|First day of school...Last day of school...grow much?|
Luckily, I had received a call from Hank's surgeon, Dr. Siebert, the week before. "Hank doesn't need that bone surgery," was the first thing I heard, "He is too young, and even then, I don't know if he will ever need it." I could feel the weight of the world start to lift off my shoulders. "But what about the other people who have needed bone surgery?" I asked, "Isn't Hank going to need it too? I know his cheek bone has deteriorated." Dr. Siebert explained, "Hank was better off than most, when he came to me, we caught it earlier...Yes, his bone has deteriorated, we know that...fixing the tissue is to mask it...but I don't know if he will ever need bone surgery...and certainly not now." I couldn't believe my ears! Just what I wanted to hear..."Bring him to Wisconsin," he said, "We need to lift the flap and remove some tissue, it's weighing down his eyelid." I took a deep breath, "Hank does not want another surgery and Jeff and I don't want to put him through anything unless it is absolutely necessary."
There was a pause...and then I heard the words that squeezed my heart..."Hank is going to be 13. These are the years that matter. The years that form who we are. Hank deserves to feel confident...to look his best. Hank deserves that chance. We owe it to him...I owe it to him... I owe it to this kid to give him the best chance I can. We need to do this for Hank." My heart sank. I knew he was right... He then went on to talk about Hank's eye and all the things that could go wrong if we don't do the surgery and the tissue continues to pull his eyelid down...won't be able to close his eye, resulting in eye ulcers, dryness, and many other issues. And so that was that. Surgery on June 19th...now how were we going to tell Hank?
The next week was crazy busy, with me working long hours and putting on three events that week. I only saw Hank for an hour before school and knew that I couldn't tell him then. And so we waited all week to tell him. It was painful...and worrisome...how would he react? We finally found our chance that weekend...I had to work on Saturday, so Sunday after Mass would have to be the time. As Jeff and I made our way up the stairs to Hank's room, my heart was heavy. I rehearsed in my head what I would say. Hank was sitting on his bed, playing a game on his laptop. He looked up when we came in and I saw the questions on his face. Must be serious...both mom and dad in his room...and wanting to talk!
Jeff sat down next to Hank and I sat on Charlie's bed across the room. We started off by telling him that he would not be having bone surgery. "Oh thank God!" he exclaimed as he looked up at the ceiling in relief. "but..."said Jeff, "you do need the tissue surgery in Wisconsin." Hank's face fell..."NO! NO NO NO!" He said in a voice laced with anger and disappointment. "We are so sorry," I said, "but we have to do this...you need it.", and went on to explain why. Hank sat silently and listened...and then the tears started to roll down his cheeks. He tried to wipe them away before we saw them, but they were too quick and there were too many. "No..." he said quietly. I felt terrible. This was awful. It was so much easier when he was little. He didn't quite understand and he didn't seem to remember the surgeries. But now...now he gets it...and he remembers...and I don't blame him...I wouldn't want it either.
I watched his face and could see the range of emotions...anger, disappointment, sorrow...and then resignation... "OK. Fine. I'll do it," as he wiped the tears away and sat up. And that was that. I knew he was angry and hurt...but he did not want to talk about it... he wanted to be alone. We left the room and went downstairs...and then it was my turn to cry...
I sent Dr. Siebert a text..."We just told Hank about his surgery. He is very upset. Would you be willing to talk to him about it?" The response came back right away..."Absolutely!" He called that night. "Hi Terri, It's Dr. Siebert. Is Hank available?" (I love this man) I handed Hank the phone, "Oh Hi Dr. Siebert!" Hank exclaimed when he heard the voice on the other line. They talked for a few minutes, and I heard Hank say, "OK. See you in a few weeks." Whew...he sounded OK. Hank handed the phone back to me..."I told Hank not to be mad at mom and dad," Dr. Siebert said happily, "I told him to be mad at me...it's not mom and dad's fault, but you need to have this done. He'll be fine now." Once again Dr. Siebert leaves me speechless..."See you in a few weeks!" he said, and we hung up.
|Last day of 7th grade|
Today is the day of our fundraiser. "Pizza With a Purpose". It's our first one since moving back to our hometown. Wish I had time to really plan one and advertise. We put this together in a day...but with our kids' amazing school, and the radio station running a PSA about it, it should go well!
Little miracles have been happening this whole last week. A letter came from the State Controller's Office that said a local bank had lost funds of mine. I went to the bank and found that it was just enough to cover the plane fare to get us to Chicago and back...the radio station recording a PSA for Hank's fundraiser...unsolicited all about 12 year old Hank Gibbs and his fight against Parry Romberg Syndrome!...and last night...last night put me over the edge of stunned gratitude...
Hank is not the only one having surgery next week...13 year old Kristina, from Atlanta will also undergo surgery for her PRS. Mom Karen and I have become close friends over the years...and saw an opportunity to meet in real life and for the kids to have someone to go through the surgeries with. I had put out note on Facebook, asking if anyone had an "in" with the Chicago Cubs...we will be flying out of Chicago and would love to take the kids to a game...but tickets are pricey and our money needs to go towards the necessities...
|Our surprise visit with the McQuillen Family in NYC 2009|
I have no idea what today will bring...The fundraiser starts at 11:00 and goes all day. I will be running back and forth from work, so that we can be there at lunch and again at dinner. I have high hopes that Hank will have some friends there...we will raise some money for Hank...and raise awareness for this disease does not define who we are...but has definitely changed our priorities and opened us up to things we never imagined...good and bad. Today is all about Hank...strong and stoic Hank...facing surgery #5 with grace and courage...
* Note: I started this blog years ago, to keep our family and friends informed on Hank's illness and progress. This is a disease full of unknowns...unknown cause, unknown progression and it affects each person differently. Although we wish Hank did not have to have surgeries, the alternative is much worse and we are extremely grateful we have Dr. John Siebert in our corner. I can't imagine what Hank's life would be like if we never had the micro-vascular free flap tissue transfer. These surgeries give Hank the normal life we have prayed for and we would not change a thing!