Stability

When I started the job here in Australia it involved travelling on Outreach trips four times a year for about a week at a time.  I knew at the time that I was going to have to set up some things to help Levi feel stable in his place in the world while I was gone.  He would stay upstairs, which fairly rigid rules and little flexibility.  I started by writing him notes.  Initially the notes were just his name and a love heart because he couldn't read at all.  As he got better at reading the notes got more complex and the vocabulary more complicated.  Still he loves the notes.  He has a secret stash of them all somewhere.  He won't let me throw them out.  That and the phone calls morning and night have made those trips work for both of us. 

Now it has gone full circle.  He is writing me notes.  He puts them all over the house on Post it notes.  I find them at different times and I love it so much.  I now have my secret stash of love notes.  I love that you can tell his age by the backward 's' and 'f'.  I love that he writes them to 'Sue' because he knows that Jo is also a 'Mum' and he doesn't want them to be confused. 

Asthma is still kicking Levi a bit at the moment.  He sleeping in the high guard asthma position.  He obviously needs more stability through his shoulder girdle to breathe at night at the moment.  He locks his arms back and can sleep that way.  I can help him a little with the ventolin but it is still reflected in his sleep posture.  He is not too sick but just reminding me that he hasn't yet grown out of this.  I hate him being sick even though he doesn't really even notice it.  He just keeps on going and is now pretty independent with the spacer.  He just walks past and takes a couple of puffs and keeps going. 



Actually it is hard to watch him sleep like this at this time of year.  As Frankie's birthday comes closer, I think about him more and more and am reminded of his sleep pattern watching Levi.  Frankie always needed help to breathe at night and always slept in a stabilizing position.  I know in my head that it isn't the same.  My brain tells me that Levi just has asthma.  Even though Frankie's first diagnosis was asthma, it never looked like this.  It was always worse.  It was always less responsive to medication.  It was different!  Oh my brain is really good at this.  It is my heart that must be convinced and that is a much harder task.