I'll tell you, this guy can break me. He has put me through the ringer for sure. He has made me stronger and better than anyone else could have. But, my heart aches for him. I want to fix him but my magic powers aren't working right.
He is now 6. When he was first diagnosed at 2, I told myself, and many others that I would have him fixed by 6. Well, we are there and my outlook has changed over the last 4 years. He is Tate. He doesn't need to be anything else and although he has come so very far from where he was, he will always be my special Tate. I am happy with that. Really. I am thankful for the blessing of raising him. He is happy and loves life, on most days. What breaks my heart, though, is that his words are trapped in his cute little head. He tries to say everything and says many things but it is very hard to understand. He can't form the letters well so the words are jumbled. I try so hard to understand but even as his mom, I can't always tell what he needs. I remember the first day I sent him off for school, I eagerly picked him up to see how his day went and then I cried. He couldn't tell me how it went. I had no idea what he did or if he had a new friend. Was his teacher nice or mean? Did they have recess or sing a song? I cried for myself and for him.
I started to get used to Tate not being able to tell me details as he could communicate just enough to get his basic needs met. But it is getting harder. He is smart. He knows what he wants but can you even imagine what it would be like to not be able to communicate? Not be able to tell someone what you want or what you need? I can't and when I think about this, my heart aches.
Yesterday was one of those heart ache days. The bus came and dropped him off in front of my house. He stepped off and as the bus was leaving, he started screaming for the bus. "Bus, back!" The bus went on and he was hysterical. I have never even seen him like that. He wouldn't leave the front yard. He wouldn't calm down. He even tried to go after the bus on his bike. Nothing I said or did helped. I could not understand what he needed or what he may have left on the bus that was so important. I felt so helpless. I tried to guess but nothing was right. I sat with him and cried. I told him how sorry I was that I could not understand. Then I got mad at him for carrying it on too long; that didn't work either. I kept telling him that the bus wasn't going to come back until tomorrow. He still wouldn't come inside.
I left him outside with his dad and even called the bus depot. I asked them to have the driver call me after her shift so I could find out what he may have left behind.
After an hour of Tate waiting outside, now pushing 5pm, he came in the door, shouting with all the excitement a boy could have! "Bus! Back!" Sure enough, this angel bus driver saw after her shift that Tate had left the snack bucket behind. It was his job to bring it back the next day to share snacks with his friends. It was so important to him and he had left it on his seat. She saw it there and after her shift, she came back to our house to bring it to him. She is my hero.
I held back the tears and hugged him and shared his joy. All evening, I had a sad heart thinking about my inability to hear his voice, that I could not understand his need and fix it. I waited to get the kids to sleep and my plan was to take a nice hot bath and to cry my eyes out. I started the tub and hopped in. After about an inch of water filled the tub, the water went cold. Then I cried. Could I not even have a little hot water to drown my sorrows in? Nope. I dried off, all one inch of my self and crumbled in my closet and cried. Mom tears.
I pray and hope some day this little one can tell me everything. I won't even complain one bit if the stories go on too long. I promise.
Being a mother can be hard. I left my friend, Annabeth's house today as we discussed her little one fighting for her life from cancer. I am sure Annabeth has been crumbled in her closet as well. But, we push back the tears, dry off and fight. We both agreed these little ones were here to make us better. We just both wished they didn't have to suffer for our sake.