I am the expert on my child.

I am the one and only person in the universe that knows the five different cry’s that he has. I am the one and only person in the universe that knows his facial expressions. I can tell by his body language if he is hurting or happy. I can see from the color of his skin and the tips of his fingers if he is in need of a blood transfusion or see how anemic he is or is not. I can tell by the way he breathes and the sounds he makes when he inhales and exhales if he needs his breathing machine. I can watch his tummy rise and fall with each breathe he takes. I can put my ear to his chest or back and listen for fluid in his lungs. The crackling of his lungs are so specific. I can hear them. I can tell by the retraction in his chest if he is struggling to breathe. I can tell if he is going to need to be hospitalized or if it is just an extra liter of dialysis he will need pulled off.

I am an expert on my child.

When we received the prenatal diagnosis, I became a scholar at his diagnosis. I researched and studied for hours and hours and days on end. When doctors informed us that there was “nothing they can do”, I ..the mother… presented doctors with interventions and solutions. I was the one that showed doctors that there really is hope for my son.

I am the expert on my child.

I am THE expert on my child.

When doctor’s check on my son during our weekly visit, it is me who they ask how he is doing. It is me who they ask if there is anything different… if there is anything wrong or good with him… if I have any concerns about anything or if I think he is ready to move up or back with his feedings or meds. I am the one they ask. I am the one that says he needs this or he needs that.

I am the expert on my son.

I am the one who tells our therapist what I think we need to work on. I am the one that works with him throughout the week one his exercises and activities. I am the one that can see he is regressing in this or he is excelling at that. I am the one that says we need to slow down or we need to push him harder. We can’t relax with him. He needs to be pushed to keep fighting. But he also needs to slow down in other ways to get rest or gain that confidence. I know the difference. I know his limits.

I am the expert on my son!!I know my son is going to survive. My son is a fighter. My son is strong and stubborn. He loves life with every ounce of joy he has in him. He knows all about LOVE and HOPE; FAITH and FIGHT!! He knows he has his family there with him and for him at all times. He knows he has all of us to go to when he needs something or wants something. And he knows he has ME to do the talking and the advocating for what is in his best interest. I won’t let anyone give up on him. Giving up is not a possibility when it comes to our son. I am in charge of my son.

I am his expert.