Dear Medical Professional / Healthcare worker,

Hi

It’s me.

Bridget’s mom

The person who has brought my child to you and/or your clinic every 6 to 12 months for the past 14 years.

I know you see A LOT of patients and their caregivers. We also see A LOT of providers. Bridget sees 15 doctors, 4 therapists, 2 special educators and 4 educational support personnel. She sees countless laboratory techs, nurses and physician assistants. Let’s not even contemplate how many ER staff Bridget has seen in her 14 years, but I am betting it is more than the majority of medical professionals has seen for their own personal care.

Yet somehow, we know your name. Okay, we use a cheatsheet. Why don’t you? Why do you not know one thing about our child’s life or our name?

Here is my constructive advice, from a caregiver to a medical professional:

1. Greet Bridget. Yes, our child might be or may have been non-verbal, but that does not mean they cannot hear and understand. Even if the patient seems like they are unable to respond, greet them first. Say hello. Address them by name.
2. Learn the caregivers names. Come into the room and don’t call me “mom”. I’m not your mom (one caveat here, unless I’m in the NICU postpartum and you’re worried I have failure to bond). Call me Mrs. Ames (or if Bridget and I have seen you for a decade, know to call me Kerri)
3. Take notes about our personal life. Bridget was so happy to go to Alaska. She told everyone. Only one doctor took notes and when we returned asked Bridget about Alaska. For a child who is not a “reporter” but a “responder” by noting the information from the previous visit, this doctor was able to make a connection with Bridget
4. Remind us what you are testing for, while we might seem like we know everything most of the time it is because we do not want to look inept. So tell us, oh we are testing her urine for a UTI because of XYZ.
5. Call us back. Out of Bridget’s 15 doctors, only her neurologist calls me directly if I send a message through the portal. Otherwise I get a tech who is just going to relay the information to the doctor. It becomes a game of telephone. And you all remember how that goes, it starts with Mary went to the market and by the time it gets to the powers that be, it is Mary was a virgin who gave birth to a savior.
6. Take our parenting seriously. We know our child better than you do, validate that. Especially in rare disease but in all cases never discount our institutional knowledge of our child. If we say X is wrong, believe us and work with us to find an answer to Y.
7. Understand that we are a team. The parent is the coach. In Bridget’s case she has 15 doctors that do not speak to one another. I’ve literally be told when you see GI mention “this” or when the next time Bridget is having labs let me know so I can add “this” test. The parent is the complex care manager, give us the tools and the back up. Write your notes in a way that we can say to the next doctor, oh Endocrine is concerned about bone density and long-term use of her GERD med, they want her Vit-D tested.
8. Give us the tools to be successful, but give us the respect that we are in the trenches and you see our child for 20 minutes every few months.
9. Do not just treat the patient in PT/SPT/OT, but let us observe and give us the tools to keep doing the therapies at home. A 45-minute / once a week session will not “cure” our children. Yet typically we are in the waiting room while treatment is taking place. Then we are given “homework” in a busy waiting room. Here is a secret, if we knew how to do PT/OT/SPT we wouldn’t need to travel to you. So give us the education to carry on what you are attempting to do with our child.
10. Don’t give us platitudes, but ask us how we are doing. No one seems to check in with the caregiver to see how they are coping with this unexpected life.

Last, but not least, thank you. I am sure that being a pediatric specialist isn’t an easy job. Neither is being a caregiver of complex child. Together we can change their future.

So let’s work together to make that happen.

Every parent loves their child, well most days! A parent of a child with special needs, for some reason, always seems to have to clarify that before they talk about how difficult this life is to navigate.

Not every moment is a freak show. Not every moment is a unicorn farting rainbow sparkles. Okay, rainbow sparkles is probably the 5th layer of hell, but you get my point. It doesn’t matter if you are a parent dealing with typical teenage angst or a parent dealing with a 14-year old that needs her butt wiped.

There are no perfect days in parenting.

And a lot was left out of that freaking what to expect book. And I’m not just referencing the fine print of there not being a no-return policy. (FYI if it’s in there I totally missed it)

Having Abbey, I think, balances my freak out moments with Bridget. For example, yes Bridget will never drive. However Abbey almost killed me multiple times before she got her license and I set her free to wreck havoc on the streets of the Cape. I had failure to bond with Abbey. Again, she tried to kill me in child birth, so it wasn’t really failure to bond rather it was why hold someone (even if they’re only 7 pounds) who gave you 46 hours of hard labor? With Bridget there wasn’t failure to bond, there was holy crap now my child might die and asking to take her place.

There is balance between the girls. Where Abbey is difficult, Bridget is easy. Where Bridget is ultra-dependent it makes me appreciate how independent Abby is.

Yet, as the girls get older it is becoming clear that the balance is shifting. Abbey is off at college, living her best life (as she should be!). Bridget is 14-years old and I am still cleaning sheets in the morning.

Abbey has one doctor, that she grudgingly goes for a yearly physical. Bridget is up to 15 doctors and post-Covid all those appointments are back on either a 6 or 12m rotation. I thought this life with Bridget would get easier as time passed, like her sister. Abbey will always need her mom, but in a different way that Bridget needs her mom/caretaker.

The balance remains, yet walking the beam gets trickier to make sure both girls get what they need from me. Making sure the easy moments outweigh the freak show moments.

For both girls.

I think I speak for every teacher and parent when it comes to standardized testing. Standardized testing (in our state MCAS) is meaningless, it does not provide any worthwhile information (since it is reported 6 plus months after the student actually took the test). It is a barrier to high school graduation and is not a true depiction of a teacher’s ability to educate or a students ability to learn.

In Bridget’s case it is the epitome of ridiculousness. She cannot read or add, yet the State expects her to take either MCAS or MCAS-Alt. I joked for years that due to the complexity and time that is involved with MCAS-Alt that just let Bridget sit in a room for 3 hours playing on the computer. Hey with the laws of probability she might just pass the multiple choice!

When Bridget transitioned from the traditional public school to a special-ed only school there was a lot for us, as a family to adapt to. And for the school to adapt to my style of parenting, aka sarcastic humor. I questioned them about the MCAS-Alt. I would rather Bridget’s team spend the time teaching her vocational and real-life skills rather than worry about what the State Department of Education deemed worthy. I have plenty of sleepless nights, but I never lost sleep over how the State judged Bridget’s academics.

Until last week, when I receive this in the mail.

Bridget’s school team rocked the MCAS-Alt. They showed the State what I have always known.

No one, not myself and not the State, can ever tell Bridget that she cannot do something. She does it in her own way, but she proves her worth.

It shouldn’t matter that she got this certificate from the State. But yet it mattered to me. That State recognizes how hard her team at school works to make Bridget the best she can be. That I can say to her home district we miss you, we wish she was still in her hometown public school.

But this is where Bridget belongs.

Because she and her team at school just rocked the MCAS-Alt and proved it.

When Abbey went to college this fall it mattered. Not that I’ve ever been that sentimental mother that worried about milestones. I’ve always been the mom that understood they are supposed to go to kindergarten, high school, get their license and go to college or live somewhere that is not my house.

I never had “that” moment where I was upset because it was just one more milestone that Bridget would not achieve. It didn’t matter to me that Bridget would never go to college, it worried me on how she would handle Abbey not being home.

I am incredibly lucky, my girls are in love with one another and bond over ways I never would imagine. Abbey has never once been jealous over the extra care and attention Bridget takes. I worried on how their bond would survive the distance.

That was proven true the first time Abbey FaceTimed home.

Bridget lost her shit. There were tantrums, there was crying, there was head banging, there was a storming to her room while she kicked the door. Every time Abbey called/FaceTimed we would try to get Bridget to just say hello.

I think it broke Abbey’s heart (though she would never tell me), I know it did mine, on how upset Bridget would become when she heard Abbey’s voice.

Until last week.

Last week, I don’t know what was in her water, but Bridget took the phone and visited with Abbey. Abbey took her on a tour of her dorm, the food court (no surprise, Bridget wanted to know where the Oreos were kept), “met” Abbey’s friends and they talked for an hour.

Tonight Bridget realized she could FaceTime on her iPad. She gave Abbey a tour of the house (in case she forgot where the kitchen was). Bridget TOLD Abbey about her day, about her friends at school and how it rained at home but she saw snow on the way home.

She told Abbey she would call her back tomorrow because she wanted to watch her movie.

Tonight my girls were back together having dinner together.

College distance, life distance has proven to have no impact on their bond.

It just took Bridget 6 months to figure it out.

Words have such power and meaning.

Words, and how they are spoken, matter.

You can love pizza or love your children.

You can want a vacation or want a safe place to live.

You can hate broccoli or hate that someone you love has cancer.

You can say that you are friendly or that you are a friend.

You can say that taxes are stupid or that a person is stupid.

You can say someone is a Masshole or that they are an asshole.

You can say you don’t mean anything when you use the word retard or you can know that saying someone is retarded is not only insulting but hurtful.

There are an estimated 171,146 words in the English language according to Google. Of those words, I would guess that there are many insults you can use when describing someone’s behavior.

Let’s make retarded not one of them.