Down Syndrome

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    World Down Syndrome Day Gives Us A Chance To Shift The Narrative

    Part 1 of 2 I am still in my pajamas at 10am on a Wednesday. Scrolling through my FB feed, sipping coffee.

    The epitome of a mom totally off-kilter from daylight savings time, peeved with Winter. Who decided to finally show up in March, bringing cold temps and relentless winds. Basically, I am riding the lazy train today. It’s cool. Needs to happen every once in a while.

    Anyway, I am seeing the kind of posts that pop up in my feed this time every year. It’s World Down Syndrome Day on March 21st. I see the posts celebrating it; and I see the posts not celebrating it.

    Two sides generally. The one about how great life with Down syndrome is; and the one about how parents wish Down syndrome was not a part of their child’s chromosomal make-up.

    Validity to both sides.

    That’s simplifying it a lot. There is a lot of education and advocating being shared too.

    But it occurred to me, after reading a particularly vulnerable post from a mom about her child, that my opinion about WDSD does not fall into one of those two categories. For me, it is about shifting the narrative. My opinion is that my child is made as she is meant to be. She is a perfect conglomeration of her parents, with roots from generations of family genes that came long before her; and, she has a spark of something extra. A whole extra 21st chromosome to be exact.

    My child with Down syndrome is meeting many milestones; and most days, I forget that she has Down syndrome. But that’s not why I don’t hate this diagnosis. Believe me, I have experience with a genetic make-up that reminded me every day that my child was not typical.

    My first child was beautiful. Amazing. A. Wonder. She changed people–for the better. She taught people–without speaking a word. She imprinted her spirit on the lives of so many people. It was a good life. But it was heavy, complicated, and freaking exhausting. There were multiple medical specialists in our lives, she was profoundly delayed in all the developmental and cognitive areas, and she had so much medical complexity that doctors couldn’t quite figure her out.

    I spent my days wishing she didn’t have the genetic condition she had. I felt that she deserved a better life.  Because that’s what we are taught in this world. That disability, medical complexity, cognitive delays—these things equal a bad life. It’s not true, but it took me a lot of time to come to that conclusion; long after my first child passed away and my second child was born.

    When I became pregnant with my second child, I was terrified to repeat the same experience. I spent those first few weeks of pregnancy wishing and praying that she would not have the same genetic condition as my first child. I breathed a sigh of relief when the doctors said that she did not. However, they informed me, that she did have Down syndrome.

    And, in my less than infinite wisdom about Down syndrome, I was terrified, and heart broken. I hoped and prayed some more. Specifically—that they were wrong.

    Even after she was born, I sort of thought they’d just skip on up to my bedside and tell me, “Oh, by the way, she doesn’t have Down syndrome after all, enjoy your perfect future”. Seriously though, fear played a huge role in my denial about the diagnosis of Down syndrome. That fear was rooted in my past traumatic experiences and loss with my first child; and it was buoyed by the misconceptions and lack of understanding about Down syndrome that is propagated by the world we live in.

    I didn’t think I could lose another child without losing myself entirely. Because that’s what I thought would happen based on the doctor who “educated” me during my prenatal diagnosis—that my baby would have a heart defect, have little quality of life, and possibly die.

    But here she is, five years old and super freaking amazing. And, after having two kids with genetic differences from the “norm”, I finally get it now. Having Down syndrome isn’t an automatic ticket to the hard life. And not having Down syndrome isn’t an automatic ticket to a life on easy street.

    But somehow, this is the idea that so many of us have. If our child just didn’t have that extra chromosome, she could do all the things. But, shoot, life just isn’t that one dimensional. Life is messy, complicated, and heavy for most of us, regardless of chromosomes. And, for those of us that have more unique situations—parenting a child with a disability—our loads tend to feel messier, more complex, and much heavier. Probably because we are more isolated, and we lack the unspoken comfort that comes from moving in step with the crowd along the same journey.

    That is one of those things


    World Down Syndrome Day Gives Us A Chance To Shift The Narrative

    Part 2 of 2 that I wish was different about parenting a child with a disability—the isolation from the rest; and the feeling that our children are not and will not be supported and accepted by anyone but us.

    Having that extra genetic material or not having it is not what determines quality life or contributions to this world. And it sure as hell doesn’t determine worth. But there is this underlying theme that not having Down syndrome, or any disability, really, would be better than having it.

    And I think that’s where we are getting it all wrong. It’s not about what we are born with, but the world we are born into. Currently, in our society, by many people, life with disability, medical struggle, and/or mental health struggle is still viewed as less than. It may be freaking difficult at times, but it is not less than. The world we live in is so deeply marked by stale ideas and practices that continue to put people with disabilities in the shadows.

    So, I don’t hate Down syndrome or wish it away. I don’t even hate my first daughter’s genetic anomaly (anymore). Because, to me, that’s not the problem that needs to be solved. How this world accepts, acknowledges, and supports all the people in it, including those with disabilities, that’s the problem that needs to be solved.

    I want a better healthcare and mental healthcare system in place to support our disabled community. Hell, to support the caregivers too! I want supports in place to help guide parents and caregivers as they navigate a journey caring for their

    loved ones without them experiencing the isolation and burnout. I want a network of friends, family and perfect strangers to lift up my child, any child or person with disability, so that she can take her seat at the table with them and, together, they can enjoy meaningful interactions.

    I want to celebrate World Down Syndrome Day not just because I accept and appreciate every chromosome that makes up my child; but, also, to shift the narrative. To acknowledge that human differences contribute to the whole picture of life. To spread the idea that human worth is not determined by chromosomes. To help create an opportunity for dialogue and bolster understanding—breaking down insecurities and fostering a growth of empathy and acceptance.

    I am only one person. I know. But the flutter of a butterfly’s wings…

    And, it needs to be said that it’s okay if there are parents out there in our Down syndrome community who just aren’t in that place to celebrate, advocate, or fight right now, for whatever reason—life as a parent of a child with a disability is heavy. I am here, and I will help carry you through my words and intentions if you need me.

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    What are you grateful for? What can you be thankful for to keep you holding on during tough times?

    Please let's all share our blessings in life that we are thankful for. In
    dark and trying times (like right now), I try to always remember the things I am grateful for and remind myself that without any/all of them my life could be much less manageable

    I am grateful for:

    -Being alive!
    -Being able to walk, even if I need mobility devices
    -Having a roof over my head
    -Having food on the table
    -Having great doctors, nurses, my therapist, my shrink, numerous specialists and my clinic - and having the insurance to pay for them - as well as insurance to pay for my many medications!
    -Having a strong network of family and friends and always being able to know that I am loved and supported ...and
    -Having my relative health - things could always be worse!

    What are you thankful for?

    Maybe thank someone who you are grateful for and let them know how helpful they are and how much it means to you to have their support. Sometimes people don’t know how much they impact other’s lives!

    #Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #Stigma #BipolarDepression
    #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #MyalgicEncephalomyelitis #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deaf #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #TheMighty #MightyMinute #MightyTogether #DistractMe #MightyTogether #mentalhealthwarrior #RareDisease #ChronicFatigue

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    Surviving is just part of the journey…making the most of the time it gives you and realizing there can be good times despite the struggles is a gift!

    It’s not all about survival, there is a lot of living to do along the way. Although at times I feel like I am just treating one ailment after another, all day every day (which is true right now) I’ve decided why take all the time and energy it takes to survive everything unless I don’t enjoy how the time given to me by surviving is ripe for good times too.

    Recently I have mostly been homebound except to go to health appointments… doctors, PT & OT, clinics, therapy etc. and then only with a walker and the benefit of handicapped parking spots. But I try to continue to celebrate the gifts I have in life, be thankful for the blessings I have that make life just a little more bearable and remind myself of what I’ve been through, how I’ve survived and what I’ve learned from these experiences. If I consider all this, then I must be a very wise man 😉 I may have dropped out of college but I have a Masters degree from the School of Hard Knocks … the diploma is not needed, I know I have accomplished it and need no reminder…I’m still alive after all!

    Tough times have given me the chance to tap into my inner strength and I’ve also grown along the way. I don’t have to wait to celebrate the good times when I am experiencing some right now despite what I’m going through!

    Thank you all for the love, support, thoughts and prayers, I certainly couldn’t have done this alone!

    #Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #Stigma #ObsessiveCompulsiveDisorder #RareDisease #AspergersSyndrome #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigue #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #Selflove #Selfcare #MightyMinute #MentalHealthHero
    #TheMighty #InsideTheMighty #MightyTogether #DistractMe

    37 reactions 8 comments

    I’m new here!

    Hi, my name is Debididit73. I'm here because my grandson who is almost 2 was born with Trisomy 21

    #MightyTogether #DownSyndrome


    I’m new here!

    Hi, my name is PJsMom2022. I'm here because I’m a single parent with a child who has been diagnosed with Down Syndrome and would like to connect with others in my situation.

    #MightyTogether #DownSyndrome

    1 reaction 1 comment

    "There are Times..."

    There are times when I wish I wasn’t driving to another therapy, another doctor’s office, another sleep study.

    There are times when I find myself breaking down in tears on the ride home from a tortuous lab draw appointment thinking that this is my life now.

    There are times when I just wish my four year old non verbal daughter with Down syndrome would be able to tell me about her day at school on the car ride home.

    There are times when I wish she could just do the simplest task like unzipping her coat.

    There are times when I question are we doing enough therapy for her? Are we practicing her therapists’ suggestions enough at home?

    There are times when I wish she would just eat and drink like a typical kid and not need me to load her fork for every bite or hold a cup up to her face.

    There are times when I compare my child with other children with Down syndrome and at the same time be very proud of the things she is doing but also very concerned that my child doesn’t do “that” yet.


    There are times when Abby’s giggles snap me right out of a bad mood.

    There are times when I am thrilled when I get glowing reports from her preschool teacher and therapists.

    There are times when she performs in school shows with her peers that let me know that she will find her place in the world.

    There are times when she wakes from her nap smiling from ear to ear that my heart simply explodes.

    There are times I could just stare at her for hours as she watches and reacts to her favorite books and shows.

    There are times when listening to her try to say words or attempt to put multiple word sounds together makes me feel so proud.

    There are times when I am amazed watching her try and enjoy foods at 4 years old that I didn’t try until I was in my 20s.

    There are times when seeing her grab her toy vacuum and pretend to clean right alongside me tells me I’m going to have a friend for life.

    Let me say I’ve only been a dad to a daughter with Down syndrome for 4 years now. Her name is Abby and she is our first and at the time of writing our only. She will become a big sister very soon!

    Abby is our world. She is 4 years old and a real firecracker. Energetic, super smart and overall happy but does have her meltdown moments. She is also non verbal but knows close to 200 signs. Most of her days are spent with speech therapists trying to work on sound production and navigating her “talker,” otherwise known as an Augmentative Alternative Communication device. She is making great strides, just this October she said her name clear as day for the first time.

    This was not the exact life I had pictured living and if you’re reading this, you might be in a similar situation. As I stated, I haven’t been a dad for that long so my experience parenting a child let alone a child with Down syndrome is limited. But the moments I shared in the beginning go through my mind on a daily basis. Perhaps we have a few shared experiences. I’m sure one could mention that the concerns and worries I have could also be applied to parents’ of typical children. That’s fair, but life hits a little different when you have a child with special needs.

    In these 4 short years Abby has taught me so much about life. Most importantly, she has shown me how to slow life down and to live in the moment and to appreciate every milestone no matter how small and celebrate it. To the parents of a child with Down syndrome, this is not the life you planned, I get it. But life never really goes to plan does it?. There will be times when you want to break down. There will be times filled with worry, concern and regret. But there will also be times of unconditional love and extreme joy. Life will certainly be challenging but life will be good.


    I have a baby 4 months with down syndrome #trisomy 21 . My first baby . I want advice what can I do to manage this .

    9 reactions 6 comments

    Need advice for my down syndrome baby

    I need advice regarding the #down syndrome. I have a baby 4 months old . I don't know what to do , how to do . How can I manage this . Very much tense . If any one here faced this problem. Kindly reply