Today, 12 May 2012, is Cornelia de Lange Syndrome Awareness Day. If you want to read more about the condition that affects our little girl check out www.cdlsusa.org or www.cdls.org.uk.

God Bless

Sometimes I really annoy myself. I’m sure I annoy other people too but this time I annoy myself!!

When the kiddies go to bed, all is tidied up & I sit down with that long awaited cup of tea, (which always tastes the best), I think & think & then I worry & then I cry a wee bit (quite a frequent thing for me these days!) & then I catch myself on!

Why does the devil always get in there with that wee seed of worry…well I guess I let him, that’s the problem. I’ve got to remember one of my favourite verses –

Phil 4 v 6&7 – Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

I’ve got to take those wee worry thoughts captive.

In December time I was driving home on the road to Kells one day and along the side of the road there was a man & his son standing and the daddy had a big chainsaw in his hand. Obviously, or actually I’m just assuming, they were up on the farm cutting down wood, perhaps for the fire in the home.

As soon as I saw them, the story of Abraham and Isaac in Genesis 22 popped straight into my head and the question ‘How much do you trust me?’. I always was blown away by the story of Abraham & Isaac, probably more so since I’ve had children but think about it, being asked to sacrifice your son. The amazing thing is Abraham asked no questions. He got up early and got on with what God had asked him to do. It took three days to get there. Could you imagine those three days knowing what was ahead, your son oblivious to what was going on and knowing what children are like, Isaac was probably chatting away without a care in the world. Verse 5 amazes me tho…”Stay here with the donkey,” Abraham told the servants. “The boy and I will travel a little farther. We will worship there, and then we will come right back.” (Genesis 22:5 NLT). Abraham trusted God and had the faith to say ‘we’ll be back’, WE will, not I will. He kept going, built the altar, got the wood ready & even tied his son to altar still trusting & knowing God would provide a sacrifice. I wonder what he was thinking, I’m sure he was terrified, was he saying ‘Right God, I’m trusting you here, I’m doing what you asked…any chance’…I’ve said that before but yet Abraham trusted, right up to the very last second when he was just about to sacrifice his son. Then in verse 12 it says “Don’t lay a hand on the boy!” the angel said. “Do not hurt him in any way, for now I know that you truly fear God. You have not withheld from me even your son, your only son.” Could you imagine the relief Abraham must have felt. Yes, he trusted God and knew God would provide a sacrifice but he was human too so I’m sure he had the feeling we would have.

What strikes me is the trust and willingness. He trusted God and was willing to do anything, yes I think if you were willing to sacrifice your own son you would do anything, for God.

‘How much do you trust me?’ was the question I was left with. In the middle of our circumstances at the minute, how much do I trust Him?, in the middle of daily life, how much do I trust him? Am I willing to do ANYTHING He asks?

Mmmmm….just a thought in the world of Chelle!!! xo

On New Year’s Eve I was looking back over 2011 in one of my day dreams and as my mind wandered through everything that had happened in 2011, I was really blown away by God’s hand in it all.  Infact, looking back over the past 5 years, God has truly been so real to us in so many ways.

Let me begin (this will probably be a long post but it’ll get you up to speed!)…

In February 2007 I married an amazing man.  That alone was God because if you would have told us about few years prior to this that we’d be married to each other, we both would have said ‘absolutely no way’!!  That story is for another day but God brought us together and He knew best.  I love Paul with all my heart and so glad God had other plans for us.

In November 2008 Paul took unwell with an infection round the muscle of his heart.  This was scary.  A young man, my husband, lying in Coronary Care Unit hooked up to all these machines.  Philippians 4 v 6 & 7 says –  ”⁶ Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. ⁷ Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus”.  All I can say is that God did give me that peace that you can’t understand.  In the middle of that scary situation, as a young married couple, I knew everything would be ok and I knew God was with us, I just couldn’t explain it.  Paul had another flare up of it in Feb 2009 and was back in hospital.  Paul since has recovered well.  As with any man, I sometimes have to be the nagging wife, telling him to slow down a bit when things get hectic!!

Skip on to August 2010.  On 9th August 2010, our little prince entered the world and a whole new adventure began for us.  Elijah Samuel Jenkins arrived at 7.11pm weighing a huge 9lb 12oz!!  I had a very uneventful pregnancy, all went really smoothly apart from the fact that I was HUGE!!  Nothing can describe the feelings we had for our newborn son, our little blessing from God, from the moment we saw him.  We got home and started adjusting to life as three now instead of just two.  It was fun getting used to the sleepless nights, bottles & nappies everywhere you looked…a whole new way of life.  However, Eli began dropping drastically in weight, taking very little feed, being sick after feeds and he was always so pale.  Paul and I aren’t the most tanned of people so we just thought he was just going to be pale skinned but I just wasn’t content.  They talk about a ‘mother’s instinct’ and I kept asking everyone, ‘do you think he’s pale?’.  Thing is we didn’t really know what ‘normal’ was for Eli as he was only born.  At 16 days old, the health visitor called just on off chance to check on his wee belly button cord.  I said again about his feeding and she asked did I want her to weigh him again.  I said ‘yeah it’ll do no harm’ so she went out and got her scales.  I stripped Eli down and laid him on the scales….he’d dropped in weight again, he was now down to 7lb 15oz.  This was too much and the health visitor was concerned.  All I can say is praise God for our health visitor and her experience.  She said about taking Eli to the GP but we didn’t have his name registered with them yet so they probably wouldn’t see him.  It was also a Wednesday so our surgery was shut half day so even if they were to look at him, it would be thursday.  She wasn’t happy to leave him til thursday so she rang Children’s Ward in Antrim Area Hospital to ask their advice…they said to bring him up.  Paul had went to a meeting in belfast so I contacted him and he came straight home.  I remember sitting on the sofa, waiting on Paul, Eli snuggled against my chest and tears rolling down my face.  What was going on, what was wrong with our wee boy.  My sister just happened to pop in a minute or two later and stayed til Paul got home.  We set off for hospital and Eli got examined.  Nothing appeared to be wrong so they said they’d monitor his feeding for a while.  Eli went on to drain a big bottle, something he was not doing at all at home.  The nurse was standing and we were laughing saying ‘isn’t this typical!’.  Next thing, the whole bottle came back up and the nurse knew something wasn’t quite right.  They asked for a urine sample.  So trying to get a newborn to pee into a bottle isn’t quite the easiest thing in the world as you can imagine!!  Finally tho, it happened.  I gave it to the nurse and she took it away and tested it.  A doctor and nurse came back and sat down saying Eli’s urine was full of stuff and could they take him away and do blood tests and get a better sample.  Of course I said yes so they took him into the wee treatment room.  That was the longest wait.  Next thing they came out asking could they do a lumbar puncture into his back.  Again I said yes, I trusted them and what they were doing.  After about an hour, they brought Eli back, wrapped in his white snuggly blanket.  My heart sank, our little man was grey and was sobbing, horrible.  The tests were rushed through and when they came back, a nurse, a doctor and a consultant come over to me.  As I nursed Eli, I will never forget hearing ‘You have a very sick little boy’.  Eli had meningitis.  Tears rolled down my face.  The panic began, Eli was rushed into a wee side room, into an incubator and hooked up to all these machines. He was on intravenous antibiotics for 3 weeks. We later found out Eli had Ecoli Meningitis which had come for a Urinary Tract Infection.  Praise God our wee fighter has come through that battle without any damage what so ever, doctors are amazed as he could have had hearing loss and brain damage.  They are amazed but we are amazed because we know it was God.  Elijah means ‘The Lord is my God’ and at 2 weeks old the Lord truly was his God.

At the start of 2011, we found out that we were expecting another little one.  We were over the moon and knew Eli would be a brilliant big brother.  We went for our 20 week scan and as normal the radiographer was scanning away and was silent, doing all the measurements.  I remembered that from Eli’s 20 week scan so we were happy enough.  At that scan we found out we were having a girl!!  We also found out there was a problem with the baby’s brain, we didn’t know what but we were referred to the Royal Victoria Hospital.  We went to the Royal one week later and I had a more detailed scan.  This is when we heard the news that no parent wants to hear…we were told there seemed to be a space in the baby’s brain and to expect the worst, possibly severely brain damaged or not even making it to term.  It was like a kick in the stomach, we were numb but again that verse in Philippians jumped straight into my head and I said to Paul in the car on the way home…’I have that peace, I don’t know how but I have that peace’.  Paul was the same and we knew there was absolutely nothing we could physically do but leave it with our God.  Cut a long story short we had tons of scans, fetal MRI scan, fetal heart scan and regular checks, doctors were baffled so we awaited the birth of Eva not knowing what was ahead.  Eva means ‘Life’ and we chose her name believing that she would be full of life.  After having a very different and difficult pregnancy this time, on 14th September 2011, our little warrior princess, Eva Beth Jenkins was born at 9.56am weighing 5lb 3oz!! We prayed that Eva would cry as soon as she was born and as she was lifted out, she was born by caesarean section, we heard that loud cry.  At that moment in time, we were just so relieved she was here and breathing on her own.  The neonatal team were on stand by and Eva was checked over straight away and we were alerted of a few complications that Eva had physically.  Still, the little lady was here, we were so thankful.  You can read a bit about those early days in Paul’s blog – www.livingroomthoughts.com.

Fast forward to now…Eva has been diagnosed with a rare genetic condition called Cornelia de Lange Syndrome (CdLS), we are just awaiting the full genetic bloods confirmation.  She also has been diagnosed with holoprosencephaly.  It was alot of take in and it was hard…we had searched and waited for answers or a diagnosis but when it actually came I just felt sad and my heart was heavy.  With all the information you can obtain on the internet, reading the information on CdLS was a bit overwhelming at the start.  Many tears have been shed and I’m sure many will be shed over the years but it says in Psalms that God bottles our tears so I’m ok with that, He’ll just need a good few bottles for me I’d say!!  Eva is a wee darling and we love her with everything within us.  Yes she may have special needs and different difficulties throughout her life but she is our beautiful daughter and we know that God has a plan and a purpose for her wee life.  Why Eva?…I don’t know and don’t think I’ll ever have all those wee questions figured out but really, does it matter.  God has blessed us and entrusted us with her life, what a privilege.  We know our God is able and no matter what we face and what the future holds, He will go before us. My baptismal promise was Deuteronomy 31 v 6 – “So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you”.  I’m believing that.

We have been so blessed to have amazing family and church family and friends around us, helping us practically and surrounding us in prayer.  This has been amazing.

So, apologies for the long post, but you needed to know the background about me as the majority of my blogging will probably be about our family.  I hope to blog regularly, or as regularly as I can with two children under two years old!!  I hope you enjoy.

Love Chelle xo