Sorry it’s been a week or two. Aside from the fact that I can’t seem to sleep a full night or turn off my dang brain for ten short seconds, we’re doing fine. We really are.
We’ve received much more devastating news than being told our son has albinism. I mean, we were told that Amelia was going to die right after birth. And then I carried her wiggly little baby self in my belly for five long months after that, and watched her die in my arms two days after she was born. And then I cried and cried and felt so empty inside and out for so long.
So in comparison to that whole phase of our life, we really can do this. It certainly won’t be a piece of cake, but Owen will live and thrive in his own sense of normalcy. What a blessing that is, you know? He doesn’t know any different, and who am I to tell him otherwise?
I won’t sugar coat it, though. Yes, it sucks. I’m rubbed a little raw with emotion right now because I feel for him and, just like Amelia, wish so desperately that I could fix him. Yes, I’d love for my sweet little Owen to have perfect vision like the rest of us. But he doesn’t, and we can’t change that.
But sometimes I do wonder, why me? Jack had torticollis (couldn’t turn his head left when he was born) and pretty severe speech problems, Amelia died from an incurable birth defect, and now Owen has albinism and is almost blind right now. I can’t seem to catch a break here. Am I even capable of producing a healthy child?! Should I even be having kids?!!
Is there something I’m missing? I have plenty of friends who the worst they’ve been through with their children is the flu. What the heck.
I’ve cried a lot over this, about why Heavenly Father would send me these trials over and over again. And they’re not even MY trials – they’re placed upon my sweet children instead. On top of how harsh life already is, my Owen baby will struggle time and time again with low-vision in a vision-focused world.
If I think about it for too long, I just get all worked up and frustrated. My mind is plagued with “what-ifs” and sleep always seems to be juuuuust out of my grasp because of it.
There isn’t an answer (other than plain ol’ genetics) as to why Owen is affected. So I have to be done mourning what was never meant to be.
Our family has been blessed with the most pleasant, joyful spirit, whose vision is steadily improving teensy bit by teensy bit. One day we’ll notice he sees the poster above his changing table. And then the next day we’ll notice he sees his fox. And then all of a sudden, I swear he can see the lights on his play gym.
Or maybe just the butterflies on top, but hey!—progress.
He’s all smiles and giggles. You’ve really gotta work to get him going sometimes, but if he’s in the right mood he’s quite talkative. He’s cheerful and so darn happy to be alive.
Owen, you will thrive and can do anything you set your mind to. As much as I’d love to protect you, mark my words—I’m not going to be the one to hold you back.
I’m sorry. I don’t have any answers. But I’ve heard that when vision isn’t the dominating sense the other senses become more powerful. So maybe Owen was meant to hear things, feel things, smell things, taste things that a visually dominate person would never notice or understand. You take him to the beach and he will hear the surf, smell the ocean, taste the salt in the air, and feel stuff that would slip right past everyone else. The sound of the ocean is beautiful. And if memory serves, there will be quite a few overcast days to make the beach more accessible for y’all.
All our hope that he will see more than the doctors ever thought possible.
Amy, my sister Courtney shared this perspective with me too. It’s a thought that some days keeps me going when it’d be much easier to just give up on him. Thanks for always thinking of us. Miss your family.
Alie, My heart just aches for you. When you first posted about Owen, I thought “Them again? This is so unfair.” But as I’ve watched you handle this new trial, as with the passing of Amelia, I have been amazed by your grace and strength. Heavenly Father knows exactly what He’s doing, sending your three sweet babes to you & Tyler. You are amazing. You are inspiring and comforting people through your use of technology. Thank you for candidly sharing your story.
Thanks, Garin. I think I’d be silly NOT to share, because it helps me see there are so many blessings and good things along with our trials. And goodness, how they make us grow. :)