Wednesday, October 2, 2013

Beyond Down Syndrome

A new commandment I give to you, that you love one another, even as I have loved you, 
that you also love one another. 
John 13:34

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 
gentleness and self-control.
Galatians 5:22

I am in the office.  The room is dark except for the light of the computer screen in front of me.  I am reading another birth story, another family surprised in the birth of their son, a son with Down Syndrome.  A family whose joy at the birth of their child was tempered by the diagnosis of Trisomy 21.  And it is so familiar.  And heart wrenching.  And I feel tears pool again because this scene, this moment still lives fresh in my memory - 22 years later.  Because in that moment of revelation there is loss.  Loss of a life expected.  Loss of dreams of what could have been.  Loss of solid ground.

And then I hear the creaking of the floor above me, and soon the sound of feet on carpeted stairs.  And then I feel my daughter's soft arms wrap around me from behind my chair.  I reach up and pull her arms tight to my chest, savoring the moment.  Good Morning. My voice breaks the stillness.  I turn and look at her face, reflected in the light of a thousand pixels.  And my heart, oh my heart overflows with the love I feel for her, captured by that morning hug like a beam of warm afternoon sun caught in a prism and then exploded into a hundred rainbows.  My heart explodes in a hundred rainbows of love.  For this daughter.

And I know that I share this feeling, this expansion of the heart, with a thousand other mothers - a million mothers - countless others who love their children as I do mine.  And I realize, again,  that there are fewer differences between us than there are shared experiences.  My daughter has Down Syndrome.  It has been a journey of joy, not a death sentence.

Yet there are differences.  More doctor visits.  Therapies.  Early Intervention.  IEPs.  Inclusion vs self-contained.  There are decisions to be made and scaffolds to be built.  There are differences.  However, great strides have been made in quality of life, in education, in health, and in acceptance of our differently-abled population.

October is Down Syndrome Awareness Month.  I'd like to share a few facts:  one out of every 691 babies born will have an extra 21st chromosome.  Although the age of the mother is a factor, the majority of these babies are born to mothers under the age of 35.  Down Syndrome occurs across the spectrum of race and economic level.  There are approximately 400,000 people living with Down Syndrome in the United States.  The life-expectancy of someone with Down Syndrome has increased from 25 in 1983, to 60 today.  Cognitive and developmental delays are very much a part of life with Down Syndrome - and the range of these delays can vary greatly.  With help and support, people with Down Syndrome lead full and productive lives - they work, they attend school, they participate in their own life decisions.

I am in the office - thinking about the things I wish and hope for my daughter - things I wish and hope for the people around her - things I wish and hope for new parents and other families with sons and daughters.

I wish that being 'special' wasn't an automatic label based on a diagnosis for a young woman who, in my eyes, has truly EARNED the description based on her unique personality, her unique outlook, her unique actions.

I wish that people would take time and effort to get to know her - get past the challenges of understanding her speech, past her loops of conversation topics, past her wanting to please, past her drama moments - to her sense of humor, to her empathy, to her unique intelligence, to her spirituality, to her joy.

I wish there wasn't disappointment in the disability, but rather celebration in the ability - I wish it was called Up Syndrome.

I hope that other parents, other families, other communities can learn as much from their differently-abled members, sons and daughters, as I have learned from mine.  I wish them joy in the journey of mixed challenges and blessings.

I hope that my daughter will be safe from any who want to take advantage of her.

I hope she continues to search for and find purpose.

I hope she experiences true friendship.

I wish for more than surface acceptance - I wish for relationship - for my daughter, for others like my daughter, for the families of people like my daughter, and for the communities in which they ALL live.  Active, vibrant, caring. supporting.  Beyond Down Syndrome.

Jesus calls us to fellowship - to love one another as He loves us.  Unconditionally.  With compassion, forgiveness and grace.   I wish for the kind of fellowship that sees the heart of its members - that celebrates the differences - that cultivates all parts of the vine - and recognizes the fruits of the spirit in every member - no matter the number of chromosomes.

Heavenly Father, Today I thank you again for the gift of my daughter.  She is your perfect child.

*** If you are interested in more about Down Syndrome, or about reading some other blogs, please feel free to use my Down Syndrome tab.  I highly recommend the blogs by Noah's Dad, and Kelle Hampton for stories.  The National Down Syndrome organization sites are full of information and other resources.

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  1. Hi Janet! First of all, that photo of your daughter is so beautiful. She is just glowing in it! How old is she? I'm guessing high school.

    I will join you in your prayer, especially this month, for more acceptance and joy for her. And for you. It is a hard thing to be the Mom, and want so much her daughter. I know how much love you have for her, and her for you, I'm sure. I love that line "I wish it was called Up Syndrome".

    Are you involved in Downs Syndrome groups? You would be such an asset! To speak to other families, give your story of hope and love...a real inspiration. Just like you've been to me this morning.

    Happy Wednesday!

    1. Hi Ceil, Thank you for your prayers. Being a parent of a person with Down Syndrome is probably not harder than being a parent - there are simply a different set of challenges and blessings. I have read so much love from parents for their children - I know that mine for my daughter is not unique - neither more nor less - it is a mother's love - plain and simple. This picture was taken along with Sierra's high school graduation picture. She was 20. She graduated at 21, although by law, she could have gone to school until her 22nd birthday. She's 22 now (although she's starting to let me know that 23 is coming in May...)

      I have and have not been involved in Down Syndrome groups throughout Sierra's life. As a new parent, they presented a wonderful community of similar experience and gathered wisdom and resources. As Sierra grew older, we went to fewer meetings for many reasons - the comparisons, just like in the blogging community, were always there - how to achieve more and better, how our children were fitting in and being accepted, how to be a better advocate for our children. I got to the point where I wanted to enjoy my daughter as she was, not as an image or dream based in what if's and could-have should-haves. We got busy living.

      I am now beginning to reach out again - as Sierra meets more and more adults with disabilities - many of them decades older than her - as our family begins to travel the road of after school, and assisted/supported living, possible employment, and future relationships, and especially - now that our family has hopefully settled down in one place.

      I would love to share our story with other families. I sure don't feel like I would have all their answers, though.

      Happy Wednesday to you and yours!

  2. A beautiful post & a beautiful young woman! Thank you for sharing this with us all!

    1. Thank you, Joanne - and thank you for visiting today. I hope you have a wonderful week. Janet

  3. Hi Janet,
    Thank you so much for posting such a beautifully written piece. I will join with you in prayer for true acceptance and relationship for you and your daughter with others who are understanding and love unconditionally.

    1. Hi Cindy, thank you for your prayers and encouragement. I think you put it exactly right - I wish others could share true relationship and acceptance of not only my daughter, but others who are differently abled. It's the true part that means the most. I'm glad you could visit. Janet

  4. What a beautiful picture of your daughter, Janet. Thank you so much for sharing this. I will join you in your many wishes. I pray we all learn to love and accept others as Jesus has loved and accepted us. I love what you said here "I wish there wasn't disappointment in the disability, but rather celebration in the ability." You share such a beautiful and powerful message. Blessings to you. Thank you SO much too for your kind message on my post today. I haven't responded to comments yet as I'm so moved by them and know trying to express my gratitude may bring a few more tears, but I do plan to respond soon. I may keep saying this but I'm grateful for you. Thank you for linking this beautiful post up for Three Word Wednesday.

    1. Beth, hugs and hugs You are so generous and encouraging. I meant it when I said - if you find you need to talk to someone who isn't physically near - if you need someone to listen - I am here. Love, Janet

  5. Janet, my kindred friend on the same thought pattern - smile. Thank you for your beautiful comments. Your daughter is just radiant in the photo above and it sounds like she has a heart to match.

    Your words are an inspiration to all who have any road to travel other than the one they pictured in their mind. I believe this is ALL of us, right? We never get that picture, we get so much more than we could have ever imagined if we only trust. God hand-selects each one of us for a special purpose. Like you had said in your comments to me, it is all about the obeying and doing and having faith in His plan. Re: the groups and wanting to just experience your daughter as she is and not the what ifs - I can totally relate and it is why I'm not in a Sjogren's group. I feel like sometimes we just need to move forward and be 'in' whatever God asks of us and not put that in the hands of anyone else. He has this; we just have to trust and do our part. You certainly have done that and are an inspiration to all parents. Our potential is only limited by our imagination, no matter what "label" someone puts on us.

    Praying for love, acceptance, unconditional love and a lifetime of joy for your daughter as she begins her new chapter. And praying for you to remember Philippians 4:6-7 as she is making this transition!

    Your words are such a blessing and inspiration.

    Blessing, my friend.

    1. Kim, and again we're on the same page...Sierra and I had to get out of the house for a couple of hours after the bug guy came, so we went to a park - with trails. I brought my camera and kept hearing whispers of the journey, not the destination, being the piece I needed to see. I kept seeing steps in a journey written in the trees and on the trail. New post coming - but just LOOK at your comment! Thank you for the prayers and for the encouraging words. Hugs. Janet

  6. Janet, the beauty of your mothering shows...the way you greet your daughter with joy, not impatience. So lovely and so well written.
    Thanks for your faithfulness and...your unabashed (and probably fought for) joy!

    1. Thank you, Summer, for your encouraging words. I love when my daughter comes down and gives me those good morning hugs - It's like my own personal snuggle for the day...Yes, there has been some fought-for joy, but you know how that one goes - struggle builds perseverance and with perseverance comes wisdom - so take joy in everything... I'm glad you could visit, have a wonderful week Janet

  7. This is incredible. I especially love this: I wish there wasn't disappointment in the disability, but rather celebration in the ability - I wish it was called Up Syndrome.

    I'm going to share this on my blog. Bless you... and your beautiful daughter. e.

    1. Thank you, Emily - she really IS beautiful, inside and out. I'm such a mom... Janet


I know we probably haven't met in person, but I believe that the sharing of our ideas and thoughts, sometimes our hearts and souls, makes us more than strangers. I would like to say friends. Thank you for taking the time to contribute to my little space - I appreciate you.