Journey Beyond Survival

I've learned a lot about doctors. Chickadee's primary care doctor didn't believe me for 10 months that anything was wrong. She taught me that I just might be right.  Even after the expert has told me I'm wrong many times. The neurologist, our first specialist, taught me that it takes 3-6 months to be seen by a specialist.  And I don't even know if I'll get any answers. The pulmonary doctor taught me that dire predictions don't always come true. Chickadee outlasted her need for a g-tube by 18 months. The developmental pediatrician taught me the importance of primary care.  Even though the former may prescribe, it is the latter that must call it in.  She also taught me that though things may not make sense, I must abide by the system or get run over by it. Gastroenterology taught us that the medicine we need may not be what we want or expect. Today I'm trying to use all of this knowledge. Really really hard. Chickadee and I went to this stu...

Today I'm going to the doctor's for Chickadee.  Three and a half hours away.  I haven't made up her bottles and miss THANG just drove 12 hours yesterday. I've missed my exercise window.  Again. I'm not excited. I also bombed out on Chickadee's birthday.  I was going to have her just celebrate it today when Hubbend and miss THANG were back.  But I neglected to tell the people at church that.  She looked so disappointed, betrayed even. Plus she's worse. She can't roll over very good.  And she's having a hard time sitting up even when propped. I'm really really really sad. *photo by John and Keturah*

I'm teaching in church today. Again. Again because I don't feel ready and I never feel like I'm ready. I'm fighting off a lot of discouragement lately. I feel like I'm running a race and I'm never where I'm supposed to be. I feel like I'm giving my all, yet I'm late for appointments, forgetting things, and disorganized. I used to be so proud of myself for being able to schedule everything and get an amazing amount done. Now the reality is that I need a good twenty minutes a day just staring into space, and another twenty minutes to process what is happening with my daughter Chickadee. Therapy is hard right now, at least home therapy. Every time I do it it reminds me that she might lose the very skills we're working on tomorrow. I know it's worth it. I know she will have better mobility, motility, bone density, lower rates of scoliosis, but I'm still mourning the first and second regressions. My brain just refuses to acc...