flowering path

Easter and thoughts..........

2010-04-05T11:31:00.000-07:00

Well Easter was a great time, the weather was a little warm but all in all a great day. Lots of wonderful food, hilarious conversations with cousins, hugging on aunts and uncles and assorted friends. We even got to celebrate a young man's birthday! Woohoo Zachery is now the big 13, wow a teenager in our midst once again. Most important my girls got to hang out with all of them. With both my parents gone it can be bittersweet. I try to focus on the good of these events but it can be highly emotional for me. I love my family, they are a great group of funny, boisterous, loving people and here are a few pics of them.

Make video montages at www.OneTrueMedia.com

Bright and early this morning I had an appointment with Lila's Special Ed teacher, she is a veteran of Special Education and a great woman. Lila has been having a few issues lately with behavior and focus. We spoke of how Lila is who she is which is a drama queen and also how she is really a typical kindergardner. I know this can be hard for me since this is her 2nd year in Kindergarden and I feel she should be farther along with her emotions and focus. She gave me a few items to work on with Lila. Reading and role playing being priority. Not sure how I am supposed to squeeze this in but we love our little chick and make it work. So it seems I have had a little dusty gray cloud follow me most of today and I have tried to shoo it away but it has some staying power evidently. Sigh........I know I am not alone in feeling overwhelmed but it sure the heck feels like it right now.

My Montage 4/1/10 at OneTrueMedia.com

2010-04-01T15:05:00.001-07:00

Make an on-line slide show at www.OneTrueMedia.com

So upset~

2010-03-02T07:37:00.000-08:00

First and foremost I know I am blessed to have a job in this economy, but I am so upset right now I want to throw up!
I just heard the health insurance plan I pay for at work is going away! This one was the best of the 4 plans we had access to and I pay out the nose for it. The change will leave us with only the 3 options and they suck! My chest is so tight right now, I have to remind myself to friken breathe. I work for a hospital and this is the kind of crap insurance we get. No wonder they can't keep good help. I am so ready to jump this ship and have been actively looking, especially within the school district. I am willing to take a cut in pay if I can be home with the girls in the Summer. Of course I know I am way over qualified for a lot of the positions posted but gosh give me a chance people.
I am so upset. I want to just quit and say screw it, let us live on a wing and a prayer, however my A type personality will NOT let this happen, dammit. I have NEVER been uninsured in my LIFE!! Now I have 3 more people to take care of and they pull this shit! Last year we didn't even get raises, and I stayed. Now we get a "raise" and the insurance is gonna eat it up and then some. I want to cry and strangle someone at the same time. Boy talk about multitasking.........
God help me.

I love a Gearhead at OneTrueMedia.com

2009-11-20T11:36:00.001-08:00

Make an on-line slide show at www.OneTrueMedia.com

2009-11-11T10:01:00.000-08:00

I took this from a WS daddy and made it my own. It says it all.

Williams Syndrome is a deletion of about 26 genes from the long arm of chromosome 7.1

There is a vastly greater amount of genetic material that makes Lila just like everybody else

My Pumpkins

2009-10-23T08:54:00.000-07:00

Nothing like picking pumpkins in 80 degree weather. Gotta love Texas.

How can this be?

2009-10-08T08:00:00.000-07:00

How can it this be? How can it be that I have become so emotionally tied to people. Many people are the ones that I have been blessed to see everyday, my little family, my sister Anna and Rudy, their smart, beautiful daughters, my cousins and their precious children. My Crypts my rocks here at work, we have been through many rough times and many awesome and inspiring times together, we love each other, no doubt about it.

BUT others are people that I have not even met in person.

These people are people I have "met" through the disability called Williams Syndrome. I worry for them, I cheer for them, I embrace their quirky stories and their deepest sorrows, their rejoying in a milestone or accompishment, my stomach gets tied in knots when they post school and bus situations, looming operations and the oh so terror inducing PLAY DATES:) (oh of all things). I pray so hard for them that many times it brings me to tears. Me, many years ago the young person that more then one time stated "I won't have children". Silly naive me.

Here I am vunerable and humbled by love. It is overwhelming sometimes. The fear I feel for them, as one mom put it the always looking over the shoulder and waiting for the other shoe to drop, not just for myself for for them. Disability, retarded, over stimulated, anethesia, failure to thrive, cardio, renal, thyroid, elastin, short bus, IEP, ARD, calcium and creatine. WORDS they are all words, but for many of us they are dreaded and make our throats sieze up. Preexisting condition, CoPay, Insurance, denial, appeal , Cobra, equally sweat producing.

These people and Williams Syndrome make me what I am now. I am appreciative for every single minute of every single day. I love unconditionally. I here, and not in the past.

How is that? Here is just one example of how. I gave my heart to a boy whose name is Jake. His mom and dad reached out, I was there. I grabbed for them and grabbed all of what they had and what will be. Yesterday October 7 he was wheeled into surgery, we were walking into our own Cardiac appointment in a whole different State. My family was walking the same walk all my WS friends have walked before, praying for a good trip, prep, echo and a sit down with the cardiologist, all for a little person not even 3 ft tall yet. During our visit we wore our Bless Jake's Heart t-shirts. Many people noticed, and liked them, some knew the verse, but more importantly some asked Who is Jake? 5 people we told of Jake and what he was going through, even my husband had his "card" in his wallet and shared with them. From this we have educated 5 more people about WS and gain one new Mom and family into our hearts. How is this? Jake and Lila brought a little girl no more then 2 years old into the Texas WS family. I met with the mom after her hours long cardio appt and exchanged email addresses. How is it that me, a previously self absorbed chick could reach out to a complete stranger in the middle of a large hospital waiting room? How is this? Maybe I need to stop asking cause it is happening.............

Make photo slide shows at www.OneTrueMedia.com

Happy Birthday my Dear Ava!

2009-09-28T07:39:00.000-07:00

9 years ago a little after midnight our firstborn arrived to brighten our lives. Ava Izabella Rich, our little "Missy Ava". She is a love like no other, I worry about her but in my heart I know she will be just fine (or we will die trying:). She loves all things blue, wears her heart on her sleeve, enjoys her "shows", puts up a fuss when prodded to read, wants long hair, enjoys making art showin her family (we have progressed nicely from stick figures with helmet hair to looking very stylish). She like shoes, hurts feelings with her blunt comments and feels terrible afterwards, digs dark colored skinny legged jeans, she is loyal to her friends, weeps at sad movies, loves her sister even when she is aggravated by her:)scratches her mosquito bites way too much, swims fast, has a good "hat head", still has her chubby baby wrists, paints her toenails but not her fingernails(?)may be a early vegetarian , has a section of hair that is crinkly, plucks the peas out of the pod then eats it, is great with directions and remembers how to drive somewhere, thinks mommy should drive a car "without a lid" (convertible), likes sports, is a quiet soul, likes fast cars, loves to visit with her cousins, enjoys milk immensley, likes all animals, wants a motorized scooter, sings but not a dancer. Above all she is a wonderful beautiful young lady and we love her with all our hearts. Happy birthday my love!

Photo and video editing at www.OneTrueMedia.com

Frustrated!

2009-09-25T12:21:00.001-07:00

We had a parent teacher meeting at Ava's school, I know I was upset especially when I realized how aggressive I was driving, thank goodness it was light traffic:)

Unfortunatley her teacher had to leave since she was still ill so we met with Ava's counselor. A little background first. This is Ava's second round in 2nd grade. She didn't "fail" last year but her teacher and reading teacher felt she had not mastered the work as well as her math score was very low. She also had a issue with lack of confidence/immaturity. She would "shut down" when she was overwhelmed and would disolve into tears.

OK, so during the summer we made it a point of getting her more involved with group activities and sports, she did very well and really opened up. NOW we are back to square one, on the weakness section is noted, always sad and shuts down. URGGG this is only the 7 week of school. I want to cry myself.

The counselor is already working with Ava in a small group setting called the Tiger Leaders, these are children that have been held back for whatever reason and she works with them to take on a leadership role with their current class and work through any issues they may be experiencing. She feels that Ava can really excel if she applies herself however she admits that Ava is very quiet and is a "pleaser" and lacks confidence. John and I are already at wits end. We heap on praise on both girls (sometimes we joke that we can make those positive affirmation posters for a living) If you get on her she just crumbles, then you have just lost her. I had already posted on the WS site for suggestions regarding therapy for siblings of WS children and the majority said do it. I know this is not all WS related but we all know that a child with a disability does tend to garner a lot of attention. Combine that with Lila's over the top personality and Av easliy fades into the background. I have a list of therapists supplied by the school (parent generated) and I am familiar with one of the groups so I guess that is the next route we will need to take. I hate to think of my child as depressed but I am willing to get her evaluated. (SIGH)Sometimes being a parent just sucks and being afraid that you are failing your child sucks even more.

Rays of Lila

2009-09-17T14:51:00.001-07:00

Photo and video editing at www.OneTrueMedia.com

My Sister Anna the Strong

2009-09-16T12:59:00.001-07:00

Well this morning John and I went down to the medical center to see Anna. I picked up a few items for her some magazines, lotion, cards etc. I expected to see her all laid up and in some pain………………….THAT GIRL was not suffering at all! (Thanks be to God). She had her phone plugged in and getting all the low down on all the goings on in the outside world, TV tuned to her HGTV and her best friend and Rudy at her beck and call. Suffering HA!

Her belly is showing more bruising today (and I have photos) and she is waiting to urinate but other then that she is FINE! She cracks me up. Of course me being the anal one wants to know if she has every thing ready at home after she is released on Thursday (on condition that she goes pee pee). “Like what”? she asked, well I don’t know the stuff you are going to be able to eat??? Soups, broth, jello, pudding yada, yada, yada. I evidently am worrying for nothing. She feels she is going to be cruising the supermarket with no problems dragging Rudy the whole way. Hhmmmm. The Margarita (our mother NOT the drink) in me has a wait and see attitude. The main thing is she is happy happy happy. She is very pleased with the care she has at Methodist, her doctor, which is Dr. Garth Davis from Big Medicine on the Discovery Channel. She loved her anesthesia guy (she knew his whole life story as she was about to go under) and her male nurse (“he is so young and cute”) not that Rudy noticedJ My sister is a totally roasted NUT.

We sat and chatted for a while and went over some of the stuff she learned during her pre surgery bariatric classes, she knows what she needs to do and I hope Rudy doesn’t have to call me to come crack the whip she is not pretty when she get stubborn, believe me I know. She was getting a little sleepy, she didn’t sleep very hard last night since they had to continually check on her and her vitals. I think she was beginning to feel a little pain/soreness since she mentioned she was gonna push “the button” for the pain medication soon. All in all it has been good, she just needs now to introduce more liquids today, tonight and tomorrow. If all is flowing well she will begin her new journey at home.

I promised to set her up a blog so we can document her journey. Not sure what the title will be but we will keep you all in the loop for now I am going to post this on mine today w/photos. She is super excited and so am I. As we all know she is already Hell on Wheels I guess now I just have to hitch up and get ready for the ride. Thanks for all your prayers and keep them coming, the next months are going to be hard. No doubt about it. For now she is doing great and this is her new beginning, a Re Birthday (as a few friends call these types of second chances) is what we have. Check in on us and hold on for the ride!!

PRAYERS PLEASE

2009-09-15T08:34:00.000-07:00

Today is the day, a new beginning! My sister Anna is undergoing gastric bypass today. Her already full life will be altered in such a positive way I just can't contain myself! She texted me this morning telling me to prepare for marathon mall shopping, something that was pretty hard for her to do. I welcome it! We will have a blast. I love my sister. I wish our parents were still here to see and support her, our mother always worried about her and her weight and I think she would be sooo jazzed.

A new day and new beginning. Bring it on!

Perimenopause

2009-09-09T09:59:00.001-07:00

I think I am smack at the doorway of perimenopause. I have been having a really hard time lately. My medication for despression doesn't seem to be working, I have no desire to accomplish anything. I am tired yet I can't sleep. The last afternoons I could fall asleep standing up.

I don't want to cook and eat healthy, for me that is a warning sign right there! I am not a fan of fast food but lately I don't even want to think about planning a meal. That is itself pisses me off cause then all my weight loss just goes out the window. When I feel fat I feel like crap, my lower back hurts and my face feels puffy.

I am just muddling through. My moods range from pissiness to a desire to cry my eyes out. Small crap that in the past would just pass now sends me to the moon. Lately I have just spewed a response without a blink of an eye, like what I am really thinking just lands at the tip of my tongue and delivered. I am sure John has noticed I no longer "pick my battles" cause I no longer hold my tongue BAM all out confrontation. Many times it seems like just a flick of a switch and I am over the top. It just sucks.

My hair is falling out enough that I could weave a tarp out of the amount that comes out in the shower. UGH. How much draino can you store under your sink without calling out hazmat?

Sex? whatever~could care less. Memory what memory? I loose my train of thought in a middle of a conversation and at this point every one needs to wear a damn nametag. Family included.

My periods are from HELL. Never in my life had I had to deal with such a situation. I have a appointment for my well woman check up in October, I don't care if they have to strap a hormone patch to my forehead, something has to give I can't live this way. I feel like a slug.

A car guy

2009-09-01T12:06:00.001-07:00

Being married to a car guy has it's perks!

First day of school!

2009-08-24T12:47:00.001-07:00

Lila G. waiting on "da busss"

Ava packed up and ready to go (she "needed" everything)

My big girls! Another school year another year to make good friends!

Where are the parents? Story posted from WS list

2009-08-21T08:17:00.000-07:00

The "story" in black text is copied and posted from our Williams Syndrome list and I would like to comment before we go on. Recently I have been very busy being involved with our local WS Conference (August 29th), back to school for our girls (August 24th) and attending a few local disability sessions out here in Katy. Of course as any married person knows if one parent is busy then the other parent steps up. John by no means complains about being with the girls, he enjoys them, unfortunatley his job is a booger and those of you close to us know I am using a nice term for it. One night after I returned home I was rehashing some of the open forum discussions, one being my comment that at one point "the meeting turned into a ISD bashing session" and that it was sad to think of the "fight" ahead of us. He made the comment of "I don't think all of this (going to these meetins/conference) is worth it". I really didn't know how to react to that statement. At first I guess I was hurt, that he didn't feel I was able to put into action any of the information that I had been given. We talked a little more and got away from the subject. Sleep came eventually and life moved on, that was on Tusday today is Friday. I am not angry and nothing against John maybe he has just brought to light that as much as I try to get things right in regards to schooling/ARD/IEPs for Lila (possibly Ava too) that I will always be wondering if it is the right thing because the school district is only looking out for themselves. As much as this is hard to hear, it is true. As I think back to a different meeting. The organizer of the meeting stated at the end of this casual get together that she hoped that the persons/organizations present would band together and become a voice to a certain ISD, to push to right the wrongs she saw and (many others) have experienced. The persons/organizations present at that meeting already do a lot for the disabled but through their parents/caregivers etc, so this statement caused a stir. I am going around in circles here. Basically, there is too much to do, not enough hours in the day and not enough fighters out there to fix our schools and do the right thing for all children. We know Lila is blessed to have great health and John and I are comfortable finanically. Yes, I work outside the home, my family needs my attention and unconditional love, but am I able to be the face needed at the school board meetings or where ever I can? Yes, I think I am. Do I think this is "worth it" as John asked, yes, especially when so many other parents are in the situation below. Am I gonna turn into a flaming liberal thinking I am gonna right all the wrongs and be a savior of all, uh no (but when I can walk on water ask me:) Ok so reality sucks plain and simple. Sure there are A LOT of parents that don't give a crap, they can deal with it where ever God puts them at their lives END. I myself do NOT want to look in the mirror and see a person that said NOTHING.

Where Are the Parents?
> By Sue Stuyvesant, Parent
>
> Hey everyone. For those of you who don't know me (I'm only an
> occasional
> poster) I am mom to Michelle, 9 years old, microcephalic,
> athetoid/spastic CP, cortical visual impairment, seizure disorder --
> and CUTE! OK, now for the reason I'm posting.
>
To make a long story short, earlier this week a question was asked by
some nitwit official as to why there weren't more parents (of special
needs kids) involved in the local PTA and other issues that have come up
that directly involve our kids. His question, which was passed on to me
was, "Where are the parents?" I went home that night, started thinking -
and boy was I pi**ed - and banged this "little" essay out the next day
on my lunch break. By the way, I took copies of this to the school board
meeting that night, gave it to a couple of influential people and it
WILL get around...... .......
Where are the parents?
They are on the phone to doctors and hospitals and fighting with
insurance companies, wading through the red tape in order that their
child's medical needs can be properly addressed. They are buried under a
mountain of paperwork and medical bills, trying to make sense of a
system that seems designed to confuse and intimidate all but the very
savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift
their 100 lb. daughter onto the toilet. They are spending an hour at
each meal to feed a child who cannot chew, or laboriously and carefully
feeding their child through a g-tube. They are administering
medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency
rooms, waiting for tests results to come back and wondering, "Is this
the time when my child doesn't pull through?" They are sitting patiently
in hospital rooms as their child recovers from yet another surgery to
lengthen hamstrings or straighten backs or repair a faulty internal
organ. They are waiting in long lines in county clinics because no
insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2
or 3 hours a night, and must constantly be watched, lest he do himself,
or another member of the family, harm. They are sitting at home with
their child because family and friends are either too intimidated or too
unwilling to help with child care and the state agencies that are
designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they
try to make up for the extra time and effort that is critical to keeping
their disabled child alive. They are struggling to keep a marriage
together, because adversity does not always bring you closer. They are
working 2 and sometime 3 jobs in order to keep up with the extra
expenses. And sometimes they are a single parent struggling to do it all
by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything. They are trying
to patch their broken dreams together so that they might have some sort
of normal life for their children and their families.
They are busy, trying to survive! ~ THE END ~

Good friends

2009-08-14T14:39:00.001-07:00

I am blessed to have some great friends in my life. One has entered a new phase of her life and we were fortunate to be able to send her off with a suprise manicure, pedicure and a wonderful Italian lunch. We love you Liana, may you and Nicholas have happiness for forever and ever!

Oh the poor neglected blog!

2009-08-09T16:51:00.000-07:00

Oh the poor blog has suffered, I have discovered FaceBook! Somehow I use Facebook more for me then to update on our life, I like the blog for that especially with my Williams Syndrome friends. Seems we can post a whole situation and then just chat on Facebook.

Not a whole lot to blog about which can be seen as a blessing in a way. The summer has been super hot and lots of time spent out by the pool, we are browner then the bottom of a skillet (ok not a big stretch for me). My children are offically MOCHA with a expresso shot:)

Ava has been busy with YMCA day camp, her tutor and lots of girlfriend playing. At camp she made some great friends and even used a zip line! She had a blast. Unfortunatley she is more then a little upset that we will be holding her back in 2nd grade. We feel it is the best since she has really blossomed this summer and her previous year, while not "failing" she just wasn't ready for 3rd especially with the faster pace. We are hoping for a super second grade. John is concerned about how she will be picked on because we all know how children can be, but we have tried to prepare her in the event of any flak. Hopefully her true friends will shine and accept her non the less. I figure if I screw this up as least that is one more item she can gripe about to her therapist in the future!

Lila suprised us all and enjoyed YMCA day camp. The first few days I was a nervous wreak! Everyday when I picked them up, the were sweaty dirty and exhilerated. At the end of he first week Lila was awarded the "Happy Camper" award for the most excited camper for the whole week. We are blessed that John works out of the house so we really didn't need to send them anywhere for childcare but we felt it was the best for them to be out of the house and having fun outdoors. I always prefer outside instead of glued to the "idiot box". Lila is now doing her YMCA swim lessons which have been a lesson in patience on my end. Most times I try to avoid eye contact so she will at least give her instructor some attention!

Summer has been a booger due to the heat but we have managed to still have fun. Such as painting the second floor, woo hoo! However the outside needed to be painted and hardy plank installed, we thought it best to pay someone instead of sucumming to heat stroke. We also had a great time with Lila and Uncle J battling it out on Guitar Hero. Both of them are stars in my eyes!

My sister's surgery is scheduled for the 1st of september and I am sure all will go according to our plans. Her girls are all back at home and my poor brother in law is once again bombarded by 4 highly opinated women! God bless my Rudy!

My prayers have been extra heavy recently for some of our Williams Syndrome buddies. Many days I want to land on the pity parade and I have to remind myself there are so many of our WS kids and their parents that could only wish for a boring day and a doctor visit without additional pain and hospital stays. Each person has a cross to bear but I can only wonder why some much is heaped on some. I pray for them always. The Gulf Coast Region is preparing for our first conference and I have been honored to be able to help our chairpersons put some items in place. We can only hope that all families are able to make this event and come away with information and comfort of knowing they are not alone. Our most recent visit to TCH was just a annual follow up and we are blessed in that we will not be seeing our friendly nephrologist for another year.

I managed to sign up both girls for CCE at our church. I am late in getting Ava her First Communion but hopefully the good Lord won't hold it against me. Lila will also be in a class and I have volunteered to help out if needed. I am sure I will be re learning quite a lot. I have not really taken the time for bible study and hopefully we are now at the time in our lives for me to take some time for me in that area.

The pictures posted are just a taste of the summer so far! Best to all ~ Tes

Please Help

2009-07-01T12:04:00.000-07:00

A Publication of the Williams Syndrome Association / June 2009

Greetings!

Have you ever heard the phrase, “It takes a village to raise a child?” Well, it takes a community to make a difference and the Williams Syndrome Association needs your help today!

The WSA strives to enrich the lives of individuals affected by Williams syndrome through education, support and research. We operate music camps, host bi-annual national conventions, publish quarterly newsletters, fund groundbreaking research, connect families with each other, facilitate regional programming and so much more.

Whether you are a parent, a neighbor, a teacher or a friend of someone with Williams syndrome, we encourage you to be an active part of the WSA community and ask you to make a gift to the WSA Annual Fund today. Your gift, whether it is $1 or $1,000, will make an immediate difference in the life of someone with Williams syndrome. It may help a low-income family attend a national convention, provide funding for the WSA Patient Registry or enable the WSA to launch new initiatives such as additional camp locations, an IEP Resource Center or a comprehensive awareness campaign.

Make a gift and pass this email along today. Remember, it takes a community to make a difference!

To make a gift by credit card, visit www.williams-syndrome.org and click on “Make a Donation” or call our office at 1-800-806-1871.

If you prefer to send a check, payable to the Williams Syndrome Association, please mail it to:
The Williams Syndrome Association
570 Kirts Boulevard #223
Troy, MI 48084

On behalf of the WSA Board of Trustees, staff, Regional Chairs, members and friends, thank you for being a part of our growth and for your support.

Warm regards,

Terry Monkaba
Executive Director and Allison Lyon
Director of Development

P.S. Please consider making a gift today by visiting www.williams-syndrome.org or calling 1-800-806-1871. Don’t forget to send this email to your family and friends so that they too can help make a difference!

Random bits'o LOVE

2009-05-29T14:32:00.000-07:00

Make video montages at www.OneTrueMedia.com

Why do I have to feel this way?...........

2009-05-18T12:35:00.000-07:00

We had a great time at the WS picnic here in Texas. It was hot but not unbearable. A fantastic turnout of families was had and our girls enjoyed themselves immensly.

So......Why do I feel this way? It is now Monday and I am still so very sad. Saturday night with Lila snoozing beside me I felt scared out of my mind and in tears. So many emotions from one day. One day of seeing and hearing the past and experiencing the future. The future of anxiety, tight hamstrings and social awkwardness. The future of never really being able to relax, so many tired parents craning their necks to keep track of their adult children wandering too close to the pond or out onto the playgrounds.
Honestly the future scares me, so much work, so much fight, SO MUCH. I found myself second guessing my stand on her schooling, her behavior, her medical and emotional health. Hell I am worried about my mental health:) Sunday, my deceased mother's birthday, was a blur. Never really reaching my normal self, just kind of sputtering around, do what had to be done. This morning dawned much the same but off to work with a laundry list of worries and "to do". A email sent off to the school, email sent off to the Director of Special Education, phone messages left for dr. s and their nurses. Rescheduling of dentist and the rearrangement of work to be able to participate in Field Day ( times 2). Trying to stay so busy that I won't cry. My day job almost over, maybe I can cry in the van on the way to gymnastics. maybe not...........

A posting said like no other............

2009-05-15T09:38:00.000-07:00

This is from a WS mom. She has said it all with this post. No one very truely knows how you feel unless they have been there. Wonderful people try but its just......well its like this..............

http://louieandace.blogspot.com/2009/05/cicada.html

2009-05-06T07:31:00.000-07:00

I know we all get caught up in "the have to" aspect of our jobs of raising children both typical and disabled. I read this and had to stop myself from saying to myself "well Lila will never do or accompish that". At this point in Lila's life who am I to already determine what she will or will not be able to do? Everyday our children grow not just physically but mentally and emotionally, some a little slower then others but it gets there non the less.

Ava and Lila I am proud to be YOUR mommy, you have brought out the best in me.

I will always and forever strive to make you proud of ME.

The Price of Children

Here is something absolutely positive for a change. I have repeatedly seen the breakdown of the cost of raising a child, but this is the first time I have seen the rewards listed this way. It's nice.The government recently calculated the cost of raising a child from birth to 18 and came up with $160,140.00 for a middle income family.

Talk about price shock!

That doesn't even touch college tuition.But $160,140.00 isn't so bad if you break it down.

It translates into:
$8,896.66 a year,* $741.38 a month, * $171.08 a week.* A mere $24.24 a day!*

Just over a dollar an hour.Still, you might think the best financial advice is: don't have children if you want to be 'rich.' Actually, it is just the opposite.

What do you get for your $160,140.00?

* Naming rights. First, middle, and last!* Glimpses of God every day.* Giggles under the covers every night.* More love than your heart can hold.* Butterfly kisses and Velcro hugs.* Endless wonder over rocks, ants, clouds, and warm cookies.* A hand to hold usually covered with jelly or chocolate.* A partner for blowing bubbles and flying kites.* Someone to laugh yourself silly with, no matter what the boss said or how your stocks performed that day.

For $160,140.00, you never have to grow up.

You get to:* finger-paint,* carve pumpkins,* play hide-and-seek,* catch lightning bugs, * never stop believing in Santa Claus, the Easter Bunny or the Tooth Fairy.You have an excuse to:* keep reading the Adventures of Piglet and Pooh,* watch Saturday morning cartoons,* go to Disney movies, and* wish on stars.You get to frame rainbows, hearts, and flowers under refrigerator magnets and collect spray painted noodlewreaths for Christmas, hand prints set in clay for Mother's Day, and cards with backward letters for Father's Day.

For a mere $24.24 a day, there is no greater bang for your buck.

You get to be a hero just for:* retrieving a Frisbee off the garage roof,* taking the training wheels off a bike,* removing a splinter,* filling a wading pool,* coaxing a wad of gum out of bangs, and * coaching a baseball team that never wins but always gets treated to ice cream regardless.

You get a front row seat in history to witness the:
* First step * First word * First day of school
* First ER visit
* First bra First date * First time behind the wheel.

You get to be immortal. You get another branch added to your family tree, and if you're lucky, a long list of limbs in your obituary called grandchildren and great-grandchildren. You get an education in psychology, nursing, criminal justice, communications, and human sexuality that no college can match.In the eyes of a child, you rank right up there under God. You have all the power to heal a boo-boo, scare away the monsters under the bed, patch a broken heart, police a slumber party, ground them forever, and love them without limits, so one day they will, like you, love without counting the cost.

That is quite a deal for the price!

Love & enjoy your children

For those that have attended conferences .....

2009-04-24T14:48:00.000-07:00

Hello bloggers, for parents I have some questions.

If you have attended some WS conventions either big or small

What would you have changed or had done differently?

Was there anything in the childcare that you wanted/not wanted?

Ideas that worked well or suggestions on how things were set up etc. We, the Gulf Coast Region will be hosting a one day convention of sorts (august 29, 2009) and I am in charge of setting up childcare. I have few things already in place but since I never attended a WS convention I am appealing to those that have "been there done that" for pointers or tales of disaster ideas (see exasperated picture for comic relief:).

Hair "knots" and 14 hours of sleep

2009-04-16T14:01:00.000-07:00

This is what you get when you are sleepy tired after school, don't take your hair down AND sleep straight until the next morning. Ah life is gooood!

Cucumber conversation

2009-04-13T14:51:00.000-07:00

Lila help me unload the groceries please...

Ok Mommy, ohlook a zuchinni!

No that is a cucumber.......

Yes, I like cucumber!..

I know you can have some later with dinner.....

ok dinner,yes, yes i like dinner Mommy.....SILENCE...............

Lila? where are you? HEY where is the cucumber!??............

CRUNCH!

So much for waiting for dinner.

Autism Awareness Day

2009-03-31T08:41:00.000-07:00

KATY AUTISM AWARENESS DAY
Mayor Don Elder, Jr. Proclaims
Saturday April 4, 2009
Katy Autism Awareness Day
VFW Hall
6202 George Bush Dr.
Downtown Katy, Texas
10 a.m. – 2 p.m.
Games, Food, Drinks, Exhibitors, Music, and More!
Live entertainment will be provided by:
The Lost Dogz, a gifted mixed group of young people, with autism and without,
between the ages of 15-18.
Lost in Tyme, a local club and show band playing tunes from the 50’s thru the 80’s.
Refreshments will be available. Food will be served by Vida Loca.
For exhibitor information, contact Laura Gore at lg1@consolidated.net

She is Williams Syndrome........

2009-03-11T12:22:00.000-07:00

This is how our 8 year old tells anyone feeling the "wrath" of Da Lila. I rarely post of just Williams Syndrome but it seems that some people I become friends with feel they don't really know me since I say "I have two children", not two children 1 typical and 1 with a disablity. Its almost comical like I am being secretive and I am a mystery. So maybe I should say I have Ava a warm blooded young human and Lila is a Williams syndrome. uuuhhh yea.

So for those of you happening onto my flowering path be warned. I have a child with a disability, if you must run please do so now and in a orderly fashion...BUT before you go just consider what you are missing, she is a true joy and a giver of all things fun and lovely.

Its not like I don't "see" Williams Syndrome cause I certainly do. Williams has changed our lives, at least what we thought our life would be like, I don't think we ever kidded ourselves that we would have a pristine little existance, but my version didn't include a child with a disability. I remember sometime after the diagnosis as I was questioning the universe, my husband saying "didn't you ever think our child could have a disability"? Uh what? Hell %@^# NO. We went through genetic testing and amnio, i thought i had it covered.

Lila does have a lot of the issues WS children deal with but by and large has been spared some of the very serious medical situations. Looking back it was so overwhelming with all the "some thing is not right" thoughts that I might have gone insane if not for our Ava. My husband and I were so busy with Ava at 2 years old, our jobs and then my mother becoming more medically dependant that we just kept putting one foot in front of the other. Now here we are 6 years later. I know I missed a lot of the "firsts" that both my children experienced due to being caught up in just getting the right therapies and appointments etc. I think that is the only thing I would ask to have as a DO OVER.

A lot of people are enpowered just by having children but when you have a child with a disability you have to grow at least 5 feet taller and get some thick skin that even the HULK would be envious of. For those of you just starting out it's gonna be scary, anything unknown is scary and even when you know the beast by name you still get the c*%#@ scared out of you with every new arm and leg it grows. What I do know is........

Ava is no less important then Lila. You either figure out how to calm two crying kiddos or just start crying yourself. I pick up Ava from her tutoring it can be a pain for my schedule but you know what? That is the time for just her and I. We chat in the library, pick some books and reconnect. She is an awesome kid and is so often overshadowed by the popular and loud Lila.

If any "professional" tells us No they better have more then "that's the way we do it here" for an answer cause that does not fly with me anymore (husband is still learning:).

I will say I am sorry when I truely am, not just to appease someone or start a request with it. I will say that was hard for me to do, it would be "I am sorry but that doesn't work for Lila". Now it is "This will not work for Lila so lets figure out something what will".

I will tell a child to "straighten up and back off" when needed and I don't care if I didn't give birth to the little angel (que dripping sarcasm).

I will ask for an explaination and if I still don't get it, someone will have to repeat and repeat again or get someone who can explain it clearly.
I seem to automatically ask for a copy of any results regarding my kids. I am super at making tabs and now how a book of Ava as well as the 6th edition of Lila.

NOW THE NUMERO UNO!!!

I am no longer embarassed to have all the contents of my purse spilled out for all the world to see, as I try to unfold a umbrella stoller with a crying kid, in a busy parking lot and all the while holding in my urge to pee.

~Tes

LOST

2009-03-04T07:27:00.000-08:00

If anyone has seen the movie Lilo and Stitch this is a picture of where he feels lost and is looking for where he belongs. I am lost and searching. I am Catholic and not sure if this is the place for me anymore. My husband and I know we have raised our girls knowing God but is this enough? I don't want my girls to be searching like I am later down the road. The church we belong to unfortunatley can be stand offish, not sure it that is the right word to use but that is how it feels. Both our daughters were baptised there, now we are looking for our oldest to have her 1st communion. A part of me wants to just end it and say if you want to be married in the Catholic church when the time comes you take the classes and the sacrements. I have a friend that her husband is doing this and it has a lot of meaning for him and as an adult he is able to fully understand. I have many friends who are not Catholic and they seem to have so much more chances for interaction such as classes for young children (typical/special needs) as well as classes for the parents/adults. I just don't know where I belong anymore. I love and need God in my life, I am grateful to Him for sustaining me and allowing me to be here for my family, but I feel I need more. More for my children as well as John and I .................................

Webcam this weekend anyone?

2009-01-31T16:28:00.000-08:00

Does anyone want to try the webcams this weekend? i believe my skype name is teresa lopez-rich

i enabled sykpe mode so anyone can look it up. I will take it back to private once we all get contact information.

Web me!

WEBCAM!! now what?

2009-01-23T19:49:00.001-08:00

We got our webcam up!!! .............................now what do I do? I found Michelle's skype address and I think I sent a note to say we had our cam up, like I said I think I sent it. Anyway if anyone has a chance to help me test this out. Send me a post and we can arrange a time. ok.......I guess I will wait...........patiently.............hhmmm........(whistling) actually I can't whistle...................................lalala........la..la..la..lila is helping me wait. Ok she is impatient, I wonder where she got that from??.....................

Lila my big girl!

2009-01-15T08:06:00.000-08:00

This morning we were supposed to send our children to Kindergarden with one light sock and one dark sock. We don't do dark socks, as a matter of fact I can't say I have even seen children's sock in dark colors, oh wait maybe a purple. AAAAaaannnnyyyywwway we don't own any. So I put her in dark tights and added her white sock over it. She had a black turtleneck and a oh so cute dark turquoise,white and black flippy skirt (which she loved and danced). Well why a big girl you ask? Well I will tell you. We went to the bathroom and she told me she had to go potty in her oh so lovely sing song voice. I said ok and helped get her tights down as well as her panties. I walked away for her "privacy" and when she was finished I stole a glance to be sure she wiped herself, she did. I asked her if she needed help to get the panties, tights and skirt back up. She promptly told me "No", I repeated myself since I thought for sure she misheard me. As I watched she told me NO again and started to dig around in her tights for her Curious George panties, fingers furiously working and she got them up. Then she went on to the tights, with a little tugging she did a FANTASTIC job of getting them up without ripping a hole in them! Up went the skirt and a twirl for good measure. I caught myself in the mirror grinning from ear to ear with my hair rollers twitching away. Sometimes I am in such a hurry I miss these events but when I get to see them they take my breath away. I pray for so many more. My big girl I just love her with all my heart.

A recent birthday

2009-01-09T10:07:00.000-08:00

For those of us who recently "celebrated" a birthday, living to die, a passing of another year; a year older; another notch on the tree of life or whatever you may call it. The following was copied from DailyInBox.

Old and Feeling Great
A nurse friend of mine took a 104-year-old patient for a walk in the hospital corridor. When she got him back to his room and sat him down, he took a deep breath and announced, "That was great! I don't feel a day over 100!"-- Mary Cipollone

Life.........oh yea bring it on....................

Tes

Christmas is Coming!

2008-12-22T12:12:00.000-08:00

Christmas is coming and we can't stop it! Now that I have gotten out of my grinch slump I am getting really excited. Grandma T and Uncle Micheal will arrive on Wednesday. Aunt Cathy and Uncle Mike will be joining us on Christmas day and we may tootle over to Debbie's house for more Christmas cheer. My sister Anna and hubby Rudy will be sailing into our home sometime over the holidays with their gaggle of girls. They are so much fun and are a hoot. My girls are of course chomping at the bit to have someone other then Daddy and Mommy around:) Uncle James is around the corner but we always look forward to seeing him and on Christmas all the better. I hope to see my cousins and their families and we will if the timing is right, if not all the more reason to visit before the new year! We are not going to stress over time that we have no control over anyway!!

I hope all of my blogger friends and spider monkies have a warm comforting Christmas and a blessed New Year. I know many are fighting battles that life has thrown before them and I will continue to pray for you and your loved ones. Big Hug Tes

P.S. be sure to check in on me during the holidays, I may need you OR you may need ME!:)

Have you ever.........

2008-12-15T12:13:00.001-08:00

Have you ever been in such a piss poor mood that you are willing to tell your boss to take MORE then a flying leap? To tell the crybabies in your facility to "use your brain and quit asking us to hold your hand for every flippin thing"! and the high and mighty "executives" that "no, no hoop jumping today"!
AND most important to tell your husband that if he dosen't quit harping, yes I said harping otherwise known as bitching, whining, crabbing etc, etc on the most inane crap! That you are gonna lock him out and he can sleep out there in the darn cold damp weather!
growl.....................

Tuck the missing reindeer!

2008-12-12T14:04:00.000-08:00

Dear Santa, I have your missing reindeer Tuck, he is safe and sound and very comfortable. You can leave him here we will take good care of him.

Please and thank you,

Tes

Date with a great guy

2008-12-08T08:50:00.000-08:00

My hubby and I had a date night for my company Christmas party. Even though he wasn't feeling great he went anyway. He is such a great guy and I am truely blessed. He loves me and his girls and we know it. Thanks Babe!

Relish and pink headphones

2008-12-08T08:24:00.000-08:00

Weight Watchers cranberry relish must be made with a small food processer AND pink headphones. No doubt about it. My baby is a pro.

Christmas tree oh Christmas Tree.....

2008-12-08T08:06:00.000-08:00

This is only the beginning..... the girls are decorating the tree this year. Decorated with love it it going to be the best tree ever. More evidence to come. BTW I took the lights away from Lila even though they weren't plugged in, phew!

Children...no, none for me thanks anyway..........

2008-12-05T13:20:00.000-08:00

Children...no, none for me thanks anyway..........

That is how I used to feel before I got married. I had never been a real "kid lover". Maybe because I was the baby of my family so I was never really was around younger ones. During my teenage years I babysat and hung around younger cousins but I did not look forward to marrying early and having kids. I stayed busy well into my twenties traveling and enjoying my tidy little existance. People always say "I can't imagine my life without kids" I can. Funny thing is now I really wouldn't want to. I have been introduced to not only my precious babies but have enjoyed loving some very special kids. They all hold a special place in my heart. I was thinking about most of them today, so this montage is in honor of them. The angels that are in my life and for that I am forever grateful. I am a better person because of them.

Make photo slide shows at www.OneTrueMedia.com

Multitasking, I prefer NOT

2008-11-21T13:02:00.000-08:00

Ok I have come to the realization that multitasking is way over rated. I have decided I am no longer doing it. If 2 loads of laundry as well as the dishwasher doesn't get loaded well then only 1 load of gets done and it will be the most needed items UNDERWEAR!

I have no one to answer to about my home or how often I air out my "good" throw pillows or clean the banisters. If I manage to clean my carpets in the well traveled areas well good for me! I will no longer answer the phone while I am bathing my kiddos, I will suds them up and make elaborate hairdos out of the shampoo bubbles.

I will sit on my butt and watch an entire DVD with my family without jumping up and doing 5 other things. I will reserve time for myself to organize my children's paperwork especially Lila's since unfiled reports and tests causes only me great grief when preparing for an appt. I will let Lila hang with Daddy while I do homework with Ava, if she doesn't want to well to bad, grab a seat here's some colors and paper have at it, sister needs help and she deserves the one on one attention. I can't and will not please everyone at the expense of my clentched teeth.

I will no longer be the only one to miss family and try to arrange and appease everyone's schedule . I do want my children to be close to our extended family but I am not going to break my neck and still be upset with the outcome due to others lack of holding to their word to attend. Not gonna do it. I will do things that make my family and myself happy and grateful. I cannot and will not try to change others. I will be the friend I need to be and my best is good enough.

I hope you all have a blessed and happy Thanksgiving. Keep it simple and enjoy! I know I am!

Mommy and ME at the Dewberry Farm

2008-11-06T09:59:00.000-08:00

Make video montages at www.OneTrueMedia.com

24 Hours Of LeMons

2008-10-24T13:21:00.000-07:00

Number 64 is the for us. My brother in law and his crew made it most of the 24 hours but the car began overheating. He had a great time and hopefully the track wasn't too trashed and will host it again.
The car crushed at the end was the recieptent of the "People's Curse Award" this is given to the caw crew that pissed off most racers by driving like a jack butt on the track. The car is crushed no "ifs ands or buts", man! racers are harsh! Here is the link and everything I saw was appropriate for viewing, but this guy has been known to post a few risque pictures at times. My brother in law is the one winking with the black cap. Go Uncle James!!
http://www.flickr.com/photos/hotrodguru/sets/72157608215987819/

Why?

2008-10-24T12:44:00.000-07:00

Why the heck do I want to eat everything in sight as well as what is hidden on the top shelf of the PANTRY!! Halloween is being seen as a curse right now....On a good note Lila has been just awesome on little two wheeled bike with training wheels. I have pictures and yes as soon as I get my hands out of the chip bag I will post. Ahhh.........

2008-10-23T08:13:00.000-07:00

Daily Motivator
The power of acceptance
Sometimes the best way to free yourself from a burden is to accept it. Much of the destructive essence of any burdensome situation comes from fighting against it. Once you stop fighting, you can start progressing. Certainly if there is a threat you protect yourself against it. But there is no point in fighting against what already is. When you accept the situation, that is the starting point at which you begin to make the most of it. When you can go beyond acceptance into sincere gratitude, you take on a powerful positive momentum. In short, accept what is, then find something positive about it. Even the most desperate situation has its positive aspects and possibilities. You'll uncover them only after you've accepted that the situation exists. Acceptance is not surrender. It is the recognition of reality. By clearly seeing what is, by acknowledging and even being grateful, you can move things forward toward the way you would like them to be.

I am realizing this, I can't change my daughter's diagnosis. I would if I could, she would be a loving and happy child even without WS, yes I would change it in a second. I know that is not how this life works, as the quote say above, I recognize the reality. This reality powers me to move forward and toward giving myself and my family the happiness and fullfillment set before us. No regrets.

2008-10-15T11:11:00.000-07:00

Testing to see if the email list is working.

My original "girls", all grown up now.

Spider Monkey

2008-10-14T13:16:00.000-07:00

We have a group of us old chicks that hang out. We take care of each other. We call ourselves the Crypts, cause whatever is told amoungst us, stays safe. Now we feel this is more appropriate. Hell ya! Bring it on!

Maybe we should be now called The Cryptic Spidermonkies? hhhmmmmmmmmm..........

a fireplace fairy

2008-10-10T13:41:00.000-07:00

I came across this photo and it is a funny attached to it.

Lila was 2 years old and we lived in our old house. Lets set the scene. Its december, the fireplace (which we had used the previous winter) had a raised hearth and a wire screen with a pulley in front. While I am at work I get a call from Daddy, "hey check your email asap".

The story goes, Daddy is "on duty" for the little fairy named Lila G., he goes upstairs to the loft to do some work. The loft overlooks the living room, and he is talking to the little fairy the whole time. On his way down, he starts talking to her again and doesn't hear her. No big deal she is probably here somewhere, "Lila, Lila, Lila?.......hhmm LILA? Panic begins to set into his leg muscles causing weakness in the knees. Daddy starts running through the house skreetching LLLIIIILLLLAAA!!!! Mind you it is a small house and he is now drenched in sweat. As he pants standing in the hallway and contemplates calling 911, he thinks to scan the room, there he spot her sitting behind the guard smiling. He finds our sweet little fairy covered in ashes in the fireplace. He about faints. Once he regains his facilties he figures he better clean her up, hence the photo (he had one of her in the fireplace but I couldn't find it here at work). Her nicknames change constantly depending on her adventures. She is our little fireplace fairy and we love her with all our hearts.

Job description - Why did I just now get this?

2008-10-06T08:54:00.000-07:00

PARENT Job DescriptionThis is hysterical. If it had been presented this way, I don't believe any of us would have done it!!!!
POSITION:Mom, Mommy, Mama, Ma Dad, Daddy, Pa, Papa
JOB DESCRIPTION:Long term, team players needed, for challenging permanent work in anoften chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities ! Travel expenses not reimbursed. Extensive courier duties also required.
RESPONSIBILITIES:The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, an embarrassment the next. Must handle assembly and product safety testing of a half million cheap, plastic toys, and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work througho ut the facility.
POSSIBILITY FOR ADVANCEMENT & PROMOTION: None. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you
PREVIOUS EXPERIENCE:None required unfortunately.On-the-job training offered on a continually exhausting basis.
WAGES AND COMPENSATION:Get this! You pay them! Offering frequent raises aand bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.
BENEFIT :While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock op tions are offered; this job supplies limitless opportunities for personal growth, unconditional love, and free hugs and kisses for life if you play your cards right.Forward this on to all the PARENTS you know, in appreciation for everything they do on a daily basis, letting them know they are appreciatedfor the fabulous job they do...or forward with loveto anyone thinking of applying for the job.
** AND A FOOTNOTE ? ** THERE IS NO RETIREMENT - EVER!!! ** If you are fortunate enough you will become grandparents!

Defeated and dismal

2008-10-03T13:17:00.000-07:00

I feel defeated. I replied to a post on another mom's WS blog and realized how defeated I feel. I look for Him, I really do, but this shadow of doubt and gloom overtakes my focus. This past weekend was a whirlwind with both the girl's birthday parties, new puppy, family in town and afterwards I found myself disconnected, anxious and depressed. Why? Why the hell not? I question myself for every little )$&@^thing I do or think. I doubt the decisions I make. Is it good for my family, for Ava for Lila for John. Screw me. I feel angry, annoyed, restricted, frustrated, sad, defensive and ON and ON. It is scary to think "Is this the rest of my life?" If it is I want to check out please. One one way ticket please, to where? I really don't give a crap or care. Tibet? Galapogos Islands? Sahara? it really dosen't matter. I am tired of running around like a chicken without a head, mind continually whirling (ok in the dislocated head) and going through the motions of a so called normal life. I feel alone. Alone in a sea of people. Good people, people that love me; family and friends. Does anyone really understand this? Most likely not and I wouldn't want to put anyone in this pit (ok maybe one person but that is a whole other story)

Guilt it comes on thick when I rant like this. Confusion and pain too they make a threesome. Denial? nope I don't have a problem with it, I don't deny that I think I suck at this so called parenting job. Would it be any better if I didn't have a disabled child? nah. I am confident I would still be in this hot cloudy bubble of self doubt. Some would scream "Girl get yourself to your therapist!" and I should but there is a lot of crap I should do. Wallowing .......I guess is what you do before you actually drown. HHmmm doesn't feel so bad once you get numb.

The great thing thing about this blogging is that it is alot like therapy without the bill. Of course many people will think "basketcase" or whatever, but I really don't care. Speaking of therapy many years before I even had children I purposly went to therapy because I didn't want to be battling with issues once I had children. Apparently that was a waste of good money, how ironic. Boy what a screwed up mess. Well if history repeats itself Ava and Lila will be in therapy and writing their rants for all to see and judge. Its makes me want to sob, and no one can change that. I know this. When I younger I always felt I was on the outside looking in, always seen as seperate and stoic. When in actuality I was a hard chocolate shell with a fast disolving and swirling center. Always two sides to me and I never completely firmed up. Who am I really? Guess I should have figured that out before I became a wife, then a mother huh. Tough shit Tes, now I have gotten myself in this life of encouraging children and guiding them to their true destination? Hell if you asked me right now, "what do you want to be when you finally grow up?", I still would tell you "I don't have a frickin clue!"

Aaahh this is going on way to long and getting all jumbled up. I am going to stop now. I've got a lot of looking for Him to do, I think I really need Him............ obviously.

All you have to do is look

2008-10-02T09:09:00.000-07:00

This is a picture taken by a co worker's sister. Sharon's in laws lost their summer home located on Crystal Beach due to Hurricane Ike. This was not a staged cross, it was just there among the debris. I choose to pray he wanted Sharon to see it and hold tight to her faith for her in laws and their families. The house they lost was a wonderful meeting place for the extended family and it will very hard to regain a place as special as this place was.

Look for Him he will always be there...........

Itsey Bitsey Rich

2008-10-01T18:44:00.000-07:00

Well as you can see our adoption went through. We are now the proud owners of Itsey Bitsey Rich. We have had a few accidents but nothing unexpected. I have one very happy 8 year old. We are blessed.

You will me mine

2008-09-26T08:44:00.000-07:00

We have applied to adopt this puppy, pray we are approved!

Lila " ah ate it", Mommy "WHAT?!!($&#$&$!

2008-09-26T07:34:00.000-07:00

Wednesday, Mommy and daddy, "Wow Lila your front top tooth is really loose it will come out soon"!, Lila "Ok". 1 hour passes..................Mommy "Hi Lila whatcha doin?" Lila pointing at a hole in her mouth where her upper tooth USED to be. Mommy "hey your tooth came out?" Lila " ah pull it", Mommy "oh, ok, where is it?" feeling a little tense. Lila all happy and sing song "ah ate it". Mommy holding onto the chair as not to fall out "WHAT!?" Scour the house looking, especially the red couch were she camps out. NOTHING. p.s friday we still haven't "found" it. Maybe it will show up before her birthday party tommorrow. What a great gift that would be:)

Lila Gabriella Rich 6 years old

2008-09-19T21:30:00.000-07:00

I simply cannot believe our youngest child is now 6 years old. It has certainly been some hard earlier years but I can say the past year has been like a book, reading one page at a time very slowly. Lila has grown by leaps and bounds, not just physically but emotionally and functionally. I do not like to speak about her only in terms of accomplishments but as a mother I love that she is maturing and blossoming. My husband, her daddy has always seemed to be so at ease with her diagnosis and development, I myself still have my times of sorrow and grief. I found myself almost at tears today and not really sure why, I can only assume it is a mixture of all the things that have happened. Tests for Lila, work, hurricane, John's job, Lila's birthday etc. etc. My positivity must come back, I must find it and grab it and hold tight.
I have so very much to be thankful for and one of the most important is Lila Gabriella Rich, our beautiful 6 year old daughter, one of God's most precious angels from Heaven.

Lila you are full of joy, but on mornings when you would rather keep you head buried deep in your soft pillows you are real rat:) You bring happiness to strangers and friends alike. You are a stubborn handful and a fighter for what you want, even if it really isn't yours. You bring us out of our shells to experience the goodness in other people and to realize the uncertainty of others. Pure love is what you are and we are grateful. We love you with all our hearts our most beautiful baby. Happy Birthday my love.

Checking in!

2008-09-08T08:11:00.000-07:00

Wow, it has been such a long time since I have posted to the bloggity world. So many things have happened, Lila started Kindergarten and life skills class (got pink eye on the 3rd day), great teachers and she enjoys riding her bus. I will be shadowing her this Wednesday to see what her schedule consists of on a daily basis. Ava went into 2nd grade with a great teacher (the week before school started had strep throat), trip to the doctor and medicated her to have her ready for Monday! No way she was missing the 1st day. I have so many pictures to post and can't find my camera cord to download my photos. Both girls will be celebrating their birthday's this month, Lila will be 6 on the 17th and Ava will be 8 on the 28th. I can't believe I have survived this long:)I am feeling a little antsy about Lila's I know she has some great kids she had contact with at her dayschool but not any "come over and play" friends, so I of course am fretting the whole thing. The one blessing is that our families will be with us and we are having everything on ONE day. I know, I know but it really is logistics. Our families don't live close so they all come for the celebrations and we knock it out back to back. Then we all collapse in a cake induced coma and enjoy the evening in the backyard, sipping concoctions and noshing of whatever we order in. My husband resigned his job but then was offered a better position to stay, now has to decide if it is really worth it all with this company. We are under the gun at work and all the while constantly on the look out for the darn hurricanes(Ike). I work for a hospital and our sister hospitals on the coast would need to evacuate to us. The money to prepare for this is outrageous not to mention the tension. On top of that I am down 1 engineer who injured his knee and 2 positions to fill. You would think with the unemployment we would have people scrambling for the job but guess the government pays better to stay home and scatch your &(!^#&E^. I have been keeping up with all the wonderful WS family blogs so I know I am not the only one out here with the everyday trial and tribulations, which I find wierdly comforting. To end on a good note I made goal on Weight Watchers! I feel so much better and if I hadn't been working out, the stress of this all would have surely sent me to a padded room. So to my bloggy friends don't write me off just yet and know that I pray and think of you all everyday.

The gut stabbing "look"

2008-08-06T08:51:00.000-07:00

Maybe I am a little thin skinned right now..... I am more then a little nervous about the upcoming school year for Lila and Ava, not really the educational part, that I can control, but is is more on the social part. This morning when I dropped them off at dayschool, I noticed one of the older girls (7/8yrs) looking at Lila with that "look", I guess only a parent of a special needs child would know it, its that look of almost disgust/condesending/irritation. While Lila could have cared less she be bopped her way to her age group, I overheard the girl asking Ava "why does you sister wear glasses, what is wrong with her?" and not is a concerned tone of voice if you know what I mean.I was not able to hear what Ava replied and I am almost scared to know. I would hope she would have said "her eyes need help you bubblehead, why else would someone wear glasses?" but Ava is not very self confident and this girl is very popular so others were hanging onto her every word and looking at my girl. I can imagine Ava feeling intimidated. I will ask Ava what she replied and I don't want her to be afraid of saying the wrong thing, but she will probably be on her guard if I ask or she will tell me "I don't know" her usual fall back answer. arrgg. We have spoken to her about WS and how it affects Lila, but I think this is the first time she has been outright asked by a peer. What is going to happen in the regular school setting? How do we further prepare her? What about Lila? She is 5 and while we have spoken about WS to her, I really do not think she comprehends this. Sometimes I think Lila will at some point comprehend and at other times I see her in her own little world. Will ignorance truely be bliss? There are so many sharp edges to this damn sword. I don't want Williams Syndrome, I hate it, but more then that, I hate that the world and the people in it are not perfect and that my girls, typical and not, are so flippen vulnerable.

Hi Ho, Hi Ho its off to TCH we go.......

2008-08-05T08:41:00.000-07:00

Well the audiology testing at Texas Children's went as well as it possibly could. The freeway gods decided to bless us with at least traffic that moved, not fast, but moving. What more could you ask for? Oh I don't know maybe a fast moving TECH? It seems no matter how many times to tell them "the longer you take to set your stuff in order, the more anxious she is going to get and YOU will not be able to get any accurate readings", hmmm. It takes months to get an appt and then they don't have their "equipment" ready, since i am a coordinator of a department, this type of stuff just chaps my butt. Now to wait for results.

Aaannnnyyywwwaaayy, John was elected to drive us and then we (well actually ME) railroaded him into going to the aquarium in downtown Houston, so much for saving money. Yea somehow that conversation we just had about saving money, has gone out the window. I have to see this as a opportunity to at least have some time together and enjoy our kiddos. Now if you saw this place you will know that this place is a cash sucking machine. The girls loved it and John and I have to admit after the sticker shock, we took the chance to just decompress and let ourselves get pulled in all different directions by excited little people, answered all the questions and read EVERY description of the magnificent animals encased in the exhibits. Of most amazing was the white tigers they have, yes at the aquarium, go figure (chi-ching.

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My one question would be why do people insist on making rides to unbelivable high? I have never pretended to be a thrill seeker and this outragously large ferris wheel on the side of a major FREEWAY is not my idea of a fun ride. As you can tell from my expression. Oh the things we do for our kids, let them see you a little scared, having fun and most of all enjoying them, yes I know we will.

Lippy!

2008-07-29T12:01:00.000-07:00

Miss Lila (WS5)has become quite lippy lately. Not sure if she is mimicking some crappy kid at dayschool or just her crappy attitude erupting. My husband laughs because when we tell her something to do, like "do not leave your trash on the floor throw it in the trashcan", she will say "nooo, don't want to", I tell her "it wasn't a yes or no question, do it" then she will go to do it AND grumble the whole way and not quietly! I have started following her to really hear what she is saying and suprise her when she turns around, sneaky me.
Of course she lays out the pouty lip and some croc tears and I always tell her "Who's the boss?" sometimes she gets me by saying "I AM!" ha. Gosh am I in for a learnin' with this kiddo.

Buster

2008-07-26T10:09:00.000-07:00

This is Buster he is a little man in a dog body. We have been blessed with dogsitting him for the past week. He was a little apprehensive at first but quickly warmed up. Ava has been a lovey with him and Lila has really enjoyed him following her around, of course he is looking for a few crumbs to come his way which she she gladly provides. I am really gonna miss him even though he snores like a small vacumn cleaner.

Where there is a will there is a WAY

2008-07-24T09:24:00.000-07:00

Where there is a WILL there is a WAY. A old statement but a very true one none the less. The problem at the moment is I have no idea where my WILL has gone. I hate that I have even given that validation. The lack of WILL. Just writing it projects it out to the universe, I cannot have that. Recently I feel that I have almost purposely sabotaged my recent personal triumphs. My weight loss, I was within 3.7 lbs of my goal, I failed to meet it last week, so what do I do? Lost focus, made not so good food choices and the ultimate betrayal, stopped my working out. I love vegatables but have I eaten them like I should? No, I can't even think of any meal ideas to get that rolling, and worse I actually like to cook. I want to cry and feel sorry for myself. I hate not being in a positive state of mind, it saps my energy. I have so very much to be grateful for and I should be, just having a hard time seeing it, all I see right now is all the things I "have to" do. School is starting, I want to do the portfolio packet for both Ava and Lila, I have another Ortho evaluation for Ava tomorrow for a 2nd opinion, the 1st one wants to extract 4 teeth, I sent an email to my swim community of opinions regarding the Life Skills class Lila will be in and the 2nd grade teachers available for Ava, on top of that we have a facility inspection coming up while my boss is gone on vacation, which leaves me the main target, oh joy. My husband and I are in the process of putting my parent's first home on the market (emotional), it is in another city and just takes far too much upkeep for little profit. Decisions. I feel toxic.

Cheap Labor

2008-07-22T18:43:00.000-07:00

Gotta love cheap labor. Since we have gotten the painting bug, we have been moving pretty fast. We have painted the entry way (shown), painted the formal living room, replaced 4 light fixtures and 1 more to go in the foyer. John also frosted the front glass door and the side panels. After 3 years our home is finally coming together. I hope to finish the kitchen and the tv room, then on to the upstairs! I have already done the girl's room and the work out room AND we got our ceiling fan, so I guess I really don't have any excuse not to use that room:)

Part 2 Texas Children's Hospital Endocrinology

2008-07-17T14:33:00.000-07:00

She looks pretty good considering she was up at the crack of dawn. She actually bee bopped into my bedroom at 6:30 am ready to watch one of her shows. I let her relax and have her breakfast while I got ready. All the snacks were packed last night because her snacks and my breakfast are veeeerry important, especially when we are 1 hour away from home and I don't like to eat super early in the morning. Left Daddy and Ava snoozing and out into the humidity we go, you know the humidity that keeps our skin soooo moist (gotta see the positive)and supple. Skated into the department just in time for our appointment, Lila greeted and I waited and waited, buzzer goes off and we begin the dance. The minute I walked in I spotted the offending party. She was on the phone and I knew that voice. Then the gaggle of them chatting and me trying to keep Lila calm, I let them know the more we wait the more she is upset is going to be. This is what happened next.

How anyone gets a accurate BP on these kids amazes me. Never happens for us.

Meet with Dr. Andrea Balazs, Assistant Professor of Pediatrics, Pediatric Endocrinology and Metabolism. Pretty cool lady. Explained that since her testing was only slightly elevated on the first test and well within normal on this past test, she was pretty comfortable with Lila's growth. She did want to take more blood to do the thyroid antibody testing and a thyroid ultrasound in order to get a baseline (no big hurry on that one) Lila shows no symptoms of a thyroid disorder so this will be our back up information if needed. We will visit once a year or if we see any symptoms, dry skin, thinning hair, excessive thirst, lethargic etc. Down to the lab for more blood, you think the vital taking was bad? Nothin compared to blood draw. Escaped from there, then to get our tanks filled with our snacks and mommy's venti cafe americano.

Once Lila was content with her snacks the "Hi, how are you" friendly rounds began, she took the camera and proceeded to take photos and me trying to wrangle her.

Back on the freeway to freedom! Made it back in time for her tutor and me to get back to the mayhem of work. Yippee. Now we wait for the antibody lab results and the scheduling of the ultrasound. Next Audiology, stay tuned................

Part 1 Texas Children's Hospital - Oh no you didn't!

2008-07-17T14:28:00.000-07:00

Tomorrow we traipse down to the medical center in Houston to Texas Children's hospital. I have just spent half the day tracking down the test results of blood work we did last week in preparation for this appointment, "oh go ahead and come for your appt we will use the existing results", WHAT? The hell I will. Sorry but I am a more then a little perturbed, first she tried to tell me "oh if you had the blood work done here I am sure we have it" No, can you get your butt up and check? "well we wouldn't have made the appt without the results" ok let me repeat, I made the appointment BEFORE I had the lab blood work done, that is why I am asking if you have them " well let me check then, but we usually have them" listen to a eternity of TCH blah, blah, blah. If I hold more then 5 minutes that is telling me you don't have the flippen results. Sugar sweet voice, "Oh, ok madam we don't seem to have them yet" , hhhmmm, I must be a genius. Of course I am not even going to have Mz. TimeKiller try and track the results down so I call my pediatrician and let her loose on them. Phone tag, phone tag, finally got the results. They are within the limits for TSH and T4. If I didn't have to wait so long to get an appointment down there AND the questions I want to ask, I would cancel right now. I have never had this type of response from someone there, I hope they have her tucked away in a windowless room when I am there at the crack of dawn. Sorry had to vent.

Piss and Vinegar

2008-07-11T14:34:00.000-07:00

Ok, the moon must be in a crappy phase because there is a lot of piss and vinegar spewing both at work and at home. I can understand I have to hold my acid tongue at work with some of the idiots that collect a paycheck here, but last night I felt I had to really rein myself in with my husband. I pretty much hold my own when he gets on his high horse but last night I could have really smacked that horse's rump and sent it off a cliff. How can a reasonable person become such an ass? Of course my two little kiddos come right along so I couldn't really set his butt straight like I wanted. Lila and Ava have a habit of being right in the middle of us when we have a "discussion", Ava hates when we raise our voices.
Of course he apologizes this afternoon and I just want to forget it, but another part of me wants to set the fire again and let his fingers get singed. He is a hard person to argue with because he is a round about fighter, that means he goes in all different directions and winds up arguing about something totally off of what the original argument was about, that just pisses me off. I do like to call that to his attention by using my two fingers like a peace sign and pointing to our eyes and telling him to "focus", sends him to the moon! he-he-he. I can be a sarcastic hellion and keep my cool while he huffs and puffs. I feel better already. Guess I will have a beer and some fajitas instead of rehashing last night, it will be just this girl and her grill. I hope he doesn't ruin my beer buzz cause then I will have to flick a piece of charcoal at him:)

A whole bunch of nothing

2008-07-07T14:30:00.000-07:00

Well not a whole lot of anything going on here on the Texas front. 4th of July I painted some interior walls even though it was humid as heck, but then a really hard rain came down, then the sun, ahhh Texas, best thing is our color is reeeaaallly nice, really warms up the entry way. I also painted a small guest room and even did the ceiling, looks good and hope I see some results on my arm muscles! (Of course the next morning I woke up really early and had to take something for my STIFF BODY).

Then I sprung the suprise on my husband that instead of watching the mega mall's fireworks from the mosiquito comfort of our own driveway, we were driving up to the OTHER outdoor mall to watch theirs. He grumbled something but I was way to ready to get out of the house and my girls were happy to go. So off we went with at least 500 of our close neighbors. We wound up really enjoying it, Lila got to meet and greet everyone within earshot and enjoyed the fireworks, I brought her earphones but she decided she really didn't need them. Ava sat on her daddy's lap and enjoyed her newly purchased "glow stick/neclace" and the cool evening air. I really liked the whizzlers, they make that wizzling sounds then pop and then look like long slender fingers with tiny twinkling lights, pretty. Saturday was much the same, rain and painting. Sunday we went to the Cheesecake Factory to celebrate my sister turning 50, I had never been to the resturant and was more then pleased. Of course my WW points were no where to be found and really I wasn't looking for them either:) After all the picture taking and rowdiness, we loaded up and headed home. We all decided to snuggle in the "big bed" and drifted off dreaming of carmel turtle cheesecake. Good times. yep. gotta love 'em.

The Secret

2008-06-24T12:48:00.001-07:00

So recently I have read the book called "The Secret", I have found it very interesting and enlightening. One thought stuck with me, gratitude. It is such a strong word and all that it implys but it is not nearly put in effect as much as it should. So here I go with what I am grateful for, no magical number, no forwarding to a number of people so I can get a suprise at the end of a week, no nothing, just grateful period.
I am grateful for my best friend, he is a rock and a soft shoulder to cry on. He reels me back when I have a wild hair and supports me on a tangent, he happens to be my husband and the father of my children and I am grateful for him.
I am grateful for my life as it is, there is nothing that I "need", I may want but there is nothing I need to sustain this life. I am blessed.
I am grateful for my easy pregancies, the memories of a fantastic feat of a human body and the precious children that came from them.
I am grateful for my job, I work with kind and considerate people and I am going to make sure I tell them Thank you.
I am grateful for my radiantly beautiful body, it may not be perfection but it is mine and I will keep it healthy for myself.
I am grateful for the confidence having a family has given me, I am no longer afraid or timid
I am grateful to wake everyday, able to see, walk, breath and hug.
I am grateful to experience unconditional love and to return it without hesitation.

www.thesecret.tv

Tucker

2008-06-23T11:35:00.000-07:00

Is this not the most angelic baby ever?!!? He is our newest gift from Heaven, he was delivered to my good friend Traycee and her husband Randy on Thursday 19 of June. She will be the most fantastic mommy and her friends here are already in line waiting to get the snuggly baby love. Baby time moves so fast, it maybe hard and a little prolonged for us WS parents but we have more to savor, gotta look at the positive!
A heartfelt WELCOME to Tucker!

A Sad Day..............

2008-06-18T14:44:00.001-07:00

Today is Wednesday and I have returned from giving up my Shady Girl, she was quite weak this morning so I knew I had to go through with it. Driving over to Kathy's I let her ride in her favorite spot, front passenger seat as my wing girl. We talked as I drove and wiggled my fingers through her thick fur neck fur, she gazed at me and I feel she was letting me know everything was going to be ok. Going in the staff was so sympatic, their was a man in the waiting area and poor thing he probably felt he needed to join in the hugging of the red eyed woman with the skrawny black pooch. The vet tech took us in and took Shady to get her stint put in so they would not have to pock around looking for a vein. When she returned I sat with her and we had a good talk, I made her promise to visit me in my dreams. Once we got her comfortable on the table it went very fast, first the sedative then the other. I buried my face in her thick neck fur for the last time and said goodbye. Kathy and I had a good cry and I know I left her in good hands. I haven't decided on the cremation yet, but I will get that done today. Tonight will be very hard, I hate the thought of her not being there when I get home. I miss her already. At least I have the picture that is posted to remind me I recieved the best love possible from my Shady Lady Girl.

Heavy Heart

2008-06-17T11:07:00.000-07:00

My heart is so heavy and filled with sadness, I have made the decision to give my belgian dog up to Heaven. She has lost a lot of weight due to her esophogus issue and with this Texas heat I can't keep enough fluid in her to keep her hydrated. I love her so much. It has truely amazed me how fast she touched my heart. Tonight I will spend my time with her and I know she will know how much she means to me. She has been my constant shadow since I recieved her and a loving tolerant companion. I wish she could stay and heal her body and snuggle with me but I know that cannot happen. I am already crying, this will be very hard for me but I know it is best.

Orthopedics

2008-06-09T12:53:00.000-07:00

Ok, the follow up to my rant below. Visited with Dr. Nelson Davino with Richmond Bone and Joint, I had heard he didn't have a good bedside, but I found him quite pleseant. He was familiar with my pediatrician when she interned at Texas Children's and he finds her on top of her game. He, himself, said he was suprised I was the one doing all of Lila's follow up without the aid of a WS Clinic, I told him if I had one close by I certainly would be involved with it. All in all the assessment went well, he was very pleased with her gait, posture , spine, tone etc. He did mention that we will see some of the issues such as tight muscles, possibly kypthosis (sp) later, and that is only since it is prevalent in WS, especially when puberty hits. He is comfortable with seeing her every 2 years, except of course if we see some changes. He said to save my money for future therapy if needed, he saw no reason right now to go for PT privately. I told him that I do Yoga and he said that would be excellent to keep her stretching, of course just not real intense poses. I am breathing very well now. Now on to endocrinology................yippee.

Freaking out (again, imagine that), Lila has her orthopedics appointment tomorrow (tuesday June 10th) and I was wondering if anyone has any suggestions on some items I need to touch on, besides the noted "Othopedic Issues, Musculoskeletal and neurologic assessments to evaluate joints, muscle tone, spasticity and hyperactive reflexes"? The orthopedist is pediatric and is used to working with genetic issues. I am going to go over, scoliolsis (not present at this time, but has only been checked through her pediatrician), toe walking and hopping while walking. What else, for Gods Sake???
Breathing shallow Tes

AAArrrrhhhh..................

2008-06-06T15:05:00.000-07:00

Oh my gosh I am going into serious mommy failure mode!
I just read a post from another WS mommy of all the therapies and services her WS child is recieving for the next school year, and I now I feel that Lila is seriously missing out on therapies/services.
Oh I can't stand it! I hate when I have the rug pulled out from under you feeling. I have got to remember to BREATHE.

Faces

2008-06-04T11:56:00.000-07:00

Recently Amina's mommy posted about her wondering how she is going to feel going to her first WS gathering. It brought back all the memories of our first one, it was a picnic in New Braufels Texas at a gorgeous park. I cried from Katy to New Braufels and wondered out loud if we should still go. My husband poor thing tried to be so supportive. He was gung ho to go and enjoy the day, I on the other hand fretted about, how many others were going to be as young as she was, what the older ones were going to look like, how was I going to react to those that were more severe, what to say to other parents, how many questions could I ask without offending. I was terrified for my little girl and worse my emotions. Looking back it was a great experience. Everyone was so inviting and they totally understood my questions and even the tears. My husband spoke with a women for over an hour and finally realized she was WS. He thought her daughter was the WS in their family, we were very happy for her and her ability to take care of her family. It made me realize that Lila will be a happy content person and we will give her all the support we can. I have posted a few early photos of Lila to show how she has changed so just like others, I love when people say she looks like my husband, WS is secondary to me. Lila is Lila, similar to others but truely One in a Million (Hannah Montana song), so appropriate.

Summer Fun, let the swim begin!

2008-06-03T11:20:00.000-07:00

The girls and their cousin love the water. Swim team season has also started, let the swimming begin! Lila was really brave this past Sunday, holding onto the side trying to get all the way to the deep end (where the big boys are), face fully in the water and jumping in from the side. She always amazes me.

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Graduation

2008-06-03T09:07:00.000-07:00

Here are a few pics of us celebrating my youngest niece's graduation, her and her older sisters were my first bunch of "babies". They have grown into wonderful, funny talented young women. My sister and her husband have done a fantastic job of teaching them the ways of life. I love them with all my heart. Kudos to you Krystina, Happy Graduation and much love. See you soon!

Overwhelmed and sad

2008-06-02T11:42:00.000-07:00

Today I am sad and overwhelmed. It has been a while in coming so I am not completley suprised. I am worried about my husband and his job situation, the nations gas problem has begun taking a toll on his workers (they work at night) and he has had to supplement with our home account. He is constantly looking for replacments and that itself causes him great stress. I worry about him and his health. We have reduced our children's summer program which causes me to worry, since they both love the program and I don't want them to be sitting in front of the idiot box all day, their daddy is so worn out that I don't see a whole lot he will feel like doing out in the hot Texas sun. I am trying to put together some "school work" packets that each kiddo can do with his help, so they do not backslide over the summer. I had already contacted a summer tutor and want to still have that in place. My oldest did not have a positive experience in 1st grade and I don't want her hating school. Between working outside of the home fulltime, swimming schedule(Ava), tutor schedule, dr appts and gym I want to cry. Maybe because all this extra stuff is new to me. I also tend to internalize things. I haven't been able to see my therapist cause I don't want to spend the money AND take time off of work OR spend the gas to get there:)I already regret taking the Memorial day long weekend off since that turned out to be total cluster. I hate working but I am the one with the health insurance which is a another concern, July starts our new plan year with all the deductables start over, more money out of pocket. Sigh. On top of that I went to my nieces graduation and saw some people I graduated with and their children are graduating and here I am with a 5 and 7 year old. I am ready to cry. I think I am doing things right and then it seems so ROYALY screwed up.

The Tail of a Belgian

2008-05-29T15:16:00.000-07:00

This is our tale of falling in love with a hairy black beastie. Her name is Shady Mae or Shady Lady or sweet dawg depending on what her mood is to respond to us. She was taken to a shelter by the adult children of her previous owner, the women had passed away and they did not want to keep her. Enter THE VET, known to us a Kathy S. she is a vet and a breeder of Belgian Sheepdogs and is on the list to call whenever shelters recieve one. She took her into her home and rehabed her, from what I hear she was pretty rough looking. A friend of mine went to Kathy's house and was introduced to this very loving dog and of course thought of me. I had been in the market for a dog but wasn't sure Daddy and Lila would be on board. Ava on the other hand jumped at the chance to possible have her own dog. I took a look on line about Belgians, they are great companions, loyal, gentle, just what I wanted for our home. After meeting Shady and Kathy in her home, she offered to bring Shady over for a "home visit", Kathy came and took a look around at our place, fenced yard, plenty of running room and indoor sleeping quarters (a must), we were approved for a week long trial run. I consider the week of July 4 her birthday, since that trial run became a long term assignment. Lila did not like the idea of a dog following her around hoovering up her crumbs, she prefers to eat them herself of course. She took a while to warm up to Shady still doesn't gravitate to her but doesn't tell her to "go away" like she used to. My husband became attached to her once he saw how much Ava and I sucummbed to her doggie wiles. We went happily along until she showed signs of labored breathing, it was and is one of the most scary things I have been through (and I have been in a speeding ambulance at midnight with a toddler). I called in to work and loaded her in the van for a over the speed limit trip to Kathy's office. Once xrays were done (even saw buckshot), we knew we were in trouble. Her larnyx had become paralyzed and is common in large breed dogs, this was slowly stopping her from getting enough air. I sat in the exam room and cried. How could I have let myself fall for this? Evidently I am a sucker for big brown eyes. I called my husband, my sister in law and my sister all asking the same question, should I put her down. John and I decided to go with the recommendation of taking her to the Gulf Coast Veterinary Hospital. At this point I know all of you are thinking, "are you mad, woman". When we arrived the next day, we were awed by the set up. This is a self contained building near downtown Houston and has the latest in technology to help our creatures, we saw all sorts of animals there, 3 legged dog, shaved cocker spaniel with cancer, rescued bunnies, squirrels, possoums, skunks, they even have a section for birds (didn't go in there). The staff was spectacular and the surgeon explained all that could be done. We went for the surgery, other then the breathing she was healthy. Of course after the surgery was done, another problem reared its ugly head. Megaesophogus, basically what goes in by mouth, without intervention by the esophogus contracting, would come right back up. With this comes pneumonia. At that time, I was ready to lose my mind, here I am nursing a big dog back to health, working full time, and helping raise two kiddos. This is what a stolen heart will get ya. So once you see the pictures, you will see what we have had to put in place, we call it the contraption. She does really well now and takes two pills morning and night. I have gotten really good at shoving them down her throat without gagging myself. I love this darn dog. Thank you to my best friends Liana and Martha (our go to dogsitter) and to Kathy for guiding her to us. My Shady Lady I love you my big beastie!!

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Our Cathy

2008-05-29T14:54:00.000-07:00

These are two of the pictures I love to look at over and over. It is of my husband's sister Cathy with our two girls. She is a good friend. I miss her now that her and her husband have moved away. Poor us.

Grown up? Really? I don't think so.......

2008-05-27T10:49:00.000-07:00

I am a little hesitant to post this but I have some conflicting feelings I need to sort out. This is basically my journal so some of this may be experianced by some and not others and I may ramble down various paths, forgive me. We had a family trip to one of my sister in laws homes, not in our city. During the course of the 4 day visit, I could "feel" tension, annoyance and some hostility directed to us. I alternated between angry, empathy, sympathy for this person(s). I know we all have our ways of being, but when a major effort is put forth by everyone to make a visit happen, I would hope any percieved slights could be pushed aside, especially for the greater good of the gathering. Since no communication was made to me as to what was "wrong" I tried to empathize because I do know that being around family can be stressful, but coping is a skill and it needs to be learned and practiced.It also makes me sad because I would hate that everytime this family gets together, that instead of leaving with good feelings it almost turns to the person(s) fleeing. I don't come from a large family and both my parents are gone no everything was not perfect, heck my sister and I are different as night and day, so I tried to be at least sympathetic but it is HARD since I don't know what the heck happened! I am angry because our oldest daughter is 7 and she was so excited to meet her cousin (went well) but then to have pressumably mature adults somehow make her feel she did something wrong or is not worthly of being spoken to in a respectful way. I have been around children all my life and I know they can be downright annoying but come on, they are children. Now that I am writing this I am not really sure I want my children exposed to this type of situation again, I do alot of explaining to Ava about people being different and sometimes those differences can not be very nice, but you move forward and not let it cloud your opinion of all people, now she is not seeing how she can be tolerant of others if grown adults don't. Does that make sense at all? In the end I want to move past this, I know life is too damn short to worry about all the toes I or my family could possibly tread on. I have kind and loving children, I will continue to have them seek out the good in people and if someone closes them off it will be that persons loss. I work hard to stay positive, I have a lot to worry about don't ya think? I have a lot to be pissed off about too if you think about it, do I bring it to the surface at the most inappropriate time? No. WHY? Because it takes too much energy and I don't have that to waste.

Texas Medicaid Information

2008-05-21T08:35:00.001-07:00

MEDICAID WAIVER PROGRAMS

The following is a list of Medicaid waiver programs that are available for children and/or adults with disabilities in Texas. These programs offer services in home and community-based settings rather than in an institution. These waivers do not look at the parents’ income and resources; instead, they base financial eligibility on the individual’s level of need, income, and resources, regardless of age. They all have a waiting list, so get your child’s name on all of the lists that you think may apply:

Community Living Assistance and Support Services (CLASS) 1-877-438-5658
Provides supports to people with disabilities of any age who have a disability other than mental retardation as their primary disability. For example, child with autism and mental retardation has a primary diagnosis of autism and is eligible for this program. For more info go to http://www.dads.state.tx.us/handbooks/ccad/5000/5120.htm

The Medically Dependent Children Program (MDCP) 1-877-438-5658
This program is available statewide on a first come, first serve basis. It is for medically involved children who are under age 21. For more info go to http://www.dads.state.tx.us/providers/MDCP/index.cfm

Home and Community-Based Services (HCS) 713-970-7799
The HCS program for persons with mental retardation provides individualized services to people living in their family's home or their own homes in the community. The person served may have other disabilities in addition to mental retardation. For more info go to
http://www.dads.state.tx.us/handbooks/ccad/5000/5140.htm

Community-Based Alternatives (CBA) 713-692-1635
This program provides home community-based services to person's age 21 and older that would qualify for nursing facility care. These services are provided as cost-effective alternatives to placement in nursing facilities. For more info go to
http://www.dads.state.tx.us/handbooks/ccad/5000/5110.htm

Deaf-Blind Multiple Disabilities Program 1-512-438-2622 or 1-877-438-5658 (voice and TDD) For people who are both deaf and blind, 18 years or older, and have a need for 24 hour support.

Your hut is on fire!

2008-05-06T07:34:00.001-07:00

When your hut is on fire

The only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming. Exhausted, he eventually managed to build a little hut out of driftwood to protect him from the elements, and to store his few possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out, 'God! How could you do this to me?' Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! 'How did you know I was here?' asked the weary man of his rescuers. 'We saw your smoke signal,' they replied.

The Moral of This Story:
It's easy to get discouraged when things are going bad, but we shouldn't lose heart, because God is at work in our lives, even in the midst of our pain and suffering. Remember that the next time your little hut seems to be burning to the ground. It just may be a smoke signal that summons the Grace of God.

P.S. You may want to consider passing this on, because you never know who feels as if their hut is on fire today

2008-04-24T15:24:00.000-07:00

Make an on-line slide show at www.OneTrueMedia.com

This is our Ava, our first little water pot. She is now 7 and still so precious. Today for example, Lila was having a bad morning, she is a lot like me, NOT a morning person, anyway Daddy's schedule changed so I had to rouse her way to early to her liking. Previously Ava would have made herself scarce due to Lila's LOUND crying but today, she tried to calm her and kissed her on her head. Lila loves our king size pillows and strips them of their pillowcases to get to the "pillow white", this of course sends me to the moon, ANYWAY, Ava made it a point of telling Lila, "Lila look I have your pillow white and we can take it in the car, don't cry I got it for you" and kissed her again and wiped her tears. I was so proud and wanted to cry. She has really grown emotionally this past year and has become so much more attentive to Lila. She is a true blessing. More photos to come! Introducing Miss Ava Izabella...........

Lila

2008-04-22T13:01:00.000-07:00

The video is a short clip of Lila. She will be graduating from Pre K in May. Her preschool is owned by a parent of a special needs child so she has had a very good experience with them. The ceremony will be at our church and this time they will have caps and gowns. We were asked to submit pictures of our graduate to be included in a class slide show. Of course we are purchasing the program, how could we not? Introducing Lila Rich...........

2008-04-22T11:39:00.001-07:00

Lila grad pictures 4/22/08

The Rich Family

2008-04-19T11:06:00.001-07:00

Not sure how the time line of a blog is supposed to go, so thought I should introduce the complete Rich family. John and I have been married for forever, ok not forever but a heck of a long time. We were "mature" when we started this adventure and swam along for 7 years before even inviting any little people to join in. Ava (7) is our first victim of parenthood, pretty good kid I must say, very calm and easy to please (thank goodness). She has also taught us quite a bit. With the arrival of Miss Lila (5WS) we were spun off into a whole other dimension. We tried to stay calm in the beginning of the WS minefield, but now we give ourselves permission to freak out. Thankfully we have not have to freak all that often since both children are pretty healthy. So in a nutshell, family of 4, one dog (Belgian Sheepdog, wait until you hear this story) and 3 fish, previously 4 fish but one evidently had the need to go to the open sea via toliet. If you have any blogging suggestions please send them, it took me forever to figure how to move my Adobe photos into a file to be uploaded. I really want to learn the tricks that Anna uses for the cool singing photoslide shows. Cool hats Anna, love them! All for now. Rock on.

The Rich Family

2008-04-19T11:01:00.000-07:00

2008-04-17T18:34:00.000-07:00

The beginning

2008-04-16T14:58:00.001-07:00

When did the flowering of the path begin? Well it would have to have been with the birth of Ava, so precious and pudgy with her jet black eyes and chubby wrists. A sight to see. We traveled a well worn path with our beautiful little water pot, then we met and fell in love with a water pot that was not so perfect and we call her Lila. Precious as her sister, pudgy to a point but all together different. I remember in the delivery suite looking at her and then looking at my husband, his face all lit up with love and soaking in every detail of his newest daughter, I felt perplexed. Why was she still covered in the white coating? Why were her eyes so puffy? Why do I feel scared. Nothing abnormal from the doctor....everyone saying how beautiful and healthy 7lbs and 11oz, I should feel ok, why don't I. Everything will feel "right" once she is brought back from being cleaned up and not looking like a piece of chewed up bubble gum. HHHmmmm. "We had to scrub her twice to get all the coating off", "were you at least 2 weeks early?" "we can't seem to quiet her in the nursery", "she is not latching on very well, have you breast fed before"? HHHmmmm.