Wednesday, May 23, 2012

Super Joe Loves Target's Marketing Department!

The summer seems to be settling in.  Eighty-five degrees today.  Too warm to cook dinner before 7pm.  Instead, we hang out on the front porch with about 12 water guns, 5 half-empty bottles of bubbles, a blanket for me and Joey and other miscellaneous items like sippy cups and iced tea.  Today we had a stack of mail to go through.  

The shiny Target summer mailer was quite catchy.

I went through it page by page trying to figure out if I should return our $20 swim vest and use the $3 coupon offered.  I pondered the variety of bubble making options.  Considered whether or not we need a Slip 'n Slide.   I dodged streams of water shot at me from Tommy's water guns.  Tried to entice Joey with the shiny pictures, but ended up pulling a giant piece of sidewalk chalk out of his mouth.

I finally reached the end of the May Target Mailer and this is the picture on the back cover:

The coolest part?  It's like no big deal.  Just a really cool picture on the back cover of a super adorable little blonde boy with awesome blue glasses.  Oh yeah, and he happens to have an extra chromosome like our own Super Joe does.  His name is Reid and he is such a handsome little man.

Target hits a home run again.  The picture of inclusion.  Kids being kids with other kids.  Be still my beating heart.  This is what we dream of for Joey.  This is what his future teachers, friends and family will help make happen.  Thank you, Target, for helping illustrate inclusion in the everyday media and marketing.  

This is how we feel about Target:

Wednesday, May 16, 2012

Your Mountain is Waiting - Special Needs Mamas

Sometimes I think I want to try to advocate so much for individuals like Joey with Down syndrome that I think I fail to discuss some of the challenges.  Some of the realities.  Part of the reason is that I never, ever, ever want anyone to ever think for even a second that Joseph is somehow a "burden" to our family.  The other part is that once we became members of the world of "special needs", "multiple handicaps" and "children's medical" we quickly learned that so many children have far worse health concerns than our little guy does.  For those reasons, I just don't want to complain.  Another reason is that for so long we were told that Joey would never even be here.  He would never make it.  He is the boy who was given a 2% chance of surviving the pregnancy.  For these reasons and more that I learn every day-- I just don't like to complain.

That being said, there are days of fear, frustration and tears.  Days of holding on so tightly just so it doesn't all fall apart.  Days of keeping so busy with insurance phone calls, therapy sessions and doctor appointments that there is barely a spare second to respond to an email, take a shower, make a family dinner or even just sit on the couch and breathe.  Days of balancing the costs of some of these extra needs with the costs of sometimes needing to do something special or to splurge.  

I read on another mom's blog about doing something special for another "special needs" mom for Mother's Day.   Love That Max encouraged us to "pay it forward" in her pre-Mother's Day post.  Using her inspiration, we packed up a giant box for little Oliver (who is Joey's age and is fighting cancer) and his mom to pay it forward to another "special needs" mama.  Oliver, Olivia and Sarah are all little ones with DS who have cancer who are on our nightly prayer list.  Maybe you can also add them to yours? They are all under 3-years-old.  Can you even imagine?  It hurts my heart.

This next video also hurts my heart, but uplifts it in an  amazing way.  

There is something about almost losing or having lost a child that makes you appreciate every single day.  Especially the hard days.  It is a reminder of how quickly life passes.  How the challenges are what make this life so incredible and so precious.  

Lately I have been trying to take Joey out in the jogging stroller.  A friend suggested that it might be neat for him to feel the wind and that he might enjoy it.  I used to do it with Tommy all the time, but have just recently started taking Joey.  And he does love it.  It is a beautiful time for just the two of us.  My heart breaks for Ben's mama and the loss she experienced.  Her compassion, even in her pain, for other families who face extra struggles made me weep.My heart also soars from her example and her compassion for all the moms who face a little extra every day.

I hope your heart will soar.  Is your mountain waiting?

Sunday, May 13, 2012

A Mother's Love: Tradition Maker, Memory Keeper, Warrior-ess

Saturday night is our Mass time.  Five pm.  Tom usually works Monday - Saturday, so by 5pm on Saturday evenings, we meet up with him at St. Vincent's on Market Street in Akron, across from his work.  We have a little community of friends we see there every week.  They range in age from 2 to 92.  They know us mostly by our boys and they make us feel at home.  That is part of the reason we love attending and one of the other reasons is Father Kraker who gives wonderful sermons.

His Mother's Day sermon was one for the books.  He spoke of the traditions his mother instilled in his family.  Of the religious traditions she shared.  Of her spiritual leadership of her family.

He then told a story of two tribes of people in a land far away.  One tribe lived in the mountains and the other tribe lived in the valley.  They battled fiercely for decades and generations.  During one battle the mountain tribe infiltrated the valley tribe and when the battle was over, the valley tribe realized that the mountain tribe had taken an 8-month-old infant back to their mountain.  The valley tribe was distraught.  They asked each other how they would ever get that infant back.  Who could they send to the mountain to retrieve the baby?  None of their soldiers were experienced enough in the mountain terrain.  They didn't know the climate.  They couldn't stand the deep terrain.  After days of debate, they finally settled on a team of their bravest and strongest soldiers to send up to retrieve the baby and up the mountain these brave soldiers climbed.

About half way there, they saw someone coming down the mountain and they immediately were on guard.  As the figure grew closer and closer they realized it was a woman.  She was carrying the missing child.  Finally she reached them and they said, "Who are you?"

She answered, "I am his mother."

If you are a mother, or even if you have a mother, you know this story to be true.  For mothers possess a strength, a fierceness and a sense of self-sacrifice that is stronger than any other.  

For my mom, for my grandmas, for my children's grandmas and all the "moms" (aunts, babysitters, friends, teachers) they know- I am grateful.

For the opportunity to be my babies' tradition maker and memory keeper and warrior-ess-- I am grateful.  

For the love of these amazing boys-- my cup runneth over.

Much like many things in life, the older I get the more I realize I have little to no control as to how the story goes.  

About six to eight months ago we saw a presentation by a woman who has a son with Down syndrome.  She talked about how he didn't say "mama" until he was four years old.  "Four years old!" I thought to myself.  Impossible.  Even as I thought it I shamed myself for judging and refusing to believe it could be me in her shoes. 

I have given Joey false deadline after false deadline.  By Christmas, by Valentine's Day, by Easter, by Mother's Day-- surely he would say "mama" by now?  He has said "dada" so clearly and so consistently for months now.  

And yet, why does it even matter?  Surely he would not require me to perform some trick or skill by a deadline.  Putting these false deadlines on him is the equivalent of him not wanting to give me hugs or kisses until I lose another 10 pounds.  It's so meaningless in the big scheme of things.  As he has shown us over and over, he will do his best in his own time.  For that, I love and respect him-- always and forever.

This Mother's Day I am grateful for the love of my family.  I am grateful for the opportunity to be brave for them, to help create traditions with them and to be the keeper of their childhood memories.

Sunday, May 6, 2012

Tears . . . of Joy

April hit Super Joe hard.  He started out with pink eye.  Then he had to undergo general anesthesia for the Auditory Brain Stem Response.  Then he got croup.  Then an ear infection.  Then an upper respiratory infection.  The list seemed to go on and on.  

It seems he has a different plan for May.  A few months ago he finally started going from sitting to down on his tummy all by himself.  That was a HUGE milestone for him.  One of our next goals has been for him to go from being on the floor on his back or tummy to a sitting position. We knew it would happen at some point. We just didn't know when. I knew deep in my heart that one morning we would walk into his crib and he would be sitting up all by himself. 

Today was the day.  At 20 months old, our little man can now sit up on his own and we could not be prouder of him.  I can't even begin to explain what these milestones mean.  All good things come in their own time.  That is the lesson Joey teaches us every day.

I don't know why, but Tommy, Tom and I all went in together this morning to get Joey up and so we all were able to witness this together.  It was awesome!  We wooped, clapped and cheered for Super Joe.  He is starting to look much better except for the shiner under his right eye, which was courtesy of his older brother accidentally dropping the IPad on Super Joe.

What? This?  No big deal.  Just sitting here being awesome.
It's been a heck of a weekend.  Maryanne and the amazing folks at the Akron Bar Association sold all 100 tickets for the jukebox giveaway and raised $2,000 for the Up Side of Downs 2012 Buddy Walk.  They said really kind things about Joey and we spent the night jamming to some phenomenal bands.  We are grateful, humble and in awe of the kindness of the community.  We are also in awe of our own little Super Joe who surprises us every day.

Also!  Before I forget!  For the April giveaway-- Kelly Hoyt was the winner of the Wrecking Ball CD.  Congratulations Kelly!  I'll get the CD to you this week.

Have you had any tears of joy lately?  I hope so.  They are the best kind.

Saturday, May 5, 2012

A Father's Birthday Tribute: "Jon Will's Gift"

Thank you to everyone who shared this wonderfully written piece by George Will with me about his son Jon's 40th birthday.  I read every single article people send me that is related to Down syndrome and I appreciate you sending me or telling me about them so very much.  I hope you will enjoy Mr. Will's article as much as we did.   

George F. Will
George F. Will
Opinion Writer

Jon Will’s gift

When Jonathan Frederick Will was born 40 years ago — on May 4, 1972, his father’s 31st birthday — the life expectancy for people with Down syndrome was about 20 years. That is understandable.
The day after Jon was born, a doctor told Jon’s parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.
Down syndrome is a congenital condition resulting from a chromosomal defect — an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities, including small stature, a single crease across the center of the palms, flatness of the back of the head, a configuration of the tongue that impedes articulation, and a slight upward slant of the eyes. In 1972, people with Down syndrome were still commonly called Mongoloids.
Now they are called American citizens, about 400,000 of them, and their life expectancy is 60. Much has improved. There has, however, been moral regression as well.
Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.
This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.
Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.
Two things that have enhanced Jon’s life are the Washington subway system, whichopened in 1976, and the Washington Nationals baseball team, which arrived in 2005. He navigates the subway expertly, riding it to the Nationals ballpark, where he enters the clubhouse a few hours before game time and does a chore or two. The players, who have climbed to the pinnacle of a steep athletic pyramid, know that although hard work got them there, they have extraordinary aptitudes because they are winners of life’s lottery. Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not.
Except he is, in a way. He has the gift of serenity, in this sense:
The eldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.
This year Jon will spend his birthday where every year he spends 81 spring, summer and autumn days and evenings, at Nationals Park, in his seat behind the home team’s dugout. The Phillies will be in town, and Jon will be wishing them ruination, just another man, beer in hand, among equals in the republic of baseball.

Wednesday, May 2, 2012

Jammin' For Justice 2012 -- Join Us THIS Friday!!! Benefiting The Up Side of Downs!

One of the craziest things about having a child who has some extra needs is that sometimes you need to accept help.  You need to accept love.  You need to accept gifts.  Even before Joey was born I realized that he was not just our child.  He is God's child. He is a child of the universe and we are fortunate to be his parents, but he truly belongs to all of us.  

According to Webster's a gift is:

Definition of GIFT

: a notable capacity, talent, or endowment
: something voluntarily transferred by one person to another without compensation
: the act, right, or power of giving

Sometimes it is easier to give than to receive.  To receive means to understand and accept that you cannot do it all by yourself and why should you if there are friends and family who want to help?

Before Joey was born and the days and months since, we have relied so heavily on the kindness of family, friends and sometimes even strangers (thank you Kelly and LoLo for taking Joey to the doctor while we were out of town!!!xoxoxo).  I have come to understand what the phrase "it takes a village" means. 

Super Joe at the Cardiologist.  Diagnosed with high blood pressure this visit.  Ugh. :-(

I don't know where the time has gone, but the 2012 Buddy Walk coordinated by The Up Side of Downs is this July 28th at Progressive Field.  Last year we sold shirts (Joey's All Stars), one kind friend and neighbor held a bake sale and another kind friend who is a hair stylist donated all of her tips from work.  These were such incredible gifts.  The monetary donations were not the "gifts". It was the thought,  time and kindness behind organizing such thoughtful and generous acts.

Modeling a "Joey's All Stars" shirt from 2011.

I think the best part about a gift is the element of surprise.  That moment where you catch your breath because you just can't believe someone would do something so kind and so wonderful.  

This gift is from a wonderful, beautiful and amazing  friend.  Maryanne.  We were a tight little group that played tennis every Wednesday night.  Maryanne, Brenda, Bonnie and me.  Before I had little ones it was much easier to fit in a weekly tennis match on Wednesday nights. Then came Tommy and soon Sheryl was a part of the foursome-- we had now become five as Sheryl played almost every week as a sub for one of us.  Following Sheryl, Barb came.  Now we were six and it was still an even more incredible group.  Each woman brought her own sparkling personality and life experiences.  

These women play competitive, but supportive tennis.  If you hit a good shot, they were the first to complement you.  It was a homecoming every week as we caught each other up on our lives, families and jobs as we warmed up for the match.  

For one summer, Brenda's daughter, Brittany babysat Tommy while I worked.

Brittany and Tommy (when he was 11 months old).
Tommy today.

Then, in the blink of an eye, Brenda was diagnosed with cancer.  I still remember our last USTA tennis match we played together as partners.  She had already found out about having cancer, but didn't tell anyone until later.  I will always be grateful for that last match we played.  A few months after that last tennis match I found out I was pregnant with Joey.  When we were told 13 weeks into the pregnancy that he only had a 2% chance of surviving I abruptly stopped playing in our weekly tennis matches and I quit teaching my Saturday Spinning Class.  I was so fearful of doing something wrong that might hurt him and I was afraid of being around people and not being able to hold it together.

Our kind and wonderful tennis ladies didn't let me run away and hide.  Prayers, emails, texts and phone calls made sure that I knew I was missed on those precious Wednesday nights.  Every Wednesday at 7pm I felt a pang of sadness knowing that I wasn't out there on the courts with them.  

Although she was incredibly weak from chemotherapy, Brenda and Brittany came over a couple of days before Joey was born and prayed with us.  Just as she had done when I had a crazy procedure while pregnant with Tommy.  Just as she had during our weekly Bible study breakfasts at Beau's and then our one on one sessions at Caribou Coffee (where she found the time to be a Judge, mother of two, wife, volunteer and still fit in all of the Bible studies she did I will never know!!!).  It did not matter that she wasn't feeling well, could barely eat and was not going out very often, she came over and prayed for us, prayed with us and prayed for Joey.  A gift. 

When Joey was born, the tennis girls were there to celebrate! 

When Brenda passed away in March of 2011, we came together again to mourn the loss of our incredible friend.  Though she was no longer physically with us, Brenda had changed each and every one of us for the better in more than one way.  Her legacy will forever be in our hearts and in our friendships.

Jammin' For Justice

When Maryanne told me she wanted to do something to help raise funds and awareness for Down syndrome, the surprise of her gift and the generosity of it brought me back to all of those wonderful Wednesday nights.  Every year, she is in charge of a wonderful fundraiser for the Akron Bar Association called Jammin' For Justice that raises funds for Pro Bono Legal Services.  It is a serious party at Musica in Akron and features lawyers who play in bands rocking it out from 6pm-10pm.  Sounds like fun, right??? You can buy tickets to attend here.

Jammin' for Justice

Jukebox Drawing for The Up Side of Downs

In addition to putting together this huge event, Maryanne also ran an article in the Examiner about Joey's journey and about the Buddy Walk and what The Up Side of Downs has meant to our family.  This year, at Jammin' For Justice, they are selling only 100 tickets for $20 per ticket for the chance to win a CD Jukebox valued at $2,000!!!!   All of the money raised from the sale of these tickets will go to The Up Side of Downs and this year's Buddy Walk team.  

It is so incredibly overwhelming when friends and family help support a cause that is so dear to your heart and want to help spread awareness.  For every act of kindness our family and friends have done we are forever grateful.  We thank everyone in Joey's village who help us along the way every day.

Hope to see you Friday!  Cheers!