Don’t Feel Sorry For Us; We’re Pretty Lucky

Between Joey having Langerhans Cell Histiocytosis, residual pain from the surgery and his PTSD, as well as Andi’s migraines, along with a recent concussion, we often find ourselves visiting the doctor and the hospital. Friends and family constantly make comments to me like “if it wasn’t for bad luck, you guys would have no luck at all,” “life is so unfair,” “you guys can’t catch a break,” “your family has had it rough” and “you must fund your doctor’s vacations.” The thing is though, well other than the last one, I don’t feel like any of that is true.

My son was diagnosed with a life-threatening cancer at 10-years-old. We were told he may never walk again. At 13, he has beaten LCH, runs, walks and rides a bike like a normal kid and even performs in Circus Mojo doing a variety of acts that use his legs. He didn’t die. He can walk. He is funny and caring. I think that is pretty lucky.

joy wheelchair

After surgery in 2012

joey german

2014

 

Andi has suffered from migraines since she was 9 with no real explanation. She will be 16 this month. That sucks but they aren’t caused by epilepsy, a tumor or a serious disease. They are most likely hormonal and will eventually be under control. That is lucky.

Andi has suffered from a concussion since April 19 and has had a heck of a time with it. She was hospitalized for two and a half days, she can only attend half days at school, she is nauseous all the time and definitely doesn’t feel herself. A girl, who was less than five feet from Andi, kicked the soccer ball so hard that when it hit Andi in the face, it knocked her to the ground. She didn’t lose consciousnesses. The pediatrician told us the only thing that would make this concussion worse is if she was knocked unconsciousness. I think the fact that she didn’t is pretty lucky. When neurology admitted her at Cincinnati Children’s Hospital, they told us she could be there two to six days. She wasn’t even there for three full days. That was lucky.

my cutie kids

my cutie kids

She is still dealing with the concussion. It is hard on our family. She can only go to school half days, which requires a lot of juggling. However, we have awesome friends and family who are helping us with that. We are so lucky to have those people in our lives.

We are also lucky to have Cincinnati Children’s Hospital, one of the number one hospitals in the country, 15 minutes from our home. We are lucky to have one of the top two LCH doctors in the country 15 minutes from our home. We are lucky to have one of the best children’s neurology teams in the country 15 minutes from our home. Really, what more could we ask for? Well, maybe for better health insurance or someone to pay our medical bills. Ha!

We’re good. Don’t feel sorry for us. We are pretty lucky!

family shot (2)

Taking a Break from the Worry

As parents I think we forget to take time for ourselves. My family has been a lot over the last six months (See Catching Up).There isn’t a day that goes by that I don’t worry that the LCH is going to reactivate in my son Joey. There isn’t a day that goes by that I don’t worry how both kids are adjusting to our “new normal,” how Joey’s recovery is going or the endless amount of medical bills that have come along with this disease. In addition to that, I worry about the normal things like the mortgage, my job, laundry, cleaning the kitchen, carpools, my friends’ kids (especially one particular one right now – See Pray For Clay), if the kids are eating healthy enough, etc. It seems to be an endless amount of worry.

My worry was so intense two weeks ago that I literally had a migraine for six days. I would wake up and go to bed with it.  Nothing seemed to help. I tried pain relievers, lots of sleep, prescription medicine, acupuncture, massage and chiropractor. Everything would help or dull it briefly but nothing took it away entirely. I know it was a result of grinding and clinching my teeth, which was a direct result of worry.

I try to do little things for myself like get a pedicure every three to four weeks, hang out with friends or have a glass or three of wine. But I never do much more than that. Honestly, I’m very anal and like to have everything in my life planned. Yes, I’m one of those… a PLANNER. It even drives me crazy. I take months and months to plan vacations. I will review hotels for weeks before making a decision. My planning addiction is what makes me volunteer for everything – Girl Scout Leader, Soccer PA, Fundraisers, etc… I am in control if I’m the one planning it. If I plan it, I know what to expect. Yeah, I have issues.

Last Saturday I woke up with a dull headache but had to do a live interview for my employer. So I dragged myself out of bed, got ready and headed to the studio. I had plans to meet my friends Amy and Christine for a pedicure after. On our way to the salon, Christine mentioned there was going to be a meteor shower that night and how she would love to see it. She also mentioned that she had never been to Red River Gorge. Next thing I know, we are heading home from our pedis to pack our bags, grab our puppies and head to the Gorge. I maybe spent 10 minutes packing. I didn’t even take a flashlight.

We loaded the car and were on our way. Once we got to the area, we started making calls and found a cabin. We went on a hike that evening and the next morning. We spent the evening watching the Meteor Shower and seeing at least two dozen stars shoot across the sky. It was amazing. We also enjoyed a soak in the hot tub and just relaxing on the deck of our cabin while our puppies played. Although my children and everything else was in the back of my head, it was so incredibly relaxing.

I felt completely reenergized after that 30-hour trip. My migraine was finally gone and I even felt like a better mom. This little trip reminded me how important it is for parents to take time for themselves. We need to get away from the stress, take a break from the kids and recharge. I am going to try to make a point to do something for myself every couple months. It might not be an overnight trip every time but it will be more than a pedicure. What have you done lately to recharge?