Back of the Bus

It’s a bumpy ride at the back of the bus and no one knows that better than we do. We have been riding the back of the bus for while now. You must remember what it felt like to be at the back of the bus? No supervision, all noise and chaos. You can’t see the twists and turns and bumps and valleys ahead of you. It’s all surprises at the back of the bus and if you are not careful, you end up wearing your lunch.  Many people associate the back of the bus with segregation, isolation and rejection. The back of the bus is all those things as well. We identify with those feelings well. It has been an on-going emotional journey, and though we keep waiting for our stop, it appears that the words, “Are we there yet?” will never get us home. 

Let me start by saying, I hate all pictures of me. Especially when I feel the way I do right now. I recognize however, that I am unable to face my feelings without first facing myself. So here it is, raw me. How did my hair get so dark, by the way? I was born blonde. Hmph. Oh vanity.. 

Since I last wrote, there have been a lot of bumps, valleys and turns. Pepper’s condition remains the same, though we did mysteriously have ten (10) consecutive seizure-free days. YES 10! I attended a focus group for caregivers of people with epilepsy, where I met a wonderful mother who taught me all about Sturge-Weber Syndrome (a rare neurological and skin disorder, characterized by a port-wine stain on the face). Please Google Sturge Weber and learn about it. Get educated. It takes only minutes, and it’s free.  My husband and I presented Pepper’s story at Erin Oak Kids’ new local site announcement where we got to meet so many lovely kind-hearted people.  Pepper celebrated her 2nd birthday, and as I mentioned before, we had 10 glorious seizure-free days.  I have lots to tell you about the events mentioned above, so watch for them in up-coming posts.  For now, I will just give you the basics and let you know how we’ve been. 

Some of you have been asking about us, and I want to say thank you from the bottom of my heart. It is very humbling to know that we have made such an impression in your lives. We love you all and send you all some smiles and warmth. 

Pepper has been having some challenging months. Though we had a very rare break from seizures recently, the months between my last post and this one, have been tough. Pepper was averaging 3 to 4 seizures a day, with very few breaks and a few clusters of 5+ seizures. We would be lucky if she had a day off in between. She was also in the hospital again with respiratory issues. It’s unclear whether or not it was pneumonia. Also a series of chronic ear infections, and fluid in both of her ears has resulted in Pepper needing to have drainage tubes put in both her ears. Let’s hope the tubes stop the infections and get the hearing and speech kick-started. It would be a dream to hear her start to talk. Pepper’s latest seizure count is somewhere in the ~650 mark.  Still, despite these set-backs, she keeps on getting stronger everyday and that smile of hers still lights up the darkest of days. 

The boys? They seem to be doing just fine. Both back at school. One teaching at his former high school (on a contract) and the other just starting junior kindergarten. Anyone know where a super-talented, incredibly patient, highly intelligent, enthusiastic and very motivated high school math/science teacher can get a permanent teaching job around here? Anyone? 

On a personal note, if you have been looking for me on Facebook and haven’t been able to find me. I didn’t delete you. I deleted myself. It’s not you, it’s me. I needed some time. Most importantly, I needed perspective. Don’t get me wrong, I love reading about how my friends are doing and what pushes their buttons. However, there comes a time when it’s more important to tune out the noise and focus on what’s right in front of you. That time for me, is now. That game that we were playing together? I wasn’t playing to win, I was playing to be with the friends I love, and to enjoy the moment. Those lyrics I was quoting? Those were there to inspire and lighten someone’s day. Somewhere along the way, the wires got crossed, and It stopped being fun. In fact, it was starting to hurt. A lot. So I decided that for the preservation of my heart, and to conserve my tears for the joyous moments we celebrate with Pepper, enough was enough. It was time to turn down the volume and pay attention to the road ahead. Do I miss it? Honestly, yes I do. I miss how easy it was to communicate with people I would not normally have access to and also with those who live so far away, and those who may live next door, but we just can’t seem to run into each other. Will I go back to it? Maybe. But not today. Today is for Pepper. 

We haven’t moved into our house yet. I know, I know. What’s taking us so long? Remember what I said about being at the back of the bus? You feel every bump in the road. We’re close though. We will for sure be in there for Christmas. If you’re not busy, stop by for a tea, or an egg nog, or something to warm your soul. We’d love to see you. To give you a big rib-squeezing hug, and hear all about what you’ve been up to. 

FInally, the work situation.. I am still unemployed and still searching. I have been spending my busy days with appointments and consultations and assessments. Driving, driving and more driving. I must admit though, being at home has given me the rare opportunity to be that stay at home mom I wished I had as a child. I even got to go on a field trip recently with my wee man. Take a wild guess where we sat on the bus?