People First Language - A Reminder

Today is the last day of Down Syndrome Awareness Month.  It has been quite the challenge to blog every single day.  I found myself some nights running into the computer at 10pm just to make my 31 for 21 Blog Challenge post!  I made a point to make sure that everything was NOT about Down syndrome to make the point that our lives do not solely revolve around Ethan having Down syndrome.

I have been meaning to revisit the topic of People First Language for a while and just this morning my friend Jenna posted on Facebook this morning about it, so I am taking a moment to touch on it as well.

People First Language is simple:  Whether you have Down syndrome, Autism, freckles, cancer, or one leg, you are a PERSON FIRST.  We are not defined by labels or diagnoses, it is just part of who we are.

Examples:

COMMON INCORRECT VERBIAGE:  He is a "Down child", "Down's Boy", "Down Baby", or a "Down's kid".

CORRECT:Ethan is a boy with Down syndrome.

Down syndrome is just part of his genetic makeup- it does NOT define who he is. 

INCORRECT:  Ethan is a four-eyed boy.

CORRECT:  Ethan is a boy who is supposed to! wears glasses.

Some would say that this is just another act by the PC Police, I say it is an act by parents and loved ones of someone with a disability asking for respect.  Respect.  Respect.  Respect.

I understand that times have changed, and are continuing to change and that sometimes change takes time, so what I ask you all to try your hardest to do is this:  the next time you find yourself not using People First Language, make a note of it to not do it again.  I realize slip up's happen when you first learn new things, but with time, you will use appropriate and respectful language.  And, I know of a precious 8 year old little boy who would very much appreciate it, thank you. ☺

Triad Flight of Honor

The other night, Scott, Ethan, Baby Loren, and I set out to the Greensboro airport (PTIA or GSO) to welcome home the second Triad Flight of Honor.  We had seen the coverage for the first TFoH and were very emotional and we said that the next time around we were going to go and be a part of it.  We were going to go and be a few more bodies showing up to honor, salute, and respect the men and women of WWII who were being treated to a special trip to see the WWII Memorial in Washington, D.C. 

I was emotional thinking about it, but as soon as we heard the roar of cheers from the crowd as soon as the first veteran was being wheeled down the walkway in his wheelchair my heart started racing.  Then it happened.  A man directly in front of me saluted the men.  I choked up right then and there.  I just think that there is a certain level of respect for our military that seems to be lacking these days and to see the respect given to these people who served for US- these men and women who served to protect ME, to protect MY family, to protect YOU and your family...I was filled with emotion and I am very thankful for their service.

Unfortunately, the crowd was a little too much for Ethan, so we had to leave early but wow- what an honor to be there!

(Not the actual plane)  The plane was provided a water salute at departure and arrival.  Pretty cool, huh?

As we left, I started thinking about how I couldn't think of any immediate family members who were in ANY war.  I had to call my grandparents to see if my Poppy was in the military at all, or even Great Grandpa.  Nope, neither one.  Is that odd? 

A Birthday Wish

Happy Birthday to Ethan's Grandma Lynda, AKA:  Scott's Mom.  We hope that your day was fabulous!  Sorry that Ethan didn't get to call you tonight- he fell asleep at 5:30 and hasn't woken up!!!  We love and miss you!!!

BONK!

Ethan bonked his head around 4:30 this morning.  We don't know what he hit, but it could have been his TV stand.  It sure was a bleeder, as you can see from the blood stained band-aid. 

I got the band-aid off in his bath and it didn't bleed anymore, thank goodness.  He did rub it on his carseat, though and it did NOT feel good.  It then started to bleed a tad bit more, but nothing major. 

I am hoping that he just rolled out of bed and hit his head instead of possible seizure activity.  He was on sensory overload last night, so I will just be sure to bring it up at his neuro appointment on Wednesday! 

Confession

Sometimes, I don't want to see other kids' birthday party pictures/Christmas pictures/playdate pictures. It's pure jealousy and selfishness. Thankfully, I said "sometimes". I would really not like me as a person if it was an "always" thing.

I've really been trying to figure out why this *sometimes* bothers me more now than before and the only thing that I can come up with is this: When Ethan was 2, he was still in 12-18 months clothes. He was still so babyish. You don't get upset if a baby goes to a party and just wants to sit there or get into things...you don't care if a baby doesn't care about opening presents.

Now, that Ethan is obviously not a baby anymore- even by appearance, it is just harder. And, I have a slight suspicion that it is just going to get harder and harder as he gets older. *sigh* So, prepare for random "confessions and pity parties" because that's just how things are gonna roll when it comes to my emotions. Please don't judge, bare with me.

More Seizure Talk

I don't remember if I have mentioned this already, but Ethan has been having balance issues. This is a new development- within the past few weeks. He will walk into walls or even just fall over when crawling on the floor. He always falls to the right. My immediate thought was neuro since we already know that he has a smaller cerebellum, which affects balance.

I played phone tag for almost two weeks with neuro, but finally touched base at the end of last week. Ethan's neurologist wants to have his thyroid checked again. I asked if thyroid issues cause you to walk into walls and the response was "the thyroid can make you do lots of weird things". Ok, so I need to take E up to have a blood test. But, our appointment that was originally scheduled for March has now been moved up to next Wednesday.

My friend, Kimberly, asked me if Ethan had any fluid in his ears that may be causing him to be off balance. Hmmmm, Good Point- especially since his tubes fell out a couple of months ago. We saw the ENT today and Ethan's ears are perfect. No sign of infection or fluid, but he had Ethan do a tympanogram to check his pressures and those were fine too. He told us to definitely stick with the neuro idea because the only other thing that really might be causing an issue would be vision, but we have already cleared that too.

One thing that we also discussed with our ENT was how Ethan hasn't been sleeping very well and how on Saturday night after Carowinds, he kept waking up disoriented and kinda freaked out. I was laying down with him, so I saw his face and it was almost like he didn't know where he was and/or who *I* was for about 5-10 seconds. This happened numerous times during the night. I was surprised how many times he woke up considering the exhausting day we had at the theme park.

When I was telling our ENT about that night, he asked me if it seemed like he was having a seizure. I really hadn't thought about it until he said that, but considering the type of seizure I question he may have (sensory seizures), it would make sense ESPECIALLY because of how much sensory input he had during the day.

So, we are back to neuro. This will definitely be a topic of discussion next week. It makes it so hard to diagnose these types of things when the child is non-verbal and can't tell me if he has a headache. I just really think that there is something extra going on and my gut tells me that it's not his thyroid. But hey, I could be wrong.

Down Syndrome & Leukemia Article

http://www.medindia.net/news/Scientists-Identify-New-Chromosomal-Abnormality-in-Leukemia-Associated-With-Down-Syndrome-59671-1.htm Interesting...

A new chromosomal abnormality in acute lymphoblastic leukemia (ALL) that appears to work in concert with another mutation to give rise to cancer has been identified by scientists. They revealed that the latest anomaly is particularly common in children with Down syndrome.

The findings have already resulted in new diagnostic tests and potential tools for tracking a patient's response to treatment. The research, led by scientists from St. Jude Children's Research Hospital, also highlights a new potential ALL treatment. Clinicians are already planning trials of an experimental medication targeting one of the altered genes.

This study is published in the October 18 online edition of Nature Genetics.

"A substantial proportion of children with ALL lack one of the previously identified, common chromosomal abnormalities. Also, children with Down syndrome have an increased risk of ALL, but the reasons why are unclear," said Charles Mullighan, M.D., Ph.D., assistant member in the St. Jude Department of Pathology. Mullighan is senior author of the study, which involved scientists from 10 institutions in the U.S. and Italy. "Our results have provided important data regarding the mechanisms contributing to leukemia in these cases," he said.

Instead of the normal pairs of 23 chromosomes, individuals with Down syndrome inherit an extra copy of one chromosome, in this case chromosome 21. Chromosomes are made of DNA and carry the genes that serve as the assembly and operations manual for life. Down syndrome is associated with a variety of medical and developmental problems, including a 10¬-to-20–fold increased risk of ALL. But patients with Down syndrome rarely have the genetic and chromosomal alterations commonly associated with childhood ALL. Until recently the genetic basis of the elevated risk for these patients was unknown.

The new gene alteration was identified by St. Jude scientists following up on an earlier observation. They had previously found a recurring deletion in a region of DNA duplicated on the X and Y chromosomes. The region is known as pseudoautosomal region 1 or PAR1.

The PAR1 deletion was found only in patients with a subtype of ALL known as B-progenitor ALL. It was most common in children with both B-progenitor ALL and Down syndrome. In this study, investigators screened almost 400 children with ALL, including 75 patients with Down syndrome. The deletion was present in 7 percent of patients with B-progenitor ALL, but in more than half of the patients with both B progenitor and Down syndrome.

The deletion results in a fusion of two genes, P2RY8 and CRLF2. The fusion puts CRLF2 expression under the control of the P2RY8 promoter. As a result, CRLF2 expression jumps as much as 10 fold.

"CRLF2 over-expression identifies a group of ALL cases which were not previously well characterized, and suggests some novel treatment approaches that may improve patient survival. Patients with Down syndrome are particularly vulnerable to complications from standard chemotherapy, and could therefore benefit from novel therapies," said Karen Rabin, M.D., of Texas Children's Cancer Center and a study co-author. She is a Baylor College of Medicine assistant professor of pediatric hematology/oncology.

The CRLF2 protein normally forms part of a receptor where a small growth factor known as a cytokine binds to white blood cells known as lymphocytes. Both the cytokine, thymic stromal lymphopoietin (TSLP), and CRLF2 are known to play important roles in the development of immune cells known as T lymphocytes as well as in inflammation and allergic disease. They had not previously been linked to leukemia.

CRFL2 is the second gene implicated in development of B-progenitor ALL in patients with Down syndrome. The first, a gene called JAK2, was identified in 2008. JAK2 belongs to a family of genes that produce enzymes called kinases. If permanently switched on, kinases can trigger the uncontrolled cell growth that is a hallmark of cancer.

JAK mutations have also been linked to other cancers. Drugs targeting JAK kinases are already in clinical trials against a variety of blood disorders in adults. Additional trials are being planned against other subtypes of childhood ALL.

In this study, researchers reported a significant association between alterations in both the CRFL2 and JAK2 genes. Almost all JAK mutations were observed in patients with CRLF2 alterations. Almost 28 percent of children with Down syndrome and ALL had changes in both the CRFL2 and JAK genes.

"It has been a mystery as to why the JAK mutations in Down syndrome ALL are different from those seen in other cancers," Mullighan said. "Here we show that the JAK mutations in ALL are almost always observed together with a chromosomal alteration that results in over- expression of CRLF2."

When both the JAK mutation and increased CRLF2 production were introduced into white blood cells growing in the laboratory, those cells were transformed and no longer needed cytokines to grow. Neither genetic alteration on its own produced the same effect. Researchers also reported their impact could be weakened by the addition of drugs that target JAK mutations.

"We showed that the two proteins, CRLF2 and mutant JAK2, physically interact, and together transform white blood cells. This work has identified a new pathway contributing to the development of leukemia," Mullighan said. A next step is to determine if these mutations also interact in mouse models of ALL.

Parenting.com

Because October is Down Syndrome Awareness Month, the good folks over at Parenting.com highlight children with Down syndrome! Last year, I submitted a picture of Ethan that I adore from when he was two years old.

This year, I submitted one of my favorite pictures that Kayleigh took for her Reflections project- plus, I thought it would be really cool for a 15 year old to see their work gone national! :)

I was looking through the albums tonight and found that our picture was put in album 6! You can see it here!

What I found interesting was that both years, Ethan's picture is #17 in the album. It's a good number- Scott and I were married on the 17th. ☺

In the same album as Ethan are our friends, Kayla and Karli!!!

I haven't made it through all of the albums, but also in the same album as Ethan is a baby in Mariposa!!! So, to all my 'Posa family, be on the lookout for an extra-cute little bundle of Trisomy cuteness!

Make A Wish Reunion @ Carowinds

Every year, we are invited to Carowinds for a Make A Wish family reunion.  MAW sends us a parking ticket and has our admission tickets available for us at the door.  This year, Scott could not go because he was a vendor at the Black Walnut Festival.  Since Scott couldn't go, I asked Mary if she could go.  When she said yes, I asked Ethan's friend, Gracie, if she wanted to go to (really, I asked Gracie's parents).  Gracie excitedly responded while jumping up and down, YES!  Once I told Ethan that Gracie was going to get to go, he just smiled.  He loves his Gracie!!!

Well, with Mary getting the flu earlier in the week, she wasn't able to go with us today so it ended up just being me, Ethan, and Gracie.  It worked out that we also met up with our friends, and fellow MAW family, The Barnes'.  Gracie was able to go on some of the bigger rides that Ethan couldn't because she could ride with The Barnes'.  Perfect.

The weather was less than perfect when we got there, it poured rain actually, but it only did that for about 15-20 minutes, THANK GOD!

Ethan had a fair sensory day.  He basically freaked out on the rides, but still smiled and never cried, but he was fine with the other people and the noise.  He was so sweet- while Gracie rode a ride with The Barnes family, Ethan and I waited on the exit ramp.  I had him in an area that didn't get in anyone's way.  He was such a sweet greeter to all the exiting passengers, but kept his leg out for space distance...all while trying to give high five's to everyone that walked by!  Sweet boy...


What else?  Gracie got her face painted a Fancy Butterfly and the young gentleman that painted her face saved the day when he came running after me with my camera!  I had left it after paying!  OMG- that would have sucked! 
 
(insert frustration here.  Blogger is not my friend this evening!  I just lost half of this post.  Grrrrr....)



The forecast for today was not the greatest, but not too bad either:  Rain in the morning and sunny skies after.  We could deal with that.  I figured it would rain on the drive down to Charlotte- which it did- and then we would be free of rain.  Nope.  But, it wasn't that bad.  It poured on and off for about 15-20 minutes after we got there.   It was not cold though, so the rain just made it humid and sticky.


So, we rode rides, had lunch, rode more rides, and before leaving we HAD to get a funnel cake.  It's like amusement park law that you must have funnel cake!  LOL.  We shared...Ethan even got the really soft pieces. 

I am so happy that Gracie got to go with us today!  She is the most loving, kind-hearted, accepting, God-loving, sweet, innocent, gracious girl.  We are so blessed that she loves Ethan so much!  And, he loves her back!  You should see how Ethan lights up as soon as he sees Gracie.  But, she also gives him tough love when he needs it.  I hope that she is in our lives forever because she and Ethan have a very special bond.

Ethan was exhausted by the end of the day (so was I!!!) and he zonked out within five minutes out of the parking lot.  But, he woke up after we dropped Gracie off with her Aunt in Concord and he never went back to sleep.  He is now sleeping like a log.  

To sum up, I will quote Gracie as we were about to leave..."Today has been the BEST day!".  ☺

(I gotta say, I don't know what is going on with Blogger coding and stuff, but it's getting on my nerves! My page is all messed up and this post has hit a bad nerve as far as how it is looking. Ok, maybe I am a tad tired and cranky...)

Pray for Polly

Polly is my friend, Gillian, from Downsyn's daughter who was just recently diagnosed with Moyamoya Disease. Polly will be having at least two brain surgeries in order to keep the disease from progressing. Ethan was tested for Moyamoya back in May and I remember the fear of the possible diagnosis. Please pray for Polly and her family!


Grab This Button

Random Question

I have a question for the moms out there, most likely with a child with special needs...

If you have a non-walking toddler child and an infant, how do you handle them both at the same time? Stroller? Sling? By being MEGAMOM and carrying BOTH children?

When I have my friend's infant daughter, I put her in the Baby K'tan and walk Ethan one-handed with my other available hand. The other day when we were at his prior school, he was not as cooperative with this and it was more difficult. If I had to carry him, I could have, but I didn't want to. But, it got me thinking about the older kids out there that don't walk at all. What do those parents do? If Ethan weren't walking, I would probably still put the baby in the sling and put Ethan in the stroller. That seems easiest. How about you?

Friends

I have had Ethan home from school the past few days because of illness in his classroom.  He has been ok and I just don't want to run the risk of him getting the flu- which Ms. Mary may have.

I took Ethan over to his previous school for a visit.  Oh, how we miss it.  It was like a visit home.  He was able to see his favorite custodians, favorite secretary, favorite principal, favorite teachers, and mostly- his friends. 

No, these kids don't call him, but if you could see the looks on their faces when they saw Ethan at their school again.  It was like a kid at Christmas!  All of them say that school just isn't the same without him.  We saw other kids- kids that I don't know- signing in ESL (Ethan sign language) "hello".  THEY REMEMBER!  A lot of these kids haven't seen Ethan since June and they remembered how to say hello to him!  My heart about melted.

One moment that really stuck with me...

We were in a classroom and a boy that knew Ethan from last year told a boy who didn't know who Ethan was that Ethan didn't talk.  Then the "new" boy asked me why he didn't talk.  I said that he just talks with his hands since it is harder for him to use his voice.  Then, a little girl sitting at the table didn't even skip a beat when she said, "He just does things a little different.  We are all different and that's ok.  He just uses sign language." 

 How completely precious is that?  How wonderful that this little girl, 7 years old, sees it and she gets it.  We are all different in one way or another.  But, we are also more alike than different.  

SPD & Nail Trimming

It sucks.

Last night, I was seriously asking God WHY me?  If I am going to have a child with sensory processing disorder {SPD}, then WHY do I have rheumatoid arthritis {RA}?  And, if I am going to have a child with SPD and have RA, then why is my RA the worst in my hands?  WHY, WHY, WHY???

We have had a limited amount of non-freak out nail trimmings.  My mom cut Ethan's nails in a snap last year...I need her trick.  Ethan pulls his arms, wiggles his fingers, kicks his legs...the grip I need to keep in order to actually clip his nails makes my RA-stricken hands beg for mercy.  It is such an ordeal.  We either have to pin him down to the floor, or I need Scott to hold him down.  I know it's frightening for Ethan and I know he can't help the freak out's, but oh.my.gosh.  We have to figure something out!

Pray for Noah

Noah is a sweet little boy that I have "met" through my friend Kimberly.  Kimberly is friends with Noah's parents in Texas and I have been able to speak with Noah's mom, Amy. 

Noah was diagnosed with high risk pre-B ALL (Acute Lymphoblastic Leukemia) back in July.  Noah also has Down syndrome.  As many can imagine, my heartstrings are pulled when I see another child battle the beast of cancer like Ethan had to. 

Noah has been able to stay home after treatments, which I think is amazing since we were in and out of the hospital so much, but Noah has just been admitted to the hospital with pancreatitis caused by one of his chemo meds.  He has been complaining of pain in his back and neck for a few days- I was even on the phone with Amy yesterday and could hear Noah growling in pain, poor bubs.  Today, an x-ray was taken and the pancreatitis was found. 

He will be in the hospital at least a few days, possibly longer.  His counts have been very poor lately and Amy told me that he is very pale, weak, and has dark circles under his eyes.  The fear of relapse is always there for a cancer mom, I can assure you that is a fear that never goes away, so I am thanking God for pancreatitis and not a relapse. 

Please pray for Noah's full recovery from this setback and that he can continue on with his leukemia treatment so he can claim victory over the beast!  You can visit and offer words of encouragement to the family on Noah's Caringbridge site here.

Thank you!!!

Welcome to Holland

I will join the many families posting 31 for 21 by listing "Welcome to Holland" as one of my favorite symbolic poems.  It was written by Emily Kingsley to put into perspective what life with a child with special needs is like.  It was first given to me when Ethan was in the NICU at Valley Children's Hospital.  I immediately fell in love with the message.  I connect with it so much that when it came time for me to cover up my tattoo, AKA:  act of stupidity by a certain 18 year old, I wanted to pull the symbolism of Holland into the new tattoo.

What the tulip portion of the tattoo represents:
3 Tulips because, we are a family of 3, I am one of 3 sisters, and Ethan has an extra 21st chromosome, AKA:  Trisomy 21  AKA:  Down syndrome.  You will notice that there is one tulip that is a different color for the extra chromosome.  And, obviously, tulips grow in Holland.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Ethan's New School Pic

Monster Mash!

Try JibJab Sendables® eCards today!

This took FOREVER to make, but it's so cute. I happen to think the Mad Scientist is pretty cute! And, I couldn't have picked a better character for Ethan's Uncle Kolt. LOL!!!

Treasuring a Quiet Moment of Motherhood

Today was a DO NOTHING DAY, except go to church. Ok, that's not entirely true...Scott took Delaney to the Wake Forest Women's Soccer game since she has just started playing this year. I am told that she had a good time.

While Scott and Delaney were at the game, Ethan and I stayed home. It was too cold to take Ethan out, especially because he has been trying to catch a cold. So, we had lunch, played a while, and then we laid down for a nap.

One thing that I used to say when Ethan was younger was that I was lucky that I get to have my baby longer. I am still lucky that Ethan is my snuggler for a nap. I have learned that I can ignore the dishes that need to be done or the floor that needs to be mopped if I can have my snuggle time with my son. It makes my heart smile knowing that he is with me and happy to be there. Even better is the sweet smile that he gives right before he falls asleep and it's even there when he wakes up. It's almost like he is saying, "I love you for being here with me".

Ok, now I am crying...I have so much love for this child of ours that I am crying.

Happy Anniversary to US!

Today marked our 11th wedding anniversary.  ELEVEN years!!!  Where did the time go?  Looking at today, I am so thankful for our beautiful weather on our day because today it was flippin' cold and dreary!  It was an absolute perfect day back in 1998...

We never could have guessed what journey we were about to begin, but hopefully with each passing day, we will continue to grow individually and together as a couple.

I know that I would never have been able to get through everything that we have faced without Scott by my side.  He is definitely my strength when I am weak and vice versa, which I think is pretty cool.

Ethan's absolute favorite person in this world is his Daddy.  So, I am thankful today for the husband that God had meant for me.  Thankful for me, thankful for Ethan, and thankful for any future children.  Here's to another year of being FOREVER TRUE. ♥

Happy 10th Anniversary, Chris & Theresa!

Ten years ago, my soul friend married her soul mate.  It was such a beautiful wedding at Gainey Vineyards in Santa Ynez, California.

I have to say that while the wedding was incredibly gorgeous and the reception was a ton of fun, the night before the wedding had to be a highlight of the weekend!  FAB FOUR~ you know what I am talking about!  ...ok, ONE, TWO, THREE, FLIP!  And, the incredibly LOOOONG, longer than it should have been drive home was an adventure.  You should all have seen the cell phone I had back then!  LOL.  Oh, and Cinders...I totally like to dip my bacon in milkshake.  (inside joke) 

Theresa (T*Potts) and Chris have been a wonderful support to my family!  I don't know what I would do without them in our lives. 

Happy 10th wedding anniversary to Chris and Theresa!  May your love continue to be groovy! ☺



We love you!

Reece's Rainbow

I have quite a few friends in the Down syndrome community who have adopted children with Down syndrome from overseas.  I admire them all and am, quite honestly, a little envious.  I would love to save a child from a death sentence institutionalized living.  No joke.  Once the children are transferred out of the baby home at age four/five, their chance for survival is grim.

Reece's Rainbow is a 501c3 organization that helps these families bring home children.  There are so many kids that need to be saved and I think the #1 reason people say that they would LOVE to bring a child home from overseas, but they don't have the money.  Reece's Rainbow has funds set up for the children so you can still help bring one or more kids home to their forever families.

Watch this montage that Andrea, founder of Reece's Rainbow, has put together.


Reece's Rainbow

Taxes are done man!

That's my spin on the line from the movie, "Don't Tell Mom the Babysitter's Dead". 

And, we don't owe anything, PRAISE GOD!!!  Woohoo!

This is my "We're More Alike Than Different" scenario for the day:  Us families that have children with Down syndrome still have to do taxes like everyone else, and we hate it too!  LOL.

He IS such a sweet boy!

Ethan has been so precious...he will come into bed with us in the morning and just snuggle. Then, once he wakes up he will just smile in my face. I am the farthest from being any type of morning person, but how can I deny such a sweet face smiling back at me?

These are the times I cherish- when nothing else matters except love.

Fair Pics

Enjoy the slideshow!

We did not anticipate to be at the fair very long because Ethan typically has a sensory overload shutdown about an hour or two into the visit.  Not this year!  Well, I should clarify that he was fine as long as he wasn't within a crowd.  He would put his leg out almost as a protective action so no one came too close.

Ethan went down the Super Slide and rode the swings, fire truck, and ducks.  He went down the slide twice, once with Daddy and then again with Mary.  The original plan was for him to ride on Mary's lap on the way down and I would ride down beside them, but the wonderful carnival worker jerk said that I couldn't because of some strict "no racing" policy.  Whatever.  I'm not racing you dipstick, I am simply riding down with my son.  Anywho, not bitter- not bitter at all!

Ethan did NOT like the fire truck ride at all.  It was basically like a bus that went up and down in a circle.  Kinda freaked him out!  He was very happy to get OFF of that ride!

The swings...he was all happy just sitting in the seat, but as soon as they started to raise he kind of started to freak out a little.  The look on his face, oh my...I had to laugh mean Mommy!.  But, by the end of the ride, he relaxed a bit.

The ducks...he was a little unsure once it started, but he held on tight to Ms. Mary and enjoyed himself.

I got in a couple of rides myself.  I needed my sister with me to go on the rides because Scott and Mary are wusses.  "I'm too old, I'll get sick"...blah, blah, blah.  Whatever wusses.  LOL.

We were all completely and totally exhausted once home and, well, if you read yesterday's post you already saw the effects of fair exhaustion.  :)

Pay It Forward Moment

We were given tickets to get into the fair, and I was able to buy some ride tickets off of a friend for significantly less than if we would have gotten them at the fair.  After the duck ride, we decided that Ethan was done and we were done too, all we needed was some last minute junk food (ie. fried oreos, frozen banana...), but we had some ride tickets left.  I decided to give them to someone who appeared to deserve them.  I happened to turn around and see a family with a couple of young boys and the parents were counting money while the boys looked on with "PLLLLEEEEEAAASSSEEE" looks.  I went up to them and asked if they needed some ride tickets.  They laughed and said, "As a matter of fact, yeah we do".  I told them that there weren't many left but they could probably get a ride or two out of them and they were very thankful.  I don't think that they had enough money left to pay for more ride tickets.  I hope those boys enjoyed their ride(s).

BUSY weekend

Yesterday began with the Buddy Walk bright and early. Then, since it was Madison's 9th birthday, we went to Chili's for dinner- her choice! Not Chuck E Cheese or anything "kiddie", she wanted Chili's. Ok then!

Madison is such a wonderful young lady! She never meets a stranger and has the most descriptive vocabulary out of any child that I know! She referred to Mary's horse, Dodger, as the most wonderfully beautiful horse that she had ever seen! :) Well, for her birthday drink she didn't want chocolate milk or a milkshake, she wanted a margarita (non-alcoholic, of course!)!!! When everyone had their drinks, Madison made a toast! And, I have to say that it was one of the best toasts that I have EVER heard! After dinner, we went back to Madison's house for presents. Ethan got to play with all the dangling feet and the new puppy, Rockson (omg, SO cute! Shep could smell that puppy on us the second we came home! Too funny.) So, happy birthday to our Madison Jean. We love you so much!

Today, we had church and then Mary met us at the house and went with us to take Ethan down to the fair since it was the last day and we had yet to get him down there to go on some rides. I will post another day on the fair- I have some great pics of Ethan ahem, Farmer Ted. One thing I can say for now is that we were WAY exhausted when we came home! I fell asleep on the couch and I felt Ethan grab my arm and climb on me. I asked him what he was doing, and Scott replied that he was trying to crawl up with me to go to sleep.

I can hear you saying "awwwwwwwwwww" right about now! :)