come over and try Sophia out for size some time.

I don't let her eat junk (at least not a lot) but her variety is very limited.  And eating only what she wants would bore me quite a bit - meatballs and various pastas, mac n cheese, french fries, PB & J, pizza, grilled cheese, chicken strips or nuggets, ham, bacon, eggs, mashed potatoes, yogurt, British beans, nuts of all types (raw and roasted), raisins, bread, waffles, pancakes, carrot sticks, OJ, cranberry juice, tomato juice, milk, water and the occasional celery, apple, raspberries, bananas, strawberries, watermelon, cantaloupe, and orange.  Needless to say I sneak some veggies into her via sweet treats like pumpkin muffins, zucchini bread, squash rolls, spinach brownies.  I use alternative flours that add some nutritional variety like brown rice, quinoa, garbanzo bean, fava bean, tapioca.  She takes a multivitiamin, probiotics, and fish oil supplement (Omega 3/6 blend).  We don't drink soda (diet or regular), we make a lot of our sweet treats from scratch - including homemade ice cream, cookies, cakes, cupcakes, puddings The kids consider hot air popcorn a big treat.  We try and limit the candy in the house - although we all like it!  We just made homemade rock candy with grape juice.  Although I would like her to eat more variety, nutritionally she is OK. 

I am pretty much used to the whole short order cook thing.  Life is not simple this way - but we don't get too aggravated since we are sort of foodie/health food types and have enjoyed cooking from scratch since we met.  I can recall dying Easter eggs using various things in the kitchen - and that was before we had kids - I thought it was so much fun.  I might not have the neon eggs others have from buying their Paas kits - but I like my eggs nonetheless.

Besides our goofy food situation, dinner is never quiet or without incident around here.  Usually Sophia is saying something interesting.  Last night I got the line:

Don't worry Momma, your pants are going to save you.

What does this mean?  I have no clue.  They don't always make sense, but they almost always are amusing.

As for dinner tonight?  Well, it was pretty much calm, all were eating acceptably. And then Zach let out a totally unexpected squelchy and scary scream.  Sophia then let out her own shriek and ducked under the table like a PTSD war vet thinking there was incoming and running for cover.  She sat quivering under the table for 5 minutes while I determined that Zach likely either accidentally bit his tongue, lip or finger.  Sure wish we could teach him to say "Ouch."  As Sophia calmed herself and told me she was OK, I just had to laugh aloud.  One kid's issues impacting the other kid and their issues; it was definitely like some sort of skit.  I wondered how many people have dinners like we do.  No wonder why we don't get a lot of company for dinner these days.

** Pictures from this past weekend at Critz Farms autism event.