Yesterday was a good day. Not for any particular reason except for adding an awesome team member to our team Ty. Team Ty requires the most compassionate, patient, creative team player. Someone who adds knowledge, expertise and support.
Yesterday was a good day because I met with someone who is all of this. But even more importantly, as parents, especially for me MOM, I feel like I will learn so much from this person. For most of this journey, WE are the experts. WE are constantly having to educate others on how best to support, and treat Ty. Even when he was little, we discovered he needs “this amount of pre-medication because other wise he remembers EVERYTHING. When he was in hospital for bowel clean outs pre cecostomy, and they had to use an NG tube to feed large quantities of golytely for days.....we had to consistently tell the docs to run it slow. Like super slow. Like so slow it’s just dripping. Because otherwise he blew up like a balloon, literally and would vomit and not stop vomiting for days. This is our experience with him. Despite ‘textbook’ says to do this...which we heard a lot, we know our kid. We know him so well. Where he and I literally have a communication system. He doesn’t need to say a word, we speak with our eyes. We started doing this through his so many hospital stays. When he was so little, so vulnerable, and didn’t understand much of what was happening. And even today, when he loses his words, when he is unable to communicate in a more meaningful way, when he is stressed, confused, overwhelmed, and even mad sometimes, he still communicates with me with his eyes. I know what he is telling me. I get it. He understands my eyes.
We have fought hard for him whether it be for an appropriate education, for medical needs, for therapies, everything. We have needed to educate everyone around him. He is unique. He is a more complicated patient. He is a more challenging child. He is also loving, sweet, and smart. This is the side of Ty that few know. That few understand. That few take the time to understand. Many don’t want to understand.
So to find someone who brings hope back to us, who wants to understand, who wants to support in any way they can, no matter what that looks like. Someone who we feel we can learn from. This is huge for me in particular. So many of my days, years have been spent researching. Researching to help Ty. Trying to put this complicated puzzle together piece by piece. Thirteen and a half years of reading, researching, trying to understand. Trying to make sense of it all. When you have a child who from day 1 is not well, you go into fight mode for answers to help them. This is our child. No one is going to tell us ‘sorry nothing we can do’....which we did hear ALOT.....we never gave up, we promised him through all of this, we would NEVER give up on him. NEVER! No matter what. When things got tough, and boy did they get tough, when others clearly gave up, we pushed forward. We found a new path. We explored new options.
We are happy to have a new team Ty member who wants to go down this path with us. Someone who is ready to explore options as necessary. Someone who sees the uniqueness in him and wants to celebrate that, with us. We look forward to you coming along with us on this journey.
