It’s been a long time since I’ve written anything on here! It’s not that I haven’t been inspired to write, I think I just haven’t prioritized it. And that’s okay. I love when I get inspired and end up writing for hours. I don’t know how writers can keep up with a certain amount of posts per week, because that is just not how I function. Although I’m just posting about my thoughts and my life, obviously if I had certain topics to stick to it could be easier. Anyway, I’m rambling already. I’m writing this post tonight because tomorrow my baby girl turns ONE.
Before I sat down to write this I read the post where I talked about Zoe’s birth and her diagnosis of cystic fibrosis (it’s called “12 days of beautiful chaos” if you want to scroll down to get caught up). I couldn’t make it through the whole thing without tears streaming down my face, and maybe not for the reasons you think. It feels like just yesterday but also like a lifetime ago. I thought I would read it and think, “wow, look how far we’ve come!” But I’m not. I mean of course we’ve come a long way, anyone around us know our lives have changed drastically this past year. But if I’m being honest, I reread that blog post with tears in my eyes and ended up thinking, “wow, it sounds like we were in a pretty good place emotionally at that time.” The post was definitely tinged with grief but had an overall tone of hope.
It really got me thinking. I’m pretty open and honest on here, so I know that those words and what I was feeling was true. I honestly think I processed the idea of having a child with a genetic disorder when we were pregnant, rather than after she was actually diagnosed. It didn’t take us long to accept the diagnosis and move forward. We definitely had peace about it, peace that we know had to come right from Jesus because there wasn’t nothing peaceful about that time in our lives. There were small, quick moments of doubt and wonder, but we didn’t dwell on it.
I’m not saying this in a “our faith must be so strong” way at all. It’s actually surprising to me. It’s no secret that I suffer from anxiety and that even with minor things I struggle with fear, doubt, worry. So with a major change like this, it surprises me that I didn’t just completely crash and burn emotionally. Don’t get me wrong, there has been anxiety and worry – we’ve had illnesses, hospital visits, apnea scares, etc. In those moments, anxiety and dread are there. I’m human. But overall, cystic fibrosis as a whole, it doesn’t keep me up all night worrying. I have moments of sadness about it. I would trade places with Zoe, take it away, do anything in my power to change it, of course.. but I have an overwhelming sense of peace about cystic fibrosis being a part of our lives. But just a part.
Which leads me to the point of my post. Over the year, I’ve obviously heard a lot of comments/questions. Hard ones. And I love that I have people in my life that can ask me the hard questions, but I definitely don’t always have the answer. Does it ever make you question God’s goodness? Do you ever feel like it’s not fair? Have you questioned God’s plan for you? If you’ve been praying for a cure every day, do you still believe in the power of prayer? Are you angry?
Some answers are easy. For some reason, I’ve never really doubted God’s goodness. And again, I’m not saying it’s because my faith is stronger than anyone else’s.. because I’ve questioned a LOT of things. I’ve just never really wondered if He is good, because I always seemed to know He is. And lately I’ve really wanted to figure out why that is. How I know He’s good, even in hard times and seasons of uncertainty. Reflecting on this year, thinking about this question, and looking at me daughter.. it was easy to answer.
I see God’s goodness when I look at Zoe Grace. When she waves hi to me as I walk into her room every morning. When she blows her daddy goodbye kisses before he goes to work. When she lights up because someone, anyone, walked in and looked at her. I see His love and His faithfulness with every smile, every giggle, every cuddle. Sometimes Zoe sneaks into our bedroom when the door is open. I find her sitting on the floor, staring at the door, waiting for me to notice. When she sees that I’ve seen her, she laughs and crawls away as fast as she can because she knows I’m going to scoop her up and tickle her and bring her back to the living room. She would do this all day if we let her. I mean.. I can’t think about these sweet moments and not know that He is good – even with chaos and life happening all around us.
Of course there are BIG reminders of God’s goodness, but the big reminders that we all seem to want are sometimes few and far between. The little reminders? They’re everywhere. Even in the sleepless nights, during sickness, on the hard days -there are text messages, meals brought over, coffee dates, babysitters galore. I guess I know He’s good because goodness can be found anywhere – and He never promised it would be everywhere (in this world). I can’t be angry that there is brokenness around me or that certain aspects of our life might be “harder” than others. It was clear to me very early on in my faith that if I’m going to follow Jesus, who was beaten, mocked, ridiculed.. then I can expect some hard times in my own faith as well. Jesus DIED for me, so I can go through life trusting & praising Him. It’s not always easy.. but clinging to Him instead of running from Him has always been worth it.
I wish I asked my husband this before he left for work today. I’m thinking about what he would say, but I already KNOW the answer. If I were to ask Mike how he trusts in Gods plans and how he knows that God is good even in hard times, he would say something simple like this: “Well.. when have things never worked out? When have we not ended up in someplace better than we thought? Hasn’t something good come from every hard time?” And isn’t that kind of logic SO TRUE. Here I am talking about noticing God’s goodness in the small moments of life making this way more complicated than it has to be: I know that God is good because He always has been. I know His plans are FOR me because of how far we’ve come. Every setback, every surprise, every struggle, it brought us HERE. We’ve always been able to look back on our hard times and see good come out of it.. way before Zoe was even a thought of ours.
Which brings me to a little note about prayer. Yes I pray for Zoe to be healed or for a cure for CF every. single. day. Yes sometimes it’s hard thinking I could pray for something every day and not see that prayer get answered. But you know what? Maybe I won’t be here to see some of the answers to my prayers. I pray for a lot of things that don’t always happen. But I still pray they happen. Maybe I won’t see a cure for CF in my time on this earth (I’m hopeful I will), but maybe it’ll come after. That’s still an answered prayer. And we definitely all know that sometimes our prayers are answered in ways we don’t expect. So I’ll pray – every day – and with great expectations. Because He doesn’t need to answer my prayers on my time, I just need to trust His. And by the way.. here are some prayer requests I posted a year ago:
- Pray for a cure to be found for cystic fibrosis. From what we’ve learned treatment has come a LONG way over the years, but there is still no cure. Every night I pray that a cure is found during Zoe’s lifetime. This hasn’t been answered, like I was saying, but there are new medications coming out that will make a huge differences in the lives of people with CF. We are on our way. I’d like to call this prayer “in process” instead of unanswered. Can that be a thing? I say it can.
- Pray for wisdom and guidance as we navigate our next steps as a family. We have a lot to consider when it comes to raising Zoe and we have some big choices to make. Since this request we have bought a house, started new jobs, figured out a way for us to be home with Zoe rather than needing full time childcare, and we were able to find affordable, great care for Zoe that even includes some grants and assistance programs making it easier financially long term. This prayer was answered. We made our next steps with confidence, and while I still have some fleeting moments of doubt, we have an overall sense of peace about it.
- Pray for a continued feeling of peace in Mike and myself. We trust God with this, we know we were chosen to be Zoe’s parents for a reason. We know that with Him we can find our new normal. We want to continue feeling confident and we want to continue trusting God. I have to admit there have been feelings of anger and doubt, but we want to pray those feelings away. This prayer has been answered. I can’t imagine NOT being Zoe’s mama. I think about how we were CHOSEN to raise this sweet girl and I couldn’t feel more blessed. We’ve found our voices in advocating for her and we feel confident right now in this season. He’s answered our prayers over this past year but we will be praying this forever!
- Pray for our Zoe girl to gain weight! That is the biggest concern right now and we need her to chunk up as soon as possible. I mean, have you seen her belly? Prayer answered. We always want her to gain weight, but this post was right after she was diagnosed and she was losing weight. Zoe’s weight gain has been great this year.
So in regards to prayer.. clearly He is good and He is listening.
If you’re still with me, I’m impressed. I just have ONE LAST thing I want to mention. This was also in my post a year ago, and it was more of a declaration than a prayer request:
Zoe will not be defined by her cystic fibrosis. She is a daughter of the King. She is loved and cherished. I will not let this diagnosis be her identity.
I’m crying reading those sentences because that God this was true, is true, and will always be true. We don’t look at Zoe and see CF. We see our smart, happy little girl who loves to explore. Who is curious about everything around her. Who thinks it’s hilarious when I put a hat on my head. Who throws her head on the ground when she’s upset because she loves a little bit of drama. Who throws her food off her tray on the floor to Daisy, but then screams because she wants more.
Zoe is so much more than a diagnosis. We will educate, we will advocate, we will never fight & I’m sure we will cry.. but we will continue to LIVE OUR. LIVES. Cystic fibrosis will not rule us, only Jesus can do that.