I've mothered six other babies through this stage and yet have learned new things this time around. I would love to share what I've learned this time with you.
1. I have a new set of eyes for the world around me. I can spot those with birth defects a bit more. In addition, I carry with it a new compassion for those having been through similar situations. It's sort of like that in many areas of life. If you've been through cancer, you understand those going through it more. If you've been a military spouse, you understand deployments and running a household on your own more. You can easily connect with those who've faced similar situations and take a walk in their shoes. That is what I see and feel for those mothers who've cared for someone born with a defect or disability.
2. I've learned a whole new meaning on the word patience. Patience is more than just waiting your turn but putting yourself along with your desires aside. You realize a lot of things aren't very important. What is important is the opportunity to help another, carrying with it a new perspective on time. There is more time required for feedings as well as cleaning the necessary supplies for the NAM. I set aside time for many doctors appointments and patience for the wait for Jon Luke to be cared for by them. But I am okay with it and the wait is worth it.
3. I've learned that even though he will have surgeries to repair his lip and palate, God formed him this way. And the way he is now is perfect not only to God but to me too. I love the way he smiles with his cleft smile. Yet, I know I will miss it once it's changed. I love every part of the way God formed our son and I will be sad when they change it, even though it'll be for the best.
4. Often times, we fear the unknown and worry our hearts about it all. The reason we are so anxious about things in general is that we create a fear on what will happen or how things will go. But that doesn't stop us from going through something. It's still going to happen. It's typically out of our control. So that fear we developed over whatever it is that is worrying us is not worth the fret. Before Jon Luke was born, I was anxious about how I would be able to help him not knowing exactly how it all would be. Basically, I worried myself over nothing. I was wrong. Everything is just how it is supposed to be. It's all part of God's plan and future for my life. And I wouldn't trade any of it for anything different. I love being a cleftie mom.
5. I have joined cleft forums and I've seen daily many littles having their surgeries and appointments. I am able to be more prayerful for others. I see the worry in those mother's hearts when their wee ones are taken back to be sedated. I watch them come through and I've heard those mother's words for prayers when there are close calls during the surgeries. We will be in that place soon. Until then, I watch the encouragement and prayers being lifted for them on a daily basis. The power of prayer is amazing. How neat that so may can come together all over the world to pray for one another. These are people they don't know beyond a picture posted and the mother's words asking for prayers. It's amazing the community that is formed.
There will be more new milestones for me along the way. However, this is it for now. As far as updates go, Jon Luke went on to see Dr. Granger last week. He re-adjusted his NAM and sees lots of improvements already. We go in again next Thursday and he will soon be adding nose stints to help shape the nose. Our little guy is doing well with the NAM and is able to eat a bit easier with the more closed-off artificial palate in place.
As for the rest of our crew, we are having fun enjoying life. We play with powdered sugar, run around outside as much as possible, play pirates, dance to music, and anything else we can find to have fun. God is good, y'all!
I really enjoyed reading your update. Jon Luke is such a cutie! I love the one of him in the blue plaid shirt. What a little man! As usual, you are handling challenges with love and grace. God is so good. Thank you for sharing what He's doing in your family. And those kids covered in powdered sugar! I alternate between laughing and feeling really frustrated for your sake. Your sense of humor is a beautiful thing.
ReplyDeleteGod is amazing in gifting us in the areas we never knew we needed! :) Love your love for life and how you share it with others!
ReplyDeleteHe has such big and happy eyes! And I love that father and son dressed up the same, he looks so proud! Praying for you in this very unique situation, one that, you are right, I've no insight on. Thank God for his grace though!
ReplyDeleteFarin
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