Speak for Someone Who Can't

Tonight a newborn baby boy with Down syndrome is fighting for his life in Arkansas Children's Hospital. He was born a twin and the adoptive parents chose only to take the baby without Ds. The adoption agency put a DNR (do not resuscitate) order on this baby.There are families who want to adopt this baby but we must get Governor Beebe to lift the DNR order so this baby lives long enough to unite with his forever family.


E-mail the governor.
http://governor.arkansas.gov/contact/index.php


Please feel free to use any part of my e-mail as your own.


My e-mail:
Dear Governor Beebe,
It has been brought to my attention that there is a child in an Arkansas hospital that was born with Down syndrome.  He was a twin and his adoptive parents decided to take his healthy sibling and leave him.  The adoption agency put a DNR order on him and it can only be lifted by you.


I am the parent of an amazing 14 month old who has Down syndrome.  He is healthy and vibrant and I know he will be a productive member of society someday.  Please give this precious life a chance.  He may hold answers to the cure for Alzeimers, heart disease, or something else.  If nothing else he will make a difference in the life of a family who very much wants to adopt him.


Just because the family he was originally meant to be with didn't want him doesn't mean there aren't others out there.  There are.  As a member of several Down syndrome communities I have seen an outreach in the past 24 hours.  Please, Governor, please lift the DNR order.


Sincerely,
Amy Green
Proud parent of a child with Down syndrome.

A Letter to Kheaven (@13 Months)

Grab This Button

Dear Kheaven,
You're AMAZING!  Your smile and your laugh light up the world...  not just my world, but THE world.  You are strong and fast and sooo curious!  I love how you mimic the things I say and the faces I make.  I love the silly noises you find on your own.  I love that you are so ticklish that when I pick you up you laugh.  I love that having you in my life has made me grateful for more than I used to be.


Kheaven, I believe that you are capable of whatever you put your mind to!  You have been surprising me since the day you were born and I know that you will continue to surprise me.  I hope that I will always give you room to grow and learn.  I hope that I won't expect more than you can give, pressure you in any unhealthy ways, or make you feel like you're not right where you should be.  I hope that we are able to communicate our wants and needs with each other calmly and that I will truly hear the things you want/need.


I thank God every day for you.  You are one of my most treasured blessings.♥

Grab This Button

Something you may not know, in other parts of the world children with Ds are put in institutions if they are not adopted by the age of five.  There are people trying to adopt these precious children, and if you find it in your heart, you can help.

http://www.reecesrainbow.org/sponsorsader.html
http://thenewfaceofdowns.org/adoption/

Both links will bring you to a page where you can make a donation.  No amount is too small.  These children deserve a chance.♥

Sword fight!

Grab This Button

If you have another/other kids and are expecting or have already had a child with Ds...  Don't worry, they'll be accepted and loved just the same!

♥Love it!♥

A Memory

Grab This Button

Kheaven rolled over back to front for the first time a few days before his six month birthday.

We were visiting WI at the time.

These pix, courtesy of my mom, are not of his first time rolling over, but it was the day after.

TADA!

Grab This Button

“A funny phenomenon occurs when you have a child with Down Syndrome.
After falling in love with your baby’s beautiful physical features
especially those slightly slanting, almond-shaped eyes,
you feel an almost instant kinship and affection for other children with Down Syndrome.
Families with a loved one with Down Syndrome share a common bond
that’s difficult to describe.♥" 

I don't know why, but the statement above is true for me. 

:)

Another Flashback

Grab This Button

-This was written mid-October 2009.-

"There should be no more hushed tones, somber faces or sorrowful apologies. The news of Down syndrome ought to be delivered with smiles, congratulations, a hearty slap on the back and a look of envy from every doctor in the world."

Jill kocian

I remember the day my doctor asked if I wanted the Triple Screen Test done.  I said, “No, because it won’t matter anyway, and I don’t want to stress out for the possibility of having something be wrong, as I will not have an amnio done regardless.”  


Fast forward to the day my family welcomed our precious Kheaven Zane into the world, September 21.  I had been in labor for roughly two weeks and finally my body decided to keep progressing.  My J dropped me off at the hospital and went home to get some more rest with the other two kiddos in our bunch.  I made a few phone calls, and waited to see if this was in fact the day, as I had been in and out of the hospital for the previous two weeks.


It was the day! Six hours after being admitted to the hospital I gave birth to a beautiful 6lb 8oz boy with a head full of hair!  My child, and hair!  It just didn’t make sense, I knew something must be wrong!  (Just kidding.)


I cried harder when Kheaven was born than with either of my other children.  I conceived him a couple of months after a previous miscarriage, had been worried about miscarrying him in the beginning and I deeply wanted another child.  It wasn’t an easy pregnancy, but mine never were.  There weren’t any complications other than light spotting in the beginning though.


About two hours after I had Kheaven the doctor came in all befuddled.  *My poor doctor.  He mentioned that he noticed some of the soft markers for DS and that he would have another pediatrician come  and take a look at him.  He was all nervous and apologizing, and I was so confused…  No tests had been done yet, and every soft marker he mentioned was a feature on my partner or myself.  Cute little ears with kinks…  wide set, almond shaped eyes…  a little gap between his big toe and the rest of his toes.  The only thing that was of any concern to me or my partner was this cute little roll on his neck.


Well, I told the doctor not to worry, and that everything would be fine, until we had the test done there was no cause for alarm, and even after that Kheaven was still perfect.


Ten days later I receive a voicemail, from my doctor…  


A chill went down my spine and it was my first instinct to run the bathroom and vomit.  Although only four days earlier the doctor was thinking he had ordered the chromosomal test for nothing after looking Kheaven over when he was less swollen from birth the results came back positive for T21.


Doc asked if I was okay and if I had any questions…  Questions…  Um, YES I had questions, though at the time I had NO idea what they were.  He gave me the phone number of a college mate who also had a child with DS and said to call him as soon as I could, and he would be able to answer questions for me.


Even though I couldn’t quite wrap my mind around anything, two hours later I called the man and talked to him a little bit about everything.  I had missed that he had a daughter with DS from the convo with my doctor, I’m sure I missed a bit from that convo.  I cried for a few hours after getting the news, but eventually the tears subsided.


The next few days I cried myself to sleep, but during the day I was strong for myself, my family, my friends, and of course my two other children.  I didn’t know why I was crying so much anyway.  I knew I wanted my baby, knew I loved him more than anything along with my other two children.  Knew I was blessed just to have him when I thought I may not be able to have anymore kids.


Eventually I figured out I wasn’t crying because of the diagnosis.  I was crying because if anyone tells you your child is at risk for a number of problems, that they may face ridicule and more challenges than most people will ever have to face it’s a little disconcerting.


I joined online forums, found blogs, and kept in touch with my first contacts and kept reading everything I could…  I’m still reading.  I love my son so much and want to give him every opportunity to be the best he can be.  Everyone struggles somewhere in their lives, it’s just part of life.


Kheaven is very healthy as of now, he nurses well, lifts his head and even rolled over a few days ago.  He’s already amazing me, and I only hope for more.  He’s my Handsome beloved, gift from God and I will NOT take him for granted.

*Some people may think my doctor's reaction was not appropriate, that maybe it would have scared/upset me more because he seemed perturbed by the news.  I believe he responded that way because he had been my doctor through my miscarriage and new how much I loved and was excited for Kheaven.  I do hope the experiences he had with my family and the way we responded will encourage him in the future to not be so upset when delivering the new of a possible/positive diagnosis for Down syndrome though.

"Those who do not run away from our pains but touch them with compassion bring healing and new strength," Henri Nouwen observes. "If you will risk sitting in the solitude your heart to reflect on your story, then Jesus will meet you there. He will lead you along a path that restores your true self."

Looking Back

Grab This Button

Found some journaling I did a while back and thought I'd share.  Ten whole months ago.  Some things have changed and some are the same.  It's what I was feeling then.

1/6/10
At work a man came up and asked where to find ear drops.  He was shorter than average.  He had a jolly looking plumpness to him.  I couldn’t help but notice his almond shaped eyes, and the way he sounded when he spoke.   I knew  he had Down syndrome.  Only the second person with Ds for me to encounter at work.  I wanted to get out from behind the counter and hug him… lol…  oy.  I did abandon the customer I was already engaged with to help this jolly looking man.  I was completely distracted, hoping someone would help him find what he needed, and I was so happy when he decided to check out and came back through my line!  I probably could have talked to him all day.  Time stood still as I enjoyed and analyzed him.  He said he was about to head out to see the Globetrotters.  I was jealous.  I asked if he was going with on a bus, or with a group of friends, and he said, “No, I’m driving, I have to get back for work tomorrow.”  I was surprised, although I shouldn’t have been.  The transaction went to fast.  I still had too many questions.  I badgered the carryout Julie, she knew him, I wanted to know how old he was, what his job was… and more.  He looked older, and I wondered how old.  I had just read a few days prior the world record holder for someone with DS was 80, but before that it was 68.  This man looked in his 50’s.

I felt a little bad.  Why do I want to hug strangers?  I wouldn’t expect a customer without Ds to hug me, although some have…  but I have yearned for hugs from people with Ds when I have encountered them.  Maybe it’s because of the first lady I met with Down syndrome, Tammy.  We met in the grocery store.  I hardly remember having a hug that good ever.  It was perfect.  Or maybe those hugs make me feel like it’s going to be okay.  I like to have a tough exterior.  I KNOW everything is going to be okay.  Things are great now, but there’s still a stigma about the situation that sometimes it’s hard to shake.  In reality, everything is fine, but in “normal world” I should have issues…  Or not, but I heard from so many people since the beginning that I was “doing so well.”  I wondered, um, should I not be?  I mean, what’s wrong?

*I saw Tammy again, I excited said hi and went directly to her for a hug.  I don’t know her, but I love her.  I love her hugs too.

1/10/10
I read a comment beneath one of my friends pictures.  She was complaining about the way she looked, another friend tried to build her up by cutting down her brother…  Then my friend commented back, “At least I don’t look mentally retarded like him.”
Do “mentally retarded” people not look good?  I’m confused.  My son is gorgeous.  I was told at a conference about Ds, given by someone who has a son with and is a researcher of Ds that “everyone with Ds has some form of mental or physical retardation.”
I know my friend wasn’t trying to offend me or anyone else, but it stung.  It was my first encounter with this feeling.

Speaking of feelings…
I don’t like when people say “They’re (meaning people with Ds) the happiest people.”  --”They’re”--
Ick…  my son is an individual.
I don’t like that my ECSD teacher refers to people with Ds as Downs…  she does it A LOT.  At first I thought this wouldn’t bother me, ya know, when I was reading everyone else’s blog saying that it did.  People aren’t trying to be offensive… BUT, she’s a teacher, working with kids who have Ds and the parents of those kids.  She should know what is politically correct.

K’s ENT did the same thing, “Oh, I worked with the “Downs” in Oklahoma."
       Really?

Another thing I have a little issue with…  I have observed that while parents of kids with Ds advocate that they want their children treated like anyone else, and they (the parents) emphasize how their children are more like the typical developing child than not, and they emphasize their children are not “Down syndrome,” but they are individuals…  while they do all that it seems like some of them use their child’s diagnosis to get things.  They play the “Ds” card.  Kheaven is only three months… I may do it someday, but I don’t know if I think it’s right or not.
I also saw a status update that got me thinking… “I love someone who has Down syndrome.”  -- I thought about copying and pasting it, after all, I love someone with Ds too!  But I thought about my other updates…  the things I say…  I would NoT say that.  I would just say I love Kheaven.  I would not single out my children, or anyone else with a differentness in a status update… I would not say, I love someone with glasses, although now I think maybe I should to get the update poster thinking… I would not say I love someone who has IBS…  you get my point.  So yes, I do love someone with Ds, but I just love him…  either way.  It's the same with my other kids.

A break from the negativity… Last night I worked with a woman who has a background in early childhood education.  I told her about K having Ds and she was cool…  After I talked for a bit she said, I’ve worked with some kids who have Ds and they’re not the “happy all  the time” people always say they are, they have normal feelings and get upset like anyone else.
            Yep.

Our First Buddy Walk

Grab This Button
 

Our First Buddy Walk

Wichita, KS

10/9/10

^By his sign^

^Walk, walk, walk^

^He wins!^

^Checkin' out the medal some more.^

^With his Dah^

 ^With the God-mom, watchin' sis play^

 ^Ready for more^

^Basketball^ 

 ^Football^

 ^Face Painting^

^Fishing^

 ^More fishing^

 ^The McDonalds and Nayeli^

(Toby Jr. came to live with his "Forever Family" just a couple of months ago!♥)

What a day!

:)

Too much to Bear? I don't think so!

Grab This Button

One of my fellow blogging moms asked the following as a comment to my last blog post, Life is Worth Fighting For:
"I ask this out of complete respect and mean absolutely no disrespect. How do you deal with the future knowing that he may never be able to leave your home or care? What are your plans for him when you and your husband have passed away and he is an adult male w/Ds unable to care for himself? That would be my biggest concern if I were a parent of a child w/Ds. To have to care for them for the rest of their lives- that seems like almost too much to bear." 


So many answers are racing into my mind that it's surprising me.  Therefore, I feel the need to answer in blog form as opposed to a reply e-mail message or comment.  It's a good, natural question.  I faced it the day I found out Kheaven had Ds.  I dealt with almost any negative feeling I could have felt at that time, then I moved on!


I'm going to break the comment apart and try to answer it piece by piece first.




"How do you deal with the future knowing that he may never be able to leave your home or care?"
I'm excited for the future!  I honestly would love to adopt a child with Down syndrome in the future.  I think if Kheaven, or any adopted child I would have, cannot live independently, it would be a joy to live with and care for them rest of my life.  I'm the mom!  Caring is what I do!!


I suppose what scares me is independence.  What will I do if Kheaven is fully capable of caring for himself and wants to move away?!  What will I do if I can't be there for him in a spit second if he needs me?!  How am I going to deal with this for any of my children?!?!  ;)


My dream...  haha...  My dream is that my kids will love me and the environment they grow up in SO much that they will want to live in an attachment to my home or next door to me.  That's a lot for me to ask considering I have not lived in the same state as my family for a year since I graduated.  That's my dream though.  If they don't want to be that close I'm hoping for visits on holidays and the weekends.




"What are your plans for him when you and your husband have passed away and he is an adult male w/Ds unable to care for himself?"
First of all, many adults with Down syndrome are capable of caring for themselves.  They have learning delays, but they still can learn the things anyone else can learn, and they can do the things anyone else can do. They just have to work harder for it.


Who will take care of you when you're older?  Do you know for certain you'll die before you're incapable of caring for yourself.  I don't know that for myself.  My dream...  (Here I go with dreaming again.)  My dream is that if I live a FULL life, and if my children lead FULL lives and are around that one of them will want to care for Kheaven if I'm gone or incapable of it myself.  I do not expect this of them, but it's a dream.  If there is no one there for Kheaven I would think he'll be put in a nursing home/care facility.  I don't imagine he'll have a hard time making friends, especially if it's a facility that specializes in care for people with Ds or other special needs.  He may just have the time of his life there!  :)




"  ...my biggest concern if I were a parent of a child w/Ds. To have to care for them for the rest of their lives- that seems like almost too much to bear." 
It's a morbid thought, but could one of my children, or your children, or anyone's children fall down the stairs and need to be cared for the rest of their life?  Yes...  Could we have a 24 year old get into a tragic car accident and need to be cared for the rest of their life?  Yes.  Would you love your child any less for these reasons?  I wouldn't.  Yes it's more to bear, but it's not too much!




I had a miscarriage before I had Kheaven.  Losing that baby felt like "too much to bear."  Any parent who has lost a child must have had, "too much to bear."


Caring for my child, my son, is a blessing not a burden.♥


We really are MORE ALIKE than different!  It's one of those things that I know from experience that it would be hard to know unless you're in the situation... but that's why parents, why I, do this 31 for 21 blog.  We want others to see that our kids are kids, we are parents.  Life is a little different but we are not worlds apart.

Life is Worth Fighting For

Grab This Button

SoOo...
Blogging about Kheaven's Down syndrome is completely awkward for me.  Really.  :)

I'm doing it though because Google is what I turned to when I had questions about Ds, and from Google I was directed to blogs.  From those blogs I was directed to more and more and more blogs.  From ALL of these blogs I found families that were just like mine but with an extra chromosome.

I'm also doing it because 90-93%(the statistics vary) of women who find out prenatally that they are carrying a child who may have Ds decide to abort.  It hurts my heart and soul to know that they give up the chance to know and love a wonderful little child who, should they believe it or not, they would love as much as any other child they may have.  Life will never be perfect for anyone, we are never given guarantees.  You can have a baby with Ds who will be bright, healthy, and happy.  You can have a typically developing child who has a world of "problems."  You just never know.

I hope that by looking at and reading about my son, and any other child you find from bloggers that you would just give your baby a chance if you're faced with that decision.

♥He/She is SO worth it.♥

Up, Up, and Away!

Grab This Button

Kheaven started cruising along furniture yesterday, and today he climbed all the way up on the couch!

People with, and without, Down syndrome can often surprise you!

♥We're more alike than different.♥

~Brotherly/Sisterly Love~

Grab This Button

While having a special needs sib presents challenges, it also comes with opportunities. Kids who grow up with a sibling with special health or developmental needs may have more of a chance to develop many good qualities, including:

• patience
• kindness and supportiveness
• acceptance of differences
• compassion and helpfulness
• empathy for others and insight into coping with challenges
• dependability and loyalty that may come from standing up for their brother or sister.

The above info was taken from The University of Michigan Health System Website.

I Never Knew...

Grab This Button

Before having Kheaven the idea of having a child with "special needs" scared me.  I didn't know if I'd be good enough.  I thought I'd have to spread myself thin.  I thought it would be a burden.

It's not a burden.  At least, it's not anymore of a "burden" than caring for any other child.  I have the same hopes and fears for all of my children.

I hope that I can raise them all in an environment where they can become the best them possible!

Having a child with "special needs" has blessed my life in that I am grateful for every moment, from dirty diapers to milestones.  I feel like my life has been tremendously enhanced.  It's so weird that I used to fear the opposite.♥

We're All Different, Doesn't That Make Us the Same?

Grab This Button

 Down syndrome was named after the person who first documented that he recognized the characteristics associated with the syndrome.  Many parents of children with Ds believe it should be called "Up" syndrome instead.  ;-)

...

...

...

However, just because our babies/children are often smiley does not mean they are ALWAYS happy.  

People with Ds have a wide range of emotions, just like anyone else!

Health Stuff

Grab This Button

Kheaven had an appointment with a pediatric neurologist last Thursday.  He's had some head shaking since about four months of age.  Sometimes it seems this is directly related to his Nystagmus.(wiggly eyes)  It has never interfered with how he does things, at not to my knowledge.  He had an EEG done a while back but the results came back that it wasn't seizure related.  Because the head shaking has changed from shaking no, to nodding yes, to wobbling like a bobble head they decided to do another EEG.  It also came back negative for seizures.  So, thankfully, we don't need seizure medication.  I have read that it can take a typically vibrant child and sort of make them zone out.


Anyway, since it's not related to seizures and since he has Nystagmus the neurologist gave me the following scenarios...
*It's a tick and nothing more.
*It's "Spasmus Nutans" which can also just be a tick that goes away by about age three.
*It's "Spasmus Nutans" caused by a cyst or tumor in the mid-line of his brain.


I'm not so excited about that last scenario, though going into the appointment I knew the reason we were getting the shaking checked up on is because it can be a sign of a tumor.


The plan is, Kheaven is going to have an MRI done on his brain.  Since he's a little, wiggly baby he needs to be sedated for it.  After the MRI we'll have another appointment, the same day, with the neurologist and he'll tell me what's going on.

I am praying for the best.  I hope that anyone reading this will say a prayer as well.