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.”

Shep update - Pathology Results

The vet called yesterday with Shep's pathology report. The report really didn't offer any definitive answers, but it did say something to the effect that there were differentials of either fibrosarcoma or tissue sarcoma, both of which are cancers. She said that we would have to have a biopsy done in order to know for sure which one we were dealing with and at what stage, etc.

This is where it gets tricky. If we were to go ahead with the biopsy, the vet would just remove the tumor because he would have to be sedated anyway and we already have a strong suspicion of what the tumor is so all the biopsy would say would be to remove the tumor and we wouldn't put him through two procedures, plus the cost of two procedures with sedation would be crazy high. As of right now, the tumor is not causing him any pain and it has, likely, not spread to any other organs.

So, unofficially officially Shep has cancer. It is most likely the fibrosarcoma. With how quickly the tumor has grown over the past few months and with the pathology report, the vet is fairly sure that this is what it is.

The next step? Keeping him comfortable. The pain meds that we got for him last week have brought back our Shep! He has more energy and is being playful. The tumor will likely continue to grow and we will just have to keep an eye on it. Shep's bloodwork and urinalysis were fine, so that's good news. I do not think that Shep is ready to go yet and I do think that he will tell us when he's too tired anymore. So, we will continue to love our puppy, keep him happy, give him an extra scrap every now and then, take pictures, enjoy our time left- whether that's a limited amount of time or years, and keep him comfortable. That's our goal right now.

Thank you to everyone who has been so supportive of this time.

Not Ready

Last night, Scott came in the house and said that Shep wasn't moving hardly at all and that he found additional small masses on his chest in addition to the larger mass on his chest that has also grown.

Shep is our 11 year old Chow Chow/German Shepherd baby. We got him 2 weeks before our wedding. We hadn't planned on getting a dog, it just happened when our neighbor at the time came over with two puppies in her arms thinking that they belonged to us. There was a boy and a girl, but the sweet boy winked at me and therefore, he stayed. The plan was to put up flyers for the lost puppies and that the owners would come back for him, but they never came. I named him Shep- original, I know- because he looked more German Shepherd when he was a puppy.

I had taken Shep to the vet over the summer to have the mass checked out and the aspirate showed abnormal cells. It was recommended that we have pathology done on a sample to identify the abnormal cells, but we couldn't afford it which totally and completely broke our hearts.

I posted on Facebook about Shep's condition last night and many wonderful people said wonderful things. In addition, mention of putting an animal down came up many times. Yes, I know that he is old, but I am not ready. I am not ready to think of our lives without Shep.

I took Shep to the vet today and she is now referring to the mass as a tumor and she also confirmed that it was much larger. She is sending out the pathology slides today and we should know what's going on by next week. I asked her about "worse-case scenario" and she said that it really depends on what it is. It could just be a benign tumor, or it could be cancer. The look she gave me makes me think that we are not going to get good news next week.

I am SO not ready. I know that Scott is not ready. The look of worry on his face last night was horrible. Scott and Shep have an incredible bond...oh my gosh, I.AM.NOT.READY.

Just found something that brought me to tears

I just found a planner from 2004. I had forgotten all about this planner. Scott had started "journaling" day by day in the beginning and I took over towards the end...

Friday, February 13th

Ethan has fever @ 105.3
Found out Ethan has ALL
Did bone marrow check
Blood transfusion, IV's started
Decadron & Zantac

12:20am Get on plane to NC

02/14/04

Arrived in NC 9:30am
Arrived at hospital 1pm
Platelets
Decadron
Zantac

02/15/04

Decadron
Zantac

02/16/04

Spinal check for ALL
No cells
Spinal methotrexate
Bone marrow check
Platelets
Decadron
Zantac

02/17/04

Had port-a-cath put in
Started vincristine
Decadron
Zantac

02/18/04

Decadron
Zantac

02/19/04

Bad diaper rash
Decadron
Zantac

02/20/04

Had L-asparaginase shot
Decadron
Zantac
Went home!

02/21/04

Threw up
Made everyone sick
Decadron
Zantac

02/22/04

Decadron
Zantac

02/23/04

Came to clinic
Spinal check
Spinal methotrexate shot
L-asparaginase shot
Vincristine
Decadron
Zantac
Diflucan for rash

02/24/04

First night in house!
Decadron
Zantac
Diflucan

02/25/04

Decadron
Zantac
Diflucan

02/26/04

Clinic
L-asparaginase shot
platelets
Decadron
Zantac
Diflucan

02/27/04

Bad diaper rash
Diarrhea
No eating
Called Dr. @ 6:30pm
Shaky, eyes rolling
Called Dr. back @ 11:30pm
Decadron
Zantac
Diflucan

02/28/04

Got to ER @ 12:30am
Started IV antibiotics
Took blood
Got to room at 3:30am
Got morphine
Got to sleep @ 4:30am
Decadron
Zantac

02/29/04

Found out you have a blood infection = min. 10 day hospital stay
Decadron
Zantac
Diflucan

03/01/04

Decadron
Zantac
Diflucan
L-asparaginase shot
Vincristine

03/02/04

Started losing some hair
Decadron
Zantac
Diflucan
Hard times getting to sleep

03/03/04

Decadron
Zantac
Diflucan
Red blood transfusion
Found out that you are O- blood, we thought you were O+!!! {He is actually O+, O- is just universal blood}
Rough night sleeping again :(

03/04/04

Infection id'd as streptococcous pneumonia
Decadron
Zantac
Diflucan
L-asparaginase
Platelet count: 23

03/05/04

Chris turns 30!
Slept better!
Decadron
Zantac
Diflucan
Platelets still 23, other counts coming up

03/06/04

Decadron
Zantac
Diflucan

03/07/04

Decadron
Zantac
Diflucan
Counts still coming up slowly
Platelets up to 32!!
Blood in stool

03/08/04

Decadron
Zantac
Diflucan
Vincristine
Dr. McLean is keeping us here another week...
Platelets: 52!
WBC coming up very sloooowly

03/09/04

Decadron
Zantac
Diflucan
no nap
nurses call you "no nap Ethan"

03/10/04

Decadron
Zantac
Diflucan
no nap

03/11/04

Decadron
Zantac
Diflucan
Rachael came by to visit
Platelets up to 99!!!
Going home Sunday! WOOHOO!!! :-)
Mommy left the hospital for the first time to p/u Madison
Cousin Benjamin Justin born at 10:50pm, 7 lbs. 12 oz. 18 1/2 inches

03/12/04

Decadron
Zantac
Diflucan
T*Potts being watched for pre-eclampsia
Delaney Claire born 5:18pm via c-section, 4 lbs. 4 oz. 18 inches

03/13/04

Savannah turns 1!
Decadron
Zantac
Diflucan
Platelets 171!!!
Normal range! :-)

03/14/04

Aunt Kamrin turns *18*
Decadron
Zantac
Diflucan
Last antibiotic 8am
GOING HOME!

03/15/04

Clinic 8:30am
Bone Marrow - Sedation Suite

REMISSION!!!

03/22/04

Back to school- everyone missed you so much!!!

03/26/04

Methotrexate (MTX) infusion

03/27/04

MTX infusion

03/28/04

Go home

04/01/04

Go back to work - off early
-Clinic, rec'd blood/fluids

04/02/04

Stay home w/Daddy

04/11/04

Samantha's birthday
ER- viral infection, admitted

04/14/04

GO HOME!

04/16/04

Clinic - MTX canceled due to SEG's still too low

04/17-18/04

Good weekend!

04/22-23/04

MTX

04/24/04

Go home

04/25/04

Mouth sores form already :(
Stopped eating

04/26/04

Went to school - all you would drink was chocolate milk

04/27/04

Took you into clinic fearing your counts were low/dehydrated. They admitted you and started you on fluids.

04/28/04

Blood

05/02/04

Started TPN (nutrients in IV) since you still would not eat/drink

05/04/04

Ate pudding!!!! Yay!

04/06/04

Go home!

05/08/04

Gramma turns 50!
Auntie Ang comes to visit!

05/10/04

Counts up!

05/11/04

Take Ang back to CLT

05/12/04

WORK! SCHOOL! Great day!

05/13/04

Clinic 8:30am
LP 12pm
MTX 5pm

05/14/04

Fab Four Reunite!!! CZ, DD, & SLD CLT 7:35am...9:30am due to flight delay

05/15/04

GO HOME!

05/16/04

Mouth sores start

05/25/04

Ethan turns *3*!!!

06/03/04

MTX - 7pm
Kay Ann Sohn brings dinner

06/04/04

Aaron & Debbie Wilkins bring dinner

06/05/04

Allison, Jerry, Mogan, & Holden Barnes bring dinner

06/09/04

CA!!!

06/11/04

Aunt Kamrin's Graduation!

The end.

My Wedding Day

My Wedding Day

from Life With My Special Ks by Mommy to those Special Ks and since our 11 year anniversary is rapidly approaching, I thought I would steal it.

1. What was the date of your wedding?
October 17, 1998

2. Was this your first wedding?
Yes

3. How many times were you a bridesmaid
A couple

4. Did you get married in a church?
Yes

5. Did you write your own vows?
No

6. Who walked you down the aisle?
My dad

7. What were your colors?
Dark purple

8. How many attendants did you have?
4

9. What was your something old?
I don't remember! Oh, shoot- that's bad.

10. What was your something new?
Dress

11. What was your something borrowed?
My veil

12. What was your something blue?
My garter had blue on it

13. What kind of flowers did you have in your bouquet?
White Roses. My wonderful florist (my friend's mom) added and extra DOZEN! Man, that thing was heavy!

14. What were your centerpieces at the reception?
There were none... I don't think. Nope. *same here Renee! none that I can remember anyway*

15. If you could go back is there anything you would change about your wedding?
Ohhh so many things.

16. How old were you when you got married?
21

17. What was your first dance song?
No dancing

18. Did you have alcohol at your reception?
Nope

19. How many guests did you have?
Around 200

20. How long were you engaged before the wedding?
6 months

21. How long did you date before you were engaged?
2.5 years

22. Where did you go on your honeymoon?
Oahu, Hawaii

23. What did your wedding band look like?
It became part of the engagement ring to wrap around the marquis diamond in the center. It also has 3 very itty bitty tiny diamonds on it.

24. What was your most memorable moment about your wedding?
Smashing cake up Scott's nose. He still says he is plotting his revenge.

25. Were you nervous at your wedding?
Not really

Bringing Kellsey Home: iPod Touch Giveaway!!!

Bringing Kellsey Home: iPod Touch Giveaway!!!

Go over to Renee & Frank's adoption blog, donate $10 and earn an entry to win an iPod!!!

The HORROR!

Ok, what would you have done?

Yesterday, I show up at school to pick up Ethan and there is another woman who just arrived as well. She pulls an infant carrier seat out of the car and I see that the baby inside of it is not strapped in/buckled!!!!! I was on the phone with Kamrin when I saw it and I just couldn't believe my eyes! This woman was walking more like the baby was a nuisance, it made my blood boil.

So, she goes into school and gets her child. She also had a, I'm guessing, 2 year old with her. She swatted him into the car and this is when I notice that he does not have a car seat! The woman proceeded to throw the baby seat into the backseat and sped off. I wanted to get a plate number so I could call the police, but she left too quickly for me to do that. I could have said something and I didn't. Would you have? I have felt bad about this since yesterday. What if something happened to those babies? To me, it was the same as letting a drunk person drive home because it's not your business. What if that drunk person injured/killed someone else because you didn't speak up?

Oh, the horror.

Life With My Special Ks: Ryan needs a home!

Life With My Special Ks: Ryan needs a home!

Recent Life in Pictures

My friend, Paula, was home for a visit from Louisiana over Labor Day weekend. We celebrated Parks' 2nd birthday a little early! MISS YOU PAULA!!!


Saw the Mystery Machine in a restaurant parking lot. The cardboard notes in the windows say, "If you take a picture, please leave a tip". And, where exactly was I supposed to leave a tip?


Saturday was Delaney's first soccer game. SO cute!!! I love watching the little ones play!


Delaney and her Daddy, Chris, after the game! We missed Theresa and Madison because they were at a Williams Syndrome picnic in Raleigh.


Auntie Boo and her little soccer player


Daddy teaching Ethan how to kick the ball. Can you say, Awwwwwww??? ;)


More kicking. I have a video too... :)







I braided Hope's hair today. She is incredibly awesome to sit through it for being 19 months old! I love her little curl ponytail- which is natural, I didn't curl it. I think it turned out pretty cute!
****************************************************

That catches me up to today, I am pretty sure.

Tooth Pics

I miss you.

Yes, that is an aerial shot of Mariposa. I miss you.


PB = Home Always. I miss you.


Mammoth Pooths = Pure camping happiness. I miss you.


More MP. I really miss you.


Merced River = Refreshing Beauty. I miss you.



Merced River Rapids = Sound of home. I miss you.



Hume Lake = Where God entered my life. I miss you.
************************************************

You could say I am homesick. I miss the comforts of home, I miss my family, I miss my friends. I just miss.