Another day...

So, it's another day. Not a manic Monday, at least.

Looking for the sunny side can be difficult at times. Oldest comes into town for an early birthday celebration. We get 15 minutes (so she can pick up her present) and then we get to take her out to dinner at a restaurant that refuses to release full nutritional info for their offerings. They only offer it in states where it is legally required. Asked the server if they have anything in the store. She asked her manager who said it was available online. Uh...no. So, I tried to be safe and ordered one of the vaunted under 550 calorie meals. So salty might as well of been drinking seawater. Grease all over the plate. Ugh...but it was still lower fat, it seems, than some of the Weight Watcher offerings.

Needless to say, I was in a horrendous mood.

I know that, in a way, I'm being unreasonable. But, I have explained to oldest before how much it hurts when she marginalizes me and ignores me during the brief times she is home. She doesn't understand it and doesn't get it. If my own kids don't want to understand what I am going through and, maybe, give me a little help, how can anyone else?

So, today, I need to go do laundry, to do grocery shopping and some work for work. But, at noon, I sit here. However, in my defense, I did walk the dogs around the block (six tenths of a mile) and I haven't been able to do that in a long time. I also did the Wii Fit for a while.

Yesterday, I did research and discovered that fixing the washer will require a part that costs app $150. I don't think that a 15+ year old washer is worth that. So, I am in the market for a used one.

Anyway, to get my peace back, I must discover the silver lining and sunny street. I walked the dogs around the block. My back didn't hurt doing it. My dog is sleeping quietly beside me here on the couch, cuddled up (which is saying something for a 60+ pound doggie). The tsunami was, apparently, pretty much a bust. That's a good thing. And I am getting physically stronger and more in shape. I just need to work on the mental and the emotional. But, I'm getting there.

Quiet

I like this time of day. It is early. No one else is up. The dogs are sleeping quietly, not understanding why in hell I am up out of my nice warm bed. Big Dog is sleeping here on the couch beside me, over his brief miff that I made him move from the nice comfy spot at the foot of my bed when I got up.

Cars aren't driving by. No one is walking their dogs by the house causing the dogs who live here to become offended at the temerity of those other canines to actually sniff and do other unspeakable acts in their yard.

I can hear the refrigerator cycling on and off, the sound of the furnace kicking on. It is blessedly quiet.

I used to prefer nighttime...about ten or so at night on weeknights, later on weekends. Now, my mother tends to stay up as long as I do. That has spoiled the night time and the dark for me. I loved the dark.

But, now, I can see the world gradually lightening out my window, hear the birds awakening.

That's why I set my alarm on the weekends, to see the world waking up and have my quiet.

Oddities, strangeness and control

It is odd being the parent of a child with special needs like Turner Syndrome. After all, she doesn't look like she has special needs. She has two workable legs, she has two workable arms. She has all her fingers and toes. She has two ears, two eyes, a nose and a mouth. Oh, yeah...she has a mouth. What a mouth!!!! She is not developmentally disabled and is, in fact, quite bright. Okay, sometimes too bright for her own good. Matter of fact, too bright and too mouthy sometimes.

Nevertheless, she has special needs. I'm still getting used to that.

Organization is a big thing. Knowing where I need to be, when I need to be there, what I need to take and who I need to take with me.

I tried the calendar and contacts on my computer. Unfortunately, I would go to work, need to make calls and didn't have the correct info with me.

So, I tried a notebook. Kept losing my ink pen and who can really read my handwriting. Trust me, there is a reason I type everything I can.

So, I thought of a pda. Unfortunately, they are expensive. The iPod Touch was my solution and it has been a lifesaver. Contacts and calendar synced with my home computer. I found a database app where I can create different tables for info - my mother's medications and drug allergies, Bird's medications, doctor visits and test results. I even track height and weight for her in there.

I use the stanza reader and download books to read while sitting in waiting rooms. No, I'm not completely organized but I'm getting there.

Since I can't afford a personal assistant, I am doing the best I can. For example, so far this year, these are the appointments I've had.

Jan 7 - psychiatrist (which ended up being canceled due to weather so we did a phone consult)
Jan 18 - geneticist
Jan 20 - Bird to the dentist (where the dreaded B word was uttered...braces)
Jan 21 - my mother to the doctor
Jan 25 - appt for my mother at a senior citizen's housing complex (she wants to move where there are more people her age and where I don't keep turning the heat down to a tolerable level)
Feb 1 - me to the dermatologist
Feb 4 - psychiatrist
Feb 17 - pediatrician for a problem with Bird's ankle hurting
Feb 17 - orthopedist for a problem my mother is having with her shoulder.

Yay!!! I'm done until March 11, March 29, March 30, March 31, April 5 and April 29th unless Bird ends up needing to go to a specialist.

My life is on the iTouch.

Literally.

No, really.

After I was in the hospital back in October (possible H1N1 and pneumonia...it wasn't fun) and was put on steroids for a while, I gained weight. I'd been struggling trying to lose much needed weight anyway and this just made it worse. So, yes, I was one of those people who made a New Year's resolution. But, I made it an action plan. Had an app named Lose It! and I started entering what I ate. Everything I ate. Then, because I have some obsessive tendencies of my own, I carried it a step further. I created an excel workbook. One tab tracks weight (with a graph with trendline for those wobbles when I go up slightly). Another tab tracks BMI. Then there is the tab where I enter the daily average of a week's intake and compares it to the optimal diet. I can see with this where I need to make adjustments in my diet. Another tab tracks measurements in key areas and gives me a cumulative weekly change. Final step of my action plan? A Wii. Yes, I bought a Wii and Wii Fit Plus. I do my best to do some every morning and every evening. A pocket pedometer helps me track my steps per day. I do yoga, strength training, balance games, aerobics. I also bought Skecher's Shape Ups which are amazing! Really, I cannot brag on these shoes enough. I have arthritis in my back and, when I walked too far, my left thigh would go numb. Since I've been wearing these shoes, my back hasn't hurt and no numbness. They are absolutely and completely amazing.

Since I got out of the hospital in mid-October, I have lost 15 pounds. Since Jan 1, I have lost 10 pounds. Since Feb 1, when I started the Wii, I have lost 7 pounds.

My action plan is important to me. Part of that is because of the good results I've been getting. Part of it, though, is that I am in control. I can control what I choose to eat. I see almost instantaneous feedback on how I am doing. I eat too much of the wrong thing one day, it reflects in my weight the next day. I know if I eat spaghetti, I am going to feel sluggish the entire next day. If I eat tomato soup, I will bloat up a little from the higher sodium content.

I am in control. And control helps.

People may not look at Bird and see special needs. They may look at her and treat her like a 9 year old. I can't control that. I can't be responsible for that. But, I can control my activity level and my food intake. I can be responsible for that.

That's another silver lining right there. Those sunny streets are all over, if you just know where to look.

Therapy...

Okay, I probably needed some therapy during the last 13 months. I've been rather boring, I think. I wanted to talk about the diagnosis, the ramifications, the frustrations, the fears, the anxiety. I did quite a bit but not like I really need to. It's hard to explain. I've been boring because I did talk about it a lot but it was in the course of conversation, not someone sitting with me and holding my hand and letting me get it all out. I needed someone to, just for a time, make this as big a deal for them as it was for Bird and me.

I remember telling one of the doctors I needed someone to tell me exactly what I needed to do when...it was all to overwhelming. He told me there was a chart in one of the pamphlets he gave me. No, that isn't what I meant! I meant I needed someone to take my hand and say, "We're going to do this now" and tell me how to deal with the problems and road bumps...because there are always road bumps.

I had flashes of what I needed along the way. A friend who took the time to talk to me on the phone and explain the karyotype results to me, the process of extracting and counting the chromosomes. My friends who acknowledged the difficulties we were dealing with with the beautiful gift basket. The school that listened and has been amazing. One of my brothers who picked up some of my mother's doctor visits. My son who lives in town who helped when I went out of town on vacation and when I was in the hospital. My significant other who took me on these marvelous vacations and listened patiently.

But that closet door I spoke about in an earlier post? It's bulging a bit at the frame, things are leaking out.

Driving to work the other day, there was a news report about teen pregnancy rates and costs. My eyes filled with tears. That was a worry I didn't really have. The chances of Bird having children that she gives birth to are not that good. I began to grieve the nonexistence of grandchildren I wouldn't have.

I see the other girls in her class and I ache. I see other 14 year olds, growing into physical maturity, and I hurt. Going into a restaurant and Bird being handed a kid's menu.

I'm having trouble seeing the silver linings and sunny streets right now. The crisis is over and I can now start to process and grieve what I thought would be and accepting what will be.

But, I look back over the last 13 months and I can pick out the silver linings and sunny streets. Bird is now a bit over 4'8 3/4" tall. She has grown 2 3/4 inches in the last year. Her school has put in place a 504 plan to deal with learning issues. We heard of a study at Stanford for girls with Mosaic Turner Syndrome studying the learning differences and are waiting to hear if we got in. Bird is accepting and matter of fact. The children issue doesn't affect her for the moment...she has been adamant for some time that there are too many children without parents out there and she wants to adopt. Her classmates are accepting of her and treat her as a 14 year old, no matter if she looks like a 10 year old. Her latest bone age was 10.5 years so we can still do the growth hormones for a while longer which will not only increase her height but help to strengthen her bones. Bird and I have been having fun working out on the Wii and have a friendly competition going. Bird has goals and ambitions and a road map of how to get there. I'll be on that journey with her and I'm looking forward to it. Well, maybe not all of it. She's planning on adopting a lot of kids and expects me to babysit while she's off being a paleontologist (guess I'll need to learn to spell that if things all work out) or an archeologist. And we'll need to discuss the whole I won't live with her when I'm old because she's putting me in a nursing home and going to Vegas, baby!

Yeah, we're on our way. I just need to get some spring cleaning out of the way, first. Like cleaning out that fear and anxiety closet and dealing with it so I can move forward. I need to learn to not freak out a bit when what I think will happen isn't the reality and to take the bright spots and hold them dear. Things like relishing not having to go back to the geneticist next year...Bird can wait two years before her next visit! And not stressing over her having to have a cardiac recheck every three to five years when I thought she was all clear on that front. Doing a happy dance because the scoliosis is still quite mild and the growth hormone isn't making that worse. Instead of stressing over the pimples she has begun to be plagued with, relishing that maybe this mean she is finally going to start physically maturing. Bird's already a lot more emotionally mature than I am in a lot of ways.

Folks, I am too old for this...

Stilletos, mules, and pumps raining down...

So, things went on. The xray showed a bone age of 10 so we could do the growth hormone injections. There was no problem getting it approved by insurance and we talked to the nurse that was going to come teach us how to do it. Of course, nothing can go off without a hitch, donchaknow. The copay for the growth hormone was $30. When the insurance authorized mail order pharmacy called to set up delivery, they told me the monthly copay was $75. What????? Turns out, there's a little clause in their contract that means they can charge a higher copay for speciality medications. Hmmm, no thank you. Rigamarole to get it changed to another pharmacy and get the lower copay.

Get the shots started. No shots in the abdomen, though. Per Bird, she has a problem with sharp implements near her stomach. Smart kid.

Over the next few months, we dealt with a broken injection pen on a class trip out of state, her dad refusing to take the medication with him when he took her on a weekend visit, my vacation to San Francisco (where it rained the whole time! but Bird got a new red dress) and someone else besides me giving her the shot, homework issues, ADHD medication issues resulting in her going to a psychiatrist for medication management, an all clear from the cardiologist and good results on the blood tests (for growth markers and thyroid levels).

Oh, and then there was the squamous cell skin cancer removed from my arm and multiple visits back to the dermatologist for me. Endo visits every four months. Several visits to the psychiatrist, the geneticist visit who explained it all to Bird in a way she could understand, joining the Turner Syndrome Society, reading and learning as much as possible about the condition, giving shots every night, making sure she takes her Concerta every morning, fighting and struggling with homework completion issues, $500 for new glasses, fighting and struggling to get her tested for learning disabilities. Through it all, I kept the door to that closet that housed my anxiety and fear locked up tight.

And there were silver linings and sunny streets...like the basket of gifts and gift cards some friends gave to Bird and I because we were having a time of it.

Always learning, learning, learning, researching and googling and binging. Girls with Turner Syndrome have a high rate of early ovarian failure, they more often than not have issues with conceiving a child, problems with osteoporosis, diabetes. The learning differences can make things difficult for them. Delayed puberty. I heard of girls who had breast implants because they were grown and had no breasts. Egg harvesting so they could do in vitro when they were older and wanted to have children. Discussions of who you tell and when. What about when they start dating? Girls who have to have their ovaries removed when they are twelve and thirteen because of the presence of some Y chromosome material.

And then the things that had really nothing to do with TS at all...an $80 a month increase in insurance premiums (with a silver lining that I had insurance because if I didn't, Bird wouldn't have the growth hormones that increased her height because they cost over $2,000 a month and the Concerta would cost nearly $300). My mother's increasing dependence on me. The feeling of never being alone, never without something to do.

I worked and ran errands and smiled and joked.

Raining shoes...

For anyone who might be reading (although I doubt there is), I will now expound on a few other issues that arose at about the same time as Bird's diagnosis.

My mother moved in with me the previous October. I love her dearly. However, she has memory issues. She doesn't drive. She is often rigid in her behavior. And what she decided to pay me after she moved in was half of what her living here ended up costing me and way more than that less than she told me she would contribute to the household.

My son had to have his wisdom teeth out.

I was informed that the overtime I'd had for the previous year or so was ending due to budget cuts and there would be no raises.

Yeah, it wasn't the best of times. It was also along about this time that I realized, on a visceral level, that I was all alone in this. I wasn't going to get the level of emotional support I needed. I shoved that into the closet, too, with the fear.

But, there are silver linings and sunny streets if one can just look for them.

As soon as I had the diagnosis and the doctor's appointments, I called the school and spoke to the principal. I explained the situation, that Bird didn't know and she would be told soon. I wanted them to be aware and to be ready for any adverse reactions on her part. I emailed them information on Turner Syndrome. Like me just a couple of months before, they had never really heard of it before. I waited a few days before speaking to Bird about it. I had decided that an offhand, oh by the way, approach might be best. I started by saying that I had some news and this news explained her flat feet, eyesight, the urinary tract infections she used to get, her ADHD, and her scoliosis. I told her what it was and and what it meant and that she was going to have to go see some doctors. She breathed a huge sigh and said, "Oh, good...I thought I was just unlucky and was waiting on the next little thing to go wrong." Her only real question was if she would get cancer and die from this. I told her no...no cancer.

She handled it with far more grace, dignity and acceptance than I. That, my friends, is a silver lining and a sunny street.

And hit me in the head...

I was at work the day I got the news. I sat in my car to call the doctor. I immediately began taking notes, figuring out what I needed to do next. Bird was 13. We needed to have a bone age xray to determine if there was still time for growth hormone to work. An endocrinologist experienced in Turner Syndrome. She needed a cardiac workup to check for coarctation of the aorta and to check for any other potential issues that had been heretofore missed. A geneticist appointment. My mind was reeling.

I hung up from the doctor and the tears burst forth...for about ten seconds. I sucked it up and started making the calls I needed to make. I called the local children's hospital (where I was referred to) and was quoted an appointment in April. I was flabbergasted. I am sitting in my car, in the cold in January and the experts can't see my daughter until April. I called the pediatrician back. Fortunately, she knew of another doctor. I called the office and was able to get her in within just a couple of weeks. I called my ex-husband, Bird's father to fill him in. Bird's stepmother made the comment that it wasn't like she had "real" Turner Syndrome...she didn't have a webbed neck. My ex-husband wasn't able to make it to the first endocrinologist appointment...he had to help his wife take her mother somewhere that day.

I went back into work. I functioned. I made another call from my desk to make the geneticist appointment. I was quoted a date sometime in September. Per orders, I called back the pediatrician and reported it. She took that fight on.

The cardiology appt was easy to schedule.

When all was said and done, I had the appointments ready to go.

Endocrinologist - Jan 20
Geneticist - Jan 29
Cardiologist - Feb 2

There was no time to process, no time to accept, no time to grieve, no time to worry. I couldn't show Bird my anxiety. I was filled with fear for her future but had to shove it into a deep closet, lock and bar the door, and then pile various issues in front of it to keep it from escaping.

I didn't like this journey.

Watch your head...there is a shoe falling

And the shoe dropped...

I took Bird in for her physical and the doctor mentioned (again...as she had for the entire 13 years of Bird's life) that Bird was small for her age. This was something I was well aware of. Bird frequently didn't even make the growth charts. At most, she would zoom up to the 5th percentile. I never thought anything of it since I'm no towering example of womanhood. I'm just 5'3 3/4" (the doctor claims I'm 5'3" but I don't believe him...I know how tall I always was!) So, I kind of started to tune her out. But, then, she got my attention again. She mentioned testing. The short stature combined with lack of puberty was sending up red flags in her mind. I felt like I couldn't breathe for a minute. I asked what tests she wanted to run and what it could be, if anything.

Then, I heard the words that have changed everything.

Turner Syndrome.

Knowing that diagnostic tests are subject to deductible on my insurance, I told her I would have to wait until after the first of the year so my flexible spending account would be filled again. I was tapped out.

As I drove home, I could barely think. I had to hide my anxiety from Bird. I walked calmly into the house, booted up the computer and started doing research. I found out where I had heard of Turner Syndrome before...Law & Order. It was portrayed somewhat as the girls who have it are magnets for pedophiles. Oh, great...just what I wanted to hear.

As I read more about Turner, I could see so much of it reflected in Bird. I was sure. I was positive. And I couldn't cry or rage or get on with what needed to be done.

This was November, right before Thanksgiving. The extended family was all coming to my house for the celebration. I could barely function and felt in a fog. I wanted to talk about it, cry, scream.

The next weeks were filled with researching and asking questions. I joined an online support group to find out more.

I learned...a lot. Some I still don't completely understand. Turner Syndrome is a chromosomal abnormality that occurs in approximately 1 in 2,500 female births. It is only present in females. Simply, girls have XX chromosome and boys have XY. In Turner Syndrome, one of the X chromosomes is missing or damaged. Some girls have Mosaic Turner where only a relatively small percentage of the cells are affected. This is determined, apparently, by when in development that it began. Girls with TS frequently have swollen feet and hands when born (and, yes, I pored over her baby pictures, trying to discern any edema we might have overlooked). Some of the signs are a webbed neck, learning difficulties, vision issues, short stature, delayed puberty, flat feet, scoliosis, cardiac problems, kidney problems, hearing problems. There are others. No girl with TS has all the signs. But, Bird had enough. I was sure.

So, we waited. And, on the first Saturday in January, I took her to the hospital to have the blood drawn for the karyotype test. And, then, I waited. And waited. And waited. karyotype tests take 10-14 days to run. It was the longest two weeks of my life, I think.

Finally, I got the news. She was diagnosed with Mosaic Turner Syndrome. And the journey began...

It's all about me...

Well, not really. But it is. In a way. I guess.

Let me start by telling about my youngest. She is bright, funny, lovely. Let's call her Bird. That's because she eats like one...3-5 times her weight daily. But she is skinny. And she is small. Compact is the way she prefers to be referred to. Environmentally friendly. NEVER petite.

As her life has progressed, I dealt with various issues as they occurred. Urinary tract infections when she was four and five years old? Unusual, yes. Kidney ultrasound showed no problems, though. Then there were the leg pains. They were caused by flat feet. Flat feet, I'm told, don't generally cause problems. They do for Bird, though. There was the immaturity and drawing on herself and her almost obsessive attention to some things (like her hair...no poof!!!). Some things had to be arranged just so but she was so disorganized! And the fears...Santa was a big one. She asked for presents to be left on the porch. She didn't want a big fat man in a red suit coming in when we were all asleep.

Then, we had the fear of death. That was a rough one.

A lot was explained when we discovered she had ADHD. Medication helped immeasurably.

And then there are the glasses (thick glasses and OMG whoever would have thought that glasses for a kid could cost $500 and that is with single vision lenses and no polarization or whatever it is called) and mild scoliosis.

By the time she was 13, I felt like I was always waiting on the other shoe to drop. I just tried to enjoy her as she was, encourage her, love her, help her to deal with everything with a good attitude and a smile on her face.

But shoes, they do drop...

First Post...

So, this is my first blog post and I decided to name it, imaginatively enough, First Post.

Let me introduce myself. I am a single parent of three, one still at home. I work with the data side of databases at a nonprofit. Otherwise, not much else that I'll talk about here.

I had an urge to write. I used to enjoy writing and people seemed to enjoy what I wrote. But, as often happens, I got out of the habit. I'm hoping this gets me back into the habit.

The title of my blog comes from "looking for the silver lining" and "walking on the sunny side of the street". There are those that would think there isn't a lot of silver linings or sunny streets in my life. I have to look for them a lot of the time. But finding them is what allows me to maintain what little sanity and contentment I have left.

I'll be posting from time to time. Don't know what yet. Check back now and again and we'll both find out. :)