To work or not to work

Most people in today's market do not have the choice of 'to work or not to work'. Unfortunately, our family is among that group that requires both parents working, just to make ends meet. Our dilemma arises when considering my employment options. Since Kaleb's diagnosis in 1998, I've tried to manage to work a professional career that required me to be onsite during work hours despite having numerous medical appointments for Kaleb and days where he was not able to physically move his hips. As a parent, I've had to make the hard choices of when to have to abandon my work responsibilities and stay home with a son who was experiencing pain that is comparable to bone cancer pain according to doctors. In my mind, it was the only choice I had.

My last attempt failed miserably and resulted in me receiving the 'firing' email indicating my services could no longer be afforded. Lori....fired. I never thought those 2 words would be said in the same sentence but I have to look at it like a lesson that God needed me to learn. I'm hoping I've been a good, humble student and I can soon go on.

We've worked out the school issues that had plagued us for the last few years and we know that the 'work' situation will also work out fine. It's just hard when you're undergoing the struggle to understand what the lesson is.

I'm definitely still 'working' but now it is in two antique stores (we just opened in the second on June 1st) and still doing web design. All 3 of these opportunities allow me to be there when we can but it is not mandatory. Kaleb goes with me to the stores and he's learning the good, the bad and the ugly of owning your own business. I also applied today to teach classes at a local college, as I've done in the past. I appreciate the 'flexibility' of working for yourself but also still feel the sting of how a chronic medical illness in a family can truly lead you down a different path. Thank goodness Mark has insurance through his work or else the pain would be much worse.

Blessings to all.

Lori

Bright spot of the winter

It's been a very long winter. We've found that the winter is a cold, dreary time and that we are READY for spring. The bright spot of the last month is that we were able to get together with another child who has/had osteopetrosis. She had the 'recessive' form of the disease and underwent a bone marrow transplant and is now considered 'cured'. Before the 'cure', the damage was already done to her optic nerves and she is blind. WHAT AN INSPIRATION.

The cutest thing was Kaleb and her going down a long aisle together. Kaleb maintained himself and did not zoom away with her but carefully guided her down the aisle. I was very impressed and touched to the soul.

We watched her weave a basket! She is a testament that with the right attitude, anything can be accomplished.

I hope that everyone had a blessed Easter. Happy Spring!!!

Lori

Time flies....trials continue

It's almost been a month since I last updated the blog. I apologize for the long delay. Much has happened...more than I can write in one blog. Most important, we have decided to utilize Ohio Virtual Academy (www.ohva.org) which is a public charter school for Kaleb. They provide the curriculum, a computer/fax/printer, state standardized testing, field trips, science fairs and much more. We are expecting we will start Feb 1 but we're still finalizing everything. This will allow Kaleb to stay home when needed due to his pain or inability to get the hips to move. I think it will be quite an adjustment for us since I just started working from home again on Dec 3 but we're game. We'll make it work and hopefully it will be quite beneficial to Kaleb in the long run.

Another interesting note, my right hip has decided it wants to start hurting quite a bit. Yes, I'm scared to death that the same thing that has happened to Kaleb's hips are now happening to mine but I'm going to choose to not worry continuously. I have to believe this will all work out, no matter how it is achieved :)

On a good note, I was contacted by two additional families in the last week concerning osteopetrosis. I think it's very beneficial to continue to communicate with others with this disease to continue to learn.

Blessings to each of you.

Lori