Friday, September 30, 2011

31 for 21 - Down Syndrome Awareness Month

October is Down Syndrome Awareness Month and to both celebrate and educate I have committed to blogging every single day of October.  31 days for 21.

I've been reading books and blogs to gather information, stories and inspiration to share every day of October.

Some recent feedback I've received has been how much people have enjoyed learning more about what it means to have Down syndrome.  Those words mean more to me than anything.  If this blog touches just one person who will view people with Down syndrome or even people with any disability or difference with just a little bit more compassion, then we have succeeded.  The goal of 31 for 21?  To shed light where there is darkness.

I hope that both you and I can learn some new information about Down syndrome along this 31 day journey.

If there is a specific or general question you have about Down syndrome-- please leave a comment or email if you would prefer to keep your identity or question anonymous.  I would love to try and answer any and all questions as we go through the month.

Also!  I will be giving away a $10 Starbuck's card every Friday of October to one random person who has commented on the blog each week.

Happy Friday!!!

Tuesday, September 27, 2011

Brothers, Emergencies and Monkey Cupcakes

Brothers.  They had been coexisting quietly during the first year of Joey's life.  He didn't really bug Tommy too much.  That all changed in church last week.  

When Tommy wasn't looking, Joey reached out and grabbed Doggy right out of Tommy's hands.  Game on.

This is just one of Joey's many new emerging tricks.
He is now officially sitting on his own.  Our next steps are learning to get in and out of sitting other than flinging himself straight backwards.  This is why a pillow behind him is usually the safest route.  He has been working so very hard on this skill.  We have been working with our amazing Help Me Grow (aka- Help Me Joe) team and they have been cheering us on and teaching us as we go.  We have also started our new super intense private therapy schedule which includes Speech Therapy, Physical Therapy(Gross Motor Skills), Occupational Therapy (Fine Motor Skills) and Swim Therapy (building muscles!!!).  

Joey is also now officially clapping!  This is incredible for a boy who before his heart surgery would barely raise his hands up above his waist.  The other day we went to a birthday party at Chuck E. Cheese (which Tommy loves although he loathes the actual Chuck E. Cheese character. He told me about a dozen times, "I not talk to that big mouse, Mommy").  I was a little worried that the stimulation, noise and activity might be too much for Joey.  Was I wrong.  He loved it!  He was grabbing onto the joy sticks.  Trying to be a part of the action.  Trying to play the same games his brother was playing.  It was incredible.  He is incredible.  For the briefest moment I wondered if anyone was looking at him and eventually the moment passed.  We spent so much time last year in isolation that I am still not totally used to taking him out and about in every day situations.  On a daily basis I don't see that Joey has Down syndrome.  I just see Joey.  Sometimes when we are out in public I forget that he has it and then I'll catch someone looking at him. what if anyone anywhere looks at him?  He is ridiculously cute, so why wouldn't people look at him?  That's my story and I'm sticking to it.

Joey is officially holding his own bottle as well as his own Born Free sippy cup and is feeding himself his own bottles/cups at every meal!  Another skill he has totally mastered.

I actually had to bribe, yes, bribe, Thomas Henry to participate in these photos.  He is a child who is in a constant state of motion.  In the blink of an eye he will swoop down and spend a little time with Joey.  For these photos, two mini Tootsie Rolls were exchanged and the photo series ended up with poor Joey landing flat on his back after an aggressive hug.  Yikes.

Another emerging skill Joey has been showing off is waving.  Yes-- we think he might be waving at us.  He showed off his new pageantry wave at the Emergency Room last Wednesday night.

I was trying to get the evening pulled together and get both boys to bed.  Tommy was watching Curious George in my room, so I laid Joey on the queen-sized bed we have in his nursery-- I put him smack in the middle.  The spot I thought was surely safe because it is completely in the middle of the bed with a big fluffy, comforter pillowing all around him.  Snug as a bug. . .

I ran over to the bathroom to start the bath water when I heard it.  This sickening, loud and dense "thud".  But then there was silence, so I thought, "Surely that can't be Joey."  I was wrong.  That was Joey.  

He didn't cry.  That's what scared me.  He was on the floor and he was very, very pale.  Too pale for my liking.  Because I wasn't in the room, I had no idea how he had fallen.  Did he land on his back?  On his chest?  On his head?  His chest was my first concern and then his head.  Part of his post heart surgery instructions include no blunt force trauma to his chest/incision area. What if he had landed on his little sternum that was still healing?  

We were down at Children's ER about 10 minutes later as I illegally passed cars on Exchange Street in an effort to get to the ER as fast as possible.  Then I was a hysterical mess of a mom at the front desk.  It was all I could do to get out that he fell off the bed, that he had heart surgery in June.  I hadn't cried this much during his heart surgery up in Michigan.  At least during the stay in the hospital, I could tell myself that I had not done anything to cause him to have to have heart surgery.  The heart issues were "not my fault" in my book.  They had just happened.  This however-- was 100% "my fault".  If this precious child had survived such a wild first year of life and open heart surgery and then he is injured because I let him lie on a bed-- I thought I might die of my own broken heart.  

After I explained to the kind woman at the front desk what had happened, she said, "Are there any other health issues?"  I hesitated.  I never know if I should include that Joey has Down syndrome.  Is it a "health issue".  Yes?  No?  I never know.  I never know if it is obvious.  Finally,  I said, "Yes.  Joey has Down syndrome."  She said, "Get that baby up here!  I need to see him.  My youngest son is 29 and has Down syndrome."  My first smile of the night.  I can't tell you what it is like to be in this "club".  It's instantaneous.  When you meet another parent, there is just this sense of ease.  Relief.  Not needing to explain.  Not needing to put up any pretenses.  The nurses, the doctors-- they were all so kind.  More than one doctor came in to tell me that the same thing had happened to their child.

Joey got a chest x-ray to look at the wires in his sternum.  Everything was fine.  Joey's sternum is still solidly together and his wires are all in place.

In the meantime, Joey was charming the pants off of everyone he met.  He was waving, smiling, babbling.  We kept getting asked, "Does he always act like this?"  Fortunately, yes.  He was acting like himself.  Nothing was out of sort.  We took him home and I stayed in his room doing hourly checks to see if he would wake up easily and if he was breathing okay.

It was a long night, but by 10am the next day he was back at Physical Therapy doing his thing and I was saying prayers of gratitude that nothing bad had happened on my watch.

Tommy's 3rd Birthday
This is how Thomas Henry sleeps.  Under his pillow, frog-legged.  He is now a three-year-old and since we had just had a major, major party only 2 weeks before for Joey, we decided that Tommy would get a Family Day for his birthday.

First he had pre-school, which he seems to be getting more and more used to.  Fortunately for us, his teacher and the school have been incredible.  I worry that he is a "loner" because he tends to play alone, but I'm hopeful that he will start to warm up to the other children and play more with other kids.

Monkey Cupcakes
It was Tommy's turn to bring snacks on his birthday, so we made these chocolate-banana cupcakes.  We topped them with peanut-butter cocoa frosting.  The mouths are just Nilla wafers.  The ears are miniature Nutter Butter cookies.  The eyes are just chocolate frosting (although mini M&M's would have been really cute!).  The nostrils are also chocolate frosting and the mouths are red gel frosting.  They were really easy and we had fun baking them for his classmates.

After school we went bowling with just Tommy and then out to lunch.  We ended his big day with a Curious George cake (we bought the cake-- the cupcakes were a big enough birthday project).  A few days later we took him to see his first movie in a real theater.  The Lion King was his first movie and for almost an hour and a half he was enraptured.

Happy Birthday, dearest Thomas Henry.  

Thursday, September 22, 2011

Prayers for Mason

Today it is our turn to pray for Meagan and Mason.  

Mason is having his open heart surgery today and we pray that the doctors, nurses and staff may be guided by God's hands as they repair this beautiful baby's heart.   

We also pray for his family as they go through what can only be described as one of the most difficult acts of relinquishing control.  Handing over your beautiful child to an anesthesiologist as they put them into a quiet sleep before the heart surgery begins.

Meagan and Mason are our cyber friends and when Joey had his turn at open heart surgery on June 8th, they prayed for us.

About 1 out of every 2 children born with Down syndrome have some kind of congenital heart defect.  Out of those children, about 1 out of 4 will require surgical repair.  Joey and Mason's defects both required surgical repair.

Today we are grateful that Joey and Mason have blessed us with their very presence.  Both boys were diagnosed with cystic hygromas while in utero.  Both boys were given a 2-3% chance of ever being born.  For their amazing and beautiful lives we are so very grateful and humbled.  For their fighting spirits and courageous souls we are blessed.

As Meagan said on her blog-- prayers are what got both of our boys here.

If you think about it, at some point today, please say a little prayer for our friend, Mason.

Monday, September 19, 2011

It's Not Okay - A Lesson in Setting Boundaries

The past year has been one continued learning experience.  Just when I think I have my feet solidly under me, they get knocked out when I least expect it.  Since first receiving Joey's diagnosis of having Down syndrome at 13 weeks into the pregnancy via a CVS, I have spent most of my time trying to become okay with the diagnosis.  To accept it.  Now I'm at a place where I don't "see" that Joey has Down syndrome.  I just see Joey.  A little boy who had open heart surgery.  A little boy who works extra hard to learn to sit up.  To learn to swallow.  To learn to speak.  A little boy who gives my life meaning every single day.

There are days when I get sad or wonder if I am doing everything I can for him, but I don't regret his life or his diagnosis.  His diagnosis and his life has actually made me a better person.  His diagnosis has made me enjoy life more.  His diagnosis has helped sharpen the lens that I look at life through.

I try to be very open and non-judgmental when people ask about Joey.  It can be hard.  I don't want to live with my guard up all the time.  I don't want to be defensive and take harmless comments the wrong way.  I want to respond kindly and from a loving place instead of with anger and from a place of fear. 

On the other hand, I want to be Joey's advocate.  I want to be an advocate for Down syndrome.  I want to be a mama bear.  I want to protect him and anyone else who has Down syndrome.  

It is a thin line to walk.  It is a thin line that is ever evolving and changing.

I want to be a voice that is heard because it is calm, clear and reasonable.  I want to be a voice that is measured, but passionate.  

This reason I bring this is up is because of a pretty intense encounter I had a few days ago.  I had to take some time to digest what happened.  I had to take some time to try and find the deeper meaning.  To figure out why this particular encounter happened to me.  To see if there was some way I could make it into something more positive because by the time it was over, I was wiped out.  I wanted to go home and crawl into bed for the entire weekend.  It knocked me cold off my feet and as it happened it was so surreal.  I kept thinking to myself, "How do I get out of here?  How do I make this person stop talking?"

Here's the deal.  Words are powerful, powerful, powerful. To quote Mark Twain (saw this quote on Nuts About Nathan's blog): ”The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”

Last week I was in a social setting and talking to a person who is an OBGYN.  This person started asking me about the kids.  Then they started asking me about Joey.  Some rather pointed and personal questions.  Whenever one of these conversations start, I never know exactly where they will head.  Will it be a quick and lighthearted talk?  Will it go deeper into questions about Joey's health.  Will they ask me about the severity of his Down syndrome (no joke-- was asked how sever his Down syndrome was while he was still in utero)?  Will they tell me he has lost that "Down's" appearance (no joke-- this just happened today, a medical professional that we see actually told me that since they last saw Joey he has lost a lot of "that Down's appearance"-- I still don't know exactly what that means)?  This is what makes it tough.  I want to have an open heart and an open mind.  I want to be patient.  I want to help educate and not make people feel ashamed or ignorant when they ask questions.

What I know for sure now is that there are lines that are no longer okay with me to cross.  There are things that I am not going to talk about with a fake smile plastered on.  There are mis-statements that I am no longer going to let slip.  I pray for the strength, grace and courage to respond in these situations with a loving heart and without anger.

This particular conversation....with an OBGYN (not my OBGYN, but a professional OBGYN) went along these lines.

Them, "Did you know about the Down syndrome diagnosis before you had him?"

Me, "Yes."

Them,  "Oh, they are such happy people.  I really admire you for keeping the baby.  When I was a resident we performed terminations all the time without even thinking about it.  I performed one on a Down syndrome baby who was 20 weeks old.  I'll never forget that he was this perfect baby who was struggling to breath.  I never performed another one after that."

Me (in my head)---about to pass out.  In total shock.  Wanting to go crawl in bed and not get out for a few days.  Trying to erase the mental image a perfect, innocent baby struggling to breath.  Being killed for having an extra chromosome.  I thought I was going to vomit.

Then these words came out of my mouth and I still don't know how I was even able to speak, "You know, if you ever have a family who delivers a baby who has Down syndrome and they say that they cannot keep the child or deal with the diagnosis of Down syndrome, I hope that you will call me immediately.  We would adopt that child in a second.  Without a second thought.  Please tell your partners in your practice the same thing."

Them....looking shocked, "Really?  You would take another?  You know most of them are terminated during the pregnancy."

Me, "We would give that baby a home immediately."

Somehow I found a way to leave after this last part of the conversation and the minute I got safely inside my car I crumpled into a pile of tears.  Hyperventilating tears.  My heart twisted in knots and I just drove because I didn't want to get home too fast and have my two little guys see Mommy so upset.  

I called a family who lives near us and who's 29-year-old son has Down syndrome.  I just need to talk to someone who has faced this kind of ignorance.  Someone who has had to endure these types of invasive conversations.  The words of advice were heartfelt.  I have a new response to when someone tells me that people who have Down syndrome are "so happy".  I will tell them the truth.  I will tell them it's a myth.  

As far as conversations about abortion--well, I just hope I never have to go through that again.  In the future, if such a painful conversation comes up I have promised myself to ask the person to please stop and to tell them that I don't want to hear anymore.

However, in this case.  As angry as I was at this person and as much as I could not understand why they would ever in a million years feel the need to say such things to me, I believe in my heart of hearts that his person was confessing.  As painful as it was for me to hear about these terminations of babies, I cannot imagine being the person who was doing it.  To live with that guilt is more than I can imagine.  

What's even more scary is that there are medical companies who are busy working on diagnosing chromosomal differences (they would probably call them "defects") earlier and earlier in pregnancy.  The purposes of these new non-invasive testing methods is to provide termination options earlier and earlier in pregnancies.  What does this mean for Joey?  What does this mean for all of us?  It's a slippery slope, my friends.  One day Down syndrome is deemed not worthy of life, when is it going to be farsightedness?  Cancer?  Alzheimer's?  *For an excellent discussion on the ethics of this type of testing, see Barbara Simpson's Article "Hitler Would Love It."

Did the doctor who told me all of this want me to admire them for not performing more terminations after the last one where the baby who had Down syndrome was struggling for his last breath of life?  Did they want me to know that they had committed these crimes against humanity, but that they now know it is wrong?  It took me a little bit of time, but that is what I've chalked this encounter up to.  A confession.  

It's an encounter that was painful and that tore me apart.  BUT-- it did give me more cause to address the absolutely ridiculous rate of babies who have Down syndrome who are aborted just because they have one extra chromosome.  Just because they are not what society deems to be "perfect children".  Just because they may have some extra medical issues.  This encounter actually empowered me to establish some ground rules for myself and to really think about when I need to say, "It's not okay."

  • It's not okay to lump everyone who has Down syndrome into one stereotype of "happy people". As parents of a child with Down syndrome, we hear this about once a week, if not more.  As if being "happy" all the time takes away the pain of knowing our children will have to fight extra hard to be accepted by society and to be accepted as individuals.  Let me tell you.  It does not make any of us feel better and it is a complete myth.

  • It's not okay to terminate a baby just because they have Down syndrome.

  • It's not okay to tell someone that it is "admirable" that they did not terminate their pregnancy once they knew their baby had Down syndrome.  What kind of world do we live in where people find it admirable to keep a baby who has some medical issues?  As any parent will tell you, no child comes with any sort of guarantee.  There is also no such thing as a "perfect" person.  

  • It's not okay to tell me that you used to medically abort babies who had Down syndrome, but that you don't do that anymore.

  • It's not okay to selectively choose who gets to live and die because of their genetic make-up.  We've lived through that kind of historical precedence.  Just read a little about Hitler and his Action T4, which was the name for Nazi Germany's eugenics-based euthanasia program during which physicians killed approximately 200,000 mentally or physically handicapped individuals.   

Those are my new boundaries and this beautiful little boy is worth setting them.

Friday, September 16, 2011

Nat's View - "See What I See. Think Otherwise."

Nat Hansumrittisak is a very, very talented artist and photographer.  We met by chance over my usual grande Americano served in a venti cup at Starbucks at Pilgrim's Square and that is where a friendship blossomed and I had the fortune of meeting an incredibly talented and kind woman.  

Today I want to highlight her phenomenal talent and photography skills.  If you would like to learn more about Nat or if you would like to schedule your own family session with her, please visit her website and be prepared to be awed:  If you want to order any photos she took from the birthday party, please email me and I'll send you the password.  

Looking at these photos reminds of what was so wonderful about Joey's 1st birthday--that the  children all had such a great time.  It was a day celebrating childhood and catering to the simple pleasures that children find so enjoyable.  They ran, laughed, jumped, painted and celebrated the freedom and joy of being a child on a beautiful summer day. 

Enjoy the show and THANK YOU Nat for capturing our celebration in such a beautiful way.

"Children will not remember you for for the material things you provided but for the feeling that you cherished them."  Richard L. Evans