A change of perspective
The thoughts of the future are daunting sometimes, or most of the time when I think of what’s to come with Eli and Ella and MLD. Many parents or caregivers of a special needs child will go through these same thoughts and fears. If you allow it, it will eat you up while robbing you of the joys of today. These thoughts, unfortunately have been something that have taken over me in the past and they have thrown me into deep and dark places. Fortunately we don’t have to stay where we are forever and we can choose to work hard to better ourselves every day. I am slowly learning to live in today while cherishing the memories of yesterday all while trying not to anticipate what tomorrow will bring. It can be a challenge, but when you succeed, you find that there can be just as much joy, if not more in store for you. Living in today has also helped me change my perspective, which in turn is helping me change my life.
Some before and after, eye opening changes of perspective haven’t come easy but they have come from a heart that has been hardened and then softened again thanks to the beauty of imperfection and living a life that I am choosing to embrace no matter what tomorrow may bring. Finding messages and meaning in my mess is a gift.
Eli can’t clean himself properly without help – I GET to help Eli make sure his body is clean, while cherishing the gift of gratitude for his feet that still work and his hands that can still do so many things. I get to look at his sweet face while he allows me to shave his mustache. I notice his skin and ever changing facial structure as he turns more into a young man. When I put cream on his legs after the shower, I close my eyes and thank God for what he can still do. I notice his biceps on his thin arms that still allow him to fight with his brothers, play his video games, feed himself, play with his wrestlers and so much more. Although his toes overlap and his legs are more disfigured, somehow God allows him to push though, and I thank him for every working body part. I thank God that Eli loves his life. I also thank God for letting me find so much good in a situation that has broken me over and over time and again.
I HAVE to be their best friend every day – I GET to do EVERYHTING with them. Most days start with jokes and Alexa humor at breakfast…they don’t mind me being there helping them as we plan out the day. When they want to go for a walk, ride a bike or go swimming, I get to do it with them, I get to hear their joys and pains every day. I am blessed to be able to be that person that they want to talk to, watch movies with, joke with, lip sync with, do tik tok’s with, play baseball and minigolf with. I rarely miss out on anything BECAUSE i get to do it all with them.
They just want ME when anything goes wrong – When they are sick I STILL get to snuggle them, I get to sleep in their room, watch movies, bring them food and whatever they need until they are better. When Eli feels unwell, he doesn’t mind me sleeping in his room (at just about 16 years old) to make sure he isn’t having any issues. When Ella just had Covid, I got to sleep in her room every night, making sure I could take care of whatever she needed.
They look to me for many things and I am blessed to be able to be that person for them. The sad parts will always be there, but with the help of God, and continually working on myself, I am slowly learning that a change of perspective is all you need sometimes to realize just how lucky you are.
Fear Not 
What a beautiful perspective that, unfortunately, takes something like this to realize and be mindful of. Thank you for reminding me that when my grandson wants my help with something or he only wants to play with me that I need to be thankful that I GET to do that. I have wished it away on occasion and this was just what I needed to hear. As you already know, it does take a special relationship between a mom and child to be “their person” and it’s neat that they have you.