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

1

: a notable capacity, talent, or endowment

2

: something voluntarily transferred by one person to another without compensation

3

: 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.

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!

It's A Bird! It's A Plane! It's Super Joe!

He never ceases to amaze us.  He had to stop eating and drinking 8 hours before he went under and it really did not seem to bother him as he gave the nice lady in registration his big smile, which comes with a side of two perfect dimples.

It will be a year in June that Joey had his open heart surgery and it seemed surreal to be back in a hospital going through all these steps again.  Checking in.  Getting assigned a room.  Getting a hospital gown to dress him in.

I am still in awe at how smoothly the day went.  We met with a registered nurse, a nurse practitioner, a child life specialist (AMAZING!!!), the anesthesiologist and we spoke with his ENT who was in the OR with him.

At every single step of the way, someone was there to explain to us what was going to happen, how it was going to happen and when it would happen.  Through it all, Super Joe charmed their socks off.  He hadn't eaten or drank (the thickener counts as a solid, so he couldn't even have "clear" liquids that morning) in about 8 hours, but you would never know it as he smiled at each new person we met.

He is so much bigger now!  So much older.  Every day I realize he is not a "baby" at all anymore.  He is really becoming a little boy.   A wonderful "Child Life Specialist" came in and had Tom and I put on surgical hats, she brought the "gas" mask for Joey to examine and she practiced putting it on his face.  She was incredible.  She helped to de-sensitize him to what would be happening, but I think she mostly helped me and Tom.

Because this was not an invasive procedure (other than being put under general anesthesia), the stress was not nearly as high. However, because this is almost a year later he is so much more aware of what is going on and when they came back and said it was time for him to go back, I panicked for a minute.  I wanted to pop him back in the stroller and hit the road.  But Joey was being Super Joe and he didn't cry when we put in him the stranger's arms.

For about 2 1/2 hours we waited out in the waiting room with Tom's mom.  After the first 20 minutes, the doctor came out and said his tubes were still in and that his ear structure looks great.  Finally, our pagers went off and the audiologist came out to talk to us about the findings of the ABR.


They cleaned out a bunch of wax from both ears and they suctioned a bunch of "goo" from him nasal passage.  She said his right ear was perfect-- WOO HOO!!!!!  She told us about his left ear, which has "moderate" hearing loss at some levels.  From what we could understand there is mild, moderate and severe.  For now, we aren't going to need hearing aides and we are just going to follow up every six months.  She told us about possible surgeries down the road after he is 7.  She told us about a "soft band" hearing thing that goes around the head that little ones sometimes wear that is eventually implanted permanently into the side of the head.  Things we aren't going to worry about for today.  For today, he made it through and we couldn't wait to see him.


Finally, we got the second page that meant it was time to go back to recovery.

Super Joe was so very tired.  The nurses in recovery were so sweet.  They didn't want to give him up because he was such a warm, cuddly snuggle bug, but I had to get him back in my arms.

We were in Recovery 1 for about 45 minutes and then we got moved to Recovery 2 where we stayed for about an hour while he came out of the anesthesia.  It felt so good to get him back in our arms.


We're so proud of you Super Joe!


Happy Weekend!  Have your babies made you proud this week?  Give them an extra squeeze!

Joey- Can You Hear Us? The Long Awaited ABR & Wrecking Ball Contest

Joey- Can You Hear Us?

For a number of reasons tomorrow has been in the works for quite a long time.  Joey passed his newborn hearing test, but has not been able to successfully pass a hearing test since.  In November he had tubes put in to help alleviate the fluid in his middle ears and to hopefully help him pass the hearing test.  Still no success.  Since November we have been trying to schedule his Auditory Brainstem Response Evaluation (ABR), but it has been a little bit of a struggle to get it done.  Typically an ABR can be done with the child under a "twilight" sedation and sometimes the mom or dad can even hold the child in their arms while the child is tested. The hospital Joey is having his test at requires that children with congenital heart defects (ASD/Mitral Valve for Sweet Baby Joe) and/or Down syndrome have to have their ABR performed in the operating room under general anesthesia with an ENT present.  

An ABR is required when doctors suspect that your child has sensorineural hearing loss.  The test is not invasive at all, but the process of being intubated and put under general anesthesia for a couple of hours is what takes us back to that long day in June 2011 when we handed him over to anesthesia for his open heart surgery.  The ABR will test how well sounds travel along Joey's hearing nerve pathways from his ears to his brainstem.  It will show the softest sounds his ears can detect at various pitches.  It will tell us whether or not he will need hearing aides. 

Compared to his heart surgery it's not really that big of a deal.  Today was like groundhog's day of a year ago before his heart surgery.  Much like before his heart surgery, Joey's thyroid levels peaked and they wanted us to get it re-tested today to make sure it's okay for him to go under anesthesia tomorrow.  

Joey was incredible.  We waited for 1 1/2 hours for the lab (they were short-staffed today) and we listened to the tears and cries of every baby and child who went before us to get their blood drawn.  While we waited for our turn at the stab, Joey smiled, waved and charmed the entire waiting room.  When it was our turn he sat on my lap while two nurses and Dad held his arm, he literally smiled-- BIG SMILED-- gave his full on double dimples to both nurses, never shed a tear and we were out in two minutes.  The entire waiting room looked at us and wanted to know what we had done back there.  Two words.  Super Joe.  

It was not the first time I was incredibly proud of this little boy wonder and it won't be the last, but it was just such an overwhelmingly positive experience that I was a little emotional with gratitude.  We sat there for an hour and a half and instead of being fussy or whiny, he smiled and waved and interacted with every single person in the room.  I don't know if it is his extra chromosome or if it is his awesome personality, but Joey tends to bring out the best in everyone he meets and today I just breathed it in and enjoyed every second of it.

By 2pm I had not heard anything so I started calling numbers on my list of pre-op preparation.  Super Joe has done it once again. His thyroid levels dropped and he is good to go for tomorrow's procedure.  I am trying to be prepared.  He will be out of our arms for 3-4 hours, which seems like too long to me.  The heart surgery was between 7-8 hours.  This time he is older, more aware and with every day my heart is more and more and more entwined with his, so I'm pretty sure it will be my heart breaking as we hand him over.  

So I prepare myself for what may happen.  Will he need hearing aides?  Maybe.  That's not the worst thing in the world.  I know that for sure.  As I read every night about Joey's little friend, Oliver, who is fighting AML (cancer) for 8 months in a hospital on the East Coast, I know in my heart that hearing aides, thyroid medicine and all the other little things in between are by far not the worst thing he could be facing.  Plus-- he rocked out in his super blue helmet with no problem.  He will be rocking out in his leg braces at some point with no problem.  He whizzed through heart surgery.  He is truly our Super Joe.  If hearing aides are what he needs, then hearing aides are what we will get him.  

This week has been a little bit of a rocky road for Joey.  We've had to discuss things like his thyroid, celiac disease (no word on that, yet), this ABR stuff and then we had another exam in which we were told by the second person that he most likely won't walk until he is between 3-4. Worst things ever?  No.  Plus-- no one really knows when Joey will walk.  For now we carry him and repeat our motto of, "We're enjoying carrying him now because someday we won't be able to and he won't want us to."  

So, if you think of it-- please send up a little prayer that Joey sails through his ABR tomorrow and that he does not need to get hearing aides.  Thank you in advance for your prayers! 

A Quick Thomas Henry Update

He has figured out we all have middle names.  He has taken to calling me "Jennifer Dawn".  I try to hide my laughter.  When I read his stories to him at night, if I make eye contact with him, he points at the book, yells at me and says, "Speak to it!"  It took me a few nights to figure out what he was talking about.  He means "read the story", but instead says, "Speak to it!"  He loves to bake cookies for his daddy.  

I dropped him off at pre-school the other day, where he had suddenly started getting into a bit of trouble (hitting, kicking-- you know the things that make all moms want to crawl back into bed for a week or two with a bottle of white wine) and I asked his teacher how he had been doing.  She said he was doing better and that he was so very "F-U-N-N-Y."  I appreciated her spelling it, because I know what she means.  He is so very, very funny right now.  It makes it very hard to discipline him, which is what I know he really needs.   

Oh- he is also just like his mama and has very sensitive eyes so he always needs his sunglasses.

In the meantime, he is becoming such a big boy with moving from his crib to a big boy bed and he has also stopped sucking his two fingers.  Oh, my, precious little man.

Yesterday he asked me if therapy hurt Joey.  I told him absolutely not.  It helps him.  He said, "Okay, mom."  

Bruce Springsteen Wrecking Ball CD Contest

Two concerts down and two to go.  With each concert there is a new song that becomes our battle cry and hymn.  Last night in Cleveland I walked away singing this one over and over.  Then I thought-- "Geez....it really isn't fair to keep talking about these awesome songs and not sharing them."  Thus-- a new contest!  All comments through the rest of April that are left on the blog will be eligible for a drawing for the new Bruce Springsteen CD: Wrecking Ball.  


Here is my follow-up battle hymn to "My City of Ruins".  This one is called "Rocky Ground".  Oh, how it speaks to my heart.  Our journey is not truly one of incredible struggle or pain.  It is more of a lot of little things that over time can become weary.  I hope you find these words as powerful and inspiration and uplifting as I do.  As soon as we can get through the ABR, etc., I am going to write a post on how to try to get front row tickets to Bruce Springsteen.  Did I mention I got to touch his hand last night???? 

Cleveland concert 2012.

ROCKY GROUND

(I'm a soldier!)

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

Rise up shepherd, rise up

Your flock has roamed far from the hills

The stars have faded, the sky is still

The angels are shouting "Glory hallelujah"

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

Forty days and nights of rain have washed this land

Jesus said the money changers in this temple will not stand

Find your flock, get them to higher ground

The floodwater's rising, we're Canaan bound

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

Tend to your flock or they will stray

We'll be called for our service come judgment day

Before we cross that river wide

The blood on our hands will come back on us twice

(I'm a soldier!)

Rise up shepherd, rise up

Your flock has roamed far from the hills

Stars have faded, the sky is still

Sun's in the heavens and a new day's rising

You use your muscle and your mind and you pray your best

That your best is good enough, the Lord will do the rest

You raise your children and you teach them to walk straight and sure

You pray that hard times, hard times come no more

You try to sleep, you toss and turn, the bottom's dropping out

Where you once had faith now there's only doubt

You pray for guidance, only silence now meets your prayers

The morning breaks, you awake but no one's there

We've been traveling over rocky ground, rocky ground

There's a new day coming

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

Oh, a new day's coming

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

Oh, a new day's coming

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

There's a new day coming

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground