A Conversation With My Daughter

Do you ever have one of those conversations that just rip out your heart?  Last night, Mya and I talked, and I was slowly dying inside.  My heart ached for her, and I wanted so much to grab her up, and never let her go.  But, as you know, Mya won’t allow it. 

 When we have our “heart to hearts”, I have to be very careful, and not push anything.  If I ask too many questions, she will shut down, and the conversation is over.  I tread carefully, act casually, and hope to get a peek into her thoughts.

 Last night, I was successful, and it killed me inside.

 I had discovered earlier, that she had found a thumb tack at school, and used it on her hand.  At first she wouldn’t show me her hand.  She thought I was going to be mad, or disappointed in her.  After convincing her I was concerned, and needed to see, in case it needed to be cleaned and bandaged, she showed me.  As always, when she shows me her wounds, she looks at me and says, “I can’t help it, Momma”.  I know she can’t help it.  I told her we need to figure out a way to redirect.

 Our bedtime talk went like this:

 Me:  we really need to figure out a way to redirect, so that you have something with you, you can chew, or pick, instead of doing it to your body.  The problem is, we need to find something you can take to school with you, that won’t be a distraction, and cause you not to listen to the teacher.

Mya:  I know if I had something at school, I’m not going to listen. 

Me:  I know.  That’s why I need to think really hard about what we can use.

Mya:  I can’t help it, Momma.  I’m not perfect.

Me:  I know you can’t help it, and I don’t expect you to be perfect.  We all have flaws, and make mistakes.  No one is perfect.  That’s what makes us all unique.  I’m not perfect, and I would never expect you to be.

Mya:  I’m not unique.  I’m like Graci.  We both love dogs, we both have brown hair….

Me:  Yes, but Graci has brown eyes.

Mya:  I do too.

Me:  You do not.

Mya:  I can make mine turn brown.

Me:  You can’t make your eyes change colors.  we giggled

Mya:  What is special about me?

Me:  You’re very smart, you’re funny, and you’re full of energy.  It’s our uniqueness that makes people want to be around us, and be our friends.  If everyone was the same, it would be boring.  It’s much better to be who you are, than try to pretend to be someone else.

Mya:  I pretend I’m someone else, at school, all the time.

Me:  Why?  (I couldn’t help but ask why, but I know never to ask that question!)

Mya:  Because I don’t like who I am.

Me:  Why don’t you like who you are?

Mya:  I don’t know, but I don’t.  Can we go to sleep now?

 

Oh, how I wanted to ask so many more questions.  I know, when she’s finished talking, asking more questions only leads to frustration, and anger, on her part, so I didn’t push.

 I lay awake at night and think about her, and all she goes through.  I want to help her.  I crave to hug her tight and comfort her.

 This week has been a rough week for her.  We’ve had to bandage almost every day.  She comes home from school, completely exhausted.  Her lunch is hardly eaten, and she’s not hungry for dinner.

Just a glimpse into what I see most days.

 From the thumbtack she found at school:

 

 

 

Thankfully, this one was mild, compared to the time she used a lapel pin.  Nonetheless, it hurts to see your child hurting inside.

 She explained to me, when she did this, she had a really hard time picking off the little pices of skin sticking up, that’s why there’s still some left on there.

 I asked her if her teacher sees her do this.  She said, I think sometimes she peeks, and sees me.  Like today, I think she peeked and saw me, so I hid my hand under my desk real quick.  If she sees me, she will send me to the nurse, and I DO NOT want to go to the nurse, she’s mean.  She also added, sometimes I pick, and it bleeds, and my friends see it, and I tell them not to tell the teacher, but they do it anyway.

Several things to notice in this one.  First, notice the fingernails chewed off.  That’s the norm for her.  Second, notice the “tall man” fingertip being chewed.  And of course, the obvious one, the chewed place on her hand.

 

 

Here, she’s chewed the tip of her thumb.

 

 

 

These were all taken this week.  When she chews, she chews down far enough, she bleeds, and the places stay sore for several days.

 

This might explain why she's been exhausted this week.  The anxiety has surely been high.

 

We get by, and take it one day at a time.  I just hope, in the near future, we figure out something and move past this. 

 

 

Into Her Head

Into Her Head
Living with Anxiety and OCD

Imagine not sleeping at night. Dreams haunt your sleep, you reach out constantly for reassurance you’re not alone.




I don’t want to die.




Imagine waking up each morning, dreading the idea of facing the day ahead of you. The people, the noise, the chaos.






I don’t want the world to burn in fire.



Imagine being afraid of what people are thinking of you. Why are they laughing, are they making fun of me? I can’t choose this outfit, someone might think I’m a boy. Or maybe they will think I’m too prissy. What if they think I’m not good enough? What if they think I’m a bad person? Why are they looking at me? How can I hide? I need to change the way I behave so I am more like them. Or, maybe if I act like someone or something completely different, they won’t see me.




I want to live forever.


Imagine you are not worthy of love. You won’t let anyone close to you. You won’t accept love and friendship from others. Never let them see you.




But, what if I die.




Imagine being in a crowd of people, scared someone will touch you, talk to you, or look at you.



I’m never good at anything.



Imagine wanting to speak, but your mind won’t allow your lips to move. You’re frozen.



I hate my life.


Imagine your every move is being monitored, and judged. All eyes are on you, and your actions. What if you say the wrong thing? What if you behave in a way that’s not appropriate for the situation? What if they don’t like you?



Do you think I’m weird?




Why am I different?


Now, imagine your 9 years old. You’re not able to understand, let alone deal, with these thoughts and emotions.





Mental health issues in children are very real. Anxiety and OCD are very real.

It has taken us years of pushing doctors, teachers, and mental health professionals, to get her tested, and to get a diagnosis.

Mya knows how to camouflage herself, and will go into role play so she can fit in with her peers. No one knows the internal struggles because she’s learned to hide it well. Except when it comes out, as shown in the pictures above.

We decided to medicate a year or so ago. That was one of the most difficult decisions we’ve ever had to make.

My recent discussions with the doctor involved the use of Benadryl to calm her, and help her sleep. I’ve bought the Benadryl, but I can’t bring myself to give it to her.

When I was buying the Benadryl, I also had to buy more Band-Aids. It all hit me like a truck. Instead of buying my daughter Hello Kitty lip gloss, or nail polish, I’m buying her Benadryl to calm her so she can sleep, and Band-Aids to cover her self-inflicted wounds.

Most kids love to be hugged and snuggled. Our daughter doesn’t want to be touched or comforted.

Most kids jump right in during a party or play date. Our daughter only chooses to play with the ones that know the real her. No outsiders are allowed in.

Mya is quite the chameleon. She observes her surroundings, and adapts. But that’s not the real Mya.

The real Mya is smart, talented, beautiful, and funny. Her smile can light the night. But you won’t see that, unless you’ve been invited into her world. Into her way of thinking. Into her head.

You Should Really Stay Away From Google

When I took Mya to the doctor last week, that’s what he told me. I get it. There are people (you know who you are) that can Google something small and suddenly feel like they have the black plague, and will die at any moment. When I Google, I try my very best to do it with an open mind.

I’ve spent the past 5 years Googling more things than any parent should ever have to Google. Why? Because no one else can answer my questions. Why? Because they don’t see it, and no one will listen to me.

I kindly told the doctor that I will continue to use Google to find the answers I’m searching for. In my opinion, information is knowledge.

When I received the letter from the Weisskopf Center that showed their latest findings, after spending 30 minutes with Mya, there were words listed I had never heard. What did I do? I Googled them. What did I learn? The lady that did the evaluation didn’t hear one word I was saying. It’s in these times where information is knowledge. Now that these 3 items are on Mya’s record, when I take her to the doctor, or to see therapists, I can explain to them, this is not what’s happening. This is not the problem at all.

I’ve Googled every little thing I can think of, and I’ve Googled behavior combinations. I also observe those around me, and this isn’t my first child, so I know when something isn’t quite right. I know which behaviors should have stopped years ago, which behaviors demand attention from a professional, and which behaviors are typical in a 9 year old.

Google can be a great thing for someone searching for answers, and the appropriate place to have concerns addressed.

If only someone would listen. If only someone would open their eyes and see.

I’m very thankful our family doctor was able to see the real Mya, and not the girl she portrays when in a tense situation. Had he not seen it, we wouldn’t be as far along as we are today.

I’m sure, now what we’re seeing a new therapist, I will get more information to Google. Like OCD, the latest to be added to her diagnosis.

I’ve only Googled OCD one time, and to be honest, when the doctor was explaining certain behaviors, it made sense, but the things I’ve found online haven’t been so clear.

When I’m faced with these things, I know then, it’s time to ask the doctor, or therapist. That’s when I stop “Googling”, and seek the advice of a professional.

See, I can Google responsibly!

Not So Perfect

This is Mya. Mya will soon turn 9, and has asked for motorcycles, dragons, Pokemon toys, and Transformers for her birthday. Mya loves to play with Paw Patrol toys, but has a fascinating interest, and love, for her dragons. Mya is my not so perfect, super smart, silly, artistic daughter. I was going to use the term imperfect, but that means defective, and she is not defective, she just lives her life differently than you and me. In a nut shell, we think she’s pretty awesome, and couldn’t love her more.

In the past 5 years, I’ve noticed Mya is “different”, and put it off that she is being raised by maternally aged parents (yes, that’s what they call it), and was used to being around adults, more than her peers. I thought it would get better when she started Kindergarten. I thought 1st grade would be better, 2nd grade was a complete nightmare, and now that 3rd grade is coming to an end, Mya has a deep dislike of school, and anything educational. In the school testing, she scored superior in reading, and I was told she reads on a high school level. I struggle every night to get her to read for her reading log. She has no interest. We’ve bought book after book, hoping to find something that would peak her interest in reading. Nothing. Give her a picture book, and she will look at pictures all day, but don’t ask her to read anything. Instead of forcing her to read 20 minutes each night, and making her dislike reading more than she already does, I let her choose her childrens books for her reading log.

Mya thinks she has the soul of a dog. She plays like a dog most of the time. She has begged us to buy her a dog bone, and collar. I discovered one day she had hidden dog treats in her room. The treats hadn’t been bitten, but I don’t guarantee they weren’t licked. When she was 5, I put this off as imaginative play. She will be 9 in a month, and acts more like a dog now than she did when she was five. She will lick herself to “clean” her arm, or to “soothe” something that may hurt. She will crawl all over the yard, playing like a dog, even rooting her nose in the ground as if she’s sniffing and digging.

Mya has officially been diagnosed with general and social anxiety. A little over a year ago we started her on medication for the anxiety. The medication has helped the general anxiety tremendously. We no longer lay awake at night worrying about Every. Little. Thing. We no longer answer a million “but what if” questions. We no longer have nightmares. It has truly helped the anxiety. I hesitated to use medication, but it started to affect her health. Her hair started falling out. She lost 13 pounds. She slept A LOT. At that point in time, I had no other choice.

I’ve asked doctors for years to help me. I’ve told them all the things that were concerning. Everyone had the same answer. She seems fine to me. Every year, we get more, new behaviors to add to the growing list. Self-harm, hoarding, pulling her eyelashes, to name a few. Again, she’s fine. Or, it’s the anxiety.

I’m at a loss. If the medication helped the anxiety so much, why are we still seeing all these behaviors? Why does she not have friends, or work to maintain a friendship? The one girl she calls her friend is mean to her, and Mya thinks that is okay. It’s not! Why does she decide to become mute when someone speaks to her? Why is she fidgeting in class? Why is she scared of the vacuum cleaner? Why does she not like hugs, or affection? Why does she act like a 5 year old, instead of a soon to be 9 year old? Why can’t she tie her shoes, ride a bike, button her pants? Why? Why? Why? No one will answer my questions. Do you know why? Because when Mya is one on one, she sits quietly and politely answers questions. She’s not swinging from the ceiling, acting like a beast. She makes the honor roll. She’s the perfect student, so no one pay attention. Because the school doesn’t see it, and the psychologists rely heavily on the schools input, I get nowhere.

I have secretly suspected Aspergers for a couple of years now. When I would search Aspergers, and read the traits, it just didn’t fit. I recently found an article telling how researchers are finding that girls exhibit different traits. I searched traits in girls. I was convinced this is what we’re dealing with. When we recently had her evaluated, I showed the lady the traits, and was immediately told “we no longer diagnose Aspergers”. I knew that, but exhibiting the traits puts her somewhere on the spectrum. “Since Mya can carry a conversation, she’s not on the spectrum”. It’s all anxiety. This was determined after meeting with Mya for 30 minutes. I was so disappointed. Another school year gone, and we’re no further along than we were when I started questioning 5 years ago. Here’s a few things from the Aspergers article:

Girls often use constructive coping and adjustment strategies to effectively camouflage their confusion in social situations and may achieve superficial social success by imitating others or avoiding engagement in interpersonal situations. A girl with AS can become an avid observer of other children and intellectually determine what to do in social situations: learning to imitate other girls, adopting an alternative persona, and acting as someone who can succeed in social situations (in effect becoming a social chameleon). They constructively avoid social interactions with other children, choosing instead to engage in creative solitary play, read fiction, or spend time with animals.

There can be aspects of sensory sensitivity, especially tactile and auditory sensitivity, resistance to change.

Parents notice that their daughter may not identify or want to play cooperatively with her female peers. She may consider that the play of other girls is beneath her—boring and inexplicable—and prefer to play alone so that she can do things her own way. Her interests can be different from those of other girls

She may prefer nongender specific toys such as Lego or playing with toys associated with boys, such as construction sets and vehicles.

Since it is inevitable that there will be times when she has to engage with other children, the girl with AS may well prefer to play with boys, whose play is more constructive and adventurous rather than emotional and conversational. Many girls who have AS have described to psychologists and in autobiographies how they sometimes think they have a male rather than a female brain, having a greater understanding and appreciation of the interests, thinking, and humor of boys. The girl may be described as a tomboy, eager to join in the activities and conversations of boys rather than that of girls

The adolescent girl with AS may not follow society’s expectations of femininity; for example, she may prefer to wear practical, comfortable, somewhat masculine clothing rather than dressing in a fashionable or feminine way.

During their adolescence some girls with AS are known at school for their good behavior. A strategy often used is to be extremely well behaved and compliant in class so as not to be noticed or recognized as different by the teacher.

However, the girl with AS increasingly recognizes her own social confusion and frequent faux pas. She may react by trying to stay on the periphery of social situations (to not be noticed in a group) so that others remain unaware of her social confusion. She may develop a pathological fear of making a social mistake, and intense performance anxiety in social situations with peers can lead to selective mutism, an inability to speak when talking is expected.

A girl with AS may suffer her social confusion in silence and isolation on the playground yet be a very different person at home. The “mask” is removed, and she may use passive-aggressive behavior to control her family and social experiences—the opposite of the cooperative and compliant child at school. The confusion, tension, and suppressed emotions that occurred during the school day are released with some ferocity, such that she has almost two personalities: the meek school girl and the defiant, argumentative, and emotionally volatile daughter at home.

Imitation. Some girls with AS adapt to being different by engaging in imitation. The girl may identify someone who is socially successful and popular, either a peer or a character in a soap opera, and adopt that person’s persona by mimicking speech patterns, phrases, body language, and even clothing and interests. She becomes someone else—someone who would be accepted and not classified as different. She learns how to act in specific situations, a strategy so successful that people may not be aware that the social abilities were a performance achieved by intellect and imitation rather than intuition and inspiration.

Girls who have AS can be like chameleons, changing personas according to the situation, with no one knowing the genuine person. Often the girl believes that the real person must remain secret because she fears that person is defective and must never be revealed. However, this coping strategy leaves her exhausted, and like Cinderella at the ball at midnight, she cannot keep up the social charade indefinitely. When she returns home from school, she cannot tolerate any more social experiences—even with family members.

Imagination. Some girls with AS may not seek integration but instead escape into imagination. The girl might feel that if she cannot be successful with her peers, she can try to find an alternative world where she is valued and appreciated. She may identify with a fictional character such as Hermione Granger of the Harry Potter series, who faces adversity but has special powers and friends. If she feels lonely, then talking to imaginary friends can provide companionship, support, and comfort. Alternatively she may develop an interest in ancient civilizations to find an old world where she can feel at home. Or she might acquire a fascination with another country, such as Japan, where she might be accepted and among people of like mind. She may develop an intense interest in science fiction or in the fantasy worlds of fairies or mythology. Many typical children occasionally enjoy escaping into imagination, but for the girl with AS, the reasons are qualitatively different. This is not evidence of the potential to develop a psychosis but rather the fantasy world becomes a constructive means of avoiding (not distorting) reality and experiencing a relatively safe, successful, and alternative social life.

What I’ve listed here is the majority of the article. This is what we see and live every day.

It took a few visits to our family doctor before she became comfortable enough to be herself at his office. Until she shows her true self, you don’t see it, and you won’t understand. It’s there. Anyone that’s in her “comfort zone” sees it. Why can’t the professionals listen to what I’m telling them? It’s my daughter, and I know her more than anyone else.

One of the new things we’ve seen recently is unexplained bathroom accidents. Mya doesn’t realize she’s doing it. And I know one incident, she didn’t realize it, even after the fact. We recently had a sleep deprived EEG to rule out seizures. The EEG was normal. Again, one more unanswered question to add to the list.

My last hope is the appointment with the pediatric Neurologist. I hope we’re able to get some answers there. I’m not sure what the extent of diagnosis will be, but I’m hoping we get more than we currently have.

People don’t understand why I don’t just accept what is, and move on. I will tell you. Mya struggles, both inwardly and outwardly. Without a diagnosis, I can’t get her help. I can’t get her what she needs at school. I can’t get her what she needs as far as therapies to help with anxiety, the self-harm, the accidents. I can only continue to ask questions and hope someone will one day see what I see.

Our most recent “episode” with Mya happened at school, and I think it shocked us all. She threatened a girl in her class. The kind of threat the schools frown upon, and had she been in a larger school, say in Chicago, she would likely have been suspended. We dealt with it at home, and I gave the school permission to deal with it as they see fit. Of course, since this was the first time she’s ever been in trouble, she didn’t get in a lot of trouble. It will, however, go on her school record. It’s policy. I hope this was a one-time incident, and she’s learned her lesson. Time will tell.

My last meeting at the school was to implement a 504 plan, which would allow Mya certain accommodations. While I'm okay with it, most of the items listed, are listed “as needed”. If she gets a teacher that doesn’t want to bother, it worries me it won’t be needed. I worry we will have another year down the drain.

At what point do people stop, and look, and say, “so that’s why her grades are slipping”, or “that’s why she fidgets at her desk all day”. Why am I the only one seeing with my eyes open.

Wish us luck in finding help. We need it.

Signed,
Desperate Mom

All Aboard

I’m going off the rails on a crazy train…..

As you likely already know, Joe, my brother, isn’t doing well. He continues to lose weight, and every time I see him, he looks weaker and weaker.

I don’t think I’ve blogged about my brother. About 8 years ago he had a very large melanoma removed from the side of his head. He went through a partial chemo treatment, and then life happened. He didn’t finish his treatments. For the past couple of years, he’s not felt quite right, and made numerous trips to various doctors, hoping to find one that would run a PET scan and check for cancer. Last year he went to the Brown Cancer Center, supposedly one of the best in the Country, and they assured him if the melanoma had no returned by now, it wasn’t going to return. They sent him on his way, and told him he would be fine. This summer, he continued trying to get a doctor to listen, and actually do some tests to see what’s going on. It wasn’t until he got sick and went to the ER, thinking he had pneumonia, and got a chest X-ray, and a mass was found on his lung. That was a little over 2 months ago. Since then, we’ve learned that the cancer is Melanoma, it’s Stage IV, and it has spread to various bones, including 7 spots on the spine, his lymph nodes, and various other parts of his body.

Last week he went for a scan so he could be marked for radiation. They said it may be up to 2 weeks before he can start radiation. He goes to the cancer doctor this week to see if they’ve determined which chemo will respond best and help slow the progression. Here we are, over 2 months in, and nothing has been done. I see him gradually decline with each passing week. Sure, he has medication to help with the pain, but right now the best pain therapy would be radiation. While we’re all quite aware there’s so cure for Joe, and this can’t be fixed, we would like to see him live out the rest of his life as pain free as possible. So far, it’s not going so well. Why is everything so difficult?

On the other side, I’m still fighting to get Mya evaluated. I ended up scheduling a meeting with the Superintendent of the school system. It wasn’t until that meeting was scheduled that I finally received a call from the lady over the department that handles the evaluations. Why has it taken 6 months, and a meeting with the Super, to get someone to return my call? When I go for my meeting, I will make it very clear to him that there’s a major gap in the system that needs to be addressed.

I’ve been at this since Mya started Kindergarten, and things are not getting any better. Of course, the anxiety medication has made some major improvements in some areas, but there are other areas where we continue to struggle, and those are only getting worse.

While waiting for the school to call me back, I’ve also had her to the doctor, talked in depth about my concerns, and asked for another referral to the Weisskopf Center. I had to call the office again when I hadn’t heard anything from anyone. And then, when I happened to be in the office for blood work, I asked if she could look and see if anything had been done. Apparently it hadn’t. Go out another 2 to 3 weeks, and I’ve still not heard anything, I try my luck contacting the Weisskopf Center direct. It wasn’t until today that I finally learned her referral was received and processed yesterday. I should be receiving the packet that has to be completed and returned. Once they receive the packet, we will go on a waiting list. I asked about the wait time. 6 months. After 6 months of trying, I get to wait another 6 months.

My daughter is hurting herself, and I can’t get her help. My daughter has so many other things going on, but I can’t get anyone to hear me.

Why does a person have to scream from the rooftop to be heard?

Bob is having some issues that we’re trying to address. Tests ran, more to be done today. He goes for a follow up in 3 months. I’m quite shocked his doctor doesn’t want to see him sooner to go over the results in person. No, his doctor lets the nurse call you with the results. But, what if I have questions that the nurse can’t answer? I have to wait another 2 or 3 days to get the answers? Or, do I do the most logical thing and Google it? There’s fuel for the fire.

This is life we’re talking about. Not a broken bone that can be casted, but hard core serious life issues. Why do I feel like it’s not as important to those that can truly help?

So, this has been my mind clutter for the past 6 months. I think I should probably go ahead and make an appointment for that rubber room. With the paperwork, office visits and wait time I would likely face, I’ll be ready for it by the time the red tape has cleared. 

TTFN!

Mental Health

My Face Book newsfeed has exploded with news of Robin Williams’ suicide, and his struggles with drugs and depression. I am very saddened by the death of this wonderful comedian and actor. Robin Williams was one of kind. A true classic. I can’t imagine the sadness his family is feeling right now. My heart goes out to them.

I find it sad that it takes something like the death of a great comedian to bring a very serious illness to light. People have struggled with mental illness for years, but you rarely hear about it until it happens to someone that’s more “newsworthy”. Is Robin Williams’ life more valuable than Susie that lives down the street? Not in my eyes. Every life is valuable.

Mental illness has a very taboo reputation. You hear it on the news, but only when something tragic has happened as a result.

Why can’t we have mental health funding like we have cancer funding? Why can’t we show mental illness in a day to day environment, showing the people that are struggling, but still making it work. I’m sure there are millions that could represent those struggling with some form of mental illness.

My daughter suffers from a mental illness. General and Social Anxiety, or for short, GAD and SAD. It took me 4 years to get her diagnosed and on medication. Since the medication, she has improved tremendously. She still has her moments, and triggers, but now that she’s on medication, her hair isn’t falling out, as bad, and the weight she had lost is slowly gaining. I asked professionals for 4 years, is this normal? Do you see this? Do you notice these behaviors? No, no and no, she seems fine to me. It wasn’t until this past school year, one of her teachers opened up to me and told me she noticed the behaviors immediately. I asked her why no one would tell me in the past. Because sometimes the parents don’t want to hear the truth, and sometimes parents don’t see it themselves. But I was seeing it, AND asking about it. Still, no one wanted to get involved. I want to help my daughter, not look the other way or act like it’s non existent.

Now that I had a teacher that would confirm my concerns, it was time to talk to the doctor again. Let’s just wait and see if it gets better before we start meds. Okay. Then her hair started falling out, and she lost a lot of weight. The wait was over. Back to the doctor again. Get a referral to be evaluated. Wait a little longer for that appointment. Get a diagnosis. Back to the doctor for meds. Start therapy.

Why does the process have to be so long, and take so much time and effort? 4 years. She’s now 8 years old.

Because I’m only her mother, and not a doctor, I’m not qualified to make a judgement call that something isn’t quite right with my childs behavior?

Getting help is the hardest thing I’ve ever had to do. Family doctors can only prescribe meds, and refer you for evaluations. The people that evaluate, do just that, evaluate, and give their opinion on what they feel is the issue. Then you go to a therapist and spend countless visits learning nothing. When we were seeing the therapist, I would come away with more questions, and no answers.

Mya’s behaviors continue to be erratic. We don’t know what to expect from one day to the next. Do we have the help we need? No. Is the doctor helpful? Only for the meds. Is the therapist helpful? He wasn’t for us. Is the school helpful? Not at all. Where does that leave us? Needing help. Where do we go from here? I honestly don’t know.

Sensory Integration Disorder

We have more answers. During our last visit with the psychiatrist, Dr. U, he gave Bob and me an Asperger’s questionnaire to complete, separately. I completed mine at the office while he was talking with Mya, and Bob completed his at home. Neither of us knew what the other had listed for our answers, so it was an honest test that showed how we each view Mya and her behaviors. I had anxiously been waiting for our visit yesterday.

Based on what Bob and I answered, he doesn’t think she has Asperger’s, but he did say that one thing we both scored her very high on, was sensory. He believes she has Sensory Integration Disorder (SID). This could explain why she doesn’t like to be hugged; it could explain why she’s a picky eater. It could explain a lot of things.

What happens next? The school OT (occupational therapist) will evaluate her for sensory integration. He said using the school OT would likely be the quickest, least expensive way of having her tested. And, being done in the school system, it will give records that may be helpful in the future.

Since SID is a neurological disorder, she can do OT to help her overcome the sensory issues. He told me about a place, here in town, which comes highly recommended.

Also, he added, working on the SID may help with the anxiety. He gave the example: Imagine her being at school all day, worried to death that someone is going to touch her, or hug her, or maybe there will be a loud noise. For a kid that already has anxiety, this can be torture on a daily basis.

We talked about the meds. I had told him before that the first 2 weeks on meds were amazing. She was a completely different child. She actually went to the board, at school, twice in the first week. The third week, we took a nose dive. He explained that the dosage may need to increase. Again, I expressed my concerns about the meds, and wasn’t sure if being on meds is the right thing to do. He assured me the meds were a good thing to keep her anxiety at bay. Okay. We go this Friday to the family doc to see what he says about dosage. I’m still very nervous.

Since I started this post, and put it on the back burner, we have discontinued our visits with the therapist. We’re still waiting for the evaluation from the OT, and depending on what that shows, we will decide how to proceed from there. The medication dosage remains as it is. I told the pediatrician we would see how things go once school has started. So far, Mya is doing great, she loves her new teacher, and has come home in a good mood every day. I’m keeping my fingers crossed.

TTFN

At Last, We Have Answers!

Since Mya was about 4 years old, I knew something wasn’t quite right. She was unusually shy, and had quit showing affection toward me, and others. At first I fluffed it off as her being around adults, mostly, and not being comfortable in her peer group. I assumed it would get better when she started school. Kindergarten wasn’t better. 1st grade was horrible, and by 2nd grade, she started losing weight and her hair was falling out. Last year I mentioned my concerns to her doctor, and we just took the wait and see approach. This past fall, when her hair started falling out, the wait and see was over. I told the doctor I wanted her checked out, to rule out anything medical that might be causing the sudden hair and weight loss, and if everything came back okay, I wanted a referral to have her evaluated. Mya was down to 50 pounds, and her hair had thinned significantly. Finally, we had an appointment at the Weisskopf Center in Louisville.

Before our visit, I made a list of observations, explaining various behaviors I was seeing at home. Each year in school, I asked the teachers if they noticed anything odd, or out of the ordinary, only to be told Mya was a good kid, and got along well with others. Hmmm… There was a time I was beginning to wonder if maybe it was me. If I was seeing all these quirky behaviors, and the teachers weren’t, maybe it’s me. Well, this year, when I again mentioned it to her teachers, her all day teacher assured me she was fine. Her Math teacher, on the other hand, said she noticed it almost immediately. I spent a lot of time talking to her Math teacher, and when we prepared for the evaluation, it was the Math teachers input that I used for the “teacher questionnaire”. I received a packet from the Weisskopf Center, and there was a letter for me, instructing me to go online and complete a behavioral form, and there was a letter for her teacher, to do the same. Since I was getting zero information from her all day teacher, I decided to give the letter to her math teacher. When we went for the evaluation, the doctor told me the teacher and I were seeing the exact same behaviors. Not that I want anything to be wrong with my child, but I was so happy to hear those words. I had confirmation. I’m not crazy, or over protective. Then I became angry because had the teachers been honest with me in the past, we could have gotten her help sooner.

The day of the evaluation was long, and exhausting. I’m a talker, and I do believe I wore myself out talking that day. The doctor met with me first, and we talked about everything. Then she met with Mya, and then back with me again.

After talking to Mya, the doctor discovered that Mya has a very low body image, and would like to change many things about her appearance. She thinks she’s fat. Mya feels like she’s not good enough, and she feels she’s a bad person. My heart broke in two. The doctor was very concerned about Mya’s body image issues, not so much for now, but for in a few years, when puberty and body changes start to happen. This will have to be monitored closely so that it doesn’t escalate in the future.

Mya was officially diagnosed with general and social anxiety. She doesn’t want people to look at her. If you see us out, and speak to her, she will not respond. The doctor said we may even notice that she may lie from time to time, but only to tell us what she thinks we want to hear, not to be devious. This is a reaction of her feeling like she’s not good enough, or a bad person. If she lies, and tells us what she thinks we want to hear, in her mind, she thinks it will make her look like a better person.
When we left the doctors office, and were driving home, I asked her if they played games, or just talked. At first she ignored me, which is a sign that she doesn’t want to talk about it. Later, she mentioned something about the visit, so I brought it up again, and she burst into tears. When the doctor took her back, to talk to her, she thought she was in time out. The doctor told her where to sit, and Mya thought it was a time out chair, and she was in trouble. This type of meltdown I’m so used to dealing with. You have to be really careful what you say, because you never know how she’s going to take it. The doctor explained that people with anxiety issues will always grab the negative of a situation. The doctor explained so much about anxiety, and how it affects people. The list of behaviors I took with me made so much more sense.

We started anxiety medication this past Sunday, and on the 25th we will start seeing a therapist. From what I was told, the therapist will give her tools to help her cope and deal with the anxiety. I’m very hopeful.

On a positive note! Yesterday, Mya actually sang with me, in the car. She’s never done that, and in the past would never allow anyone to hear her sing.  She was on the honor roll again, for this 9 weeks, and went in front of the crowd to receive her award.  Mom asked me this morning if I’ve noticed any changes since the medication, and I told her that I’ve seen small changes, and she said for the first time in forever, Mya hugged her when she came home.  My heart is so full of joy to see these wonderful, small things that mean so much. If we’ve seen this much change in a few days, imagine where we’ll be in a month! 

Lesson for the day: You know your child, and you know when something isn’t right. If you have the means, push, push, push until you get answers. It’s been a long 3, going on 4, years, but I kept talking and asking questions, and finally, we have answers.

At last, maybe the world will be able to see just how wonderful, funny, and smart Mya is, and not just hear about her in my postings. 

What is Rheumatoid Arthritis, or RA?

Web MD describes it as such:

Arthritis means inflammation in a joint. Joint inflammation causes redness, warmth, swelling, and pain within the joint.
Rheumatoid arthritis is a type of chronic arthritis that occurs in joints on both sides of the body (such as both hands, both wrists, or both knees). This symmetry helps distinguish rheumatoid arthritis from other types of arthritis.
Rheumatoid arthritis may also affect the skin, eyes, lungs, heart, blood, or nerves.
Symptoms of rheumatoid arthritis are:
• Joint pain and swelling
• Stiffness, especially in the morning or after sitting for long periods
• Fatigue
How do I define RA? Life sucker.

What they don’t tell you in the description, or the symptoms, is that the fatigue is so bad; you can hardly drag yourself out of bed most days.

I was diagnosed with RA a few years ago, after struggling for a diagnosis for almost 3 years. All the signs and symptoms were there, but I didn’t test positive for the RA blood test, so the doctor kept testing, and prescribing meds, for everything else he could think of. I switched doctors, and she did her own blood work, and x-rays, and immediately gave me the diagnosis, and started me on medication to prevent further joint damage.

Medications are tricky when it comes to RA, and there are 100’s of medications, and concoctions they can try so as to find the right treatment for you.

I started on Methotrexate (MTX), initially. Methotrexate is described as:

METHOTREXATE is a chemotherapy drug. This medicine affects cells that are rapidly growing, such as cancer cells and cells in your mouth and stomach. It is used to treat many cancers and other medical conditions.

I started on a low, weekly dose, and gradually increased to 10 pills taken at one time, once a week.

Now, the tricky thing about MTX is, in order to offset the side effects, you are also given a prescription of folic acid, and with me having a sensitive stomach, I was already on Omeprazole, which is basically prescription strength Zantac, or similar. I noticed, after starting the medication, I was having terrible headaches on a daily basis. I later discovered, by process of elimination, the headaches were from the folic acid. As long as I don’t take the folic acid, I don’t have headaches. Guess what, I stopped taking the folic acid. The down side, if I don’t take the folic acid, I get mouth sores, and some slight hair loss. The mouth sores aren’t so bad that I go back to the folic acid. On the plus side, the MTX did significantly slow the hair growth on my legs! Win!

After a few months of no relief, I was put on Humira injections, and taken off of methotrexate. I was scared to death to give myself a shot, so Bob does that for me. Even today, I still can’t bring myself to do it. I know, I’m a chicken, but there’s just something about inflicting pain on yourself. I take the shots in my stomach, and was so scared when we did the first shot; I thought I was going to pass out. Turns out, they only sting, just a bit, while the medicine is being injected. The needle part is practically pain free.

I had some issues with my insurance and getting my Humira injections started, so I was without any medications for almost a month. It was then that I realized just how much the MTX was doing for me. After being on the Humira for a few months, and not seeing a difference, the doctor put me on a Humira and MTX treatment. Now I take my shots, and am back to my weekly doses of MTX. Right now I’m taking only 6 pills each week, instead of the 10 I was taking previously. So far, no improvement.

The other thing they don’t tell you is that you will have okay days, and you will have bad days. Pain is a constant, and you just learn to live with the daily discomfort, but there are days the pain is almost unbearable, not so much because it’s extreme pain, but because it’s a constant pain, that doesn’t let up.

Shoes. Oh, how I love my shoes. With RA, I’ve had to give up my heels and cute, strappy sandals. Anything that squeezes the sides of my feet, or goes over the top of my feet, is no longer an option. It’s very difficult to buy shoes that are stylish, age appropriate, and feel good. So, with RA, comes sacrifice. Major sacrifice. :)

Swelling. When I get home, my feet are so swollen, it’s ridiculous looking. It’s not the type of swelling you get when you retain water, it’s in different areas of the foot and ankle, so it’s actually quite odd looking. The knuckles on my hands will swell and turn red, and those hurt to move, or even touch them.

Eyes. Who would have thought RA can affect your eyes. I thought I had pink eye, my eyes were so red and puffy. The only thing I couldn’t figure out was why did it feel like someone was trying to squeeze my eyeballs, as if trying to get them to burst. After a doctor’s visit, and then an ophthalmologist visit, I discovered it was inflammation in my eyes, and not pink eye at all. More medication! At least this was eye drops and not more meds on my stomach. I will occasionally get inflammation in my eyes, and after several days, it will subside. I’m not sure if there are any long term effects of eye inflammation. I guess I need to make a note and ask the doctor.

Activity. While gentle walking is good for the joints, and helps prevent stiffness, finding the energy to do any type of walking is very difficult. If you do find the energy, within 15 minutes, it hurts so bad, you can’t stand the thought of walking back. I used to be so active. I danced; I played coed soccer and basketball, and was always on the go. Now, not so much. With reduced activity comes weight gain. And, boy have I put on the weight. This makes me sad because I worked really hard to lose all my weight about 10 - 12 years ago. Now I’m bigger than ever.

People. It’s a good thing I don’t take things to heart. My Dad is always telling me about an herbal cure for “arthritis”, and no matter how many times I try to tell him that RA is different than osteoarthritis, he still insists on the cures he sees on Dr. Oz. I just shake my head and move on. The thing is, to look at me; you don’t see the pain in my feet, knees, hips, and hands. I look perfectly normal. I think I do a pretty good job of keeping my illness to myself, and I try to keep my complaining to a minimum, or at least keep it down to just one or two people. It’s hard some days, especially if I’m having a bad day, and have to be at work. All I can think about is going home and wrapping up in a blanket, and sleeping, but the show must go on, so you have to push forward.

Living. I would love to be able to put on my dancing shoes and dance like I used to, but it won’t happen. I would love to have the energy to chase Mya around the yard, or shop all day with Andrew, but it won’t happen. Day long events require a couple of days of down time, just to recover. Long shopping trips means a long night of pain, and a morning of even worse pain. My life will never be what it was, but I’m alive, and I’m thankful for that. I’m well enough to spend quality time with my kids, even though it may not be the most fun time for them.

Marriage. I have to say, RA has taken a toll on my marriage. I’m completely and utterly exhausted all the time. By the time I get home from work, get dinner, clean up the kitchen, get homework, and everything else done that needs to be done, for the next day, I’m wiped out. It doesn’t leave much when it comes to intimacy. I feel guilty a lot of times, and sometimes I struggle with how to handle it all. I’m lucky that Bob understands, or at least pretends like he does, if he doesn’t. Not that our marriage is in trouble, but it’s nothing like it used to be when we were both healthy.

I don’t want sympathy, and I’m not writing this to gain sympathy. I just want to make people aware that not all illnesses are outward illnesses. Never judge a book by its cover. While you may see me smiling, joking, and laughing on the outside, I’m struggling, daily, with pain that will never go away. I struggle, worrying that one day I will be crippled and disfigured, or worse, the RA will affect my heart.

My daily lesson: Don’t take your health for granted. Live, laugh, and love, with everything you have. And, as the saying goes, dance like no one is watching.

TTFN

How Would You Respond?

Several years ago my son stopped by to visit. I could tell by the way he was pacing, he had something on his mind. We stepped outside to talk, and finally he told me he wanted to tell me something. He told me he thought he had romantic feelings for a good friend of his. His friend is male.

How would you react to this news, from your adult child?

I’ve heard many replies that vary from supportive, to downright cruel.

I would disown them. Really? You would turn your back on your child? They need to get right with God. Do you think that God wasn’t his creator as well? He’s going to Hell, it’s a sin. Isn’t judging someone a sin? Gays are sick. Fags need to be shot. The list goes on and on.

When I hear people say these things, it hurts. It hurts because he’s my child, and I love him with all my heart and soul. It hurts because I know there are so many cruel people in this world. It hurts because I know he will have a hard time finding acceptance among certain crowds or groups.

To turn my back on my son, when he came to me with this news, would be a sad situation on my part. I think the reason so many LGBT kids take their lives is because they have no one to turn to. I’m happy my kids can come to me, and talk to me, no matter what the situation.

Our family is very conservative, so there are many that don’t know. Not because I’m ashamed to tell them, but because I’m afraid of what they might say, whether it’s to me, or to him. As a Mother, I want to protect my child.

Is my son happy? Very. He’s been in a monogamous relationship for 5 years. He has completed his Masters degree. He has a home. He hopes to adopt in the future.

How did I respond? With as much love and support as I could offer. He's my child, and I won't turn my back on him.

Michelle Obama Can Shove Her Broccoli

Last year the school starting giving kids “healthy eating” talks, as part of the “Let’s Move” campaign. While I’m a firm believer in healthy eating, I do not think it’s the schools place to put our children on diets. I feel it is my responsibility to raise my children; the school is there to educate my children so they can be productive members of society. I know that sounds hypocritical, but as a parent, isn’t it my responsibility to feed, clothe and assure their safety and well being? Then why does the school feel the need to step in to my area of responsibilities?

My daughter started hearing the lectures in 1st grade. Now, there are ways to go about teaching children to be healthy and active, but reinforcing the word FAT is not one of them. In 1st grade, my daughter started refusing to wear certain clothes “because they make her look fat”. Mind you, my daughter is anything but fat!

Let’s skip ahead to 2nd grade, where my daughter is leaner than she was in 1st. A week or so ago, I attended a healthy eating lecture at the school. Again, it’s great they want the kids to be healthy, but the way they’re throwing this out to the kids, is in no way healthy for developing minds. Fat is a bad word. It’s bad to be fat. Those were the ideas I was left with when the lecture was over.

My daughter has told me the cucumbers she eats all the time are going to make her fat. About a week later, she told me she shouldn’t be drinking milk, because it is making her fat. She will show me her belly and comment on how fat it is. Notice the word fat being thrown around so freely? Just this week, she showed my Mom her belly and told her “look how fat it is”. My Mom showed her the ribs sticking out, both on her sides, as well as on her chest.

MY CHILD IS NOT FAT! PLEASE STOP WITH THE LECTURES THAT MAKE HER FEEL THIS WAY ABOUT HER BODY!

Not only are the lectures putting body image issues in her mind at an early age (that will come soon enough, thank you very much), it’s also teaching her that overweight people are bad. I don’t want her to think overweight people are bad people. There are people with health issues, beyond their control, that cause them to keep extra weight. I don’t want her to look at people, and judge them, based on their size.

My daughter doesn’t always eat healthy, but, for the most part, she does very well. On the flip side of that, and this seems to be an “after thought” in the lectures, she’s very active. She’s not ADHD active, but she has been known to climb a few walls. When I went to the lecture at the school, they briefly mentioned activity being part of a healthy lifestyle. I know diet and exercise are the key to a healthy lifestyle. If the schools are so head strong on making sure our kids aren’t FAT, then why did they take away P.E.? When I was in school, from 1st through 8th grade, we had P.E. every day, for an hour. AND!!! we also got 10 to 15 minutes of recess every single day of the week. We had the FAT laden food the cafeteria served, we weren’t obese. Now, the kids get P.E. once a week, and recess is not ever guaranteed. What happened there?

I want my kids to be healthy, but I don’t want my kids to be unhealthy. When my already thin 7 year old thinks she’s fat, we’re not heading in the right direction. At this rate, she will be anorexic by the time she’s 10. I think we need to rethink our goals and training for a “healthy lifestyle” for our future. In my opinion, the first step should be eliminating the word FAT from the lesson.

Speaking Of Mya

"The wildest colts make the best horses."
-Plutarch, Greek Essayist (46-120 A.D.)

"The next time your child acts like a bucking bronco, be encouraged that her spirit is strong. That’s a good thing. She will be less likely to follow the crowd or to get lost in the shuffle. Be heartened that she will make waves in this world instead of drowning in anonymity. I’m a firm believer that being strong-willed is not a bad thing. It takes a pretty strong will to make it in this world. Trust me. If you want your child to grow up and be a leader, a person of influence, you want her to be strong-willed.

That does not mean that we wink and smile when our kids misbehave. We show our children what choices they have and what choices they don’t have in this world. And we have firmly established boundaries and consequences in place for the choices that they make. But, we do our best not to take it personally when our children push back against us. Our job, after all, is not to break our child’s spirit. It is to show her how to harness it."

-Hal Runkel, LMFT, Author of ScreamFree Parenting & ScreamFree Marriage

While the quote, and the tip for the day, refer to wild colts, or broncos, I sometimes find myself referring to Mya as a wild thing. I've always said, if I had a girl, I want her to be strong willed. Yes, we argue. Yes, we're both stubborn. Yes, she tries me, and pushes the limits. Yes, there are days I want to pull my hair out, or scream at the top of my lungs.

No, I wouldn't have it any other way.

My Unsociable Butterfly

I’m writing this piece because it has bothered me for a couple of years that an educator thought my 5 year old was rude, because she wouldn’t speak to her.

For years I would refer to my now 7 year old, as anti-social. The doctor told me anti-social personality means you’re a menace to society. I was using the term incorrectly.

If you see us out, you will see a lively, rambunctious 7 year old. If you approach us, and speak to my daughter, she will look at you as if you have 4 heads. See, my daughter won’t talk to you, and heaven forbid you try to touch her. She’s not being rude, she’s our unsociable butterfly. You will find her, at a distance, flitting around, carefree, but if you approach her, she quickly becomes withdrawn. She will not talk to you. She’s not being rude, or disrespectful to you, she’s being Mya. She’s this way with most family member, so please don’t take it personally.

On the flip side, there are some people Mya will immediately gravitate toward, and act like she’s known them her entire life. Why is that? I have no idea.

I’ve struggled for years, trying to get her to open up and share her wonderful personality with the rest of the world. Dance classes, gymnastics, soccer, anything, where I could get her involved and it required interaction with others. Dance was a disaster. Mya wouldn’t go in the room without me, and the instructor took her from me and held her, and I left, closing the door behind me. I knew the cries and screams could go on for hours, but the teacher didn’t. After 4 classes, we were told “I don’t think she’s ready”. Gymnastics was great until she moved up to a class that not longer allowed the parents to be involved. Again, she wouldn’t go without me, and the gym made some exceptions for us. After a while, it didn’t get any better, so we moved on from there. Soccer was great, for a while. The coach would have to come and get her, in order to get her on the field, and once she was out there, she loved it, and was good at it. During the breaks, I would encourage her to run and play with the other kids, but she would choose to come and sit with us. Once she moved up and was with a larger group of kids, with most of them being new faces, she totally lost interest in soccer. As an outgoing Mom, it hurts to see your daughter missing out on so much fun. It hurts to see your daughter laughing, from the sidelines, while watching the other kids run, laugh and play. I know she wanted to join them, but something in her wouldn’t allow it. If a child did approach her and invite her to join them, she would turn her eyes from them, as if she didn’t see them. I promise you, she’ not being stuck up, or thinking she’s better than your child. She doesn’t know how to interact with her peer group.

When Mya was about 4, she quit giving hugs and kisses. Oh, how I loved those sweet little arms around my neck, and the sloppy kisses. Only 2 people are now allowed to hug and kiss Mya, and that’s me, and her Mamaw. She will stand firmly while you give her hugs, but she will allow me to hug her. She will tolerate you kissing her cheeks, but don’t expect the same affections from her. There are times she will come to me, and give me the biggest hug. Oh how I savor it, and take in the sweetness. From the time she was a baby, we would always hug and kiss each other, and say our “I love you’s”, at bedtime. Not any more. We always tell Mya goodnight, and I love you, but we never expect to hear it in return. I know in my heart, Mya loves us with all her being, I never doubt that, but over the years, I’ve come to accept, this is Mya.

Last year, Mya and I switched doctors. We had been seeing her previous doctor for probably 4 or 5 years. In all the time we were at the previous doctor, Mya never spoke a word to her. The doctor was bubbly, and always walked in the room with open arms, ready to give hugs. Again, heaven forbid you try to touch her. Mya would always, immediately, bury herself into me and try to get as far away as possible. When we had our first visit with the new doctor, I scheduled the appointments so that I could be seen first, because I wanted to talk to the doctor, about Mya’s behavior, without her being in the room. I gave a few examples of her behavior, and expressed my concerns. He asked a few questions and then asked to have Mya brought in to join us. Mya was so cooperative, but when he would talk to her, she wouldn’t respond. She asked me if I could leave the room, she didn’t want me in there while she talked. I left the room, but stood outside the door, with the door slightly open so I could hear. Mya answered all his questions, without hesitation. In doing so, it made me look and feel like I have totally over exaggerated everything. But I didn’t. Oh my gosh, what if it was me? Have I been holding Mya back? No, I have tried everything to encourage her to engage with others. Maybe I’ve pushed too hard. No, because after the dance incident, I never pushed her that far again.

To this day, my 7 year old still struggles in social situations. I don’t know what to do to help her, other than be supportive.

Unless you’ve dealt with YOUR child exhibiting this type of behavior, please don’t think my child is rude. She’s not rude, she’s our unsociable butterfly, she’s Mya, and she’s just being herself.

Easter

With Easter only a month away, I just have to post my all time favorite Easter picture!  I knew Mya would be terrified, so I told the lady to get ready to take the picture as soon as I set Mya on his lap.  I didnt' care what the picture looked like, I wanted to capture her true reaction at that age.  I love it!

Easter Dress: $50.00
Easter Shoes: $20.00
Easter Basket: $30.00
Picture with the Easter Bunny the day before Easter:   Priceless!!!

Stop and Smell the Flowers

Gotta love the spring flowers and the pollen caked noses!

New Glasses

Mya had to get glasses.  While at first she cried, she's doing much better about wearing them. 

Wow!

I can’t believe it’s been 4 months since I’ve posted. Of course, there are all kinds of things going on, yet nothing exciting to tell. 

We’re expecting a new baby in the family. My brother and his girlfriend are expecting Bentley any day now. With all the little girls running around, it’s refreshing to hear we’ll have a baby boy. 

Mya will start Kindergarten in the Fall, and the closer it gets to Fall, the more I lean toward home schooling. Not really, I’m just so nervous about her starting school, and the separation anxiety I know we’ll both suffer. Since Mya stays with Mom while we work, and pretty much being an only child at home, she’s not comfortable around kids her own age, especially large groups of kids her own age. I know she will love school once she gets over the newness of everything, but those first few weeks will be tough on all of us, I’m sure. 

We’re planning a weekend getaway soon, and we’re all looking forward to it. Bob and I told Mya about it this morning, and she doesn’t want to wait, she wants to go now. Me too! We invited Andrew and James to go along, but they declined, so I guess it’s just the three of us. We will stay at the Lodge, which I love! The rooms are so nice, and they each have a porch that looks out over the lake. I can hardly wait to sit on the porch with a hot cup of coffee and enjoy the sunrise. Of course, they have the most awesome shops, and a fabulous Variety Show, which we will see while we’re there. I’m getting more excited just writing about it. Just a few more weeks!

TTFN!

Leave it to the Professionals!

I’ve never claimed to be a writer, although I do sometimes love to get my thoughts on paper. The other day Bob and I were on our way to work, and as we approached E’town, we could see and smell the smoke from the wildfires that took place in Fort Knox and Sonora. It was an eerie feeling as we drove through the smoke, so I wanted to try to capture it in writing. Well, I wrote my short descriptive story about our drive to work that morning, and I asked Andrew to take a look at it and let me know what he thought. Here’s my story:

"A pungent odor filled the air as we made our way down the WK Parkway this morning. A caliginous sky left us questioning the events of the previous evening. An old combine, with not enough grease on its bearings, had sparked a field of soy beans. What started as a small, containable fire rapidly grew into the area’s worst wild fire. Burning out of control, consuming acres and acres of soy bean field, the fire quickly approached the small community, threatening the homes and barns standing in its path. The quick response of the fire department, combined with the Forestry Department’s knowledge, and the local farmer’s tractors, brought the fire in control within hours. Throughout the night the fire was watched, with nervous hearts, to assure the wind didn’t stir the still burning embers.


This morning, making our way to work, we were witness to the remnants of the devastation. The air, thick with smoke, lingered throughout the town, creating an intense fog for the morning commute. The smell, lingering in the air, thick and heavy, bringing back childhood memories of our wood burning stove, was embedded deep in our nostrils."

I guess I should have known that a professional writer would rip it to shreds. LOL! Good thing I’m not sensitive to constructive criticism. Andrew replied with the following:

“Well, it needs a middle and an end. A story, for the most part, is about character, and what you have here, is a premise for a story. I need to see character(s) and what they learn, going back to the memory of a woodburning stove is good--but more specific, what does a wood-burning stove smell like to you--and I want to see more and more of this happening. And, on that note, leave out the Fire Dept, the Forest Dept. that its the area's biggest fire. That's exposition. Again, bring it back to characters. Or, make what you have much more concise, and create a metaphor for this fire and your memory, and really elaborate the images that are brought up, but conclude on something punchy...this could be a comment on something going up in smoke, an old flame, whatever, but it could be great. (The note about the combine is very beautiful :) )”

After giving me this tidbit of information, he went on to write how he thought I should have written the story. Here’s his version:

“The road was black as pitch for the furrows of smoke and ash like fat flakes of snow. In the distance, the waves of fire crop licked the sky, and the black clouds rolled up like burning wallpaper. There was a smell in my nostrils, one of kindling, an old wood-burning stove on a brick hearth in Winter. My eyes watered then as they do now, my second marriage the heavy cherry log that melts, melds with the soot. The soybean field smolders now, waiting for fairer weather to be burnt out.”

Talk about pencil envy! After reading his version, my sad little story didn’t seem fit, even for a children’s book. Also, do you know how long it would have taken me to come up with something like that! Not in my lifetime! LOL! Of course, I was only writing a short description of what we experienced, but Andrew, in his response, wanted me to make it into a story. There’s just not enough time in the world for me to come up with something like that…. I guess that’s where the saying “Leave it to the professionals” comes into play.

I’m very proud of Andrew, and truly welcome his input on my inadequate writing skills. I hope to see him published in the near future.

TTFN!

What to do, what to do???

Now that we have doctor’s visits out of our schedules, life seems pretty calm. No appointments, not nearly as much worry, what do we do with ourselves? It feels like I have so much free time on my hands. Final diagnosis for Mya: None. We are in the wait and see if it happens again mode. Hopefully she never has another episode. I’m still left with the question of “If it happens again, then what?” I guess we’ll see.

Andrew and James will close on their house this week. I couldn’t be more excited for them! Andrew has plans drawn up of what he wants to do to the house as far as some small remodeling, and tons of decorating. I can’t wait to see the finished product! Of course, it will take place over time, and not happen over night. I know that disappoints Andrew. I think he gets his impatience from his Mum. LOL!

Bob and I are planning a Halloween party for the immediate family. Halloween is one of our favorite times of the year. The scarier we can get the house, the better! Of course, since we will have smaller kids at the party, we will keep the tricks as mild as possible. Don’t want to send anyone home with a permanent fear of the dark! LOL! I’ve got several games planned, as well as “hayride style” trick or treating through our neighborhood. I think the kids will have a great time!

There’s a lot of turmoil and chaos going on in the family right now. I have a feeling it’s going to make for a very awkward Christmas gathering. I hate it for Mom, and really wish everyone would come to their senses, but I don’t see it happening any time soon. Maybe, one day, people will grow up and realize the world doesn’t revolve around them alone. Sorry, I just had to get that out there, in case the right people are reading my blog. GROW UP AND GET OVER YOURSELF!

Work has been crazy busy this year. Based on our business you would never think we were in a recession. I hope it continues to boom through 2011 and beyond.

I’ve been thinking about a hobby, but can’t really decide what I would like to do that doesn’t require a huge investment. I used to love to scrapbook, but I just can’t seem to get in the right mind set to get started back on that road. I’ve tried the cooking thing, and that just wasn’t my cup of tea. I’ve been reading a lot lately, but I don’t really consider that a hobby, it’s more of my relaxation time. I’m looking for something to occupy my mind and hands. I’ve considered photography, and even have a make shift studio set up in the basement, but I can’t afford to get all the great pictures developed. LOL! I think it’s because I want a copy of all of them, and multiple copies to share. Although I love having a digital camera and the ability to sort out the crap, I don’t like the idea of not having a picture in my hand. I need to sort, look, rotate, and study my pictures to see which ones really capture what I see in the lens. I can’t do that with a digital without tons of development costs. There’s a wide variety of editing software out there, but like scrapbooking, I just can’t seem to get my mind focused on learning all the “tricks”. We have an editing program on our computer, but so far I’ve experienced some unwanted cropping when transferring my final masterpiece to a photo developing website, so I never use it. I can’t figure out why the software is cropping a huge portion of pictures during the transition. Maybe I need “Photo Editing for Dummies”! LOL!

TTFN!

How do you spell relief! E-K-G

Great news! We just got back from the Cardiologist and everything is fine with Mya's heart! She does have the small hole, but nothing that will require surgery, or even follow up visits with the Cardiologist!

It was listed on Mya's paperwork that she had Long QT, but the doctor couldn't figure out why. While we were there, they did another EKG and Echo, and both showed her heart to be functioning perfectly. The doctor looked at the results from her previous tests, and said those looked good as well. It's a mystery to everyone as to why that was put on her paperwork.

Bob and I are both extremely relieved to get this news. It's caused a lot (and that's an understatement) of unnecessary stress this past week, but we're so grateful to find out everything is fine.

We're scheduled to see the Neurologist again, on Thursday. Depending on what he says, and now that we know it's not a life threatening thing, we may just opt for the wait and see approach. Maybe this is something she will outgrow.

We want to thank everyone for their well wishes, prayers and support! It means a lot to us!

TTFN!