But, I am getting really sick of the day in and day out of the Same Thing. There is no variety in this house. I am still determined to have at least ONE productive thing to note each day with Harry. Lately though, it's a lot of videos and story time, which is fine. On a good day, he will be really engaged in those videos and stories. One in particular the other day was amazing, actually! We listened to a story in the Epic Library from school called Sled Dog: Powerful Miracle. It's a true story about a sled dog named Isobel who loses her sight. The story is beautiful, and I was really excited to remind Harry about our friend Cathy and her blind pugs, and the books she has written about them! We FaceTimed with her and Harry read the book (played the Read Aloud) to her, and she absolutely loved it! And he really loved sharing it with her! He chose to read that story again the next day, with a big smile. That was a good day.
Today, however, was more representative of our days in general. For the past. few weeks Harry has been sleeping practically through lunch, and he might play a little with me in the afternoon but most of the time has seizure activity and just wants to snooze in my lap. Often when the nurse gets here, mid to late afternoon, he perks up. Today he actually woke up earlier in the morning, and I had ONE activity I wanted to do with him. One. He was good for a couple zoo videos, and then the rest of the day with me was either seizures or sleeping. Heidi is here now, and he's finally alert. All I want to do is make a video of him using his blue button to tell his teacher Kelly about the rainstick he made with Lori, for their lessons about Australia. But nope. I'm hoping tomorrow will be better. I want to get him up in the morning and start doing things- help me bake, get in his stander, read some stories together, play on his iPad, practice eating some foods...Is it me? Not to compare, but I don't know any other severely complex kids who aren't at least responsive to their moms. They make progress, they smile...have I just not done enough? Anyone would say I'm a great mom and do a ton, but I'll always feel like I'm not doing enough as long as he continues to show no interest in me. School is where he is productive, and at home with Lori in particular he is productive. Not with me. I am bored to shit because I just sit here waiting for a small window where he is awake and aware that I am in the room!
Anyway...my Noonday business is dead because none of my hostesses want to do online shows, understandably. My photography has been the one saving grace in my life...I've been offering Front Porch Photos to document this time in the life of Planet Earth, and asking for donations to Amego. It's been amazing! I have a reason to get out of the house, actually socialize with friends from a safe distance, even meet new people, I have "work" to do when I finish the shoots, and I am raising money for a great cause. This project has definitely kept me sane and happy and productive, and it's my way of being able to do something for those in need. I'm really proud of these, too. Here's the link: https://studio.shootproof.com/v3/274593/gallery/11964758
The other thing I have discovered in Sseko Designs. A company similar to Noonday, but they work with one group of women in Uganda, making clothing and jewelry, to enable women to go to school. It's a beautiful cause. The items are fun and pretty- I got to see them through an online party hosted by Jennifer P. Because I have so much Noonday I really was not expecting to purchase any jewelry, but one charm really resonated with me. It's a cactus. I don't know why it spoke to me so immediately, but it did, and when I read the meaning behind it, I understood. I'm not sure how I will wear it or carry it yet...somewhere that it will stay with me and I will have it as a constant reminder that I am all good.
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