Monday, April 16, 2012

Trisomy 21

I've spent the last few days wondering how to begin this post. It's a bit like using a delicate tea cup to catch a drink of water from a fire hose. There's just too much coming at me. Somehow though, in the late hours of the night as I nurse this new little being I've had the chance to sort through a few thoughts and wanted to record them here for me, for family.

When Elias was born, he had a few 'markers' that created some concern among the nurses. Namely, the excess fatty tissue at the nape of his neck, the gap found between the large toe, simian creases across the hands and a protuberant tongue. His facial features were not so obvious and unlike other babies he didn't have quite the definitive hypotonia (lack of tone) in his body. Nothing was said to us but on that first night together as I burped him, I noticed the tissue on his neck and the remember clearly thinking that it looked like Down syndrome.

We had more pressing concerns though. As with each of our children, the jaundice common to newborns often peaked higher and longer than typical. This is given to their genetics and with 2 other children and little time off for Kent, we were anxious to begin photo light therapy immediately rather than wait and be admitted again later. We were discussing these concerns with the pediatrician when she brought up the 'small suspicion' of Down syndrome. Strangely I was not surprised by this, but it was difficult for Kent who I had not had the chance to communicate my thoughts from the night before. The doctor was rather cavalier as she addressed it simply because his tone was rather good. Even when I brought it up again to another doctor at the same practice, he had very little concern and felt that at worst, he might be a mosaic (where some cells in the body reflect the extra chromosome and others do not) rather than 'fully Down syndrome'. The test results would be back in 7-10 days.

Meanwhile we went ahead with the photo therapy. I requested that a priesthood blessing be given Elias and as Kent did so, his voice filled with emotion. The blessing stated that Elias had a special mission here in life and that it was to help his family return to their Father in Heaven. It called to mind the blessing I had received when all the trouble with the pregnancy started. At that time the Lord said that this child would come at the appropriate time and that he would be a forerunner of many things in our life. I had not given it much thought until then, but I knew from those words that either Elias would not be long with us in this life, or that he would have challenges that would require our family pulling together to work through them.

Nearly 10 days later, we had a draw on his billiruben levels. The initial photo therapy was insufficient, he was at at 20.9 and we were told to go back to the hospital immediately. At the time Kent also asked for the results on the chromosome testing. Literally while we were at the check-in desk, the nurse practitioner called wtih the result - positive for trisomy 21. Watching Kent's face and I knew the results without Kent saying the words.

I remember looking at my beautiful son and feeling so strange. He was still my boy, always and forever, my love for him had not changed and yet it felt like something SHOULD have changed with the pronouncement of Down syndrome. I chalked it up to denial and mulled over my feelings as a few days passed. I figured at some point I would feel an overwhelming sense of grief and loss.

In the late hours I'd surf the web while feeding my little boy. I came across several blogs and read their birth stories with Down syndrome. In particular, one from Kelle Hampton where she describes her intense grieving the night of her child's birth. Somehow I felt as if I ought to have experienced the same thing and yet as I read other blogs from Rick Smith better known as Noah's Dad, I realized that grieving and acceptance is so very individualistic. I felt a sense of wonder at how calm I was.

If being a mother of 2 already has taught me anything, it is that no child is what we expect them to be. They were their own little individuals long before God gave them to me. They each have their own strenghts and weakness's, and Elias will be no different. His weaknesses are only more apparent because of their physical nature. I am well aware of some of those challenges he will face, and I'm sure I will weep for him as he suffers and struggles, just as I will with Isaac and Keila.

My greatest anxiety was for myself, as selfish as that sounds. Could I honestly be a good mother to this child? I lack so much in patience already with the other two and slowing down was not easy for me. Could I do it now, before Elias was at a stage that would be much more demanding? How would I balance myself between my children, my husband and myself? Would I be 'present' enough to hear the promptings of the Spirit and see where each person's needs are and how best to help fulfill them?

Then I read an article by Elder David A Bednar entitled The Atonement and the Journey of Mortality. "It is through the grace of the Lord that individuals ... receive strength and assistance to do good works that they otherwise would not be able to maintain if left to their own means. This grace is an enabling power ..." So there it was, did I really have faith in my Savior that He knew what He wanted when he gave me Elias? More than that, did I have faith He would enable me to do more than I am currently capable of? Would He make up the difference where I was lacking? I have proclaimed this belief for all these years, was I ready to show it?

So for the most part, peace has taken the place of confusion and anxiety. It's a humbling thing to be a parent to any child. There is something about the process that teaches you the value of a soul and brings out the best and the worst in you. Simply having Elias in our home has made Kent and I assess and work on how we deal with Isaac and Keila. There is a greater sense of calm and we are enjoying each other more. I'm sure this will not be constant, but hopefully it will be something we return to again and again as we become better parents.

I'm so grateful for the support and positive words and service from those around us. Everything from meals, to child care just so I can get some sleep or take Elias to an appointment ... these are all things that remind me how blessed I am. A special thanks to all those who patiently listen to all my concerns (no matter how great or small) who allow me the opportunity to be a 'anxious mom' and then gently remind me that everything will be okay. Most of all I'm owe much to the gospel and my Savior. Certainly I would not be where I am without Him and His gift of family, friends and home. "For the Lord Jehovah is my strength and my song; he also is become my salvation" (Isaiah 12: 2)

As for Elias, his middle name, Tien Yeuk, means Heaven's Covenant, a reminder to us of the promises God makes to us as we do our best to fulfill our part. Initially Elias was given this name in the hopes of reminding him of blessings we are given in abundance as we live righteous lives. Now I think that he himself is our family's reminder of these blessing and promises. I'm grateful to have him in our lives and look forward to seeing him grow and what we as a family learn from him!

Many thanks to our amazing photographer, Sarah Allred.


  1. Im in tears and full of the sweet spirit thanks to you. I loved every word that you wrote. You are such a perfect Mama. Thanks for sharing. LOVE the Gorgeous photos.
    -Amanda Glenn

  2. Flo you are one amazing woman and still as beautiful as ever! I just wish we were still neighbors. I know you will handle the new set of challenges ahead of you with faith and determination.

  3. Thank you so much for sharing your stories and your faith! We love you all!

  4. When I think about it, I think of how much the Lord loves and trusts you & Kent. He knows you can handle any challenges that come your way, and he trusts you to love and nurture one of His most choice souls. You will be great, and Elias is a profound blessing. Hugs & love!

  5. flo, i wish i was there to hug you. i miss you dearly and you have always meant so much to me, even if i didn't say it often enough. you are an amazing woman and mother. thank you for opening up your heart to all of us.

  6. Flo,
    I hadn't checked your blog in awhile and was excited to read about Elias's arrival! He's so beautiful and perfect. Thank you for sharing your amazing spirit. One of my greatest fears is having a child with some kind of disability (selfish? scared? inadequate? all of the above?) but I really appreciate what you said about grace. I know your family will be blessed. Congrats again on your beautiful new addition!

  7. We used that Elder Bednar article in FHE tonight. I was so touched by it. What a beautiful application in your life at this time. I admire you deeply and can feel the love you have for each of your unique and special children in your words. You and Elias are blessed to have each other, forever. Thank you for sharing and uplifting me.

  8. Thank you so much for sharing. You are so amazing and such a good example.

  9. Flo, I was so touched by your thoughts & feelings after Eli's birth. Very tender. And I'm so glad we met again Saturday! He's an adorable toddler!