I held on for too long and all it did was hurt my daughter. My little girl was born with multiple congenital birth defects that shaped every part of her life. With medically complex kids you fix one problem and somehow create two more. That was our reality from the moment she arrived.

She lived for 11 years, but if I am being painfully honest it was probably 9 years too long. Most of her life was spent inside hospitals. Months at a time. She would come home for a week or two and then we would end up right back in the same room with the same monitors and the same nurses. I do not think she ever spent more than two consecutive months outside of a hospital until she finally went on palliative care.

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She was more comfortable there than anywhere else and that breaks my heart. She became the warrior kid. That was her entire identity. Making cards for her nurses. Decorating her medical equipment. Trying to be Tough with a capital T because that was all she had. She never went to school in any meaningful way. Never played sports or instruments. Never had real friends. Never had the health or energy to explore normal childhood hobbies. Her whole life was surgeries and shots and tubes and machines. I look back now and feel like I gave her a life that was so small and so unfair.

There was not a single intervention I was unwilling to put her through if I thought it would buy more time. She was the happiest and most accepting child I have ever known, but during the last six months I could see her spirit changing. She was tired. She told me she wanted to stop. She asked me over and over if she could be done. I refused to listen. I pushed and pushed until she went quiet and agreed to whatever I wanted because she wanted to make me happy.

She knew she was done. I refused to accept it. And because of that she died agitated and upset. I think she was scared to let go because she knew what it would do to me. I was not strong enough to let her go peacefully. I held on out of fear and out of selfish love. I am so sorry. I will never stop being sorry.

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