I keep saying I'm going to make a list of the things that have happened to us - and I will. This will be a couple's project, with Dave, because I am sure I have already forgotten things. But I have to believe we are going through this to encourage and educate others - whether their child or someone they love is going through this, or just to be a light in general.
In the meantime, on the way to the hospital Friday night, I started thinking of what we have learned so far. We had to go to the ER for tests because Sophia's white blood counts were so slow on Tuesday, they couldn't just give her an antibiotic. Best case was just get a dose and come home - worst case a couple days stay. I'm so thankful today that God answered all the prayers that were sent up - the best case happened. He also continues to answer my prayers for perspective and calm the storm in my heart, even when it feels like my world is on fire, again.
In the car, I came up with 3 things we have learned just far. I don't know if they are "rules" exactly, but they seem good to live by in this season of affliction and trial.
1. Be ready for anything...anytime...anywhere.
Anything could change about Sophia's condition, at any time. Literally, we could go from happy kid to miserable in a second. Especially when her counts are low. Our job (which I need to do better) is to be mentally, spiritually and physically alert. I don't think we can be prepared for everything, but we have enough information to know that, especially on weeks following her in-patient chemo, we should be ready to address some issue.
And if that week passes without incident - what a blessing! But chances are, if you give a 4 year old chemo....
(sung to the tune of "if you give a mouse a cookie.")
2. You are the decision-maker, not the doctors.
Another hard lesson learned. Whether it was in the beginning when she was misdiagnosed; treating the side effects; or simply who we let access her port - our guts (combined with the information from our team) have enabled us to make the right decisions at the time.
We trust in our love for Sophia. We know we are going to do the very best thing to help her - in the short and long term. We know The Lord is sovereign and, when we seek His wisdom - it will be given to us. And we can always keep asking questions if we need to, but generally, if Dave and I are in agreement - it's the right call.
We've met some excellent doctors, but we've also met some who think they don't need our input. In the end though, her care and healing is in God's Hands and I know He is using us as the vessel to see her through this.
3. Focus on our family - no matter what.
There have many times in the last 7 weeks that I have let opportunities slip past me. I've put my agenda ahead of taking a moment to pour my attention into Dave, or be with Natalie or give Sophia comfort beyond just caring for her health.
I'm learning that there will be, in the end, nothing more important than those moments I chose to turn to them. No phone call, chore or blog post will mean as much in the eternal view. This rule is the hardest to follow because I've been in survival mode and all I've wanted to do is just get through the next minute, hour, or day. And it is not always possible because, say, the new fridge has to get fixed - but there are more chances I could take.
The first 45 days is over and I know from my work experience, that time period was the hardest to ramp up. I still don't know what I don't know, but I can expect that things will come up. We are starting to be able to think ahead - not make plans so much - but we have lived with it long enough to get a glimpse of the new normal.
I think Romans 12:11-13 from The Message sums it up well:
Don't burn out; keep yourselves fueled and aflame. Be alert servants of the Master, cheerfully expectant. Don't quit in hard times; pray all the harder. Help needy Christians; be inventive in hospitality.
Pray I'll put these "rules" into action and keep going. Even on the bad days, I can always just do #3 and if I get nothing else done than that - it will end up a good day!