A quick thank you to all who have borne with us during our weeks long silence. To be honest, it has felt as if there is not much to report; however, I am starting to realize that is not true. JC has had challenges her entire life, and there have always been points where I have felt as if we are fighting against an immovable mountain with no progress. I literally read a quote tonight that said something to the effect of each day might seem like nothing new, but when you look back, you see the change. That saying has proven true time and time again in JC’s life. Although progress is slow and sometimes we slide back down the mountain in the end, we are further from where we started.

Medically speaking, we had not seen a lot of change in JC’s condition since our last update, but time can be a revealer of many things. This week, we got some amazing news; JC’s iron number finally went under 1000! We have literally been waiting for this moment for over 6 months, so it is such an answer to prayer! We still have to wait 6-12 months to do a repeat MRI, but this week and this number was so very encouraging.

Thankfully, she has started to require less transfusions overall. She has gone a full 5 weeks which is a huge step from last year at this time when she was having bi-weekly transfusions. Unfortunately, she still has an unreasonably low immune system which means she is very susceptible to any illness. Each illness really sets her back as it means stopping her chelation therapy and more transfusions. We are so grateful that she has remained free of colds, viruses, etc since February.

We continue to seek God for guidance, wisdom, and healing. I am often reminded that He is faithful, and He is our provider. I know without a shadow of a doubt that He is the giver of life, so we can trust Him to guide us through this life He has given us. Even with her port, JC has a pretty big fear of going to her appointments; everyone is always so kind, but getting poked is never fun. We continue to ask for prayers for JC for peace, healthy blood counts, and comfort.

There are days I struggle seeing the good or the purpose because we have been met with some really rough days. However, even our toughest days are not technically the worst they could be. The title really relates to this feeling that can be overwhelming when quite literally a big chunk of your life is dramatically changed. The truth is that even the roughest days are still your life. C.S. Lewis said it so exquisitely “The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one’s ‘own,’ or ‘real’ life. The truth is of course that what one calls the interruptions are precisely one’s real life — the life God is sending one day by day.”

God has put us here in this space and time and place, and He has plans for us. He has given us His Spirit to guide us, and Jesus has given us instructions. Two things Jesus said keep repeating in my mind lately. The first is that the greatest commandment is to love God with all your heart, soul, and mind and to love your neighbor as yourself. The second is what Jesus said to Peter. He asked Peter if Peter loved him, and when Peter said yes, Jesus replied “then feed my sheep.” It is humbling to see how very much I fall short of the instructions Jesus left us. Yet, I am reminded of His grace and mercy which gives me a chance day after day to love God and love people.

Thank you to each of you who have been faithful in prayer and sending cards. We are so very grateful for each prayer and each card. We continue to feel so loved and uplifted through this journey.