Today was a long day and it's only 8:50pm, I am usually typing my blog closer to 10pm. I had Jacob in bed asleep by 6:50 and Owen right after. They both seemed extra tired as am I. Today was really a roller coaster for me and the boys and now I am just plain worn out.
I woke up around 4:45 this morning and was unable to fall back asleep, early morning wake ups usually make for a long day regardless so I should have seen this coming. The day started out great. Our amazing friends Beth and Greg donated money for us to use towards a cleaning service and the cleaning people came for the first time this morning and they were so sweet! I got a text from Jamie while I was at radiation that said "they just pulled out the stove to clean behind it, I am really embarrassed by how dirty it was back there but I am sold on this crew, they are amazing". I got home to a sparkling clean house! SO nice! Thank you Krista for the great referral.
However, both the boys are having a really hard time with so many people coming in and out of our house. So having the cleaning people here for a few minutes before we left for school put both boys in a bad mood. Add to that the fact that Jamie didn't drive us to school today but my sister did instead and poor Owen who has been doing so great with drop offs had a rough morning today. I hate seeing that. After we left them at school Kim and I had some time to kill before my radiation so we ran to Einstein bagels to grab a quick bite to eat. It was nice to chat and catch up and talk about plans for while my little sister Abi and baby Piper come into town TOMORROW! I am having a really hard time figuring things out because I really want to see Abi right away but with both Jacob and Owen really struggling right now I need to keep their routine as my first priority. Abi is staying at my sister Kim's house Thursday and Friday so it looks like I may not see Abi and Piper until Saturday or hopefully I can pop over to see them for a few minutes on Friday.
As excited as I am to see Abi and Piper, it sucks that we can't just be flexible and be getting together all the time and am desperately trying to get some normalcy back into Jacob and Owen's lives. Then I was talking with two of Owen's therapists today just questioning how he was doing in school. He has been struggling at home lately. He is very quiet, has VERY little patience for Jacob, will hit and kick which he has never done in his life and just seems not himself. His therapists confirmed they are seeing the same at school. His gross motor is still really lagging behind since his last seizure and socially he is not the same happy Owen. It just breaks my heart, I am sobbing just typing about it. He has been withdrawn and not talking as much at school. I wonder if he is being affected by everything that is going on with me, we try and hide it all as much as possible but he definitely knows something is going on. I know he is CRAVING one on one time with me but isn't really getting much. There is constantly someone at our house helping, Jacob has decided that he needs to be extra whiney and clingy and Jamie has been working a lot. I just feel so sad, like I used to give Owen 200% of my love and attention and now I am sick, run down, having to split my time with Jacob. It's the worst. I can assure you that seeing your child being affected by your illness just plain sucks. I feel sad, guilty, angry. Plus Owen needs more love and attention to begin with, he's got a lot of stuff that he overcomes on a daily basis and I have ALWAYS been his biggest fan and biggest supporter and I can't help but wonder if he doesn't feel that I am there for him anymore. I know everyone is going to say I am doing a great job and he is so lucky to have me but it doesn't erase the fact that he is STRUGGLING right now.
Then as I was talking with his speech therapist it occurred to me that this behavior change has definitely happened since all of my stuff but that is the same time that Owen was hospitalizes, had his seizure and started all new medication. I believe side effects of his medication are depression and mood changes. I guess you just assume you wouldn't see this in a 5 year old but maybe this is what has caused the change? Probably a combo of me and the medicine and maybe this medicine is what has him in such a funk? I am definitely calling his neurologist first thing in the morning to discuss his mood change and the changes we have seen in his gross motor.
So I titled this post "A long day, some good, some bad" and it looks like I really only talked about bad. Guess that was because I sat down to type while crying, so I got that out so I guess I should move onto the good.
I had a really great morning with my sister Kim. This was her first time taking me to radiation, well she came once before but stayed in the car with Jacob who was sick at the time. She was surprised that my scary white mask that I have to wear is hard, she though it was more of a soft mesh. Nope.. if you were thinking the same thing, that white mask is hard plastic. Once it's on it's so tight I can't even open my eyes. In case you missed the photo of me in my mask on the original post, I inserted it below.
The actual radiation treatment is super quick. From the moment the mask is secured it's about 5 minutes until it comes off and only about 1 minute of that is the actual radiation, the other 4 minutes is just them taking scans and moving the table to make sure everything lines up.
I met with my doctor afterwards who said that we may talk about reducing my steroids again next week to see if my headaches stay away. Will be nice to be off those completely.
Then I got to meet with Beth, an amazing woman from Froedert who wants to help me with my idea to set up everything for my random acts of kindness idea. I am SO excited about this. We will be working with some different people and brainstorming some ideas but I am really excited that Froedert is on board with my idea and I can't wait to see it come to life. Stay tuned for more exciting details to come regarding this! I am just beyond thrilled to be able to do this, to hopefully help create something that will help people, even if it's something small that will make their day a little brighter. It makes my heart smile!
After that, Kim dropped me at home and I got a two hour nap. I can't believe how my energy levels have dropped in the last 4 or 5 days. I am so fortunate to be able to get naps in, I would be a real wreck without them. Gives me the energy to make it through dinner and evenings with the boys. Jacob although EXTRA crazy lately has finally decided that he likes to read books. He has NEVER let me read to him, I would try every night before bed and he would take the book away, throw it on the ground and point to his crib and so I would just have to put him in there and leave. Well the last few days he has sat in his glider with me and let me read him books! Well ONLY books about trucks or tractors but it's so nice to be able to snuggle him. Then when he's done he points to his crib and says "crib, night night" and I kiss him and lay him down in there and he snuggles up and goes right to bed. Owen has ALWAYS been a big snuggler. I will PROUDLY tell you that I rocked him to sleep until he was just over 3 years old. I loved it and don't regret it at all. Man, sometimes being a mom is so trying and exhausting and sometimes it's just the best thing in the whole world!
Alright, I am off to have a little snack, pull out any loose hairs so they aren't all over my bed and then go to sleep! In case you were wondering I lost A LOT more hair today. My pony tail used to be like the thickness of a quarter as I had pretty thick hair, I would say now it's just barely the size of a dime. Oh well, that's the least of my concerns right now (especially since my wig is on it's way from Madison).
Thanks again to everyone following our journey and rooting us on. Thanks to Amy for the amazing dinner. I LOVE soup and was so excited when Jamie said you dropped off chicken noodle soup! It was just what I needed tonight! Thanks to my sister Kim for the great morning today too!