The last few days have been a real struggle and I think I’ve felt every emotion possible. As hard as it seems, I must remember to keep focused and not get down hearted. But even when things don't go the way I want them to, they still go God's way. And His way is the best way. There needs to be less of me and more of Him...
So I think my last update shared the amazing news from the CT scan last week, that Henry's lesions are starting to disappear and this medicine seems to be working! Finally we had something certain to hold on to and all we could do was give continued thanks and praise to God. It was left that our team of doctors would speak with Bristol on Monday to feedback to them and see if we could get the medication changed to oral so we can give it to Henry at home. Well, we heard back from that discussion...
As the conference call was at 12:30 on Monday, I had expected to get a call from the doctor on Monday afternoon while we were at home. Unfortunately this didn't happen, but rather than get uptight, I just took this time to keep praying and trusting. I assumed I would either hear that night when we went back to hospital or on Tuesday morning. Thankfully Henry slept well on Monday night and we had more energy to face what we heard.
The doctor who gave us the good news on Friday came in to see us on Tuesday morning just as his medication was nearly finished. She shared a lot of the discussion, saying how pleased Bristol were with Henry's progress and what the scan was showing. However, they don't want to change the medication as they believed that as this is working, why would we? Talk about knocking the wind out of my sails. It felt like a huge punch to the heart. I started to feel the old ways in which I would react bubble up. I felt like I was going to scream, snap, yell, shout in anger. But I held those emotions back, for the time being anyway. Instead I shared my perspective as Henry's Mum, and my concerns for his development. Since being in hospital he hasn't been getting enough sleep, and he needs this to thrive. Over the last few days inparticular I've noticed a change in him. He's a lot more restless. He's more aware of his lines as he keeps pulling at them. He's grumpy cause he hasn't slept enough (who wouldn't be?) and he just doesn't seem like himself when he is there. As he can't speak up, I have to for him. But I then need to remember these people are experts in what they do, and I need to respect that. It doesn't make it easy though. She then shared that a speech and language therapist will come by to check on Henry, another thing that grew more concern in my mind. I had thought Henry was doing really well with his speaking... there's new words every day. But I think I just started to jump to conclusions, and the wrong type of conclusions. I took my eyes off God and began to panic.
The doctor shared that Henry would need to stay on the IV for at least 2 more weeks, and that his CT scan would happen again on 24th June. She apologised for having to bring me all that news and then left the room. There was only about 20 minutes left on Henry's flush, but that was the slowest 20 minutes ever. I tried to hold it together and keep playing with Henry, not wanting him to see me upset. The doctors were also standing outside the room talking still, and they could see us through the window. I didn't want them seeing how I was falling apart on the inside. There was a war going on in my mind. One side was shouting 'where is your God in this?' and the other was shouting 'It's God's will, His way, His time. Just trust!'... but I felt like my heart was breaking. I had to continually blink the tears out of my eyes and remember to be strong for my precious little son.
A short time later David came and collected us from the hospital. As soon as the car door shut I could detach from the hospital and all the medical team around us and just release. I could shout, scream, cry, question, shout some more... but I had absolutely no energy. All I can do was cry. That's the only way I could physically let the emotion out the entire journey home. I shared what was said with David obviously, and as much as I didn't want him seeing me break so much, I'm glad he was there. He gets me. He knows how to handle me when I'm like that. He didn't talk. Even though I'm sure he wanted to. He knew I needed that space to switch off from the morning and process my thoughts. He helped me refocus, let go of it all and let me shout when I needed to.
I'll be very honest, I didn't focus on the truths of God's word. Instead I shouted at Him, I questioned him... saying things like 'Where are you God?'... 'Why is this happening?'... 'Why must we go through more of this?'...'Why can't we all just be together, knowing the storm that's ahead of us?'...'Why me? Why us? Why Henry?'...'WHY?'...
I was so hurt. I was so angry. I was so tired.
It felt like all the darkness was hitting me with never ending waves, trying to drown me and consume me. I then felt numb. That I couldn't do this anymore. That I wasn't capable. I couldn't breathe with the weight of it all. It just feel like more and more was being piled on and at no point would it ease. I was angry that I felt this way.
But thankfully, God knows how to handle me more. He knows how I work. He made me. He knew I needed to release all this pain and anger. He knew I had to shout. But He could handle it all. I often question why He doesn't respond back to me in those moments. But He doesn't respond in the way that I want or expect. He responds with grace. He responds with quiet. He responds with stillness and calm. He responds in a way that allows me to catch my breath. He reminds me of the importance of being still. Focusing on my breath. Letting go. And even though there was a few cycles of this emotion on the way home, each time the pain and anger built up, it didn't stay for as long. But this process needed to happen so all of it was out of my body. I needed to get rid of it all so God could fill me with peace and comfort, so my mind could be clear and ready to remember all His truths and promises.
When I arrived home I phoned my doctors secretary to see if she could call me back. Just so I could get more clarity on things to be honest. But again, this was me trying to control the situation. Thankfully she didn't call back straight away as I was still letting go of the hurt from the morning. I think I was looking for someone or something to shout at. But I think the person I needed to shout at was myself. I was angry at myself for still feeling like I needed to control things. I know I've came a long way and I truly trust God, but I still believe there's more work to do, and I believe that's why things are happening this way, God's way.
Once the pain and anger diffused, it was replaced with doubt and confusion. I was trying to understand a situation that wasn't mine to control. I wrestled with it all back and forth all afternoon until I got exhausted. The exhaustion eventually took over and I was able to get a nap while Henry was sleeping. I always believe everything is better after a sleep. However when I woke up I grabbed my phone and felt disappointment as the doctor hadn't called me back yet. But again, looking back now I'm glad she didn't.
Before I knew it dinner time arrived and it was time to sort everything to drive back to the Royal. On the way up in the car, the doctor finally phoned me. And this was the perfect time. This was the time God knew it was best to have this conversation. I had let go and I said to David in the car 'God wants it to be this way'... I didn't feel a need to question God or be angry at Him. I was more calm after processing and dealing with my thoughts and emotions all afternoon, however the hurt was still there, deep deep down, but not overtaking my thoughts in the same way. That hurt has been present but not on the surface since Henry's diagnosis, but God has been helping me through it as it's not for me to carry on my own.
Thankfully the doctor gave a bit more clarity to what was going on. I adore her. She has such a lovely heart and not only gets the medical side of things, but she understands how we are feeling while going through what we are going through. She knows how exhausted we are. She knows my concerns about Henry. She knows we all want to be at home. I didn't need to say all this to her. I didn't need to shout it all at her and fight and argue that I know best. Cause I really don't. Only God knows what is best for us. If the doctor phoned earlier in the day, I maybe would have shouted all those things at her. But she is not to blame. She is caring for my son and I'm so thankful for her and the team. It's just typical of us to try to find someone to blame when things go bad or get difficult.
She shared that they want to do a test to check how Henry is swallowing. There is a small chance that Henry could be swallowing fluids or food the wrong way, perhaps causing infections. However there is no real concern about this, I've never really noticed any issues with it, but I respect that the medical teams want to be completely sure. If this was what was happening and they didn't identify or act on it, if Henry went to Bristol and this happened, it would be too difficult to treat. Our doctor doesn't seem to think it's an issue though, but it's just one of those things worth checking. I'm not too sure when this test will be exactly, I'm assuming soon. When we find out the results of this, she will speak with Bristol again about the medication and we will take it from there. They will continue pushing for us to get the medication at home as they understand my concerns and they too want Henry to thrive as much as possible before the transplant arrives. At this stage we don't really know when that will be either. For now, all we know is he is on this medication for 2 more weeks at the hospital, then another CT scan. We will then know what the next steps are after that.
After this phone call I felt so much more calm. I knew a bit more about what was happening. I let go of control and handed it all over to God. I do get frustrated that I keep having to do that, but I think it works that way? He keeps giving us lessons and opportunities to exercise these things and they soon become habits. I think my impatience with myself not letting go and trusting God fast enough frustrates me, and a lot of the anger I feel is caused by that. Not entirely by the circumstances we face. I just want to get better at trusting.
Henry done really well again last night. Every night once he goes to sleep there is an opportunity for me to be still, and to feed my mind with God's truth. Every time I do this, the right verses come to me. Sometimes video sermons come up on my social media that I need to hear. As much as they help, I often feel a bit of tension which reminds me to just turn to the Bible. I need God's word from the source. Not from other people. Don't get me wrong, I'm not putting these people down. I'm so thankful to people who share these messages online. They have helped me so much. What I'm saying is I guess I need to listen only to God at the moment. Social media these days is quite poisonous. It's filled with so much negativity. As selfish as it sounds, I don't need to read about disunity and hate. It can distract me from the stillness and truths I need to surround myself with. I have been trying to stay away from things that are not healthy for my mind lately, and I am sorry if I've been slower replying to messages. I'll continue to try and get back to you guys when I can. I just want to focus on God more and have more moments in solitude. It's in these moments that my ways, my thoughts and my feelings are replaced with God's will and way. Calm, peace and joy take over and I can see things so much clearer. I begin to understand more and let go. My trust in God builds and that's where I want to be. I want there to be less of me and more of God in all of this. For it's when I give it all to God, that things come together. The purpose becomes clearer and there is joy in knowing we are living in the purpose and calling for our lives.
I'll let you know any further updates when different tests happen. For now if you could continue to pray boldly for the next few weeks. Pray that we all get the rest we need, Henry stays well and stable, his tests come back clear and progress is being made, and ultimately for Henry's healing. God is working all the time, even when we don't feel it or see it right away. Pray that we stay intune with God's heart and will, and that nothing steals our joy and peace away from that. Pray that we take those moments to be still and mediate on God's word. Cause it's the only way we will truly get through this. With God. I'll share some of the truths I've been meditating on below, perhaps they may help some other folk! Be blessed. Love you all.
"For I know the plans I have for you," declares the Lord "plans to prosper you and not to harm you, plans to give you hope and a future."
"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
"And we know that in all things God works for the good of those who love him, who have been called according to His purpose."
"Do not let your hearts be troubled and do not be afraid'"