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!

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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! :)

Buddy Walk 2009

Today was our annual Buddy Walk. To be honest, I was not all that excited for it this year. I cannot tell you why, but if I wasn't already obligated to registration, I may have continued to sleep in. Boy, am I glad that I was obligated to registration! I love, love, love the Buddy Walk! I love seeing all of the people come out to support Down syndrome awareness! Love, love, love. All the new babies- love. All of our friends with kids with Ds who we don't see very often anymore- love. The smiles- love. The talent show- love. Watching Ethan hold his Daddy's hand and walking the walk for the first time without any assistive equipment- ♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥!!!

Ok, so Ethan didn't walk the entire walk, but that wasn't really his fault. His Daddy wanted to have him up on his shoulders. I still ♥ this. I forgot my camera in the car, so my only pics are from my phone. Total bummer because Ethan was way smiley up until overload shutdown after the talent show.

There is a petting zoo every year. I don't really go over there because Ethan would just want to pull at their ears or something. Well, Ms. Mary was notified that there were snakes and she got all giddy with excitement. Mary surprises me all the time- she can't stand to walk on the beach, but she can have a python wrapped around her neck? Boggles my mind. No thank you. No snakes for us.

It was a great day- started off cloudy with some sprinkles, but it ended up being sunny and beautiful. Ok, so it was humid, but not miserable. Special thanks to Lisa Kennedy and all of the volunteers for putting together an awesome Buddy Walk!

Still Grieving?

I spoke with a counselor yesterday because, well, I think it's a healthy thing to do. I didn't know where to begin, but with the help of one simple question, this babbling brook had no problems! I always tell myself that I am not going to cry yeah right. Yeah, I cried. From getting the possible Down syndrome diagnosis while alone to being alone when he was about to be diagnosed with leukemia, the counselor thinks that I am still in a grieving process. I don't really think about it like that, but I suppose he's right.

The older Ethan gets, the harder it is. I have written about feeling isolated before and I meant it. It was not some crazy emotional post, it is real. We have other friends in the Ds community who have faced the dual dx of Ds and Autism and I think that we could all agree that the Ds is the easy part! I would NOT take away Ethan having Down syndrome. I would, however, take away the PDD-NOS. The lack of communication and frustrations is enough to drive me crazy some days. Some would think that Ethan being an only child would make things easier, but it doesn't. If anything, it makes things worse because I am constantly reminded of these challenges one on one. There goes that babbling brook again!

Anywho, do we ever stop grieving the loss of the child that never came to be? I know that we move on and we love wholeheartedly, but do we ever stop grieving deep down? That's my deep thought for the day- please ponder and let me know.

One year ago today,

I boarded a plane with 12 others to the trip of my lifetime- Kitale, Kenya, Africa. I really don't think that a day has not gone by that I do not reminisce about that mission. The kids at Challenge Farm are on my heart every day and I pray to return to them someday.

I cannot believe that a year has passed- it still seems like yesterday! I imagine myself boarding that plane again and looking forward to the travel to get there in order to see the smiles on the faces of the children that would greet me. I love them all so much.

I never thought that I would be able to leave Ethan like that, but God gave me peace about the trip. I never thought that I would leave my child with Down syndrome, who had also just been diagnosed with PDD-NOS (autism spectrum) to leave the country, but I also had to release the control and remind myself that he has a perfectly capable and loving father that can take care of him when Mommy is away, and we have wonderful friends who stepped up to help care for Ethan while Scott was at work. Everything just fell into place- it still boggles my mind sometimes how when God has a plan, He has a plan, and no matter what doubts I may have, He will make a way if it is His will! My life-altering mission trip to Kenya is a testimony to that.

I also happen to think that I was surrounded by the absolute BEST group of people, and I may be bias, but I am allowed. :) Mama Cheri, Stephanie, Mama Donna, Mama Nancy, Amy (biffka), Amy (LD), Joe, John, Mark, Jamey, Stan, Fred, and Whitney- you are all so amazing and awesome! I love you all.

As Bon Jovi would sing...Keep the Faith. ;)

Behavior con't

Today is slightly better but I may still have a pretty cute kid for sale. I hope to goodness that everyone knows that I am kidding!

Oh, and that picture of the kid in the corner is not Ethan- it comes courtesy of google images. I wish that Ethan understood the "stand in the corner" concept!

Bad Behavior

Ethan is going to be spending lots of time in a corner if he doesn't get a grip on his behavior! Yesterday, he slapped Mary across the face and she said that it was hard! He wants to try and pinch or pull at Baby Loren. He will pull at clothing on other people. He will throw his food. Ugh.

Rrrriing, rrriing...hello, frustration calling!

I think that this is a combination of things, primarily fatigue. He hasn't been sleeping very well the past few nights. Combine that with the jealousy of the baby and I have a non-verbal child who is going to act out because he is not able to communicate properly how he really feels.

I feel bad for him, I do. I just wish that I could climb in his head and understand what he needs. He had "silent" lunch at school today. That breaks my heart, but it is necessary because Ethan thrives off of the social aspect of being at school. He does his work because he knows that he will get to see his friends. Since he could care less about TV or any game in particular, we have had to take his friends away because that means something to him.

Tough love sucks.

He's such a sweet boy, I don't want him labeled as behavioral. I think I also need to remind myself that we all have bad days and I can say "leave me alone" or "not today", he is not able to right now.

Tomorrow is the field trip to the fair...I guess I need to double-up on my patience pill!

Repost: A Baby Is A Baby First

I came across this short article on the NDSC's website. I love the message- it's actually something that I have always said, which is that when Ethan was a baby, he was my baby first and having Down syndrome was secondary to him being my beautiful baby boy.

http://www.ndsccenter.org/resources/package2.php

There is nothing quite like a baby…there's a lurch in the heart when we touch the beginning of a life in the small person of an infant. For some parents, the lurch is made more poignant, even painful, by the fact of their baby's diagnosis of Down syndrome. Recently, I've had the great pleasure of holding a number of soft, beautiful babies who have Down syndrome. Their parents want to find out what it all means, what they can do, what to think about the future. The first professionals to talk to the parents of babies with Down syndrome tend to discuss the differences parents may see, difficulties babies will encounter. Armed with information about what milestones their child may not reach, what problems she may have, what services they should obtain to avoid potential problems, new parents want to help their babies as soon as possible. So they come to me (and to numerous others) to get this help…to find therapy, activities, and solutions to problems that may or may not exist. We just don't know, at an early age, in exactly which ways Down syndrome may affect a child. She may be really good at cognitive activities, but have significant delays in movement… thereby falling behind her peers in playground and paper-and-pencil activities. He may be fairly good at gross motor, excelling in sports. Ocular control may be an area of need, or may be perfect. Language may be good, or may need lots of work. However, one thing we know for certain… babies don't deal with these things no matter what their chromosomes look like. They lie down and expect to be carried, cuddled, talked to, fed and generally catered to. They learn they are lovable, cute, and the center of the universe. They begin to know who their family members are, and who is the soft touch in the house in the middle of the night. If these adorable creatures have Down syndrome they are at risk for certain physical and cognitive delays. It behooves parents to keep an eye open for problems that could arise. It's important that they know something about their child's diagnosis so that they can be alert and helpful. But my belief is that the most important things that parents of babies with Down syndrome can do are exactly those things that all parents do. You know: they cuddle, feed, sing and love. Not the kind of things you need a Developmental Therapist for… or any other therapist, for that matter. I want to be clear. Young children with Down syndrome often show delays that need to be remedied so that these kids can be happy with themselves and do their very best. Very young babies with Down syndrome have specific concerns about early development. And doubtless, parents will find themselves driving this child about for ear infections, speech therapy, developmental evaluations, etc. But the main advice I have for parents of new babies with Down syndrome boils down to this: You have a beautiful new baby. There will be some areas that need work, but what you have right now IS PRECIOUS AND PERFECTLY RIGHT. Kate Sefton, Master Developmental Therapist

Jealousy

Ethan tends to get jealous whenever Mommy shows another child any attention. This goes all the way back to when Savannah was born (my friend, Debbie's dd). Oh, he turned green with envy and yelled! Why wouldn't he? He's an only child who is used to always having all of my attention and then some little person comes along and takes some of it? Sha right, he thinks!!!

I have been watching my friend's 8 week old daughter. When I first asked Ethan if he wanted to see the baby, he put his foot out to say NO. I tried again later and he tried to pull her socks off. In the car, he tries to get to her so he can pinch her face. He also shakes her carseat in the car.

I have been really trying hard to give Ethan equal love and to make sure that he knows that his place in my heart is not being threatened by another child. I guess something is working because the other night, he smiled at her and let me bring her closer to him. When I asked him if he wanted to give the baby a kiss, he leaned in and gave her the sweetest little smooch on the forehead! Awwwwwwwwwww!!! If only I had another arm...two to hold the baby and one to take a picture! I'm going to work on that picture though! ☺

Reflections Project

I was asked by a friend's daughter, Kayleigh, if we would participate in her National PTA Reflections Project. The theme this year is: Beauty is...

Today, we met up with our friends to let Kayleigh have fun taking pictures of the kids because her first thought when needing to define beauty was: Children with special needs. {awwwwww!} I couldn't agree more. Here are some of the pics that she captured of Ethan. Quite the talent for 15, if I do say so myself! Thank you Kayleigh!

Reposting: Online Hate Speech

I would like to ask you to head over to ReJenerationS to read Jen's post regarding online hate speech. Thank you, Jen, for such an awesome post!!!

ReJenerationS: Online Hate Speech

31 for 21 - October is Down Syndrome Awareness Month

Unringing the Bell is hosting the 3rd Annual 31 for 21 Challenge. I participated for the first time last year. I only missed a couple of days, which I thought was pretty good considering I was getting ready to head to Africa, and was then gone for 10 days, and then suffering from a good case of jet lag! The challenge is to post a blog at least once a day in honor of Down Syndrome Awareness Month. Let's see if I have that much to say! LOL!

I will probably write more about this later because I only have a minute, but one thing that I so thankful for is being a member of such an awesome Ds community! I have met some of my best friends because our babies have that extra 21st chromosome! Today, I know that I met someone that will become a close friend all because her baby boy with Ds was just recently diagnosed with the same kind of leukemia Ethan had (ALL). I am so grateful to be able to be someone who has "BTDT" (been there, done that) for her. I am grateful to be that support system for her.

So, I have a favor to ask: Please say a prayer for Jack. He is 5 years old and in the midst of the fight of his life. Cancer is a beast and it sucks. Prayer and support get you through the trial.

John 16:33
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”