We are stuck in the medical abyss of questionable diagnosis. As a mom I am struggling as I watch Simon deteriorate each week until its time for another blood transfusion. His eyes get a little more yellow, he wants to just sit on the couch, he gets really cold, he gets cranky.
I like answers.
I like solid evidence that I can see and follow.
I like knowledge and books and reading to understand things better.
I don't like doctors not having answers.
I don't like two separate and very different diagnosis.
I don't like the thought of bone marrow tests.
I don't like the unknown.
But that is where we are today.
We are in the belly of the unknown with no great outcomes.
If you are interested in the great debate of Simons medical mystery feel free to ask questions or look up Thalassemia B major and Diamond Blackfan Anemia.
I've been in close contact with both foundations and am thrilled to find that either way we have an amazing support team!
In the middle of all the phone calls, appointments, blood draws and hospital visits is one of the bravest boys I know, our Simon. He is amazing.
These days he is discovering freedom and the ups and downs of it.
He has tried to ride a bike for the first time and discovered that falling down means getting hurt.
And that getting hurt means mom comes running.
And that mom kisses bruises and bandages cuts...even the fake, made-up ones.
He has tried ice cream and discovered that too much leads to tummy aches.
And that mom is worth listening to.
He has learned that when he cries at night someone comes to comfort him.
He has learned that tantrums don't get you out of time outs.
He has planted flowers and is learning that beauty is worth waiting for in life.
He has learned to walk up and down the stairs and that hard work has benefits.
He has learned that he can color a picture and that mommy and daddy will proudly post it on the fridge.
He has learned that someone in his life is crazy, over the top, smitten with him.
He has learned that he is part of a family.
He makes me furious one moment and rolling with laughter the next. In the last 5 weeks I've found my way to falling in love with this boy. Some days are immensely difficult and some days are immeasurably, beautifully filled with joy.
I want answers for all of Simons tomorrow's and I'm working hard to get there, but for now I'm so thankful to be a part of Simons today.