This has been a fascinating process of heartbreak, struggle, acceptance, peace, joy and fear. And not necessarily in that order. I truly thought I was in a good place. I was ready. Miles is coming. I have had false labor several nights now so the bags are packed and the birth plan is printed.
Yet I started to get more emotional. I felt a lot more stress. I had what I would describe as small panic attacks. I was scared and I wasn’t sure if it was because of Miles’s disability or just because I was having another baby. I went on acting normal and functioning the same as usual, but I was shorter with my husband and had less energy for my son. Something was happening and I just didn’t see it coming.
I ended up picking a fight with Bryce one night. We had been having a lot of tough conversations about a plan to become financially self-sustaining in this seemingly impossible scenario. All the help was putting Band-Aids on something bigger and the options we began discussing upset me tremendously. Our main option was for me to go back to work full time. Even saying the words made me bawl hysterically, not because I don’t like working (I actually miss it), but because I couldn’t stand the thought of being away from my sons when they need me.
I have read so many blogs of other Spina Bifida parents in this exact same scenario. It’s one of the most expensive life-long birth defects so nothing we are experiencing is abnormal. We went from living life simply and comfortably, to feeling like we are drowning. I believed that the fear of this is what was causing my stress but it wasn’t. Finances have never consumed me and I’m not very materialistic. I don’t care about those things and I’m not afraid to go without. I am just so appreciative to God for the beautiful life and family He has given me. There was something different gripping my heart and Bryce identified it.
I had switched teams.
We clung hard to God when we received Miles’s diagnosis and there was no doubt I could not have gotten through that time on my own. But as months went on and I accepted his disability and the possibility of worst case scenarios, I forgot that I still needed God. I became comfortable and complacent and things were back to normal again. The birth of Miles was still far away enough that I didn’t have to be overly prepared but I was far enough away from the initial news that I had time to accept.
As the approach of his due date came near, the realizations became clearer. My son has a disability. He doesn’t perform well on tests and we aren’t sure what the problem is. I won’t get to hold him when he is born. This is terrifying and I don’t know what our new life will look like. I stopped standing next to God looking at fear and I began standing on fear’s side looking at God from a distance. I had switched sides without even knowing it. We prayed for God to bring us back on His side and the next morning I woke up feeling like a different person. No tears, no anxiety, no distrust.
None of this means that the fear doesn’t still exist. It’s present but I’m no longer on its team. Fear is on the other side of the battle field and I will fight it with fury because it steals joy. Nothing can take joy away from having my son. No amount of money. No diagnosis. No nasty doctor. No discouraging ultrasound. No sacrifice.
I’m back on the team of hope, joy, faith and insurmountable love. I know now that God wasn’t going to let me have Miles until I learned this lesson.
"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." -Deuteronomy 31:6