For parents who aren’t ready to celebrate Down syndrome

For parents who aren’t ready to celebrate Down syndrome

(This is a recycled blog post that I share every year in October for Down syndrome Awareness Month because the ethos of it rings true and in my opinion, is essential to bring to light. If you are a new parent or a seasoned parent to a child with Down syndrome, wherever you are in the journey today, I’m here to tell you it is OK.)

I read a blog yesterday from a mother of a child with Down syndrome.

“I love my daughter but I’m not ready to celebrate Down syndrome.”

I just want to say that I hear you. And I validate you.

Sometimes in our special needs circles certain types of people are pushed forward as spokespeople.

You’ve got the instantly accepting parent who doesn’t bat an eye at Down syndrome, but  dives right in raising awareness and helping people around him/her get educated.

You’ve got the rock star mom who taught her kid to read and potty train at a crazy early age for any child.

You’ve got the overzealous dad who claims that everything, absolutely everything about Down syndrome is just awesome.

I love and respect all these types of people.

Heck, I am/was/will be these people at different points in my journey as a mom to kids with Down syndrome.

But in our club, there needs to be space for parents who are struggling, for families who are flailing, for mothers who feel like they are failing, for children who may never be potty trained.

If you are struggling with Down syndrome today in the midst of Down syndrome awareness month, I just want you to know that you are still a vital, important, valued part of our special needs club.

If Down syndrome awareness month is difficult for you because you are not ready to fully embrace the world of special needs; it’s okay.

It’s okay.

Your journey is simply that: yours.

And it is valid.

Every person is different.

Some parents get over the shock of a diagnosis in two days and sign up to run a Buddy Walk at the end of the month. Others (like me) take a lot longer to process what a child with a disability means to the family.

My first year with my daughter Polly was difficult.

I was jealous of other mothers who could accept that Down syndrome was a small part of their children and move on.

They seemed to handle everything so much better than me.

Guilt made it difficult to reach out for support. Guilt held me back from allowing myself to grieve, actually prolonging the process.

Jealousy and guilt waste energy.

Such ruminated emotions suck up time that could be used to seek out love and support. Energy desperately needed to take care of our families, and ourselves.

I ask you, what parent has oodles of extra energy that can be wasted?

If you are grieving the loss of the child you expected: It’s Okay. Grieve.

If you don’t want to go to a Buddy Walk this year. It’s Okay. Don’t go.

If reading upbeat blogs about families thriving in the world of Down syndrome makes you feel inferior. It’s Okay. Don’t read them.

Give yourself grace.

If you are forcing yourself to do things your heart is not ready to do, that’s not awareness, that is peer pressure.

The only thing to do is love your child.

Even if you don’t ever get to the point of running a Buddy Walk.

It’s Okay.

The point of Down syndrome awareness is not to show who’s the best parent to kids with special needs.

The point is to educate people about our kids and our families.

And there are many of us. We are all different. Our stories are unique. We all need support, and grace.

And our stories should be heard.

Did you like this? Share it:


For parents who aren’t ready to celebrate Down syndrome — 50 Comments

  1. This is right.on.the. money!!!! I love reading about everyone’s journey and sharing mine. I am no expert and we are certainly not perfect. I will share this.

  2. Terrific post! Thank you for sharing it! I remember being at that place so well. Moving through it took time, support and meeting other families – but there is no right or wrong way to be after a diagnosis.

  3. I loved this! Even though I’m not the parent of a child who has Down syndrome I believe this post echoes true for every special needs families. It is a journey, an individual one, and we all have to travel at our own pace.

    Thanks for sharing.

  4. Thank you so much for this. I’ve been on the journey for 3 years now and I am still one of those parents. I love my daughter beyond words and will fight for her every step of the way but it’s still so hard. I know that one of these days I will rise to the occasion and become and outspoken advocate, soon hopefully, but I am not there yet. I just recently went to a buddy walk for a local organization on the south side of chicago but even among so many people with similarities I still felt alone. The big buddy walk in chicago is in a few weeks and I’m trying to sum of the courage to go. Each of us is different and it most definitely is an individual journey.
    Thanks again for posting this!

  5. Well said!!! Thank you. I am in the process of writing a book about our journey with our daughter, who has DS. My message mirrors yours in that it is a process. No right, no wrong. Guilt, shame, joy, is all ours to experience. In our time, our way. With support. You speak the truth. Thanks for your courage and gift to do so!!!!

  6. I couldnt have childern but I know alady adopted a ds beautiful girl I wished we could had a ds child iam evenious of parents love you blog

  7. Thank you so much Gillian. I really needed that! I’ve been feeling guilty this week because it was difficult to attend my first Buddy Walk. I wasn’t prepared for all of the emotions that snuck up on me. I have the most beautiful 8 1/2 month old with DS. Right now in my journey I’m just trying to enjoy every day with my baby. I’m realizing that it’s okay not to think about him having Down Syndrome every minute of every day. Thanks again!

  8. Thank you Gillian! Our son was born 16 months ago. The day after he was born the pediatrician doing rounds came in and told us he looked like he had characteristics of DS…I thought how could that be? I did the testing and was told everything was fine. My Dr. came in to my hospital room that night and said she went back and looked at my records and realized that they read the test results wrong and that they were actually positive and not negative as I was told. My husband was amazing excepting him immediately that he was a gift and that he chose us as his parents. It took me months of grieving and being angry that I was not given a choice. It was such a difficult time. Every photo in our house I looked at was like a before and after, wishing i could always go back to that moment when things were different. I felt guilty that I did not feel the way my husband did immediately. If you met me now and saw my son and I together you would never imagine that I felt that way and that too makes me feel guilty. That I wasn’t the perfect Mom, that he didn’t feel the love I have for him those first 4 or 5 months….I wish I could go back and tell that scared/fearful self that it will be ok, that she will love our son more than she could ever imagine, that we will take each step one at a time and it will be amazing. Last year we went to the Buddy Walk, my husband, myself and our 4 boys alone. This year I am helping organize the Walk and have more than a hundred people walking in our team..Life is good.. :)

    • I could have written your blog Wendy. I took at least 18 months and felt so so guilty I couldn’t tell a soul. I felt so evil that I wanted my old life back and I wish somebody would have told me that life was going to be good again. Nearly 14 years on and it is good and I work in the field so am able to tell lots of parents that one day it will be so!

  9. Thank you Gillian for this beautiful post. We had a prenatal diagnosis, so I feel like we had lots of time to get our heads around DS before our little one’s arrival. He’s now 6 months and I can honestly say that things are good, but the little insecurities are never too far from the surface and it amazes me sometimes what small thing can shift the balance. I hope you don’t mind that I have shared your post on my FB page as one of my ’31 for 21′ links in October x

  10. my son is 9 who happens to have Down syndrome…..this month i decided that i didn’t want to participate in our buddy walk because i’m not in the mood to “celebrate” Down syndrome. for the past month that anger i felt back in the day at the beginning of this journey has reared it’s ugly head and i can’t stand this diagnosis. i hate that my son is so very speach delayed, i hate that he gets stared at, that people expect less of him, that we have to babysit his teachers to ensure that they’re doing their job, that we can’t all travel together because he would be miserable on certain vacations……but i’m grateful to part of a community where i can say these things and not be judged for being a horrific mom for having these feelings. so thank you, looking forward to busting out of this “pitty party” soon. :)

  11. love this post..
    I too struggle on a daily basis to accept and grasp everything and anything that is happening in my family.. thank you for validating my sometimes not so upbeat feelings/thoughts..
    now i know i am not alone .. and it is ok :)
    xoxomom Rachelle to lovely Faith

  12. Pingback: Down Syndrome Awareness Month and 31 for 21 » Just a Mom with a Camera

  13. Thank you for posting this. I am a mum to a beautiful 1 year old girl with Down Syndrome. I love her to bits and I am much further on now in my feelings about it than when she was born, but I am not ready to celebrate her condition. I sometimes think I will never do that. I totally accept and adore her as she is but wish with all my heart things were different for her. Reading this has given me permission to relax a little about it though, so thank you!
    Alison (mum to my gorgeous baby Hazel)

    • Alison I understand you. I may never fully “accept or celebrate” it either. On one hand my heart feels for others and I think to myself that I should/would like to be an advocate. On the other hand my heart is at war with acceptance. On one hand I want her to be proud of whoever she is and stand out, on the other hand I want her to just be normal and fade in.

  14. This was an important post. We all process things differently. It is not a matter of right or wrong. It is a different reality we exist in once we are given a child with Down syndrome – we all adjust at our own pace.

  15. Oh hey, that’s me! Thank you for the link & apologies for the belated acknowledgment. Love this post – I think I’ve hit every one of those points in the path at various times. And while I’ve heard people argue for it, I think it is perfectly acceptable to adore your child and not love the little extra that might have blessed them with wonky hearts & other health concerns.

  16. Thank you, thank you for posting this. It hard enough to come to terms with my daughters diagnosis (2yrs) at birth, the one thousand emotions that flooded my thoughts at the time. The months trying to process what it was going to mean for me, and us as a family. Then the on going guilt/shame for not feeling like the loud parents who voice their love for all things DS. I’m at peace with her diagnosis, I still do not like it, but I love her with all my heart, and I think that is what matters most. I still have trouble saying that my daughter has DS, it still takes my breath away. I know I do not ever have to love the diagnosis. Thank you for validating my feelings and that I’m not alone. While I think while many DS forums can be helpful, some DS advocates can make those parents who still struggle feel worse about themselves. I will openly advocate for my daughter, but not DS, not yet anyway.

  17. All these comments made me remember I am allowed a bad day and sometimes I hate DS but never stop loving my beautiful son! I worry about his vulnerabilities, his lack of speech, his disinterest in actually getting out of nappies! He is Edward and yes he has Down Syndrome, but his name is Edward and he is six years old and DS is a part of him but does not define him!
    If he didn’t have DS he would still have blonde hair and hazel eyes with brown flecks! He would still be incredibly mischievous and short tempered! Yes he would speak and be out of nappies and maybe even pick a book up and read it! But guess what? I do have days when that bothers me but 85% of the time I don’t even notice! Edward is a joy to behold but thank you all for reminding me it is perfectly ok to be bloody annoyed that it was me who was chosen and not someone else!!
    Love your blog by the way!

  18. At last someone has said out loud how I feel!! Thank you. My son who has DS is 6. I love him to bits, but I’m yet to go on a buddy walk!

  19. well I have read all of your stories and it reminds me of myself hi my name is Leigh creighton and I have down syndrome and proud to be one if I have didn,t have one I would have been normal I hate my face people used to stared at me and called me names like I am retarded it was a painful experience and I feel for those parents and like my own now and here today I classified myself as special and unique we are all the same and have the same skin we are just different I am 34 years old and I don,t care what people think of me and you shouldn,t to we are here in the human race we can love we can be part of the community and be part of ourselves I am a advocate for people with down syndrome and their families and other disabilities I would like to leave a quote live life love we are people with special needs

  20. Thank you Thank you I wish I had this to read in the beginning, whilst everyone else celebrated around me and I felt like I was rotting in the deepest darkest pit of grief, guilt and pity. Thank you so much for sharing!

  21. Pingback: An unusual story of a Down syndrome diagnosis | Gillian Marchenko

  22. my message is for new parents to give themselves time, time to grieve, time for themselves, time to make peace, time to love, time to cherish, and finally time to accept. We parents have all known the depths of despair. In time you will also know the joys. take and thank you for a wonderful post.

  23. Pingback: World Down Syndrome Day 2013 - Gillian Marchenko | Gillian Marchenko

  24. Pingback: 5 things to do/not do after you receive a special needs diagnosis - ... | Gillian Marchenko

  25. Pingback: Top Down syndrome posts - Gillian Marchenko | Gillian Marchenko

  26. Pingback: Weekend Wrap-Up: My favorite {Special Needs} links from the week | My Blog

  27. I honestly don’t know how I feel sometimes. To begin with I have 3 step children and I had to talk my husband in to having one of my own so I don’t know that I will ever get him talked in to another. And in some ways I am not interested in having another. I had made up my mind that she would be it before she was born and diagnosed. 4 is a handful and I am VERY involved in my step-children’s lives. We have 50/50 custody and their mom and I co-parent at all times.
    Anyway, that being said I have definitely grieved with the diagnosis especially since I had already lost 2 children, one perfectly normal (I had him tested beforehand) but I had an accident and my water broke at 21.5 weeks and he was too early to make it, and 1 miscarriage right before my daughter with DS. I had a dozen ultrasounds before with my daughter and we didn’t find anything wrong and everything was looking perfect. I wanted a girl if I was only going to get one child, I wanted healthy and thank God she is perfectly healthy, tests before and after birth confirm that. Plus in her 10 months she has only had 2 small rounds of sickness. She was even born as the same zoological sign as me, not a big deal but kind of cool! Everything was perfect finally, then when she came out the doctor asked if we had genetic testing done. You might judge me for this but one of my deepest fears during the pregnancy was that she might have DS. I was/am terrified, angry and worried.
    I love her soooooo very much and she is so very normal. She only has mild DS features, no health issues and is only delayed just very slightly on gross motor so far. I have therapy in place for her but they only come once a month because she really doesn’t need them. I have a hard time since I have never raised a baby but I ask around, do research and keep up with the other babies around her age to make sure she is progressing normally.
    I do not want to be a card carrying member of the DS guild yet. I have tentatively joined the facebook groups for DS and I have reached out to the only person in my small town with a younger child with DS and one lady who is a FB friend who had a little boy 4 months before me. It seems like sometimes that people want to push the whole thing down your throat. The first thing they ask is have you talked to the guild…. I know they mean that as a help but sometimes I feel I don’t need the help. As I said, I do have therapies set up for her but I feel like some people try to say that your child is for sure going to have all these problems and you are never going to be able to be “normal” but the fact is she is! She is not any more delayed than any “typical” child could be.
    I do worry that at some time that she will hit a plateau. That she will start to fall extremely behind. I think anymore that is all that bugs me. Then I have those people who are just heaping praise on me saying that it must be because of my tutelage that she is so “normal”. Although I do have a Master’s Degree in Special ED that is B.S., I don’t even use that degree. I have a different job. I have not treated her any differently than I would any other child. In fact since she was born while we were in the middle of building a house, moving and my husband taking on a new job where he is not as accessible as he was before plus the other 3 older children I have I feel guilty but I have not spent nearly the amount of time and attention I feel I should spend on her!
    I told a group out loud that my daughter had D.S. the other day and that was the first time I have acknowledged that in a group. It was a group I was TDY with (I am in the Air National Guard as well as a full time civilian job) and most of those individuals I won’t see again or at least not often so that helped. Some people have started actually talking to me a bit about it (as I said I live in a small town and word got around) I assume that since her features are so mild that the people I meet that don’t know us are not sure she has it but they do fall in love immediately with her cuteness and her personality.
    She is a very easy, very happy baby although she already does have personality and has her own attitude. She has always cried when unhappy or hurt just like normal. I don’t really know what else to say other than thank you for writing this. It hit me. I needed to say all this and I do feel better.
    I will be one of those mothers who works hard to give her the absolute best shot. I will work with her as much as possible and we might be that family that hits all the milestones early because of that but really all I am trying for is “normal”. We are a “normal” family and we will continue to be. I am not interested in her DS. I am interested in her. I want her to do everything that every other kid does.
    I may be alone in this but sometimes I just want that diagnosis to disappear so that all we talk about is her. I don’t think that I care as much that she has it anymore but I don’t think it is anything I want to give too much time or thought to. I am curious if she has Mosaic DS because that could explain her “milder” symptoms but who knows, maybe she is just lucky, maybe it is because too many people abort babies with DS and we don’t know enough, maybe there would be plenty who have little or no issues but we don’t know that when they are gone before they see the light of day. I don’t know.
    I do know I love her, I do know she is doing great, I do know that is mostly on her, not me being an awesome mom. I do feel angry and sad at times thinking I may never have my “normal” child to raise but then I shake myself and tell myself why am I crying? She is normal right now, I am borrowing trouble which may never exist. That is the only bad thing that has come from her diagnosis so far, the ever present worry about tomorrow. I know all parents worry but not to the same degree. It is NOT the same. I get DAMN tired of that worry! One of these days I hope to let it go!

Leave me a comment! I'd love to hear from you!