Admiration

I've been thinking a lot on admiration lately simply because of something a friend said. They have adopted a special needs kiddo who is blind. She mentioned people admiring them for it and asks that people not do that....because they didn't do anything special.

The crux of the issue is her heart. This beautiful couple doesn't think they did anything special. And yet they did. The fact that they view the adoption, knowing they now have a child that faces life long challenges, as nothing worth admiring, is beautifully and profoundly logical. They want everyone to know that if they can do it, you can do it. They don't want people putting them on a pedestal, in awe of the choice they made, because they want you to know you are just like them. They want you to realize they aren't special and because they aren't, you don't need to be special to adopt either.

There is 100% truth in that.

You don't need to be special to adopt. You just need to follow God's call on your life...showing up and saying yes even when it doesn't make sense because He WILL equip you. Some people don't think they are called, don't want to be called, or ignore the call because they think they aren't something special.

God works all the time with naysayers, skeptics, and the least expected. He delights in showing off when we simply show up. We don't have to have it all together in order to be used by God. I know I'd never be ready if God waited on me to have everything perfect before proceeding. I'd never get anywhere.

What makes my friend so "special"? She simply said yes and continues to do so. She said yes to hope. She said yes to risk. She said yes to challenges. She said yes to commitment. She said yes to the unknowns because she knows Who knows our unknown. How many of us are willing to do that?

Neuro Check Up 7 Years Later

No, that title isn't a typo. I really did wait 7 years between neuro appointments. The last time we went it was a joke (Dr said stem cells aren't helpful,  it was a shame Liam is blind, said if he had ataxia CP it was the worst he's ever seen, blah blah- I mean he was older than America so I just uh huhed him at every turn) and other than giving us a new med to try it wasn't a helpful or productive appointment. After finding out the medicine had some pretty serious side effects I never even put Liam on it.

Fast forward to this summer. Liam's weird jaw issue has not abated in the least. Some days he's great and other days it's a non stop battle of forcing his jaw shut against him cocking it open and gasping for air. So, we decided to see a new neuro and prayed there was something that could help Liam because baclofen isn't cutting it. Maybe he needs a higher dose? I dunno but that's a different Dr, so off to Chapel Hill we went.

Three hours of driving, with two of them spent listening to Liam cry, we arrived. I hate that drive. Anyway, got called back pretty quickly and to my utter horror, the exact same neuro walked in the door from 7 years ago. Now he's older than dirt. My jaw dropped open the moment I saw him and I turned to my mom so he wouldn't see me gaping at my horrible luck.

He grinned and said hi and asked me how the medicine worked all those years ago. I told him I wouldn't know because we never used it and honestly, if we had, I've had too many sleepless nights since then to remember if this particular one worked well or not. He did spend a lot of time learning about Liam and how he is doing in school and with his eye gaze and spent a lot of time playing with Liam's sweaty hands. He asked if we knew what kind of cerebral palsy Liam has and I told him he told me years go that he felt Liam has choreoathetoid CP. Or it could be a really bad worst case scenario ataxia. He was playing with Liam's hands at the time and said his lovely loose hands and free movements of them showed to him that Liam has choreoathetoid. I asked him how many kids he's seen like that and he said 4-5. It's not very common and it's stupid hard to treat. Stupid hard.

He mentioned the medicine again, levodopa, which is a Parkinson's med, and felt it was worth a try. He said Liam has damage to his basal ganglia (that has never been shown in his MRI) and that that has caused Liam's rare form of CP. He said some kids with different disorders that affect the basal ganglia learn to walk after going on this med (that will never happen for Liam) and it could really help with his extra movements. He also mentioned a patch to help for the days Liam likes to push all his saliva out of his mouth instead of swallowing it. Love those days.

I decided to give them a try and he went out to get the rx. Ten minutes later he still wasn't back. I go out in the hall to find him and one of the nurses asked me what I need. I tell her I'm looking for the Dr and another nurse said she heard him in his office dictating notes. I cried WHAT a little loudly and the ladies started laughing. I told them I hadn't been back in 7 years because I was hoping that Dr had retired. They laughed even harder and said they have heard that before and others were wishing for the same thing. One of them went to track him down and another 5 minutes later he came back with the rx. As he walked in the door he told my mom she had come with me the last time (good memory) and then asks me if I want a business card. I said sure and then he hands one to my mom saying she could have one too since she came with me, like he was handing out lollipops for good patients. He left and we walked out the door laughing.

I couldn't be angry. Frustrated yes, but not angry. I should have checked to see if it was the same Dr seeing Liam, so that is all on me. I had assumed he's retired. I'm not kidding he's OLD. I was hoping for young fresh eyes on Liam but maybe that will happen next time. I did feel the appointment was useful as we had two new meds to try. He said we would know right away if the levodopa would help and I'll leave that for another post. ;)

You blog?

Recent conversation:

Friend-You have a blog? 

Me-Yeah, I actually do. 

Friend-What's it about?

Me- Well, nothing lately. 😜

There is so much to write about lately and I just never put my thoughts to the blog. 

I'll start to ease my way back in because there was just too much drama this summer to put in one post. I'll start by saying we put Liam on cannabis oil and its the best thing we did. 

His recovery from his double osteotomies this year was long and painful. He didn't move his legs for months after the surgery and for many months more he barely moved them. When he finally started to pull his legs up while on the floor, he would get them stuck and then cry because he couldn't put them down. 

And then there was the sleep. He would wake up miserable many times a night. It's times like that I'm thankful he's in my room because I can roll out of bed and be right there to reposition him. 

I'll explain in another post how I got into cbd (cannabis) oil but it has been a game changer for Liam. He's been on it now for 4 months and we've seen a lot of benefits so far. He's sleeping, his pain from his hips is gone, and that leg thing where he would get stuck in position? Gone. 💚

Summer was challenging this year. I'll save those moments for some later posts if I ever get back here. Needless to say, I'm happy to welcome fall. And hopefully less drama. 

Opinionated

I imagine we are all opinionated. Liam's no different. He isn't able to freely verbalize his strong opinions as we are wont to do, nor can he tell us he disagrees with our leanings. But give him the chance to express his feelings on a school subject and he can tell you he doesn't want to participate.

R: Liam it's time to write your sentences. Do you want to write about flowers?
Liam: No
R: Do you want to write about birds?
Liam: No
R; Do you want to write about bees?
Liam: No

The teacher hears this exchange and says, "Do not give him a choice on writing his sentences! He's a boy, of course he isn't going to want to do it. You have to make him do them."

Add caption

R is always the sweet softie. "OK Liam. You have to do all the sentences."

R: Flowers _________?
 Liam: Grow

R: Birds___________?
 Liam: Fly

R: Bees ___________?
 Liam: Buzz

Show off.