A good week until...

We had a GREAT week.  Hope was smiling, she tolerated her full volume of formula and she enjoyed all her daily activities.  Friday was Brodie's chapel at school and Hope was able to come with me for that too.  Our respite worker, Ashley J. was along to help...thankfully.  Then Hope had a little 'puke' on Friday night...and I tried to ignore it.  That didn't really happen...right?  Saturday she seemed fine, so we continued with her normal routine, until 5pm when she started puking up buckets of formula which was not digested at all.  Her stomach is not working again!  Luckily, we always have her situated for potential puking (as you can see in the photo above), so we only had a little mess.

Today Hope is looking pretty bad.  Her eyes are puffy, with purple bags underneith from all the heaving.  She's seizing constantly from lack of seizure meds, and she's still vomitting up some blood-tinged emesis.  Yep, that's depressing.  It doesn't matter how many times we see this, it is still awful.

I know it's taken me a while to post, and I'm sorry that you might have been wondering how Hope is.  Thank you so much, for caring enough to wonder about us.  I was going a little crazy this week.  I even had a few moments of panic when the workload felt like too much and I messed up a couple appointments.  I started wondering if this is what grief does to a person.  I wondered if maybe my brain was becoming resistant to the constant pressure and it wasn't going to work anymore.

After much consideration and a lot of venting, I realized what the actual problem is.  I can't handle any external pressure!  I CAN take care of my kids and even my house (if I want to), but I can't take care of anyone else (no coffee dates, no showers, no visiting, no parties, no planning ahead).  And of course, no one expects me too!  We may be feeling 'okay', as I told you but we still need to take time to walk this road of grieving and deal with the moments that come.  So, as of now, I am letting everyone know that I am taking it one day at a time ( because letting people know this, makes me feel better about saying 'no').  I need to feel what each day brings.  If I decide on a particular day that I feel like a visit, then I may say 'yes' to a friend, but I can't plan ahead and have that pressure to show up and ignore what I really need. 

The days when I need to be home alone with my children are coming more often now, and I think it's because Hope is so unstable.  I don't feel like we have a lot of time left with her, and I know you'll understand that.  I'm not going to guess at a time-line, but I will go with my instincts which tell me to concentrate on my family (and even myself) right now.