Blog · August 29, 2016

It’s Been a Rough Week

I am so glad Nicky and I survived last week because it was exhausting.

Monday and Tuesday I drove us to Stanford and back with an overnight stay. One way is 6 hours. I was trying to explain to my parents how amazing but tiring this trip is for us. I love driving, always did. We have our “stops”, our routines. I’ve come to know certain rest areas like the back of my hand, and certain truck stops are very cool and my faves. We love stopping at Casa De Fruta, or Bravo Farms, we know Harris Ranch is close when we smell the cow stench, and I always stop at the San Luis Reservoir to take a photo to compare with older ones of how “low” the water has receded. A LOT, BTW. The California drought is no joke.

Once there I have to unload the car and set up the room for Nicky, bed, pump, feeding, bandages. Then this time I changed the bandages of his leg afterwards. The next morning I have to repack everything in the car, get Nicky ready (it takes a while) and off we go to our appointment, where I have to change the bandages of his arms. Then I drive back. We normally don’t get home before 6pm.

l-432910After a couple of days of “rest” (I am always beat after this trip), where I have to do loads of laundry among putting away the new shipment of bandages and its garbage galore that comes with it, this week I also had to take Nicky to CHLA for his Iron Infusion and a Dr Appointment. Of course this 90 minute drive couldn’t give me a break, so because of an accident on I-14, it ended up being a 2.5 hour drive. So, while we were almost an hour late for the appointment, it was okay because they understand our driving woos. Our miracle with both Stanford and CHLA is that they care deeply about us, know us well and are willing to fit us in to try to help us. We still had the infusion to deal with, however. For that we ended up starting 2 hours later than scheduled (and we were thankful they could take us at all!!) simply because the pharmacy was closed between Noon and 1pm so they could not get us the iron Nicky needed when we were ready. The good news is that Nicky’s infusion didn’t hurt so much as the labs last week (where he screamed and screamed the entire time-ugh), and that his labs showed his numbers are okay overall. The one number that is always high is the inflammation, which could be lower if Nicky was able to take baths weekly with a little bleach, but we gave up on those a long time ago because of the pain associated with them. At this stage of the game we have to pick the less of two evils. If the only way to lower inflammation is to torture my son, I refuse. As long as we keep that number under control with other means, so be it.

Of course Nicky is not my only child. This week Connor had his “back to school” night, so we spent a good 3 hours at his school Wednesday night to meet all his teachers and check out all his classes. It was interesting if only because I had such trouble at this particular school with Nicky, so I was a little apprehensive to say the least. One of his teachers even remembered Nicky and told me he inspires him til this day. Wow. So far so good… we’ll see I guess!! Connor also has karate, which I take him to every Saturday morning, but this week I had also promised to take him to the fair, which I had already prepared for. I got us the tickets plus the unlimited rides bracelets. Sometimes I think I am either crazy or I forgot how old I am. Let’s just say that this morning I felt like I was run over by a truck!!

When Nicky woke up this AM he told me his life was boring.  “What can we do to make it more exciting?” I asked him. He thought about it for a moment and then said: “I don’t know. Everything hurts, I don’t want to move, it’s all a double-edge sword”.

I hate thinking that while his little brother helps me being a “normal” mom, at the same time, Nicky sees his brother do things and have fun and he’s stuck at home, not wanting to go because of the heat, the pain associated with “transferring” and everything else makes that him so miserable. Sometimes I wonder if my tiredness is not strictly physical but mental as well. Can anyone feel tired because their mind is? I want to make my son’s life better. I am constantly looking outside of the box. I search far and wide, as his dad does, to make Nicky comfortable, happy, to make him feel loved and important, but sometimes I feel that’s not enough. I don’t know what else I can do. I am frazzled.

Thank you so much, as always, for your support <3 It means more than words can say.

Love & Light,