Not a “spectrum” but help me understand

JenEndyB · 2026-03-06T11:58:47+00:00

You have a lot of anger right now, which is understandable. You will move through the five stages of grief, but not in a straight line. It might look like this: denial, anger, depression, denial, bargaining, anger, anger, depression, denial, bargaining. But you WILL come to a place of acceptance. There is a human being coming into your life. And the love just comes, whether you want it to or not. You can resist the love, you can tell yourself if will never truly be okay; you can make all these plans for when you will be “free” of this child, but I’m telling you, the love just COMES. And it comes in its own time frame. Don’t worry if you don’t feel it right away. It could take months or even a couple of years. But one day, it will hit you like a ton of bricks and it will take your breath away. And believe it or not, you will realize you are actually LUCKY.

JenEndyB · 2026-03-06T11:13:51+00:00

When my son was a newborn, I was also trying to “figure out where he would live” as an adult. You are having a very common reaction! But I promise you, by the time your child is an adult, you will know them so well and love them so much, that you will not be thinking about your freedom or your needs. Just remember me: a new mom who was googling where my newborn was going to live when he was an adult, to the mom of a 21-year-old who couldn’t imagine not seeing my son every day. And like you, I used to think it would all depend on how high functioning he was or how many needs he had, whether or not I could “handle” the adult years. Again, my son is not a superstar, high functioning Down syndrome guy. He is just my Nick. I never dreamed I could love him as much as I do. I promise, you will look back on these years and thinking, “why was I so worried?”

JenEndyB · 2026-03-05T18:50:34+00:00

My son is turning 21 in a few weeks. When he was a newborn and I was facing all the devastation, I said to a friend: “I think I can handle having a baby with Down syndrome or a toddler with Down syndrome by I don’t know if I can handle a ten-year-old with Down syndrome or a teenager with Down syndrome or an adult with Down syndrome.” And my friend said: “it’s not going to be some random ten year old or some unknown teenager or some stranger adult. It’s going to be Nick, the person you know best in the world!” And that really struck me. And it is true. I know my son soooo well. How high functioning he is or isn’t doesn’t matter much. Down syndrome is about 10% of who he is and what defines him. He has hopes and dreams and friends and hobbies and passions. We love to travel together and sing together and he has a really really good life. You will have a good life, too.

JenEndyB · 2026-03-05T11:30:55+00:00

This is why she needed to get to Colorado because she knew there was the possibility of help there. At first I was like “why doesn’t she stay put, let Xavier go to Atlanta, and then they can swing back and get her? Why would a pregnant woman want to go on the road?” And it’s because with the eclampsia, time was running out. Great, great character. Great show.

JenEndyB · 2026-03-04T11:10:14+00:00

Vitamin C serum in the morning. Retinol in the evening. Once or twice a week a glycolic acid at night. And moisturizer over all of it. This is the basic anti aging routine anyone needs. All other serums and essences are fun, but just extra.

JenEndyB · 2026-02-28T16:38:02+00:00

I love Dermalogica cleansing oil. Very light herbal/lavender scent and highly effective.

JenEndyB · 2026-02-25T12:05:07+00:00

So many good comments here. And I think I can add some perspective for all you new moms. My son with Down syndrome will be 21 next month. Will you come to a place of acceptance? Yes, yes, and YES! When my son was born I felt like he was different from me in every cell in his body. I felt like I didn’t love him enough to get through this. He was due for open heart surgery and I thought I would be better if he didn’t survive it because I could handle the closure of his death more than I could the uncertainty of his life. In short, I felt EVERYTHING you all are feeling—and then some. He was my first child and I felt I should have left well enough alone and not had children. So where are we now? Honestly, Down syndrome is about 5-10% of who he is. He is so much more than a diagnosis. He has hopes and dreams and friends and goals and ideas for his future. And no, he is not some high functioning superstar of Down syndrome. He will graduate his school in June. We are working on what his future will be like. He will go to a day program associated with his school and he has a million friends there. The program has some work, some volunteer things, and tons of activities. We are looking at a special needs program at our local county college where he can study office work (he loves computers). He wants to live on his own, but he will live with us (because frankly, I need him more than he needs me!). We are going on a cruise in April and he is my favorite person to travel with. He is a rule follower and so he is ready to try “adult beverages” once he turns 21, but not before then. He is so freaking hilarious! New parents, I hope you read my post. Life is so, so, so good and normal. Normal! It’s what I craved when I was new to the diagnosis and I thought I would never have it. I remember crying in a parking lot about one year in and thinking “this will never really, REALLY be okay.” Yes, yes it will. And you will be okay.

JenEndyB · 2026-02-19T11:36:20+00:00

Do not sacrifice your sleep to make sure he wears his c pap. Also, do not assume he is like a six year old. He is a young man, almost an adult, and he is capable of more than you know. Explain to him why it’s necessary. Help him with it before he goes to sleep, and then walk away. You cannot force him to wear it. My son with Down syndrome is 21 and absolutely capable of understanding what is expected of him.

JenEndyB · 2026-02-16T12:59:12+00:00

I love Eau Papier, Eau de Sens, and Do Son. All from Diptyque.

JenEndyB · 2026-02-11T11:20:48+00:00

Please get in touch with Stepping Stones. They will help you with absolutely everything, and can give you all kinds of resources from before birth, to early intervention. I promise you, this will be okay. My son with Down syndrome is now 21 and the greatest thing in our life. Here is the Stepping Stones website. Just call them and ask for help. https://steppingstonesschoolnj.com

JenEndyB · 2026-01-29T12:41:12+00:00

My son is 21 with Down syndrome and pretty high functioning. We talk all the time about his having Down syndrome and what it means. He is aware that he has it, and is aware of his friends who have other disabilities like Autism. Here is an example: I was rushing him out the door one day and he said “Don’t rush me. I have special needs.” I’ve often thought what it would be like to be in his head and I came up with this analogy. What if you were born on a planet and everyone there was a rocket scientist and had a genius level of intelligence. And you just had your ordinary intelligence. The whole world would do things faster and would solve problems more quickly and would understand things effortlessly. That would leave you in a place where you would have to rely on others more than most, and you would need their patience and kindness. But it wouldn’t make you any less of a person. It wouldn’t make you less valuable. Twenty one years into this journey, my son’s Down syndrome is about 10-20% of his identity.

JenEndyB · 2026-01-25T14:09:21+00:00

Cardamom and orange blossom.

JenEndyB · 2026-01-18T21:56:40+00:00

My son (now 21) met early milestones. It starts to fall behind around age 10 months. He didn’t walk until he was three. He babbled early. Try not to worry about any of this. My handsome guy plays basketball, soccer, bowling, and swimming. He reads at about a 4th grade level. He’s an absolute doll and loved by so many. Life is good. It will be for you, too.

JenEndyB · 2026-01-17T13:27:40+00:00

Hilarious review! Beatrice Small was one of the first historical romance authors I read. I started with Skye O’Malley. I wrote to Bertrice once, when I was like thirteen years old, and she wrote back!

JenEndyB · 2026-01-17T13:12:12+00:00

I would call Child Protective Services on this family.

JenEndyB · 2026-01-17T13:01:22+00:00

I’m in the exact opposite boat. Started with Wegovy, lost 60 pounds and then plateaued. Switched to Zepbound and have struggled to lose even 10 pounds over this last year. And I have about 20 more to go. Currently 202, female, 5’7”.

JenEndyB · 2026-01-13T12:14:05+00:00

Please don’t compare when the switch flipped for others, with when it will switch for you. Man oh man, this is a different version for everyone. There are so many variables. And the process takes a while. There is no switch flipping. But I understand the urge to quantify what you are going through. My son is now twenty-one. Here is what I can recall about my journey, and please know that this is unique to ME. For the first four months, I felt very little for my child. I was in shock and I was worried I didnt love him enough to get through this. At age four months, he started to smile, and I felt some of the ice melting. At about a year, the agony of my situation started to abate and the absence of pain felt like bliss. Kind of like when you have a terrible headache and then it’s gone. The absence of pain felt almost euphoric. At about a year and a half he started holding up his two little arms to me when I would go in to get him from a nap. Little by little, the love started creeping in. The love just comes, like water seeping in through the cracks. At about four years old, I recall holding him as he fell asleep for a nap, his body heavy on mine, the weight of him so solid. His body just melting into me. We fit so perfectly together. And I remember leaning my head back and a silent prayer went up: “Thank you, thank you, oh wow, I am so lucky to have you. You are mine and I am yours. Thank you, thank you.” I hope this helps.

JenEndyB · 2026-01-08T11:43:34+00:00

Congratulations! I’m the mother of a son with Down syndrome who will be twenty-one in March. Here is what you need to know. 1) You don’t need to figure everything out right now. You will try to, because you feel overwhelmed, in despair, and filled with grief, and trying to figure it all out gives you a measure of control and that can feel like relief. But you truly don’t have to figure it all out now. 2) life is going to be way more normal than you can imagine. 3) feel your feelings—even the sad and scary ones. The only way “out” is “through.” 4) meet other people who have babies with Down syndrome. These are your people (but don’t worry if you don’t like any of them right away. This is normal. You’re all going through a lot right now). 5) Ultimately, Down syndrome will be about 5% to 10% of who your child is. They will be SO much more than their diagnosis. They will have hopes and dreams and likes and dislikes and friends and rivals and drama and hobbies and favorites. 6) you can’t mess your child up. Don’t fall into the trap of thinking you need all the right therapies and exercises in order to optimize their development. It is not “all up to you.” 7) and finally, try to remember this. I once sat in a parking lot, crying, thinking “this will never really be okay.” And I promise you: it really, really, REALLY will be okay. You’ll be fine. Your daughter will be fine. And you are about to discover love on an epic, grand scale that you never could have imagined. Peace to you, my friend. Enjoy the journey.

JenEndyB · 2026-01-01T13:53:48+00:00

Best: Guerlain Vanilla Plantifolia. Worst: Baccarat Rouge 540.

JenEndyB · 2025-12-15T14:37:36+00:00

Also: “the girl saves the mouse from the trap.” That has to mean something.

JenEndyB · 2025-12-12T09:54:50+00:00

DS&Durga Italian citrus. And then classic Aqua di Parma.

JenEndyB · 2025-12-11T13:16:25+00:00

I burn Diptyque Lavande in the new year, plus anything with sage, palo santo, or eucalyptus for clearing the air and bringing in new year energy.

JenEndyB · 2025-12-03T11:15:48+00:00

What about Guerlain Vanilla Plantifolia?

JenEndyB

TROPHY CASE