There is nothing natural in planning for your child’s death. I have heard this so many times from others who have had to do it, but until you’re faced with it it really doesn’t sink in. Your the mom, you’re supposed to be able to fix anything. Kiss their owies, hold them when they fall, give them the meds they need. But it’s when you can’t fix it that life just doesn’t seem right.
Lately, we’ve had to face some of these tough decisions. Not because we want to, but because we probably should. And with doing this I don’t want you to think that we’ve given up on gorgeous little Juliet, or that we don’t believe that God could miraculously heal her, because we know He can. We just realized that we should be prepared for all situations. As hard as it is.
This last couple of weeks we have discussed some of the possibilities. That’s the bugger with Trisomy 18. Every case is so different. There is no one to tell you what’s going to happen, how it’s going to be. I’ve had trisomy moms contact me with their stories of their kids that are 3 and 7 and living good lives, trying to bring hope…but how hopeful can I allow my heart to get?? The doctors can’t answer your questions, people who have gone through the exact same diagnosis can share the pain and same feelings but the outcomes aren’t always the same. You have to think about all of the possibilities. What if Jules doesn’t make it to her due date? What if she does? What if she’s still born? What if she lives? How long will she live? and the lists go on. I’m really not saying this for a pity party, I’m just stating the facts. It’s a lot to digest.
Through this all Ryan and I have hope. We have hope that God is using Jules and her valued life even inside the womb. How ironic that our church sermon this week was focusing on the 6th commandment, Thou shall not murder and the value of life, even life in the womb. I have not once thought of Jules as a fetus, she’s always been my baby…but how sweet of the Lord to remind me that her life, no matter how long or short, is of value to Him. That it really doesn’t matter if she doesn’t get to grow old with us, because she was His to start with. And we grab onto that. And take hold of that. Day by day.
Jules loves night time. She comes alive. My belly literally has been bouncing at night with her kicks. Sunday night she wasn’t bouncing. She wasn’t even kicking. I told ry she was being quiet but didn’t really alert him to my fears because I myself didn’t want to go there. I would push on my belly and try to get her to move and I would think I felt her, but it would be so faint. So different from my fighter. Needless to say I didn’t sleep good that night. I woke up and told Ry to keep his phone on him because we might be going in, and then I raced downstairs to have my coffee in hopes that the caffeine would get her going. Precious girl finally did kick. But it was a little too real. For a while I was finding myself upset with Jesus (my emotions are a constant rollercoaster so sorry if you think I contradict myself, many times I do…so thankful for grace and mercy) but I was upset because in my mind it wasn’t supposed to end like that. I needed to meet her, she had a bigger purpose to serve, I was mad I have to be so aware of the kicks inside my belly. I was just mad.
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD.”
She is not ours. God is good. God is love. We trust you Jesus.
Jules received some beautiful gifts the last couple of weeks. I came home to a bag on my table with this gorgeous blanket in from the ladies in my bible study. The ironic thing was that the kids and I were just looking for a blankie for her that same night. Kynlee thought the Minnie Mouse one was fitting but it’s not quite what I was looking for:) And the coincidence really wasn’t ironic at all. It was Jesus saying, I got this. I’ll take care of her. And thank you to the ladies who listen to His voice!:)
And Papa Tom and Grandma Sue wanted to get her a special outfit as well. It’s the most gorgeous thing I’ve seen, and probably the most expensive piece of clothing my kids own:) But perfect for Jules!
We are blessed. Blessed by your prayers, blessed by Jules, and blessed by God.