Ok, so this is gonna be not so much about Hope, but it's dominated my thoughts today....
When my Sam died, I joined a forum called SANDS (still birth and neonatal death society). I gained so much comfort knowing I wasn't alone, being able to talk to people who REALLY understood. One of the ladies who helped me in the early pain filled days and long nights was a lady called sam. She'd lost a lil boy called Alex in 04. She had older sons too. She Was a lovely kindhearted lady who was 'there' for so many people.
In June this year, Sam was blessed with another son, Shay. This morning, through
Facebook and sands, I discover that Sam has died. Her own son has logged onto facebook and changed her status to tell us all that his mum sadly passed away yesterday.
So today I am struggling to understand how something so sad can happen. No mother should have to bury their baby. I know that is a pain that never goes away, just one you learn to live with. So for Sam to be blessed with another baby boy, then herself be snatched away from him, leaving behind other children and a husband seems the cruelest twist of fate possible. I am baffled as to how a god could let so much tragedy happen to one family.
If you pray, then please pray for the Barnes family.
Sam, you will be missed by so many. May you and your beautiful Angel Alex have the sweetest of cuddles tonight. Please kiss and cuddle my Sammy for me, and look after all those special angel babies.
Hope and I did have quite a good morning. We had some time on the activity mat, then some bumbo time playing with her new toy from Jess and family. She did hit it a few times, but I am hard to please; she'll have to do it a few more times before I put it down to anything more than luck combined with excitement.
After we heard about Sam, I've been pretty miserable and this has had an effect on Hope who has also been miserable. We've mainly spent rest of the day cuddling and feeding on the sofa. She got in a grump earlier and despite lack of teeth, bit me really hard- Ouch! I dread teeth.
On the seizure front: just 3 barely noticable this morning, then 7 mild tonight at ten pm. I am noticing that these are happening before her meds, which probably means it's because the meds are wearing off. She's currently on 4.5ml twice daily of vigabatrin (which are 250mg sachets diluted in 10ml).
6 days ago