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
