Time for Bristol

It's time! Bristol is happening on Sunday and we are now packing our bags, again! But this time it's actually going to happen...



Since Tuesday and finding out that Bristol is happening, Henry has continued his medication, voriconazole, and after seeing the dermatologist about his skin, we have been applying the new cream which is working a treat! I had left a message with my doctor on Tuesday to call me back as I wasn't sure if Henry was to get his treatment up until we go. I was prepared to plead for a couple of nights at home before we travelled, but I didn't have to! Thankfully Bristol had recommended to stop the voriconazole infusion on Thursday night, and then give Henry ambisone again on Friday and Saturday mornings which would be a shorter infusion and only once a day. Meeeaaaning... we could all be together and sleep at home Friday and Saturday night!! To say I am thankful is an understatement! So so thankful! We were also told that all three of us would need a COVID test before travelling, which made me a bit nervous, but when comparing it to what Henry has had to go through so far, I should quit whining and be brave lol.


So last night on the ward felt so weird. It had strangely become the norm for us for the last 7 weeks. An environment we had grown used to, and the most incredible medical team who are now like family to us. So many of the team came by to see Henry and wish us all the best for the next stage of our journey. I held the tears in but I was so overwhelmed by the love people, who were strangers to us a short time ago, are showing towards my little son! I prayed at the very start of all this that Henry and his story would impact lives. And it's happened already. I pray that people see God's love and light through all of this, and a work has been started in them! Henry done so well again and slept through the night, he even slept in this morning, but this meant we weren't awake to say goodbye to the night team! But one of the most lovely nurses I've met, Nicole, left us a sweet message on the whiteboard. I will totally miss her! All the great chats and giggles! Henry adores you! And all of you. You all made him settle so well, and the smiles! Then the high fives and blowing kisses! I am so so thankful for how you helped get him used to the hospital environment, the various tests and obs and just how you loved him so well. We will be getting used to a new medical team in Bristol, but I am looking forward to getting back to see you all, and maybe even throw a massive party on the ward! Lol!



We went for the Covid tests today which was an experience to say the least! Driving to the MOT centre and watching the gate open to reveal nurses in full PPE gear, so bizarre! I was already pretty nervous as I wasn't sure what to expect, but it was over quite quickly and the discomfort didn't last long! We should get our results tomorrow, but I am keeping hopeful that we are all negative as this would be the only thing stopping us from going to Bristol at this stage! Prayers appreciated!


After all that we were able to get home and sort out some packing! Still a lot to do tomorrow, but I think it's important for us to have a bit of time together before the storm starts on Sunday! We will do the rest tomorrow and say 'see you later' at a distance to some family members. I'm pretty sure it'll be emotional, but me and David are feeling ready for this. We thought we were ready last time, but these 7 weeks God has been teaching us so much more and preparing us further. This extra time was not only needed to ensure Henry's health was good and he was stronger for the transplant, but it was also needed for us to learn to trust further and deepen our relationship with God. I am also sure God had other reasons, and we both feel that this is God's timing, and it's perfect. We know that God has been ahead of us this entire time and prepared everything.


For the last 8 months I have been praying and asking God to heal my son before Bristol. That has obviously not happened. I was so confused and hurt by this at the start, but as time has passed, I have understood that it's not about how I want things to happen and when suits me. But it is all God's will. We won't understand most things in this life, no matter how hard we try. Of course it breaks me that I will be beside my little son while he goes through this tough painful treatment, but as well as being thankful that this treatment exists, God's hand is in it all and will be holding all of us throughout. I'm always reminded of the words 'even when I can't see it or feel it, you're working'... and 'walk by faith, not by sight'. God has been training me even more lately. Even in those dark moments when I feel hurt, confused, abandoned, God won't leave me. I will fall apart, but I will fall apart in to His hands. There is an army from Heaven fighting for us. I will be still and focus on who God is, along with all His promises and truths. God has trained my eyes to see passed what's in front of me and instead seek Him. He has trained my mind to focus on the truth of His word and not the raging waves of doubt and fear that constantly attempt to drown my thoughts. He has trained my heart to break, but in to His hands so He can rebuild it and hold it together. He has trained my soul to be still and cling on to the joys of what is ahead. The plans He has for Henry's life and the lives that will be saved through all of this. There is so much opportunity in this season. No matter how tough it is, good will be brought out of every moment. Yes, I will wrestle, but I will also embrace it all. When I feel I have nothing left, God steps in and gives me all that I need. He is my comforter, defender, refuge and strength. Always.


In these last 7 weeks I've also realised how much time and energy it takes to type these blogs. I want to share this journey with you all as I know it will touch and save lives. But I also believe that God wants me to be at my best for my husband and son, and not to put myself under any additional pressure, no matter how much I want to share God's work. Initially, I wanted to blog most days, but I am now thinking that won't be realistic and it would exhaust me too much. I was given a prophetic word to journal throughout all of this, however, I feel God is telling me to journal for myself first. To help me release and process my thoughts and emotions so I can keep my focus and eyes on Him. So, I don't think I will be blogging that much. Perhaps this chapter of Conquer will be shared after Henry is healed when I have time and energy again to type it up properly. I will be sharing updates most days but only through social media (Facebook and Instagram) which will be primarily to let you all know how we are and what we need prayers for. I still want to remain connected to you all and keep you informed, as you are all like family to us and have shown us unbelievable amounts of love and support. You are our prayer warriors and we are forever thankful. I'll try to do some blog posts now and again, but if you want to keep updated regularly, the best way would be to follow me on social media at the links below and I'll also have access to emails too!


https://www.facebook.com/conquercreative

https://www.instagram.com/conquercreative

julie@juleco.co.uk


So that's pretty much it. I am pretty exhausted now and will spend some time with David now, as Henry has settled to sleep so well (YAY!)... then get a night sleep in my own bed (so much joy!). Thank you for all the messages, gifts, prayers, love, support... it leaves me speechless and in awe. You are so loved by me and my family and I truly can't wait to see you all on the other side of this. Please keep praying bold prayers throughout that Henry will cope well with the treatment, pain is kept to a minimum, and he is healed! Pray for strength for all of us, and that we keep our eyes on God. Pray that we don't feel overwhelmed by all the medical information or pressured to understand, that we will remember our task is to be Henry's parents, nothing more, and that we are partnered with God in this. Pray that lives will continue being touched and lives will be saved! Pray for the medical teams, the other families on the ward and in Clic House that they will feel comfort and remain healthy.


I'll leave you with these awesome words from Craig Groeschel that I read lately...


When I don’t see a way, I know with God there's always a way.

When I don't see what I want to see, because of the faithfulness of God, I will choose to walk by faith.

When I don't understand, I will believe with everything in me, My God is still good.

I will worship Him before I see Him move.

I will praise Him before I see Him act.

Even in the waiting, I believe that He is good.