New Adult Down Syndrome Clinic

a message from Joyce: For the past 26 years, I have been a member of Kaiser Permanente. All three of our children were born under the Kaiser plan and all of our doctors are there. The only time we have ventured out of a Kaiser facility was for Sarah's open heart surgery and subsequent care. So just the thought of changing insurance carriers has caused me a bit of fear. But we must. Soon we will be on a Medical Mutual plan. It does open some doors. Like going outside of a Kaiser facility.

A few weeks ago I was mentioning to a friend that I just wish there was an adult Down syndrome clinic with some greater knowledge of the health issues related. Look what showed up in my email today...

...and how relieved I was when I saw that it is located at my beloved alma mater. I think Sarah will be thrilled to go to Ohio State for medical care. We have to wait until January to make the first appointment though. That's when the new insurance takes effect.


Just in case you are wondering about the eye. Today it looks fine. No redness. No puffiness. I am starting to keep a closer watch for allergy patterns, like food, shampoo, etc. Maybe I can get some clues before we head to a germ infested waiting room:)

Eye have a Problem

Look at my right eye.

No, I did not get punched.

This has been happening for about two months now. Most days it is fine. Then on some days, like today, it looks like this.

It does not hurt. There is nothing wrong with my eyeball. No discharge or crusty stuff like pink eye. Any idea what it could be?

.

My mom just told me I am going to have to go to the doctor. I do not want to go to the doctor. "I am fine," I told her. But she thinks it needs to be checked out. I am not happy about this.

Sibling Sunday ~ The final days

My playset. The final days. The wood was starting to rot, so my Dad said we needed to paint it. We decided it would be fun to make it scarlet and gray.

The little swings were all rusty so we replaced them with a double seat swing. The tire was old and it was cracking, so my mom was afraid for us to use it. Northeast Ohio winters are hard on playsets she said.

TJ's feet grew so big he could hardly climb up the little steps. But he made it one last time.

We took one more picture in 2005. For the fourth of July. We decided to bring our Build-a-Bears out with us too. That's my Great Grandfather's flag behind us. We used tools from his hardware store to build it in 1990, so it was only fitting our last picture included his flag. And that was about the last time we used the playset.

Prayer Warriors Needed

Please go over to my friend Kristen's blog. I am so sad that she will be in the hospital for so long. Again. Kristen is a fighter, but she needs our prayers.

We are thinking of you Kristen.

Everywhere I Go...

...I am running into my parents...

On Tuesday as I was leaving the place we vote with my mom, my dad walked in.

Then today I was on my way to the nursing home I am working at and the bus was stopped at a red light. When I looked down into the car next to us...it was my mom...on her way to the post office. They are everywhere and that makes me smile.

And the Winner is...

...and you thought I was an Indians fan...

Haaa...I am a Cleveland Indians fan...the truth...TJ brought the shirts home for us the summer he studied at Julliard:) It's always nice to applaud the winners though. Congratulations NY Yankees!!

An easier Transition to Job placement...

a message from Joyce: I promised I would tell you today a little about what has been distracting my time from blogging lately.

The short story is, we have a new employee. Her name is Sari. She started on Monday. We (John, Matt and me) have been frantically cleaning a section of the office to make it just right for her arrival. Her area is over in the corner behind the counter.

So, what's the big deal, you ask? Truthfully, this is huge. Last spring I wrote about the day Sarah and I visited the Adult Activities Center where the County Board of Developmental Disabilities would likely place her when she ages out of the job training program she is currently in. As in most states, that will happen when she is 22. However, there is a waiting list for services, so there is no guarantee of that happening for several years. The greater issue for me was the general idea of sending Sarah to a large facility with 200 plus other adults with disabilities to "hang out" all day. Not my vision of where she would be after all these years of hard work. I soon found out though there are not a whole lot of alternatives due to funding shortages they claim.

A separate concern for me was the transition process. If you live on the eastern side of Cuyahoga county and have a high school student with a disability, they are often in a program referred to as CEVEC. It is an excellent operation. The entire concept is they train the teens in the community in real job sites. But then on their 22nd birthday, or there about as some districts will let them finish the year, they transfer over to the County Board of DD and a whole new set of adults and placements take over. Huge disruption to a young adult in my opinion. Especially for those who transition is already a difficult issue.

So last spring, I started dialogue with staff members from both entities. Some were cooperative, some were not. My concept was this: Find a company placement in the final six months of CEVEC that would then hire them as an employee once they reached their 22nd birthday and aged out. Behind the scenes the adults can handle the paper work involved in transitioning from one bureaucratic entity to the other. For the young adult involved, it would be a seamless transition. In fact, they would not even realize a transition is occurring.

Going into this I knew I had an advantage in these discussions, as my husband and I own a business. Not only do I see the challenges from a parental view point, I can pilot the thought process with jobs. So after many meetings, drum roll please, our first new employee from CEVEC arrived this week. She is a delightful young woman with Autism. During the interview process we learned she has some distraction issues and does not like to work in a large environment.

Hence, the corner area. It has a feel of privacy so she will hopefully be more comfortable. Yet it is in the snack/lunch area so she will have to interact and socialize with the employees for short periods. This is important to her family. She comes to us initially with a job coach who will stay with her until she learns her duties. She will start out with shredding. We are a medical billing company so we have an endless mountain of paperwork that must be destroyed appropriately. The concept is when Sari turns 22 in January, she will become a member of our staff and I will be her immediate supervisor. Behind the scenes, the County Board of DD could be called in for consult if needed.

It's a start. A small beginning that I hope will make a difference. For Sari, and one day for our Sarah. I'm pleased with the initial phase. Sari is so excited and her family is thrilled.

Courage to tough out the tough Times

Message from Joyce: Shortly after I published yesterday's post, I started to think about how I was going to get my message across today. See the purpose of my post was not to sling mud, again, but rather to start with an illustration that there will always be crude floating around. It's what you do with it, that makes all the difference.

I have been so fortunate over the years to have had some really awesome jobs in great organizations. Each one has taught me a good lesson or two. When I was with the American Heart Association I was given the opportunity to attend a training with a gentleman named Alan Zimmerman. He is a motivational speaker who I found to have an edge that I enjoyed. This morning when I opened my email, Dr. Zimmerman's Tuesday Tip was waiting for me. Just by the heading I knew it would be a good one. And it is. I also found it has just the message that I want to convey. The reason that I am going to be able to tell you about our newest adventures.


"The Tuesday Tip"
November 3, 2009
Publisher: Dr. Alan Zimmerman
Contact: Alan@DrZimmerman.com
Telephone: (800) 621-7881
Web site: www.DrZimmerman.com

"To map out a course of action and follow it to an end requires ... courage." Ralph Waldo Emerson, 19th century essayist.

What Dr. Zimmerman Has To Say About This: All of us have heard about the Great Depression of the 1930's. In fact, we might have grown up hearing our parents or grandparents talk about it ... about how tough it was and how it changed their lives forever. Now I hear people talk about the Great Recession of 2008, 2009, and maybe beyond. And who knows if they're right or not. Economists, futurists, and fortune tellers seem to have about the same rate of accuracy when it comes to predicting the future. But this I do know. Times are tough for a lot of people, and tough times require COURAGE. And those who learn COURAGE and exhibit COURAGE always come through the tough times in the best shape. So how do you get COURAGE?

1. Practice persistence. Keep on keeping on ... even if you don't feel like it. So what if you fall down? So what if you make a mistake? So what if you lose a customer, a business, a home, a relationship, or anything else that is vitally important to you? It's terrible, of course, but it's not the end of the world ... if you practice persistent courage. As essayist Herbert Kaufman noted, "Failure is only postponed success as long as courage 'coaches' ambition. The habit of persistence is the habit of victory."In other words, if you will simply hang in there, be patient, persistent, and courageous, more often than not you'll make it through the tough times in pretty good shape.

Michael Staver, an executive coach, puts it this way. He says COURAGE is an acronym for:
Continuing
Onward
Under
Rigorous
And
Grinding
Experiences.

Personally, I can testify to the effectiveness of Staver's COURAGE acronym. It's gotten me through physical, financial, occupational, and relational crises more often than I care to count. And then, in your efforts to build more courage ...

2. Make a conscious decision to pick yourself up ... each and every day. That's what I saw some of the inmates do when I worked as a counselor at a reform school, Boysville of Michigan. Those who learned to pick themselves up ... instead of blaming other people such as their parents, teachers, or friends ... and those who learned to stop blaming other institutions such as their schools, the system, or the government ... came out all right. And that's exactly what Reginald Berry learned to do ... even though it took him a long, long time. He spent several years behind bars, many of them in solitary confinement, in a room with only a sliver of natural light. His meals were pushed through a slot in the steel door, and showers were permitted once a week.Today, however, Berry is an upstanding member of the community. He works for two social service organizations, leads discussion groups of young homeless men, and negotiates peace treaties between gangs. He has his own nonprofit organization, SOS (Saving Our Sons), for which he makes presentations in schools debunking the romanticized myths surrounding street life, gangs, violence and prison.You see ... many people would have folded under the pressure. After all, Berry had more than his fair share of tough times. But Berry didn't fold. After his first night in solitary confinement, he began sleeping on the floor rather than the bed. As he says, it was a literal reminder for me, "Every day I got to pick myself up off the floor."I'm not saying you have to sleep on the floor of your bedroom, but I am saying you have to quit feeling sorry for yourself. You've got to stop whining about how bad your circumstances are, and you've got to start picking yourself up off the floor of your own little pity party. And you may have to do that every day. But that's why it's called courage. And finally, you've got to ...

3. Know when to let go of your troubles. Mind you, I said "let go" of your troubles. I didn't say deny, discount or dismiss your troubles. In other words, it takes courage AND persistence to hang in there ... to keep on working your way through your troubles. But it also takes courage AND wisdom to know when to let go of your troubles. The story of "The Small Tree" makes that point. As Mr. P. says, he hired a plumber but got a lot more than some fixed plumbing in return. As Mr. P. says, on the first day of work, the plumber was an hour late due to a flat tire. Then the plumber's drill stopped working, and his truck wouldn't start. So Mr. P. drove the plumber home, who sat in stony silence the entire way. When they arrived at the plumber's house, the plumber invited Mr. P. to meet his family. But as they walked toward the front door, the plumber paused briefly at a small tree, touching the tips of the branches with both hands.When he opened the door, the plumber underwent an amazing transformation. His tanned face was wreathed in smiles, and he hugged his two small children and gave his wife a kiss. Afterward, he walked Mr. P. to the car. They passed the tree, and Mr. P's curiosity got the better of him, so he asked the plumber about what he had seen him do earlier with the tree."Oh, that's my trouble tree," he replied. "I know I can't help having troubles on the job, but one thing's for sure: those troubles don't belong in the house with my wife and the children. So I just hang them up on the tree every night when I come home and ask the Almighty to take care of them. Then in the morning I pick them up again.""Funny thing is," he smiled, "when I come out in the morning to pick 'em up, there aren't nearly as many as I remember hanging up the night before. "He's right. As Kenny Rogers used to sing, "You've got to know when to hold them, and you've got to know when to fold them." Like the plumber, you've got to have the courage to face your troubles, and you've got to have the wisdom to let go of your troubles. You've got to know there's always a right time and right place and right way to disengage from your troubles ... at least for the time being.

Action:Figure out one way you can disengage from your troubles ... at least temporarily ... so you can keep on keeping on when the times are tough.

Here is a little sneak peak...

...of what I will be sharing with you tomorrow. I'm so excited I feel like a little kid in a candy shop:)

Special Needs Children Require Special Parents

A message from Joyce: Several weeks ago, August 21st to be exact, I wrote about a relative that was unhappy with a blogpost I had written and she called to let me know. That day, I felt many emotions. Mostly anger. But as time went on my anger turned to hurt. What the caller was really telling me is my feelings aren't important. What I was revealing in the original post was how I felt on a certain day. Shortly after Sarah's birth. I was trying to help my readers understand that those first few days, even weeks and months are hard. Very hard. And a whirl of emotions is involved. Yet, life has a way of working out. And twenty years later, life can be beautiful if you let it.

A week or so ago my husband had another conversation with her and again she questioned why I needed to write about what I did. Why did I even need to write about twenty years ago, she wanted to know? The short answer is because I felt like it. Not to mention this is my blog, my and Sarah's blog and we can write about anything we want to. But I don't usually take the short route. My mojo is to take the longer road. To delve into the situation and look for the good that can come out of it. What was the real issue here?

Then last Thursday when I sat down to read the newspaper, this was the headline to the Dear Abby column, " SPECIAL NEEDS CHILDREN REQUIRE SPECIAL PARENTS" Although I might not totally agree with the wording of the heading, the letters that day were directed at an Aunt who had written to Abby complaining about her sister who has a child with Autism and not liking her lack of help in a project the Aunt thought she should be involved in. I remember reading that. It wasn't too much before my dreaded phone call. I'm sure the writer thought that Abby was going to agree with her and say, "Yea, your right. Instead she told the Aunt that she needed to cut her sister some slack as parenting a child with special needs is not easy. "

As I read through these letters I really started to think about this relative. I realized that I could not recall one single time that she ever came to the hospital to see Sarah. In all fairness to her, she lived in another part of Ohio. But still. Sarah spent the better part of her first ten years of life in the hospital. One year alone over 100 days. Am I looking for sympathy? Pity even. Goodness no. Just a request for a glimpse, possibly an understanding that life has not been easy for us. Why be so critical and judgemental? The common thread in the following letters: try walking a mile in our shoes. I would settle for just reading the letters.

DEAR ABBY: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fundraising with her and the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack. Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center around our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc. The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do. -- SPECIAL-NEEDS MOM IN ALABAMA

DEAR ABBY: I am the mother of two boys with special needs who are around his age, and I can assure you, that woman is already "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need. Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box). The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry, and a long, comforting hug. -- CINDY IN AUSTIN, TEXAS

DEAR ABBY: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly you're sobbing again. Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, many of these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit. There is also the problem of not being able to get needed services. In many states, once children are out of the school system and on the waiting list for adult services, they sit and languish at home with NO services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you must relocate, you go to the bottom of that state's waiting list. Living with that, we often can't get or hold jobs. Day care is a huge problem for us and our kids. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research. -- SONJA IN COLORADO

Dear Abby is written by Abigail Van Buren, also known as Jeanne Phillips, and was founded by her mother, Pauline Phillips. Write Dear Abby at www.DearAbby.com or P.O. Box 69440, Los Angeles, CA 90069.

Sibling Sunday ~ Snow

Wow!! I just saw on the news that Colorado got lots of snow this weekend. So I decided to post more pictures of my playset to show you that we didn't just play on it in the summer.

Sometimes we went out in the snow.

Matt loved climbing on that thing. My mom usually took the tent part off in the winter because the heavy snow on top would rip it.

I wonder if we will get a lot of snow this winter? One thing is for sure. We won't be climbing on the playset now that it is gone.

Halloween 2009

I'm ready for the kids to come. I have my Happy Halloween shirt on. I am not wearing a costume this year.

We decided to make treat bags this year just like we make for Meals on Wheels.

This year we used little candy ghosts and pumpkins from Malley's Chocolates.

MY mom decided at the last minute to be a Cheetah Girl. She put this costume together in like two minutes...

...haaaaa. It's her new Snuggie from Grandma. She put a belt around it to hold it up. Just don't turn around mom:)

Matt got out one of his favorite scary masks. He and his friends were going to hide in the bushes and scare kids when they walked by. My mom told him, "No little kids." My dad said he was going to dress up as a "tired old man." Funny. Happy Halloween everybody.

Let the Stitching Begin...

...if you have been following us since last October, you may remember this retro photo. It was Matthew's first Halloween. He was just three days old. I was not sure exactly how much he would weigh or how long he would be, so I had the overalls basted together and neatly spread on the sewing counter waiting for the finishing touches to be completed once we arrived home after birth.

For several years, I had a little sewing business going on the side. I created custom wedding attire, baptismal and first communion dresses and gowns for black tie events. Those outfits help pay the bills. My favorite project though, was the line of clothing I designed for medically fragile children.

It started with Sarah of course. Our initial hospital stay for her open heart surgery was projected to last seven to ten days. It turned into two months. During that time, I created a few outfits for her to wear that would accommodate all the various lines and tubes that she was attached too. She looked adorable and the nurses loved them. Then a few months later she was sporting a permanent trach. And that's when Jely Splats was formed. While the kids slept, I stitched. When I got pregnant with Matt I was concerned about not being able to complete dresses so I turned new brides away and slowly eased off the gowns and the fun clothes.

Then last year Sarah and I started blogging. We were meeting new families at rapid pace and we started to receive questions from families who had children with trachs. The day I read the email from a mom expressing her husband's disappointment that their four year old son looked like a baby because he was always wearing a bib, I cried. Most people would not understand the big deal that was. I not only understood, I felt the pain deep within my heart. I knew at that moment Jely Splats was about to get a second life.

But today things are different. Sarah is not a little girl anymore. Neither are her friends. I have been in enough meetings over the past few months to know that jobs are tough to come by, especially for young adults who need some extra encouragement, some extra guidance. I started to wonder if they could sew? Would Sarah want to create garments for kids? Would her classmates?

Then a month or so ago I went to Sarah's job training site to pick her up early to get to a football game. Somehow I got to talking with her teacher about sewing. I just could not belive it when she told me she used to work at Bobbie Brooks. As a seamstress. She knows the industry. She also understands young adults with various disabilities. And she loves to go into New York City and shop for fabric in the garment district. The more we talked the more excited we both got. As I walked to the car that day I definitely felt this was another one of those By Chance or By Design encounters.

So for the last few weeks I have been frantically cleaning and organizing the studio. The machines have all had a tune up and we are ready to let the stitching begin...

Stay tuned for more exciting details...

Update on Permanent Damage

We have had so many requests for a copy to print of the newspaper article we posted earlier today. I've typed it below or send us an email to sarahely8989@yahoo.com and I will email you a clean copy in Word.

Find ways to calm down before causing permanent damage
By: Doug Worgul
Knight Ridder Newspapers

You can nurture a relationship for years and ruin it in a moment if you can’t control your temper.

Here are some tried and true tactics for keeping cool when tempers get hot:
-Hold your tongue. When you’re angry, anything you say can and will be used against you. It’s better to just say nothing.
-Ask for more information. Many arguments are a result of poor communication. Clarification is better than confrontation.
-Avoid using inflammatory language. If you must speak, don’t curse, don’t insult, don’t question motives or intelligence, and don’t bring up past offenses.
-Take the high road. Admit you were wrong. Promise to try harder. Say you’re sorry.
-Get a second opinion. Talk to someone else about the argument to get a more objective perspective.
-Take a deep breath and smile. This will help you stay in control and drain away ill will.
-Consider what’s at stake. Maybe it’s your marriage, or your job, or your relationship with a child, sibling or friend. Ask yourself whether the expression of your temporary feelings of anger are worth the risk of permanently damaging a relationship you value.
-Work it out. Go for a walk or bike ride; play a game of racquetball; lift weights. Use exercise to exorcise bad feelings.
-Get a good night’s sleep.

Find Ways to calm down before causing Permanent Damage

a message from Joyce: It is Thursday and the sun is shining in Cleveland:) which means I will be in the garage all day. Sarah mentioned last week that I have been so busy getting ready for some new adventures, which I will share very soon. In preparation, I have been spending a lot of time cleaning, organizing and filing. Much of what I have found is going straight into the recycle bin.

But every now and then I come across something that makes me pause for thought. This article is one such item. I have been reading in blogland alot lately about relationships falling to pieces. Families torn a part. And often because of something related to our children with Down syndrome. It truly breaks by heart when I hear this. The following article provides some EXCELLENT advice for all of us. I know why I saved it. It is a good one to forward on to others.

If you click on the picture you should be able to read it. It is worth your time.

Brownies for the Birthday Boy

Matt has been in his room all night playing with his new game. I decided we need to have a little celebration for him. So I arranged for everyone to meet in the kitchen in 10 minutes.

We made brownies and found some balloon decorations and three candles. Now it is time to sing...

Happy 13th Birthday Matthew

13 years ago today I went to visit my new baby brother in the hospital.

I got to feed him a bottle. I was excited to be a big sister.

I am so happy Matt joined our family. He is a great brother. Happy Birthday Matt!!

A Purple Passion Preview...just for Max

a message from Joyce: I have a new best friend. He does not know it yet, but we share something pretty unique. Ironically, I had a post ready to go to introduce you to his mom, Ellen. I love her perspective on so many things. Her blog is one of the handful that I check everyday that has nothing to do with Down syndrome. Her son had a stroke at birth. She frequently shares her thoughts as a mom. She talks about her disappointments and fears. Her altered plans. She shares her son's journey including his recent stem cell infusion. And her darling daughter's take on all of life.

Then... just a few days ago...she let it slip that Max is passionate about purple. That I can definitely relate too. The funniest thing is, today she wrote about being in Bed Bath and Beyond and seeing the huge purple bags they have with the bridal registry. I too was just in the same store, staring at the same purple bag and wondering what I could do with it for Halloween. I guarantee Max will be much cuter than I would be wearing the bag. She asked for suggestions as to what to do with it. I have a few:


How about a purple Crazy Bones? No specific form necessary.

or maybe something like this little guy that sits on my desk?

Ellen is a beautifully skilled and inspiring writer. I was thrilled when her blog...To the Max...was recently chosen as the best "Special Needs" blog and is now a finalist in the over all category of best mommy blog. There is still time to vote for her to be a winner. Click HERE to read about it.

What is THIS Grandma?

My Grandma brought me a present. It is pink. Bright pink.

I opened it and put it on. It is sorta like a blanket. But it has sleeves?

It has matching slippers too.

My mom is being silly. She said I could wear it for Halloween and people will think I am walking Pepto-Bismol. Then she said it is like a hospital gown because I am flashing everybody from behind. No Mom. Grandma said it is for when I am in bed or in my chair watching TV.

Oh now I get it. It's a blanket but my hands are free to use the remote.

I love this Snuggie. Thanks Grandma. Good idea. Oh guess what? Matt got one too. Check it out by clicking here.

Sibling Sunday ~ Celebrating a Birthday

This week my little brother is going to be thirteen years old.

So my Grandma & Grandpa came up to Cleveland today and we went to Olive Garden for dinner.

I had chicken fingers. I can never eat them all so I got a box to take them home. I wanted to write my name. This crayon did not work so good.

So Grandpa let me borrow his pen. It worked great.

See, it reads Sarah. That way it won't get confused with my mom's tortellini.

I can't believe my little brother is going to be a teenager. Want to see some pictures of his big cookie? Just click here.

My High School will be on MTV Tonight

Sorry I have not posted for a few days. I am fine. My mom has been so busy working on some exciting new developments that she will share with you soon.

I want to tell you about something I am excited for. The cheerleaders from my high school are going to be on MTV tonight at 8:00.

Me in 2007 wearing my Brush High School hoodie.

It is the show called "MADE." One of the cheerleaders has a brother with Down syndrome, so I have been hearing all about the taping when the camera crews have been in town. They even went to her house to tape. How cool is that. I am a little worried though. The preview has them fighting and crying. But the producer told my mom's friend in the end it all works out. I hope so. I can't wait to watch it.

Introducing Blogzilly

a message from Joyce: Sarah and I have been blogging for over a year now. It has been an extraordinary experience in so many ways. I believe I have mentioned before that we never encountered another family in the Cleveland area with the significant medical issues that Sarah endured in her early years. We traveled that part of our journey alone, and it was incredibly lonely. What I have been so pleased to discover with the blogging world is we no longer have to walk alone. There are many wonderful families so willing to share their support and love. And to share their hardships. So that others may learn from them, but sometimes simply to vent because there are so few around our "live" world that understand.

For the most part, Sarah and I have stuck close to the issue of Down syndrome. But there are a few blogs that I have come across that so inspire me. The writers are blessed with a gift of expression that I envy. Most are moms. Moms like me who either during their pregnancy or shortly after giving birth, had their dreams of a perfect child shattered. They are learning to cope with a different set of circumstances than they originally planned.

Then there is Blogzilly. I first discovered this blog while posting a comment on Zoey and Heather's blog. I was intrigued by the name, and curious about the photo that accompanied it. Yet, what really struck me was the depth and insight of the comment that had been left. So I lurked on over to see just who was this creature. What I discovered shook me to the core. I spent the better part of that entire evening reading this story from beginning to end.

As it turns out, Blogzilly is a father. With an adorable little boy who has been diagnosed with Infantile Spasms. I've noticed more and more kids with Ds also being diagnosed with IS as it is referred. Anyway, Blogzilly and his family recently came to the Cleveland Clinic for surgery. As he wrote about their ordeal, I could picture many of the scenes he was describing. Sarah had often been in one of the rooms across the hall from M-35 where the children were taken after their brain surgeries. That's not why I keep going back to read the blog though.

I am enthralled, even mesmerized with the manner in which Blogzilly writes. It is raw folks, pure raw emotion written by a dad that has had the life sucked out of him. And he is not afraid to tell you. He has a way of letting his fingers reflect on the keyboard what is swirling around in his head. It is painful, yet it is so eloquent. It so encompasses the real story of a family dealing with the not so pretty side of life. Today, he is looking for a 50th person to follow his blog. I guarantee you will not be disappointed. Oh, and his pictures and graphics are outstanding. It's just too bad he hates our Cleveland Browns:)

An addendum: I forgot to mention...as you can tell from his comment to me today...he has a superb sense of humor too. Thanks for giving us a glimpse into your world Ken, you are a gem. All the best to you and your family.

Guess Where I Went?

LOL!! Does this mailbox give you a clue?

I even had a panoramic x-ray taken. It is pretty cool how that thing moves around your head. You can see it in the video below. I had to stand really still.

The dentist wants to see where my wisdom teeth are. Guess what? I only have three. My mom was sorta happy about that. She thinks we should get a big discount when it comes time to take them out. She also talked to Dr. Vala about me getting braces. I'm not happy about that. I said, "No way." "C'mon Mom. Right now I have to go to yoga," phew got out of that fast.

Smile, Looking Good Today:)

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A Halloween Project

Over the years I have been in the hospital for so many holidays. That's how I know that the Easter bunny arrives in a white limo and Santa Claus doesn't always come down a chimney. Sometimes he rides an elevator. And the Halloween witch doesn't just ride a broom, sometimes she rides in a wheelchair.

I really liked it when I would get special little treats delivered to my room. So this year we decided we would make some goodie bags to deliver to the Children's Hospital at the Cleveland Clinic. First, I am making some cards...

Do you recognize these? I gave you a little sneak peak a while back. They are the new Build-a-Bear die cuts from Stampin' Up! I have to dress them now.

I am giving them a skirt...

...and shoes...

...now a shirt...

...and a jacket...

...and now a witches hat.

...here is what our first batch looks like. I have to start over now to make some more.

Sibling Sunday

I'm still looking for pictures of my playset. Look how cute my baby brother is.