Showing posts with label Wisconsin. Show all posts
Showing posts with label Wisconsin. Show all posts

Monday, October 8, 2012

The Journey to Green Bay and the Miracles Along the Way

Day three post-op and we were ready for a break!  We took Saturday and made it a day of rest. It was cold and cloudy out...the perfect day to stay indoors.  Hank was still feeling shy about his swollen face and not able to open his left eye, and really just wanted to stay put. Lucy and I had caught colds, so we needed a day of rest as well. Hank and brother Charlie played video games while Lucy colored. We watched movies, read books, caught up on laundry and relaxed.

On Sunday, we got up early (early for us, that is...) and went on a road trip. We couldn't let this trip just be about surgery! We find that it's easier, if we do fun things too...then Hank tends to remember the fun stuff and not the surgery itself. So we headed up to Green Bay. It was an unfortunate start of the day, as I got hit with the stomach flu that morning...but we had a plan for the day and nothing was going to stop us from going!

About a year ago, when Dr. Siebert said Hank needed another surgery and we knew it was going to be in Wisconsin instead of New York, my sister Patty sent me an email with a link. In it she wrote: "This is why you will go to Wisconsin." The link was to a site for "Our Lady of Good Help" . It's a place where the Virgin Mary  appeared some hundred years ago and is now a shrine...it's the site of healing and miracles...and since we want Hank cured...well...we want a miracle...we just had to go! It was almost a three hour drive through pastoral Wisconsin. Very serene with dairy farms, orchards, with the leaves changing colors and more. Following the signs to the town of New Franken...and down a long country road dotted with dairy farms, we found the shrine. Made up of just a few brick buildings, it didn't look like much...a church, a gift shop, a small cemetery... We got out of the car and walked around...not sure where to go first...I saw a sign that said, "crypt"... That sounded a little ominous...and then an arrow that read, "shrine."
We headed down the stairs into a dark room, and there in front of us was a lovely scene. A beautiful statue of Mary, Our Lady of Good Help, brightly lit and surrounded by bouquets of flowers, flanked by statues of kneeling angels, stood in the middle of the room. The only other light came from the numerous candles around the room. I was immediately awestruck and in tears as I knelt in the silence of the room, asking for the miracle we so desperately want. Hank went up and knelt in front of the statue, soon joined by Charlie and Lucy...all three with hands clasped and heads bowed in prayer. For me it was that last-hope kind of feeling...the one where you just want to prostrate yourself on the floor and beg...BEG for your child to be healed!

Hank was quiet and serene...just taking it all in. We made our way to the gift shop, to grab a few remembrances. As I paid for our purchase, I was talking with the nice ladies who run the gift shop, telling them that we came all the way from California. They inquired about Hank's surgery and I filled them in. One lady disappeared into the back room and came back carrying two items. "These are relics," she told me, "one from St. Theresa the Little Flower and one from St. Maria Goretti." Now this might not be amazing to anyone else...but to me, it was astonishing for two reasons...one is that St. Theresa is my patron saint...and to come by a relic of hers is quite unusual...but two...our church was started a few years ago and just this August, we completed and moved in to our new church...called...St. Maria Goretti's! So for me...this seemed so significant! The woman explained that the relics had belonged to a woman who passed away and her family left the relics with the shrine. I had Hank hold the relics and he blessed himself with them. (extra prayers!)

As we left the shrine, we saw a dog sitting in the parking lot. "Here boy!" Hank called as soon as he saw it. The dog turned and saw Hank...stood up...wagged it's tail and made a beeline for Hank. We have a border collie at home named Maverick...and the kids are really missing him. As the dog came closer, I realized that this too was a border collie! The dog came right up to Hank, rolled over onto his back and waited for Hank to rub his belly! All three kids converged on the dog, petting him and scratching his belly. When he had enough, the dog rolled over and only had eyes for Hank. All he wanted to do was reach Hank's face and smother him with dog kisses. Hank's face lit up with such sheer happiness...an amazing sight!

We finally gathered up the kids and headed for our next stop...Green Bay...home of the Green Bay Packers! You can't go to Wisconsin and NOT go to Lambeau Field! It's the Holy Grail of Football! I expected a big city like San Francisco or something...but it's not...no skyscrapers...and the stadium is truly in a neighborhood! The parking lot looked deserted...the Pack had an away game that day...but we went ahead and climbed the steps to the stadium anyway.  From a religious shrine to a sports shrine...that's how we felt. So excited to be there! Lucy and I fell behind as we hit the ladies room...Jeff and the boys were at the info desk, talking to the woman at the counter. The next thing I knew we were following her from the atrium to the actual stadium! Apparently, she told Jeff it was closed...but then taking a look at Hank's sad sutured face and hearing we were from California...she called security and got clearance to take us out. (A football miracle? I think so!) It was AWESOME! Jeff looked the happiest of all as he said, "Take a picture of me!" with arms outstretched and Lambeau Field in the background.

We thanked our tour guide profusely, sad that we missed the real tour where they take you through the tunnel...but so excited that we actually made it there and got to see the stadium. As we drove the three hours back to Madison...I took a turn for the worse. I had made it through the day and now the stomach flu was taking over. But I was so grateful for the day of mini miracles...smiles on everyone's faces...Hank getting some solitude in prayer and the excitement that only a great sports' institution can bring! We still had to face getting stitches out the next day ...and Hank was still swollen and not feeling very well...but for one day, it was nice to get out and enjoy the Wisconsin countryside!

The next morning, Hank exclaimed, "Mom! I can open my eye!" Finally! After five days...he could open his eye. What a relief! "I prayed that I would be able to open my eye and see," he told me, "at breakfast I thanked Our Lady for answering my prayer." I can't help but think all our prayers were answered...there are no coincidences...and all the little things that happened at the shrine tell me that our prayers were being heard. Maybe they aren't answered right away...but they are answered!

Since I am talking about shrines and statues..etc. I do want to add something...We do not worship statues and we do not pray to anyone other than God. A statue is just like a photo of someone...a remembrance ...and if I ask you to pray for Hank...why wouldn't I ask those who are already in heaven to do the same? Jesus loved his mother and would do anything for her...so when I ask Mary to cure Hank...I am asking her to intercede on our behalf, to her Son...that is all. Our journey over the last few years with Hank and his PRS has had the highest of highs and lowest of lows...but through it all we know that God has shown us the path...

Monday, October 1, 2012

Heading to Madison!

Well, here it is...the early hours of the morning of October 1, 2012.  In just a few hours, we will be getting the kids up for the drive to the airport. I know I should be in bed...but I am to anxious to even try.  Maybe a 30 minute cat nap...

Fr. Terry blessing Hank.
This is a new adventure for us...and we are all a little excited...and a lot nervous!  Hank will be at the American Children's Hospital in Madison, Wisconsin this time.  His surgery is scheduled for Wednesday, October 3rd...and as the date draws closer, the more emotional I become.  It's funny...I know Hank has Parry Romberg Syndrome...and it's on my mind every single day...not the first thing on my mind anymore...but still...it's there...always.  But for the most part, my focus is on raising awareness, talking to other families with PRS and fundraising for Hank's trust in anticipation for surgery.  And we have been so busy with the golf tournament fundraiser. But now that is done and we had to quickly pack and get ready to go...now the realization is hitting me...Hank's having surgery! I knew that...I really did...but knowing what's ahead just breaks my heart for that kid. And then there's Hank...stoic and strong on the outside...but I know he is nervous on the inside. I see him sitting pensively...and I know he is thinking about it. He doesn't say much...but I know.

Just the other day, Hank asked me about his condition. It was the first conversation we've really had about it.   Hank was just seven when he was diagnosed and we didn't tell him much. Over the years, we talk about it here and there...but now at age eleven and in the 6th grade...he understands so much more!  He was sitting at the kitchen table, doing homework as I cooked dinner. (I use the word "cooked" loosely...)  Turning around to look at me he asked, "Hey Mom.  Do I still have Parry Romberg?" Ugh! Caught me off guard. What do I say? I looked at him, "I don't know. I don't think so...but I don't know for sure," I answered. "So how did I get it?" he asked, "did I catch it?" I ponder the question and think perhaps a classmate asked Hank the same thing. "You didn't catch it," I tell him, "we don't know how you got it...maybe from an injury, maybe the vaccinations triggered it...something triggered it in your body...and no one knows what...yet." He looked sad...It IS sad..."so...how do I get rid of it?" Now there is a question that I would really like answered!! I explained that there is no known cause and no known cure...and the micro surgery that he has had is our best option to stop the progression. Hank sat quietly for a moment..."OK. thanks." and turned around to finish his homework.

I imagine that Hank has a lot of questions...I just wish I had better answers!  But with that said...I think it's good that Hank is asking...facing another surgery is daunting...and I want him to know that we don't take these decisions lightly. But we know we are doing the best thing that is available to us. Hank is in such good hands with Dr. Siebert. I can't even imagine what his life would be like right now, if we had never done that first surgery!

Hank got to enjoy the golf course!
It's been a busy few months...we just had the "Inaugural Helping Hands for Hank Golf Tournament."  We had such a great time with the volunteers and golfers who came out to enjoy the day at the beautiful Rancho Murieta Country Club.  Thanks to our volunteers: My sister; Barbara Arthur, Anne Fiksdal, Danielle Morris, Michele Williams, Lori Alaniz, Beth McGaughey and Teresa Berry. I couldn't have made it through the day without you! And thank you to our donors, sponsors and golfers too! We learned a lot and can't wait to start planning the next one. Well...ok, so I can wait a little while...at least until we get back from Hank's surgery!

Maverick going off to "Dog Camp"...
Speaking of...looks like I will be needing to wake the family in just a half hour! Guess I better go get ready to go! I will update the blog as we go!