Just when I think that I've kind of figured out how to navigate this journey we are on, we get thrown a curve ball and I feel like we take a few steps back.
The past few months have been unbelievable for us. The boys have made so much progress and are hitting milestones we have always dreamed about. I knew in my head they would start to walk eventually, but I couldn't let myself believe we were as close as we are because I didn't want to put unrealistic expectations on them.
And just like that, they have started standing on their own and walking. It's the craziest thing to me! I still feel like it's almost an out of body experience when I look over and see them walking without assistance. It's pretty amazing that I get to witness this miracle every day. And trust me when I say I will never take this sight for granted. We have worn out our knees praying for this day, and spent countless hours in therapy offices, on horses, in pools, etc. Doing anything we could to help them get to this point...and we are finally here!!!
It will still be months before they are completely walking without their walkers, but I just can't believe that they are even close to that!!
And with the excitement of their development the past few months, I have felt such a peace and gratitude for everything we are being blessed with. A reassurance that all of the boys and our hard work is finally paying off, and us trusting in God's plan is reaping some very physical and tactical blessings.
But then this week we were thrown a curve ball and I still haven't been able to fully accept or process through it all. I try to keep my expectations realistic and know that there are going to be some really tough doctors appointments and stuff the boys are going to face. I know the reality that they could very easily have kidney failure or transplant, liver issues, and retina deterioration or blindness. These are all a really ugly and unfortunate reality of Joubert Syndrome, and many kids have and are dealing with these situations right now.
So when we went to their yearly eye doctor appointment, I went in knowing that there could be bad news. I actually tend to get really nervous the night before and lose my appetite and can't sleep. So I had prepared myself that there may be some findings with the retina and was worried specifically about Parker because he had failed his eye exam with the school nurse.
The boys cooperated well and have become pros at all sorts of doctor appointments. They listen well, cooperate and the doctors and nurses always fall in love with their charm.
I was so happy to hear that Parker's eyes look great and have dramatically improved and his eye sight is great and he adapts really well despite the other eye issues he is dealing with (nystagmus and strabismus). But I was so caught off guard when the doctor was really concerned about Lane. His eyes had worsened significantly since last year and has astigmatism (basically the curve of the eye lens causes images to be distorted). The astigmatism is not the same in both eyes, so he is tending to use his right eye much more than his left. Left untreated this could lead to some pretty serious issues and most likely would lose vision in his weaker eye. So they are putting Lane in glasses and hoping we can treat this early so that he has the least amount of issues in the future.
My sweet baby Lane is getting glasses.
And I'm not sure why, but I am kind of devastated over it. And it's actually not devastating at all, but for some reason it is to me right now.
I had prepared myself that there could be issues with the retina, and I had prepared myself that most likely Parker would need glasses, but I had never even entertained the idea that Lane would need glasses.
And the reality is, the biggest blessing in the world is that their retinas are healthy and show no signs of deterioration! And another huge blessing is that Parker's eyes are doing great and there is nothing to worry about with him. So I'm not sure why I am so distraught that Lane is going to wear glasses. I absolutely LOVE little kids in glasses and it melts my heart when I see little kids with them on. Like seriously I kind of am obsessed with kids in glasses. And we know a ton of beautiful and adorable children who wear glasses and are doing great!
So why is it such a big deal to me that Lane is going to be wearing them?? If anything I would have thought my reaction would have been excitement because I just adore children in glasses. But I guess I just keep thinking that it's one more thing to add on top of everything else.
One more appointment, one more medical expense, one more thing that is going to have to deal with, one more thing to make him different than his peers, one more reason to get bullied and picked on, one more thing to overcome.
And I hate that my mind goes there. I should be happy we found this so early and can work on getting his eyes stronger. And I should be happy because {hopefully} the glasses will be a huge help and he will be able to function at full capacity because he has the tools he needs.
But I can't help but say I am sad. And having to process and mourn through another unexpected turn in our journey. I'm still wrestling through this with my faith and why we have to live in a continual state of surrender. Why when things are going so well, we have to take steps back when we already have so much to overcome.
I know *intellectually* the answers to these questions, but my heart and emotions aren't there yet. With time and growth and maturity I will get there. And I guess that's what this journey is mostly about anyways. My expectations and how God is using the boys to change my plans and use them for His purpose.
Stay tuned for a picture of my cutie rocking some shades in a few weeks!!
