Just Some Spots: Part 2 - An Update
I heard that high-pitched screaming at two different octaves coming from the living room. Again. I turned off the water, left the dishes in the sink, and sighed as I went in to referee yet another fight that morning.
As I walked into the living room, I surveyed the scene: Hattie had Queen Elsa and was making her dance around the room. Eliza was sitting on the stairs, whining and crying and pouting about how SHE wanted Elsa. 20 other princesses were scattered around on the floor.
I took a deep breath, looked Eliza in the eyes and said, “Sometimes we have to wait for things that we want. You can either choose to sit and watch her play with it and feel sad that you don’t have it right now, or you can play with something else and enjoy that while you’re waiting. “
As I spoke to my daughter, I knew that God was speaking to me through the words that were coming out of my own mouth. He’s good like that.
You’d think that after a 5+ year adoption process, I’d be okay-ish at waiting, but there I was, whining and complaining. Again. This time it was about unreceived test results and another unknown period of waiting.
God, in His goodness, reminded me that life is full of valleys and mountaintops (and lots and lots of in between routes), but every step of the way God is faithful. It was clear that I had a choice to make: I could allow the enemy to use this unexpected turn of events to steal my joy and cause me to remain in a constant state of worry. OR - I could use this unexpected turn of events to, by God’s Grace, press in and trust my Heavenly Father while finding joy in the wait.
You see, I firmly believe that the enemy wants to rob us of our joy. He hopes to deter us from the plans and purposes God has for us. If he can’t deter us forever, then he’d be happy to do it for a season. Honestly, in this season, it could be easy for him to divert my focus away from God’s truth and His promises. It could be easy to focus it, instead, on this potential crisis we are facing. The unknown is scary. The Mama Bear in me wants to protect my children from every single thing they might face. But...I refuse to let the enemy win.
After all, how many times in my life have I read Philippians 4:4-7? “Always be full of joy in the Lord. I say it again—rejoice!...Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” That chapter of Philippians goes on to remind us that in order to have peace, we must “Fix our thoughts on what is true, honorable, right, pure, lovely, and admirable. Think about things that are excellent and worthy of praise.” Finally, it also reminds us that whether we have a lot or a little, in any circumstance, “We can do all things through Christ who strengthens us.”
It is with that attitude and God’s good reminder of finding joy in any circumstances that we walk forward into this season of waiting, continuing to trust in the Lord’s goodness.
-First, we want to say THANK YOU. We can almost tangibly FEEL the prayers that are being lifted up by so many of you (once again) for our son, and we are so grateful.
-We went to the eye doctor to check Judah’s eyes for signs of tumors. We are praising God that there were no signs of Lisch nodules (spots) on his irises and that his optic nerves appear to be flat, both signs that point to no tumors. We will continue to praise God and believe in those initial results even though the ophthalmologist said the tumors don’t usually show up quite this early. She’d like to reevaluate him again in 1 year. Judah probably won’t mind, though, as he loved the sunglasses they gave him for his dilated eyes. He seriously wore them for almost an hour (see photo above)!
-We’re thankful that we finally received a call from the genetic counselor about Judah’s blood test results. We are praising God that the neurofibromatosis test came back NEGATIVE. We will continue to trust Him and believe in those results as well, even with the caveat that there’s a 30% chance that this is a false negative. We can’t officially rule out NF yet, so his beautiful brown eyes, blood pressure, head circumference, and skin will continue to be monitored for now.
-Judah also tested negative for Legius syndrome. Part of us hoped that those results would come back positive, as it’s a disorder that mimics the skin pigmentation of NF but does not typically come with side effects like tumors growing all over the body. We are still praising God for all negative test results.
-We will continue to trust God and His plans as more genetic testing has been ordered because pigmentary mosaicism (the pattern of Judah’s spots) can be a sign of several other chromosome disorders, which (be proud of me) I have not googled at this time. We’re still hoping and praying that, as someone put it, the “unique artwork God chose to give Judah’s skin” really is JUST some spots.
I was reminded through a sermon I heard recently that, as believers, it’s not that we don’t experience the storms of life. We do and we will. BUT because of our covering in Christ, we can experience the storm in a different way with a different perspective. So here I am, learning to joyfully dance in the rain. We are so grateful, though, that we get to dance with our Judah Mahesh.