Stages of Grief to Acceptance: Down syndrome edition

Please note, I am not a psychologist, though I have seen one often enough to provide some sound advice! {But again, see a therapist before listening to me!}

At some point, everyone experiences grief; grief from the loss of a loved one, failure of a relationship, loss of a job, trauma, major medical diagnosis and so on.  Grief, though hard to admit or discuss, also comes to those who’ve experienced a change in expectations. Expectations of one’s life path or purpose in life no matter how grand or frivolous can send one into a state of sadness, anger and fear.

For those of us faced with the diagnosis of a child with some form of disability, feelings of grief are hard to shoe off regardless of the support systems around us. Parents are faced with questions such as, “What could I have done to prevent this?”, “What did we do wrong?”, and “How am I going to manage this change?” On top of dealing with these questions of, “Why me, why now?” comes shame. Not shame of the child, but shame of even thinking these questions. It’s a cycle of negativity that can give anyone grey hairs and wrinkles!

So, if there are any parents out there reading my blog who have just found out that their child is diagnosed with Down syndrome, or any other diagnosis, know that you’re not alone. The feelings that you are experiencing are normal and just because you are feeling the way that you do, doesn’t mean that you love your child any less.

Below I have outlined the Stages of Grief, and my personal experiences in each of the stages I have successfully passed. At points I worked through certain stages and then reverted backwards, which I didn’t think was possible. However, putting thought into my own grieving process, I know now that it is.

I know that during Wes’s development there will be times when I will return to certain stages of grief, and that’s okay.  It’s just remembering that Wes will reach those milestones at his own pace, and not necessarily at the same pace as “typical” children.

7 Stages of Grief

Shock and Denial

There is a good reason for shock. Shock is your body’s natural self defense mechanism to avoid being overwhelmed. Denial works the same way and helps to protect you over the short term while you’re processing the news you are hearing.

Part of my shock included feelings of being overjoyed/ blessed along with unrealistic fantasies about the diagnosis. This was then followed by the refusal to read material such as books, blogs, and message boards about Down syndrome.  {Along with the annoyance at receiving these materials as well.} I was also hesitant to contact others who are experienced with Down syndrome because it was simply overwhelming. OT, PT, ST, OHS, Alzheimer’s and Leukemia and a whole other host of therapies and potential problems were just too much to handle.

Pain and Guilt

Shock wears off and feelings of complete suffering and pain set in, followed by thoughts of remorse and plenty of, “What did I/ we do wrong?”

Questions of, “Was I messing around with my prescription too much that I caused this?” “Should we have cut back on drinking and socializing?” just rang throughout my head constantly. This was also accompanied by very long periods of sobbing, especially when thinking about what our child may or may not be able to do, how others will perceive him how will be possibly be able to meet all of his needs.

Anger and Bargaining

Frustration then anger followed by lashing out at others or blaming others. If not dealt with in a productive way, this step can result in permanent damage in one’s relationship. “Why me?” questions begin to form.

In conversations with John, I noticed myself occasionally saying, “Maybe his Down syndrome was caused by something you did.” We were also guilty of pushing each other’s buttons to the point of being in a state of fury or rage.

Depression, Reflection, Loneliness

A long period of sad reflection occurs at this point and no amount of comforting or encouragement from others will help. A period of isolation sets in followed by feelings of despair.

Speaking for myself, I have gone through periods of ups and downs since the diagnosis in December 2011.  At points I would sleep as soon as I got home, wake up for dinner, and then go back to bed. Other days I would read about others experiences to help me connect that I wasn’t alone. Most days I would feel isolated from my friends and colleagues because no matter what, a person has no idea how I feel unless they are in the same situation. And to further isolate myself, I wouldn’t do anything, see any friends, or have fun. Towards what I consider “the last straw” of grief was when I couldn’t sleep because of the severe anxiety and noise going on in my head for two weeks straight. This made me angry, so then I did something about it…

The Upward Turn

At this point, you begin to adjust to your new life and the diagnosis; you feel calmer and at peace with life and feelings of depression begin to lift.

… I began to write. This was a goal that I wanted to do for a long time, but I felt so absolutely inept to do so. I think that this was because I had nothing to write about and now I do {thanks Wessie poo!}. This simple act writing has helped me to cope with my personal feelings of grief and bring excitement back to my pregnancy. John and I both began to dress up Wes’s room again as well as prepare other things in our house such as our new half-bathroom.  We actually leave the house other than going to work, which is huge!

Reconstruction and Working Through

At this point, you become more of a functioning human being again and looking for realistic solutions to day-to-day hiccups.  You also search for ways to reconstruct yourself and how you will approach life from now on.

I would say that at this point {2/4/2012} John and I are just entering this stage.

Acceptance and Hope

You learn to deal with the reality of being a parent of a child with a diagnosis, but it won’t automatically mean that you will be overjoyed with happiness.

This is a tricky step for us because even before we had the 100% chance that Wes would have Down syndrome, we accepted him for who he is and had hope for who he would become. This step of the grief process is a little tricky when true loss is not involved because we didn’t lose Wes, it was just our understanding of who his is and will be that has changed. Maybe this is a stage that we will enter into at each milestone Wes work towards? I tend to believe so. Acceptance and hope will come one mini milestone at a time.


I am pretty familiar with the stages of grief and how allowing myself to go too far into these stages would only negatively affect my son and my relationship with my husband and others. Though I know I cannot avoid grief throughout my life, I like to think that I can find ways to somewhat outsmart the deep pitfalls that can be easily slipped into.  It’s too easy to get stuck in each of these stages, and personally I’d rather be realistic and happy because that’s who I am, or better yet, who I choose to be.  I can’t stand people who complain and fish for attention, especially on Facebook, so I don’t want to do the same. {I’m clearly venting right here.} This does not come automatically and it took me a long time to figure out what works for me to pass through these stages while not bringing on negativity towards others. Some people feel better speaking to counselors or another trusted individual. I prefer reading and writing. Writing helps me to find the positive in what can be a downright crappy situation

This may or may not work for you, but I find that if I ask myself, “Is this the worst thing that has happened or could happen to me?” and I say, “No.” then I’m set. And you know what? There are crappier things in life that I’ve experienced, and if I can live through those experiences, what’s a little thing like Down syndrome?


5 thoughts on “Stages of Grief to Acceptance: Down syndrome edition

  1. thosenewmans says:

    Looks like you got your blog all put together!! 🙂 Looking good!
    Love your post- I need to harvest that positive energy please!

  2. Sounds like you’re getting the info you need. We also had a prenatal diagnosis, and my daughter will be a YEAR in a few weeks. (I have no idea how that happened!)

  3. Greg Johnson says:

    Sounds like you are ready for your NEW and AMAZING adventure!

  4. mom says:

    What a wise woman you have become! So proud of you!!!

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