Random Conversation

Last couple days the kids have been under the weather.  Both were home from school on Friday.  Deedah has a virus, and Jonathan has an ear infection.

Jonathan started getting bored Friday afternoon.

Jonathan:  “Mom, I want to out to play”

“Honey, you can’t.  You’re sick.”

“But Mom, that’s the way God made me!”

“God made you sick?”

“No!  God made me to play!”

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Perfectly Human – Why are we here?

I was asked to guest blog over at Thin Places for the Perfectly Human series:

Every day when I return home from work, as soon as I am through the front door, I can hear Jonathan scampering toward me yelling “DADDY!  Daddy’s home!” I immediately receive a bear hug and a huge smile. Funny thing is…

Read the rest here.

Thank you Amy Julia for the opportunity to share Jonathan’s story.

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Pesky Little Brother

Charlotte dances, goes to Girl Scouts and attends school with a great group of girls.  Often her “pesky little brother” is thrown into the mix during our comings and goings with carpools, birthday parties and after school and in school activities.  He is also on hand for all the recitals and other big events in these girls’ lives.  Some of the girls simply tolerate Jonathan.  Others adore him and dote on him.  He is especially fond of one of them.  In fact, one sure fire way to ensure Jonathan cleans his room is to tell him that this particular girl is coming over – in about five minutes.  His room will be spotless in about four minutes.  :-)

I am often taking pictures of this group of girls.  (Some of the girls tolerate me and my endless picture taking.  Some of them adore it. None of them, however, dote on me as they do my son – go figure! :-)) At any rate, there are endless pictures of the girls and often, there is a seemingly random picture of the girls with the “pesky little brother” in the shot.  Most recent case in point: last Saturday night following the girls’ performance in the Nutcracker.  As is our tradition, we head over to Savannah’s famous Leopold’s Ice Cream shop after the show.  And is our tradition, the cameras are clicking.  Check out this picture – a very common occurrence:  Jonathan front and center with a chocolate ice cream goatee, as I’m trying to take a shot – of the girls – WITHOUT the “pesky little brother.”

Eva, Megan, Grace, Charlotte & Jonathan

***

Also on hand that night was a “pesky older brother, ” the older sibling of one of Charlotte’s  gal pals, Lizzy.   Michael, like Jonathan, is also thrown into the mix on occasion for Lizzy and Charlotte’s special events.  Michael’s grandmother was also there on Saturday night, out of town from Ohio, to see her granddaughter in the Nutcracker.  Apparently the next day, the grandmother, a former kindergarten teacher, started asking Michael and Lizzy about Jonathan.   Michael’s mom emailed me to tell me about the exchange.  It went something like this:   “Michael was commenting on what a cool kid Jonathan is.  My children’s last comment about him was about Down syndrome.  What a positive result of having Jonathan in our school family.  Meaning my kids (and I) don’t look at Jonathan through his disability but as a neat boy to have as a friend.”

Wow!  Michael, Lizzy and your mom, Susan, thank you for making my day!

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Thanks

As I approach this Thanksgiving, I think back to this time almost eight years ago, shortly before Jonathan came into our lives and how much differently I feel today compared to how I felt then.  Back then, self-pity was the overriding emotion.  Today, it’s gratitude.

Flashback to Thanksgiving weekend, 2002.   It is Sunday, December 1st and Phil is in the kitchen making spaghetti.  (Why he wasn’t preparing turkey leftovers is anyone’s guess – maybe we were sick of them by then – who knows?  I was just glad he was cooking and not me.)  I’m sitting on the lazy boy in the living room as big as a whale and with a big, bad attitude to match.  I’m scheduled to be induced nine days later and I am still feeling very shaky about this baby.  I know the baby has Down syndrome and several holes in its heart.  I’m tired and scared and don’t know if I’m up for this. I know I have to go back to work the next day and continue to put on a happy face on the evening news.   I’m still asking over and over again, “why me?”

I interrupt the pity party to flip on the TV, ready to distract myself with the then usual Sunday ritual in our house of watching 60 Minutes.  Phil has the TV on in the kitchen as well, also ready to tune into Morley and Lesley and the rest of the 60 Minutes gang.  But as I turn on the remote, it’s not 60 Minutes that comes on – it’s Dateline NBC, a show I’ve never watched.   And as soon as it comes on, I can’t turn away. They are doing an entire hour on a Boston couple who is wrestling with the decision of whether or not to abort their baby, who has Down syndrome and several holes in her heart.

I yell to Phil, “Change the channel to NBC!  There’s a show about Down syndrome!  We have to watch this!”  For the next hour, I am mesmerized.  Although the couple is seriously considering abortion and we never did, they are still playing with the same deck of cards we were dealt.  And thankfully, they also chose to have their baby.  And thankfully, for me, I was able to see this child as this one hour news piece evolved, as a toddler, not a tragedy.

The story portrayed the couple’s pregnancy, decision, delivery, heart surgery and beyond.    And so, there was this beautiful, happy three year old girl on the screen in my living room – thriving, in a mainstream preschool class, her heart surgery long behind her, living a wonderful life.  And there were her parents, clearly grateful that they chose not to end her life.  In fact, like all parents, not able to even imagine what life would be like without her.

And so, sixty minutes in front of the television helped erase almost 20 weeks of self-doubt. (20 weeks into my pregnancy an ultrasound first tipped us off that the baby definitely had a major heart defect and likely Down syndrome.  Two weeks later that was confirmed in an amino.)  I thank God that I saw that show that night.  Not that I ever regretted or questioned our decision to have this baby.  Don’t misunderstand.  It was the not knowing what to expect when our baby got here that was gnawing at me.  (Somehow “What to Expect When You’re Expecting” just wasn’t cutting it this time.) How would this baby affect our lives?  Was I going to be able to be a good mother to this baby?  Was I going to be resentful?  After all, I’m thinking, I’m being robbed of the “perfect” baby that I had signed up for – certainly not this one.

I’m not proud of those thoughts and feelings, but they were there – raw and painful and almost constant.  But the NBC show helped put things into perspective and gave me a realistic picture of Down syndrome, not the stereotype that up until then, I, and unfortunately, most people without any firsthand knowledge, buy  into.  It helped to confirm my belief that Phil and I had made the right choice.  But it also gave me confidence that this baby was going to be fine – in fact, there was no reason to doubt that this baby was going to be great.

I now believe God put me in front of that television set that night watching my favorite show’s competition for a reason – to give me comfort and to prepare me for what was coming.  And it came – very soon after that.  Instead of being induced nine days later, Jonathan had other plans and decided he was ready to come into the world, without being induced, four days later.

Thanks to Dateline NBC, I was able to welcome the birth of my baby, instead of dreading it.  And now, as we head into this Thanksgiving weekend, eight years after the Thanksgiving weekend that began with worry and self-pity, I am thankful that I have a wonderful son, who is bright and funny and loving and sometimes naughty.  And that I would love him no matter what.  And that Down syndrome is just a small part of the incredible human being he has become.

*In case you are wondering, the Dateline NBC program profiled Greg and Tierney Fairchild, who are the parents of Naia.  Their story was first shared in a series of articles in the Boston Globe looking into the many issues raised by prenatal testing.  It eventually became a book.  The series can be found here and the book is Choosing Naia.

Update:  You can read the first 30 pages of Choosing Naia here.

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Where is Dad?

I have been traveling a lot for work lately.  Jonathan left me a phone message this week letting me know that he figured out what I am doing:

I’m off fighting crime and bad guys.

I think I’ll let him think that for a while.

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Why we made Deedah, and how we hope people will use it

The simple answer is we wanted to demystify what is like to have a child with Down syndrome; to show that Jonathan really is a blessing.  We wanted to encourage parents, and to educate children.  Sometimes someone says it better than you could ever say it yourself.

Katie Routzahn is a elementary school counselor in Virgina.  She also has 5-month old twins, Avery and Jack, who are absolutely beautiful! (trust me on this)  Avery has Down syndrome.  We received this email from Katie a few weeks ago:

I wanted to let you know how much I LOVE Deedah! I ordered the DVD when my babies were only a few weeks old, because I saw a preview online when I was doing some research. I thought it would be perfect to have in the future for Jack. My husband and I have watched it numerous times together, and have show it to our family members. Down syndrome is something new to our immediate family and many of our friends, and this was a perfect resource. We have laughed and cried and experienced a wide range of emotions due to this video.
I returned to my job as an Elementary School Counselor 3 weeks ago. I am still trying to find my balance between home and work, but we are all hanging in! This is my 3rd Friday and I am feeling somewhat human at the end of this week… so that is a GREAT sign! Prior to my return I shared the news of my babies with my school community so when I came back many of my students had questions about Down syndrome. It became quite clear to me that showing them Deedah was the perfect answer! My school district is also taking a big stand on bullying prevention as part of our classroom lesson curriculum this year so I was able to tie the two topics together perfectly! By the end of the day today I will have shown Deedah to 12 classes that range between 20-28 kids each. I have 4 more classes that will watch it next week.
Jonathan and Charlotte are total movie stars at Lovettsville Elem.!!! My students and teachers LOVE the video!!! The 5th graders I just left clapped at the end of the video and then again when I left the class…. they all want to buy the video. Several students this week were convinced that Jonathan rode their bus (no… we don’t have and students with Ds), and some swear they have seen your family at the Costco in Leesburg, VA. I told them that you all live in GA :-), and then it was pointed out to me that maybe you were visiting family or friends.. haha! Deedah has sparked such great conversation and awareness for both Ds and bullying prevention. I am just thrilled you all have produced such an awesome resource :-) I have told the kids I follow your blog and was able to tell them all about Jonathan’s new hair cut, cub scouts, and how well he is doing this year in school.
My husband and I love our kids so much and have committed ourselves to educating and advocating for our daughter and other people with Down syndrome. I can not even begin to tell you the positive impact your family has had on us in such a short amount of time. This is a whole new world to us and we are doing our best to prepare for wherever it will take us over the years!
Thank you for all that the May family has done. Please know that Katie, Evan, Jack & Avery Routzahn are going to be doing their best to make a positive difference as well.
Take care,
Katie Routzahn

Wow!  Then a week ago, we received this update:

Just wanted to send you a follow up e-mail to give you an update on the impact “Deedah” has had on my elementary school! So I showed the video to 16 2nd-5th grade classes during one of my bi-weekly classroom guidance lessons. When I started on my next lesson rotation every class I visited asked me if we  were going to watch “Deedah” again?? When I told them we were not going to rewatch at this point because we had to move on to our required bullying prevention unit I got some boos from the kids.  They LOVE “Deedah”!  Some kids have told me they have checked out your website with their parents to show them what we learned (I also included the link in a recent school newsletter), others have asked if they can take my dvd home to share with family members, and some ask me for Jonathan and Charlotte updates since I mentioned I read your blog. It is funny to hear the kids talk because they act like they know your kids just from watching the dvd :-) Some parent volunteers happened to be in a classroom I was showing the video and they all loved the video and have told other parents about “Deedah”.
Several parents have stopped by my office or grabbed me walking in the hallway to ask if they can check out my copy of the dvd. I knew people would enjoy the video, but I had no idea the overwhelming impact it would have on my school community. It is my sincere hope that these students and families will continue to educate others and promote Down syndrome awareness. Thank you for taking the time to create such an awesome resource!!! Jonathan, Avery and so many others will benefit from your hard work!
My last class today was a 5th grade class… it has been a crazy week… and they had a substitute teacher. When I went in to teach several hands shot up in the air asking if we could watch “Deedah” again? When I told them we had to move on… they just kept asking and talking. It was craziness! So I figured oh well what is a few minutes off of our planned lesson and I showed them the video you posted from the Buddy Walk. The kids were so excited, and several of them have already asked me if they can walk with Avery’s team next year. I can’t tell you how much I needed this encouragement and excitement from others this afternoon.
Hope all is well with your family!
Best,

Katie

We didn’t set out to make Charlotte and Jonathan movie stars (perhaps we didn’t think that one through very well.)  We did hope the DVD would give support and hope to parents who have learned they are going to have, or have just learned they do have, a child with Down syndrome.   We are thrilled it hit the mark with Katie and her husband.

We also have a vision of every elementary student learning about Down syndrome in a positive way.  That each child sees that children with Down syndrome are just like other kids, that they have all the same dreams and needs, but simply a little different path.

Katie has returned to us the greatest gift:  using Deedah to educate children about Down syndrome, and helping us change a generation of children.  We continue to be amazed and overwhelmed by all the passionate parents and advocates who are taking Deedah to schools, to doctors and to others who will impact our children’s future.

Thanks Katie!  And congratulations on your two bundles of joy.

I Love you, Sissy

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Rated PG

We try really hard not to offend anyone here at Deedah and me.  The blog confronts difficult situations and we discuss sharp feelings, but we avoid the controversy and keep things mostly rated G in this rated R world we live in.

The kids do a lot of things that we as parents are not proud of and, we don’t blog about every time Jonathan sticks his finger up his nose.  But sometimes that which comes from the mouths of babes is so shockingly funny we just gotta share.

So fair warning, the following discusses lady parts…

Halloween, 2010

In the eve’s (yes, there was more than one) leading up to Halloween, Jonathan was continuously clad in his costume (which we think is one of the superheroes from G-force, but this is yet to be verified.)

Muscles are printed on the costume to give my little beanpole the illusion of mighty pectorals.

Charlotte pointed to his chest and said, “Jonathan! your costume has boobs!”

Jonathan yelled back, THEY’RE NOT BOOBS! THEY’RE TITS!”

…and lest you fear our children are raised by wolves, mom did correct the record with an on-the-fly anatomy lesson (and was able to stifle a laugh.)

Halloween, 2010

Charlotte, Abbie and Jonathan with his super-pecs

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What might you become, Jonathan?

What Jonathan’s adult life will be like is in the top 5 things I think about in the quiet moments.

Let’s face it, he is unlikely to be a surgeon, or Chief Financial Officer, but I suspect he will exceed most of our expectations.  Why not?  He has so far.

We try hard to set high expectations for him, and it is already ingrained into him that he will complete college.  If you can’t dream it, you can’t do it.

In a previous post, we talked about Tim Harris who has a restaurant in Albuquerque.  Here is another career I could see Jonathan doing, and doing well.  Ben Majewski works at Children’s Hospital Boston.  Please take a minute to read his story.

Just thirty years ago, children with Down syndrome were frequently thought to be unteachable and were frequently institutionalized.  Look at how far we have come.  What kinds of careers might be available to our designer-gene children?  It’s exciting to contemplate.

***

There are a lot of people breaking down walls for our children.  One of the ways this is happening is the confrontation of the language used to describe people with intellectual disabilities–the battle to end the use of the r-word.   This speech given by a high school senior is one of the most powerful messages I have seen on this subject.  Please take the ten minutes to watch this video, and pass it on to others.

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Progress report

I don’t think about Jonathan’s development on a day to day basis.  I don’t dwell on the likelihood that he will need more than 18 years to get through high school.  Rather I take comfort in the fact that if we do the right things by Jonathan each day, he will be alright in the end.

Given this rose-colored stumbling through child rearing, I am mostly happy with how things are going.  There are, however, a few times when the reality of the situation comes home and I have to hear and face the fact that Jonathan will be behind “normal” kids of his same age.

When we meet with his teachers for his Individualized Educational Plan (IEP), it is a difficult conversation for me.  This is when I hear that Jonathan is behind and needs help that other kids don’t need.  To me, he is “perfect,” so when we are given unvarnished feedback about where Jonathan needs help, it hurts.

Another memorable conservation of this type was when Jonathan’s fantastic kindergarten teacher, Mrs. McCray, recommended that Jonathan stay back a year before going into first grade.  (Mrs. McCray was the teacher that gave the lesson on bullying in the Deedah DVD.)  Although deep down we knew we would likely have this happen a time or two during his school years, it still stings.  Part of it is to think of the friends he has made drifting on ahead; part of it is the reminder that it will be harder for Jonathan in all the things he strives for.

We have been so blessed to have people supporting Jonathan’s development.  He has teachers who push him to keep up, and paraprofessionals who nurture him with tough love.  These people have become close friends whom we love more than we can express.  Brooke tirelessly sits with Jonathan everyday and makes sure he completes his homework.  We try to read to him every night.  (I have literally been woken up by Jonathan having fallen asleep while trying to read him a bedtime story.)

We also have blessings from unexpected places.  One pleasant surprise came last year when Jonathan sat between two kids who really pushed him to keep up.  When an exercise was given, they would encourage and cajole Jonathan, “C’mon Jonathan, you got to get this done.”  Jonathan hates to be left behind and this sort of push was very effective.

***

Do parents that are always bragging on their kids annoy you?  The endless monologues focused on how brilliant their kids are, smarter, better athletes, more after school activities… If you can’t take it, you’ll have to forgive me for a just a minute.

Last week, Jonathan came home with this:

Well….what can I say.  My heart is swelled up pretty big, and those of you who know me can imagine my eyes are little misty.

I think Jonathan is going to be just fine.

(According to Charlotte, E’s are Excellent and S’s are Satisfactory, and “Mr. Myers is a REALLY tough grader.”)

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We’re more alike than different

A little green faux-hawk left over from crazy hair day

huh?

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