Shh…I want to tell all the special parents out there a secret:

It is okay to feel guilty.

It is okay to not always love this life we lead.

It is okay to wish your child was typical.

I have this friend, Jenn. Jenn is usually right. She has been since high school. A few months ago, Jenn said “Kerri it is okay to resent this life you are living.”

Typical me, I argued that I don’t have the right to ever be upset with Bridget or this life we lead. I chose this life. I chose to save Bridget in the NICU when we lost her, then multiple admissions that first year of her life and almost every year since.

I am the one who has subjected her to procedures and testing, both invasive and non-invasive. Trying to find a diagnosis, a cure, a treatment plan.

Not knowing at the time, how much more I would be subjecting Bridget to in her fight against PACS1.

This child has had more MRIs, EEGs, lab work and testing than any other person I have ever met. She has triumphed in therapies from learning to eat, to learning how to walk up the stairs. She has conquered everything PACS1 has thrown at her.

How dare I, for one moment, even brief, resent this life she has fought so hard to live?

Jenn said: Because you have fought alongside her every step of the way. That is why you are allowed to say fuck this, this is hard, this is unfair. Because you think it and fight anyway.

This, my readers, is true friendship. When your friend cries alongside of you. When your friend fights alongside of you. And more importantly, when your friend calls you on your bullshit. When she lets you have the pity party, but tells you when it is time to stop feeling sorry for yourself and start admiring how far you’ve come in 16-years.

Yes. I feel guilty all the time. I feel sad. I feel some days that I punishing Bridget not helping her.

I think that’s normal. As long as those feelings are balanced with: I’ve got this, I will fight for her. I will never give up

So, to you, my fellow warrior parent…listen to Jenn. It is okay to feel everything you are feeling. It does not diminish your love for your child. If anything, it proves that a parent’s love is stronger than whatever disease they are fighting.

Because we love these children despite their difficulties, not because of them.

So, feel whatever you are feeling. Lean on your friends and listen to them.

As Jenn said….it makes this life so much easier.