Sorry, that amputation we gave you wasn't needed after all

Will was born and for the first two weeks of his life, except for some eating issues, he was a very easy baby. Then as we approached two weeks he started crying all the time. He would cry for about six hours in a row. He would wake up to eat and it would take an hour and a half for him to eat because his reflux was so awful that he would suck, scream, suck, scream. Then finally he would fall asleep. I'd lay him down and he'd wake up and scream some more. We used to take shifts. I would stay up and then a few hours later when I was in tears Mike would come relieve me and then we would switch. At some point Will would finally fall asleep and sleep a good two or three hours. Then he would stay up the rest of the day, only sleeping on our chest.

His eating was such an issue and I didn't know at the time that it was reflux because he rarely spit up, that I decided to go to a lactation specialist. She asked me some questions about what I was taking for my seizures and then she pulled out this 100 lb book that was like the bible of all medications in the world written by a pharmacist. She then continued to say that I was poisoning Will by breastfeeding with that particular medicine and that I should no longer breastfeed.

As if I wasn't depressed enough at that point. I left in tears freaking out that I was harming my baby and wondering why my neurologist didn't tell me this particular medicine was safer for pregnancy but not for breastfeeding.

We mutually decided (me, Mike, and the neurologist) to take me off of the medicine completely. It was a 6 week long process. I was told to gradually wean Will from breastfeeding and introduce the bottle once a day until he was completely off of the breast and then after six weeks I would introduce the breast again.

Will would wake up, take an hour and a half to eat, scream, cry, yada yada, and then when he would finally fall asleep I would go back upstairs and pump so my milk wouldn't dry up during those six weeks. I was told not to drive and Mike was supposed to basically babysit me to make sure I didn't have a seizure while holding Will.

At some point during all this a very wise OB/GYN told me that I was a good mom that cared about my baby and I would still be a good mom if I didn't breastfeed. He said that it would be virtually impossible to reintroduce the breast and that taking care of myself would be of the most benefit to Will.

That experience was a nightmare for me.

This week I can't help but be reminded of this experience, and many other experiences (like the time I starved myself so I could save my food money to pay for my medicine). My EEG came back and surprise! I don't have seizures.

I am having an identity crisis. I have made peace with seizures as a trial in my life. Once a boyfriend told me that if I just had enough faith God would cure me of my seizures. That was really offensive to me. I felt like God had given me seizures to try me and help me grow. Having seizures played such a big role in my life that I felt it defined me in some ways. Now, in one day, that changed.

I don't have seizures anymore. It has been at least six years since there has been any seizure activity and I have no idea how much longer before that. I am having a hard time making sense of why it took so long for a doctor to say I don't have them anymore. I can't help but think so much of what I went through was a waste.

I feel like my life isn't going to change. What happened has happened. There is no changing that. I recognize that seizures didn't define me but the experiences I had did. I realize I am a stronger, more empathetic to people with trials.

And yet, I wish there was some acknowledgement of the "stuff" I've been through up to this point. Every one reports with smiles, "Your EEG is normal!" I feel relieved but I also feel a desire to hear, "I'm sorry it took us so long to diagnose you correctly. I'm sorry for what you've been through." I feel confused that I am not embracing this new diagnosis. I feel like a part of me that I had identified with for 25 years is missing. I know it sounds weird and I certainly don't WANT to have seizures.

What I do know is that this specific trial was made for me. I know my Heavenly Father loves me and is aware of the suffering I have gone through. I know I am still "me." I feel gratitude to my Heavenly Father for my wonderful life. I feel an acceptance and peace that increases each day. I'm grateful that God doesn't make mistakes in our lives and I'm grateful to have a chance to grow each day.