Hippo is out of school. Yay, no early mornings, school lunches or classroom volunteering for the next few weeks. But wait, he’s home. Everyday. All day. ALL DAY! Omg! Can’t this kid get a hobby besides Pokemon Go and Harry Potter reading marathons? Like a hobby where he is big enough to go run errands by himself for mama, in like Anaheim! LOL! Don’t act like after your kid asked for his 20th snack you didn’t mom scream! It’s the scream that is so high pitched that only moms can hear it.
Well, the kid ain’t going no where! Everywhere I go, he goes. Everywhere I don’t go, he don’t go. That includes Remicade treatments. Usually when I go to my treatments, he’s at school. So, now that he’s out of school, I have to take him to the treatments with me. As a single mom, my options are limited as far as child care is concerned. Babysitters run between $12-15/hr. Remicade treatments last 2-3 hrs. This is not including the drive over and drive back. Sometimes you have to account for LA traffic. We are looking at anywhere between a $48-75 for babysitting just to go to treatment. Tack on the very expensive parking at my luxurious, Los Angeles hospital. Plus gas at $3.05…LAWD, it’s too much!!! And since I am a mommy with a mommy who owns her own business, it is very rare that Hippo can be with his grandma. That means…the Hippo joins me on my journey to wellness!
I actually don’t like taking him. Not because I don’t want him with me. I just think it’s one more reminder my little pumpkin has to have that mommy is sick. I’ve never experienced having a sick mother, or having to watch my mommy lie vulnerable in a hospital bed or in an infusion center hooked up to IV’s. But ever since he was born, this has been his life. I try to shield him from the pressure and trauma as much as possible. But, life is funny that way. Sometimes it doesn’t allow for your plans. Which is why Hippo has come with me to hang out for a few hours while mommy gets her serum, PX-41. How do you prepare your kid? Here is what I do. I make it fun! I’ve taken some of the seriousness out of it and found the silver lining.
It’s Not Medicine, It’s Serum
Hippo has created a new name for, Remicade®, it’s PX-41. He calls it serum, not medication. He compares it to the serum that Captain America received in order to become, Captain America. Just a way to lighten the heaviness of the situation.
Make It A Bonding Time
We stop to get coffee & milkies (flavored steamed milk) from Starbucks, and bring a book or watch a movie together. Once I’m all hooked up, we cheers to the PX-41 and sit back with a book or sit together and watch a movie (if we have a private room. I would love to get a ear phone splitter just for this purpose. Once we get into the book or movie, he forgets all about my IV.
Craft or Study time
I’ve on occasion brought some school work for him to do while there. We can also bring a small craft box. By the time my treatments done, he has created crafts for the doctor, nurse and another patient.
Gotta Catch Em All
Have them look for Pokemon in the office while you get your IV put in. Once, Hippo was in the room when I was getting my IV put in. It failed, I started bleeding and had to be stuck again. He talked about for four months. Yea, not a good idea!
Post Treatment Treat
Once we are all done. We go home. Mommy lays down for a bit. And then it’s time for a little Yogurtland or Churros for the Hippo who has been so patient!
Our diseases are such family diseases. Everyone is hands in. Everyone is affected. What I am hoping is, that one day Congress will finally pass the Medicare Home Infusion Site of Care Act of 2015 (S. 275 / H.R. 605) so that patients with Medicare can benefit from home infusions. Sometimes they forget that a large majority of Medicare patients are parents with disabilities under the age of 40. Being able to be home to get my infusions, not up root my child, will not only be cost effective and comfortable. But in the long run it can help with the normalizing of the special needs families like mine, have. It will just even out the playing field. But until then, I will pack up snacks, goodies and my little Hippo into the Batmobile, and head down over the hill every month!