One mother’s journey with special needs

January 1st, 2013



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Question:  My curiosity about you and Verity was about the fact that she was your tenth child.  Did it affect you as much as if she had been your first?

Answer:  You may have already read my very first, raw post about finding out that Verity had Down syndrome, and what the pain, for me, was all about. All my pain was centered on knowing that others would look on my tiny, precious baby girl and see her life as less valuable, less worth getting to know or knowing, see her as ugly, dumb, a disappointment, a hardship, etc, etc. As the mommy, I could hardly stand the intense pain this caused inside me.

The edge of that pain gradually subsided as I listened to the parents who had completely accepted the Down syndrome diagnosis their child had been given.  I saw the joy that radiated from them as they described life with their child.  I believe firmly in fully and joyfully accepting what God does, even if it takes me a long time to get there.

After Verity was born, I was still on a journey of acceptance, and there were times I still felt the pain of knowing how others were seeing my beloved baby.

And then, when she was four months old, what happened on the inside of me as I watched the Serbia video was totally transforming of my whole perspective.  Those other feelings have never come back.  In some ways it is as if I am a totally different person now than I was three years ago, as if I had been struck by heart-altering lightning. I always am very emotional–sometimes embarrassingly so!–when I try to talk about anything that is of very great significance and very close to my heart (especially now that I am dealing with the hormones of pregnancy).  But all the pain feelings, for me, are now for the real, living, precious human lives who are so totally disvalued because of their special needs that they are deliberately thrown away, neglected, hurt, and unloved.  Unchosen by even those who love Jesus, like Chadand Brandi, and others are still unchosen.  This gives me intense pain I cannot describe.

If I had the chance to take Verity’s Down syndrome away, I wouldn’t do it, because it would mean she was a different person and not Verity anymore. My acceptance of her goes all the way down inside me to the very roots.  I believe God designed her to be exactly who she is, and the superficial differences we humans think so much of don’t have the significance to God that they do to us.

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I think having many children before Verity came helped me by clearly demonstrating that each child has struggles to overcome in different areas, not all of them so obvious as Verity’s struggles. I don’t automatically see struggles as bad things in and of themselves, or expect not to have them.  I know my heavenly Father has lovingly hand-chosen my own struggles for me for His good purposes, even if they cause terrible pain and confusion, as in broken relationships.  It’s those struggles that He will use like tools to form my character into the character of Christ if I do not reject them.

Before I went to the eighteen week ultrasound for the baby boy I’m carrying, I picked Verity up from her nap and snuggled into her sweet softness, feeling her arms around my neck and her tender kisses, and was overcome with emotion as I realized–I would be overjoyed to learn that we were going to be gifted another baby with Down syndrome. It would have added complications to life, but we already know that God has all that in hand and will help us. (My two older girls had been telling me that we already had two girls with Down syndrome, and now we need a boy with Down syndrome!)

I understand that not everyone agrees with this perspective, and it may even shock some people, but for what it’s worth, that’s the best description of where I am on the Down syndrome journey right now. I have not felt pain because of Verity’s Down syndrome or differentness since watching that Serbia video, even when others make it obvious that they’re seeing her on a surface level, comparing her with children who don’t have Down syndrome, and not valuing her for the funny, sweet, spunky, determined, different little person she is and for the obstacles she constantly faces and overcomes. They are the ones who have the flawed perspective and are the poorer for it, and I feel sorry for what they are missing out on in life.

To an even greater degree, when I am out in public with Katie among strangers who have no idea of her history, I already know that nearly everyone will see her as odd and even embarrassing and will avoid direct eye contact with us and pretend they aren’t curious about her issues. How differently we see her because we understand the inside of the story.

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I guess I am more and more at peace living in that conjunction between the knowledge of the inner reality of the privileged position we are in, and the misunderstanding so easily caused by outward appearances. Having people put us on a pedestal and think we are heroes, or on the other hand, having some feel sorry for us or be judgmental or get offended with us over things they don’t understand about our family’s life (that they think they do understand)—all these are not based on an understanding of the real reality.  I have learned that misunderstanding is going to happen sometimes.  Anyway, sometimes I am the one doing the misunderstanding.

For me, the journey with special needs has been similar to learning to be a Jesus-follower.  There too, we are in the world but not of the world.  Sometimes we will be misunderstood by those who are judging us according to their own preferred set of man-made rules.

And there too, in the midst of the obvious struggles of life, we can have inner joy, and a peace that passes understanding.

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17 Responses to “One mother’s journey with special needs”

  1. Lori says:

    I love reading your posts—they are very inspirational to me, and very valuable as I deal with my own challenges with my 3 IA children.  Thanks for writing and for sharing.

  2. Mary says:

    Beautiful…honest…I loved that you shared your joy at the thought of having another child with DS. I feel God moving in my heart in the same way. Knowing…many won’t support me…but trusting Him…

  3. Rachel M says:

    Thank you God for speaking to so many through Susanna! I needed to see this perspective tonight. Yes, we are in the world, but not of it. The comparison to life as a “Jesus Follower” was so helpful. Thank you for taking the time to write when you are just about to fly out to see Tommy!

  4. Cinderellamommy says:

    Perfectly, beautifully written (as always) – your genuineness and wisdom so often speak directly to my heart and where I am in my own journey! So many others, too, I’m sure feel this way.  Praying for your preparations this week and for your upcoming travels! ~ Laura

  5. Priscilla says:

    Oh, I love posts about that sweet Verity! And I love the picture of the girls backs…you can really see how much Katie has grown!  Good luck on your upcoming travels!

  6. Deanna says:

    How we adore those two precious people, Verity and Katie!
    Praying for your trip and the preparation for it

  7. sabrina says:

    Love this post, Susanna!  

  8. lisa says:

    to think that if verity had not been born as she is, katie would not have her for a sister; just too painful to consider for more than a moment. although i’m not one for ever considering alternate possibilities, it is amazing where humility can lead, and what great things can manifest because of it.

  9. Alexandra says:

    This is a beautiful post – thank you!  I love hearing about sweet Verity!!  But I am most inspired by the photograph of Katie and Verity standing side by side – oh my goodness how much big sister has grown!!!  God’s work is so evident in your daughters, Susanna!  Praying for you all are you prepare your home to add precious Tommy!

  10. Cayt says:

    I hope that you do not mind me commenting on your blog – I am not a parent or a Christian, but I’ve been reading for a while and I wanted to say that I think that Verity and Katie are beautiful, regardless of their ‘disabilities’. It has been inspiring to see how strong Katie’s spirit is and to see how far she’s come in such a short amount of time, and Verity is just adorable, cute as a button. Happy new year to you and all of your lovely family.

  11. Kim says:

    You know, I love doing therapy for those with developmental disabilities or intellectual disabilities not because they are so jolly or special.  I like meeting them, hearing their stories, finding out how they see and think about the world.  They are interesting, just as we all are.  They are our brothers and sisters in Christ.  They are loved and love.  They just…for lack of a better expression…they just are who they are.  That in itself is something to celebrate!  So I get why you wished for another child like Verity and Katie.  They are blessings!!
    And wow is that Katie doing some growing!  

  12. Christy says:

    It is a beautiful post! I love reading your posts and having a glimpse into your world. Your children are a blessing and they are blessed to have you as their mother. Praying for you all. :)

  13. Jen says:

    This post brings back so many memories.  It leaves me in tears.  You know, I will be forever thankful for Verity’s life and the impact of our MOMYS exchanges.  The Lord has used your sweet precious girlie to change my heart and our family is forever changed.  So thankful for you and Verity and the way you have allowed the Lord to use you.  Much love to all of you!

  14. Tami Swaim says:

    ~ I haven’t yet congratulated you on your pregnancy!  I was so overwhelmingly happy for you when I read that post!  Also, congrats on your upcoming trip to Tommy!  ~

  15. Katie says:

    Verity and Katie and every single one of your children are perfectly made in God’s own image.  My heart breaks too for those who can’t see the joy they can bring to everyone around them.  
    I don’t know what I would have done if I’d never come across your blog, and subsequently the world of IA and SN adoption, and had received a prenatal diagnosis of DS.  Wait – can DS be detected via ultrasound?  Because I do know nobody’s poking my pregnant belly with any needles ;)  I mean, I know WHAT I would have done – I would have had a baby, because that’s me, but I don’t know if I would’ve struggled with the diagnosis or if my own family history with DS would have changed my perspective.  Now… I feel like if I went to the doctor tomorrow and they said “You’re pregnant and the baby has DS”, besides calling the pope (because I am abstinent), I would probably jump for joy.  I’m thankful for that perspective every day and I wish more people had the privilege of having someone with DS in their lives so that they might have it too.  Beautiful pictures of your girls, by the way!

  16. Lisa says:

    Susanna, thank you for sharing your family and your love of Jesus with us!  I have been reading your blog for a little over a year, and God has used your words, to encourage my husband and I to adopt a little girl with DS.  She is 4 and we know she will be a wonderful big sister to our 2 year old daughter who also has DS.  :)  Praying for your journey to bring Tommy home and for your pregnancy!  

  17. Rosemary says:

    There’s a lot to be said for that extra chromosome … and an even greater lot to be learned from it. It is the chromosome of unconditional love, carefully placed in certain children by our loving and gracious Father, Who knows the families in need and in awe of loving and learning … Safe travels, Susanna. 

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