Plodding

I am really looking forward to this Bank Holiday weekend as I am going to catch up on my sleep. Hopefully, we will get some sun too.

Work is difficult as today's topic was the surprise sudden death of someone known to the team. Whilst I took myself off discreetly the conversation was still in full swing when I returned later. There are some things you will never forget - Daniel's last cuddle. It is like being stuck in a horror movie where you know the main character is going to come to a sticky end... "Holding it together" takes energy and then when in a "safe environment" discharging this too is tiring.

I have been asked whether I will write a short piece on Daniel for a Downs Syndrome magazine for a local support group. I have said yes but have no idea what I am going to say yet. I am pleased to have the opportunity. I was thinking of doing something like this but kept putting it off.

I find it funny that even watching television now is hard. Yes, it's true. Before I would have watched the "SuperNanny" programmes to pick up tips and learn from other parent's horror stories - these no longer apply. Anything medical normally gets switched off. I do, however, watch things that I know will challenge me to help me come to terms with the anguish that goes with grieving. The X factor definitely reaches the parts! Daniel had it...

I accepted that God wanted me to be Daniel's Mum despite all the medical issues that we faced. Equally, I know that Daniel being with Jesus (earlier than I had planned!) is the plan that God had for Daniel and also for Kevin and I as his parents. Accepting God's sovereignty is one thing, understanding it is another. I can trust in God knowing what is best for us, but the enormity of losing someone so very close is beyond understanding and very painful. I was asked on Sunday whether it gets any better. My answer is, yes but no, but yes, but no, but yes, but no... I know it will in time, but God's timing is very hard to determine.

Exhaustion

We have had my little niece(aged 11)to stay for the weekend. She had stayed before when Daniel was alive but did not seem unduly troubled that she was the only child in the house now. How I wish that I had this level of resilience. I felt taht I was putting on a brave face most of the weekend as there were lots of triggers or snakes (as in snakes and ladders) of grief. We went pottery painting, which was a very cool Auntie thing to do. It was so hard as it was something that I had planned on taking Daniel to with his cousin but a hospital trip prevented this. Today we went to a boot fair and there were so many memories, toys, clothes. I know that time is supposed to be a great healer but individual timing is so unique so there is no end date in sight...

I need a focus, but it is just enough at the moment to go to work, come home and if we are lucky assemble dinner (cooking is a bit hit and miss in our house!) I just want to get to a place where things are settled and there is a level of normality again. In some ways this is happening, but in others it just is not possible as we are "weighted down" by our grief.

I was talking about the break up of a relationship with a friend who said that everyone had experienced relationship breakdown somewhere so people generally could relate to one another whereas in my case as it was so unique nobody knows what to say. I do feel in a bit of a zoo, where I am peering out from behind the bars of a cage to see a world where everyone else is together. I know that sounds really "dark" but honestly I can't seem to escape from it just yet. I know that God is there with me but He is very silent. I haven't given in, but just need to rest awhile to conserve my strength.

I am hanging onto a verse in Psalm 30

YOu turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent.

I look forward to this and the many promises that God has made to us.

God Incidence

Isn’t it amazing how God puts just the right people around us. Today, I found out that the person that I was sitting opposite is a Bereavement Support Volunteer for Farleigh Hospice. Before I went on Maternity leave I was the Volunteer Co-ordinator for Farleigh. It turns out that we had spoken before in my previous role, and we both remembered who each other was (!!) I found it difficult to be reminded of a time when things were very different. It was too painful so I had to excuse myself before the emotional dam burst. I was out of luck and it burst… Still, I have a colleague who sat me down and listened to me who has gained understanding and respect for me too. Today was always going to be hard as Daniel would have been 21 months. Even amongst the pain and turmoil God placed me right in front of someone who would understand. Only the touch of a loving Father. When I go into work tomorrow I go in knowing that I will experience greater understanding which gives me greater room to heal all part of His plan.

Blogging

I am having a bit of a crisis. Well, it’s not me; it’s my computer… It keeps throwing a wobbly each time I try to blog so I can take a hint. It has been known to only publish half a blog so it has become my Editor. Please don’t think I am complaining (see Pat’s blog) but I do think I have to keep on the right side of it otherwise it will finish our relationship (it’s the boss!!)

Normal life seems to be going on now. Kevin and I went to a Pub quiz last week (our team came second from bottom), went out for a meal and went to Kew Gardens too. We are able to maintain a level of normality and can smile now. This level of normality immediately disappears when I come to church. I only have to see/hear a child, sing a song with certain lyrics or have any vague reference to family and I am a gibbering wreck. Daniel has been dead 15 weeks today and we have had to learn so much more from his death than we did during his lifetime. I find grief to be like snakes and ladders you can go along and almost increase your pace in life when you find a snake and go sliding right back down. We have passed empty and being burdened by our grief just a feeling of anti-climax. At the time of crisis you can cope but immediately afterwards it is the enormity of what you have been through that can be so debilitating. We may come back to this phase again but at least we are not permanently stuck in it.

I am working full-time still at the Fire Brigade and am even having to work longer hours to benefit from the flexi system. This is a bit of a struggle for me as I do not have the stamina.

Lastly, I learned something useful today. Did you know that if your mobile cannot pick up a signal, if you dial 112 you can be diverted to the nearest satellite to get the emergency services?

Will blog soon, computer willing.

Lots going on...

I have had a busy week, probably no more so than most people but I seem to get so emotionally drained doing normal stuff. I am still struggling to get a decent night sleep and both Kevin and I woke up at 6:30 a.m on Saturday morning. I think I am going to get Jonathan to programme my sleeping clock... I was thrilled as on Saturday, we received details of the little girl that we will be sponsoring Ana. She is a 4 year old Phillipino girl. When I was Daniel's Mum, it is something that I wanted to do, to show him how other children lived and so that they would be able to share experiences. Whilst things have changed, having the opportunity to play even a very small, remote part in another child's life feels like a huge privilege. It feels great to be able to positively influence someone else's future.

Sunday was spent rushing around. I went to Norfolk to visit my family and came back to church in the evening for a rest! Mike's sermon was inspirational and he has a wonderful vision for our church. If you missed it, the tape is a must. I was really challenged about God's dream for each of us. If you have never experienced grief, it is like a wet blanket dulling your senses and being a huge ever present shadow HOWEVER God can and still does reach me! I am praying for an openness for God to guide me to where he wants me to be. Right now, I cannot remember much before life with Daniel, just life during and after his lifetime. By being open to God irrespective of whether I can feel anything or not, I am trusting God with all that I am, entrusting my future to him. This is not some kind of feeble, "suppose you had better had your way, then" but an active surrendering to what God wants for my life. Just typing this, I feel shaky as I have no idea where this will lead. Back to trust and faith. Tonight I have a picture of God taking my hand in his, in the picture, I am a small child. He is leading me by the hand and tenderly pointing things out to me on a journey where all I ask him is why. I am being a typical child, "But, WHY, is the sky blue?" God shows me infinite tenderness and patience. I need to learn not to run off into an adventure of my own but be receptive to all that he wants to teach me.

Letting go

Today it is 3 months since Daniel's death. When Daniel was alive I counted over 15 health care professionals who made up "Team Daniel" this is in addition to the nursing staff who cared for Daniel at Great Ormond Street, St Johns and also Little Haven Hospice. Today I had to say goodbye to a nurse that I got on really well with and that is another sense of loss. Given the intensity of the experiences shared and the frequency (!) of our visits you cannot help but have a deeper relationship with someone. There were many times when I spent more time with nurses than I did with friends and God was good by putting around me people who I could relate to. These nurses knew and understood me, guided me and encouraged me how to live life to the full irrespective of all the difficulties that we faced as a family. This was all part of "normal life" with Daniel, which is completely unnusual for others. Most of all the nurses knew how to relate to me and their reassuring presence helped me view our situation as normal for us. I am now facing the outside world, no longer part of a small team, but feeling disorientated about how to live life in the real world. It feels as though I have been away for the past 2 years and coming back to reality, as everyone else knows it, means that I have to relearn how to do things. In a way, I feel that I am learning to walk all over again. I need to hold myself up against things so that I do not fall until I feel sufficiently balanced (!!) I do feel blessed that I have a number of friends who are willing me on and give me strength to keep toddling until I can keep in step with the general pace of everyone else. The hardest thing to do is take the first steps and often they are more daunting to prepare for than actually do. I am reminded of Footprints where, at the very darkest and difficult times, there is only one set on the sand - God's. He never gets tired of carrying us. A chorus comes to mind:

By the grace of God we will carry on, his love endures forever...

Life from a different perspective

I also had to laugh as looking at an advert on the web the advertiser was recruiting people with "a god character". Mmmmmmmm.... Who would dare apply?

And finally, someone else was having the last laugh this morning. There is road works in the road where I live and I noticed my car looking a little different this morning. Some joker had put a cone on it which had scratched the paintwork. Fortunately I was sufficiently awake this morning not to drive off with it, that's not always the case.

Oh well...