Mothers Day

It was an active night. Alarms going off almost every 20 minutes, often resolving as I got in the room but needing some stimulation a couple of times some suction and a calming stroke of the head and cover up back under the covers, Eve slept mostly through her distress...not being distressed by it apart from the attempts to cough and smiling to thank me for suctioning it away.

at 7.30 I gave up hoping for another snatched 5 minutes closed eyes and got up. Half way down the stairs the alarm went again and I went back and rolled her over to stimulate some breaths and settled her with her TV on in the hope of being awake enough to watch TV meant awake enough to keep everything else going. I snuck downstairs in the hope that Joshua or Christina would have a coffee ready for me...no such luck so I made my own and grabbed a waffle for breakfast and went to sit in the lounge to relax and drink my coffee before starting the morning proper...two bites of a waffle and I was called upstairs by the beep of the monitor again and decided that it was time to get moving...Eve needed a bath and hopefully this would stimulate her into a better breathing rhythm and maybe calm her heart from it's erratic pattern. So shouting down to Christina to keep an eye on Rosie I prepared the bath and manouvered Eve and oxygen towards the bathroom. We had just made contact with water and were searching for shampoo when I heard the lift door open...Rosie had woken in a state of CODE BROWN! URGH! 2.5 mls of Picosulphate moves her from solid rocks to stomach cramps and yellow rivers...So rapidly rushing through Eve's bath and hair wash she was dumped wrapped in towels back to her bed and the joys of Handy Manny on tv whilst Christina and I managed to sort Rosie out and into the bath....Then Christina went off to dry and dress Eve whilst I washed and calmed Rosie...a couple of times we had to swap as I needed to sort Eve out and Rosie was happy for Christina to wash her too.
Then out the bath and off To Eve's room to dress so I could help get Eve in to a Sunday Best Dress.
Both girls dressed and crowding into the lift we head back downstairs.

Eve is bubbling and choking and wondering if breathing is worth the effort whilst Rosie is straining and crying and looking cvery sorry for herself. I spend the next hour between the two of them changing multiple rivers of yellow from Rosie and suctioning gallons of thick gunk and bubbly saliva from Eve. Thank goodness for Alcogel is all I can say

By 9.30 things were calming down and we managed to get organised to leave the house at 9.45 as planned for Church.
It was good to be in Church where so many people truly care for us and the children. Eve teased Fred with solemn face and closed eyes until he teased a big cheekey grin from her.

Sarah's Grandad was visiting and was interested in Eve's monitors and her alertness at times this morning, whilst being amused by Rosie's insitance on handing out the unused Hymn Books to all and sundry, and even more amused as she tried to gather them all back up. Rosie was in a good mood by the time we reached Church and spent a few minutes at each point she chose to sit...be it lap or chair or floor. It wasnt frenetic manic moving about but gentle wandering and lap hopping, No hair pulling and only one pice of Jewelery being put under threat, and that survived!

The music and singing was good, a great mix of Hymns and a thought provoking sermon and then the children were called back in to hand out Daffodils to all the ladies.....we were very blessed to be recieving Daffodils as the ones in thei feilds that surround our house are not yet in bloom. The gentleman who has supplied the Church with Daffodils for many years must have worked very hard to get these for Church I am sure!

Soon it was time to be leaving and piling all back in the bus. a few snatched words with Sue and a promise we will make time for coffee very soon.

The situation at home is quite stressed again right now. We feel a need to be sure we have plans made to help us to cope with the final goodbyes for Eve....we have had security snatched away as we are told that sudden cardiac/respiratory arrest is as much if not more of a likelihood than a slow deterioration. We also have to make decisions about our end of life care plans to enable us to move straight to the Hospice should that happen.....there are many new questions posed and new scenarios to consider and fears to be faced and peace to be sought in our decisions now that will effect what happens then.

The overiding emotions now are fear and anxiety, a need to know we have done all we can to ensure our needs are met after the event as much as during it, a permison then to concentrate on the living to be done and archiving the concerns about the death to come. A lump in the centre of my chest and the thudding of my heart against it have replaced the feelings that were settling of knowing that the change of hospice has meant we are working towards building relationships with people who will be able to meet the needs of the family as a whole at that time. I am conscious that my ramblings do not make much sense to those who have not been in this position but writing it out can be helpful.

This last few weeks I have spent much time contemplating waht may happen, I have had recurrent dreams of the end, and I am not happy with the thoughts that are not racing through my mind. Panic and a need to run rather than the peace that passeth understanding.

I had a long talk with a close friend yesterday, talking about God's omnipotence, how our lives are held in his hand, how His love for us is so emmense, and none of that do I doubt for one second, I do however have big difficulties tying together my certain knowledge of an Almighty God and a Glorious future and my heartache of a berieved Mother facing further berievment.

I want to get back to enjoying today with Eve, get back to living her life to its fulness, I need to know the needs of the family surrounding the end are all taken care of as far as I can. Then I need to Trust that God will provide for our EVERY NEED!

So on Mothers Day my thoughts are with those who have been berieved who miss their children so much.
I think so very much of my children's OTHER mothers, my heart goes out to them today.
All Mothers who for whatever reason are seperated from their children.

I look back to the mothers days I have celebrated as a mother over the last 21 years and of course that leads to thoughts of Luke, Benjamin and Isabelle, and then I try not to look to the future, try not to wonder if Eve will celebrate next Mothers day with us....I try not....

Happy Mothers Day