I often wonder if I will ever feel like we are doing everything we need to be for Kendall. I feel like I have given her my all. But with a child like Kendall, there are soooo many things to consider. I have to prioritize too. If we are focusing one hundred percent on getting rid of seizures, or controlling blood sugars, or monitoring vitamin supplements and nutrition, it leaves little time to enjoy the everyday. But those things are the most important, as they keep her alive, thriving, and out of the hospital! It is very time consuming.
I'd like her to stop relying on her g-button for feeds, but if we rely on her to eat orally for every meal, it takes FOREVER! She also fatigues quickly, and doesn't enjoy being pressured to finish a plate of food.
Encouraging Kendall to make her own choices, or make a request on her communication device before we start an activity, or eat something, sounds great in theory, but there are only so many hours in the day. We have loads and loads of appointments to get to, and school four days a week. We don't have a lot of down time.
I also enjoy spending mommy time with her. Cuddling, rocking, singing songs and just being. I don't always want to do joint compressions, or therapy, or make her use her left hand.
I think as a family, we have a pretty good balance. Justin jumps in when I'm over it, and I do the same for him. We have great support with grand parents, and Kamden knows how to do it all too! And without our nurses, oh, I can't even think of life without our nurses.
But it gets overwhelming sometimes.
This past weekend, as part of my Anatomy and Functions of the Visual Systems class, I spent the weekend in Lubbock. I felt like I was on the edge of my seat the entire time. Everything we are learning is so important to me. I am personally and professionally vested in this program. We dissected a cow's eye ball, and I didn't throw up! We watched videos of teachers working with kids just like Kendall and began learning how to do a Functional Vision and Learning Media Assessment. We had a Low Vision Specialist review eye conditions and present a lot of the new low vision devices. The Texas Department of Assistive and Rehabilitative Services presented their programs to our class. We had a deafblind lunch experience by wearing blindfolds and earplugs and relying solely on our other senses to make it through our lunch. (this was the most amazing experience for me, as I now understand why Kendall doesn't like it when someone makes her put her hand on something...) And the whole power point on Cortical Vision Impairment was of course near and dear to my heart! Just when you think you know everything about it, you realize you've only touched the surface of the complicated relation between the brain and everything else!
I left with my wheels spinning. But I also left thinking I should be doing more for Kendall. We should be assisting her with her vision more than we are. Our Dr. should have presented us with other options for contacts, and should have already referred us to a low vision specialist. Kendall needs more magnification because her lenses are gone, and she doesn't have inocular lens implants...diabetes will affect her whole body, including her eyes if we allow her blood sugars to fluctuate...the risk of Glaucoma with her high pressures isn't something our Dr. should be brushing off. My list can go on and on.
I also left feeling compelled to share everything I know. I'm often broken at the thought of families in the same position who don't have the same resources we do. Adjusting to your "new normal" as people ("experts") are throwing their opinions and suggestions on you, and constantly saying you aren't following through like you should can be devastating to a mom who just yearns for her child to interact with her. Families who have teachers that are quick to blame the parents for not following through or who give up too soon. Or my favorite, when teachers say a mom is in denial because she still expects great things out of her child with multiple disabilities. (I'm a fan of the "Least Dangerous Assumption") And then you have the kids who don't have anybody fighting for them. I wish I could fix the world.
It was very emotional and exhausting weekend, but I feel charged to keep going. I may putter through this one class at a time. I may or may not go back to work anytime soon. But I'm learning things that will help my sweet girl, and others along the way. I just wish I had more time for everything!
And then I see this sweet face. We could all learn from the simplicity of her mind. She's happy when she's happy. She doesn't hide it when she's sad. She expects the best out of everyone, and deserves the same in return.