About Our Son, Clark

Good Morning Friends. Yesterday I said I would post some photos of our son, Clark, and give you a bit of information on his life. Which is such a big part of our life!

Well, as you can see he graduated from High School. That is such a big deal for a child with a disability. I think one of the most difficult things about this event is that he growing up and for me that has been tough. Not from the boo hoo point but from the point of 'what is he going to do with the rest of his life?'

If you have never had anyone in your family with a disability this might be difficult to understand. But, in case you did not know, the school is responsible and mandated, federally, to provide opportunities for job and day program exploration. This means that they must go out into the community and see day programs and get evaluated for jobs. This was not done with Clark. Something for which we are very angry about.

We found out in February, at his last IEP, that there was no plans for potential jobs or day programs because of his health and other 'obstacles'. The obstacles were the medication schedule, his tube feedings (he was on continuous feedings) and hygiene issues. Well, you can't do anything about the hygiene part he wears a diaper because he cannot sit on a toilet. But, you can do something about the feeding and medication components.

I went to Clark's doctors and asked for help with solving the problems.....had that accomplished by the end of the next week. Came back to the school and demanded that they help us in the time he had remaining at school. They were able to get him to a job site, get evaluated and now he is on a waiting list. But, he still did not have anything else lined up for his days after school.

One of the things we had been working on for nearly 2 years was to find an appropriate home in the community for him to live in instead of the group home he was currently in. The agency we were working with lost their director at the end of February....suddenly....as in he quit. There was no explanation as to why, no contact with him either....no answers and left us feeling very uneasy.

Wayne and I gave it a lot of thought. What we came up with was this.....he has been living at this home for 3 years. Granted it is not the perfect home but, I don't think that exists and at least we know how these folks operate; we know what to expect. As Wayne says, "It is better going with the Devil you know instead of the Devil you don't." While Clark would be in the new home and that might be lovely, Clark would be starting all over again.....learning curve with the new staff, new staff he does not know, no plans for getting out into the community, etc., etc., etc. So, we decided to keep him at the home he is in currently.

We also decided to start talking to other people/agencies that might be able to help Clark get into the community instead of getting stuck in that home day in and day out. It was pretty dark for me for a few months.....I cried a lot. I worried a lot. But, then I got down on my knees and prayed for guidance and strength to make the best decisions for Clark. I feel that God must be guiding us else why would that door close on the school's help and the getting Clark into a home that we thought he needed. I think God has a different plan.

I think that God wants Clark to be the light at that group home. He is so happy always, despite all his issues. He is the most cognitive resident there. He is the most independent resident there as well. Maybe instead of fighting it, go with the flow.

So, here is the update in a nutshell......because I have babbled on long enough......we are re-decorating his room to fit his Construction tastes, we are exploring Day Programs (after having rewritten his Personal Care Plan to state that he needs to be out in the community), we are getting a Vocational Rehab. consult and we are on the waiting list for his job. Until we can find something out in the community, he will work on things at the home in their day program....like learning his phone number, complete address, to be responsible to tell others where he is going at all times on the facility grounds and doing little jobs as a stepping stone to the bigger one.

It has taken a lot of fighting for him.....yes, I am tired of it.....yes, I would love for everything to be in place and go smoother than it has for years. But, I have to keep thanking God for Clark being in my life, for keeping him so healthy and for giving me so much help to fight for him. Because I believe that I am not just fighting for Clark but for others in that facility too.

About all the pictures.....the cap and gown ones are from his Graduation. The girl in the pink is Brittany, his girlfriend at school. I imagine that since she still has two more years at school, the relationship will probably die due to lack of participation on her parents. Life goes on.

The other photos are of Grandparents and us at our recent zoo trip. A gift from his Grandparents (Wayne's folks). We had a great time...good diversion to the hum drum of Clark's daily life. Watched the Lions and baby elephants and sweat like pigs that day. But, it was very nice to all be together.

Thanks for listening to me. I do appreciate you so very much.
Cindy

Dad's Artwork

Good Morning Friends! I promised to show you the painting Dad did for me quite a few years back. He took this from a little print that I had hanging in my first house in my previous life (meaning, married before). I always loved the floral still life with the huge variety of flowers.

Dad, not being a flower painter, took each flower and created it on watercolor paper, then cut it out and applied it to the already painted vase and scarf. Then he applied a fine rice paper, crinkling it ever so slightly. This photo does not do it justice. The print itself is 25 x 19 and hangs in my living room; it is one of the first things you see when you walk into our house.

When he gave this to me about 3 years ago, he also gave me all the drawings of the flowers and leaves. My Dad was extremely talented, had great creativity and good eye for color and proportion. I like to think that is where I get my talent from......I was so blessed to have him as my father!

Thanks for looking and happy crafting!!

Cindy

Valentine's Day at the Zoo and Hope Cards

Good Morning Friends! Yes, it has been a week since I last chatted with you. I have been busy, of course, working on my studies (first exam tomorrow), working on taxes, taking care of Clark's issues, always (big care plan meeting on Friday) and working on cleaning up my desk. Which means the parts and pieces of stamped cards that I never finished.

Oh, you know you borrowed a set and stamped off a bunch of images but, just ran out of time or lost interest in that project. Well, that is me (raising my hand) on both accounts. I have so many projects that I want to do or have in the works that I forget that I have other responsibilities that have greater priority.

Like on Valentine's Day, Wayne and I really had nothing planned except to spend the day with each other. Well, then you really can't spend time working on your crafts can you. It was a fun day spent a good portion in the frosty cold watching some of the penguins get to waddle out of their cages for a bit. This was the first time we had seen this. So, it was fun! The rest of the zoo animals were pretty much non-existent except for the ones in the heated houses. We are zoo members and love going and walking around one of the last free zoos in the country.

Then we went to Whole Foods for some dinner fixins. Made a couple of nice grilled steaks with baked potatoes, huge tossed salad and ice cream for dessert. We were stuffed....kind of looked like those penguins! LOL! I was such a pleasant day to just relax and not think about the other things in our lives for just a bit.

Wayne and I have been very fortunate that we have not had anyone in our family or known any friends that have had breast cancer. Known folks, including Dad, with other cancers. But, which ever form it is a terrible disease to have to suffer under. My thought is that you have to give up your will to God but, still fight the disease. I had Ovarian Cancer so long ago I can't even tell you how I felt at the time.

I was just 18 when I found out. I was stunned and really did not know what it all meant at the time. That was in 1976. And at that time the treatments were okay but, not like today. So, I agreed to have a total hysterectomy to save my life. It was tough for quite a few years dealing with that removal.....the loss of hormones and the never being able to have children. I think it weighed heavy on Dad for a long time (he told me this later).

Today, I am healthy and have an adopted son. I am grateful for each and everyday I wake in the morning and put my two feet on the ground. I know that there is hope of a brighter tomorrow for all of us......whether we face that disease or another one.

Thanks for looking at my cards (these will go into my stash and some will get donated) and listening to my story. I appreciate your loyality to my blog even with my absences. I hope you have a great day!
Cindy

• Stamps - SU Hope Is
• Paper - SU Whisper White, Pretty in Pink CS, Basic Grey DP and SU DSP (retired), Creative Cafe Notecards
• Ink - SU Basic Gray, Pretty in Pink
• Accessories - SU Pretty in Pink Taffeta Ribbon, MS Lacy Scallop Punch, Buttons

Rosey True Friend

Good Morning Friends! I bet you thought I forgot about you? Well, rest assured, I did not. Summer always is so busy for us with Gardening, Traveling and Loafing! HA!

Anyway, I needed a card for my SIL who was just diagnosed Monday with AVM. Arteriovenous Malformation is a snarled tangle of arteries and veins that disrupts the process of blood flow. There is still much we do not know at this time; she still needs to see a specialist soon. This is the SIL that has 4 girls and one of them has special needs. We are all very worried but, are trying to think positive for her sake.

I have been trying to do my best to work on stashes of DP, I am nearly finished with this pack! You cannot tell by the picture (no sun today) that I had used glitter for the flower center....looks better IRL!

Thanks for looking and Happy Crafting!!
Cindy

• Stamps - SU True Friend, Curvy Verses
• Paper - SU Whisper White, Old Olive and Rose Red CS, SU Petals and Paisley DP
• Ink - SU Pretty in Pink and Rose Red
• Accessories - SU Key Tag Punch, Non-SU Glitter, Glue Pen, SU Rose Grosgrain Ribbon, Dimensionals, Pretty in Pink, Rose Red and Old Olive Markers

Make a Wish

Good Morning Friends! Yes, it has been awhile since I posted something but, it had been awhile since I made something. I think it's that thing that cardmakers talk about.....loosing your MoJo?

Don't how I lost it...maybe it's this sadness I have been feeling for so many things I cannot change in my life right now, maybe it is the lack of funds to buy something new to stamp with or maybe it is something entirely different, like gardening that takes so much time. At any rate, I needed to make some birthday cards last week and took a day to myself to make some.

I bought this set used from my Demo. I thought it would be pretty handy for some masculine cards or maybe even a christmas card. I perused the Big Birthday Candle set gallery and found 2 cards that I liked for the design just the way they were. The one to the left and the green and black near the bottom, both by HamiltonGal on SCS.

Designer Paper by 7Gypsies has always been one of my favorite lines. I bought this in a paper pack before last Christmas to work on a project, but realized that it would take too long for the time I had and be way over the amount I wanted to spend. So, I shelved the whole thing. But, when I was looking for some guy type paper I spotted it and thought...hmmm, this will be fine!

The 50th card I sent to my brother out in California. He and I were so close to each other for so many of our childhood years. Then when I went to high school, things between us changed. He got into some not so good relationships with "bad boys" and nothing I said made any difference. We spent many years not talking to each other...the last time I saw him was at our sisters wedding in 1993. He was starting a new relationship with a really good woman, Rose....I think she saw the good man that he really is. They are married now and happy.

Then when our Father passed away 2 months ago, we were thrown back together. We started talking again.....I told him life is too short to be mad any longer. So, we are trying to reconnect our relationship again. I am grateful that he has found peace in his heart and has forgiven himself for the wrongs he has done and is moving forward. As it should be.

The other cards are for future birthdays in the family....older niece, nephew and sister-in-law. They are not masterpieces but, I had fun making them and I hope the recipents will like them too. I really liked that I sponged the flame of the candle, that was fun!

Hope you have a great week! I appreciate you looking too!

7Gypsies card

Stamps - Big Birthday Candle, So Many Scallops

Paper - 7Gypsies Zanzibar DP, Sahara Sand and Basic Black CS

Ink - Ranger Archival Ink

Accessories - 1 3/4" circle punch

Make a Wish card

Stamps - Big Birthday Candle

Paper - Confetti White, Riding Hood Red, Baja Breeze and So Saffron CS, SU Sweet Slumber Speciality DSP

Ink - SU Riding Hood Red, Baja Breeze and More Mustard

Accessories - Paper Clip, Zig Marker and SU Riding Hood Red Taffeta Ribbon

Birthdays are the Best

Stamps - Big Birthday Candle and It's Your Birthday

Paper - SU Pumpkin Pie, Real Red, Whisper White and So Saffron CS, Washington Apple DSP

Ink- SU More Mustard, Ranger Archival Ink

Accessories - Paper Clip, Pumpkin Pie Grosgrain Ribbon, SU Small and Large Tag Punches

Amethyst Happy Birthday

Stamps - Big Birthday Candle and It's Your Birthday

Paper - SU Almost Amethyst, Whisper White and So Saffron CS, SU Tea Party DSP

Ink - Ranger Archival Ink, SU Almost Amethyst and More Mustard

Accessories - Wide Ric Rack, Cotton Thread50th Birthday card

Stamps - Big Birthday Candle, So Very, Wonderful Favorites, Short Order Numbers

Paper - SU Basic Black and Kiwi Kiss, SU Rockabilly Speciality DSP

Ink - Ranger Archival Ink

Accessories - SU On Board Lots of Letters Chipboard, Zig Marker, Crystal effects

So Very Loved - Always

It has been nearly a month and a half since my Dad passed away. I think I am doing pretty good dealing with his not being at home when I go to see Mom. I keep expecting to see him sitting in his chair when I open the door. Mom is having a very difficult time dealing with it, which is to be expected since he was her life's partner. She has most of her grief when no one is at home. She was worried that she was crying too much but, I think as long as she is crying, that is a good thing.

Anyway, I decided to make a couple of cards to send to Lisa, my younger sister, Chris, my younger brother and Mom. I wanted to let them know how much I love them and to apologize if I said anything in grief that has caused them pain. I feel I did, don't remember what it was but, I can feel there is distance. I am hoping to say some kind words to 'mend fences'.

The Orange and White is for Mom. I cased this from Leigh Ann Baird off of SCS. I change it a bit but really liked the flowers on the panel. Wished the 'loved' showed up better. I used my markers to color the small prismas because I did not have the color I wanted.

The Blue and Kraft is for my sister, Lisa....she loves these colors. I cased this from Putri on SCS, I really like her style of cardmaking.

This one is for Chris, he lives out in Mid-coast California. He was not able to come home to visit with Dad prior to his passing away. But, he came for a week staying with Lisa and my BIL, John. He helped Mom do some repairs around the house that Dad just was not able to do. I think they had a good time catching up.

Thanks for looking and I hope that you have a great holiday weekend!!

Cindy

The supplies are in no particular order this time....sorry.

• Stamps - SU Embrace Life and So Very; Hero Arts Printers Type Alpha
• Ink - SU Tempting Teal, Chocolate Chip and Pumpkin Pie
• Paper - SU Bali Breeze, Parisian Breeze Speciality and Washington Apple DSP, Whisper White, Confetti White, Tempting Teal, River Rock, Pumpkin Pie, Baja Breeze, Kraft, Blue Bayou and Textured Tempting Teal CS
• Accessories - SU Ribbons, Punches and Buttons (except for the brown one, it is from my collection of antiques), Unknown Blue ribbon, Making Memories Button Brads and Lil' Davis Chipboard

Leisurely Sunday with Mom

Yesterday my Mom and I went to the Chatillon-DeMenil Mansion in downtown St. Louis for their 19th Century Ladies Crafts Day. The original farmhouse that was on this spot was built in the 1840's by Henri Chatillon. It was sold to Dr. Nicolas DeMenil in the mid-1850's and was completed to look, as it does today, in 1863.

The Mansion was saved by an association who bought it from the State of Missouri Highway Commission who was going to tear it down to build Interstate 55. It is one of the only remaining examples of Greek Revival architecture in St. Louis.

We toured the home inside and was amazed at the beauty of the architecture and details. The ladies that were showing off and demonstrating crafts and that would have been done during the time period around 1850 included White Work (a particular embroidery), Crocheting, Spinning, Ribbon Work and Doll Making, Knitting (this gal was really talented, she was making socks), Hairwork and Cameo Carving, and Wet Plate Photography. There were also two ladies that were preparing to play period parlor music. It was nice to chat with all of them.

We left to have lunch at Bread Company....Pannera in other parts of the country. It was nice to have a day alone with Mom. She is doing her best to get life going again. All I can do it pray for her, offer to help her with various things and just be there when she needs to talk.

Hope you had a great weekend and hope your week goes smooth!

Happy Crafting!!

Cindy

A Sad Day

Friends I just want to take a moment to tell you that my Father passed away just after midnight this morning. He is relieved of his burdens here on earth and able to see God and loved ones who have gone before. I will not post until after his funeral on Monday; I will be with my Mother and rest of our family.

It will not be easy seeing Dad in that flag draped casket but, I know he is not there anymore. It is just his ragged old body....and Dad is free now! Hallelujia!!

Cindy

He Will Always Be A Great Man!

Folks this is me and my Dad last year at my 50th Birthday celebration. At this time he had been battling Lung Cancer for 2+ years. This was definately one of his better days. Two days ago we had Hospice started for him. I can't tell you what I am feeling.....angry, sad and feeling powerless to make things be different for Dad. If you have ever gone through this you know exactly what I am talking about.

This is the way I want to remember my Dad not the man I saw today....still able to be at his home. Angry, short-tempered and impatient. While my Dad had all those qualities while I was growing up they are magnified because of his disease and the shutting down of his body. Today was the day the equipment showed up....the hospital bed (probably the one he will die in), a bedside commode, oxygen tank and a wheelchair. Along with a bunch of medications for pain, anxiety and sleep. It was so much to take in, I knew I had to be strong to help Mom.

The Nurse today gave us all the information about which drugs to start having him take, she told us about how bad it will get before he passes....no sugar coating.....I guess that is what we need to hear. She also said based on his statistics, it may not be too long before he passes. I still like to think no matter what anyone says, I think God knows when and how he will go.....my faith tells me to rely on him.

So, I cry in private now....in the shower, in bed before I fall asleep, here at the computer telling you my story.....I can't seem to stop once I get started. This is Dad's choice not to fight the disease anymore. I don't blame him....he's my Dad and I love him. No matter what he did or didn't do, he will always be the greatest man I have ever known.

I love you Daddy...I will miss you but, will never forget you!!

Cindy

Thanks friends for letting me get this out in the open, cry on your shoulder....don't know what the next few weeks or months may be like for posting so I will hopefully post once in awhile to de-stress. I guess it is a good thing that I do not have a job right now, huh?

Orlando and St. Patrick's Day

So sorry that I haven't posted before now. Just seems like everyday since we have been back has been something going on. Two Birthday parties....one for Clark, who turned 20, and one for my Mom and brother, Louis. Both parties were fun, of course!

And we have been getting ready for tax time as well....I bet some of you feel the same way.....YUCK! The only good thing about it is getting money back...Yeah!! Too bad it is already spent...boo hiss!

This is a pic of Wayne's sister and her family, my brother, Louis and us getting ready to board the monorail at Magic Kingdom. It was a chilly day and it never seemed to get any better
either.....the wind picked up later in the day! But, it was still good to be away from stress and troubles at home!!

Here is Louis at Sea World, again, another chilly day. But, everyone had fun watching and feeding the dolphins! Wayne and I went on the Kraken ride....OMG that was nuts! I screamed the entire time. By the way, my brother is a special needs fella too. He has Williams Syndrome which involves similar facial characteristics. He was a hoot..everyone was his friend!

Wayne and I in Canada at Epcot. Not quite as cold there, thank goodness. We ate Mexican and English pub food. We have been there before and this time was a bit of a let down, nothing really
exciting going
on. We probably won't go back for a while now.

Okay, finally here are two cards I just finished for St. Patrick's Day. Neither are very exciting but, I wanted to show you that I was doing something for the holiday.

I wanted to buy a cute lepruchan stamp but, we just cannot spend for luxuries right now. So, I made due with what I had on hand. I have had the Irish Blessing for quite some time and never used it. So, I guess it was time!

I love the Irish people, their country and personalities Wayne and I were there in 2006 and have been wanting to go back again. But, the economy is preventing us from going just yet.

• Stamps - My Sentiments Exactly, SU Tag Time, Linen BG, Itty Bitty Backgrounds, Hero Arts
• Paper - 7Gypsies, SU Chocolate Chip, Always Artichoke, Khaki and Very Vanilla Cardstock
• Ink - SU Chocolate Chip, Close to Cocoa, Rust and Pumpkin Pie
• Accessories - MS Lacy Border Punch, Cricut Die Cut Tag, Cording, Dimensionals, Sponges

I hope that life is treating you fairly and that blessings come your way too! Happy Crafting!!

Cindy

More About Clark

After I re-read my post from yesterday I realized that I wanted to say more about Clark and his condition. For those of you who don't know Cerebral Palsy just keeps getting worse as one gets older. In addition, there is no cure for it.

One of the things that I constantly struggle with is "getting right" with CP and things I cannot change or fix. As a parent you want the best for your child, in all things, and when they grow up and move away, as in the natural order of life, you still worry. But you know that they are an adult now and can take care of themselves. That is not so with Clark, I will always worry about him! Is he warm enough, are his teeth clean, when is he going to have to have a G-tube replacement (I hope it doesn't happen while we are away), etc., etc. I think the best way I can help you understand is if you have every had a parent or grandparent in a nursing home.

You walk in to see them, maybe (depending on their condition and the nursing home staff's attentiveness) you smell urine or feces, maybe you see them in not enough clothes or too many, maybe they did not get their nails clipped or hair combed today. Your first instinct is to "fix" whatever is not right. It is like that for me....always. Part of me wants to turn that off but, part of me can't...because if I stop caring for him (even in the smallest way) who will?

It has been a constant struggle and fight for his nearly 20 years. But, I do not give up hope!

Now he is in a State run home, this was only to be a temporary placement...he has been there for a year and a half. We have been working with an agency to find him his own home. Just last week, we found out that this agency, while they haven't given up on finding something, has hit some road blocks. So, we have to start exploring another agency.....that was 5 months of nothing! Meanwhile, Clark is getting older....when he turns 21 school will be over for him and he should go into a day program out in the community. But, because he lives at a state run facility, they have to provide everything for him. They cannot because while he has physical needs that they can take care of, they can't meet his social needs very well. If he ends up staying there, we will have to find some $$$ somewhere to get him out into the community.....we will cross it when we, if we, get there.

As far as his physical body and travel.....he had a spinal fusion (rods and pins from T2 to the Sacrum) due to scoliosis about 3 years ago...saved his life! He also has had a Femoral Osteotomy about 2 years ago due to his legs windsweeping to the sides and causing one of the hip joints to come nearly out of the socket. Because of those surgeries, he cannot get in a comfortable position for a long period of time....his power wheelchair helps with tilt and recline features. And because of the power wheelchair we cannot get him into many homes....including Grandma and Grandpa's. Not to mention monitoring the meds, feeding, dressing and toileting....well, I think you get it.

So, Wayne and I make the best effort we can to provide him with the best life we can. Clark always has a smile and an "I love you, mama" for me and a fist bump for Dad no matter how he feels. He is a gift from God and we are grateful!

Mojo75 Challenge and Family Weekend

We had a very busy weekend after a very busy week. My husband's parents came in for the weekend from Wisconsin. They generally come a couple of times a year depending on what is going on at their farm. Right now they are waiting the arrival of baby goats. My In-Laws milk goats, show goats and sell goats....in addition to doing other things on their farm.

We had a short but nice visit and spent sometime with our son, Clark, too. They brought him an early birthday gift. It always makes him sad that
he cannot go visit them anymore....due to his physical condition.


On Sunday, after they left to return home, we went to my parent's for Dad's 76th birthday. Right now he is feeling a bit better....he has been struggling with lung cancer for over 2 years now....but, he is still so much thinner than he should be. I am so grateful that he is stil with us!! The doctors only gave him a few months a little over a year ago.

Wayne left in the early afternoon for Phoenix. He will be there for another week at least. So, I went downstairs to make this card. It took me much too long to make!! I found it on Dannie's Designs Blog and inspiration from Mojo Monday Blog. I hope you like it!
Delightful 5-Petal Flower Card

• Stamps - SU Just for You
• Paper - SU Cameo Coral, Mellow Moss, Whisper White and Simply Scrappin' Just Delightful Kit
• Inks - SU So Saffron, Basic Black, Cameo Coral, Mellow Moss, More Mustard
• Accessories - 5-Petal Flower Punch, Small Oval Punch, Boho Blossoms Punch, Fiskars Punch, Hole Punch, Brads, Dimensionals

I really appreciate you coming to see my stuff, it makes me feel good! Leave a comment if you wish.

Happy Crafting!!

Cindy