Sunday, August 14, 2016

On Life and Loss in the Down Syndrome Community



Today I hold my baby because another mom cannot hold hers.

Nine months into this ride – this roller coaster I call Down syndrome – I have realized that I love my son more than life itself.  I can only assume that this love comes from the extra blankets of protection I wrap around him, the extra time and energy he needs, and of course, the little personality traits that come from having an extra chromosome.  In my experience, babies with Down syndrome are angelic.  Every last one of them.

There are days when I hold my son just because that love is so intense, but then there are days when I hold him because another mom has lost the physical being that encompasses this love.  Today is one of those days.
 
The Down syndrome community lost a member today.  A baby boy only 12 days older than my son earned his wings and is no longer in his mom’s arms.  My mind and heart are heavy.  I feel the weight of the disability, congenital heart disease and the hard and desperate times that can accompany both.  I feel the weight of not taking life for granted and being so incredibly thankful that my son’s heart defect is not significant.  On days like today I do not care when he’ll walk because damn it, he is alive.
 
But mostly I think I feel the weight that this mom - whom I’ve never met - feels.  Her pain is in the pit of my stomach and in the center of my heart and mind.
 
Children with Down syndrome are still relatively uncommon.  Those of us who have one know the incredible and unique gift they are to the world.  These children will change how people view the world and what they value in the world.  They will make every life they touch better for reasons that are far too many to explain.  Yet too many of our babies are lost to abortion and complications in the womb, so we cannot possibly fathom the loss of another.  Not a single one.  That intense and indescribable love is tearing a hole in one momma’s heart that is big enough for the whole community to feel.  A loss for her is also a loss for us.

Mothers of children with Down syndrome band together and stick together – we are a force to be reckoned with.  We live in online communities where we answer each other’s questions night and day and we raise each other up around the clock.  We constantly share resources, give advice, and lend support and a helping hand.  When one mom is struggling and feeling negative, there are twenty moms who are positive.  When one mom is hurting, EVERY mom is hurting.

We mommas go through a lot.  The extra appointments that are oftentimes equivalent to an emotional septic tank; the unanticipated health concerns that only a specialist two hours away could address; the physical, occupational and speech therapies that tire you and your baby to the core.  We can never reconcile the guilt of not engaging them constantly or heaven forbid, spending time by ourselves.  Finally, and for me the hardest, we will never stop anticipating the sadness we will take on when someone decides not to be our child’s friend or exclude them from activities.  True, mothers of typical babies can have the same concerns, but for us the moments are hardly fleeting.

We are tired.  We are tired of advocating, we are tired of repeating, “People first language please,” and “Stop saying ‘retarded’.”  We are tired of the struggles and most of all, we are tired of feeling alone.  When we retreat to our phones, we know someone is there, someone understands, and someone cares.  That is our virtual community, and for a lot of moms of babies with Down syndrome, their easiest and maybe ONLY refuge.

So, please allow me to mourn with my online community.  That is often all I have.  Do not judge me for turning to other moms I have never met when they are often the only ones available who have truly walked a day in my shoes.  These moms are strong, they are courageous and they are proud EVEN when they are tired.  And when one hurts, we band together, hurt together and heal together.  And that is what I call community.

Photo credit: http://www.erikaleitch.com/


11 comments:

  1. God Bless my daughter has a downs baby just had open heart surgery but thank God he is doing well. Love him more than words can say.
    So sorry for this Moms loss.

    ReplyDelete
    Replies
    1. Your daughter has a baby with Down syndrome.. "People first language"
      God bless your grandson.

      Delete
  2. Fantastic info on Down Syndrome. http://dsdaytoday.blogspot.com/

    ReplyDelete
  3. Sorry Sammie, but please use People First language. Your daughter has a baby with Down syndrome. Baby first, DS second. See the article is correct. We do correct folks.

    ReplyDelete
  4. Beautifully written....thank you! My daughter with Down syndrome is only seven years old and has already battled brain cancer. I credit that extra chromosome for giving her the strength and determination - as a tiny seven week old baby! - to hang on through a surgery that could have failed in the worst way. I truly believe that God created Down syndrome to show the rest of the world what "in His image" really means!

    ReplyDelete
  5. Sammie - you can help our community by using people first language. In other words, your daughter has "a baby with Down syndrome." The disability does not define your granddaughter, she is s person first, disability second. I made that mistake at first too, but know the importance behind it. People don't mean any harm usually, but correcting them is good as it defends our kids and reminds them to see the child and not he disability.

    ReplyDelete
  6. This comment has been removed by the author.

    ReplyDelete
  7. amen to this article! i have so much support throughout my community and my family. i realized early on how very blessed i am. from my husband to my mother to my best friend who has moved in with us to help not only with my 3yr old with DS but with my "typical" 15 yr old son. However along the way i have noticed that noone (besides my husband) really understands the challenging times quite like that of my online family. I look up to so many of the women i share stories with and i am very thankful everyday to be able to have support and give it also. very beautiful blog, bless you!

    ReplyDelete
  8. Beautifully written. It takes a special type of courage to walk this journey but so very worth it. Our daughter with Down Syndrome is now 21 and still has mountains to climb but she challenges us daily to give our best like she does. Don't let go of your dreams for your child..they may look a little different but they are just as world changing as anyone else's. Check out our website ReasontoBake.com to hear our story.

    ReplyDelete
  9. We just had our third baby, unexpectedly she was born with Down Syndrome. I've still not been able to gather the correct words of what my heart feels and thinks. But you just did. Every word, is exactly my thoughts. Thank you for this.

    ReplyDelete