Looking for another miracle

 I'm not really even sure how to write this - because it will be long... And I don't know where to start... Because its a long story. 

It may be depressing... Because it is depressing at times... It may be uplifting... How I pray so.... It may not be relevant to you... And that's ok. This is my story. I pray you'll read on, and maybe, just maybe, it will encourage you to keep going... Even when all you feel is blahhhhh. 

Many of you will know I was born with a rare medical condition ( about 1 in every 1 million in Australia). It can affect people to various degrees, and show up in very different ways, depending on the person. So no case is exactly the same. 

For me it meant early puberty, chronic bone and neuropathic pain from as young as I can remember, countless painful bone and reconstructions surgeries - which equates communicably to years spent in wheelchairs, on crutches, in plasters, hospitals, rehabs and physios. I've been on more medications than I can even remember, been on and off various medications, been addicted to some, experienced long and painful withdrawal processes from medications. 

I've had more specialists than I can even remember, and the majority of them had no idea what McCune Albright was... Let alone had they ever treated anyone with it. 

When I first started breaking bones and going through early puberty and having other issues, no one knew what was happening. It took many years to get a diagnosis and even then they couldn't tell us much. Over the years more research has been done and we've learnt more - but it hasn't necessarily bought more hope or help. 

I have always tried to have hope, work hard and be positive. For me, my coping mechanism has always been do more... Help more.... Focus on others. Not everyone finds this helpful - but for me it was and is still the best way for me to cope - by focusing on what I have, by doing what I can do, especially to serve others and to improve the lives of others. 

My parents could always tell when my pain was bad - because I'd clean more or do more things- I'd be doing more ministries at church or helping someone else with their children or whatever it may have been. People couldn't tell how much I suffered because I didn't let them, I tried to focus on others instead of focusing on what I was suffering. 

I never once have believed God gave this to me ( anyone that says he must have or something along those lines does not know the God that I know... Doesn't mean He can't use it to help encourage others or didn't allow it... but he didn't cause it... if you need explanation - email me on that) 

Well many of you know I've experienced many miracles in my life - despite the health challenges and diagnosis. 

I was never supposed to have children - I have three boys now!

I suffered very rare and dangerous complications in those pregnancies - but God was faithful and here they are. 

Hezekiah was actually an ectopic pregnancy. Diagnosed medically as an ectopic pregnancy. That impossibly moved... In the process of being transferred to the city in Uganda for treatment.... it corrected itself?! The baby that was in the fallopian tubes, now in the womb, and fallopian tube completely ok... 24hours after the first scan..... minds were blown.... prayer works! My faithful little brother and husband prayed for the baby to move, and it happened!

So we've seen miracles - not just health ones. Many financial ones - we've had times when we've literally had nothing, and have school fees due for one of Rob's brothers... and suddenly the exact amount we need ends up in our bank account - when we haven't even told anyone.

Or we need food - and suddenly someone delivers us food. We need transport - someone gives us a car, when again they didn't even know we needed one. 

Constantly we are seeing little miracles. 

But in 2017 we saw a really big one... It was November 18th 2017 - around 8.10pm 

Let me backtrack a little bit. 

My younger brother ( who is a great man, of great faith) found out that one of the Pastors from Uganda was coming to a conference in Perth. Pastor Kayanja is the pastor at Miracle Centre Cathedral in Kampala - Dan ( my brother) had attended their big revival meetings when he'd been in Uganda and had seen God do amazing miracles on these nights. ( Rob and I now attend MCC when we are in Uganda) 

You see, 2017 saw us back in Australia having Ezrael - and it was a hard road. Since Ezrael was born at 34 weeks - and had struggled at the start - the normal withdrawing off the medication that me and our boys have had to endure after the pregnancy had to be postponed for longer than we had planned. So when Ezrael was 4 months old - Rob had to return to Uganda. We were left behind to start weaning off the medication and get well enough to go to Uganda. This was not an easy process - and was very, very slow. Slower than we had done with Hezekiah. Ezrael just struggled with the weaning process - super unsettled and struggled to eat with the weaning process. We had thought we'd get home by October (Rob left in June) but November came and my Doctors said, with the way we were going - it would be highly unlikely we could return to Uganda until probably March at the earliest! This seemed so far away. But I also knew we couldn't rush the weaning process. All of this hard trial and the constant struggles and chronic pain and my chronic health issues - lead Dan to say - "Leah lets go to Perth for this conference  - lets go believing for your healing". 

In all honesty - I wasn't that keen on going. I knew God can do miracles - I have seen Him do many (Hezekiah & Ezrael to name just two.... but also my brother Jacob and many others) 

But I had been sick my whole life - I was born with McCune Albright Syndrome - and while I always prayed for a miracle and had been prayed for many times - it hadn't happened. It wasn't even that I didn't believe it never would - it was more that I prayed it would, but I also needed to just focus on a day at a time. Plus, I thought spending all that money to go to Perth - I'd rather save the money to help get us back to Uganda when the time comes. 

Dan didn't let my hesitancy stop him - he pushed ahead and booked and paid for the whole thing. Arranged it all (including my SIL and dad to look after Hezekiah) And off we went to Perth. As everything fell into place, I put my complete faith and trust in believing for that miracle! 

We went along to the Saturday night and thinking it was Pastor Kayanja who would be preaching that night - we were surprised when they said that he still wasn't in the country and a different Pastor would be preaching. Someone I'd never heard of, but also an African Pastor who now Pastored a church in Toowoomba. He preached a powerful sermon - we forgot about the focus on healing and just focused on the message and being present. The night was almost to an end, when the Pastor offered if people would like prayer for healing, they could come to the front and people from the combined churches from around the city would pray for you. Dan and I kind of looked at each other, do we go or wait for tomorrow for Pastor Kayanja ( it was his ministry that had lead us to come) .... but we both were like - we came for Jesus - it's God who heals... lets go. Many people (including Dan) surrounded me and spent time praying for me and spoke beautiful, encouraging words over me. After maybe 10 or so minutes as Dan prayed I suddenly felt pain leave my back (now remember - I don't ever remember not being in chronic pain - its been a constant companion since childhood) so it was a really strange feeling - and then as they prayed pain left my hips and legs..... again so strange.... suddenly as they prayed again for any remaining pain anywhere to leave.... it did..... I suddenly felt - free!? I don't even know how to explain what a difference it was. I felt light. 

I went up on the stage later and spoke to the Pastor about what God had done - he got me to do things I hadn't been able to do before (bend, jump) I broke down... no one could have known what it meant... or what I'd been through. Mum and Dan obviously had some idea so it was huge for them too.... but unless you have lived in chronic pain, rare syndromes and chronic health struggles - you can't really understand. 

We went back to the motel that night and it was just like walking on a cloud! We were all on a high. When we got back to the motel I was almost due for more medications. Now its hard to explain or a lengthy explanation - but Ezrael and I were both in the process of weaning off heavy pain medications (opioids) If you've been through this you may have an idea of how hard it is. Ten times harder with a baby also experiencing it. Ezrael was a super unsettled baby  - he barely slept - you'd lay him down at 7pm for bed at night - and by 8pm he would have been awake probably 5 times. Most nights I slept with him literally sitting up on my chest. Because of how hard the weaning was on him - we had changed the dosage and were only going down 2.5mg a week - not much at all. We were still on more than 1000mg of various heavy pain medications. 

When I realised it was almost time for medication - I said to Dan - "well if God's healed me - I don't need these meds anymore! " 

Now stopping any medication - or even increasing the amount we went down by is incredibly dangerous - for me - but also obviously for a 6month old baby. Dan said - "lets ask mum"(who was having a shower). When she came out, we asked her opinion, and being a woman of great faith.... she agreed - I didn't need them. 

So then I shocked them by taking them all and flushing them down the toilet!! There was no going back. We put Ezrael down to sleep - and wondered what the night would bring... we all went to sleep - believing if God had healed me of pain, then he had also dealt with the root causes of my condition, and that I also didn't' need the medication anymore, that He would protect us. It was such a strange feeling laying down and not being in excruciating pain, and to be able to just fall asleep easily. 

The next thing I knew it was 6am, and Ezrael was sitting in his cot whimpering. We all woke up and couldn't believe we had slept through the night! No withdrawals! Ezrael was hungry now but seemed fine in every other way. He didn't scream like he was in constant pain. His cry was different now (withdrawing babies have a distinct high pitch cry). 

It truly was a miracle - he was smiling, and giggling. Like a completely different child. I had no headache, no sweating or excruciating cramps or muscle spasms. NOTHING! We had gone off every medication in a matter of hours and we were fine. A week before, going down 2.5mg was knocking us both around! 

I have never felt so much joy and freedom! We spent the day walking around Perth. No pain, no withdrawals! We went back to the conference that night - as we walked in - I started to have pain in one small spot again. It was very strange. I was like NO NO... you are not coming back. God has healed me. Pastor Kayanja preached a powerful sermon, and I went forward for prayer again, for not just the pain to leave but everything attached to it to leave. They prayed and all pain was gone again and everything felt new and fresh! 

We left Perth the next day completely changed. I'll never forget the joy of being able to call Rob and my Dad and explain what had happened. Or the moment I shared with all my family a week later how life had changed. 

And seeing my Dr a week later - she knew instantly something had changed. She said she could see it in my eyes - the pain was gone. She could see Ezrael was different. I shared everything with her. She cried and couldn't explain it. She agreed even just going off the medications and nothing happening, was just a miracle in itself. She knew everything was different. There were so many other symptoms I experienced and was struggling with that I was waiting for tests and treatment of.... but they all left in that weekend! Too many things to mention here. 

I needed theDr's clearance to fly home - she gave it to me - only a week after saying it would likely be months and months before we'd be ready! 

Friends came forward and said God directed them to book us tickets home to Uganda and paid for it all. Within 14 days of being told we may not see Rob for another 5 months at least - we were on the plane flying home to Uganda. Healthy and healed.... pain free! 

For the next 2 years I lived completely well and pain free - no McCune Albright issues at all ( had malaria and typhoid but no chronic 24/7 sickness!) We were able to focus on our boys, and building up the foundation because my health was no longer an issue. The change was huge. I was the fittest and healthiest I had been EVER. 

So that is my big miracle (as well as our boys obviously) But it was a big one for sure! And living free of sickness for that time - was an incredible gift. 

Now comes the hard part to understand. While I was pregnant with Adlai, my health started to deteriorate. I kept trying to push Rob to let us have the bub in Uganda - as now my health was fine. He wouldn't hear of it at all. I seemed to be suffering from HG again in this pregnancy. But besides that, I wasn't having  a lot of the other issues in the early stages that I had with the other boys. But once I returned to Australia - around the 18 week mark, once again, the swinging uterus begun, and the chronic pain and other issues. They put me back into the High Care team at John Hunter Hospital and honestly, I felt pretty deflated. I couldn't understand why this was all happening again. I tried my hardest to justify it all saying it was just the pregnancy and as soon as it was over I'd be all well again. I didn't know if that was true or not. 

My Doctors, even though they had seen the miracle, and couldn't explain it, talked as if it was McCune Albright as always and it was what it was. (none of my conditions could or would suddenly just overnight be completely gone for two years... that doesn't happen so there was no explanation still for the miracle that occurred).

I held on to the knowledge that God was good, I had received a miracle, and despite what was going on now, I was carrying another little miracle, and that whatever the future looked like, we'd get through it. we were really praying hard that good health would return when Adlai was born. Having to go back on the heavy medications during the pregnancy was extremely difficult for me. Knowing what I knew about the journey it would take for me and for our baby... and then the process of having to get off it. It almost broke me. But then when you are told its better for the baby to be on it then off it, you do what needs to be done. So I did. 

Adlai's birth was by far the hardest, after a life time of medications and with the way my nerves/muscles etc work - it is hard now to find medications to actually help. I was on the heaviest pain medications available after the C-section. This meant no breastfeeding at all for 10 days as it wasn't safe for Adlai. The first 10 days I actually don't remember - I need to look at photos for things to come back. 

In those days I was in high care maternity (they made a special room up for me - I had my own nurse/midwife - and she has no one else to care for except for me) - we have always been so blessed by JHH care. I spent those 10 days (remember it was in the middle of COVID lockdown) in a room with no windows and only seeing Rob and my Drs and nurses. And occasionally Adlai, when they bought him down from NICU. I spent my days in and out of a semi conscious state, still in pain. Often hallucinating from the medication. 

The first day they got me out of bed (about day 5) was excruciating. I've had more than 16 surgeries in my life and while I can't remember much from that week - I remember that. 

After 10 days in high care we got moved down to the ward for another 5 days stay. 

Going home, it was hard to realise that while we had this precious little new life, I was on the same road medically and physically. I knew what the next 6 months were going to look like. And I struggled with that greatly. I thought it would be different this time. I'm thankful for Rob, who was the only one who I really bared my soul to on how much my faith was being shaken. 

I kept holding on to the hope - that once healed, off the medications - I would be completely well again. 

I can't go into all the details of what those next 6 months looked like - but it was much like the previous recoveries from the pregnancies and births. Endless pain, endless medications and physios, and endless joy too at the gift of a new life God had given us. I tried always to remind myself - that no matter what - me having children alone was a miracle! 

The withdrawals were tough - but thankfully - not as bad as they were with Ezrael! So that was certainly an answer to prayer. By September/October I felt like maybe I was on the mend and that was feeling really good and felt a lot quicker than with the other boys so that was making me really hope I was going to be ok physically. My Doctors decided now I had managed to wean off all the heavy meds, that they would try and wean me down off the steroids I had to take during the pregnancy. 

It seemed to be going ok - except I felt like I was dragging myself around. But I just put that down to the weaning process. Then I got sick with a chest infection - and it would not leave. More steroids to try and help it go - it did for a few weeks, so we started weaning again and then come Boxing Day, it was back and I felt pretty sick. For the next week I really struggled to get out of bed or to function in any way. I felt sick and strange and couldn't work out what was going on. My GP was trying to get in contact with my Endocrinologist, but being the new year break, that was proving difficult. She was concerned I may be going into an adrenal crisis. I increased my steroids but nothing was working well. 

Finally, they decided I needed to go into hospital. When I showed up and showed them the identification card I hold for the medications I take - I was whisked straight through - immediately had a bed and put almost straight away on to IV steroids. This was my first adrenal crisis - so I didn't have any clue how seriously they would take it. Thankfully they did - because apparently many hospitals/doctors don't and people die. 

I spent the next 3 weeks in hospital. They stabilised my cortisol levels and everything else - and while some symptoms improved - I got worse in many other ways. I was losing vision and feeling down one side of the body. I went in being able to walk - by the time I left I could not walk unaided. After weeks of trialling medications and various tests - I was diagnosed with inflammation on the brain. No idea whether it came about from the stress of the adrenal crisis, or an infection, or if it was a by-product of the chest infection I'd had. Recovery would be a long road - and the easiest place to do that was a quiet place. Thankfully we had a precious friend who took me in. 

A clean diet was recommended (more friends jumped on and did my meals and would deliver them ) Rob would come and do physio with me. But there would be no contact with my boys. I couldn't cope with light, sound, or any noise at all. I hadn't seen them in 2 weeks already and Doctors could not tell me if recovery would be 2 months or 2 years. I needed a walker to even go 10 steps to the bathroom. I couldn't shower unaided. By the time we were at my friends house - I could barely see out of either eye. 

It was one of the scariest and loneliest times of my life. Back on lots of medications, with what felt like very few answers. Lonely for my husband - but knowing he had to stay at home with the boys. I only saw him for a few hours every few days. Missing the three boys - Adlai was only 8 months. He changed so much in that month I didn't see him. 

As I sit here and write this, I struggle, to relive those days... They were dark and scary and I felt I couldn't quite communicate to people how bad I was without scaring them too much. I already saw the fear in Rob's eyes whenever he'd try to do physio with me, I knew, he knew this wasn't going to be an easy or quick fix. 

He was supposed to be studying for his exam, the most important and hardest exam of his life, but instead he is having to be mummy and daddy to our boys and try and care for me in between and run the organisation too. 

I am so so thankful God did a miracle in that week. One of my precious friends started coming after work each day to do communion with me and to pray over me. The friend I was staying with would join in, along with my younger brother when they were there. Each day after we started doing that I started to feel stronger. Miraculously. It's like it was reminding my body - what Jesus died for on the cross. To take away sickness. 

Then one night - loneliness was closing in, fear was closing in around me. Like a heavy black demon. That's what it felt like. Thankfully - friends in Uganda were rising up to pray. They prayed all day (all our night). People here in Australia and our friends in  the USA rallied to pray too. 

I felt like I had this choice before me, life or death. Faith or fear. If I gave into fear - I felt it would consume me, and that recovery wouldn't even be possible. I could talk more and more on what happened that night spiritually - but that's more a conversation over a cuppa! All I know is I finally fell asleep about 2 am knowing people all over the world were praying for me. 

When I woke at 7.30am - I was shocked - it was the first time I'd slept like that without constant pain, excruciating headache and having to take more meds through the night. I tried to get up. I got up out of bed unaided. I walked to the blind and opened it. I was able to cope with it open slightly! I decided to try and walk to the bathroom on my own. AND I DID! 

When my friend came in with my breakfast she was IN SHOCK! She couldn't believe it. She said goodnight to me the night before and I was undercovers, unable to do anything for myself. And here I was sitting up in bed, with blind open, having been able to get up and changed myself! 

Rob cried deeply when he saw me. Something had changed. It was a miracle. I recovered so much in the next 48 hours, I decided I wanted to try and go home. Noise was still a bit of a trigger - but I missed the boys so much! So I went home! More than a month away from home, when I thought I was just going to be in hospital for a few days! What a homecoming! What a reunion! 

I went to see my doctors a few days later. They expected me to still be on my walker, sunglasses on etc. I could barely hold a conversation and any noise would cause me to cry days ago.... and I walked in. Smiling - they said - even with what I had done (medications, clean diet) nothing humanly done would have made such a significant difference in that length of time. 

I went home, knowing God had done another miracle. And believing healing would continue to happen. It was a journey and a process - I continued to wear headphones for about 6 weeks after that. I couldn't read or touch a computer for about 3 months after returning home - but I have gotten there overall with the brain inflammation. I'm still doing what I can to continue to improve it. But God did the miracle. 

I thought finally - we are on the road to getting back to the 'new me'.... the healed me after 2017. . . but April was going to bring more hardships. I felt like I had been improving - and because I did improve so dramatically from the brain inflammation I probably missed the early signs that something else was going on. 

I started to notice that I was getting more and more exhausted again - I was starting to have some strange episodes and felt like my health just hit a brick wall. I had my check up with my endocrinologist after my hospital stay.  He was happy to see me doing better after the brain inflammation. But he also had some bad and surprising news. He said - it was clear to them now - that my body is not making cortisol anymore. They had tried weaning me - and it had sent me into an adrenal crisis. Before with the previous pregnancies, I had needed the extra cortisol to cope with the stress of the pregnancies on my body - but after I'd been able to wean off. But this last pregnancy and all the medications had completely destroyed my adrenals and pituitary gland. They were fried. 

Which meant the diagnosis of Addison's and life long steroids.  It explained all the strange episodes I was now having, and the new challenges health wise I was facing. This diagnosis came as a big shock (and came the week of Rob's exam of course) so we put it on the back burner to focus the week on Rob and then to look at it after. 

It's very hard to explain what it means to not have any cortisol in your body. Its a life threatening condition. It has to be managed well - or can not just result in death, but other life long complications. In simple terms - I have no fight or flight mode anymore. My body can't cope with any physical, emotionally, mental stress without the aid of steroids. And even then, it struggles. It's a constant battle to get the dose right for each day. If you lived a life all by yourself on an island with no stress it would be a lot easier! 

Many days are spent like this (photo thanks to Ezrael)

As we are learning more - and as I'm dealing more with the symptoms of it, and the side affects of the steroids and other medications I now have to take. The understanding of what this means - is heavy. Trying to work out how it also fits with my other health challenges/including anaemia.  Learning to not only carry tablets everywhere, but emergency injection kits. And having to teach others how to administer it if needed. 

I have mini crisis's often in the middle of the night when one of the boys has woken. One night Adlai had a fever, Rob and I were both up caring for him, my mama heart was hurting for him, and I was tired. When he was settled in bed, we went back to sleep. I woke up in the middle of a crisis an hour later and had to rush to have more steroids to settle and stabilise my body. 

A car pulls out of me in traffic - my body has no cortisol to give a burst to calm down (which is what normally happens in sudden stressful situations) . 

Very thankful for a husband/Dr in one

You get a cold and you fight it off because of cortisol helping the body to do that - I don't have any - so more steroids are needed to help fight off even the slightest thing. But then steroids also suppress your immune system! So it's a constant battle.  

Some days you wake extra low on cortisol and then can't get out of bed - or run low all day. 

I'm apart of a support network now and that has been wonderful to help and understand everything - but can also be quite disheartening to see the lifelong battle it is for people, and also to see the number who die from it or from complications associated to it. But I am thankful that there is a support group - even though its rare - its not as rare as McCune Albright Syndrome which I've never seen a support group for. 

Each day is different and you can never know how you will be really - so it makes it hard to plan. Having one good day, doesn't guarantee a good day the next (actually usually the opposite because you are exhausted) 

And just because you look ok doesn't mean you are (anyone who deals with an invisible illness will understand that) In fact for me, generally on the days I 'look' better, it's probably a bad day, or had a bad night... because I've gone to more effort to hide it 😆

For me being normally being a people person, I find even being around a lot of people more challenging - which I hate - because I don't feel like my normal self anymore. 

This is a strange journey - especially when we are in a season of waiting. A season that feels like we are just in between. 

Sharing my journey at the moment hasn't been one I have really had the energy for, but I also realise people do not fully understand what we are going through, and that makes it hard. 

I also, always... want my life to count. Not just when we're in Uganda, but wherever I am. Whether stuck in bed, on the lounge, or home-schooling my boys or speaking about injustice at an event. 

I do not want to stop believing in a good God, despite how hard our circumstances are right now.

 I do not want to stop counting the miracles that we have seen God do before, or the ones I see around me each day. Especially the three running under my feet, or comforting me when I am not well. 

(Thankfully Hezekiah walks around singing A Million Little Miracles at the moment, so that reminds me often of all the little miracles and big one's we have experienced before!) Check out the song here: https://www.youtube.com/watch?v=2UXkAYO5hwg

I do not want to allow another health challenge to steal my faith, nor my joy. 

I want to allow even the hard struggles of life to refine me, I want to be more of who God calls me to be. 

I want to be that person who believes and sees miracles, and keeps seeking them, while also walking through the valleys with my head up, accepting that whatever the outcome - God is good and that I still have a choice about my attitude through the journey. 

I want to know that if I died tomorrow - I did so living a life of courage and faith and peace in all the circumstances I faced... and that maybe, just maybe, I was able to inspire someone else to keep pressing on... and to count the miracles and faithfulness they have seen... even while looking for another one. 

Welcome Home Gift

WE HAVE BIG NEWS......

We recently welcomed another member into our family. 

Her name is Gift and she is 13 years old ( 14 soon) 

I ( Leah) first met Gift on my very first trip to Uganda in 2010. 

At the time she was a very frail and sick little girl. She'd actually only just come out of hospital that day and was back at the children's home I was visiting ( the one where Roberts grew up).

She was having issues with her health again, with complications of HIV. Having been abandoned on the side of the road as a toddler, her body was weak and frail and she had been picked and taken to The Salvation Army childrens home. 

Rob had been there when she was bought in so had known her from that first day. 

When I met her that first day - she quickly attached herself to me, and I to her. She looked about 2 years old, but was more likely 3/4 ( we don't know her exact age obviously due to her being abandoned and very sick when found). 

I spent the next week with a little shadow with me, she went with me everywhere I could take her. She'd sleep near me and laughed and smiled often, which was something the managers said she didn't do very often. 

I remember in that week that God was writing her name on my heart very strongly. I'd love to give her a home one day I had always said.... but didn't know what the future would hold. 

Maybe thats why I didn't give Robert much notice that first time I met him that week, I was too busy playing mum to a gorgeous little girl :) 

Fast forward 3 years and I am back in Uganda and Rob and I reconnect and fall in love ( or I did... He had done that 3 years earlier apparently ;) 

The topic of Gift came up - and we both said if one day she needed a home, she would find one with us. At the time she was very happy and settled at the childrens home, obviously surrounded by other kids who had become like siblings, and staff who were like her mums and aunties and uncles. 

2014 visiting with Mum and Dad

012So we made the commitment to visit her when we could ( she was many hours from where we ended up in the North of Uganda) and we would provide support for her whenever it was needed. Despite how little we got to see her over those years ( usually only once or twice a year) she told all her school friends she had a mzungu mama. 

She had the opportunity to meet my parents and youngest brother and sil and nieces when they were in Uganda. She was very shy at those visits! 

Late 2016 pregnant with Ezrael

Fast forward many years and a month before I was due to return to Australia to have Adlai - we got a message that the children's home Gift was at would be closing ..... and that obvioulsy Gift had no one. They knew we loved her and so of course we said we would take her. 

I hopped on the plane not having any idea of how that would all work out. Gift had no idea and it was too late for me to get to the village to visit and tell her. 

Roberts did some of the paperwork and speaking to necessary officials etc and we thought it might all happen - then we find out before he returns to Australia that no the children's home isn't closing now and so if we want to we can still apply for custody etc, but she can remain where she is for now until we get back from Australia. 

So we decided we would continue the process when we got back to Uganda so we could meet with Gift and see how she felt and go from there. Thinking that would only be 6 months or so it didn't seem like a big deal .... then Covid happened of course. 

But everything seemed fine since we knew she was happy and settled where she was so we werent' worried.... - until about a month before Christmas 2020 - we get news that, no the children's home is in fact closing and Gift will definitely need a place to go, and that it will be closing within a matter of weeks. 

My heart hurt so bad! Here she was needing a home, a home we had always said we'd provide - and we weren't even there! 

I cried a lot of tears in the shower .... not knowing what to do. 

Our last visit before I came 2019

Thankfully God had it sorted, we made contact with the probation officer and they video called us and interviewed us. We explained the situation, and explained that while we werent' there now - our SIL and brother are living in our home and there is room for Gift and they will love her as part of the family. 

Months went by - literally, while all the necessary departments tried to sort themselves out! The children's home was closed, and all the other children went to extended families or people they knew. Gift meanwhile was left at the children's home ( with the managers ) waiting for news of what was to happen...... it was terrible not having any idea of how she was feeling about it all... we weren't even sure what she knew... did she even know she was coming to us? Did she know we weren't actually in Uganda and she'd be going to stay with our family??

Anyways - after some time we finally got the call that it was sorted - we were granted custody and she would be dropped to our place in Uganda in two days time. 

She would be free to live and be raised by us for the time being and when we can get back to Uganda we can make it more official if thats what everyone desires. 

So finally - Gift came home! 

Honestly it was a huge emotional thing for me.... I'd dreamt of this... but now I wasn't there to help her through the process. I'd orginally dreamed of taking in this little girl named Gift... now she's a teenager... with all these huge emotions I'm sure about what has occured the last few months but again....we aren't there. 

It was also a huge emotional week for me as I was facing some new health challenges - so on one hand I had this new horrible new diagnosis we were (and are) still processing, Rob was about to sit his exam and Gift came home... all in the one week! 

But at the end of the day.... the only thing that mattered was that SMILE!

So precious seeing her sitting at our home

She's home

Doing homework and study with our sister in law

She was happy - she instantly connected with little Eden ( our nephew) and my sister in law had made up a nice bed for her and they worked hard to make her feel welcomed. 

Within a few days she was registered into a new school right near our house and was settlnig in.... we finally got to have a video call and to hear the words that She is happy to be home with us and our family... whatever that looks like at the moment was incredible. 

In her new school uniform

She's been settling in beautifully and we know she is loved and cared for. 

Who knows when we will actually get to live as a family, in the same country, or same house.... but in the end I guess it doesn't matter - because she is safe, loved and cared for. 

Home is... wherever we are for now :)

                       THE WAKANDA'S CURRENT PLANS 

Well this is a blog that I have tried writing for many months now. 

After all the questions and emails we get asking where we are up to with everything, its something I've been wanting to do  - but I think I've been putting it off because I haven't known how to share it, or maybe haven't wanted to make it real by sharing it out publicly! 

So as you all know we are still in Australia. 

We were suppose to return to Uganda originally in July. But at the time Uganda was still in lockdown and Australia's border closed ( still are - you need permission to leave) 

Robs visa was about to run out, so the suggestion from immigration was made that the only visa we were eligible to apply for without leaving the country ( which we weren't allowed to do anyways) was the spousal visa. 

We had never done this before because we'd never been here for long enough that warranted the huge expense. So we made the decision (since we had no choice) to apply for the spousal visa. We did all the necessary paperwork and spent all our savings to apply (lots of paperwork from various people to confirm we "really are a couple and married for right reasons ;) "

We were told that it could take anywhere from 6 months - 2 years. It wasn't till later we also discovered that during the time of processing - Rob can't actually leave the country long term, and can only leave with permission. This came as a big shock, but just have to accept the process. 

Thankfully within a few months, Rob received a bridging visa - so is now able to work here (when passes medical exam) and can receive medicare etc. And they've told us that because of our length of relationship and having three children they will most likely not put him on a temporary visa but go straight to the permanent visa - which should mean it won't take as long - but they can't give you any idea of how long. 

So because of all of this - we made the decision that if we have to remain here until Rob can get permission to leave - then we can't waste this time. 

So Robert started the process around September last year to sit the Australian Medical Council exam. 

This is a huge undertaking to even just apply to be able to sit it. Then costs a small fortune and once accepted (they have to verify everything internationally etc) the journey of studying begins. 

Since September Rob has been spending the majority of his days/nights studying for this exam. Its an incredibly difficult exam, with the majority of people not passing it the first time. 

(even many of my specialists who have sat it have all said they didn't pass it the first time and it has been said that the majority of Australian trained Drs would not pass it if they had to sit it) 

We had to wait for an exam date- we had been hoping for February, but were given the date of the 16th of April. At the time (December) that felt forever away.... but we had no idea that in only a few weeks I would be spending close to a month in hospital and diagnosed with inflammation on the brain and subsequent diagnoses of other things later. 

Rob has spent the last 8 months, either caring for me (with all the health challenges I've had) and caring for the boys - or studying. 

With most days him studying from early hours of the morning - till late afternoon, when he would have some time playing with the boys and having dinner and helping with bedtime and then he'd be straight back into studying until around 1/2am. He has worked so incredibly hard for this. 

I know he feels he hasn't done enough, but then he knows and is at peace that at the end of the day, the only thing that has stopped him studying, has been caring for me and the boys and he always puts us first. 

We believe God goes before him and will honour him and his hard work at the exam on Friday. 

So for us, this means that for now - home is wherever we are all together. 

Our hearts are still very much in Uganda. Our home is still there (we are thankful for Rob's brother and wife who are looking after our house and dogs) and our ministry continues on with the amazing team we have. 

We ache to return to Uganda, and our boys miss their other home and ask often when can we return. They still know that while we have now been at Nanna and Poppy's house for a year, that they still have another home elsewhere that they look forward to returning to. 

I have found it really difficult to come to terms with not being able to return yet, and very difficult to not now when we will be able to move back there - or even when we will be able to visit. 

( we currently can't even leave to go back and visit yet with Australia's restrictions - our plan is that as soon as we are able we will return to check on everything and so the boys keep it all fresh in their minds) 

Our team in Uganda have been amazing and they are working hard to carry on the work of The Mbuyu Foundation. We continue to see lives changed and we are excited for what this year will bring as restrictions are lifted. 

We are working hard on our end to raise awareness about the foundations work, and pray that God will give us more opportunities to raise funds, speak and share what we are doing there. Doing that enables us to be able to feel a part of the life changing work. Its incredibly special when I get up and share about child sponsorship and then see the very children that we know and work with and teach getting sponsored. So that does bring great joy. 

So for now - we are focused on the exam and getting that done, then once he receives word he has passed and is registered here (believing in faith) we will then look for work for Rob and see where we end up. 

Gods timing and plans can be funny sometimes, and can make us question a lot of things. But when you stop and really look closely - you can see all things working out for good. 

My own health has been a challenge, (with a very difficult diagnoses only coming through in the past few days that will mean great challenges and close monitoring for me for the rest of my life..... we are still trying to understand and get our heads around that (just focusing on getting through exam first)... All of this we will need to have stable before we could return as well. So all that is there too. 

But we have seen God do so many miracles for us in the past (obviously in our boys, my health over the years, financially and with our work in Uganda.... even just this year with how I was with the brain inflammation to where I am in that regard now (that's a story for another day)

So we trust in Him... we trust in His goodness and in His faithfulness. He has never failed us before. 

We trust the work we are doing in Uganda in to His hands, because at the end of the day - He cares even more for those precious people than we do. 

And try to remain in the moment and count this time as precious in being able to spend time with family and friends.

 Its also a good chance for us to learn patience and remembering that we aren't in control! 

We have much to be thankful for - we are so grateful that Rob arrived in Australia only a few days before they announced they were closing the borders!

So no matter what, we will count our blessings and remember that home really is wherever we are all together. 

Ezrael's Pregnancy and Birth Story

Ezraels Pregnancy and birth Story

I'll never forget when we found out we were pregnant with our second baby.
It was a MASSIVE shock and so much fear surrounded it.

I was still breastfeeding Hezekiah, and he was still just a little baby in our eyes - he was 13months when we found out. At that stage I was still recovering from our first pregnancy. I had only just started to resume any form of real exercise and was finally starting to feel stronger and like I was getting back to myself.

I did not feel emotionally ready for another baby - although I wanted more one day. Hezekiah's journey was a huge roller-coaster - as was the recovery.... I did not feel equipped or prepared when we first found out.
All I could hear in my head was the doctors saying - if you want to have more children - you must wait - probably at least 4 years...… and I could hear what my family would say.... their worry and concern.... if I'm honest there was a lot of fear... and very little excitement from me especially in those first few weeks.... and then the HG kicked in (hyperemesis gravidium) … I had forgotten how bad it was... but this time... I also had a toddler and a working husband..... from 4 weeks I was in bed all day... any time I tried to get up I would vomit large quantities and often end up on the floor...
it was a hard balance of trying to stay hydrated and keep anything down. The only benefit was that we'd been through it was before... so tried to get a head of the dehydration before it got as bad as the first time.
It was a really hard time... trying to care for myself and the growing baby.... and an active 13 month old... who had just had to stop breastfeeding almost overnight with no warning. My milk dried up almost instantly and Hezekiah could not understand at all what was happening - it broke my heart hearing him cry for me as Rob would try and soothe him in another room, while I'd be vomiting and so incredibly weak.
But the weeks went by somehow, around 7/8 weeks I started having some bleeding and cramping and was taken for another ultrasound - the sonographer knew us from our previous pregnancy and had seen what we'd gone through the first time. He said and wrote on the report - unlikely that this pregnancy will be viable. He sent us home with strict bedrest for the next 2 weeks and then told us to come back ( strange since I was already on bedrest completely with the HG) … we did as were instructed and shared the news with two friends in Australia, asking them to pray - pray for the baby, for me for peace and for our family and Dr's who we still hadn't told at that stage, pray that they would receive the news well.
After 2 weeks we went back for an ultrasound - and to the sonographers shock and delight  - the baby was doing well - he said - I didn't expect this but I shouldn't be surprised with the miracles we saw in your first pregnancy.
We went home happy, and trying to rejoice, in amongst the fear of what was to come and the chronic sickness.
We eventually shared with our family over video the ultrasound video.... I'll never forget my parents reaction - especially my mothers.... but, but Leah..... what about what the Dr's said.... our response was simply, " we guess God had other plans".
Telling my younger brother and his wife was really difficult. They were only a few months away from moving to Uganda - for what was suppose to be at least 12 months. They had given notice at work and started packing and preparing to come. They were very happy for us, and decided they would still come at least for a few months.

It was a difficult time, physically so weak from the HG, emotionally from feeling like the timing was terrible ( especially with wanting to stay and be with my bro and sister in law and nieces who were coming) and then with not knowing what this time was going to be like. With knowing what we'd been through the first time, we weren't sure if I would experience the swinging uterus again, and would I have to contend with the possibility of an incarcerated uterus again.
Wondering if we could we prevent it this time, because we knew now?

We eventually told our Doctors in Australia - who's recommendation was to try and get home before 18 weeks - 24 weeks ( where the biggest risk was for the incarcerated uterus) but they also knew I needed to be well enough to cope with the journey on my own.
Once again it looked like I'd have to go on my own - this time leaving Hezekiah to come with daddy, as I was not allowed, and was unable to carry him.
This was incredibly heartbreaking realizing I'd have to leave Rob and Hezekiah this time, and my brother and sister in law and nieces, who would have only been here a few weeks when it would be time for me to go.

At around 14 weeks - it became pretty clear that this journey may reflect the first one in many ways - I started to notice again that I would wake and have no tummy, then it would reappear. So once again I spent many hours hanging between two lounge chairs trying to prevent the incarcerated uterus from happening again. This became a normal part of the new routine again....

The one joy I had to focus on and keep me motivated was my little brother, and SIL and nieces arrival and thankfully when they arrived, I was 18 weeks, the HG while still there, but had subsided enough for me to be able to at least get out of bed and function with medications to help with the vomiting and nausea. We got to spend a few weeks showing them around and these are memories I really treasure. It was also a gift, because for Hezekiah he had the constant distraction of his two nieces to play and entertain him when mummy was gone.

But that day at the airport was one I will never forget - the screaming of Hezekiah as they walked away as I went through security - was a real breaking of the heart. He had no idea what was going on - or where mummy was going.

When I returned to Australia I was quickly put back in under the same team at John Hunter Hospital and thankfully I had almost the identical team as the first time, which made a huge difference with not having to explain things and having that understanding from them.
As with Hezekiah, I had the swinging uterus, so spent a lot of time on my hands and knees - or resting between two chairs to prevent the uterus from becoming incarcerated again. It became clear around 24 weeks again that the swinging was stressing the baby again, as there had been very minimal growth in between ultrasounds over a period of time. I was put on more medication to try and stabilize the excessive pain, which they hoped would calm the baby and help with the growth.
The further a long we went, the more excruciating the pain was becoming - the pain was bad the first time, but it doubled in the second pregnancy's because my body hadn't healed completely from the first pregnancy.
As with Hezekiah I had issues with my hormone levels ( a part of the condition I was born with) so was in and out of hospital and on ever increasing medications to try and stabilize my cortisol levels etc etc.
Numbers of times throughout the pregnancy the doctors stating what a miracle it was that this little baby had survived that first trimester with all the issues I had again, and with my uterus so traumatized from the first one.
Finally Rob and Hezekiah joined us in Australia, which brought so much joy and relieve, and help.
By the end of the pregnancy I was very heavily medicated, it was the only option to help stabilize the pain and to stabilize the hormones. They continued to monitor Ezrael's growth and found that while the medication was helping, it was highly likely he too would suffer withdrawals when born for the amount of medication I was on.

The day he was born ended up being much less straight forward then our first C-section.
After trying around 15 times to find a vein for the cannula they finally got one ( had that same issue first time too, and often too - I have my grandma's tissue veins)  , then it took multiple times to get the spinal block in the correct place. By the time the actual surgery even started I was already feeling very weak - but it was going to get a lot more difficult.
About 20 minutes into the surgery I said to Rob - they are taking a lot longer than last time, our beautiful surgeon ( who' also been there for Hezekiah's birth) said, "I'm so sorry Leah - there is just so much scar tissue from all your previous surgeries - we are having a difficult time getting through it all".

That's why the pressure was so much worse this time - the pulling and pushing sensations that you get were pretty intense this time.
Finally after about 35minutes - she said -" Finally" and then there was a little cry and we heard her say - "oh you are a lot smaller than your brother" ( I was thinking - smaller? really he was suppose to be bigger! Hezekiah was small enough)
Here he was and he was a he..... we had known he was going to be a boy - but I had questioned that a few times - but here he was.
They held him for a few minutes over the top of my abdomen and allowed for delayed cord clamping as I had asked. Then they whisked him off to check on him.
Rob went with him and I lay there waiting for them to insert the pain blocks they give me into my abdomen before stitching me up.

Struggling to get through all the scar tissue from multiple abdominal surgeries I've had over the years. 

Finally they got him out

They bought the TV screen close to I could see him being worked on, with Rob watching over him closely. At that stage we still didn't have a name.
Finally our midwife bought him over for me to have a look at and they to have a little skin on skin contact, after a few minutes I said, " I am feeling a bit strange, you may need to take him" they took him away and Rob followed them.

The surgeons were still busy at work, and the anesthetist was busy chatting with them and monitoring the machines and the midwives were busy working on Ezrael and Rob was with them.
I started to feel even more strange - (I've had a lot of surgeries and its not unusual for me to have some weird feelings or side affects from all the medications)

As time went I started to realize, it was not just pressure I was feeling now - it was pain, the pain of a needle or something pushing through me, and then pulling, the pain increased, I tried to get the attention of those around me, but I was struggling to talk, both my arms at this stage were strapped down as I had medications going in both arms, I couldn't wave for anyone. I kept calling - but not much sound was coming out and there was a lot of noise going on in the room, the pain was increasing, I could feel them stitching up my insides... the pain was excruciating, I started to feel like I was going to blackout, this went on for what they suspect was about 10 -15 minutes. My body started to shake and my beautiful midwife happened to glance over and saw and she left Ezrael with the rest of the team and she leaned down and said "whats going on Leah, how are you feeling?" and amidst the shaking I said, " I can feel everything..... I'm going to blackout". ….. she got the attention of the anesthetist who was nearby - he came over, and read the other machines, looked at me and gasped, " oh my goodness she's feeling them, and he instructed the Dr's to stop...… they injected more medicines and eventually the machines and everything levelled and they began again …. it took quite some time, I kept feeling like I was going into shock, poor Rob stood by concerned and wanting to help, but didn't want to get in the way.
He tried talking to me and tried to distract me from the excruciating pain I was still feeling - waiting for the medication to kick back in.... after some time the pain subsided -  now it was just back to the pressure feeling, the Dr came over and apologized profusely, " I'm so so sorry Leah, since the c-section has gone a lot longer, the anesthetic had started wearing off, we just didn't expect the amount of scar tissue that they found today - I'm so so sorry you were suffering there", he wiped my tears and I could see how sorry he was.

Feeling very alone as the pain kicked in and anaesthestic wore off

Finally got their attention and able to share what I was feeling

After being wheeled to recovery I was incredibly weak and they placed me on oxygen as I just wasn't doing well - I slept in and out while my midwife tried to express my milk for them to give to Ezrael - he was stable at this stage so was in recovery with us.

The anesthetist came and checked on me in recovery and apologized again, he said he'd never had that happen before and he was so sorry. For me and Rob despite how horrible it was - the whole C-section had gone very differently to how they had thought and planned, so it was no one's fault it was just what it was. 

Later after recovery they took me down to our private room on the ward, the plan was the same as with Hezekiah that Rob would stay the whole time to help care for me.
Once we got down to the ward, our specialist and midwife started to explain the care management for me to the nurses on the ward - they all looked at each other, it was clear that it was going to be too much here.
Our specialist and midwife did some ringing and before too long we were being taken back upstairs - I slept and when I woke I was in a large room - I had no idea where we were - the midwife said, they had decided to set up a critical care room for me upstairs at the back of the delivery suite unit - near NICU, as Ezrael was going down hill and they believed he would be going there soon.

I had my own nurse and midwife for the next 3 days - who's sole job was to care for me and all the machines I was attached to.
Not long after they bought my mum and dad in and Hezekiah to meet Ezrael - it was a special moment seeing the boys together for a few moments.
Mum and dad had some time to say hello to Ezrael and then he was taken to NICU where he would spend the next 2 weeks.

Inside our high-care maternity room - we had such an amazing team caring for us

I didn't see Ezrael again till the next day - Rob and my nurse would help to express my milk while I was very heavily medicated, and they would take turns taking it to the NICU.

The next day, they wheeled me through the back corridors between the delivery suit and NICU and I saw ezrael - he wasn't doing great at that stage - they wheeled my bed as close to him as possible, I wasn't able to sit up very much so it was difficult, but I had a few moments with him. They hooked up my oxygen to his oxygen machine, and the nurses smiled and said " you guys are sharing oxygen together still, even after birth :)

Sharing oxygen together on my visits to NICU

Over the next few days the nurses would go to the huge effort of wheeling my whole bed from one ward to the next often through the middle of the night, whenever I got upset that I wanted to see him, they'd unhook all the machines and go to all the effort to try and give me those few moments with him a few times a day.

Ezrael was suffering hypothermia, and was really struggling with breathing - so was on oxygen for a number of days and also placed on CPAP. He struggled to keep down his feeds and was weak for a long time. We heard a number of times the Dr's saying, he is acting more like a 34 weeker than a 36weeker - at the time I didn't think anything of it - more on that later.

Finally getting a real hold after 5 days

After about 2 days - after a lot of praying on our part (mostly Rob as I was pretty heavily medicated) we came up with the name Ezrael. Ezrael meaning God is my strength/empowered by God
Amani (Swahili - meaning loyal, faithful and peaceful) Colin - meaning Victorious - after my dad.

Both our boys names meant something to do with strength from God - because we knew we would not have them in our arms today - if God hadn't strengthened and empowered them. We also chose middle names with the characteristics we prayed that that little one would have.


After 3 days in high care maternity, Rob and I were taken back down to the ward - I still wasn't walking but no longer on as many machines so was able to have a nurse who cared for other patients also.

We spent the next 2 weeks there. Rob would go back and forth between me and NICU, helping to care for Ezrael, helping me express, helping with my physio etc etc.


They are weeks of great physical pain for me, but also feeling greatly blessed to have such a wonderful husband, and feeling blessed at the gift of being a mum.
Most days I only see Ezrael once when they wheel me up to NICU, Rob takes photos and videos for me to stay connected to him.

As Ezrael gets stronger they bring him down for little visits, and eventually he got to a stage where he was able to sleep with us, while still being monitored by the NICU team.

Ezrael suffered medication withdrawals ( as did Hezekiah), so they are monitored closely for all the signs of opioid withdrawal. Its not a nice thing to see your baby shaking, having tremors, in pain and struggling to feed from the medications you've had to take - but I am so thankful for the amazing team who journeyed through the whole process with us.

First night sleeping in with us at hospital - Rob on pull out bed next to his little boy

All tubes finally gone

After our few weeks stay in hospital - we were finally released home. And then the recovery begins.
5 weeks in a wheelchair, months on a crutch as my body was really struggling to recover this time.

home with our boys - the journey to recovery begins

First sunday at church - 6 weeks old

The original plan was that we would all try and return to Uganda together before Rob's 6 month visa ran out. It became pretty clear when ezrael was about 3 months old that that wasn't going to be possible - I was still struggling with recovery and on a lot of medication, and Ezrael was still very little and struggling with feeding, so we hadn't even begun the process of weaning off the medications.
When ezrael was 12 weeks old - Rob flew back to Uganda..... it was going to be an incredibly difficult 6 months apart.

When we finally did start the withdrawal process, it became clear quickly, that Ezrael was struggling with the rate we were coming down off the medications. He was constantly having tremors, diarrhea, crying in distress (a unique cry that is hard to describe unless you've been around a baby having withdrawals), and unable to sleep ( he would wake 7 times within an hour) ….
So they had to slow it down even more.
It was an exhausting process - for us both.
But with God's miracles - we got there ( another post )

Hezekiah was a wonderful big brother and support to mummy - who was also experiencing the same withdrawal symptoms as Ezrael. I am so thankful as I look back for all those around us who supported us during that time.
It is incredibly difficult for people to understand chronic pain, or any of my conditions, and then to try and understand what opioid medication withdrawals are like, when they've never been through it, but I am grateful that people supported us and surrounded us, and stepped in to help and showed great compassion, even when it was hard for them to understand.

7 weeks old

Finally after 6 months apart - I returned to Uganda, with our two beautiful miracles.

It was only when I was back in Uganda - that we would realized why Ezrael was more like a 34 weeker - when I had originally returned to Australia I had accidently left my original scans.
At my first antenatal appointment in Australia - they asked me what the due date was - I was already pretty heavily medicated - and jetlagged, and had pregnancy brain, I said.... umm... and I said its either, this date or that date.... she said ok - and wrote one and said get rob to check.
I completely forgot about it, and because, although Ezrael was small on the scans, he was measuring bigger than Hezekiah did the whole way, so no one questioned.
So with the actual dates - Ezrael was born at 33 weeks and 4 days which explains the extra issues he had, compared to Hezekiah.

When I think back to Ezrael birth, it was certainly more traumatic than Hezekiah's actual birth, the excruciating pain of being without the anesthetic and the weakness I felt for months after - it was a long recovery.


While so much was similar to Hezekiah's pregnancy and birth, each had their own challenges and complications and both held so many miracles.

When our team ask how the miracle boys are - I am always reminded of just how blessed we are to have our two little boys.

And what a beautiful addition Ezrael has been to our family.