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Before I became a mom, I had a certain expectation of what motherhood would be like. We would have a healthy baby, she would have so much in common with Lance, my husband, and I. She would be an avid reader, unable to put a book down. She would be well-spoken, and involved in theater and maybe even debate club. She would be musical, marching in the band or playing in the orchestra. She would have a regular spot on the honor roll.

When Anna was born, she was healthy. The fact that she scored 9 on the Apgar scale was a point of pride. Then, after a few days, our world slowly started to turn upside down.

When she was diagnosed with Maple Syrup Urine Disease at eight days old, a whole new definition of motherhood was thrust upon me. I had a very sick baby, with a disease with a weird name about which I knew very little, and who was potentially brain damaged. I was introduced to a world that I never knew existed.

I never knew what leucine, isoleucine, and valine were, or how much my daughter would be allowed to have within a day.

I never thought I’d be in an emergency room watching a doctor and a group of med students smell my daughter’s diaper.

I never knew how terrifying a simple stomach bug could be.

I never thought I’d have to use my entire body weight to hold down a screaming child so the nurse can insert an IV that will save her life.

I expected to use our blender to occasionally make margaritas. Not to blend a foul smelling medical formula at least once a day, every single day, for almost 13 years.

I never expected to burn out 3 blenders during those almost 13 years.

I never thought I’d have to poke my daughter’s heel/toe/finger to bleed it out on filter paper, or check urine samples to see how cloudy they are when mixed with DNPH chemicals.

I never expected to have to explain my daughter’s disorder to everyone.

I never thought I’d have to patiently re-explain when someone would say “she can’t eat meat… but she can eat chicken, right?”

I never thought I’d throw my “what to expect’ book against the wall because she was not meeting developmental milestones like the experts “expected”

I never thought I’d know what an IEP is.

I never expected to be cheering for her as she competed in the Special Olympics.

My version of motherhood never included all of these challenges. This was not what I signed up for. Yet, despite all of these challenges I’ve faced as a mom, I wouldn’t trade one of them. I will face all of those, plus whatever else MUD throws at me, because that is what it means to be Anna’s mom.

And that is a blessing I thank God for every day.