#raredisease | (Un)Diagnosed and still okay

Confession time…I forgot that Bridget is now a senior in high school. It was not until this week when I started seeing all the back-to-school posts from the parents of former peers of Bridget that it hit me:

How different our lives would be, if Bridget had not been born with a rare disease.

What if she had been born and then come home instead of the NICU?

Instead of spending her newborn and toddler years in therapies and medical appointments, she may have had playdates and if I had forgotten how torturous Abbey’s dance recital had been, maybe I would have enrolled Bridget in dance class.

She would have gone to kindergarten and made friends that would have lasted through this senior year. She may have joined sports or been the class president. Based on Bridget’s sense of humor, with PACS1, she definitely would be the class clown had she been born without it.

Bridget would have her driver’s license now; had she been born without PACS1. I would be worried about her staying out too late or driving in bad weather.

Bridget would be making homecoming plans, maybe getting one of those silly over the top invites by a boy my husband would not trust with his little girl. I would be at her friend’s house watching the girls get ready with too much make up and too little dress covering her ass. Since she is a fashionista with PACS1, I can only imagine what she would be wearing without it.

Bridget would have a job, a life outside of mine. She would be making her own money. Probably at a garden center, working for a florist or doing something creative. Instead of teaching her life skills or using the garden center as an out of the box OT session, it would be something she might one day make a career out of.

If Bridget was born without PACS1, she would be making college decisions. Or as I said to her sister years ago: college, the military or not my house after you graduate from high school. She would be figuring out the rest of her life, making plans for life without our constant supervision. I would be wondering if she was leaving the sandbar for the iceberg and hoping she chose a school closer than her sister did but far enough away that she could begin to form her own life.

If Bridget had been born without PACS1, my husband and I would be preparing for life as empty nesters. We would be having weekends away. Instead, we are in a holding pattern. While our peers are living their best lives with independent children, we are living our best life with a child who will always be a preschooler. We will never be empty nesters, and while thankful our friends understand that and never mind including Bridget, it would be nice if we could just pick up and go.

Like our friends we would be dealing with our elderly parents but not also dealing with a toddler. We would be helping our parents with their healthcare issues, while not also dealing with hers. We would not only be our parents’ healthcare proxies but also our adult child’s guardian and power of attorney.

We would be making our retirement plans but not having to consider how Bridget fits into those plans. From relocation and the disability services available but the medical implications of leaving the security of Children’s Hospital.

Without PACS1, we would be watching Bridget take senior photos. Instead, there are no school photos, since she left public school.

I don’t usually go down the road of what if…I love seeing my friend’s posts and usually I forget that their child is the same physical age of mine. When I am seeing the senior flashback photos, I do not participate, as I did with her sister. Although Bridget is technically a senior in high school, when you are in a special ed school they don’t really distinguish grades. Rather you are grouped by ability.

I wonder, am I doing a disservice to Bridget by not participating, now that I remember she would be a senior without PACS1? Am a horrible mom for some days wishing she was born typical and not just loving the child that she is?

No, and if you at home have that not-so-typical child have these thoughts too it is okay to wonder what our life would be without rare disease impacting it. To me, it’s like loving your typical teen even if they aren’t really loveable in those hormone driven moments. Where you wonder with your typical kid, why can’t they just be quiet!

I forgive myself for these what if (and sometimes what the everlasting fuck) moments. I don’t love Bridget in spite of PACS1 or because of PACS1.

I love Bridget for the child she is and if there are moments where I wonder what our life would be without PACS1, I also have times when I wonder what our life would have been like had David gotten his wish of having six children. I wonder what my life would be like had I left the sandbar at 18, instead of making a life on it. I wonder what my life would be like in a hundred different ways had I just made one other choice.

Wondering what life would be without PACS1 doesn’t hurt like I thought it would. Well, okay, it hurts but not as bad as imaging a life without Bridget.

Last year was one of the most difficult years of my life with Bridget. The diagnosis of catatonia came with an inpatient drug treatment, followed by almost 8 months of titrating drugs up and down, adding medications, weaning off medications and having to trust the medical professionals that they knew more than I did.

In Massachusetts we had a tragedy a few years ago where a mom murdered her three children and then attempted to kill herself. Her case is currently underway in our Courts and being played out nationally on the news and social media. I have been hesitant to “join the bandwagon” because her case is currently a criminal case, not a civil one.

I am not writing about her guilt or innocence. I am not writing about if she was criminally responsible or not due to mental illness.

I am writing because the some drugs Lindsay Clancy were on are the drugs that Bridget was treated with over the past 14 months. The drugs that had me pulling over on the side of the road, because Bridget was so out of control that she was ramming her head against the side window of the car.

The drugs that had her shouting she hated me, while also hugging me. The drugs that due to her medical condition, we did not know if it was the drugs or the condition of catatonia, combined with an intellectual disability, combined with being quasi-non-verbal, combined with autism and PACS1 and puberty emerging.

There were many instances during that time period, when brought to tears, I questioned what I was doing to my child. Maybe it would be easier to let her slide into catatonia and her own world rather than fighting to stay in mine.

The difference between Lindsay Clancy and Bridget are vast. Lindsay could verbalize how the drugs where effecting her, how they were making her feel and to advocate for herself. With Bridget, I had to go on behaviors. The tears for seemingly no reason. The balance issues. The up all night stimming versus the inability to wake her up because she was so snowed. The vacant stares versus the hitting her head on the floor.

The similarities between Lindsay Clancy and Bridget are also very minute. Both have a mental illness. Both were (are) being treated with selective serotonin reuptake inhibitors (SSRIS) and benzodiazepines (benzos). Both had strong family advocates, crying for help for their loved ones. Both had to trust their healthcare providers to stay the course, to trust that the doctors knew what they were were doing.

The devastating factor that is the biggest difference is I could trust Bridget’s neurologist because we had been under her care for 16 years. When she diagnosed Bridget with catatonia, she did not just transfer us to psychiatry, but took time out of her day to go to the appointment with me. When Bridget was hospitalized, this neurologist visited her in the hospital to make sure she was okay. When the effects of the drugs were more than we could handle, we had trust in her team because they knew her.

This is the heartbreaker, for me, about Lindsay Clancy. Her team did not know her, she did not know them so she did not trust in their treatment of her. Her team let her down, because they (per testimony) never consulted or spoke to one another. They did not review one another’s medical entries. In the world of electronic records, this is mind boggling. They had to trust what Lindsay was reporting to them, of course, but they also should have provided the extra care Bridget’s neurologist showed, but talking with the other treating providers. I honestly believe, if it was not for Bridget’s neurologist, her psychiatric team may not have trusted what I was telling them.

I know, in my heart of hearts, I would not have trusted the psychiatric team if I did not have trust in her neurologist.

There are those that look at this case as “doctor shopping” or not following through with the prescribed plan of care. I want to shout at everyone that until you live through what medication and mental illness does to a family, you need to listen to this case and to the entries in this woman’s diary. Lindsay was crying for help (in my opinion) and seeking care from anyone who would listen to her.

Just as I did, in the beginning of Bridget’s catatonia. I went to her pediatrician, I went to her gynecologist and to her school team. Not ever thinking that she was having a mental disease, I asked her pediatrician to if she could consult with Bridget’s neurologist, and thankfully there was no ego involved. Instead, the pediatrician but a call into neuro that day. When neuro called back and our pedi was in with another patient, she allowed herself to be interrupted to take the call. We had a team working together, not working as individuals.

I firmly believe, that Bridget’s care was successful because she has a rare disease and has been in multiple specialist’s care since birth.

Had she not? Had we not been entrenched with Boston Children’s Hospital for 17 years? Had I not had faith in her current team to consult with psychiatry? It is not blind faith, when Bridget needed spinal surgery, I got a second opinion at another facility. I have always questioned the therapists, the school system, the pharmacy and the doctors when it comes to Bridget’s care.

It is because we had a history with providers, that we were able to trust in the treatment.

Yes, there was tears, some days too much wine and whining on my part. Yes, there were times I questioned if I was making the right decisions for my child’s plan of care. When I had to trust in those who have always treated Bridget with compassion.

But I have 17 years experience in living this life. Lindsay Clancy and her family only had months. Yes, she is a nurse, but there is a difference between living with disease and treating others with it.

We were lucky. It took almost 12 months to get the drug combinations to bring Bridget back to our world.

My girl, with love, patience and yes medications, is almost back to the girl she was before catatonia entered our lives.

Any of us can Monday quarterback or second guess exactly what Lindsay Clancy was experiencing during the months preceding that horrific night. I will never know what was happening in Bridget’s brain as we were finding the right mix of prescriptions and doses. She, to this day, is unable to tell me how the drugs make her feel. If when she was trying to jump out of the car, she had suicidal idealizations or when she screamed she hated me, she really felt that way or the drugs were making her lash out at me.

I’m just grateful I had trust in Bridget’s doctors that allowed me to question what we were doing but provided me the answers I needed to not lose hope.

Unless you love someone with mental illness, or live with it, hate that Lindsay Clancy murdered her children.

And be thankful that you have never experienced whatever she did that led to tragedy.