National Adoption Month

"Orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they're not real before you hold them in your arms. But once you do, everything changes.”
From the book Radical by David Platt

 Since November is National Adoption Awareness Month, I thought I'd tell you about some orphans I know.  I won't tell you about Ansley and Turner because they no longer are orphans.  There are more.  Millions more who are orphans.  Some by social reasons.  Some, true orphans who have no parents living.  No matter the reasons for their circumstance, the reality is THEY did nothing to deserve their status as ORPHAN.  It was thrust upon them and something NONE of them want.  

This is Tamirat.  

The tallish one with the head dress on.  He's celebrating the Epiphany during Ethiopian Christmas.  He became an orphan when he was 11 years old.  His Mom died leaving him and sister and a brother without a parent.  His sister was younger and adopted into an Italian family.  His brother was older and joined the Army. So he was ALONE.  At the age of 11, he went to live in an orphanage by the name of  Kolfe.   Kolfe was better than living on the street.  However, Kolfe is an old war prison, many decades old.  Until recently, many windows were busted out and bathrooms were in disrepair.  He is 20ish now.  He does not know  his actual age but he's guesses.  He had NO ONE to help usher him into manhood. The boys mostly just raised themselves in a very Peter Pan sort of way.  He did the best he could and has turned into a pretty good guy from what I know.  I am hoping to meet him some day.

This is Silas. He had the misfortune to be born in a country the limits the number of children allowed in a family.  I don't know much about him, except what I've read on Reece's Rainbow.  I just know I like the spunky face and I want him to find a family to love  and accept him.  

This is Andrew.  He had the misfortune to be born in a region who places NO value on kids who have any perceived imperfection.   This happens a lot in Eastern Europe.  He, too, deserves a family.

So, in honor of National Adoption Awareness Month, I want you to know some names.  See some faces.  Not just say, "I'm sorry" or "I'll say a prayer" but REALLY see them as human beings worthy of life and love and everything we all want.  I could put you in contact with some blogs/stories that let you see what happens to these children.  It's not pretty.  But it's enough that you know their faces.  You know their names.  It's enough that you open your heart and mind and become involved.  It's enough that you don't ignore them.

 

 

Happy Halloween Yall (2011)

The kids (big and small) love this holiday.  Dressing up!  Candy!   Doesn't get any better.

This year we took them to our local grocery first.   They had several stations set up for trick or treating around the store.  Of course, everyone knew Sawyer.  So that was a bonus! 

Then we went to our neighborhood party and had pizza. 

Now Sawyer and I are handing out candy while Randy is taking the other 3 trick or treating.  (Randy will only quit when he cannot make the kids walk any more...just saying)

Judson cannot do the split fingers-Live Long and Prosper, but he tries.  This is his 3rd??? year as a Star Trek character.  Not that he really is much of a trekky.  More like he doesn't like scary costumes and doesn't want baby costumes anymore.  So by default, Star Trek.  Sawyer wanted to be  a super hero. (If you have a cape, you're a super hero)   Ansley wanted to be a frog princess.  Turner kept changing his mind so he got 'stuck' with Superman.  Now to get them down from their sugar high.

We Celebrate

Dear Sawyer

We celebrated your birthday today.  We most generally celebrate birthdays as a family.  No big parties like some kids.  That's just the way Mom has always done it.  Hope you don't mind.

Did you know that you have been in a baby swing forever!  Mom and Dad decided it was time for a new swing for our big man.  So that is what you got for your birthday.  A new swing.  Here you are trying out the new swing!

Your siblings came out to celebrate too.  Yes, Judson was doing his homework outside.  It was too pretty to work inside!

I hope you enjoyed your birthday celebration today.  You came out of speech class today wearing a crown that said "Happy Birthday, King Sawyer".  Very appropriate. 

It's been a wonderful 7 years Saw-man.  You make my heart soar each and every day. 

Love,
Mom

Down Syndrome Awareness Month-Birthday

Dear Sawyer,

You are ready to turn 7 soon.  How better to mark this birthday than to lose your first tooth!!!!

It's the one on the bottom.  (The gap between your two front top teeth make it look like you've lost 2 teeth but you only lost 1.)

The two things that remain constant as I look back over the last 7 years are:  Your imagination and your sense of humor.

You have the most vivid imagination.  You love to reenact movies you've seen.  Whenever you come into a room with some dress up clothes on, I just ask "Who are you?".  You tell me and then we go into your story.  Sometimes you are a 'father' dressed in my old robe and a ratty blue fuzzy hat.  Sometimes you are a wicked queen.  I know this because of your evil laugh.  Sometimes you are the huntsman come to save Snow White.  That is when you wear a cape (which you call a TAPE) and have a sword.  Every day it's something new and fun. 

Your sense of humor cracks me up all the time.  Like the time you just watched Hook and we sat down to eat dinner.  You asked if you could say grace.  Silly me thought you wanted to say the blessing because some days you do volunteer to do that.  I said, 'sure'.  So you bowed your head, clasped your hands and yelled "GRACE" and then proceeded  to tear into your food.  Just like the kid on Hook did it!  We still laugh at that one. 

You are an amazing kid.  I look forward to each new day and each new adventure you lead us on.

Love,
Mom

Awareness: Math

Dear Sawyer,

One of the things that you enjoy is numbers.  You seem to really like it and are very proud when you learn something new.  Now while some concepts are harder than others (Generalizations especially), you are working very hard to learn your addition.  There are some things I want to get for you that others have had success using.  For now we are muddling through pretty good on our own. 

Here you are doing your 0's!   We are working on your 1's too. 

Love you, Saw-man!

Awareness: Thankful

Dear Sawyer,

Today, you wore.me.out.

Thankfully, days like today are rare.

Usually when there are days like this, your siblings seem to sense that Mom is at her wits end and they act very good.  Today, was one of those days. 

One thing I ALWAYS do on days like today,  THANK GOD. ( I do that everyday but on days like today, I am super thankful)  Because my dear son, if it had not been for Him you would not be here to kick Mommy's butt. And a good butt kicking every now and then helps Mommy realize what's important!

Love,
Mom

Awareness through Music

Dear Sawyer,

Here you are with your buddies at Music Therapy.  You and I know how much you love music.  Everyone knows your love for Josh Groban.  It will be our little secret how you love to watch the PBS specials, most especially those involving the 3 Tenors, your buddy Josh and of course, Elvis. 

Anyway, I signed you up for music therapy to see how you'd do.  It is supposed to help you develop good social and behavioral skills along with motor skills.  I'm not sure how much you are gaining from therapy but  I do believe you are enjoying all the new experiences.  Plus, Mom is enjoying speaking with all the moms. 

In this picture, you are sitting by the teacher.  Ah hem, that was done because if you do not sit there, you tend to get up and roam.  The first session (when you were not sitting by your teacher) all I heard was "Sawer, come back".  I don't hear that as much now.  Your new friend Ripsiemae (I don't not how to spell her name.  She is Armenian.)  is sitting beside you along with your buddy Daniel beside her.  Your old friend Lexi is the class also along with 2 new friends, Sarah and Emlyn. 

Who knows?  Maybe we'll do it again. 

Love, Mom

Down syndrome Awareness-Reading

Dear Sawyer,

You know, one of the reasons we took you out of public school was they did not believe in you.  It is very sad but that is the truth.  Now they didn't come out and say it in those words but that is exactly what they meant.   They wanted to put you in a moderately delayed class.  Mommy and Daddy did not like that option.  We wanted you to repeat kindergarten because we thought it would allow you to mature and have more time to get the basics down.  The other IEP team members would not allow it.  They said, "we have found holding children back does not help them but rather makes them more vulnerable to jokes, etc".  REALLY?  And how many children (before teaching Sawyer) have you had in your class who had Down syndrome?   Their answer, "ZERO".  On more than one occasion we reiterated that you were learning at home and all it took was some one on one help and lots of repetition.  (Sawyer, that equates to money and money is something they do not have in the public school system)  There were so many things we could have said/done like hiring an advocate to help us get what we wanted.  BUT in the end, we decided it would not be enough.  Even if they let you repeat kindergarten, what we really wanted was to give you a chance to go as far as you could academically.  We knew public school would not be in your best interest.  You see, our county is very far behind in their understanding of children like you.  Their understanding is so very dated.   We know different, don't we Saw-man?  You are very capable.  You can read.  You can do the things other kids can do.  It sometimes takes you longer to get there but you do get there and that is what counts.  So, sit back and enjoy some of  your reading.  You, my dear son, are amazing!  (and sometimes a wee bit silly)

 Be sure to scroll down to the bottom and pause the music!

Love,
Mom

Down Syndrome Awareness-Just like everyone else

Dear Sawyer,


I think one thing people assume (incorrectly) is that you cannot do things other children can do.  That you do not feel the same emotions that other kids feel.  That you do not want what other children want.

Boy, are they wrong.  You do want what other kids want.  You want to have friends like everyone else.  You want to be included in things.  Your feelings get hurt like everyone else.  Some people get that.  Some don't.

One group that truly understands this is our local Down syndrome parents group.  It's a wonderful group and I so enjoy going to things they do. 

Last week, we went to one of their events.  It was a party at one of the jumpy places.  You so love jumpy places.  You were a wild man!  (in a good way)  You had the best time! (as did Judson and Ansley)  Here are a few pics I thought you'd like to see. 

Everyone was amazed that you sat still long enough for face paint.  To be honest, so was I.  But you wanted it very badly.  So, you did it!!!!   You got down off that chair and went around to everyone and started growling and trying to scare them.  They were scared!!!!  

Then you wanted a sword.  You started a trend.  After that, everyone wanted a sword. THEN all the little boys were sword fighting.  It was very cool!

My advice to you, Sawyer is:  Don't be held back by those who have no clue.  If you want something, go for it.  Also, don't settle for the bar that is set too low.  Keep raising the bar and keep climbing.   You can and will go places.  You prove it everyday.  And for those who do  not include you, keep moving forward. Most generally you will win them over. You  win folks over each and every day.  For those who cannot see it, their loss.  Don't ever let them stop you from growing and living life to its fullest.

Love,
Mom

Down Syndrome Awareness, Part whatever???

Dear Sawyer,

Once you had recovered from your heart surgery, we started the process to adopt Ansley.  We had put it on hold during the time you were sick but we always planned on adopting at least 1 child.  (Turns out it was 2)

So many folks asked, don't you think you have enough on your plate?  Should you be adding another child to your family?    Thing is, we realized we had worked around the clock to keep you alive and make you better.  We had so much more energy and time than we ever thought possible. (not to mention, LOVE and DESIRE for more children)  So many nay-sayers.  Family!  Friends!  Complete Strangers!  So many had opinions.  Not that we asked.  Still folks seemed to think it their duty to say, "But you have Sawyer.  Don't you think that is enough?".   Or the great, "I sure couldn't do what you're doing"  (To be honest, there are those who still think we can't do it.  Even though we are, each and every day.  All you can do Sawyer is say, "Nuts to them!"  And move on)  But I digress....

When we first got Ansley home, we carried both you and her in a double stroller.  EVERY.TIME.  we had you out, we would get at least one comment to the effect, "Are they twins?".  It never ceased to amaze me.  I would just say, "Nope. They are 3 months apart."  Then I'd walk away and leave them with their mouths hanging open.

You have a unique relationship with Ansley.  You love to play pretend with her.  You always make her  the Princess!  She loves that.  You love her.  AND the funniest thing is, she cannot work her girly-powers on you.  She can make her other 2 brothers so angry with her womanly-wiles.  Not you.  You are immune.  Let me tell you, that frustrates her severely.  She can use the line: "I won't be your friend" with her other brothers and they cave.  Every Time.  Not you.  You ignore every tactic she has in her repertoire. Drives her crazy.  It's quite funny to watch. 

She likes to take care of you.  You let her sometimes and then totally ignore her other times.  I pair you up with Ansley anytime we go somewhere.  Because I know there will be no nonsense.    Whereas, if I pair you up with Judson the two of you will be wrestling on the floor.  (doesn't matter where we are)  If I pair you up with Turner, you drive him crazy trying to touch his lips or hair.  (Then he whines.  Drives Mom crazy)  Ansley won't allow such things.  She'll pinch you or flat out hit you.  Since you don't like that, you don't pull any of your stunts with her.  I guess you could say, each of you has the others number.  It works.

There you are, Sawyer.  The story of you and your sister.  My wish is, as you and Ansley grow older, your relationship will grow closer and deeper.

Love,
Mom

October-Ds Awareness...The Surgery

Dear Sawyer,

Sorry for the delay but here is the story of your heart surgery.

Let me refresh your memory from the last story.  You were home.  Dad and I took care of you around the clock.  Luckily, you stayed healthy.  In fact, you were getting bigger and stronger every day.  We took you for monthly heart checkups.  Mostly to our favorite cardiologist, Dr. S.  If he was not available, we made sure to go to our other favorite cardiologist, Dr. R.  Each time, they'd tell us how your pressures were going down.  It was amazing!

Then one day, Dr. S heard something new in your heart.  The blood was flowing differently.  The pressure had gone down so much, it was causing a different heart problem.  They were going to need to go in and fix your heart defect.  BUT....there was to be a problem.  You see, CHOA is a teaching hospital connected to a medical school.  So things are done by committee there.  They  were going to have to present our case to the committee and see what the committee thought.   We already knew some of the docs on the committee would probably vote against it. So we were a bit worried.

We took you for a new heart cath.  Dr R did it.  He came out and said he thought you were a good candidate for surgery.  When we told him there had been concern about the surgery, he said that he knew of at least one surgeon he could get to do the surgery.  (Do you see why we love him so much!)  As a side note Saw-man, Dr R is now the head of the CICU(NICU) unit you stayed in.  Isn't that awesome?  So much better than the sour-puss lady who was so condescending that was head of the unit when you were there!

Finally, the surgery was scheduled.  We got to pick the surgeon.  We picked Dr. K.  (Now all the surgeons are Dr K but our Dr K is very special)  When I told the scheduling department who we wanted, the lady was so pleased.  She said, "Oh, you picked a very great surgeon!"

So as time approached for new surgery, they told us to let them know if you were exposed to chicken pox because they'd have to reschedule surgery.  They would also have to reschedule if you had a fever.  So we kept our fingers crossed.  Then right before surgery, they had to reschedule due to issues on their end.  By that time, Mom had worked herself into a  knot.  (back issues, tummy issues...all due to worry)  All that wasted worry.  Finally, a week or two or three later we got you scheduled again.   Again, Mom was a knot of worry.

Taking you in and handing you over to the docs on that day was THE SINGLE HARDEST THING I've ever done.  It was scary.  Dad and Pop were there too while Nana stayed at home with Judson.  We waited ALL DAY to hear word.  FINALLY, the surgeon came out.  What an awesome man.  So meek and mild but so good at what he does and he can make a stand when he needs to.  He said you came through the surgery like a champ.  In fact, once the heart was fixed your pressures came back to within normal.  This is where it gets funny. The pulmonologist (remember the one we didn't like) told the surgeon you should be kept on your experimental meds, just in case.  The surgeon told him, "Screw it.  There was no need.".  LOVE HIM! And you never went back on that med again.

You stayed in the hospital less than 1 week.  Over the next few weeks, we weaned you off all meds including oxygen. (And Oxygen Man came and picked up all the O2 equipment/tanks and we said, Don't take offense but we hope we never see you in a professional sense again.  And we have not!!) One day, you pulled that feeding tube out of your nose and I said, "No more.  You will eat by mouth and that's it"  And you did!!! 

From that day forward, you have been going like gang busters.  Over the next few weeks, I'll post all the great things you have done and are doing.  I stand in awe of your accomplishments.  I don't know why.   You've been proving all the docs/experts WRONG since the day you were born.  Nothing should surprise me anymore. 

I want you to know, as well as others, that there is NOTHING you cannot do.  It may take you longer, it may not.  BUT you can do it.  I fully believe that.


Love,
Mom

October-Down Syndrome Awareness (Part 3)

Dear Sawyer,

You're home!!!

This is your first Christmas!!!  

We were so happy to get you home.  Mom and Dad's bedroom was your bedroom.  We had your oxygen machine (then later, the GI-NORMAS oxygen tank) and your feeding/meds in our room.  You had to have meds every three hours around the clock, along with tube feedings.  Dad and I took turns feeding/medicating you. 

I was home with you and Judson most days while Dad went to work.  It wasn't like it is now, with Dad working from home.  Judson was very helpful.  He helped me pump milk. (Oh so helpful was that)   You see, while you could breast feed/bottle feed, the docs said NO.  With the heart defect, your body needed extra calories.  You would tire out before getting enough calories if you ate by mouth.  So we fortified breast milk with baby formula and fed you every three hours through that tube running from your nose to your tummy.  It was funny, right before it was time to feed, I'd always hear you smacking your lips together.  I loved that sound.

Judson was also very helpful with the man who delivered the oxygen to the house.  At first he was scared.  Then, he started getting excited when Oxygen Man would come.  He was two at the time and he could never remember his name.  So he was just Oxygen Man. Oxygen Man let J help which made J feel very special. Let me tell you, those big old oxygen tanks were very hard to get in and out of the bedroom/house.  They were as tall as I am.  They were one of the things that kept your body working and healing so that you could eventually have surgery. 

While we were scared at first, as time went by, we seemed to get in a routine.  I even carried you (along with your mini-oxygen tank) to the mall a few times.  You've always liked going places.  You have always been very alert.  Even the doctors commented on how very alert you were as a tiny little baby.  The only thing holding you back was that nasty PAH and your heart defect. 

By the way, you used to LOVE listening to Josh Groban.  At the hospital, I brought a J.G. cd for the nurses to play for you.  They loved it because it wasn't 'kids songs'(Which is what most parents brought) and it seemed to settle you down.  At home, I'd try different cds but ALWAYS you wanted Josh Groban.  It's funny, when Judson was little and colicky he liked for me to read to him.  Didn't matter, as long as I read.  He preferred chapter books.  The Hobbit comes to mind. With you, it was music.  You loved music.  Mostly stuff like J.G.  Now that you and Judson are getting bigger,  he still loves to read and you still love music. 

Anyway, back to the story.  Dad and I took you to your cardiologist, Dr. S, every month.  We'd both go, along with Judson.  Every time, your PAH seemed to be a bit better.  After a while, we began to realize the doctors at the hospital were not right.  Instead of getting progressively worse, you were getting progressively better!!!   We began to have hope. 

Next time, I'll tell you about your surgery.....

October-Down Syndrome Awareness (Part 2)

Dear Sawyer,

Where was I?   Yes. I remember now.

It was time for you to come into this big amazing world.  We called all the right folks and headed to the hospital.  Actually, Dad headed home while I waited at the hospital.  This was morning and because I had eaten 1/2 of an apple before we went to the doctor, they made me wait til about 6pm before they'd start the c-section.  So I sat around the hospital while Dad got your brother situated with friends until Nana and Pop could get here.  Yes, I know.  MEGA-BORING!

Finally, they started the c-section. It took a bit of tugging to get you out.  Once you came out, you were red and screaming at the top of your lungs.  (our first indicator that you had inherited the STRICKLIN-temper)
You were M-A-D.   You had a white blond fuzz on top of your head.

Here you are the day after you were born:

I cannot remember the exact measurements but I think you weighed a bit over 7 pounds and stretched out to about 19 inches.

Since they knew you had a heart defect, they put you in the NICU immediately after birth.  They kept you in the NICU at the birth hospital until they could move you to CHOA.  At that point, they were not sure of the diagnosis.  They would not let me feed you so I just pumped breast milk and froze it.  They didn't want you to eat in case they needed to do heart surgery.

At some point a doc from CHOA came and did an ECHO and other tests and determined you had a heart defect that needed medicine sent from a central line directly into your heart. 

After 5 or 6 days they transferred you to CHOA where they put you in CICU.  You stayed in CICU for about 4 weeks.  During that time, they finally diagnosed you with a different heart defect.  It was a much simpler defect to fix and didn't require the central line.  That was the good news.   The bad news was you had PAH. (Pulmonary Arterial Hypertension) and they couldn't operate on your heart because of this. About 1 in a million babies have this.  There is no absolute cure.  Most kids live with it, until they don't.  They didn't give us much hope you'd live more than 1 year.  In fact, after telling us this many of the docs quit coming to see you and would not talk to us.

That's okay though.  We had 2 very good cardiologists who took very good care of you.  We also met a pulmonologist.  We didn't like him very much.  He just told us that we could decide for ourselves what we wanted to do as far as care and he'd do it.  He suggested we go to an out of state hospital as they were the best at dealing with PAH.  We said no.  So we researched even more and asked lots more of questions.  Then we decided to put you on a experimental drug to help with the PAH.  (along with some others that the cardiology team added.)

After all that was settled, medical supplies were delivered, I got certified in baby cpr, and I learned to insert a NG-tube thru your nose, into your tummy, THEN we were released to go home. 

I won't bore you, Sawyer, with the details of paperwork and genetic testing.  Let's just say, we had a reputation at that hospital.  It wasn't bad, really.  I think they were just not used to parents who used the internet as much as we did.  Nor were they used to answering the types of questions we asked.  Let me just say, we could read those ECHOs pretty good for amateurs.

That's all for now.   Next time, I'll tell you about Oxygen Man and other fun stuff!

October-Down Syndrome Awareness (Part 1)

It's that time again!!!   Down Syndrome Awareness Month!

So, let's start.  Shall we?

Dear Sawyer,

Let me tell you about your early days.  WOW!   That's all I can say.  It was overwhelming.  Let's start with our first u/s.  You see, docs always want to do an u/s to make sure things are going well and if possible, they might even determine the gender of the baby.  Since I was over 35 and had problems with your brother's pregnancy, the doc decided to send me for a Level II u/s.  (big words for "they sent me to a specialist")  After that first u/s, we knew we were in for a scary ride.  The doctor told us he noticed a possible heart defect and wanted us to come back for yet another u/s.  With each new u/s, we came home with more information,  possible new diagnosis and more markers for  Down syndrome.  They even wanted to do a special test to determine if you had Down syndrome.  Ummm...you may not know this but I don't particularly like needles and most especially don't want one stuck in my tummy.  (which is what their test would have done)  We told them no thank you.  It was not necessary as it would not change the direction we were going.

Let me just say what an amazing man your Dad is and was during this time.  Even when Mom was very emotional with hormones and such, he managed to ask all the right questions.  The most important to me was with each doctor we met, during this time and after you were born, he would ask their opinions on Down syndrome.   You see, we didn't want just any doctor working on you.  So if they had negative opinions on Ds, we made sure we didn't see that doc again.  (believe it or not, there are still many doctors who have dated and just plain WRONG information when it comes to Down syndrome)

So we went for u/s monthly, then bi-weekly and then weekly.  With each possible diagnosis, we'd come home and search the internet for information.  We had a love/hate relationship with the internet.  We found lots of information and were able to ask lots of questions of the doctors.  Sometimes, though that information was very scary.  We researched best hospitals, in case we needed them.  We knew more about heart defects than your average person, that's for sure.  We had wonderful friends and neighbors who put us in touch with the right agencies with information on Down syndrome and services we could expect to get.  We were as prepared as we could be for the day you were born.

Then one day, the docs decided it was your time to see the outside world.  We were ready, or so we thought.