Perspective

This title has more than one meaning. I’m going to start with my son, Luke. If you’ve followed his story at all or read my husband’s book, you know he deals with a lot of medical issues. A few years ago we had to make a really hard decision regarding Lukes plan of care. We had tried the two main medications used to stop his type of seizures - infantile spasm. Neither had stopped them and this felt almost like a last resort. If those seizures didn’t get under control, he would eventually stop learning and developing. We had to decide whether or not to put him on a medication that could help but could also potentially permanently damage his eyes. After lots of prayer and talking we decided if there was a chance it would help him, we needed to do it. We had to sign a waiver and everything. He wasn’t on it too long, we didn’t see much difference seizure wise.

Fast forward to a couple of years later and his retinas still look fine and we breathe a huge sigh of relief thinking we are out of the woods with that medication affecting him long term. Until the next visit, which I believe was now almost a year ago. His retinas looked atrophied/unhealthy possibly from the medication. There’s no way to fix it, so really no point in putting Luke through more tests. I really don’t understand if that part actually affects his vision, I’m not a doctor and so this is my understanding from the questions I ask and the conversations with the doctor.

Not the worst news we’ve ever received but still not what we wanted to hear. Wearing his glasses continued to be a fight. So much happened, they weren’t a priority. We went back in January and the doctor said his retinas still looked atrophied but his vision was *maybe* a tiny bit better.

Last week we went for a follow up. His glasses are still a fight and so he just doesn’t wear them. After our wait and his initial exams the typically quiet, to the point doctor walked in the room and said, “you should be incredibly impressed and proud of Luke!” I said “ok…I am but what did he do?” Lol. He said “his vision improved by 8 times, really 10 times better than last time!” and he was really happy with his progress. It’s always nice to get unexpected happy news. He asked if we’ve noticed he can see better. I couldn’t think of anything specific but we have noticed he has been army crawling across the room to get certain toys or objects.

Luke has been weaning off a seizure medication for about a year now. It’s a very slow process that comes with really difficult side effects and we are finally down to the last few months. The doctor thinks coming off of that medication and not having seizures has really helped his vision and just overall awareness. Who knows what exactly is, except that he’s our miracle boy and seems to have a new perspective on life.

While Luke physically has a new perspective, I have had a change in my mental perspective. Sometime last week, I was at my dads grave talking and crying which isn’t unusual for me. I stayed for quite a while and by the end I almost felt like I was out of tears. I looked at his name and as much as it still seems so unreal and unfair to me, I think it just hit me that there wasn’t anything I could do about it. I know where he is and thankful that I know I’ll see him again someday. I told my dad instead of being so upset all of the time about what he’s missing on Earth and how much I miss him, I’m going to focus my energy on being what I miss so much about him to my kids and make sure they knew that’s how he was. Silly and fun, everyone’s biggest fan, and just always there. Does that mean I won’t have bad days? No, I’ve already had a few since then, but I haven’t let it consume me. I’m always going to have hard days and miss my dad. And that’s ok. No one can tell you how to grieve or how long it should take. It is not linear and there is no wrong way or right way.

I took the month of July off from making shirts hoping to be able to take a mental break and just refocus on the work I want to do and have a fresh start in August. I had been struggling so bad with my depression and anxiety, I fell so behind and just felt like a failure. I am still catching up…so close to caught up as my break is ending lol. I’m so thankful for all of the patience and grace my customers have shown me. I needed a break. It hasn’t been exactly what I planned but I should know by now that’s not how life works 😜. I was able to get away on a weekend trip with my mom. It was so much fun and good for both of us just to do something fun, talk, and have a good time together. It was so nice to do something “normal” and feel happy about it and enjoy it.

All that to say I guess it just depends on how you look at a situation. I wasn’t ready until now to have this new perspective. Again, I’m not always happy and laughing. Especially with depression and anxiety, I struggle most days at least a little bit. But I have realized that I’m fighting it and making progress and that’s what matters.

P.s - physical “new perspective” for me with work coming soon 👀 can’t wait to share details with you all soon!!