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Letting Go of Perfect – How My Surprise Down Syndrome Baby Changed Our World

Thank you so much to Holly Hanks at pheMOMenon.com for sharing the incredible birth story of her daughter Kayla.

 

We Didn’t Get What We Wanted, We Got Something Much Better

We spend so much time chasing ‘perfect’. But ‘perfect’ and ‘normal’ are elusive and false ideals. Focusing on those things can make us miss what’s really important and be volatile to our peace of mind and happiness. If we let them.

When each of my kids was born I learned a bit more about letting go of my expectations and enjoying my reality for what it was. Since all three of my kids have had to be immediately taken to a NICU to be cared for and have had varying stays in the hospital before being able to come home those ‘perfect’ and ‘normal’ experiences are something we never had.

During this pregnancy I was terrified I would have another preemie or she wouldn’t make it at all. I was also worried that this time I wouldn’t make it and would leave my two little boys without their mother. At the same time I was elated and thrilled that we were completing our family and were surprised with having one more child when we thought we were done.

When I arrived at the hospital, in active and progressive labor for once, the doctor did an ultrasound to make sure if I could deliver normally or would need to go ahead with my planned c-section. She apologized, told me the baby was breech and I would still have to have surgery.

For almost an hour after the delivery they were still working on our baby. Finally they brought her over for me to see. She was bundled in so many blankets all I could see was a tiny, red and swollen face as the nurse held her up. She had an infection, wasn’t holding her body temperature and they needed to take her to the NICU due to other complications.

We were taken to a room for me where we had to wait for the epidural to wear off so I could be wheeled down to see our daughter in the NICU. When the pediatrician caring for her arrived to talk to us I had a moment of clarity just before she tipped my world over that everything was about to change dramatically. The doctor excused my nurse from the room and shut and door. She sat down with us and told us that our precious, perfect and prayed for daughter had Down syndrome.


Baby Kayla

The bottom dropped out of my world and time seemed to slow and almost stop. It wouldn’t have changed our decisions at all but we had no idea during the pregnancy. It was hard and unexpected news because of all the challenges we knew she would face and that all our expectations had just flown out the window for good.

Time, experience and adjustment to re-imagining my idea of perfection and letting go of some of the expectations I had tied myself up with have made all the difference in accepting and knowing that our daughter is the most perfect one of us all. Kayla has changed our entire perspective about the world over the last three years. Her limitations are only those that we put around her so we strive each day to let her grow and fly and teach us what a beautiful gift life is. Our family would not be complete without her being exactly who she is, Down syndrome baby and all.

She is the most precious gift and is proof that while we may not always get what we thought we wanted, sometimes what we get is much better and exactly what we need.

Kayla PheMOMenon

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Comments (25)

  1. Tanya 04/23/2016 at 11:55 pm

    Can I ask how they missed it during the pregnancy?

  2. Ashley & Me FB Page 04/20/2016 at 10:22 am

    Just remember whe is your baby first, DS is secondary.

    From a mother worth a 26 year old daughter with DS.

  3. Carol 04/20/2016 at 8:00 am

    You’re daughter is beautiful. Thank you for sharing your story and thoughts.

  4. Lei 04/15/2016 at 5:27 pm

    She’s perfect! That smoke melts my heart.

  5. Frieda Deadman 04/27/2015 at 12:37 pm

    I had my tubes cut on the table after my one and only high risk pregnancy concluded. My baby and I are here only because of modern medicine. I am not going to tempt karma, again. I do not understand why this woman continued with $75,000+ pregnancies and deliveries.

    I have Down’s Syndrome people in my life, they are wonderful people. But, I do not understand people that risk themselves pregnancy after pregnancy when they already have a kid or even two. If this woman was so worried when she found out she was pregnant about herself surviving to care for her remaining children, why did she keep herself fertile. Her worries to keep herself around for her already here kids did not cause her to make sure she didn’t get pregnant again when she already KNEW she has a history of very expensive high risk pregnancies. I do not consider this person heroic. I consider her well served by karma.

    • Christine 05/01/2015 at 11:27 am

      wow, are you ever high and mighty. karma!? like this was some form of cosmic payback and the child was punishment.

      you are a nasty and bitter individual aren’t you. still wallowing in self-pity because of your inability to have more than one child i presume, so you go on the attack.

      until you have your own child with a disability, keep your judgmental comments to yourself. you sound like a racist pretending not to be, by saying “i know down’s people, but…” just like a bigot saying, “i know black people, but…”

      these babies are anything but a burden or punishment. they are a blessing and i could never imagine my life without my own son, who was born with a rare genetic mutation limiting his intellectual capacity. he is the love of my life and i would do it all over again to have him.
      i bet you call yourself a christian too.

      • Jennifer 04/15/2016 at 10:14 pm

        Good for you! Standing up to ignorant people like that. That made my day to see you stand up to her and defend this family that you don’t even know. Thank you! I feel like you just stood up for my daughter who has Down Syndrome too!

      • Laura 04/24/2016 at 10:02 am

        Ignore the bigoted person. All children are a blessing.

    • Lei 04/15/2016 at 5:26 pm

      Did u pay for her deliveries? Did you write the checks? Then why is it any of your concern? We all worry about our other children when we have surgeries. Your a bitter old woman.U don’t know these people and frankly ur not even good enough to speak about that prescious baby. So keep your unwanted opinion to yourself.

    • Sarah 04/16/2016 at 7:37 pm

      It is none of your business what other people do. Did you not read the part where she wrote that the baby was a ‘surprise’? Why would you even comment? Nobody cares what you think anyway.

    • Steph 04/24/2016 at 9:51 am

      What a horrible thing to say! I had four children, two of whom died from HLHS. My fourth pregnancy had a high chance of repeating the past, yet I still became pregnant to complete my family and she was healthy, thank God. The fact that you see this child, this perfect child, as karma or some sort of punishment says volumes about you as a person. I hope that your one and only child does not take after you in your attitude as we don’t need two of you running your mouth about things you know nothing of.

      Good day.

  6. Julia 04/19/2015 at 8:37 am

    I know what you mean, but look at her again, how she defines ‘ beautiful’.

    I have one most beautiful child in the world too until I know that he is autistic. My world fell apart and for a long time I questioned if anything had meaning.. However his beauty reminds me day by day that perfection is nothing and will it ever be anything. We’re happy, we’re in love, that’s all that matters.

  7. Angela 05/21/2013 at 7:30 pm

    I have a precious baby boy who happens to have down syndrome.Your words are true and your story sums up my feelings exactly. Thank you.

  8. desireechapman 05/01/2013 at 9:00 pm

    Such a beautiful baby! I specialize in special needs photography and these children are so precious!

  9. Vanessa 04/29/2013 at 7:05 pm

    She makes me smile every time you post a picture of her. She has such a strong spirit that radiates. And she is so beautiful. I hope to meet her one day!

  10. Michelle Adams 04/29/2013 at 6:45 pm

    She is utterly beautiful! Congrats!!!

  11. Mindy 04/29/2013 at 1:33 pm

    Thanks for sharing! She is beautiful!

  12. Michelle Powell 04/29/2013 at 10:35 am

    This is absolutely beautiful, and your little girl is truly an angel! My great aunt had downs syndrome, and made it into the Guiness World Record Book at the age of 69 for being the oldest living person with Downs Syndrome.She was born in a time where any child that had any kind of abnormality was hidden away like a dark family secret. My Great Grandmother was never ashamed of her, and treated her like any other child.

  13. Evonne 04/26/2013 at 8:29 pm

    This is so true in most situations in life. She is absolutely gorgeous, and that smile makes my heart leap.

  14. Katrina 04/26/2013 at 4:02 pm

    Beautifully written and beautiful little girl, Holly!

  15. Kelly 04/26/2013 at 2:43 pm

    Your little girl is absolutely precious. What a beautiful picture of LIFE!

  16. Becki Wagner 04/26/2013 at 1:22 pm

    Beautiful, happy little girl! 🙂

    • Holly 04/26/2013 at 3:34 pm

      Thanks Becki! She really is. Even when she is being a diva sometimes 🙂

  17. Rachael 04/26/2013 at 1:16 pm

    Love, love, love this! Such a beautiful little girl!