I was looking down at my precious Lucy, gently rocking her just after her early morning nursing session. She was back asleep and nuzzling her sweet face into my arm to get comfy. I was trying to enjoy just a few quite moments with just her in the darkness of the morning when a whisper snuck into my mind, “This is how it was supposed to be with Jonah.” And just like that, the moment was sabotaged. Every long night, tear-filled day, disappointment, and feeling of grief flooded in, drowning out the peace I felt holding Lucy.
The emotions aren’t as raw as they once were. I’ve taken many steps toward healing. But I’ve come to realize that this particular grief may stay with me forever- evolving into different forms along the way. It’s a bit like a scar from a traumatic injury. The wound itself heals but leaves its mark, never letting you forget what happened.
I am fully aware that a lot of babies are difficult or high maintenance at some point in their lives. But a baby with special needs can be more than difficult, and likely has unending difficulty awaiting their future. Honestly, Jonah’s early days were a nightmare. I had no idea what to do to help him and no idea that there really wasn’t anything but time that could help him. I carried around a heavy guilt for not working on therapy exercises with him often enough and for being so impatient with him. I was drowning in anxiety and slipping into depression just slowly enough that I didn’t notice. All I wanted was for him to be able to do the same things all of the other babies his age were doing; but he just couldn’t. So I was stuck holding him even though, at the time, I just wanted a few minutes away from him.
Today I’m watching Jonah crawl around the room to different toys, squealing with excitement at his dog barking, and enjoying his sweet snuggles. His smile is brilliant and infectious. He is very loving and has never met a stranger. It’s hard for me to remember those tough days now. But it took a long time for me to get to this point. I didn’t enjoy his baby days. I couldn’t! He was not fun. He was not easy. I was not emotionally available to him. When I was in the thick of the struggle with Jonah, I never thought I’d get past it. But, I kept on hoping. I kept on imagining him walking over to me to be held, hearing “mommy!” from another room, or sharing my lunch with him. I pictured that he would crawl across the floor to his dad when he walked in the door. I dreamed of the day I would look over to see him doing something he shouldn’t and have to rush to save him. I’m still just imagining some of those things, but I have so much hope that each one of them will become our reality one day.
Speaking of reality, you should know that I definitely still have bad days- plenty of them! I still see other kids run up to their parents, reaching up to be held and feel my heart drop into my stomach. But I know that, one day, Jonah will reach up to me. It may look different, though. He may scoot his walker over to me and hold one hand up. I hope he can call my name one day, but he may never be able to. He may push a button on a machine that calls my name and I will know that he wants me. Whatever the future looks like for us, I am excited for it. I hope he can run and jump and talk and write and read and climb and put his shoes on…but more than any of that, I hope that he is kind, that he is loving, that he helps people, that he is filled with joy, that he is honest, that he is humble, that he doesn’t give up, and that he loves God.
I think it’s healthy to be realistic, but please don’t forget to keep on hoping! I know it’s hard! I know there are days that your hope will get shot down. There will be disappointments and backslides, but let hope be renewed in your heart! Do take the time you need to grieve at the different stages. But then bravely begin to hope once again.
I will allow myself to rejoice in how easy and fun Lucy is right now, without feeling guilty. I will rejoice in how far Jonah has come. I will rejoice at each small progression he makes. I will rejoice as Lucy begins to crawl at only 7 months of age and I will rejoice when she begins to walk, even if she does so before Jonah. I will continually hope and look forward to the day he can do the same things. I will not let their differences cause me sadness. I will treat them as individuals and celebrate each of them becoming who they were meant to be. I will get through the grief by choosing to hope! I pray you will do the same.
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” James 1:2-4 ESV