Monday, August 30, 2010

"Ten Commandments"

Something I found on my computer at work (I saved it back in 2006 but don't think I ever shared it here).  


The Ten Commandments for Parents of Children with Disabilities

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Sunday, August 29, 2010

Sunday Mornings

 . . . are for sleeping in.

Wednesday, August 25, 2010

This and That

(darn, I've already used this blog title before too!)

I don't have a lot to write about, but I felt the need to bump my last post because it's had me depressed all week.  I love ALL my children to the moon and back, but sometimes it just bums me out that I don't have the "typical" family with four "typical" kids.  I'm not naive to the fact that there are many parents whose typical kids give them more grief than my kids with special needs will ever give me.  But, it doesn't negate the feeling that I wish things had been different.

In other news:

On Monday, I received a phone call from the cardiologist's office at St. Louis Children's Hospital telling me I needed to reschedule Jack's appointment.  When I asked whether I had to schedule a different week and was told "yes", I calmly told the scheduler that I could not reschedule a different week because I'm driving 1500 miles to see FIVE doctors that week and I'm not (nor could I even if I wanted to) rescheduling all his other doctors.  I told him that he needed to get Jack in to see a different cardiologist.  The next day, I had an appointment with the head of cardiology (who I hear is not the most personable guy, but as long as Jack gets his ECHO and EKG and has them read, I don't really care who I see).

Crisis averted.

My nursing agency is giving me grief about Kristi working overtime.  I need coverage one weekend evening in September and Kristi said she could work. The scheduler told me "well, that puts her into overtime".  I don't really give a rip. This agency gets paid well over $8000 a month from my insurance company, they don't remotely staff me the number of hours I've been approved for, and they can darn well pay a few hours overtime to get me coverage I need.  Wouldn't you agree?  

I think I've had enough advocating for one week.  Well, actually, given my profession,  I guess I'm always "advocating".  Let's just say, I've had enough advocating for myself/Jack for one week.  I know, I'm a lightweight.  But, I'm tired.  

I'm tired a lot.

I don't know if it's the culmination of 19 years of advocating for my children with special needs or whether it's being almost 50 and the change that goes along with that. 

Regardless, I'm just bone tired lately. 

Well, I think I've sufficiently filled up enough space with words to hopefully make it worth your while to check in on us.  Time for me to go to bed get Jack ready for bed.  I'll leave you with a few pictures.

Anyone else's kids into these bracelets?

contemplating his next move

Eric told me this week that there is one thing he doesn't like about 3rd grade.  "We have to be buddies with the Kindergartners and I'm not really fond of little kids".  

Ah, to be too grown up for "little kids" by the age of 8.  

Thanks for stopping by my friends.

Sunday, August 22, 2010

College Bound, Year Two

In a few short weeks, Hilary will return to Rochester Institute of Technology to start her second year of college.   We’ve been busy getting her ready for another year spent two thousand miles away from home. Hilary doesn’t drive (her choice) nor would she have a vehicle at college even if she did drive. So, she’s pretty much stuck on campus when she’s at school.  We’re encouraging her to learn to use public transportation so she can get out and about the City of Rochester, but she “listens” to us with one both ears closed. 

Hilary’s decision to attend RIT was a very last minute decision. Hilary doesn’t seem to worry too much about her future and how she’s going to support herself.  Apparently, we make her life way too comfortable at home!  We never really considered RIT because of the distance and the cost. However, after doing some research and talking with someone from admissions, we learned that students who are deaf or hard of hearing are admitted to RIT through NTID  - the National Technical Institute for the Deaf  (which is part of RIT). NTID students pay a reduced tuition because of federal funding they get.  With the reduced tuition, the cost of sending Hilary to RIT is about the same as if she attended one of our state Universities.  The bonus of RIT is that about ten percent of their students are deaf/hard of hearing, which we thought would be good for Hilary because she hasn’t had any deaf peers since we moved from St. Louis to Phoenix when Hilary was twelve years old.  The best part was that RIT offered a degree in film and animation.   It was a perfect fit – a school with a relatively large deaf population and a degree is something that Hilary really had an interest and a talent in.

Hilary‘s first year of college was overall a good one.  She did well in most of her classes.  Ironically, the only classes she didn’t do well in were classes where everyone else in the class was deaf and only used sign language (including the teacher).  Hilary is not proficient in sign language and we questioned the placement.  They assured us that the class was small enough that Hilary would do fine.  Well, not so much so.  While we still think RIT is a great school and a good fit for Hilary, we have some concerns with Hilary being placed primarily in classes with kids who sign, despite the fact that they know she doesn't sign.  Hilary told us that this year, she chose classes with hearing kids. She also made sure that she signed up for c-print services for all of her classes. (c-print is similar to live captioning.)

Hilary is “unique” in that she is not a typical cochlear implant user who has good hearing and speech skills, nor is she proficient in sign language.  Hilary could have good hearing and speech IF she would wear her cochlear implant.  As I’ve mentioned before, Hilary chooses not to wear her implant.  (Although she says she wears her implant in class.)  Hilary can read lips fairly well, but it’s very hard to carry on a conversation with her when she refuses to use the technology implanted in her head that allows her to hear.  It’s also very difficult to understand her speech when she doesn’t have her implant on.   We all get frustrated with Hilary.  (Mary pretty much refuses to talk to her.)  It would be one thing if Hilary’s lack of hearing and intelligible speech was something beyond her control, but it is not.  Unfortunately, at this point, there is nothing we can do to make Hilary use the technology she was given.  You can give your children opportunities, but you can’t make them take advantage of those opportunities.

Last Fall, Hilary applied for, but was not accepted into the college of film and animation for this coming year.  It’s a very competitive program with few slots.  Hilary’s Plan B is to get an Associate Degree in Graphic Design.  She took a few classes last quarter and she enjoyed them and did well.   She hasn't decided whether she's going to apply again to the college of film and animation.  Hilary is excited about going back to RIT and we’re optimistic that all the money we are spending to send her there will reap the rewards of an education she can use to support herself some day.  Of course, much will depend on Hilary’s choice to either use her cochlear implant or not.   If she’s not going to use her implant, she needs to become proficient in sign language.  But, I guess she’ll have to figure that out on her own. 

This parenting thing is not easy at any age.  Hilary is just another reminder that I’m not in control.  It’s hard to acknowledge that and it’s hard to let go.  While I wish Hilary would do things differently, there becomes a point in time where she has to make her own decisions and live with the consequences.  Now is that point in time.

Notwithstanding the foregoing, it’s important to share that Hilary is a good kid, she is happy and she likes who she is in all her “uniqueness”.   She's bright and she's gifted with an artistic and creative genius.  Hilary doesn’t worry about what other people think and she has no desire to “fit in”.  She definitely marches to the beat of a different drum.  And that’s okay.  (at least I’m trying to convince myself of that.)

In a few weeks, we will let Hilary “go” for another year and we can only hope that she makes the best of the opportunities she’s been given to become the best that she can be. 

Sunday, August 15, 2010

One of Our More Exciting Sundays

Today goes down as one of our more exciting Sundays.  *Yawn*

Mark and I, together (which is totally unusual) cleaned out and organized our linen cabinet.  I found the 50 pillow cases I knew I had but could never find.  It's amazing how much stuff you can shove into the bowels of a linen cabinet and never find ... until you pull every.single.item out of the cabinet.  We've been married almost 21 years, lived in no less than five houses and changed kids' bedroom decor at least 10 times.  We have a lot of linens.

Goodwill now has a lot of linens.

After that, I spent an hour (yes, an hour) cleaning the lint out of the lint screen area of the dryer.  That was almost more fun than I could stand.

After that, I took a nap because after walking 7 miles in 100 degree weather at the crack of dawn, organizing the linen cabinet and cleaning out the dryer lint .... I pretty much had the life sucked out of me.

After I woke up, I mopped floors.

Bet your Sunday wasn't as much fun as mine!

Have a great week and remember ~

Kind words can be short and easy to speak but their echoes are truly endless
Mother Teresa

Thursday, August 12, 2010

Not Much Going On

Not much going on at the Ranch.  (I don't know why I call it the "Ranch" - we don't live on or near a ranch?)

Eric and Mary are back into the swing of school.  Mary is back on schedule doing her homework .... at 4:30am the morning it is due. Eric, he's back to procrastinating and yelling and fighting doing his homework every step of the way. Who says this is "the most wonderful time of the year" ?

This year, I signed Eric up for after school care a couple days a week - it gives him an opportunity to hang out with his school friends.  It's pretty bad when you have to pay for your kid to have "play dates", eh?

Mary is gearing up to start the college admission process.  She's pushing herself hard this year with the hopes of getting scholarships.  She's still considering colleges in St. Louis as well as Northern Arizona University.  The most important thing to her is that she gets far away from home.  I'll miss her.

Hard to believe our trip to St. Louis is just around the corner.  I'm actually looking forward to it. I really miss our St. Louis friends and our St. Louis doctors.  I'm hoping to have some time to just relax and visit.  October in St. Louis is fabulous.  Fall colors, cool temps, sweatshirts and Starbuck's Pumpkin Spice Lattes.  It doesn't get any better than that!

And, the news of the week ....

98 days, two hospitals and three nursing/rehab centers later .... my mom finally made it back home after breaking her femur back in May.  She's still very weak and requires 24/7 supervision and assistance, but she made it home.  Remarkable.  Really, it is.  What's even more remarkable is that my mom is three years post GBM resection and there has been no tumor recurrence.  Statistically improbable, if not impossible. But, here she is.

Life is good .... make today a good one!

Friday, August 06, 2010

And . . .

To answer Christy's questions, I used Picnik to make the collage with Eric and the California letters. It's a great, inexpensive program that you can have a lot of fun with. 

As for the glasses, I'm pretty much a full time glasses wearer now (another fallout from getting older).  I used to wear contacts for distance, but have to wear readers at work to see my computer and what I'm working on. The combination of wearing contacts and readers all day long put too much strain on my eyes.  So, I've decided to ditch the contacts, wear glasses for distance and take my glasses off when I'm doing close up work. I even have prescription sunglasses now. How sad is that?!

So there you go, more than you wanted to know about my new glasses!

Happy Friday friends. :)

Thursday, August 05, 2010


As you may have noticed lately, I've been a bit preoccupied with the fact that I'm old.  I'm having a difficult time coming to terms with the fact that in less than a year, I'll turn 50 freaking years old.  Say it isn't so!  I have this illusion that because I have an 8 year old,  I can't possibly be turning 50.


My thirties and forties were a complete blur. I spent the majority of my thirties consumed with Hilary and doing everything in my power to make sure she learned to hear and talk.  I was in the early years of my legal career when the decision was made to leave my family, friends and give up my career to move to St. Louis to give Hilary the best chance at achieving what I felt was important for her.  At the age of 37, along came Jack and then life got exceedingly difficult.  My late thirties and most of my forties were all about Jack.  Initially, it was all about keeping Jack alive. Then it became about making all "this" go away.  There were few moments of joy, lots of stress and much sadness over the last fifteen years. I lived with such a myopic view of the world because I was so focused on what needed to be overcome.

I approach 50 more relaxed and mostly at peace with my life. I want to work less, play more and truly take the time to enjoy the moments.  I want to have fun.  Yet,  I also fear what the next decade may bring.  However, I can now accept that I'm not in control and that there is absolutely nothing I can do to change the inevitable.

As I inch closer to the half-century mark, I'm optimistic, hopeful and just a little bit scared.

And, let's face it people ...  50 is old!

So, bear with me my friends. This getting old stuff is really hard.


Old age, though despised, is coveted by all.

Monday, August 02, 2010

Tip for the Week

Always check the pockets of little boys' pants before washing.


Yesterday we celebrated July/August family birthdays.  Because it was unseasonably cool for August 1st here in the desert, we bailed Jack from the house and took him with us to my sister's house.  He was very happy about that.

Then again, Jack is always happy!

Eric was also very happy to have me take his picture:


Speaking of Eric. Last week, I asked him how his day at school was.  He told me that some of the kids in his class cry a lot.  I asked him who was crying.  He said that a girl in his class was crying because the math worksheet was too hard.  I asked him if it was hard for him.  His response:

"No mom, I did fine with it. But, just so you know, I don't want to get too good at math because then I'll be a math geek and math geeks are nerds and I don't want to be a nerd.  I've been trying to get rid of these glasses for years!"

Apparently, nerds wear glasses and are good at math.

Finally, I've determined that inside lighting is definitely better than outside lighting when you are old:

(but thanks for all the kind comments on the last picture of me and Jack).  

Happy Monday friends and thanks for checking in!