Monthly Archives: April 2023

A glimpse of the future

Last week was April vacation week for Bridget. In our family, just because the kids are on vacation that does not mean the parents get a week off to go to Disney. With on. child in college and one child that is just as expensive, vacation week looks every other week, except the kids stay home and watch too much TV and eat way too much junk food!

Our live-in nanny is currently living her best college life, as she should be! Since unlike most 14-year olds Bridget cannot stay home unattended watching videos on YouTube and eating junk food. Since I cannot take the week off (my paid time of is saved for her doctors appointments), I got a glimpse of what our life may be like in 8 years when she is no longer a cared for by the school system.

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It’s been a while, let’s share a glass

I took a little hiatus from writing this blog. I was second-guessing myself, wondering if Bridget could read the words I write, the exposure of living with a child with a disability (the good, the bad and some days the downright ugly tears), would she be hurt? Would she be embarrassed? Would it negatively affect her in anyway?

When her sister was a teen, she asked to approve anything I wrote here or on social media. To this day, I respect her wishes.

I had a moment of personal ethics/crisis/I’m not sure what when it came to sharing about Bridget. Then a very good friend said to me…

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For the Love of Music

I have never been into plays or musicals. I love music. I always have it playing in the background. I try to sing to it, until Bridget tells me to stop because I am “not good”.

Bridget has always loved music. On her iPad she will zoom past the dialogue and stop like a dime when the music and singing starts. She loves it all: Grease, any Disney Movie and the Barbie movies. If there is a music, Bridget is having a good time.

Fast forward through the disaster that was Covid-related and Bridget has found a new hobby.

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Small Steps to Independence

There are days and moments when I know that as a family we impede Bridget’s independence. It’s not malicious, it is just easier. All parents do this to some extent. We cut their food for much longer than we need to, we pick them up and carry them when we are in a rush, we let them have cereal for dinner because as parents we are just done for the day.

There are so many ways that I know as parents we take the easy way out. We are not wrong, we are surviving the day. Because it is easier and I am on a schedule to get out the door in the morning, I typically dress Bridget. Can she do it on her own? Sometimes on the weekends. When there is no rush and we (I) don’t care that her outfit is a mismatch. Or not only do we have time to inspect and notice that not only is her underwear on backwards and kind of sideways, we have time to realign things to make the van on time.

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I admit it

Bridget has come so far, broken so many “barriers” since that one doctor told us she would never (insert milestone here).

Yet her milestones, every freaking one has come with a price.

Hours of feeding therapy to learn how to eat, to avoid a g-tube.

Hours of physical therapy to learn how to roll over, to walk, to jump and to navigate stairs.

Hours occupational therapy to deal with sensory issues, to learn how to write, to learn how to use an utensil and put on clothes

Hours of speech therapy to learn how to sign and then finally say Abbey. To need an interpreter all through public school when a new teacher would enter her life and her typical peers would have to let them know what Bridget was trying to say.

I hate the term typical peers.

Hours of ABA that had to be modified due to her stubbornness but without it she would not have ever been potty trained.

Even with being potty trained, she still pees and shits the bed.

I admit it.

I want that perfect child.

I don’t want to wake up in the morning and not only have to change a diaper but have to change the bedding.

I don’t want to have to deal with temper tantrums because she doesn’t understand she cannot eat the entire container of Oreos.

I don’t want my child in a special education school an hour away where I know no one and have no idea who her friends are. While I know she’s where she needs to be, I hate that I had to give up the dream of her graduating with her class or being a part of our village.

I don’t want to have 15 specialists, I want one pediatrician that we got once a year for the school form.

I don’t want Bridget to have to have 24/7 supervision, I want her to go to college, get married and have a family.

I don’t want her in a pre-training/vocational program. I want her to get a job just like her sister did at 14.

I don’t want an IEP or special education. I want education and field trips I don’t have to be a chaperone on.

I don’t want to have to base every freaking decision on what she can/cannot handle or have to modify a vacation. I want to be able to leave her home alone and have a date night with my husband.

I admit that while I will always see the silver lining, the clouds freaking hurt.

Bridget is so very happy. If she could read I probably wouldn’t write this (and if her sister reads it she will be rightfully pissed at me). Though if she could read I probably would not have to write this or would even think these thoughts.

But Bridget cannot read.

She cannot do math.

She will never live alone.

She will have an incredible life.

I just some days wish it was the typical, perfect life I thought we were promised when I saw that positive test. I love my child, I just wish she wasn’t a forever a 4-year old.

I admit it, I love my child but somedays I hate this life.

National Siblings Day

There are so many made-up holidays (Galintines day) or Hallmark holidays (Mother’s Day), every day there seems to be another FaceBook holiday (my personal favorites are National Wine and National Margarita day). My FaceBook feed has been full of Siblings Day posts.

Siblings day, apparently is a thing. Since no surprise presents have showed up for Bridget today, I think her sister must be as clueless as I am about the social media pressure of Siblings Day.

Then I realized, in the life of rare disease and having a disabled sibling, every day is sibling day. If you are lucky.

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Suddenly I have different standards

I have always been a proponent of inclusion. Until COVID hit and they shut down the school system. When Bridget went back to school there was no longer a small crevice between her and her peers but a freaking canyon. Suddenly (it seemed) where Bridget was a peer, (with some differences) she was now the class pet.

When Bridget was in the public school I was very cognizant that she had to conform. She couldn’t wear “younger” clothes. I would not allow Bridget to wear anything that would make her a target. I would not let her wear a shirt or a dress with a preschool character on it. There are kind, accepting children. And then there are jerks.

I never wanted Bridget to be a target of bullies.

Even if she is unaware of the stares, it hurts my heart when I see another parent or child look at Bridget with judgement. At Halloween when she dressed up as a Disney Junior character, or watching a Disney Now program at a restaurant on my phone (something her sister NEVER would have been allowed to do) or her obsession with Princess Sophia when her peers are into teenage dramas.

The decision to move her to a school that was focused on special education, was scary yet freeing.

I no longer had to police what Bridget wore or spoke about. Because these are children on her same wavelength

It was freeing.

I can hold Bridget to a standard, yet also let her be who she wants to be.

At “professional day” at school she was Doc McStuffins. The most annoying Disney character since Calliou.

But my girl was overjoyed. Came home from school, took this photo out of her backpack and told me all about her day.

I continue to have high standards for Bridget. She can be disabled but not an asshole. She can be disabled but someday hold a job. She can be disabled but be the best she can be.

And I have to learn to let her win (not let it bother me so much) when it comes to how she dresses and what shows she watches.