A look back at surgery 

I recently stumbled upon a note in my phone I had completely forgotten I had written. Probably because it was 4 days after Emma’s craniosynostosis surgery and I was sleep deprived and a basket case. These are completely real and honest thoughts I had. I’m only sharing them because maybe someone else has had the same thoughts and felt alone. You’re not.😓❤️🙏

Today is..stressful. Emma had her Cranio surgery on Monday and we’ve been in the hospital all week. I’m beyond exhausted and stressed and overwhelmed. People tell me that Emma picked me as her mom because I can handle all of this. I’m only one person. I can only handle so much. I’m so stressed out all of the time. I love Emma more than anything in the world but sometimes I don’t think I’m as strong as I need to be. Why is this fair? Why does Emma have to go through all of this awful stuff. What 10 month old deserves this? I would give anything to trade places with my daughter. Literally anything. My heart explodes into a million pieces when she is in pain. I wish she didn’t ever have to experience any pain like this. 

To this day, I still feel responsible for Emma’s hydrocephalus. If it was the anti nausea medicine that caused it then it’s my fault for flying and my fault for taking the medicine. Why didn’t I just deal with the vertigo. Emma would have. She is much stronger than I am. I admire the hell out of my baby. There are grown adults, including myself that would never be able to go through what Emma has and turn out as amazing as she has. 

I have so much love for this baby it hurts sometimes. I cannot imagine my life without her and am so very grateful that I didn’t have to. I just wish there was some way to not have her experience anymore pain in her life. She doesn’t deserve that. Not that any baby does. She finally fell asleep around 8:45 after fussing for hours. Her drain keeps tugging on her skin and she can’t get comfortable. I want to cry every time I look at her. I swear, sometimes I don’t think I’m strong enough to be this baby’s mother. I had to leave the room and go into the bathroom to cry after she finally settled down. I may have gotten 10 hours of sleep in the last 4 days. I’m sleep deprived on top of all this. My husband can’t begin to understand what I’m going through right now or this entire time. I don’t blame him, most people couldn’t possibly understand. He didn’t have to carry her for all that time knowing there was something wrong with her. He didn’t feel her kicking or hiccuping or moving inside of my belly. 

I honestly don’t know how I could ever love another human as much as I love my daughter. That makes me nervous to have another baby. How could I possibly focus on making Emma the best person she can be if she has a little brother or sister I need to care for? Emma’s amazing but she still needs constant therapy and extra attention. I would feel guilty trying to raise another baby and give Emma everything she needs from me. 

That’s it for now. Emma is getting her drain out very early tomorrow morning then they will monitor it for a few hours before they discharge her. Her incision looks great and her swelling isn’t terrible. She’s the most beautiful, amazing soul I’ve ever met. I can’t wait to see what this surgery does for her progress and development. 

How did you handle your child going through and recovering from surgery? How do you have another child once you have one with special needs? How do you give them the best life without giving them all of you?

1 thought on “A look back at surgery ”

  1. This is beautifully written and extremely moving! None of us could ever possibly understand your journey but reading your thoughts helps those of us who love you, Ed, and Emma so much begin to share in the experience even more! Thank you for sharing with all of us! ❤️

    Liked by 1 person

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