Thursday, July 30, 2009

Clearance to Swim!

Three weeks post-surgery. Has it only been three weeks? Has it already been three weeks? Time seems to be suspended as we eagerly watch Hank's face for signs that he is healing. Each day he looks more and more like his old self...after getting used to the atrophy on the left side of his face, we are now trying to get used to the fuller-than-full left side of his face. He has lots of energy and wants to be outside and doing things!

I am amazed at the quick recovery of this child. Hank has always worn his emotions on his sleeve...and I think because of it, he sometimes seems younger than he is...but really, he has shown us that he is much older than his eight years. He is strong both physically and mentally. He is stoic. He is brave. He marches on...and so do we.

Lucy and Charlie are so happy to have their big brother home and don't like leaving his side. They have all taken to sleeping in the same room. Alternating between bedrooms and the playroom. I think the separation was hard on all of them and they are making up for lost time!
The first week home, we truly spent AT home. Hank did not want to go anywhere. I wasn't sure if it was because after 17 days away, he was just so happy to be home...or if he just didn't want anyone to see him yet. So we very slowly started to have him around other people. First just his Aunt Barbara, Uncle Chuck and cousins Christy and Nick came over to welcome Hank home. He happily showed them the incision on his back and seemed very comfortable. "OK, he's good with family," I thought.

The next step was the ice cream social at the Montessori School that Lucy and Charlie attend. The directors of the school, Christine and Julie were all smiles when they saw Hank, and welcomed him home. Hank seemed completely comfortable with being around other people, many of whom have supported many of our fundraisers. One of the teachers (who is also a parent), Sandra came over to say hello, along with her husband. They were so glad to see us and wanted to know how Hank was doing. They had followed along with the blog and were up to date, and had been thinking about Hank. Hank didn't seem to mind that we talked about his surgery and recovery. "Alright, we are making progress," I thought to myself.

That night, I sat down at the computer and was looking at photos of Hank. He came in and sat with me. "Look how much better you look now, than right after surgery," I said to him. We then looked at some pre-surgery photos. "Look how thin your face was," I continued. Hank studied the photos and then said, "I miss my old face," as the tears started to spill over his eyelashes. "I know..." I told him, "but your face was changing and we had to do the surgery." He nodded, but the tears silently ran down his face as he buried his head in his arms. "Oh no!" I thought. "What am I going to do? How am I going to make him understand that we had no choice?" I really thought he understood.... And then I had an idea....

After Hank's surgery, we spent time in Connecticut with the Richard family. Their son, Kyle, had the same surgery 15 years ago. I have never shown Hank the pre-surgery photos of Kyle. I have never wanted Hank to know that this disease is progressive. I didn't want him to spend his time worrying what might happen...but I realized that my back was against the wall and I had no choice.... "Hank, do you want me to show you what Kyle looked like when he was little? Before he ever had the surgery?" "Is it bad?" he asked. "Yes, very bad," I told him. "Will it give me nightmares?" he asked. "It might...but I think you need to see them." "Ok, I'm ready," he said. I went and got the board that my sister, Barbara, created for the winery fundraiser. With Kyle's permission, we put his before and after photos on a board, to show what Parry Romberg Syndrome really looks like, since Hank had not progressed as much.

Jeff came in and sat on the bed next to Hank as I walked in with the board. "Hank is upset," I told Jeff, "It's time for him to see Kyle's pictures, do you agree?" Jeff said he did and I asked Hank if he was ready. "Ready," he said, and I turned the board around. Hank's eyes widened as he studied the photos. "Whoa..." was all he said. I explained that Kyle had been suffering with PRS for about 4 years by the time he had his surgery and it had progressed all the way to the bone. "So that is what can happen if you don't have the surgery?" Hank asked. "Yes," Jeff told him. Hank quietly studied the photos, looking first at the pre-surgery photos and then focusing on the post-surgery photos. "Kyle looks good now," he said. "OK, I'm glad I had the surgery!"

And that was that! (whew...huge exhale)

The next outing was church. Hank happily embraced our priest, Fr. Soane, who was so pleased to see Hank back from his adventure. That was a day where I prayed in thanksgiving. "Thank you God for getting us this far, Hank is home. He made it through the surgery. Hank is alive!" (not that anything was life-threatening, but you just never know...right?)

After Hank had been home for 10 days, we ventured to his friend, Colin's, house for a playdate. Colin has younger siblings that are the around the same age as Charlie and Lucy, so it works out good for all of us. Add in that their mom, Cathy is a good friend, and it's perfect! I watched the kids as they greeted each other...waiting for someone to mention Hank's face....nothing. They didn't even notice! Later when they were outside, Hank came to me and said, "Mom it is just so hot! I need to take my shirt off." And so he whipped his shirt off and I realized he was wanting to show off his incision. "Does this look like a shark bite to you?" Hank asked his friend. "What is that from?" Colin asked. "My operation," Hank replied. "!" was Colin's response. I handed Hank his shirt, he put it back on and off the boys went, to play more basketball. I breathed a sigh of relief and chuckled to myself at how sly Hank was.

We BBQ'd with friends the next day, and although their kids knew all about the surgery and had seen the photos on the blog, it just wasn't a big deal. They inquired about it when they got here. And they knew not to play rough...for which I was grateful! But after the initial questions, all was forgotten! I love the innocence of kids and how they don't really notice the differences of others....or maybe I should say...they don't care! If only as adults, we didn't lose that ability to just accept people for who they are and not for what they look like...

We've hit a post-surgery milestone. Hank has gotten the OK from his surgeon, to swim. Hallelujah! Summer can now resume! It has been an agonizing wait. As the temperature soared to 107' last week, I turned up the air conditioning and we gathered indoors, to wait it out. Without the relief of a swimming pool, it is just no fun!

I sent Dr. Siebert an email the other day, including the latest photos of Hank. I told him that Hank wanted to know when he can swim. Within a few short hours we had our answer. "Hank can go swimming..." the email read, "All looks fine....Don't worry....let him be himself..." Just a few sentences and we are all smiling.
That night, our friend, Sophia stopped by with dinner for us. We have great friends! Sophia organized a group of friends to bring us dinner 3x a week for the first couple of weeks after we got home. So did she know that I wouldn't feel like doing anything? I told Sophia the exciting news about Hank getting clearance to swim. "Well then you better bring him over and come swimming at our house tomorrow," she said. Hank was so excited!
The next day, we headed over to Sophia's house. And instead of just our kids, she had called some friends and we ended up with 12 kids for Hank to splash around with! Although Hank is the oldest of that bunch, he still had a great time, and I was so happy to see him having fun. After swimming the kids all played together and I was able to have some "girl" time with my friends...something that I really needed! What a nice lazy summer day! (And once again, the kids didn't notice his face!)

Today, we finally made it to the new "sprayground"...a park that also has an area where there are fountains and water features for the kids to run in. Cathy and her kids met us and they all had a ball. Fresh air, sunshine, laughter and exercise. Just what Hank needs.
We've had another exciting occurrence since we've been home. The Hank Chronicles is getting noticed by the exact people who I hoped would find it! I have received an email from a woman named, Michelle, in Jerusalem who in June traveled all the way to the United States to have the same surgery performed by Dr. Siebert. She is following Hank's story and is excited about how good Hank looks. And then there is the email from the woman in Australia who is also following along with Hank's story. She, too has PRS, and is excited to know there is a way to intervene and stop the atrophy's progression.

Two days ago, I received an email from a mom who also has an eight-year old boy with PRS. Her son is having surgery with Dr. Siebert on August 6th. She wrote to tell me that the blog is helping her know what to expect when her son has his surgery. I have written her back and have included my phone number. I know it was helpful to me to have Kyle's mom, Patty as well as another mom on the east coast and one in Ireland, to turn to. I hope that this mom will turn to me, when she needs someone to talk to. Or if she has questions. When your child has a rare illness and it's one in 6 million...when you find another family with it, you need to hold on...there just isn't that many of us!

And if that wasn't enough, even Dr. Siebert has read The Hank Chronicles! And he approves! And maybe, just maybe...he can use it for
his patients too, as they prepare for surgery. I feel like great things are happening and strides are being made in the treatment and awareness of this illness and I am grateful to be on the front lines. Now if we can just get the name, "Parry Romberg" into the mainstream...then we can get the research going...!

I am thankful for Hank. And for him allowing me to tell his story and to share his journey with others. He knows that it will help someone else... And so we will take Dr. Siebert's advice and just "let Hank be himself"...this is his summer...his job is to just have fun and enjoy life. And with the first surgery behind us and the revision surgery 4 months away, now is the time to do just that!


  1. Beautiful post. Thank you for upadating us.

  2. Big High 5 to You and to Hank - I know this is probably helping and making aware alot more people then you will ever know. God Bless.
    Hugs, Terry

  3. Great posting and updates! That was tough to show Hank the pictures, but good that you did! And awesome he can swim and enjoy the Summertime!