A long week

Monday saw the start of school for Emily and Tom so our routine changed dramatically. I went to great lengths with both children to make sure they were prepared so things have been running pretty smoothly.

Emily started 7 th grade with great support from her new school. I can't fault them in any way because everyone has been bending over backwards to make sure Emily is taken care of. She loves 7 th grade so my decision not to fight to keep her in 6 th has so far been a good one.

We've had a few teething problems but thankfully school staff have worked with me and I feel comfortable dropping her off at school each day. Teaching Emily's teachers to understand this disease hasn't been much of a problem but helping them get the balance between care and direction is a challenge. Seeing a child so young with so many challenges is heart wrenching but in order for Emily to get her anywhere near her old life back we have to push past that and be encouraging. I hope in time this will come. On Tuesday Emily started to bleed from her belly button port and it freaked out most people at school. This is a prime example of what I mean because yes, it's nasty. Hey, to me it's nasty BUT come on lets let the antibiotics do their job and move on. Sitting staring at it is going to take focus away from school so we have to push past the desire to wrap Emily in something snuggly and tell her that everything will be OK.

I have the urge. My urge to wrap her up and run away where no one can hurt her is so strong at times it's overwhelming but I learned several months ago that given the chance and encouragement Emily can push past this disease and succeed and that's what she needs to do if she's ever going be beat this.