Yes, but....

Warning.... this is an honest post. I love my children and I hope that I show that enough [doesn't everyone?]. But these are real thoughts, real emotions, and real conversations I have with myself and others.

I had a friend ask me the other night Do you ever just wish that Noah would pass so that he wouldn't be this way anymore?

It was a very honest question and I gave a very honest answer of yes, but....

Honestly, I have thought about it before. In this world Noah is so limited. He tries, he tries so hard which is why I will never give up on him. But it hurts my heart. I hurt with him every time I see him crying because I just don't know what to do. And he can't tell me how to fix it, no one can.

Whenever someone asks me about Noah's prognosis for this disease it breaks my heart. I have to be honest and say that everything that I have read says that Noah will not make it past adolescence. But then I always add a glimmer of hope saying that there are miracle stories of people with Connatal PMD that are in their 20s and doing just fine. I like to think that Noah will be that miracle. But we just don't know.

Noah has already started the game with so many things against him. He has the trach and g-tube. He has a visual impairment that has categorized him as legally blind. He has seizures and muscle spasms. A lot of these symptoms don't come until later in a lot of patients with PMD. It just seems so unfair that he has drawn the shortest, crappiest stick in the whole pile of short, crappy sticks. It makes a horrible disease even worse when you see how badly it is affecting him. And it sucks. It just sucks.

Now here is where the but part of my answer comes in...

But then I think about what he would be like if he didn't have this disease. He wouldn't be the Noah that I love so much. Of course I would love him because he's my baby. But if he were to wake up tomorrow, completely healthy and cured, trach and g-tube free, I wouldn't know what to do with him. This disease has made him who he is and it has made me who I am. People always say that their disease or sickness doesn't define them but of course it does! You can't tell me that a diabetic would keep taking insulin and monitoring sugars if they woke up disease free. No way! Same with Noah. He is who he is because of this disease and I love him more than anything. So in a way I am thankful and glad for his disease. PMD made my Noah and I wouldn't trade him for anything.

Which is why I can't give up on him. It is why I fight for him every day. Arguing with doctors and therapists who think they know what is best. They don't know PMD and they certainly don't know Noah. Sometimes he is hard for even me to figure out but I do the best I can and I hope and pray every second that I am doing enough. Saying enough. Being enough for him.

So I guess the real answer to the question is that I just wish that whatever amount of time we are given with Noah is spent in the best way possible. I wish he wouldn't hurt or cry or be frustrated with his body that simply won't do what he wants it to do. I have to believe that he understands me when I tell him I love him. I have to believe that he can see my face and know that he is the most special thing in my life. I have to believe that he is a miracle.