Still having fun…

Yesterday, I was really fortunate enough to have a pamper day at Greenwoods Health Spa (something that I can definitely recommend girls...) It was a real girlie day where my hardest decision was should I go for a sauna after my Jacuzzi? It was wonderful being able to totally relax and even my brain was glad of a day off!

Despite being virtually comatose through inactivity God challenged me during the day. I went on my own and at first I was worried about being Billy no mates but it didn’t seem a problem as I met up with someone also on her own on the same lunch slot as me. We had a great lunch together and I was able to tell her about Daniel and how I believed that God wanted me to be Daniel’s Mum. Unfortunately, despite a number of opportunities I think that you can say that I choked and didn’t even mention Jesus’ name or explain my faith. I have to make it a priority now to start and finish my witness statement. I had a wonderful opportunity but was not prepared as my brain was well and truly switched off. I’m a bit of a structured person so I would always need some sort of a script that I could use to prevent nerves from kicking in. I know that God can redeem this situation but it would be a tall order!! Just as well he is Sovereign Lord – Praise Him. This got me thinking about when Jesus comes again and how I need to be ready.

Earlier this week, I was talking to a fellow Christian who asked me what was I good at? This question came immediately after I had admitted that I am not very good at talking about my faith. I responded to this question by doing an energetic goldfish impersonation as I couldn’t think of anything. My SHAPE went out of the window as I was trying desperately hard to think of gifts and talents that I use for God but my mind went blank (I don’t’ think that I can answer this now). The “old” Sarah would have used this to berate herself with thinking of how unworthy she is but this is no longer the case. Whilst I might not be able to recognise things that I can do well, God can and does use me. I automatically remember the verse that God uses the foolish things to shame the wise. Yes, I will try to improve my evangelistic technique but not all of us start from the same place. God will guide us at the pace he wants us to go if we obediently seek his will.

Time flies when you are having fun…

So much has happened since the last time I have blogged that I hardly know where to begin. Last week was a funny kind of week where all the nice things that I had planned to happen didn’t and things that I didn’t want to happen did. Kevin had an abscess on his tooth, Daniel needed to go to St Johns unexpectedly and I remember feeling a little flat but glad that the week had ended.

What a vast difference this week is. I am having a ball!! So many nice things have happened and it’s only Wednesday. This time last year, Daniel was recovering from heart surgery and each day was a trial. I couldn’t take Daniel anywhere where he could come into contact with germs (which when you think about it doesn’t leave a lot…) On Monday, Daniel and I went to Oaks and Acorns which we both enjoyed. This is the very first time that we have been to a Mother and Toddler group. The only groups that we attend all relate to Daniel’s various health disadvantages so it was refreshing to go somewhere which was all about fun. Daniel enjoyed all the attention and is getting very strong. So strong that he pulled one of the other Mother’s hair and wouldn’t let go so someone had to rescue her.

Today, I have been thinking about what Paul said in Philippians 4 v 12 - 13:

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength.

I feel at the moment that God is teaching me this very secret of contentment and he knows how much of a challenge that I find this but he knows that I will trust in him whatever my circumstances.

Daniel is 17 months today

This has been a bumper period of growth for Daniel. I cannot help but compare his development to my relationship with God, which has had similar periods of up and down. Sometimes, I feel like I am playing a game of snakes and ladders in life and when I least expect it I end up on a snake… I know that I’m not alone in this, but God gives us the strength to get back on the ladder and climb it.

There is something rather precious about a child’s innocence and the fact that they are excited about anything new that they experience. Daniel really enjoys life and even when he is connected up to his oxygen he does not allow it to slow him down. I have been told repeatedly by the health care professionals that Daniel has made phenomenal progress developmentally. This is a wonderful answer to prayer. He is however, behind his Down Syndrome peer group. Still, he is streets ahead when it comes to effort and determination. He wants to move on. I find this hugely challenging about my Christian life. Do I want to become stronger in my walk with God and am I going to persevere when sometimes it would be easier just to lie there? Daniel has poor muscle tone, which has improved dramatically, he used to be really floppy and hardly lift his head up off the floor. There are times when that unfortunately mirrored my walk with God. Daniel’s determination and the repetition of various exercises strengthened his muscles. He had to work with me to improve. I feel that one of the things that God has taught me since He has blessed me with Daniel, is that I need to work more with Him. I need to trust him to move me so I can stand up and see things as he wants me to do. Sometimes, I wobble all over the place and fall down. God lovingly and tenderly picks me up and lets me catch my breath when I am tired and then repeats the exercise until I have learnt what he wants to teach me. I do feel cherished.

We had a good day as a family today enjoying a wholesome (!) pub lunch with family in the sunshine. It was lovely and is one of those times in life where you want to hit pause just to retain the moment. Even something like this 2 months ago would have been difficult for us but we are becoming more confident in how to deal with situations when we are out and actually enjoy them!! It is a blessing that we don’t take for granted.

My first wedding... Still no oxygen!! 

Look - no oxygen 

Diary of a distracted Mother

Today the image of the crucifixion stayed in my mind in relation to our sin. I began to think of disobedience and how when Jesus was dying for me when I am wilful I am deliberately adding to the pain that he bore for me. Anyone that knows me will be aware of how squeamish and how I cannot watch casualty or ER without a cushion… I find this a truly horrific image and am just amazed that despite this Jesus still loves me.

I am pleased to say that Daniel has today come off oxygen during the day (he was on it for 2 weeks as a result of a cold) This is particularly good news as we have won a professional photo session and wanted to take advantage of this when Daniel is tubeless…

Unfortunately, Daniel has 2 infections in the wound in his tummy, which will need antibiotics. Nothing major but annoying none the less. He seems to be getting a lot of these and nobody can tell us what the cause is.

Developmentally, Daniel is doing well. He can sit up unaided (although wobbly ) for quite some time. He has progressed so well that he is no longer in the remedial movement class at Moulsham Grange. This was on a weekly basis and I am now only going to get monthly classes to help Daniel’s mobility improve. Another struggle. I have managed to get some interim input but have some concerns about how he will be able to build on his progress. I have been given 6 pages of A4 on how to help him crawl… I am in danger of being suffocated by paperwork.

This seems to be a get it off your chest blog, but I know unequivocally that God is with me throughout all the details in our lives. I believe God’s promise when he says that he will never forsake or leave us.

Daniel even swims on oxygen - his debut in his costume... 

A week in the life of...

Well, I thought that I’d keep blogging but have had a week off for good behaviour! This past week both Daniel and I have been having a little holiday in Little Haven Children’s Hospice. We have both been resident and the idea is that I come away with my batteries recharged whilst Daniel has the time of his life.

We were only meant to be staying for a total of 4 days but extended our stay for another 2 nights as with one thing and another it didn’t prove to be the restful experience that I hoped for. Daniel, however, did have the time of his life and is pretty unimpressed that he only has Mummy and his toys to play with now. He is showing diva tendencies a little early.

Daniel still has problems when he is fed as he often retches. This is really painful for him and is quite violent. There has been a level of concern that the severity of his retching could undo his stomach surgery that he had done in December. To cut a long story short we are trying all different timings and quantities of feeding in the hope that a solution is found. Nothing yet. We may have to feed him by pump overnight so our house will look even more like a hospital than it does already. I am trying to get my head around all the alternatives. This is hugely exhausting and also soul destroying. All this was being weighed up in the Hospice so I wasn’t really in the right frame of mind to relax.

For many reasons our stay was one which turned into a monumental emotional rollercoaster for me. When things got really difficult I prayed with a lay preacher who asked me to concentrate on just one thing that I had learned from the 40 Days of Purpose. I know that no experience is wasted – every problem is purpose driven and fulfils the 5 purposes that God has for us in our life. Little Haven is a Christian Hospice and I am able to discuss my faith openly with the staff (something I still find comes very awkwardly).

God has some lovely touches. On my worst day in Little Haven when I had been emotionally distraught God’s gentleness to me was breathtakingly beautiful to behold. I managed to trust God during a time of immense doubt but I had been fearful. My prayers were answered very quickly but that wasn’t all. On that day I went in the swimming pool, I have never been able to swim. I swam my first width because I knew that I had conquered fear through the strength that God had given me. I was exhilarated as previously I could not take my feet off the floor but now I can swim! God gave me more than I asked him and I ended the day on a high rather than remembering all the stress of the days events.