Between the Lines

We understand there are a few misconceptions based on the content we post. I want to take a minute to clear up a few things.

First I would like to explain how this content makes it to the site. From day one Tim and I decided that the only way we were going to be able to get through this is to focus on the positives. Some days are a lot harder than others. We are more than aware of the severity of the situation – and not delusional in any way. Instead of dwelling on every setback, bump, hurdle, or whatever you choose to call it, we decided that we would acknowledge the challenge then move forward. We have put all of our energy into celebrating EVERY victory, no matter how small. We cherish each moment we get to share with Casey. When we post to this site you have to keep that in mind.

In life with a special needs child there are always challenges. If you think of life as a road you can say that life with a special needs child would be full of bumps, potholes, hills and mountains. That road may not even be paved. Life with a healthy child is more like a major freeway. Smooth with a few potholes, hills and maybe even a mountain or two. When driving down a freeway, if you hit a bump or pothole you notice it. When driving down a dirt road there are so many bumps and potholes you probably start to just drive through them, and only notice when you hit a really bad patch. Sure, when you get to your destination you are aware that you traveled a bumpy road. But you travel it so often that when you are asked how the trip was all you can think to say is “Fine, nothing eventful.” Or you may even go the other direction, as we often do, and point out the positives. “Great, the weather was nice. We were even able to tune into our favorite radio station most of the way.” If we don’t spend time talking about the bumps, it does not mean that the road was paved and smooth. You might say we have been off road for most of our travels.

When we were in the NICU with Casey (back in the very beginning), Tim and I really had no choice other than to adopt the positive approach. The doctors actually pulled me aside and where legitimately concerned that I was delusional for being so positive. I explained to them, the same as I am explaining to you all now, if I can’t hold on to the positives, I won’t make it. I had to explain to them that yes I know my child is very sick. I had to explain to them that I know I could (and still can) lose her at any moment on any day. I had to explain that I know that my daughter will only get worse over time. And I had to tell them when the time comes I will somehow recognize it and accept it. These were not things I wanted to say, but this was/is our reality. I know it, and Tim knows it. But we don’t want to waste the time we have with Casey dwelling on those things. We want to make every moment count and as wonderful and positive for Casey as we possibly can.

Just as we focus on enjoying and celebrating life with Casey, we want others to do the same. We don’t want people to hear her story and feel sad or pity for her or us, or “glad they aren’t us” (yes, that’s a quote). We want people to hear about her and feel proud, and lucky to know her. We want people to see her for the amazing fighter that she is. And we want people to see all of her achievements and help her celebrate them.

I know sometimes reading this site you may get the impression that Casey is doing great. And she IS, but it’s all relative. Maybe I should have posted this explanation earlier. We hold hope that she has a long and wonderful life. We feel so incredibly blessed to have her in our lives. She is the most amazing person I have ever known. Our hope is that everyone in her life knows how lucky they are to be part of her amazing journey.

Also, I need to explain Make-A-Wish. We were approached about Make-A-Wish, we did not go looking for them. The medical field has come so far that a lot of families do not get “you have exactly this much time” anymore. Some do, but many are labeled with “Life Limiting” instead of “Terminal”. Make-A-Wish supports both types of cases. To be part of Make-A-Wish, a child’s doctor sends medical details showing the child is in one of these categories.

Life limiting is a term most people may not know. I am breaking all of our rules to actually go into this right now. “Life limiting” or “medically fragile” or “complex chronic illnesses” are terms that are often used with severe cases. These are terms that are used when discussing patients with consistently deteriorating medical conditions. What does this mean? Well, in short it means that every day Casey is getting worse, and both her quality and quantity of life is limited by her conditions.

We focus on the positives, and we post the positives. If you read closely (between the lines) you will see the positives are things like personality (likes, attitude, etc), learning (switches, cries, gestures/decisions, etc), and minor medical (got over a cold w/o hospitalization, avoided aspiration during MRI, etc). The major conditions – the areas that we and the current medical community have no control over – are getting worse. I don’t want to get into a lot of details here (I can’t), but I will try to explain this a little.

Each time Casey is sick, each time she is hospitalized, even when she grows, she gets worse. Her pulmonary, GI and physical development are deteriorating (sometimes slowly, sometimes quickly) and there is nothing we can do to stop them. Even when she gets out of the hospital or gets over a specific illness, she is not able to quite make it all the way back to where she was before. Eventually she will no longer be able to breath and/or eat. Every time we go to a doctor appointment they point out to me that she is worse than the time before. I don’t post those details. When I say an appointment went well, it means the doctor did not push to admit Casey to the hospital or hospice care. It means that Casey is doing as well as can be expected for her condition.

If Casey’s doctors did not think that she was in the high risk category she would not be eligible for Make-A-Wish. If they thought she had lots of time they would have waited. Make-A-Wish knows that their kids have good and bad times. When a child gets into the program they move as fast as they can, because they want the child to be in a “good time” in order to fully enjoy their wish. Also, regardless of life limiting or terminal, the truth is that any of these kids can go at anytime. That is not the plan, but it is a real risk and Make-A-Wish knows this. For everyone that has been reading Casey’s blog and is confused “I thought she was doing great, why is she getting a wish?”, I hope this helps explain that.

We are so thankful to have so many people follow Casey’s story. There are more people pulling for her in good and bad times than we could have ever hoped for or imagined. We are sorry if our postings have mislead any of you. I hope that with this explanation you can understand where we are coming from.