The Gawel Superhero Justice League: One Year Later

Side note: A few people have asked if they can forward our blog to friends, family, or post it on Facebook. The answer is always yes. When we first received JD’s diagnosis it was through other families’ blogs we found comfort exploring the life of WHS. From one blog to the next they all had different stories and each story helped us as we moved into the next stage of understanding.

When we decided to write a blog we discussed making it public or private, only for close friends and family. However, if not for other families opening their hearts with each post we might not have found the reassurance we were looking for in those first few weeks. To pay it forward we have happily shared our blog with anyone who wants to read more about a brave little man, his rascally big brother, and two average parents. Even if it only brightens one person’s day or helps one parent let out a big sigh of relief then we feel we have paid it forward.  And to the rest of you, at least you get to see some pictures of two very handsome little men.

Please feel free to pass it along as we love telling JD’s story.

Quick recap for the new readers. Read the { } as our summed up thoughts along the way:

At our 20-week ultrasound with our second son the doctor found a few anomalies {what?!?} sending us to a Level II ultrasound {scary}. During the Level II ultrasound they found more anomalies including a hole in the spine, which could mean Spina Bifida {okay, super scary}. After an amniocentesis at 21 weeks we received the news we were having a baby boy {YAY} with a very, very rare genetic syndrome called Wolf-Hirschhorn Syndrome {is this real life?}.

JD was born at 35½ weeks at 3½lbsish {the doctors literally put an –ish on his weight} and was immediately transported to Children’s Memorial in Lincoln Park {sad mommy stayed at the hospital alone}. 48 hours later doctors told us the hole in the spine was only a dimple therefore no Spina bidifa {rejoice – yay}. Over the next 3½ months JD spent his time growing, feeding, and getting stronger. Finally, on July 24^th he left the NICU to join our family at home.

Over the past year we have had anywhere from 2 – 10 appointments each week with over 17 different specialists, doctors, and therapists. Each day JD gets stronger and healthier proving life takes us down new paths that might start out scary but end brighter than we ever imagined.

Helpful posts to get the whole story:

From the Beginning

James Douglas Gawel is Here

Wolf-Hirschhorn Syndrome: One Year Later

Profile of a Handsome Boy - Part 1

Profile of a Handsome Boy - Part 2

Profile of a Handsome Boy - Part 3

Profile of a Handsome Boy - Part 4

 

On to the main post . . .

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On July 24, 2012, one year ago today, James Douglas left Lurie’s NICU for the second and final time. When he was born on April 2, 2012 he was 3lbs, 8oz. When we left on July 24, 2012 he was 9lb 0.6oz. And on July 24, 2013 he is nearly 19½ lbs.

We are not surprised. We are not amazed. We had faith with all our hearts that he would be extraordinary in his life. By 15 months he is rolling from side to side, sometimes he rolls to the belly and sometimes he rolls on the back. Working on shoulder strength, neck strength, and eating orally are the short-term goals. Long-term goals for the year are very aggressive . . .by Christmas we would love to see him sit up on his own –yikes! Even babies and stay at home moms have PMPs (I cannot for the life of me remember what PMP stands for but they were the fancy name for our work goals).

July 2012

July 2013

With JD’s surgery coming up we have had some wonderful experiences and lots of family time. This past weekend we had a family photo shoot (if you know you me then you know I LOVE a good photo shoot – even though I am the least photogenic person you will ever meet . . .not everyone can be Barney Stinson or Joanna Rutlin). But this photo shoot had a theme – superheroes . . .

One warm spring afternoon in April I received a package from a Seattle address. As I walked up the stairs opening this mysterious package I pondered who sent us something. When the package was open tears started streaming down my face. In my hand were two bright blue superhero capes. One with a C and one, just a bit smaller ,with a J . . . both with yellow lighting bolts striking through the letters. It was at that moment my boys officially became Tiny Superheroes.

A few months back I had noticed a post about this remarkable woman who started off by making a superhero cape for her son and nephew and ended up creating her own Justice League. Robyn Rosenberger, founder of Tiny Superheroes, sews superhero capes for children who fight harder everyday than the rest of us. Through her website you can nominate a Tiny Superhero to receive a cape so everyone knows what a true superhero looks like.

Who nominated JD and Connor? One of my oldest, dearest friends, Dawn, whom I have known since 7^th grade {yikes} saw the same post and thought immediately about JD. Knowing JD had his upcoming heart surgery Dawn wanted to give JD a little gift to show him we all know he is a superhero. However, it did not stop there. Dawn also knows what an amazing big brother Connor is to JD (and will forever be); she felt he deserved to be recognized as a superhero as well.

At the same time, completely separately, another friend, Andi, had recently started her own photography business. In doing so she finds ways to donate her time to some special causes. Once she heard about Robyn and her Tiny Superheroes, Andi reached out to let Robyn know she would happily do a family photo session if any suoerheroes were nominated in the Chicagoland area. When Andi found out it was the Gawel family, she was pumped. Andi is a member of Team JD and has been following him from the beginning making this an “honor” (her words) to photograph the family.

This past weekend we had our superhero family photo shoot. Less than a week before JD’s surgery we ran around Lincoln Park Zoo as a family watching as the capes waved in the wind.

I love this little guy ever so much!!!!!

Protecting his brother everyday

Gawel family favorite spot in all of Chicago

Tiny Superheroes with big hearts

Love this family shot!!!

Moving out of the city very soon but we will miss this gorgeous city

Brothers talking about life

Handsome boys

Pondering life . . . or his Fantasy Football Team

Superheroes take breaks too

My all time favorite picture of our Superheroes - tears every single time I see it

As I have sat, staring at my computer over the past few weeks trying to form the words to write the final post before surgery I kept coming back to the blue capes. Initial research on Wolf-Hirschhorn had us thinking JD would be in surgery numerous times over his first few years. It also told us we would be crying a lot as our baby struggled through life. Yet, those statements are not true.

JD had one very minor surgery at 3 months for his G-Tube placement – 45 minutes done and done. That’s it. No more. Most of JD’s challenges have improved or gone away completely. His kidneys look great, his eye sight has greatly improved, he breathes better than they ever imagined, he weighs way more than expected, he eats like a champ, and most of all his heart is strong. Of all heart issues you can have, ASD surgery is the most minor. A friend’s son had a 7 hour open heart surgery, JD’s surgery all in (prep, set-up, anesthesia, heart, etc) should be completed in 4 hours.

James Douglas has enjoyed every day of his life. Connor has loved helping his brother get stronger everyday. Nate and I have found our dream family with two adorable little boys who will grow up into strong men (and mostly like become besties with Prince George of Cambridge).

There is so much to say before JD’s surgery and yet not enough words. Thank you to EVERYONE who follows JD and Connor’s stories. Thank you to EVERYONE who emails, texts, calls, sends telegrams on a daily basis. We smile everyday knowing there is a world out there that loves our boys. Connor has never been so popular given how many people offer to hang out with him.

I cannot say it enough. Thank you for loving JD and learning about his world. It seems foolish now how worried we were that people would not accept him in their lives. In fact, I think JD makes us more popular. People like us more because of JD.

And a very special thanks to the following people:

Thank you to Dawn for thinking of our little guys and honoring them with such an extraordinary gift.

Thank you to Robyn and her Tiny Superheroes team for giving JD the cape that matches his super powers.  Even if you do not know someone who needs a superhero cape you can still donate or sponsor some little munchkin who deserves to join the Justice League.

Thank you to Andi for taking time away from your beautiful family on a gorgeous Saturday morning to spend time with the Gawels. As we go into lockdown for recovery during the month of August we can look back at those pictures again and again to relive our joyful Saturday morning.  Check out more of Andi’s work http://alwaysadorable.zenfolio.com/

Nate and I will do our best updating Team JD throughout the day on Friday, July 26. However, if we go for a few hours without an update please do not think something is wrong. There is a chance we are trying to keep ourselves busy by watching old TV shows on Netflix. 

One more quick shout out . . .our family photographer, Jordann Tomasek took a few shots of the boys before we left our condo in May leaving us with such great memories.

 Hugs and Love

-The Gawels