Life has been busy lately. Cooking takes hours a day and Maddie is no longer sleeping at night. Seizures are slightly improved, but she has not felt good in a couple of weeks and is really lacking energy right now. We are working on this diet (and all her medications) to see if we can get her feeling better. So life is crazy for us as usual.
November is a month of birthdays for the people I love. Today is my sister’s (Happy Birthday Kathryn!) and last weekend was Brandon and Lance’s birthday. There are honestly too many to mention, but most important to me is that on the 30th, Maddie turns three! I hate to admit it, but I actually dread it. I had so hoped that we could turn things around by this birthday. It is a little tough to celebrate a birthday knowing that your child is worse off developmentally this year than on her last birthday. But such is life with catastrophic epilepsy. And so I will suck it up, shake it off, and hope for a really fabulous 4th birthday. Because she really deserves it.
We spent last weekend at the beach at Figure 8 and had a fabulous time. It’s amazing how the beach can just make everything in life seem better. It is alot of work to travel on the ketogenic diet because the stuff that makes my kitchen complete now is not common in most kitchens. So I have created a traveling kitchen of sorts. Although packing it all up is a major pain in the hiney, it was worth it for the time at the beach. Which we hope to do again soon. We are currently back in Charlotte as it was time for Maddie’s monthly oncology follow up appointment as well as her first keto diet follow up.
We have already had her counts checked (paranoia still lurks nearby)but our actual doctor appointment is Monday. According to the counts from Thursday, Maddie’s leukemia is still in remission. We are still waiting for some blood results that relate to the keto diet to decide what our next move there is. On the subject of counts and cancer, I found an omission in my last post here pretty startling. I posted that update the week after the 2nd anniversary of her cancer diagnosis. And I meant to mention it in that update. But it slipped my mind.
I would never have thought that were possible. That her leukemia could slip my mind……Admittedly, we have plenty of other crap to worry about right now with the seizures, and Brandon deployed, and this crazy diet, but the fact that the important milestone of 2 years past her cancer diagnosis could just slip my mind is pretty cool. Of course, she is nowhere near out of the woods. But it feels nice to realize that leukemia isn’t the first thing I think about most days.
I meant to try to keep this short but, in case I don’t get around to posting again before Thanksgiving, I want to mention how incredibly thankful I am for the life I live.
I live in a free country, made that way by the sacrifices of many people who have fought and died for that freedom. Hearing about Brandon’s experiences this deployment helps reinforce in my mind how lucky we are to be citizens of this great country. I am incredibly aware of the sacrifices families all over the country are making right now, missing their loved ones as the holiday season approaches. I meant to post earlier this month to thank all our Veterans and their families. So thank you!
I am also thankful for the financial security that I am lucky enough to have because of my wonderful family and my husband. I can only imagine how our stress would be magnified if it were accompanied by financial hardship because of the catastrophic illness of my child.
I am thankful for the amazing people in my life, most importantly my family. The support that I have had through the last two years is more than any person could ask for. It is astounding to me how much support I receive from my Mom and Lance. And it only recently dawned on me how difficult it is for everyone else in the family, having to deal with the isolation that I have asked Mom and Lance to stay in along with us to try to keep us all healthy. My siblings and step-siblings have in a sense lost these years with my parents because of their vigilance about germs and trying to stay healthy. And none of them have complained about it (at least to my knowledge). I had really hoped to “lift the ban” before these holidays, but it probably won’t be until after this nasty flu season.
And finally, I am most thankful for my husband and daughter. Without the support and love of my husband these two years would have been completely impossible. And Maddie inspires me every day. I am so thankful she is here, and despite the enormous challenges she faces, she does it mostly with a smile. Cancer and epilepsy has taken alot from us, but she is the most precious gift I have ever been given. These experiences, while often quite terrifying, have made me a better, stronger, more loving person.
I leave you with a few pics of our amazing child.
I know, I know…..her hair….. My late Gran (whose birthday is also coming up….Happy Birthday Gran!) would be saying, “Get that hair out of her beautiful eyes!” I wish I could, she hates hair clips and I refuse to cut it again. I’ll figure something out. And isn’t that smile so goofy? But the great thing is, she smiled when I asked her to, and that is not something that has happened in a while for us.
Happy Thanksgiving everyone! If there is any lesson to be learned from us, be thankful for the good things in your life. I know I am.
Love to you all,