Being vulnerable

Its been such an incredibly hard time since our new little bundle has been born.
Its been an incredibly hard and trying time, but also a time full of so many blessings.

What a blessing he is - and I am incredibly grateful for him but his arrival has not been an easy one and has caused me to question and to hold on to God like I haven't had to do in a very long time.
He will be four months next week - that time has gone so fast in some ways- but in other ways it has been painfully slow.

Its been a time when I have had to allow myself to more open and honest, and its certainly been a time when God has been speaking to me about so many things in deeper and fresh ways.

It has been a time when I have leaned more heavily on my husband than ever before and our marriage has grown and strengthened even more.

I discovered in a conversation with someone at church about 6 weeks ago that many people had no idea I suffered with a rare medical condition.
They made the comment that they knew I had rare complications during pregnancy but once I'd healed from the c-section etc - I'd be all well again.

It made me realise just how well I have hidden my suffering from people. This person I had known for about 3 years.
They had no clue why I had rare complications during pregnancy - they had no clue of the pain I experienced each day.

I started to share with them and their eyes were wide - and she made a very impacting statement to me.... " Leah, why do you hide this so much? "

I gave her a brief answer, something along the lines of, 'because I don't like complaining" and I don't like making people feel uncomfortable around me when they don't know what to say when I am honest about my health or 'how my day really was'.

I knew deep within me, that there was another reason I struggled to be vulnerable. I have been trying over the last few years to let my wall down, but it seemed I had a long way to go.
For someone who has no problem sharing my life in other ways, my health has been something I have held very close to my chest. And only I knew why.

This lovely Lady and I chatted for a little while longer and I shared a bit more about my journey and my illness I've had since I was a little girl. I shared about all the surgeries, the diagnosis, the years of wheelchairs, crutches, hospitals, missing school and being away from my dad and brothers while mum and I were in the hospital all the time. I talked about the chronic 24/7 pain that I've been experiencing since I was 7 and the fact I can't remember not being in pain or constantly exhausted from the chronic pain. I shared about a lifetime of painful treatments and heavy medications that have led to dependency at times on them, horrible withdrawals and side affects and weaning processes that cause you to feel like your body has been overtaken by another creature.
I shared how throughout it all I believed God was faithful, and good and was a mighty healer. I shared how for me the joy of the Lord was my strength and my faith and a positive attitude helped me get through each day and my deep love to help others. She listened and had a beautiful look of understanding and acceptance - she replied with many beautiful and encouraging statements, but it was the next statement this lovely lady made, that has been leading me on a journey since Ezrael was born, she said, " Leah, everything I know about you - shows me you want to use your life to help others. To help people find freedom and justice and to understand that God loves them.  You want to glorify Him in all you do, and you do do that, and you said you believe God can be glorified in your pain and illness, but how will that happen if you don't share about your journey? "

I didn't really give a response to it but it challenged me deeply.
It made me realise that I was still carrying around a wound and made me confront the reason I often refused to be open and vulnerable with people.

You see there was a time when I was a lot more open and honest with my challenges - I mean the majority of my growing childhood and teenager years it was hard to hide it, since I spent majority of it in hospital and having large surgeries which would leave me rehabilitation, and wheelchairs and crutches for months. But I was definitely more open about it - I had no reason not to be - people were always kind and loving and understanding of a young girl sick, or even a teenager
But one day I had a fellow teenager ( who was a friend) question my sincerity - or the severity of my condition. As I sat there in a wheelchair after yet another surgery, I was challenged about the fact that they believed I was 'faking it'..... when I asked how you could possibly fake this - and said that I could go and get the xrays from home that show the growths that were inside my legs - that were longer than my hands - or should I call the surgeons that cut me open and have removed the other growths they've found in the past or that treat me. They quickly back tracked and said, " well maybe you don't fake it but maybe you exaggerate it for attention".

I can still remember the knife that went through my heart with those words - at 17 years of age as I sat there in a wheelchair with my leg in plaster sticking out - I felt that I had always been positive and hadn't used my condition to draw attention to myself.
It hurt, so much.... but I had no idea how those words would affect me over the years.

Although I have forgiven those friends, who I'm sure probably don't even remember it and even though they've never apologised I gave it to God many years ago but God has revealed to me this year that I was still struggling to be honest and open to people, or to be REAL with them because of those words.

Since that conversation with that precious lady - I've been working on being more open, more honest with people.
I even shared my testimony in church a few weeks back - obviously in 10 minutes you can only share a small portion about your life - but it helped. ( There's a link at the end to my testimony)
Now people have a better understanding of my life, my journey and struggles - but also my joy in Jesus. I think people realise more now why I have to be so positive and upbeat - because it would be so easy to let pain and my health challenges to pull you down.

There is still so much I could say - its a huge conversation -
There is so much we teach in the christian church that is SO wrong in relation to health and sickness.... silly things like" oh its God's will for you to be sick...."  etc,
But I know God heals and He is a GOOD GOD.

Its not an easy conversation - I still don't know even how to address it when it becomes something I need to share with someone ....."I have health challenges"...... "i'm sick."... "I have something wrong with me"....." my health is bad ".... "i have a disease"..... ??
I never know the right way to explain to people that I'm not 'well'?

Its incredibly difficult having a condition that's invisible.
Its much easier when I limp obviously when my pain is exceptionally bad, or when I was in a wheelchair or on crutches more etc - its so much easier.
But when I am not using one of these aids or walking more normally - its much harder. People assume I'm better or well?

Even now that I'm out of the wheelchair after having Ezrael - people say with kindness, oh your getting better, or its so good to see you all better.
The reality is thats not the case - I am actually in more pain than I was in the wheelchair.

I have experienced more pain this time having Ezrael, than with Hezekiah and the reality is with the condition I have that surgeries often mean more pain, not less.
When the nerves are cut and don't heal or regenerate - that creates new pain.
This is certainly the case this time.

Is Ezrael worth it - ABSOLUTELY - does that take the pain away, does that mean I like that fact I can't roll over in bed on my own now, or struggle to do basic mum jobs - no.
But its the new normal.

God's been teaching me so much since my little man was born this time around.
Just as God did teach me so much when Hezekiah was born.

I've really been learning what it means to be honest and real with people. To be vulnerable.
I want that in my life I've realised.
I don't want half hearted friendships anymore - I want to learn and grow and be better and do better.
I'm actively asking my friends deeper questions now - so be prepared for that ! :)

I'm learning that its ok to say - you know I'm not ok physically or emotionally - But I'm still good, if that makes since :)

I'm learning its ok to say - Hi my name is leah and I have a rare condition that affects about 1 in every 1 million people

It hasn't been easy - especially as since I've had Ezrael my health has been even more challenging than normal. And not just things relating to the pregnancy complications that I or Ezrael have faced.

I am currently fighting an African bug that appears to have been laying dormant in my system for who knows how long.
And because my body was run down after the birth it decided to attack my intestinal track, an infection that has led to extreme nausea ( just like being pregnant again but with no beautiful baby at the end), an extreme headache, weakness and ulcers in the intestines, which means extremely bad pain and blood in my stool.
Honestly its not nice - I am so thankful for my very clever husband who worked out what was happening to my body after being treated for other things and for waiting for more tests!
Thankfully my darling clicked on and with the help of my wonderful Dr are trying to treat it - but the treatment makes you even more sick!
It's been horrible to say the least and again I have hidden it well - I've still been going out and trying to do what I can because if I didn't I'd probably fall in a heap.

The first round of treatment hasn't worked - and we've had such a hard time getting the medications - and now we have to increase the dosage to try and beat it as all the symptoms are back.

This is all while I'm still healing from the c-section, and struggling with a flare up of my condition and pain due to my body being run down.
I have moments with McCune Albright and Fibro ( the conditions I have) where I can be stable and then I get a flare up, so everything gets worse
This often occurs after sickness or surgeries - so having a baby and a c-section especially is the perfect storm.

In all truth's my body has not been kind to me lately - even worse than usual.
The journey to have a baby for me is a long one - 9 months of a very difficult and painful pregnancy, with so many complications and extreme pain for me and my sons in the womb ( yes sadly my condition caused stress and pain in the womb for my boys)

The recovery is long and hard ( with Hezekiah it took me a good 13 months before I felt I was my normal self - even though I had new pain now from where nerves had been cut and damaged)
It includes addiction to medications and having withdrawals which is extremely hard on me and our little one - its so hard to watch your tiny baby experience those symptoms.

It includes months of monitoring and awful sickness and feelings as Me and our baby is weaned off the medications and are placed on medications that are available in Uganda.


Its a long journey - and it is the same this time - although recovery is taking a lot longer, which was to be expected.
And we haven't even begun the weaning process yet this time as I've been too unwell.... but I thought I knew what we were going to face.....

BUT I DIDN'T -  I certainly didn't bank on fighting an african bug at the same time!!

Some nights as I have laid in my husbands arms sobbing in pain, or with nausea from the bug - or now from the medications trying to treat the infection - it would be very easy to turn my back on God - or to question His goodness.

I can say - since Ezraels birth - I have done more soul searching than I have done in a VERY long time - and being so sick with this african bug - has certainly added to that.

Wondering now how to I mother, while having a life long condition ( although I still stand on believe God will heal me one day) ..... how do I mother two active boys when in constant pain....
How to I be involved and run a growing organisation while sick in a third world country.....

How do I use my pain.... this sickness.... this condition ( I try not to say my condition - as I don't want to own it ) ........

I don't really have the answers for these questions yet - maybe I never will..... but I am learning more of God's faithfulness and His goodness.
I'm learning how true and real friendships - are incredibly rare - I have many friends.... but those ones where you feel safe enough to be vulnerable.... those friendships where people take the time to ask and actually listen to how you are.

I can honestly say I have only a very small amount of friends who actually ask specifically - how my health is... or how I'm going with my pain etc.
And I do understand its hard for people, they don't know what to say - but not asking is worse.

I'm learning how much I am craving realness in my life - deeper friendships... a deeper marriage ( although I think our marriage is pretty fantastic) ..... a deeper understanding of how to help and do our work and ministry in Uganda..... and certainly a deeper understanding of who God is and how I fit in to this plan.

I'm understanding more about how the words we speak and how we judge others can cause people to carry hurt and burdens for a lifetime if we are not careful. Although I had forgiven those friends that spoke those words over me - I was continuing to allow those words to make me feel guilty and trapped and that I couldn't be vulnerable with people, hence they make think I was 'Faking it', or 'complaining'.
We must be so careful of what we say to people, but we also should be ACTIVE in throwing away negative words spoken over us and to not carry them with us through life.

I am understanding just why the bible encourages us to "bear one another's burdens, share with each other, and so fulfill God's law". God saw that being real, and vulnerable with each other, is really the only way we can do this life well.

When I sat down to write this blog - it was only going to be short - more for myself on keeping a record of some of the things God's been showing me since Ezrael's been born.

Now I see its rather long ( not surprising I guess really ) .... and I can see how much I've missed writing..... and how I think God wants me to write more......

I am seeing more of who God is.... and I can say honestly that my positive attitude and that my strength certainly comes from God... but it requires me to stay close to Him.... these past few months have certainly tested me physically and I know that's not over, (  especially tonight as I begin the next round of treatment to try and beat this infection...... )

but even more so emotionally and spiritually as I aim to hold on to my faith and my utter believe that above all......... God is good.



READ BELOW FOR A BIT MORE INFO OF MY CONDITIONS AND FOR
LINK TO MY TESTIMONY https://www.facebook.com/eastlakessalvos/videos/1422374754509803/

McCune-Albright syndrome is a rare disorder that affects the bones, skin, and several hormone-producing (endocrine) tissues. It can also affect nerves and many other parts of the body in various forms. People can suffer from it in various degrees, depending on how many cells were affected during the mutation in the early stages of development in the womb. 
This was a condition I was born with. 

Fibromayalgia is a condition that impacts the pain signals to the brain - little is known but Drs are learning more all the time. 
Many people now suffer from this condition - but it affects me in some similar ways to others but also in many different ways as it fights against my other condition. 
Dr's believe this condition has come about due to all the trauma my body has experienced from a young age. 
I was diagnosed with fibro approx 5 years ago but was most likely suffering from it a lot early also. 

The combination makes treating and understanding me - even more difficult for the doctors 

Handing out backpacks

We are very grateful to our brother Geof who was able to represent us recently at The Salvation Army children's home in handing out brand new school bags to all the children who call it home. 

In the lead up to Christmas we decided this year that we would fund raise for new backpacks for the children we minister to. 

Due to the fact that many of them go back to the village to have time with friends or extended family over the Christmas break we told them at the Christmas party that they wouldn't get their Christmas gifts until school went back ( we didn't want any bags to go missing in the journey home etc) 

We are so grateful to all those in Australia who helped us raise enough money for approximately 40 backpacks. 

We are so grateful as are the children - many of them would never had a new bag before. 

Check out some of the photos below of one of the groups of children receiving their new bags. 

Hezekiah's Story - Our little miracle... FROM MUMMY'S perspective

Hezekiah's Story  OUR MIRACLE 
From mummy's perspective 

I’ll never forget the day we found we were actually pregnant.

We had made decision earlier in year we would actively try for a baby that year.

Even though I had been told since I was 13 I would never have a baby – or it was highly unlikely – it had never stopped me from dreaming or believing.

I talked about being a mum, dreamt of names along with my girlfriends and a large portion of my friend would not have known about what my specialists had even said to me that day in Sydney.

I believed I’d be a mum even if it was through adoption – something I had a huge heart for.

Rob does too, so as we talked of building a family adoption was always going to be a part of the story somehow – whether that was how we built our family in total or whether it would complement miracle babies God might give us.

So we made decision to try – I internally and very personally made the decision that I wouldn’t allow the outcome to take my joy – and that even if adoption was the only way – that it would be just as perfect.

One day I woke up feeling strange – nauseas, and some other unusual symptoms only a woman would get.

After a few days of this, I woke up one morning with a rather bad pain in my side.

Rob finally admitted maybe I should try a pregnancy test. After a few came back negative on the one day (he had put the thought in my head so now I had to keep testing J

When I tested the next day with the last few simple Ugandan pregnancy tests, you could faintly see the possibility of 2 lines.... could this really be!!

Rob was surprisingly calm and didn’t seem overly excited and warned me to wait and see from blood test before I got too excited. He did this in a gentle way without dimension my hopes.

We went along to church as normal but all morning I had noticed the pain in my side was gradually increasing till the point during church I felt I may black out and be sick.

So when Rob got phone call to go in to work (constantly on call) we decided we’d call in to the small clinic in same street as our church for quick ultrasound and blood test before he needed to be at work, as my pain was increasing.

The ultrasound didn’t show anything where a pregnancy should be – I felt rather deflated but tried not to allow that to show – I then kind of switched off – then the dr and rob did a lot of chatting and talking amongst themselves and pointing at the screen – all I really took in was a mass I could see in my fallopian tube – right where I was having the intense pain.

I didn’t really know what it meant at that stage – some sort of infection I presumed.

They also did a blood test – we sat and waited for few minutes – gave us the results in envelope and we left.

I casually opened the envelope when outside on a red dusty dirt road, and glanced at report – I looked at it then up at rob.... and said – is this real... is this serious?

This says positive for pregnancy!

I screamed – he smiled and said yes.

I could not work out why he wasn’t more excited when all I wanted to be doing was a dance right here in front of all the people already staring at the excited mzungu.

Rob said, I have to get to work honey, we can talk and celebrate when I get home.

So we had to go our separate ways.

I went home feeling just so incredibly high and praising God for a baby – a miracle baby.

I had no idea what was to come.

But it did not take long to find out – over the next hours while I waited for rob to return from work I was sick numbers of times and in excruciating pain – and I know pain – I have had serious – large orthopaedic surgeries almost every 1-2 years of my life since I was 8...I lived with chronic pain every day of my life... I don’t even remember a time before pain..... But this was different, a pain I’d never experienced before.

By time Rob got home pain was very bad- but when he came in I put on a brave face and we hugged and rob prayed over me and the life inside me – but If I’m honest I couldn’t work out why he wasn’t more excited – within a few hours I was in bed crying in excruciating pain – almost in and out of consciousness from the pain.

As I watched rob kneel beside me holding my hand – I knew something was wrong – it was written all over his face..... I said what is going on...

He said honey you are pregnant but not with a viable pregnancy – you have an ectopic pregnancy.

The tears flowed and he said we have to get you to city to confirm and then get you to surgery. This was in the middle of the night with no way of getting there till morning and it was an 8hour long journey on a public bus.

Rob managed to get hold of Dan my brother in Australia and without telling him what was wrong just told him I was very sick and in danger, real danger.

Dan reminded him of god’s power and the authority Rob had as head of our family.

So Rob went to prayer – he prayed like I’d never heard him pray before – amongst the agonising wails from me in pain he held my hand and prayed – prayed for God to do a miracle.

For God to save this baby – something rob had never heard of even being possible with an ectopic pregnancy but begging God to move the baby to the correct position.

I fell in to a deep sleep – almost unconscious – Rob says there was such a peace fall upon me and the room. 

He continued to pray and beg God and then woke me early in the morning.

We made our way to bus station and I said to Rob the pain had subsided some and was now in a slightly different spot – over the hours it took to get to the city I continued to feel the pain move..... It was moving more central to my abdomen and as it moved it seemed to be fading.

By time we made it in to city and went to a place with a good ultrasound machine, I no longer was in pain and felt quite good.

We went in to the room – Rob asked the sonographer so first check my fallopian tubes as I had ectopic pregnancy – as they scanned all they could see was perfectly normal fallopian tubes.... as he moved the wand over...... there it was.... a tiny little dot.... where none has been 24 hrs earlier..... the sonographer said – this was an ectopic..... but by some miracle it isn’t anymore....

I will never forget Rob’s face – the face of a man who had been to battle and won!

We could finally celebrate.... we thought that was the end of the battle for our baby’s life – but it was just the beginning...... but we knew then..... that God had big plans for our baby and He was listening to us and we would not be journeying this alone.....

I was incredibly sick the next 17 weeks- hyperemesis gravidarum (severe morning sickness) would consume my body and a lot of my pregnancy but especially the first two trimesters. 

I spent 24hrs in bed and struggled to eat anything or keep anything down. Rob was a wonderful Dr and Husband and medicated me and kept me hydrated (put me on IV fluids at home) and found a medication to at least let me keep food down and stay hydrated.

We hadn’t told any family yet as we wanted to do it in a special way – no one was going to believe the miracle that I was pregnant – let alone the rest of the story – which we knew many would struggle to believe but we knew the truth along with the Dr’s here who’d seen the evidence.

Even after 17 weeks of not leaving the bed I could barely leave the house – everyone cooks outside in Uganda and the smell of cooking was everywhere – mixed with pit toilets.... it didn’t make for a great time so our house was kept locked up with me in bed.

Every trip to city for check up was excruciating! 6- 8 hours on bumpy bus as the roads were so terrible.... only pit toilets on the way which I could not stomach so resorted to peeing in a bottle under a long skirt a few times!!

The constant smell of cooking, pit toilets and other unusual smells made going anywhere very difficult.

When we finally made it to 10 weeks and we announced the news to family all at once over skype when they each all opened a package of chocolate saying If I’m getting fat so are you. A secretive friend had arranged it all for me.

It took them a little while to get it – but then the screaming kicked in and mum going – ARE YOU SERIOUS... but dr’s said.... and the tears started.

The sickness continued but the joy was increasing as we started to share our news with those closest to us and seeing them understand what a huge miracle it was just bought even more joy.

We didn’t share about the ectopic pregnancy part because it was something we felt too protective of at that stage and felt it was something to be shared in person. The pregnancy was already a miracle so we kept that part close to our heart.

By about 15 weeks I was finally starting to feel slightly stronger and would leave the house for  a short stroll sometimes and finally able to start going back to church etc. I had a few weeks where things seemed a bit better - and I thought I was over the worst of it.

Then one morning at about 16 weeks – I woke up literally having no stomach at all – I got up with very bad back pain and said to rob – where’s my tummy gone. I had started showing quite early especially for a first pregnancy and had had a noticeable bump around 12 weeks – many had been wondering if there was twins since I was showing so much by 16 weeks. But today I was flat – and I mean flat nothing there at all.

Rob and I thought it was weird but didn’t think too much of it – Rob went to work and by time he got home that evening we laughed at fact I was now Big again.... but the laughing didn’t last long... the same thing continued over next few days and the pain increased – I also noticed it wasn’t just waking with no tummy.... I could be sitting there and start to feel a very strange sensation and over an hour or so would watch my tummy disappear or reappear.

I didn’t understand it nor, did Rob or any of his collegues, so we casually sent an email to my GP just mentioning the strange symptoms as we kept in good contact with all my Australian drs.

The next day I woke up and was unable to walk – I could not move..... the pain was horrific and my legs would not work... rob could not work out what was going on – he’d never seen anything like it.....

But with the incredible wisdom God has given him and Robs obedience to listen to Gods leading he got me out to lounge room and pulled our two single lounges apart – I spent the next 24hrs laying between those two lounges.... as the time went on the pain reduced and I could walk again.

This continued on for the next few days - after some time I actually went almost 48hrs straight not really being able to move or walk and we thought it wasn’t going to help – we prayed a lot in this time and thought it was so strange.

We had my 18 week scan booked in the city so made our way to the city – while sitting in a cafe still just thinking my pregnancy was going to be a painful but funny one – we got a very distressed call from my mum and dad.

They’d just gotten off the phone to my GP – and she’d been on numbers of phone calls to specialists all over the world  - including her brother who was a specialist – when she told him my symptoms he said – I’d be getting her home now – sounds like an incarcerated uterus – incredibly dangerous for her – and baby won’t make it. Her uterus could rupture – and if that happens in Uganda – where they are – I can’t see either making it.

None of it made any sense to me and I honestly thought it was all an overreaction but I saw rob’s face literally drop.
He seemed to understand the gravity of what they were saying.

We got off the phone and I said – we will be fine I’m not going.
He said no Leah – this is not up for discussion, you are going.

We knew this would mean months apart – he could not just leave his internship but I knew Rob’s face meant he needed me to trust him.

We didn’t have passports or any of my clothes so we had to make the horrible journey all the way back to Lira after the ultrasound which confirmed the dr’s fears – incarcerated uterus.

I spent next few days on the lounge on my tummy while rob packed and while flights were arranged – those days were by far the worst and I think rob and I were both concerned it was too late- that maybe the uterus was now completely stuck and wouldn’t come undone without intervention which I couldn’t get which would mean a ruptured uterus was coming..... PRAISE GOD once again it did come unstuck and I got on the plane home to Australia.

Straight to emergency where if I’m honest the first dr to see me had never heard of it and thought I was google diagnosing it.

Thankfully within a few days my gp and specialist had got in contact with M3 team at JHH and although they hadn’t seen it had heard of it – and were able to watch themselves over some days as they monitored my uterus swinging in and out – the famous swinging uterus J

They said quite openly- your husband saved your life – if he had not started putting you between those lounges when he did – it would have become incarcerated earlier and not been able to undo itself. You and your baby both properly would have died.

It’s a miracle.

Another miracle, in an already miraculous journey. 

Dr’s said that although the chance of it getting completely stuck were diminishing the further we got along – they had never treated any one with my normal medical condition along with all these other things so really it was one day at a time and if the baby made it, it would need a lot more miracles and strengthening. And if we made it to 28 weeks they’d be happy.

We knew then God had to take control even more – but we did not fear – Rob and I had already seen him do so many miracles in this bubs life and mine already we knew He had plans for this bub.
We already knew it was a boy and God clearly then gave us the name Hezekiah – meaning God will strengthen or God is my strength (exactly what would need to happen for him to make it) and his middle name – Jabari meaning Courageous, fearless or brave.... something we could already tell our little man was.... and we had to be as well.... and Situma after rob’s late father.
It also happened to mean PEACE – peace....... that only God could give......

God was certainly writing our little man’s story.

And amongst the next stages of the pregnancy - journeying much of it while apart in two different countries – there were many lows.... my normal medical condition was causing a lot of havoc on my weak body and endocrine system and the swinging uterus continued to cause incredible pain. 

Dr’s appointments, scans, and medications increased as each week went on. 

By the time my beloved did arrive in Australia we made it to 28 weeks – but I was literally feeling like a walking zombie so heavily medicated.

But before then there was one more miracle – at about 20 weeks at a scan in Australia they sat me down and told me bub was measuring 6 weeks behind – they believed this was because of the stress of my pain and the constant swinging of the uterus... my poor baby was suffering from in utero stress.

It was feeling mummy’s pain and stress....hence the need to weigh up option of negative side effects of heavy medication against the baby not growing from the stress of the pain.

It was decided the side effects of heavy med’s and the months of drug withdrawals it would mean for bub and me... was worth it to try and get bub to grow.

At 32 weeks they gave me steroids – bub wasn’t growing – they said he was still only about a 26 week baby and we needed him to grow and for more miracles.

We prayed – at 34 weeks he had grown some but they didn’t want to deliver yet so had more steroids – by 36 week I had spent a large portion of the past 6 weeks in and out of hospital with too many complications to name and they could see I couldn’t go any longer.

We had more steroids and prayed for a miracle that he had grown.

And on the 30^th of April our little man was born a month early (8 weeks further along than they thought possible!) and he cried and was a decent 2.6kgs..... he had almost doubled in weight in those few weeks!!

God had done another miracle.

We celebrated and enjoyed those first hours with him in our arms... he didn’t even go straight to nicu as they had warned.

The journey was about to get more difficult though not just for Hezekiah but for mummy too – and for daddy ....... the hospital journey.... the withdrawals.... the not feeding and constant weight loss... mummy’s funny turns, where the red button was pressed and staff from all over rushed in and pushed rob out of the way as they tried to work out what was happening to me.... I'll never forget the look in Rob's eyes and him mouthing - "don't leave me"... this happened a number of times over those first few days.
The agonising pain of recovery...... Rob sleeping beside me helping the nurses to care for me and those long cold walks every three hours as he would help me pump and then walk through the dark corridors up to nicu to try and feed Hezekiah who was only losing weight...... then the joy of having him finally released from NICU and sleeping in with us, which then turned to fear again when as Rob held him he became unresponsive - Robbed buzzed for the Dr and he was rushed back up into NICU– 

Watching my little man struggle with medication withdrawals – all while I was barely able to hold him for long because of the way my body copes with pain and surgery.... made for a horrible 2 week hospital stay and months of recovery.

And that was before we even began the real withdrawal process of ziah and I both coming off the medications which took many months and was extremely hard.

I hid a lot of the pain of what it did to me physically but also emotionally – only I knew what it meant when ziah cried that way or moved that way – I knew how his body was feeling...how the withdrawals were affecting him... I knew because I was feeling it too.... it was a hard time....

But we constantly felt the presence of God and were surrounded by the most amazing family and friends.... and Dr’s – and midwifes and nurses – all along the way God put incredible people to remind us of all the milestones we’d made – all the miracles we’d seen God do.

Never again will we question does God still do miracles...... all we need to do is look at our little man.... all we need to do is STOP and think back over the countless miracles he did in those 9 months and then 9 months of recovery..... more miracles then I’ve even written here....

He is a good good God..... and the miracles of Hezekiah’s life have caused us – to see more clearly the miracles God does every single day!!

There are miracles all around us – if only we stopped to take them in. 

2017 So far

Its been quite some time since I've written a blog and it could be a little while before the next one comes. I have been very busy at hospital and Dr's appointments, and am now in a lot of pain and am now very heavily medicated which makes any form of brain activity difficult :)

We also had our laptop die when I returned to Australia and have found out its not worth fixing so communicating with you all can only happen when we can borrow a computer.

I returned to Australia in November to prepare for the birth of our next miracle baby ( and once again this baby has defied many odds to be here)

It was incredibly difficult to get on the plane that day.

I don't think I will ever forget the sound of my little man screaming mama, mama as we were pulled apart at the airport.

It was a very hard day.

I am very thankful that my brother Daniel and his wife Brooke and my nieces were still there.

they bought much comfort to Rob and Hezekiah during our time apart.

It was especially difficult to be apart for Christmas.

Christmas day - in two different countries. 

Rob was incredibly busy after I left preparing everything for our ministries, businesses and home to be able to come to Australia.

Dan and Brooke were an incredible blessing as they looked after Ziah most days. Hezekiah LOVED having his cousins to play with and it was beautiful to see the love and connection develop between them all.

It was incredibly hard being so far apart but I am thankful that God knew we'd need Dan and Brooke there at that time - because we had no idea how much we would need them then.

Dan and Brooke and the girls enjoyed getting to see more of the country and see a bit of what we do and their support in many ways has been a real gift from God.

Daniel and Brooke and the girls were in Uganda till the end of January, and we decided at the start of January that since we'd be in Australia for a few months it didn't make sense to be spending money on rent.

Soooooo we made the hard decision to pack up all our belongings and furniture and have them stored at our friends spare room while we are out of the country.

This is hard in one regard because it feels like once again we will be starting from scratch but saving the money makes great sense and we believe that before too long we will be able to have a place on our land so this will be last time that coming back to Australia means having to pack up all our items.

Once again we couldn't have done this without Dan and Brooke who did 99% of the packing.

I obviously did nothing since I was already in Australia when we made the decision to give house up once lease ran out at end of January.

I spent our time apart at the hospital and specialists and trying to rest and make sure this bub had best chance of being a better size and being safe.

I was also busy developing and working more on our Mbuyu Designs and Pacha Project - which I will share more about later. We've done a few fundraising stalls and BBQ since home which all helps. 

One of our Mbuyu Designs Market stalls 

Part of the PACHA PROJECT stall - all these items found a home very quickly - we cant wait to give the twin to a precious child in Uganda. 

We had a very successful day running a bunnings BBQ on boxing day with the proceeds going to The Mbuyu Foundation - very grateful to all those who came and helped out. 

Rob and Hezekiah were not meant to be arriving in Australia till the end of January and to be honest at the end of December we wondered how we'd make it another month. It was getting a lot harder and ziah was finding it harder also.

In a beautiful surprise on the 3rd of January my two men surprised me and literally turned up unannounced ! I had been stressing and getting quite frustrated why I hadn't been able to get through to them for a few days ( they were flying ). But it was an amazing surprise when they turned up.

It has been a beautiful thing to see Ziah spend time with his grandparents and aunties and uncles and all his cousins and our friends. When he left he was only a baby - not even crawling - and so for him to finally connect real faces to the photos we have around the house and who we talk to on the internet when reception allows has been great. 

There are been A LOT of changes for him - jet lag and the time difference, so many food options and choices, extreme heat ( something we do not have in Uganda) .... experiencing the ocean and a big bath, going to only speaking one language - we've had some funny experiences where he asks me for something in another language and I've had to call daddy for a translation because I've had no idea what he was saying :) one day when Rob wasn't here I even had to google it.

Loving reading time with nana

Trying all these new fruits has been a highlight for Ziah - he loves Pears!

Getting to enjoy a full size bath

First time at beach - playing with daddy
in the sand. 

Fun with cousins at the beach

Tasting what a watermelon should taste like :) 

I couldn't believe the change in him in 7 weeks - he had gone from saying individual words to saying sentences, counting in multiple languages and singing! He's always loved music and dancing - but now he sings! Aunty Brooke and uncle dan and his cousins have certainly helped his english and playing with the girls has bought a lot of development. 

It has been a huge blessing to be able to have Rob now to come to our weekly Dr's appointments etc.

Once again this pregnancy has bought HUGE challenges and pain and complications - but we have also seen many miracles. Complications they expected because I had them the first time or they thought I'd have because this is my second pregnancy and they'd recommended no more - haven't come about.

God has definitely been protecting us and this baby again.

THE MBUYU FOUNDATION MINISTRY UPDATES

Rob and I are certainly finding it difficult being so far from Uganda and our ministry but we trust our team and the people we have left in charge. We know we need to be here for the bub and that God is also using this time to help us raise much needed funds and spread the word about what God is doing in Uganda and what we are doing in our organisation but it certainly means we feel a lot more pressure to return as soon as possible with much work needing to be done! 

2017 is set to be a big year once again. 

We have many prayer points and plans for 2017.

Some which won't start till mid year once Rob and I are both back but others which will kick off once the school year starts.

READ FOR LIFE UPDATE

Our Read for Life program has grown so big that we had to have a break over the Christmas break while we looked for new facilities.

This has proved to be a HUGE challenge.

It all comes down to budget and facilities.

We found a perfect location right at the edge of the slums, in its own compound, with enough room for us to even have outdoor activities. It has 10 large rooms which would mean we could take all the students from last year and those on our waiting list, and keep our class sizes small which is our aim since we want to give the best one on one care we can. ( We have plenty of other teachers/social workers ready to come on board to keep class sizes small - just a matter of class rooms)

It would also allow us to have classes to be able to do adult reading classes during school times and would allow us to start skills training with the mothers/aunts/grandmothers connected to Read for Life.

We have women desperate to start this, and we have teachers ready - we just need the facility.

Its in great condition and has good toilet facilities.

But sadly it is out of our budget at the moment. It is approximately $2000 Australian dollars a month to rent. Even though it would be perfect and allow to do so much more and keep the children nice and safe, at the moment finances don't allow us to take this place. Unless God does a miracle - which we know He can if we are meant to have this place. 

Other than that everything within the slums area we have looked at is quite unsafe and unsanitary and very, very small. The majority of them aren't in compounds, so safety would be an issue and we'd be sharing the rent. Since the slums are so crammed we have only been able to find facilities where we have to rent buildings that are already being used ( except for the first place i mentioned that would be completely ours) 

Most of these places are nursery schools, or primary schools, which would mean we can only do our program on the Saturday and on the extra days during the school holidays.

We are still trying to see if we can find one that will be safe and sanitary at least and allow for the amount of children we have.

We only have a matter of weeks till we are due to start so we are in need of a miracle.

Our teachers, and even our students are ready to return. We have children turning up often to the previous site trying to find out when we are starting back!

So please be at prayer about this !

SKILLS TRAINING & MEDICAL CAMPS

Our skills training with the women will start as soon as a facility is found and Robert returns.

Our medical camps will be kicking off mid year again when Robert returns to Uganda also - we have Dr's and surgeons ready who have agreed to be on team and are excited about helping with our fistula and other medical repair camps. 

C-SECTION KITS AND SCHOOL BACKPACK FUNDRAISERS

Over Christmas we were able to raise enough money to buy new school backpacks for 50 children connected to The Salvation Army children's home. This was done through the generous support of many of you.

The children will receive their new bags when school returns next month.

We will be sure to have our workers take photos and videos as the children will be extremely excited and grateful for these bags.

We also were able to raise money to begin our Emergency C-section kits.

Through Rob's work as a Dr and his personal experiences and through his discussions with his other doctor friends and colleagues - one of the many reasons women are still dying from child birth, even when they are in hospital is because they can not get the emergency c-section they need. This is usually due to very basic items not being available in the hospital ( gloves, surgical blades, sterile cotton, catheters etc) Women die daily due to basic items not being available for emergency c-sections. Items that cost very little.

So we have come up with the idea of putting together emergency c-section kits and donating them to local hospitals.

We have worked out that for $50 we can buy all the items we need, and cover the cost of transport and everything in relation to these kits.

We were blessed when over Christmas numbers of our friends and supporters in Australia heard about this idea and got behind it - so Daniel and Brooke and Rob got to work with making up these emergency c-section kits.

We look forward to seeing these kits save lives and we know that this part of the ministry is going to grow and expand.

SEARCH FOR LAND FOR THE MBUYU VILLAGE & FARM 

Our search for land continues - Rob, Daniel and Brooke actually found an amazing piece of land not long before Rob returned to Australia. It is right on the lake and perfect for every aspect of the ministry. It is very large, and has amazing potential not only for our Mbuyu Village and work with children, but for farming and skills training for men and women.

It is above what we were planning to pay due to the location, the lake and the quality of the land and soil. But we intend to follow this through and trust that if it's meant to be ours God will provide the money.

We will look more in to this land when we return. We trust if its meant to be ours it will still be available when we return.

MBUYU DESIGNS AND PACHA PROJECT

Our Mbuyu Designs project has been going well - with us selling many beautiful Ugandan items made in Uganda by various women's and disabled young people groups.

We have sold them through Markets, events and on facebook since we have been home. This has given us a great idea of what skills are worth training our women in the most and all proceeds that have been raised from this project are going back in to the skills training for women from the slums.

along side of this our PACHA ( twin) project has been going GREAT - this is the project where women (or men) from Australia knit, or crochet various toys or baby blankets. We then sell one of the items here in Australia through our Mbuyu Designs stalls and then the other item which is exactly the same is donated on their behalf to a child or new mother for her new baby in Uganda.

This project is proving to be a HUGE success with every item selling within moments of me listing them online. We look forward to being able to return with these beautiful items and see the joy that they bring to the children.

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We have many other projects under works for later in this year but for now our current ministries will continue while we are in Australia having our baby and trying to do some fundraisers as well.

We have a movie night coming up in March as a fundraiser where we have booked out local cinema to show the Queen of Katwe ( a movie about Ugandan slums). 

If you are interested in attending this event please let us know and we will get details to you. 

We plan to have other fundraisers also before we return home.

We thank you for your continued support and we will try to keep you up to date with various ministry events and photos over the coming month, even though we are not there.

We will be having our baby mid February through a csection ( bub will be about 4-5 weeks early) and we will most likely have to spend a few weeks in hospital due to my condition and the bub and me having to be monitored in relation to the medication I am currently on.

We look forward to sharing the news of our next little miracle when they arrive!

GOD BLESS