Mariesa

Northern Virginia homeschool mom turned rare disease mom. Trying to embrace life with my kids and wonderful spouse through the feared reality ahead of us all

[Mariesa @MJRiesa]

@NatlParkService It’s the only proven method to get the newbie to the top.

[Mariesa @MJRiesa]

@ParrishLiz Characterizing metachromatic Leukodystrophy as a “childhood form of dementia” is pretty far off the mark. It’s an absolutely torturous disease that takes everything from kids - including their memories and their lives in a very short timespan. I’m so sorry for this familu.

[Mariesa @MJRiesa]

@AdamtrendHQ Fantastic, until I want what’s in box number 4…. Every box needs an access point.

[Mariesa @MJRiesa]

@MamaVal90 I’m with you. ☹️❤️

[Mariesa @MJRiesa]

There aren’t packages to my knowledge, just the promise that kids will be paired with a parent. You can pay for seats together if they exist, or negotiate at the gate if it isn’t possible.

We have flown a lot as a family of 6, and - to your point - we have ALWAYS managed to sit together without having to bother a passenger. We have had to bother many a gate agent, however. The only seat exchange we have ever attempted was to offer an adjacent passenger the first class upgrade we weren’t going to use.

[Mariesa @MJRiesa]

@AltamariJanet @thomasitsok @ick_real A missed opportunity

[Mariesa @MJRiesa]

We just had our 4th. I thought we were finished after three, but could not let go of the idea of one more. We feel complete now… but I have a young child with a terminal illness and I wonder if that feeling of completeness will change as our situation evolves. Babies are healing ❤️‍🩹

[Mariesa @MJRiesa]

Your two tweets seem to contradict each other. Is homeschooling living in a world that revolves around you or is it a life of isolation?

As a homeschool parent turned public school parent, I’d say it’s neither. Public school certainly keeps them busy, but I’ve yet to see many social or educational benefits that aren’t more accessible for homeschoolers

[Mariesa @MJRiesa]

I know its easy to say we shouldn’t dwell on regrets. The reality is, sometimes we learn from them, and sometimes other people benefit from our mistakes. Genetic testing would have saved our daughter’s life.

It feels so stupid in retrospect — the fact that we kind of knew comprehensive genetic testing for babies was out there, and never bothered to look into it.

It was new. Maybe it seemed overkill. Maybe we thought it would never happen to us. We’d never be the family with a sick kid.

It doesn’t seem overkill now. I’d give anything to be able to go back in time and read that genetic result 2 years earlier. She’d have been treated and could have looked forward to a normal life. Instead, we wonder if she will still be able to talk or eat on her birthday in 6 weeks.

I don’t share this so another someone will feel sorry for us, or so a friend will tell us not to blame ourselves. I share so someone else chooses to be more proactive than we were. It seems like a pretty reasonable newborn expense in retrospect, to check to see if there might be a fatal disease lurking.

MLD is one of hundreds of horrible diseases like this. The government screens for a few. Early screening saves lives all the time. Don’t wait for your government to add it to their expense list. Just pay for a screening. Save your money, skip the baby shower, put it on a registry…do whatever you have to do to pay for genetic testing.

#genetictesting
#raredisease #newbornscreening #loudounmoms #metachromaticleukodystrophy

[Mariesa @MJRiesa]

@sweatystartup We stayed at one with a fire pit and asked if they had roasting sticks stored somewhere.

How dare we? There is a store down the road, you ungrateful guests.

[Mariesa @MJRiesa]

@sara_learner @iratusmater They were probably over the moon! Am I right?

[Mariesa @MJRiesa]

@TheACMG We feel so strongly about proactive genetic testing after our daughter’s treatment window was missed.

[Mariesa @MJRiesa]

Rosie is facing what no little 2-year-old girl should have to face. While her peers are scootering and running and doing acrobatics all over the neighborhood, she is trying to hang on to the few weeks of supported walking she has left.

https://t.co/wrWtoOpJbW

Before her diagnosis and well before she lost the ability to walk, we saw a woman in a wheelchair one day. Rosie asked what it was. We explained to her that she had a special chair to help her because her legs didn’t work very well.

“Like me?” Was her reply.

Hearing her little cartoon-like toddler voice say those words was heartbreaking. Rosie felt the stress and pain from her disease long before we ever understood that something was very wrong.

Metachromatic Leukodystrophy will take every milestone she has achieved from her this year. We are switching her equipment often to adapt to her changing needs. So far it has kept her upbeat and given her things to look forward to as her body stops working.

Please consider donating to her medical fund so that we can keep her comfortable and included. This week’s change will be a tree swing near the sidewalk that allows her to play and feel a part of the neighborhood gang while all the kids scooter and bike down the street.

https://t.co/wrWtoOpJbW

#mldawareness #newbornscreening #metachromaticleukodystrophy #raredisease

[Mariesa @MJRiesa]

@_aboihasnoname What could go wrong?

[Mariesa @MJRiesa]

@BreannaMorello I found a scorpion in a hotel room once like 25 years ago and I don’t have any sleep memory more miserable than that night. Don’t get under the covers… don’t turn off the lights… DON’T move. AT. ALL.

[Mariesa @MJRiesa]

@MichaelFKane This is a very good place to start wrapping your head around what’s out there. It allows you to search curriculum with filters. Christian/not religious. Political leaning, methodology etc. https://t.co/hPnABJjT5M

[Mariesa @MJRiesa]

@iratusmater 😅😅😅 I feel like I could make millions with a device that takes it off of wood floors.

[Mariesa @MJRiesa]

Rosie is facing what no little 2-year-old girl should have to face. While her peers are scootering and running and doing acrobatics all over the neighborhood, she is trying to hang on to the few weeks of supported walking she has left.

https://t.co/wrWtoOpJbW

Before her diagnosis and well before she lost the ability to walk, we saw a woman in a wheelchair one day. Rosie asked what it was. We explained to her that she had a special chair to help her because her legs didn’t work very well.

“Like me?” Was her reply.

Hearing her little cartoon-like toddler voice say those words was heartbreaking. Rosie felt the stress and pain from her disease long before we ever understood that something was very wrong.

Metachromatic Leukodystrophy will take every milestone she has achieved from her this year. We are switching her equipment often to adapt to her changing needs. So far it has kept her upbeat and given her things to look forward to as her body stops working.

Please consider donating to her medical fund so that we can keep her comfortable and included. This week’s change will be a tree swing near the sidewalk that allows her to play and feel a part of the neighborhood gang while all the kids scooter and bike down the street.

https://t.co/wrWtoOpJbW

#mldawareness #newbornscreening #metachromaticleukodystrophy #raredisease

[Mariesa @MJRiesa]

@iam_preethi H&Ms Mama line always has a few good nursing staples, but I agree, the lack of options is ridiculous.

[Mariesa @MJRiesa]

My walking, talking, little girl is losing her abilities one by one to an unimaginably cruel disease called MLD. We are hanging on to every moment we have left with her before she is left paralyzed and unable to speak.

Please consider sharing and donating to her medical fund.

It’s more important than ever for us to focus our energy on her and our other children now instead of worrying about these new financial setbacks at every turn. https://t.co/1X4VnPCUbj

Metachromatic leukodystrophy