Tag Archives: Catatonia

I’ll tell you a secret…

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.

Keeping Score

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One of the most difficult things I am learning in this time of Bridget’s life is discerning what is behavioral versus what aspects of this newest disease is a mental health issue. Looking back (because it is always easier to see what I did wrong than to predict future mistakes), Catatonia began infiltrating our lives last summer.

As with all things Bridget-itis, the small things I either missed or decided were not important or they were becoming a part of her quirky and cute nature. What I thought was behaviors over time became the tools Catatonia used to try to keep my girl in her head and take her out of our world.

Bridget started refusing to leave the house. Going to the grocery store (one of her favorite places) became a negotiation if there wasn’t someone to stay in the car with her. Thinking it was behavioral, I made her push through when there was no other option. I didn’t realize she was having anxiety, and it was mentally painful for her to walk through those doors. Score 1 to Catatonia.

Bridget started talking only to me at home. I thought (at first) it was funny that she would “hide” her face from her dad and whisper to me the answer to whatever he was asking. Instead of being a new behavior, she was having mental anxiety that led to select mutism. Score 2 to Catatonia.

Bridget, while camping, refused to come to the campfire. Spent most of her time not only in the camper, but in her bunk. Bad mom moment, I kind of enjoyed the peace and quiet of camping, reading my book by the fire not having to listen to freaking Doc McStuffins on repeat. Instead, Bridget was showing the first signs of depression. Score 3 to Catatonia.

I asked the Doctor about all of these new diagnoses. If developmentally, Bridget’s brain is 4 years old, what the freak does she have to be depressed or anxious about? Okay, honestly there was a different “f” word in there.

Instead of reprimanding my use of adult language (perks of talking to her psychologist, they’re probably used to much worse), he gently explained that while Bridget’s mind might be 4 years-old, her body is not. Not only is her brain continuing to adapt and fight PACS1, but it is also having to deal with all the other hormonal, body and insert your teenage angst issue here concerns. Since her brain does not know how to deal with all that onslaught, it retreated into a state of catatonia.

Taking a minute here to remind all of you that I am not a doctor and may have misunderstood or misinterpreted all the information the Doctors have thrown at us over the past 4 months. If you have any of these issues or concerns, don’t trust me. Seek medical advice from a medical professional.

Carrying on after that short PSA. The Doctor tried to explain to me that with catatonia, depression, anxiety, select mutism and PACS1 (plus every other diagnosis Bridget has) what I am / have been afraid were behaviors I needed to help her correct, where actual mental health issues that we need to treat.

I asked how to I make sure that I don’t inadvertently create a behavior during this time?

I totally stumped the medical team with that one!

Here is the dilemma, the medical team is treating Bridget the patient. They are treating all the symptoms associated with her new diseases. They are also trying to be caring and cognizant of how her illnesses now affect our lives. (FYI getting up at 6am every day to give her a med SUCKS in JC CAPS, especially on the weekends). Yet they never thought of what behaviors we might create while treating her medical issues.

For example, what if I let Bridget not participate in grocery shopping now, while she is in crisis. What happens when she is no longer in crisis but has a learned behavior of staying in the car with dad? I guess that is okay, if he is home. But what if he is not and I have to run to the pharmacy?

What happens if we isolate ourselves now, to protect her from all her illnesses but that leads to us never leaving the house? (Self-serving PSA–if I am stuck in this house for more than 3 days, not allowed to leave, send Pinot Grigio).

Thankfully, this new cohort of Doctors listen and care. The advice is that if a behavior is not impacting Bridget’s life (like her increased stimming) then it is not a problem. For me not to sweat the small stuff (they are obviously new to the team). The behaviors that do impact her life (not leaving the house) is something we need to focus on. First with medication, then when she is no longer in this crisis “flight” mode, with therapy and baby steps.

And we have begun seeing small wins. Last weekend, Bridget walked to the beach. Score 1 to Bridget.

Today she got off the van very upset because her favorite teacher was not in school today. She verbalized it, and let me hold her until the tears were dry. Score 2 to Bridget

Keeping score, right now catatonia is up 3-2.

I know with time Bridget is going to kick catatonia’s ass. I am just going to have to be vigilant that once she does, there is not another behavior she has to overcome.

If I was a betting person, I would bet on my girl. She has never let me down before.