A Day in the Happiest Place on Earth followed by One of the Hardest Days so Far

We had planned a trip to Disneyland for Isaac months ago...way before the diagnosis. It worked out perfectly in between my treatments so we went ahead with it because I was feeling fine! We have taken Ike to Disney about every 3-5 years…but let’s just say it may have been his last trip there. It was so hard. In case you didn’t know, Autism and unpredictability do not go hand in hand. As he has gotten older he has gotten more rigid with his schedule and what he “thinks” should be happening. So it was hard to explain to him why Radiator Springs Racers was closed for half of the day. (He eventually got to) And how do you explain to someone like him why the airplane has been delayed for hours and you can’t go to the airport yet. Waiting in long lines is excruciating and Disney was pretty busy on Monday! Even with the disability pass they offer it was just too much.  Don’t get me wrong any day in Disneyland is a happy day! Feeling the warm sunshine was heavenly. And we found moments of joy with Ike amidst the hard times. Like the churro breaks we took. And how happy he looked when he was on his favorite rides. And the absolute calm that came over him watching World of Color. Yesterday before we caught our plane we made a stop at the beach and he got in! It was so dang cold. But he loves the ocean so much and he doesn’t have many chances to go there. It was so fun to watch him. I wish so bad that I could make a perfect world for him with no waiting and no crowds and with everything on schedule. And also it would be nice to be able to teleport him to the beach and back in a matter of seconds.  It was a hard couple of days…but also HAPPY! 

The night we got back to our hotel from Disneyland I took a shower and found that my hair was falling out in massive clumps:( I knew it was coming. I just don’t know how you prepare for that and the feelings that come with it. When you see someone wearing a “cancer beanie” you know they’re sick, you can’t hide it anymore. And I’ve heard people treat you differently?

This led to one of the hardest days yet. Last night Brandon shaved my remaining hair off 😞 it was not fun. He was such a champ, I know it was hard for him too. We both cried. I’ve wished so many times that the style for women was to have shaved heads. I don’t love doing my hair. And I don’t have the greatest hair. Funny how when it’s gone you would do anything to get it back. I have so much more compassion for those women I see in the produce section with a cancer beanie on. I’m that girl now. I do have a couple of great wigs that some of my “way back” besties  helped me pick out a few weeks ago. I’m sure I’ll wear both wigs and beanies. So just give me a smile if you see me around and don’t feel sad for me…I’m really ok with it now…I think, and remember that I’m still the same person…just without hair! 

Today was supposed to be the start of chemo round 2, but my blood draw this morning showed that my white blood cell count has not recovered from the last round yet. So…we are delaying it until next Wednesday. 

Thank you all for your prayers and good wishes and good energy, and anything else you’re sending my way. I couldn’t get through this without it all💗