Not unlike all families, COVID-19 came in and reeked havoc on our lives but for a child like Abe - the upheaval in his daily routines and the inability to see his support staff did a real number on him. The last 9 weeks have been incredibly difficult as Abe struggles with not understanding why he can't go to school, why he can't go into a business to push shopping carts (literally his favorite thing ever) and why we can't go inside when we do get the opportunity to grab take-out. Not to mention, he didn't get to see his daddy, his super-cool bonus mom Lesli, his big-bro Carter and their sweet dog Lincoln (who he talks about endlessly) for a month while we worked hard to keep him safe. He's not been able to see his big sister and his brother-in-law-to-be either. Poor Abe's world got really, really small. With School and his private therapies - Abe has a team of well over TWENTY people to help him live his best life. As a parent of a child with complex needs (medically and educationally), it is beyond difficult for me to juggle working from home, care taking and attempting to be mom, therapist and teacher. When I let the school know that Abram was really struggling with understanding why his whole world changed and got turned upside down, they responded in a way that I did not expect! THEY MADE HIM VIDEOS. VIDEOS!!! If you know Abe - his treat is YouTube. He LOVES videos of people talking to him. After seeing him struggle for months on end in not understanding why he couldn't see his people - imagine my surprise when the school responded in the best possible way! They sent me these videos - just for Abe. It made me cry. To his school district - thank you so much for making these videos for him. It will be something I will remember and cherish forever. These little bits of kindness go so far with kids like Abram. It is much appreciated. Abe and I tried to do a Zoom meeting with his class. Something he was so happy to hear about yesterday that he cried when he learned he could see his class and his friends. He misses school. When the time came he became so overwhelmed he punched me hard in the face multiple times as well as his grandma. He is 90 pounds. His punches hurt. When I got him out of his seat he bashed his head and face into the wooden kitchen chair and started punching everything. I got off the meeting, crawled under the island and bawled. I left the house, came to the river, called my best friend and just came unglued. This is hard. I always tell my special needs mamas that every now and then that grief of what-may-have-been will come back to get you on occasion. Today, that grief hit me in the gut and knocked the wind out of me. It is hard to see his class operating a zoom meeting, participating and saying hello. It is hard that Abe doesn't know or understand why he can't see his people or why his whole world changed. Once the tears flowed, I could not stop them. I am angry. I am sad. I am resentful. I have raised my voice more than I'd like to admit. He will not sit for a movie. He does not play games. He cannot play independently. Every second of every moment he is awake he needs to be supervised and I am beyond exhausted emotionally, physically and mentally. I've always been mom, therapist, accountant, employer of workers for him, doctor and trying to teach him is so hard. In Abe's head.. that isn't my role. I don't know why of all things the Zoom meeting sent me over the edge but it did. Seeing all the cute little faces of his friends independently using a meeting to communicate only made my heart ache more. I miss our old life. I miss our support people. I miss our therapists and our routine and so does Abe. Sitting here on the river, crying my eyes out, admitting defeat and feeling the warm sun on my skin helps. Listening to the birds sing reminds me of simpler times. I just want for one day to be easy. I just want for my son to not want to hurt himself. I want him to understand that feeling happy to see his friends does not equate to hurting others. Some days I feel like I'm failing him. But all I can do us my best. I've literally have a massive medical team for him and none of them know how to help either because no one knows nor have they ever heard of his genetic disorder. Today my best is sitting here crying. Alone. Don't worry. I'll suck it up. I'll wipe my tears. I'll pull up my pants and do what I need to do because that is what moms do. But you know what? It's also ok to just let that grief out. So here I will sit until it is done. I am above all grateful for my mother who lives it with me as and who gave up her retirement to watch me crumple when things get hard. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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