Finding Hope in Hocking Hills

my family

my family

If you read my blog regularly, you know that my family has had a rough year with a  lot of emotional ups and downs. Our lives changed drastically on April 23, 2012 when Joey was diagnosed with LCH (read previous posts under LCH). He has been dealing with a lot of pain again over the last few months and has been in and out of the hospital. He has a constant pain in his hip and gets shooting pains down his leg every few seconds. Everyday I wish I could take his pain for him. I think over and over how I wish it was me instead. But it’s not possible to just take the pain away. So instead, my days are spent helping him with exercises, taking him to a variety of appointments including pain team, acupuncture, massage therapy and physical therapy, talking to doctors via email and phone, researching herbal remedies and trying to come up with any way possible to relieve the pain. And all of this is done while working full-time and taking care of another child. Luckily I have an amazing boyfriend, a terrific group of friends and a fantastic family to help. And as they all keep reminding me; I can’t take care of anyone if I don’t take care of myself. So that’s exactly what I did this weekend – I took care of myself with a little help from that amazing boyfriend Nick. We stayed in aquaint little cabin in Hocking Hills, Ohio. I had heard about Hocking Hills for years but had never been there. This was the perfect time to try it out since I was in desperate need of mental break and Joey would be spending the weekend with his dad. We arrived Friday late afternoon, made dinner and enjoyed the hot tub. We got up early Saturday and set out for a day of adventure.

Rock Formations at Hocking Hills

Rock Formations at Hocking Hills

Nick on a cool tree

Nick on a cool tree

We did a three-hour zipline tour of Hocking Hills. It was amazing! It included 10 ziplines and ended with rappelling down. The first two ziplines would be like the bunny slope when skiing. Then we started with professional zips. We flew through the sky from tree to tree landing on platforms. I don’t even have words to describe how amazing this was. I have dreams all the time that I can fly. This was the closest I will ever come to making that dream come true. It was worth the cost and is a memory we will always have.

After that we headed to Old Man’s Cave and ate our packed lunch at the picnic tables. We explored the cave and small waterfalls. As I traveled down to the cave, I felt as if I had entered a different world. The rock formations were breathtaking and I have always been fascinated by waterfalls. We spent the evening relaxing in the hot tub again. It was so peaceful since the cabin was secluded in the woods.

Nick holding up Old Man's Cave

Nick holding up Old Man’s Cave

After dinner and a small storm, I stood out on the deck of our cabin with a feeling of peace, looking at the mysterious sky. The sun rays were trying to peek out from behind the grey clouds. As I stared at its glory I prayed for my son to be healed. I hoped that when I returned home I’d be told that his pain would be gone. I thought to myself that I’d be willing to give up all the inner peace and happiness I was feeling right at the moment if my son could just be pain-free.

After having breakfast at the cabin Sunday morning, we headed to Cedar Falls. I didn’t think I could ever see anything more beautiful than Old Man’s Cave but WOW was I wrong. I was immediately drawn to the waterfall. I slipped on flip-flops and headed out. At first I just put my hands under the fall but realized I wouldn’t be satisfied until I stood under. So denim shorts and all, I stood under the water letting it fall on my head and off my shoulders. It was FREEZING but I found it majestic. We managed to find ourselves in some restricted areas where we climbed on top on the waterfall (Children: do not try this).  It was unbelievable to be standing just a foot away from where the water falls and to look over all the people we were just standing with minutes beforehand.

Under the waterfall

Under the waterfall

The view from on top of the waterfall

The view from on top of the waterfall

The Water Fall

Enjoying the moment

Enjoying the moment

We made our way back to the car and after driving by a few areas we wanted to see, we headed home. We had about 48 hours of an incredible escape. An added bonus was that our phones did not work at all in Hocking Hills (we let family know where we were staying incase there was an emergency) so neither one of us spent any time texting, checking Facebook or on the phone. This allowed for a complete break from the outside world. Not only did I have an amazing experience on my first trip with Nick but I was able to get the mental break I needed and feel refreshed.

As I write this, Joey is in the next room screaming out every few seconds. I so wish I could take that pain for him. I can’t do that but at least I can take care of him. Joey loves reading your messages so be sure to post positive thoughts here.

P.S. If you aren’t following us on Facebook, you should be!

P.S. S. I am open to all holistic ways of treating Joey since traditional medicine doesn’t seem to be working. If you have suggests outside of acupuncture and medical massage, I would love to hear them. Please post in the comments.

Home Sweet Home

my family

my family

As we pulled in the driveway and unloaded the car all I could think of was sleeping in my own bed. I lugged our bags up the steps, sent Joey up the stairlift, got him settled on the couch with a cartoon and then collapsed in my bed. A few hours later I feel like a new person. I would be looking forward to a good night’s sleep in my bed tonight but instead, I will be sleeping on a bus with a bunch of middle school kids. Wait, I should rephrase that. Instead, I will be losing my mind awake all night on a bus with a bunch of middle school kids.

Oh the things we do for our children! We are leaving tonight for Washington D.C. for the 8th grade trip. We will change in a gas station tomorrow and start touring the city immediately. I won’t see a hotel room until late Thursday night. Attention other 8th grade parents: What were we thinking when we signed up for this trip????? I guess we were thinking we wanted to have this time with our kids.

I’m sure you are all curious as to how Joey is doing. He’s home. He can walk. He’s dragging his leg a little but he can walk And it doesn’t hurt. I don’t know if it was the steroid injection, the physical therapy, the massages, the acupuncture or a combination of all but he can walk without pain and without assistance! We decided to do outpatient physical therapy instead of inpatient rehab. He will have acupuncture, pysical therapy and a massage on Thursday. I really think that we just overdid on it spring break. His body hadn’t done that much physical activity in a long time. Now I know to watch the amount of activity and to get him a massage or other treatment immediately if we do a lot. He’s also going to increase his exercises at home to try to strengthen the hip and leg.

I really don’t know why we had this setback (and neither do the doctors) but we do know that it’s NOT LCH and that’s what’s really important right now. Although I know with my network of friends and family and our doctors at Cincinnati Children’s Hospital that we could defeat Histio again, I really don’t want to take that battle on. And our fight with Histio has prepared us to deal with almost anything else without blinking an eye. We got this!

Joey loves seeing your comments so please leave words of encouragement. Oh and wish me luck on this bus trip!

Be sure to check out Raising2tweens on Facebook.

P.S. If you are on this trip with me, let’s avoid talking about Joey’s condition. I want to focus on Andi for the next few days. She deserves it!