Welcome to Kelsi’s Corner | Having a child with Down Syndrome

My beautiful daughter Kelsi turns 3 this week and I can hardly believe it.  I am overwhelmed with my love for her and the daily joy that she provides to our family.   Kelsi’s Corner is a gift to her as a thank you for transforming me into a better mother and a better human being.  She is the light of my life- a light at the end of a dark tunnel that I never thought I’d see.  This is a story of my transformation from despair to life and hope.  The truth is Kelsi has Down syndrome and I wouldn’t take it away.  But the other truth is that I didn’t start out feeling this way.  In fact the emotions I just described are almost opposite of the way I felt days, weeks and even months after receiving the diagnosis.  The truth hurts and sometimes so much that it’s hard to say aloud, especially when it goes it against everything you “thought “ you believed in.  So here is my truth.

During my 20 week ultrasound, when I found out I was having another girl when I was delighted!  When I then found she had a heart defect I was distraught.  When I found out she had Down syndrome I was devastated.  I am pro-life, or at least that’s what I’d told myself for the last 30 years.  All life is valuable.   Trust in God.   Everything happens for a reason.  All such inspiring truths until you are personally facing struggles you had never imagined.   When I heard the words Down syndrome I immediately thought my life is over.  I will have an adult child in my home until I die.  I will never go on vacations again.   My first-born daughter will be stuck caring for her forever infantile sister.  And those are only a few of the hopeless thoughts that went through my head.   My heart hurt more than it ever had.    I was in shock, it scared me, and it was more than I could handle.  I couldn’t talk to anyone, I couldn’t go to work,  I just cried and tried to figure out how to wrap my head, my arms, and my heart around my situation.  Here I was in a position where I believed I knew exactly what I was supposed to do and I did not want to do it.  I did not want to have a baby with Down syndrome.  This in itself altered me forever.  To be faced with a decision that shakes the core of who you think you are has a monumental impact on the person you become- whichever road you choose to take.  As you already know I chose to sustain the pregnancy but my agony did not end there.  Over the next few months of my pregnancy I lived in fear and disgust.  Disgust with myself for the way I felt about my baby girl that was growing inside of me.  The excitement, joy, and anticipation I felt with my first child was replaced by fear, anxiety, and sorrow.  There is a lot in the middle as the transition from despair to happiness did not occur overnight.  I had to educate myself, break down my own mental stereotypes, and consider the fact that I really knew nothing about this “awful” diagnosis I had been given.  Looking back I realize now my feelings weren’t wrong but I  also realize they were formed due to my ignorance on Down syndrome and the stereotypes imparted onto me by society.

In the 3 short years that Kelsi’s been here, I’ve learned the truth- what is my new truth.  Down syndrome is a part of Kelsi but it doesn’t define Kelsi.   Kelsi is fun, determined, charming and stubborn- a typical toddler in most ways.  She loves Elmo, following her older sister around, and is a daredevil when it comes to new challenges.   I always hoped my second child would be more loving, as my first is not the most affectionate child.  I laugh now at how God works in mysterious ways as Kelsi showers our family and friends with hugs and flirts with strangers when we are in public.   At only 3 years old she strives for independence and I am fully confident she will leave the home just like my older daughter.  She’s been to Colorado, Niagara Falls, Seabrook, Disney World, Washington DC, and on a few other vacations.   Not bad for only 3!  The truth is I was wrong.  Not wrong in my emotions but ignorant in my perception of what Down syndrome is.  Emily Perl Kingley’s poem describes it best for me.  It may not be Italy where you had always planned to go but Holland is beautiful as well!
For those of you women who are pregnant and currently trying to decide if you should terminate your pregnancy, stop and take a moment.  If you landed here then I’m assuming you feel as lost as I did.  Before you travel down the path most traveled and join the 90+% of women who choose to terminate, please educate yourself on the realities of Down syndrome and don’t just believe the common misconceptions.  Most importantly, please educate yourself not from a doctor’s medical point of view but from a mother’s point of view.  Regardless of your decision, every child deserves to have someone in their corner even in the bleakest of circumstances.  I’m an open book and I’m here to help woman facing this diagnosis.  Post, email me, or call me.  But before you make the decision  to take the road the majority of women choose to take, at least consider taking the road less traveled.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I,

I took the one less traveled by,

And that has made all the difference.
-Robert Frost

Happy Birthday Kelsi!  Thank you for making me a better person- I’m so proud to be your Mommy!

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30 thoughts on “Welcome to Kelsi’s Corner | Having a child with Down Syndrome

  1. Shadia says:

    Dana, just want you to know that I was so touched by your blog. I feel proud to know you and what you stand for. What you are doing is going to be a huge help in educating other parents, both parents of children with downs syndrome and those without. God has truly blessed you with a beautiful gift in Kelsi, and on top of that, has granted you the wisdom to appreciate it. Amazing. Good luck with the blog and Happy Birthday to your baby girl!!! love, Shadia

  2. […] feel after receiving the diagnosis and thus Kelsi’s Corner was born.  Take a moment to read her story and make sure to have tissues handy.  Please take a moment to Like her facebook page and while […]

  3. LN says:

    I loved your blog. I found out recently from a quad test that I have very high elevated risks for Down syndrome. Going in for my amnio today and feel a bit lost. But it’s inspiring to know that regardless of the outcome, life and God is good. Thanks so much for posting. And hope your daughter had a very happy birthday.

  4. Jenny L says:

    Dana- just reading this now. WOW! You are an amazing woman and most of all Mother. I remember being there through your pregnancy with Kenna and then seeing you shortly after you found out about Kelsi. I’m glad you have found beauty and peace and most importantly love from such a beautiful, inspiring young lady 😉 I definitely feel and know within my heart that she is so happy because she is blessed with such a wonderful Mommy and Daddy. xoxo

  5. We just found out that my oldest daughter Nicole’s 26 week daughter has AV Channel Defect and a 2 vessel cord. The doctor discussed the possibility of Downs as well. She and her husband are in the Army stationed in North Carolina. I live in Washington State. I have been there for the birth of all 6 of my other granddaughters including Nicoles oldest..Aaliyah age 10 and Akaycia age 5. So in many ways it is so much more difficult to be so very far away. I was so touched by your story and the honesty in the words you told it with. The transparency was so refreshing. My youngest daughter who has 1 daughter and adores and idolizes her older beautiful sister said..”I just can’t see my beautiful sister with a special needs child”! Even though this seemed hurtful to those with special needs children…I understand her thoughts. I think as you stated that these special kids are born to old people..Not someone you know. My daughter is 31 years old and her husband is 29..so young but not so… Anyway I am sure that I will be on this site often and I just wanted to say Thank you sincerely for your gift in creating this page and this place…. Gramma!!!

  6. mellbugg says:

    I found your blog today. This post really touched me. It spoke of everything I have recently been feeling. We found out in May that our precious baby boy (due in October) has Down syndrome. I felt everything you described. Most of my fears were for our other son (who just turned two). I’m doing much better with the diagnosis now but still have bad days (last week was a bad week). It’s so encouraging to hear about your beautiful little girl, Kelsi. It certainly gives me hope for our future. I started a blog a few weeks ago. It certainly helps to be able to express my thoughts and feelings through this avenue. I will definitely “follow” you for blog updates. Thank you for writing about your experience(s). It is so encouraging for us mommy’s that are just starting out on this journey.

  7. Celia says:

    Dana, wow i cannot believe how much i identify with everything you wrote. I have a beautiful daughter-Gyselle, who will be 8 months July 4th, 2012, my daughter has Down syndrome and you know what I WOULD NOT CHANGE ANYTHING ABOUT HER! She has brought so much joy to my life! I use to think she wouldnt be able to do anything (like a vegetable), but i was so wrong! She has so much energy, she loves to dance, hug me and give me wet kisses on the cheek (which i just love), she is always happy laughing or making us laugh at her cute things…..well i can go on forever. 😉 May God continue to bless you and your family. We are truly blessed….i wish everyone could see that a child who has Down syndrome is so much like a typical child, but i guess thats were we come in. Thank you for your blog!

  8. […] going to teach you more than you could ever imagine!  Before you continue reading, go to this site https://kelsicorner.wordpress.com/2012/03/19/welcome-to-kelsis-corner-having-a-child-with-down-syndro… this site helped me out more than I can explain and I really cant word what I want to say any […]

  9. JPT says:

    I just wanted to say thank you for your posting. My husband and I recently found out that our unborn daughter had down’s at 25 weeks after an amnio confirmed it. I have felt everything from anger to sadness to not understanding why. My biggest concern is that I will be able to provide everything that she needs to excel and blossom – time, energy – as we are raising my husbands daughter from previous relationship who has mulitple conditions of her own. We are due in November, and I just pray that we can be strong and provide both our children with everything they need…

  10. Kelley M says:

    I wish I had your page when I got my diagnosis at 18 weeks. I agree that having my son is an absolute blessing, and if I could only talk to myself as I cried and cried almost two years ago getting that news, I would tell myself that it’s okay to cry, it’s okay to obsess and read every book ever written about Ds, but take the time to enjoy being pregnant and enjoy every second with your baby. He will be perfect in his own way, and you will love him more than you ever thought possible. We did agonize over continuing the pregnancy versus not continuing, and I am so incredibly glad we chose the path less traveled.

  11. Misdy says:

    I just found out yesterday that I am having a little boy with Down syndrome. I don’t think I have stopped crying and I feel like I’ve been hit with a truck.
    I don’t know if I should get the amniocentesis or wait? I’m 21 weeks.

  12. Daisy W says:

    Hi Dana, your blog is inspiring. We just learned the results of our CVS was positive for DS. I’m 14w1d now and we are struggling with what might happen in the next weeks. You really captured the crazy roller coaster of emotions that one goes through after receiving such a diagnosis. I suffered a miscarriage last year and thought that was the lowest I could feel. I cycle between hopefulness to full-on despair when I think about the future. On one hand, I don’t want to suffer another loss….on the other hand, I worry about burdening my two daughters with a special-needs sibling. And I also worry about quality of life for this baby. What if her case is so severe that she will never be self-sufficient? What if I can’t provide a good life for her? Am I being entirely selfish by wanting to keep her?

    I am just so confused and distraught and emotional right now. We are going to wait for the fetal echo and second trimester ultrasound before we make any decisions. A small part of me is still hopeful that all the tests are wrong. But I know how unlikely that is.

    Sorry for the long rant. It was nice to find that someone else understands what I’m going through. I hope I have the courage to take the road less travelled too.

  13. Yve says:

    Hi there,
    I just received confirmation that our 12 week old baby has DS. My head and heart are all over the place. I have cried mountains of tears, however I am pro-life and told my OB and others I will not terminate. I am terrified, I won’t lie. I would love to hear from you if you have a chance to email me. Many thanks!

  14. Katie says:

    I would love to hear from you. I’m in a very dark place on my life. I’m 12.3 days pregnant and was told that the Maternit21 came our positive for downs. I’m 45 yo and have a 2 yo son. I had a failed cvs yesterday so the want to try it again tomorrow. I don’t think I can take care of a special needs child but I’m also traumatized at the though of terminating the pregnancy. My baby is a girl. I love her so much. My husband thinks termination is the best, but I’m so scared. Scared of what the baby’s going to be like and all of the health obsicles. Just need some kind words and inside. The NT measured 5.2 at 11 weeks with fluid on the abdomen. I’m just so scared. O can’t stop crying. Please help.

    • Daisy Wong says:

      Hi Katie,

      First of all, congratulations on expecting your daughter. I know it’s hard to feel joy at this moment, but anytime a life is created, it is momentous.

      I was you about half a year ago. I was expecting my third daughter and had found out that she has Down Syndrome. My husband leaned toward termination too. But, like you, the thought of terminating destroyed me. I was terrified of what to expect too. So I talked to a pediatrician friend of mine and told her my fears and feelings.

      She helped me tremendously by telling me that Trisomy 21 is not a death sentence. As medical advances and knowledge have progressed, people with Trisomy 21 have much longer life expectancies and can lead fulfilling, independent lives. She also said that children with Trisomy 21 are the most loving children she’s ever seen. However, she advised to base my decision on what I could live with taking into account everything that would come with having a special needs child. In the best case scenario, she would be in perfect health but would still require some developmental help. She would most likely have more doctors’ appointments too. This is all time that would take away from my other two children. In the worst case scenario, she would be plagued with some of the health issues known to be associated with DS and we would have to devote time, energy and resources to overcome them, again taking away from our other two children. So, I asked her what health issues would be hardest to deal with and she said severe congenital heart defects. Short of that, most everything else is surmountable.

      Our daughter had duodenal atresia and required surgery immediately after birth. She spent 6 weeks in NICU and had to learn how to eat in spite of her low muscle tone and stridor from being intubated during surgery. They wouldn’t let her come home until she started taking in a certain amount of milk. She just came home recently and we’re over the moon in love with her. My husband, who was a bit distant during my pregnancy, is completely smitten.

      We just learned that the small VSD they detected during the ultrasound will require surgery to close it. Scary but our specialists are top-notch and I am confident they will take care of our baby again. Other than this, she is a perfect, beautiful and sweet baby.

      A lady I met through a forum gave me this advice that also helped me immensely. She is just a baby like any other baby who needs love and care. She just needs a little more if she has some health issues but otherwise, she will just be your baby. We attach stigmas to it because of ignorance. But all it boils down to is that she is your baby who will need the same love and affection that you gave to your son.

      I am so happy that I got such great advice from friends and carried her to term. It’s been a difficult journey due to all the scares along the way and the fear of the future. But every time I look at my baby girl, I know that it was all worth it and I can’t imagine life without her.

      I hope that my story helps you to make the best decision for you. Good luck and best wishes to you and your family.

  15. Dan says:

    Hello Dana,

    My wife and I are in that roller coaster of emotions that others speak of, we had genetic screening done by Progenity and our Dr. called my wife at work and told her “There is a 99% chance your baby has Down Syndrome.” Needless to say I had to pick her up from work that day. We went straight to the Dr office and she keeps saying 99% chance, and then tells us the gender. It was very bittersweet to say the least and I broke down in the office.

    We leave distraught and I start reading the paperwork and it basically says the PPV (Positive Predictive Value) is 46%, meaning there is a higher risk of our child having Downs, and their assessed risk is 99% accurate, quite misleading. Needless to say we are currently awaiting the result from an amniocentesis and they days are dragging by. I’m mad at the Doctor for calling my wife at work, frustrated by the misconstrued results, and terrified what the results of this test that is actually is 99% accurate will be.

    We are getting used to the idea of a baby with Downs, and we know things could be much worse than having a child that would likely be the happiest, most loving child around, but it’s still difficult. I would love to hear from you and I really appreciate this site you started in your beautiful daughter’s honor.

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