I've felt on my heart lately that I should share how I've been feeling as a Mum going through all this, in the hope it would be an encouragement to someone out there, and to glorify God in it all. It's not a post to get my ego stroked. I don't intend myself to be seen or for me to get praise, but only God. It's always been his strength alone that has carried me through everything. I just want to be real by sharing and acknowledging my feelings lately.
Being a Mum is the best job, and being a parent is seriously the best experience ever. It has taught me so much so quickly about me, life and God, but it also comes with waves of exhaustion, doubt and fear. And these waves have been getting way bigger for me recently.
The nurses have been coming out to the house during the week to do Henry's meds, and thankfully he's down to only one antibiotic now meaning it doesn't take as long. Although no matter how long they take, Henry has done so well just sitting and playing with his toys until the nurses are finished. He is getting so used to all the nurses now, he smiles at them. He just amazes me beyond words. I am truly blessed to be his Mum. But when I get filled up with joy and amazement at how my little boy is managing through everything so far, the waves of doubt swoop in.
These doubts circle my mind and shout things at me like "yes but are you actually doing a good enough job Julie?"... "do you really think you're a good Mum?"... "I don't think you'll be able to handle what's ahead"... and these have been getting louder in my head as Bristol gets closer.
Being honest, when I sit alone with my feelings, I am terrified of what's ahead. I do worry about how I'll help Henry through this, how I will hold him and comfort him through the pain and confusion he will be experiencing. I'm scared that he will see me upset, and wonder why I'm crying, then hoping I can hold myself together and keep strong for him, even if that means falling apart when I go back to the Clic Sargent house to sleep. I'm terrified of not knowing what to do. I don't know how I'll handle all the emotions or information from the medical team. I don't know how I am going to hold it all, and then I get angry that this is all even happening. I know there will be really low moments and dark nights, that's the nature of what we will be going through.
But then I sit alone with God and share these feelings with Him. All my fears, my worries, my weakness... and He takes them all off of me. He lifts the heavy weight of them and calls me to draw close to Him and trust. He reminds me I am not alone in this, that He will be with me every step of the way. He will never leave me, on the mountain or in the valley. He reminds me of Henry's smile, all the joy and strength my little boy has within him that he shares with everyone he meets. He reminds me of my amazing husband David who is an incredible father to Henry. He reminds me of the army of people praying and standing with us through this storm. He reminds me that He is with us. The battle is His. Be still. He is in control of every single detail and has a purpose for all of it. Henry will be healed and come out of this with such an amazing story that will touch and save many lives. It's when I focus on all of these truths that God gives me so much strength. All the doubts are silenced.
I am guilty of rushing ahead in my thoughts, and I think it's a very easy thing for us all to do. I try to make sense of everything. I want to understand it all and have all the answers. But I won't, can't and don't have to know it all. It was never the intention of God for me to carry all this. I am tasked to be Henry's Mum in this season. That's all. Not a Mum and one of the medical team at the same time, trying to understand everything that is happening throughout the treatment. I'm not even expected to be SuperMum (although the title is appealing!)... and I am certainly not God. I just need to be a Mum, in all the ways I know how to be. I just need to be me, with all the flaws and raw emotion. I will acknowledge my struggles, my weaknesses, my fears... but I will always turn to an amazing God who holds me above it all and strengthens me so that I am capable of walking through this storm with Him, my husband and my amazing son. God has got this.
Henry has been coping really well with the daily meds he is still on. So thankful that the nurses come out to the house to do these during the week, especially with the risks out there!
We had to go up to the hospital today for more blood tests to check the potassium levels in his blood as the medication he is on may effect this. They were checked recently though and were fine, so I think it's just a precaution. Henry also had to get another ECCO done today. He had one of these back in November. It's just part of the pre-transplant assessment to check around his heart. I assumed there would have been a melt down while he was getting this done today, but David went in with him and he was so chilled! I think he is getting used to all the doctors and nurses now and just lets them get on with whatever they need to. He really is an amazing boy! Maybe he just likes proving me wrong lol!
We have to get all the pre-assessment tests done again as they need done within 30 days of transplant and Henry's got delayed due to the possible infection that showed up. However the doctor mentioned today that so far it's not looking like there is a bacterial or fungal infection. Praise God! I think they are still running more tests on the sample from the bronchoscopy but so far it's looking good, and that the lesions in his chest are due to the JMML condition he has. Please keep praying that anything they need to identify is found and can be treated, or that nothing is found and Henry is as strong and healthy as he can be before the transplant happens.
He will need to go back in a week or so for more blood tests to check for viruses, and also another CT scan in theatre. After our last experience with theatre I'm a bit nervous about him going under anaesthetic again, so please pray he handles it well.
I will keep you all posted if there are any further developments, either through a blog post or video updates (starting to get a bit more comfortable with these now!). We are still able to enjoy our time at home, and Henry is thriving so much which brings us all so much joy. We hope everyone out there is staying safe and healthy!!
Bold one... Henry is healed!
Henry continues to cope well with the meds for the possible infection.
The pre-assessment tests all go well and Henry gets through them fine.
Travel and accommodation plans are arranged without issue.
Me and David keep being the best we can be for Henry and not beat ourselves up if we feel we are not doing a good enough job, and remember God's truths!
We remember to find joy and comfort in the little day to day things.
That we continue to let go of all fear, worries and anxiety, and surrender it all to God and trust in Him.
The medical team in Bristol and the families on the ward remain healthy and safe.
That lives will be saved through this journey.