Sunday, October 7, 2012

31 for 21: Moving Past the Shame

I was angry after Ellie was born.  A chronic suffer of low self-esteem, I thought, "I couldn't even get procreation right.  I couldn't even create a normal baby".  I curse those thoughts and I am ashamed.  As though the union of two people creating a living being is the easiest, most simplistic accomplishment in the world.  It is not, let me tell you, but that is a whole other post.

A child is a miracle.  Every child is perfect is her own beautifully unique way.  Children are not mistakes.  They are not a parent's accomplishment.  They living beings to be treasured and celebrated.

The wide array of emotions I felt after Ellie was born was astounding.  I was failing about on a roller coaster of grief.


Three years ago, I woefully gazed upon my friend's little blond-haired, blue-eyed cherub who was born just weeks before my Ellie.  Why?  Why did she get two perfect little children when my one and only child has a syndrome?

Make this go away.  This isn't fair.

Why me?  Why us?  Why my/our child?


This cannot be right!  Come on!  We were only going to have one child.  I did everything right.  At least I tried to be so very perfect.  The model pregnant woman.  I took my prenatal supplements.  I took high levels of folic acid due to my Irish heritage to help prevent neural tube defects.  I went to all of my prenatal appointments.  I did prenatal yoga.  I even did aqua aerobics with ladies as old as my grandmother.  I tried to be perfect.  I tried to do it all correctly.  And I believed failed.


Why is my baby broken?  What did I do wrong?


My cousin's child has sandal gap toes and she doesn't have Down syndrome.  Those slanted eyes, well that could be because her little newborn face is smushed from the birthing process.  Her muscle tone isn't that horrible.  Right?  Maybe this is all a bad dream.  Maybe there is a mistake.  I bet her karotype will come back with 46 chromosomes.  I am certain it will.  She cannot have special needs.  I don't know how to raise a child with special needs.

Sadness.  Loneliness.

As I looked into Ellie beautiful, chubby cheeked face, I felt love.  Unbelievable, fierce, protective love. . . and sadness.  Sadness because her life was going to be difficult.  Sadness because I would never be a grandmother (selfish, I know).  Sadness because she may be teased and made fun of.  Sadness because Ellie may not be best friends with my friend's little girl as we had so cheerfully believed while J & I were pregnant together.  Sadness because rather than having snuggle bonding time, we were bonding with a cardiologist and a geneticist.

All of these thoughts circled around in my mind during the first few months after Ellie's birth.  I was extremely afraid to utter them out loud.

I was afraid that people would think I didn't love my daughter.  

I kept most of those thoughts carefully bottled up . . . until now.

When life throws a curve ball, many of us go through the stages of grief and I went through each and every stage at full throttle and even repeated a few stages.  I grieved for the child I thought I was going to have.  The child that never existed.  Yes, I also grieved for the difficulties that my little Ellie was/is going to face.  The future is never certain, but I do know this: I have and will always always always love my little girl.

I do not regret having Ellie.  What I do regret, is not celebrating her the way I should have after she was born.  I want a do-over of the first few months of her life.

I am revealing all of this now, because I imagine that some of you are early on in this journey and are perhaps feeling some of these same feelings.  Maybe feeling guilt.  Maybe feeling alone.  Maybe feeling anger.  I am here to tell you that you are not alone.  I have discovered through many of my friends who also have children with special needs that these feelings and thoughts are common.  Normal.  It is okay to grieve.  It will get better.  Celebrate your little boy or little girl, but do not feel obligated to celebrate Down syndrome.



  1. I don't think I will ever truly forgive myself for those few days/weeks. I will always be ashamed of all those feelings even though I know how normal they are. The second pic of you and Ellie is my absolute fave!

  2. lovemy3, I will never forgive myself either. . . but I am trying to move on. Ellie knows she is loved and that is so important. HUGS, mama bear!

  3. Thank you for sharing... my own story is different but i still have gone through a confusing, long, hard,journey with my own daughter. It helps to hear that you are not alone and it really does get so much better.

  4. I had a LONG month after Avery was born..i know what i felt was completely normal..and you have to go through it to some sense i feel like..but when i hear others who didnt.who say that didnt have any bad times after they were born or didnt go through any of the greiving really jealous and wish that would of been me!!!! then i tell myself that they must be lying to themselves to make them feel better;)

  5. What a powerful post. I still feel a little bit bad. But I've been working on talking about it with people who have really opened my eyes to the power of forgiveness. And I work on forgiving myself all the time. It may take a while, but this is an important step. Thank you for sharing such honest and raw feelings. Even though many of us have had a similar process that does not make each one extremely difficult. Recognizing your love for Ellie is the biggest step and you did that from the beginning.

  6. Never feel guilty about your feelings. Never. They are yours. You have to own them. It is the only way to move on. The more you hold on to guilt, the more you stop yourself from moving forward. Stop judging your thoughts and feelings, and simply notice them. Notice them and then let them pass. This is the only way to leave them in the past.

  7. Such a powerful post! I read it three times and cried each time. Thank you for sharing so candidly.

  8. Anna- we are totally walking the same road. I'm glad you've moved past it, at times I still struggle with the worry and anxiety but I love my daughter more than life itself! Thank you so much again for being so honest and putting my feelings into words :) your friend from Chicago !

  9. I remember feeling each and every one of those feelings. Nicely done, Anna.

  10. A beautiful post. I think every Ds mama has been there!

  11. Love the post, Anna! I had each and every one of those thoughts when Madi was born. I do feel that you have to go through that process of grieving before you can truely move on.

  12. ok crying!!!

    beautiful beautiful post! I was raw with emotion and grief for the first 2 years, i cried every single day! 3 years into diagnosis things are better but stages of raw still visit! Its a journey, its tough and magic all rolled into 1, you told it so well. love you Anna and love that ellie bellie come and stay!! x

  13. You are amazing. Ellie is gorgeous. I don't have anything intelligent to add -- I'm just completely in awe of your honesty and your bravery and your fierce love for your daughter,

  14. Forgive yourself. It's okay. You're okay.

    I used to work in the developmental services field, and I hope to work in the field again someday. It's so helpful to read posts like know what parents experience, what they makes me better at my job.

    Thank you for having the courage to share these parts of yourself. You don't know how much good you do.

  15. Thanks so much for sharing Anna! I remember when my sister was going through the first stages of finding out my niece Lauren had Down Syndrome. I remember the phone call, and telling my boss I had to leave work to be with my sister. I watched the kiddos for an hour so she could have a relaxing bath and just FEEL those feelings. Then, we went shopping. I know those feelings lasted so much more than that hour - that she still has those days/moments where those feelings can come rushing back -- I just hope that I can always be there for her. I learn so much about how she may see things/feel from following your blog. (And many others as well) I'm so thankful for this blog community - it helps an "outsider" see this scary beautiful world through the eyes of those living it!

  16. Thank you for being so candid. It is amazing the feeling we go through as we process this journey. The best part is that we all come to LOVE, some sooner, some later... but our children lead us there one way or another.

  17. Thank you for sharing your feelings. My daughter just turned two. She is perfection and I love her. But I still grieve the loss of my "perfect" child sometimes.


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