Dallas Feeding Eval

Greetings from room 219 of the Dallas Ronald McDonald House!

Ethan and I left North Carolina yesterday morning, flew to Chicago, and then on to Dallas. Ethan was a wonderful traveler, again. I was excited to see the Tower Garden exhibit in Chicago at the airport- so cool. There was also a children's museum place for kids, which was awesome for Bubs while we waited our three hour layover out.

Once in Dallas, we headed straight to meet a fellow Ds momfriend, Jenna, and her daughter, Lana. It is so fun to be able to meet other parents from cyberworld in real life. Jenna and Lana are awesome and we are so excited to have been able to spend some time with them.

After dinner, Ethan and I headed to the RMcD House. Wow, this house is spectacular. So thankful for it!

So, today was the feeding evaluation at Our Children's House at Baylor. I have been working on this for YEARS. I was all emotional this morning thinking about it.

OCH is super nice. The therapists were all great. And after close to 3 hours the recommendation is for Ethan to be admitted into their inpatient intensive feeding program. There is a day program that is also intense, but the inpatient would be the best-case scenario. Now, we wait for approval. Apparently, there have been some changes to how Baylor can bill out-of-network, so they are trying to work it out. The earliest we would be able to be admitted is May. Pray for approval to be admitted to the program. We've come this far!

That's it. Bubs is napping and we headed to dinner later with friends. We fly out tomorrow early afternoon. Super-fast trip and hopefully worth it. Thanks to all who have been praying! We appreciate it very much!

:::::

A few things: 1). In 'n Out in Texas? Hellz yeah! 2). Driving in Dallas blows. 3). GPS rocks. 4). I am not meant to drive little cars.

Birthdays and Homecomings

February 5, 2008

Four years ago, I was celebrating a very special little girls 8th birthday.  My life had become consumed with caring and loving my dear friend and her beautiful daughter.  We knew that this would be the last earthly birthday she would have and we set out to make it the best possible day.  I think that we succeeded in making her day special, bright and cheerful even as the weather was doom and gloom outside.  We had actually started the birthday festivities the night before and carried them over into her actual birthday.  I remember it all so vividly- from the decorations, to the cake, to the kiss of shared lip gloss...

February 5,  2012

Today, I attended the funeral of one of Ethan's former classmates' 4 year old cousin, Joel.  It was a beautiful service with a loving tribute given by Joel's father, Kevin.  I admired his strength and composure as he spoke of his son who had passed.  He spoke of how after Joel passed away, they gave him a bath.  I, immediately, went back four years to February 10, 2008 after Olivia passed away.  Karen and I gave her a bath, washed her hair, blew her hair out, and got her dressed into her Princess panties and fancy nightgown only a Princess should wear. 

Today, Princess O would have turned 12 years old.  Not a day goes by that she is not on my heart.  I miss her very much.  I find myself at her gravesite and I have never been one to visit cemeteries.  I feel so honored to have been a part of her life, even for a short time.  I know that she had an amazing Heavenly birthday today.  I am sure that she welcomed Joel "home", too, and told him how awesome it is to be pain-free without any more tubes!  :)

I would also like to say THANK YOU to Karen for allowing me to love her daughter the way that I do.

:::

Today is also my dad's birthday.  I hope that it was a wonderful day for him.  The Patriots are playing in the Super Bowl, so if they can pull off a win I know his birthday will be complete.  :)  xoxo

Beautiful Blessing that He Is

A couple of weeks ago, our friend Kayleigh asked if she could take some pictures of Ethan for another school project.  Kayleigh has taken Ethan's pictures before- click HERE & HERE to see.  Ü  

This new session was held on another beautiful day at Bethabara Park.  Miss Kayleigh was still recovering from surgery to repair a collapsed lung!  This young lady amazes me.  Thank you, Kayleigh, for loving our boy!  

Here are a few of what Miss Kayleigh from Arts of Grace Photography captured.  While I wished that Ethan would have smiled more, I love them.  I felt led tonight to attach bible verses to these photos.  What a beautiful blessing Ethan is to us!  ♥

We can make our plans, but the LORD determines our steps. ~Proverbs 16:9 {NLT}

May you be made strong with all the strength that comes from his glorious power, and may you be prepared to endure everything with patience. ~Colossians 1:11

A happy heart makes the face cheerful... ~Proverbs 15:13 {NIV} 

The LORD says, "I will guide you along the best pathway for your life. I will advise you and watch over you. ~Psalm 32:8 {NLT}

:::

Funny story from tonight...  Ethan was playing on the floor when he just decided to get up and come over to give me and Scott a kiss goodnight.  He then decided he was done and marched himself around the corner into his room, closed his door, and went to bed.  Love his independence.  I wish that I had this on video because his expressions and how he just didn't look back was hilarious.  Hey, when you're ready for bed, you're ready for bed...  ; )

Angry

I'm angry.  I've been angry but haven't really acknowledged it openly.  So, here I am to acknowledge publicly that I am ANGRY. 

I am angry over something I had no control over.  Someone close to me aborted recently.  By law, that was her right to do, HOWEVER...

• Do NOT continue to brag about how you want to have a BABY so bad with ___________
• Do NOT say that you would go through any amount of pain to have said BABY
• Do NOT continually have unprotected sex more than bunnies do with _____________ and then act shocked that you got pregnant with a BABY
• Do NOT cry to me about not having money to pay for said BABY
• Do NOT tell me that ________ is never going to get a job to take care of you and said BABY
• Do NOT tell me that you love the BABY and that it was conceived out of love

Do NOT tell me all of these things (and more) and then decide that it's all just too much.

Why do I care so much?  Why am I so angry?  I'll tell you why- it is infuriating that people like this can reproduce and throw the baby away when so many people want babies and can't for one reason or another.  That includes me at this moment.  How badly I want another baby- for me, my husband, but mostly for Ethan.  We have waited for many reasons and I am fearful that it may never happen.  So yeah, I'm angry.  What I would give to be pregnant and here this person knew what she was doing and used abortion as her birth control when her distorted fantasy became reality. 

From day one, she referred to the baby as a BABY.  She flushed her baby down the toilet.  I would have taken care of that baby if given the chance. 


*Really don't want to have any abortion debates.  I understand the whole woman's right to choose deal, but this is personal.  This was no OOPS.  That baby deserved life.

Disrespect....grrr.

Ethan had his semi-annual HEMOC clinic checkup today (everything looks FABULOUS!).  My friend and I picked Ethan up from school and headed over to the hospital.  The hospital turned into a "smoke-free campus" at least a year or so ago.  Signs like this are all over:

And yet, people completely disregard these signs that are posted all over.  I have spoken up on numerous occasion before to people that continue to smoke in the parking deck and surrounding entrances to the hospital.  I have yet to encounter a person that says, "I am sorry, I'll put out my cigarette right now".  I have been ignored, lied to (which was almost comical since I could see the smoke AND smell it- HELLO), and been told to mind my own business.

I'm all for minding my own business if you want to smoke in your own place of residence, but when my child has to walk through your puff of toxins, I will NOT mind my own business and I WILL become the Mama Bear or BITCH (as I was called today) that you do not want to mess with.

So, we park and get out to four or five people standing in a circle- all of them smoking.  I look at them and remind them that the hospital is a smoke-free campus and they shouldn't be smoking.  I always have high hopes for the ideal response as noted above, but today wasn't the day for that again.  

In a nutshell, I was told to "GO ON" and "WHATEVER" because it was none of my business.  Um, yeah- that's when it got ugly.  I was called a bitch (among other things).  My friend had already taken Ethan inside the sliding glass doors, but she could still see/hear everything.  The woman that felt the need to be beyond disrespectful was trying to threaten me by saying, "Go on, OR ELSE".  Or else what?  What are you going to do?  Try and threaten me, honey, it won't work.  She went on to yell that her father was upstairs dying, as if that was going to make their total disregard of the rules ok.  I said (ok, I may have been yelling by this point), "Well, my son has been dying upstairs before and I have had to bring him through this parking deck with pneumonia as someone like you with zero regard to anyone else keeps on smoking."  

Ok, so there may have been some expletives in there.  I admit it.  When someone cannot step away from their own selfishness and it affects my child, I am not a pretty person.  She came closer to me, I got closer to her and I really thought for a moment that I was going to have a physical altercation with this woman.  And, this is just the condensed PG version.  

Security finally came up and oh.so.kindly told the group that they were not allowed to smoke.  They obliged in the end.  I just wish that I had my JACKASS schtick, but it was in the car dangnabbit!

This may not be a big deal to anyone else, but unless you've seen an asthmatic struggle to breathe just from the slightest hint of smoke, or watched your child struggle to breathe from pneumonia, you may never understand why I stand up for this rule to be followed and respected.  It's a freaking hospital for crying out loud...

And, for what it's worth, I really hope that her father is healed or that his passing is peaceful.  I also hope that her outburst was simply a release of stress and that she really isn't the inconsiderate beyotch that I left thinking she was.

My Baby Sister Got Married!

A week ago today, my baby sister Kamrin married her hero.

I was blessed enough to be able to attend thanks to the generosity of my parents.  While I don't live in California any longer, I have watched Kamrin and Kyle's love grow over the past few years from the beginning phone calls, the young love pictures, and just seeing them together during visits here or while in California.  When Kyle proposed, Kamrin called me even though it was late and knew I was in bed because she didn't want me to find out via Facebook the next morning.

Kamrin and I have always been close even with the age difference of 9 years.  We try to talk on the phone every week, if not multiple times per week.  We skype.  We text.  We share.  We LAUGH.  We laugh A LOT.

On Friday, September 16th, 2011 my baby sister married her love.  

I was in charge of my niece, Eryleigh.  She was one of the flower girls and she stayed at with me at my friend Elvira's home the night before.  It was a great bonding time for me and Eryleigh.  She makes me laugh, too.  I had to get her to the wedding venue early so I could begin working on her hair and getting her dressed.  I had done a practice run on her hair the weekend prior, but on the day of the wedding her hair was not cooperating like I wanted.  Eryleigh was a champ and did a fabulous job while Auntie tried to reach for wedding day flower girl perfection.  {For the record, her hair looked cute but far from perfection}

Because I was getting Eryleigh ready at the venue, I was also there as Kamrin was getting ready.  I did my best to stay focused on Eryleigh instead of Kamrin because I couldn't slow down to cry.  Every glance I took, Kamrin became even more beautiful than the previous glance.  I knew that Kyle was going to be in awe of his bride.

The weather was hot that day, but by the time Kamrin walked down that isle everything was perfect.  My Dad held it together, barely.  You could see the tears welling up in his eyes as he was about to give his baby girl away.  Luckily for Kyle, my parents think he's pretty awesome {which he is!}.

The ceremony was short, sweet, and just lovely.  My sister was stunningly radiant and her groom was exceedingly handsome.  I am not sure if I have ever seen such a calm bride in my life. 

The reception was also fabulous.  Great fun, with yummy food (oh.my.gosh...the potatoes!!!), wine, and dancing.  LOTS of dancing!  : )  Of course, I don't think that I want to see the dancing candids that the photographer took!  I'm thinking sweaty and in-motion is not a good look for many!  Haha...

My best friend, Angela, was my date.  She drove up from LA in record time in order to attend the wedding with me.  She was the best date a girl could ask for!  Thank you SO much, Ang, for being there for me when my boys couldn't.  I love you!

No honeymoon for the newlyweds quite yet- maybe a trip in the Spring.  I'm not-so-secretly hoping for a layover in Charlotte.  {Are you listening, Kyle? ; ) }

Dear Kamrin and Kyle,
I am beyond happy for you both!  You have an amazing love for each other and we all can see it.  We all love you and support you.  We will always be there for you whenever you need!  Take Kim's column advice and don't stop kissing.  Be each other's rocks and #1 fan.  Speak one another's love language constantly and keep that love cup filled.  Listen.  Communicate.  Communicate and listen.  Laugh and laugh together.  Never underestimate the "little things".  And, last but not least...visit your sister in NC.  ; )
All my love, always ~ Kristen

 With my beautiful sister before the ceremony

  

Eryleigh as she watched Aunt Kamrin walk down the aisle

 

Daddy about to give his Baby Girl away  {Look at that sparkle in her eye as she looks at her Groom}

My nephew, Kristopher, as ring bearer.  He is so flipping cute!

You may now kiss your bride...

My brother, Kolt and his son, Kristopher...oh, so handsome!!!

The goofy couple as we know them best.  

Congratulations, Mr. & Mrs. Kyle Turner!!!

♥♥♥

SHEP

August 17, 1998 - August 30, 2011

Heartbroken doesn't even cut it

Yes, we knew it was coming.  Yes, we have been keeping him as comfortable as we can.  But, knowing when the right time was to say he's ready was not as easy- until now.  Clarification, it is NOT an easy decision to let go of your beloved pet, but it is easy to make the decision that he shall not be in pain any longer. 

Since "The Talk", we have made sure that Shep has filet mignon and rotisserie chicken for dinner, and the occasional peanut butter snack.  We have watched him in awe knowing that he is really, really sick and not showing us.  You see, Shep is the ultimate people-pleaser.  He was not going to let us know that he was in pain or how bad it really was for him.  He wasn't going to tell us that he was ready for us to let him go.  HE didn't, but his body did.

I came home from the movies last night (The Help, which I may write about later to take some of this pain away) and Scott met me at the door with the "bad news".  He said it was time. 

Shep's left eye is sunken in, the tumor on his bottom is huge and bleeding, he is panting to breathe, and the worst in my mind is that Scott found maggots on him.  :'(  He has a smell that is obviously unpleasant and we know that his body is dying from the inside out. 

I have spent my entire day by his side today, only leaving it to go pick Ethan up from school and to let him outside for a little bit. 

It looked like a storm was getting ready to come in and Shep was getting antsy inside, so I gave him half of an anxiety med and let him go outside before the storm came in and we wouldn't let him back out.  When I went outside to bring him back in, I couldn't find him.  My backyard is not that big and it is fenced so not being able to find him was really freaking me out! 

I ended up finding him stuck down a small hill up against the fence, unable to move.  I may not love my arms, but I love their strength and I am thankful that I was able to lift my pups out of that "ditch" and carry him inside.  I swear, I thought he was dying in my arms before I even got him inside.  He was barely breathing and I lost it.  Ok, I have lost it numerous times since last night, but that really made me lose it. 

Shep is now back to panting for air, laying down on his blanket.  He can't move, most likely because of the anxiety med.  I put some water in his mouth from a syringe and he didn't even move his tongue. 

Ethan was waking up from his nap and I went in and had a little chat with him.  I was crying and told him how sick Shep was and that he was getting ready to go to Doggy Heaven.  Normally, Ethan is fighting to get off of my lap and go run and play, but not today.  He gave me hugs and kisses that just melted my heart.  I am not sure Ethan really knows or comprehends that Shep will be gone soon, but he knew that Mommy's heart is broken.  Sweet boy.

So, Scott and I will take Shep to the vet tomorrow for his dream juice that will take his pain away.  We will then take him to the Pet Crematorium ourselves and then bring him home.  To say we are heartbroken doesn't even scratch the surface.  We know what we are doing is right, but that doesn't make saying goodbye any easier.

Please keep us in your thoughts- especially Scott.  Shep and Scott have an incredible bond.  Shep went to work with Scott every day for close to 10 years.  I am a wreck, but I am not sure I will even compare to the wreck that Scott will be tomorrow.  Thank you for all of the support that we have received via Facebook, text, and/or e-mail.  We appreciate it very much.

PS....I'm not proofreading, so ooops if there are typo's and/or grammatical errors.

"THE TALK"

Wow, it's been a while since I have been here.  Lots has happened in the last two months- we went to California, Ethan turned TEN, our niece {Samantha} got married, Ethan completed the 3rd grade {functional curriculum}, and we are now in the routine of summer.

Before we left for California, Shep was retching really bad and I was very concerned.  I took him to the vet and after x-rays and exam, it was determined that allergies were the culprit of the retching but what was also discovered was that his cancer had spread to his lungs.  :'( 

Shep also had a growth on his booty that wasn't huge, but looked painful.  Well, that tumor has grown and Shep has been having some issues.  He is not eating as much and has had some bleeding.  I will spare the graphic details, but it's really bad.  And, it makes him smell....bad.  Poor thing wants to come in the house more, but he just smells so bad now.  It breaks our hearts.

I took Shep into the vet this morning to see about what we can do about the growth, if anything.  And, in a nutshell, we can opt to have it removed but there is no guarantee that more problems won't arise OR even that he could make it through anesthesia since his lungs are so bad. 

Then, she said it. 

"It's almost time to talk about options.  He's really really sick."

I don't have a timeline, only "he doesn't have much time".  We discussed quality over quanitity, burial or cremation. 

Everyone has told me that we will know and right now, I just don't know and I am not prepared to make that call even though I have known this day was coming since we first learned of his cancer. 

I totally understand why my Mom says "NO MORE PETS" after one passes...this is just too much.

It's just too much some days...

Today being one of them.

First, my car died yesterday.  No warning or anything.  The starter just decided to have a massive heart attack.  That's going to cost over $300.  Nice. 

So, I am already emotional about the money stuff and I go to pick up Ethan from school.  SIDE BAR:  HUGE thanks to our neighbor's for offering their other car to us so I could take Ethan to/from school!  One of Ethan's classmates comes out of school, sees his Momma and runs with elation at the sight of her and excitement that she was there.  Ethan sees me and cries.  He's been doing this for a while because he just doesn't want to leave school.  I know that I should be happy that he doesn't want to leave school, but some days it's just way more than my heart can handle.

Signed,
Broken-Hearted Momma

Doctor Appointments For My Boys

Today was all about doctor appointments for Ethan and Shep.  Ethan had his neurosurgery follow-up and Shep had to see the vet.  One had good news and one had not-so-good news...

Good News:  Ethan is doing GREAT and has all but been discharged.  We only need to return to the neurosurgery clinic if we notice any significant changes.  ☺

Not-So-Good-News:  There is a high probability that Shep's cancer has spread to his lungs.  :'(

I took Shep in today because he has been retching for a few weeks.  It is awful sounding.  He never actually vomits, but oy vey- poor pups seems to try.  I freaked out about bloat or twisted tummy {Hello, anyone see Marley & Me???}. 

After an exam, I agreed that an x-ray was needed.  The good news was that his tummy is perfect.  The bad news was that there was a "suspicious" something near his pancreas.  But, the big not-so-good news is that it was really difficult to see Shep's lungs.  They were very cloudy and the vet even said that it was difficult to hear air flow through his lungs.  While the vet could not confirm that the cancer has spread, Scott and I are fairly confident that this is what's happening.  It doesn't explain the retching, though.  That was still a puzzle and the theory is that he has drainage from allergies {too bad Juice Plus+ for dogs isn't available anymore! ;)} just like us humans have. 

Now what?  We watch his breathing and keep him comfortable.  This is not operable, nor would we put Shep through that.  He is getting up there in age, but he still has quite a bit of pep in his step and he is not telling us that it's "time".  We have put him on some antihistamines hoping that it helps the retching. 

Thanks to my Mom for letting me cry with her when I was freaking out and to Heathe for calming my fears.  xoxo

Heartbroken...

Two months ago, my sister-in-law, Cindy, called me and said that Ashley was graduating from LPN school and she thought it would be an awesome surprise if I could come and surprise her.  While I wanted to, of course, I wasn't quite sure how I would pull it off as I only had a few days to make it happen and they live in Upstate New York.  Well, it was meant to happen because I pulled it off.  From getting Ethan covered to the ultimate surprise to Ashley AND Jennifer.  {I will have to write that post up sometime since it really was a lot of fun :)}

I got to be there when my niece, Ashley, was pinned as a LPN.  Talk about tears filled with pride and joy!  I have loved Cindy's girls from the moment I met them.  I went from Ms. Kristen to Aunt Kristen and loved it.  I have watched the girls grow into beautiful young ladies from the inside out.  I am blessed to be their Aunt and blessed to have shared in this special occasion. 



Ashley called me a few weeks ago and shared with me that I was going to be a Great Aunt.  She was expecting a baby with her boyfriend, Jake.  I love that she felt safe in telling me.  Even though she an adult and 22 years old, she is not married and I am sure lots of "kids" out there would still feel nervous to announce an out-of-wedlock pregnancy, but she knew that she could tell me without judgement.  Unconditional love.

Ashley and Jake- two young adults in love and about to have a baby.

Something went wrong, so very wrong.  For reasons only Jake knows, he took his own life last week.  Ashley is, understandably, crushed.  I am crushed and heartbroken for her.  I just want to wrap my arms around her, hold her, and make this pain go away.  I want her to understand that this was not her fault.  I know that will take time. 

Cindy and Emily (sister) drove with Ash to Kansas City so she could see him and be there for his funeral.  I know that this has to be the most difficult thing that she has ever faced and she is going to need prayers.  Lots of them.  Thank you for offering them up for my sweet Ashley.

Also, please pray for Jake's family.  Jake was about to be a father, but he was already a son, grandson, nephew, Uncle, and brother.  Hearts are broken without understanding. 

Jake will be honored at his funeral tomorrow with full military honors as he was a soldier for our country and served overseas.  May he be have peace.



I never met Jake, but I love him because Ashley loves him and because he is forever part of our family with the new life they created.  My heart is absolutely broken because someone I love is in tremendous heartache and pain.  I just want to take it away...

Happy Mail

Today, I received a letter from my girl, Martha, at the Challenge Farm.  Martha has written me a few letters and I am so bad.  She is always in my thoughts and prayers, but I have slacked on physically writing her.  Her letter today is such a boost. 

*****

♥  Hey mum, how are you doing?  I have missed you so much.  I wish that I could be there but I just thank God for everything that He has done for me.  And I just thank you Mum so much for sacrifice yourself to sponsor me.  I am happy so much that you will not imagine.  ♥  I hope my brother have grown bigger than last year.  I hope one day I will see him with my own two eyes.  I hope even my Dad is doing good, I pray to my God that I will see all of you and I am praying for you to come back at Challenge Farm for me.  I love you so much!  So much Mum.

*****

I love this child so much!  How sweet is it that she refers to me as her Mum?  Or Ethan as her brother?  Or Scott as her Dad?  I just wish I could bring her home with me.  I have faith that I will return to Challenge Farm again one day and hug my sweet Martha and the other kids.  Gosh, I miss Africa.

It's easy...

It's easy to throw a word around to be insulting.

It's easy to hide behind excuses- "I didn't mean it that way", "I don't think Ethan is that"...

It's easy to say "Oops, sorry", and then go about your day without a care in the world...repeatedly.

It's easy to use my son's medical diagnosis- something he has NO control over, as a joke. 

http://www.r-word.org/

Take the pledge.  Take the pledge to spread the word to END the word retard(ed). 

This is not a "you're just too sensitive" or "here comes the PC police" issue.  This is a respect issue.  I ask that you do your part, for Ethan, and all of those with intellectual disabilities.  A person's medical diagnosis should not be the "go to" for a laugh or insult to another.  While you are laughing at your inventive insult, you are hurting me, Ethan, and so many others. 

My friend, Amy, has written the most powerful, eye-opening, and heartfelt post.  Please take a moment to read "Why the word retard isn't funny".  You can also follow Amy's journey here.

This is just a snippet of what we hear all the time.  Nice, right?

When we hear the word "retard" used as an insult, way to demean someone, to feel less than, to laugh at a joke – it is beyond disrespectful. It shows that the user has no compassion, love, or empathy. It shows a lack of education. It shows a lack of being kind. It shows a lack of treating others as you wish to be treated. It shows ignorance. You DO mean Ethan when you use this word so don't use it.

You can do this.  You can make a difference.  You can take the pledge.  You can choose respect over insult.  It really IS an easy thing to do.

Love this!

Way too important not to share! Some just do not know what they are missing! Others are very fortunate! If you're looking for a plan B in this economy, you may want to look at having your own virtual franchise!!!

http://www.juiceplusvirtualfranchise.com/

Ready for a Plan B? 97% of people work a J.O.B = (Just Over Broke). All of them want a M.B.A. = (Massive Bank Account). They are clueless on how to create wealth and be R.I.C.H = (Residual Income Creates Happiness). Continuously surrounding themselves with H.A.T.E.R.S = (Having Anger Towards Everyone Reaching Success). And then wonder why they are P.O.O.R = (Passing Over Opportunity Repeatedly).

{Thanks, Michelle for posting for me to steal!  :) }

Can't afford it?

I was at the grocery store the other day and needed to pick up some fresh fruit. 

I browsed the apple section and glanced at the price.  $1.99/lb.  Ok, so how many apples will that get me?


ONE.  One apple for $1.99 {ok, slightly under since the apple was just under a pound}. 

Juice Plus+ provides the nutrition from 17 vine-ripened fruits, vegetables, and grains for $1.39/day.  That is less than the cost of one apple a day. 

What are you waiting for?

http://www.fillthegap-juiceplus.com/

Choices

Today, I had to make a very difficult choice.  And, after I tell you what choice I had to make, I am sure that you will agree that it would be hard for anybody to choose. 

This morning, I had the pleasure of going to church with my friend Nancy.  Just me and her.  Ethan and Scott stayed home.  Once I got home and had lunch, I either had to tackle the laundry oorrrrrrrrrr grab a pillow and a few blankets, along with my favorite son and head outside onto the hammock for the best time of snuggles and Sunday nap.  SUCH.A.HARD.DECISON.

It was a little cooler today than yesterday, but it made it so that Ethan cuddled up to me really close.  I had my forehead to his and I thought of how peaceful it was to be outside without phone, tv, or internet, and to hear the birds chirping, and to open my eyes to watch the clouds drift by. 

I ended up not sleeping much at all.  I ended up staring at my beautiful son sleep.  I listened to his precious "sleepy" talk and wondered what he was dreaming.  I looked at the peach fuzz on his face as the wind blew across his handsome face.  I watched his long eyelashes flicker as he dreamt.  I watched his body rise and fall with each inhale and exhale of breath.  I watched in amazement of this amazing creation that I brought into this world.

As I reflected upon his complete and total perfection, my heart was sad for all of the uneducated people who would choose to NOT bring a child like Ethan into this world because of fear of the unknown or fear of not being normal or perfect.  He is the most precious gift that Scott and I have to date.  I hope that people who know us or meet us know that. 

So, today I had to make the {obviously} simple choice to let the laundry wait another day in order for me to have one on one time with my boy and all of his perfection.  Gosh, I hope that I have to face that choice again soon.

Inspiration Through Opportunity*

Inspiration Through Opportunity*

By Kristen Faulkner Pfafftown, NC

Nearly eight years ago, our son, Ethan, was born. We had no idea what was in store for us — even before we got the news Ethan has Down syndrome! My husband, Scott, and I chose to focus on our baby and not the fact that he was sporting an extra chromosome. While we appreciated people further along in this journey offering us support, it was overwhelming to hear about what their older kids were doing. We just wanted to love Ethan and enjoy his babyhood...

We immediately enrolled Ethan in Early Intervention (EI). Monthly home visits increased to weekly with constant reassurance that Ethan was “right where we expect him to be.” Not having other children or direct involvement with other children with DS, those words were blissful music.

Ethan will be a superstar and prove everyone wrong about how successful a person with Down syndrome can be!

Time passed and it became obvious Ethan was not where he should be developmentally. We asked for more EI visits, physical, occupational and speech therapy. The news was discouraging with limited therapy options and an hour plus drive to see a private pediatric therapist. Our speech requests were denied since “children with DS don’t talk until they are older than three anyway.” After running in circles trying to get Ethan the necessary services, a door opened… across the country!

Based on his needs, Ethan was accepted into a five-star developmental day preschool program, passing over six children on the waiting list ahead of him. It was heart-wrenching to leave our family, friends and everything familiar to give Ethan the opportunity to catch up in his development in an inclusive preschool with all of his therapists in one setting. We felt we had to take the chance. We were so fortunate to have found such an amazing school.

We were confident Ethan would catch up and prove that children with DS can do anything if given the opportunity!

 Unfortunately, Ethan’s health rapidly declined soon after we arrived in our new home. After four months of continuous infections, antibiotics, fevers and restless nights, a blood test revealed all of Ethan’s blood counts were dangerously low. Not just anemic, but requiring a blood transfusion.

A repeat CBC and a referral to our local children’s hospital confirmed Ethan was about to face the fight of his life — quite literally. Three months shy of his third birthday, Ethan was diagnosed with Acute Lymphoblastic Leukemia (ALL) and underwent surgery to have a port-a-cath placed in his chest to begin chemotherapy treatment.

Over the course of the nearly three-year course of treatment, including daily doses of chemotherapy, Ethan was hospitalized countless times. (The parking deck employees actually thought that I was an employee because they “saw me all the time.”) From blood infections and pneumonia, to an actual Code Blue and induced coma in the PICU due to a bronchoscopy gone terribly wrong, the hospital was our home away from home.

During his treatment we discovered Ethan also had dysphasia and required thickened liquids, severe acid reflux and a B-cell deficiency. These discoveries added to Ethan’s time in the hospital due to aspirate pneumonia from both food being swallowed AND reflux coming back up. We couldn’t focus on therapy. Our main concern was for Ethan to beat his battle with cancer.

When we could finally claim victory over the cancer, I began my own inner battle. I needed to move on to the next challenges…walking…talking…chewing food….

It has been incredibly difficult to watch children younger than Ethan surpass him in their development. To see children — born years after Ethan — walking or communicating leaves emptiness within my husband and me. But, we continued to remind ourselves that chemo and hospitalizations are not a desirable combination on any day, particularly for a child with special needs who developmentally may rapidly regress.

For some reason, Scott and I focused on walking. I think we just wanted him to be up and about with his peers. I figured that if Ethan was running around with other kids, communication would soon follow. The same was true with oral motor skills and eating...if other kids were doing it, so would Ethan. We had to start somewhere; and, for us, that was walking.

A year after finishing treatment, Ethan still did not attempt to walk or do more than minimal weight bearing. Someone told me about a rare neurological condition called Tethered Cord Syndrome (TCS). The more I looked into it, I felt there was a strong possibility that Ethan had TCS. I asked the doctor, a local neurosurgeon, to order an MRI to confirm the diagnosis. He refused, saying TCS “is not Down syndrome-related.” I persisted and finally, nearly a year later, a MRI confirmed Ethan had been born with TCS.

This taught me an important lesson about following instincts. When I have a gut feeling about something regarding Ethan, I pay attention. I urge other parents to do so, too.

Three months ago, a different neurosurgeon performed the surgical repair. The new doctor said there was no doubt Ethan needed the surgery and that it was likely the main cause of his slow growth and difficulty with walking. Since the surgery, we have seen an amazing improvement in Ethan’s walking. He is visibly excited to be up and independent.

Technically, Ethan’s needs classify him as “severe and profound delayed.” This still brings moments of sadness. We remind ourselves that this sweet child of ours has faced more challenges than average. In addition to everything else, Ethan has also been diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), a form of autism.

Because of Ethan’s severe delays, I feared he would never get to know students outside of his classroom, but his neighboring students love Ethan! My son is a little celebrity at school. The kids say “hi” and “bye” to Ethan in his very own ESL (Ethan Sign Language). His fellow students want to help him walk and learn. They want to know Ethan. The kids describe Ethan as sweet, fun, nice, loving, friendly, smart and walking. They see a friend who is a good kid, likes to play, is part of their school family and says "hello" in a special way.

Recently, some of the students wrote letters to Ethan. When I read them, my heart bursts with happiness and pride:

• “When you laugh, it makes me happy.”

• “I love having you in our class.”

• “Ethan, you’re awesome!”

• “You are an intelligent person.”

• “You make a difference in my life.”

• “Every time you come in our classroom, if someone is sad and you give them a smile, then they feel happy again.”

• “I have seen you mad, sad, happy, and glad. I have seen all your feelings. I love being with you.”

• “You’re really not that different than me — you just have harder hair.”

• “After getting to know him, my children grew to love Ethan and realized the beauty of children with special needs.” (from a parent and teacher)

Ethan’s school principal says:

Ethan brings such a great perspective to our daily lives.  He is absolutely the most popular young man in our school! Our students love him for who he is.  They have learned about his struggles and assist him in such a caring and loving way. They do not see him as “different,” they see him as “theirs.” They embrace him and help him learn..and all the while he is helping them learn...he helps us all learn about mutual respect, persistence, consistency, patience, kindness, and genuine happiness. We are better because we know Ethan.

Over the past few years, I have found myself feeling as if I didn’t belong in the DS “club” anymore because of Ethan’s delays. We did not fit the profile of a DS “superstar.” That felt very isolating.

Now, while Ethan may never be the keynote speaker at a podium or a world-class athlete, I know that he is a superstar in his own right. Ethan has already overcome so many obstacles in his life and has inspired so many people. Today, I celebrate my son and his successes, be it nail trimming without a tantrum or that first independent step.

*Reprinted from 2009 by request, original blog reference here.

My sweet boy...

My darling, sweet boy melted my heart this morning.  After I dropped Ethan off at school this morning, I went to Krispy Kreme to get the class some heart-shaped donuts (YUMMO). 

When I got into the class, they were in the middle of circle time.  Ethan turned around and saw me come in.  He gave me a sweet grin- which was precious, but what totally melted my heart was when he looked around his teacher to see me again and he then blew me kisses and signed "hi" without any prompting! 

Functional and appropriate communication.  Freaking LOVE it!!!  ♥

Princess O

Three years ago, Olivia left us.  It is so hard to believe that 3 years has passed.  Not a day goes by that she is not in our thoughts.  There isn't a day that goes by that we don't miss her.  I can actually still smell her hair.  I cannot fully express to anyone how much that precious little girl meant to me or how much I love that child.  I know that Karen knows and I guess that's all that really matters. 

My wish for Karen today is that she feels the breeze upon her cheek as she gets that kiss from her baby directly from the land of happy.

Olivia's Montage

I always sang this to Olivia.  God Bless her, she asked for it over and over again.  Poor Karen had to listen to me sing it over and over again.  LOL.



As always, please keep Karen and Weldon in your thoughts and prayers today.  Thanks.  ♥