Now I Wait…

Alrighty then. So here I am waiting in a quiet space on the second floor of a hospital outside of the surgical unit. As I listen to the Patriot’s Day film soundtrack, I am reminded of nearly everything we have been through with Lucas up to this point. All of the trauma, the surgeries, the waiting, the fun, the autism, the grieving, the fear, the anger, the sadness, and the quiet. It’s so hard to realize what’s happening as it’s happening. Acting as a first responder doesn’t always allow me the opportunity to cope with what’s going on in the present moment. Today I am allowing myself to feel. I am growing, and bettering myself. With that comes a lot of feelings. All the feels.

halloween

When we arrived, Lucas was a little anxious. He instantly wanted his horror action figure toys. A child life clinician came in, and was surprised (slightly scared) by the toys, but happy with how fun and informative he was. He taught her all about the characters, and showed them how many heads they each came with. This sort of thing is not normal, but in the autism realm it sort of is. These toys bring him joy, and that’s all that really matters. He plays with them appropriately, as they have costume contests and hurt each other sometimes. He may be six and a half, but he’s more adult than most grown ups I know. He has a disconnect to reality at times, but it’s cool because that gives him the ability to have a fascinating creative imagination.

pants

In true Lucas fashion, he had to use the potty at the worst time. As he was doing his thing, I took a look in the mirror. I’m losing weight. Finally changing shape. My body is catching up with my mind, and it knows what to do. Can I just take a moment to be proud of myself for putting good food, and a lot of water into my vessel? Taking care of myself has allowed me to better care for my children. I’ve still got a lot of work to do, but this is only the beginning. I’ve been here before, and I know I can do it again. My kids deserve a mother that is not depressed, or lazy. A woman who can keep up with them, and that is happy to encourage them to follow their dreams. I will show them as I lead by example. I’m working on writing new music, and that has also been very cathartic for me.

superkid

I’m nervous. I’m always nervous. However this surgeon is the best. He put in Lucas’ g-tube years ago, and came out to tell us how easy the procedure was. I’m hoping for the same result today. I know that surgery always comes with a risk, but that’s to be expected. I was happy to contact the Marty Lyon’s Foundation today to tell them that his blood is finally showing enough improvement for him to have this port safely placed into his chest. He couldn’t have this without platelets. He only has platelets because he’s on a drug that creates them for him, so they are technically fake. He destroys them. His immune system destroys his own blood cells. It’s kind of crazy. I just hope the small port goes in okay, and he doesn’t have any bleeding in the OR. Praying for a smooth recovery. This kid has been through enough. His blood still shows us that his immune system is not working properly, and it may never work well again. There’s a chance he could kick himself into remission. Praying for that, as he needs to have some fun and live a “normal” life. As normal as humanly possible.

supermom

So here I am. Now I wait. Someone just called “Lindsay!”, and I was thinking NO, it’s way too soon. Thankfully it was another woman with the same name. Super Mom can rest her worries for another few moments until they really call her name. As soon as he wakes up, I’m sure they will want me back there. I told them he becomes “Angry Grandpa” after anesthesia. He may be in pain, but he shouldn’t have too much. He also should be given benadryl and nausea meds. This should be easy. In anticipation of the hour passing by, I have to go check the board to see if he’s out of the OR yet. I packed up my backpack, my chargers, and threw away my food trash. Moved my seat to be closer to the reception desk. I checked the board, and it says “Procedure Still In Progress”. It’s been an hour. I guess this is the time where my anxiety begins to kick in.

board

I’m probably going to drive myself crazy staring at this board now. Everyone is assigned a number when they register for privacy reasons. So I keep looking up waiting for his number to turn blue, which means he’d be in recovery. The surgeon said he would come find me right after he was done, before Lucas woke up to tell me how it went. I’m here man, waiting and ready. My heart is thumping out of my chest. I’m sure it will be fine, as it always is. Recovery will be a lot of Lucas not feeling well, and we won’t be able to go home until he is fully awake, vitals are good, and he’s drinking water. Harrison is at home without me this morning. I bet Mike is taking super good care of him even though the milk machine is gone. Rachel is watching Joanna, and Chris is doing his errands.

I think I need to stop this blog now, and practice some deep yoga breathing. Thank you all for reading, and for your ongoing love and support. I always update my instagram, facebook, and eventually there will be a vlog from today.

xoxo, Linzy

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