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What Does it Feel Like to Find Out Your Baby has Down Syndrome?

12/31/2016

34 Comments

 
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​It feels like the air just got knocked out of you.

 It feels like the tears won’t ever stop.
It feels like someone took all of your joy.

 It feels like no one will ever understand.

It feels like you are alone.

It feels like you don’t know this new little life you have grown.

It feels like fear.
 
Fear is the word that describes it most accurately. 

There is fear of the unknown, fear of the future, fear deep seeded in wondering what your life will now be like.  Fear that wraps you like the swaddling blanket you had prepared for your very new and perfect precious life.  Fear that you will not be enough. Fear of rejection from the world.  Fear of sharing the news with family and friends. 

It is a very hard and lonely place to be, I know because this is exactly where I found myself when I gave birth to my son.

It all began 9 months ago when I was elated to learn that we were expecting our 6th child.  I enjoy the chaos of our large family, we never started out planning a big family but each child brings so much joy to our home that we welcomed each and every one of them.  This last child was a bit of a surprise, not because I don’t know how babies are made (though there have been many who have suggested that when they see how many children we have) but because we were getting older and it had been 2 years since our last was born and there was no sign I would be having another.
Once I learned our news, I did find myself wondering if I was going to be able to keep up with the home, the children, homeschooling, our farm, gardening, all of it, but I just figured life would work itself out, it always does. 

My pregnancy was uneventful with the exception of an ultrasound scare…I say scare because an ultrasound tech had told us that she had some concerns that she wanted to refer us to someone else for.  Something along the lines of club feet and hands and wanting to be sure there were no other issues with internal organs… as they were not clearly visible on the ultrasound.  I was scared to death.  I cried a lot and prayed a lot.  I let God know that I just couldn’t handle a child with special needs; he had already blessed us with 5 healthy children.

 I couldn’t do special needs.

We went to that level two ultrasound and I lay back while a complete stranger ran a Doppler back and forth across my round belly.  She pointed to the heart, the kidneys, and the perfectly formed little hands and feet, tears of relief fell down my cheeks.  My little one was perfect.  We were told that all the organs looked great and there did not appear to be any cause for concern.  I felt so much relief wash over me when I realized that we wouldn’t be called to be the parents of a special needs child.  I thought that is what happens to other people, not to us, I just didn't feel prepared for that.  We declined any other tests because, though I didn't feel I was capable of dealing with special needs, I also had no plans of doing anything but giving birth to the child God had given us.  

Armed with the knowledge that our homebirth plans wouldn’t be hampered by any medical issues we proceeded planning for, and anxiously awaiting our little one.  He moved and kicked a lot, especially when I caressed my belly, and my little ones talked to my belly.  He moved and kicked so much that he couldn’t decide which end was up as he continuously flipped breech and then vertex and back again.  It seemed like a game he was playing and we joked that this one would definitely be a firecracker like his siblings.

The day came when every woman knows that meeting her new little life is imminent and once again this little one had a surprise, he decided to be born breech, during our planned homebirth.  All went very smoothly and looking back, I realize that God was giving us another gift, the gift of precious time to process.  When my husband and I began admiring our new little one we noticed a few things that were unique about his appearance.  We asked our midwife a few questions and she smiled and nodded that she too noticed, I just knew that we were wrong though…

A few days later at our very first pediatrician appointment my husband and I asked the pediatrician for her thoughts, she smiled and kindly told us in a soft voice that our son had Down Syndrome.

 I couldn’t stop crying.

The next few days were a whirlwind of crying, not sleeping, more crying, and praying.  We met with a cardiologist at the urging of our pediatrician and were told that our son was very lucky to only have a minor Atrial Septal Defect and PDA that may well close on its own. 

My husband, an RN, was elated.

I was having trouble processing the words.

There was a blood test done to confirm the diagnosis of Down Syndrome and I was still holding out hope that everyone was wrong, I was still in a bit of post-partum denial. His blood test confirmed that he had Down Syndrome, I cried some more.

I didn’t want to talk to anyone…because I didn’t want to cry any more.

It is a very strange place that  I found myself in, I am normally a force to be reckoned with and I didn’t want to tell anyone what was going on because I wasn’t yet at the place where I could talk about my new baby without crying.  What kind of mother did that make me that I couldn’t look at him and smile without that smile being accompanied by trails of tears?

​It all felt so wrong to me because by crying when I spoke about him I worried that people would feel sorry for us, that they would think I didn't want him, I detested the thought of anyone feeling sorry for us or misunderstanding my tears.

I also felt that people we told would take their cues from my husband and I, and here I was a blubbering, sleep deprived, hormonal mess.  Not what I wanted anyone to see.  I wanted people to treat us like we just had a baby, not like there was a problem.

I wish I could have told myself that it was going to be okay.

I wish I would have inherently known that my smile would return and my tears would slow.

I gave my husband the burden of telling our family, friends and church what was going on, I just couldn’t do it. 

The outpouring of support has been amazing but more than that, our new little one is amazing.  I worried that I wouldn’t bond with him like with my other children, I have no idea why that thought was allowed to cross my mind, but it did.

It was a waste to worry about that, as the days went by and I got more sleep, the hormones calmed down a bit and I began to process everything. I began reading story after story online of families who found themselves in exactly the same place we were.

They were all doing well. 

They had beautiful children and their children were pictured doing normal everyday things.

There was an echo of words that, though ordered differently in each story, said…

I wish I could go back to those first few days and tell myself that this is not something to mourn but instead it is something beautiful.

This gift is the one that I never knew I wanted, until I got it. 

You haven’t lived until you have had someone with Down Syndrome touch your life.

Surely all of these women and families weren’t lying.

This is when I chose to begin learning everything I could about my son, his diagnosis, and others like him.

So, what does it feel like to learn your child has Down Syndrome?

 It feels like fear…

But, on the other side there is hope, beauty, and the most plentiful baby smiles I have ever seen.  There is camaraderie among mothers you didn’t even know you would seek out.  There is a sense of understanding of others and a new passion to make the world an even better place so your child can live abundantly in it.
​
And the tears do subside, because there is no reason to mourn when you have something so beautiful for the world to meet.

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34 Comments
Rosemary Carr
12/31/2016 11:12:05 pm

You will be a wonderful mother to your newborn. Dawn you have the strength and patience. You are special as well as your child and children are.

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incidentalfarmgirl link
1/1/2017 07:00:56 am

Rosemary, thank you so much for all the kind words, they mean so very much!

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Roxanna Quinn
1/1/2017 02:08:37 am

Thank-you for sharing your experience. I remember feeling all those same feelings. I waited two weeks to tell anyone outside of my immediate family. It wasn't long, though, before I fell head over heels in love with our baby girl and the rest is history!

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incidentalfarmgirl link
1/1/2017 07:00:12 am

Roxanna, it is so hard at first, I thank you for chatting with me in those early days, just meeting other mamas makes it feel less lonely.

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Kathi
1/1/2017 09:14:22 am

What a poignant story, Dawn. God knows you are the perfect mother and the perfect family for this child.

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incidentalfarmgirl link
1/2/2017 02:56:36 pm

Thank you Kathi!~

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Deborah link
1/1/2017 09:45:19 am

Such a beautiful, honest post. I'm sure God will use you to be a help and support to other moms. Thank you for sharing.

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incidentalfarmgirl link
1/2/2017 02:57:11 pm

Thank you for taking the time to read and comment!

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Candi link
1/1/2017 10:30:26 am

Oh Honey! I can not imagine what you have been through. Sending love and prayers & tears for you. I love you and your willingness to share. Many will be blessed.

We are praying for you and your sweet family. God is faithful. God is good. In Him we find our strength.

Sending a hug,
Candi

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incidentalfarmgirl link
1/2/2017 02:58:06 pm

Candi,
Thank you for your sweet words, prayers are always appreciated! God is good, you are so right.

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Michelle link
1/1/2017 10:40:22 am

That was such a touching post! I hardly know what to say, but I'm glad you have found support. I believe that God thought that you were the perfect family for that special little person. There will probably be many to come who will find comfort in what you have shared.

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incidentalfarmgirl link
1/2/2017 02:58:47 pm

Michelle, I appreciate that and that is my hope that some other mama who finds herself in the same place will know that she is not alone.

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Heather
1/1/2017 11:32:53 am

That was a beautiful and well written post! I don't know much about DS but I do know about ASD and VSD. Parker's hole will never close. We have a great cardiologist if you need one.

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incidentalfarmgirl link
1/2/2017 02:59:37 pm

Heather, thank you, so far we love the cardiologist we have and we are hopeful that our little man's hole will close, praying for miracles!

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Nadine link
1/1/2017 11:57:19 am

Hey Dawn. Thanks for sharing this! So incredibly brave to share what is so vulnerable a moment for you. I hope that you find, as I did when sharing about loss in our lives, that a new community forms around you, one that understands your heart because they have walked a similar road; one that truly understands your ups and downs. I'm also a special needs mama and these kids are amazing. Their challenges bring us to new places and situations, constantly learning and growing. And they see the world in a different way which has taught me more than any other life experience so far! Bless your sweet family and your beautiful child.

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incidentalfarmgirl link
1/2/2017 03:00:26 pm

You are so right, I am already finding that my new little one is opening my eyes and he is so amazing. Thank you!

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Deana
1/1/2017 12:58:14 pm

The most beautifully written tribute to your son. I am so glad you shared. He is truly blessed and loved. God placed him in the perfect family. Love and prayers.

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incidentalfarmgirl link
1/2/2017 03:00:58 pm

thank you for your sweet words and prayers!

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Libby
1/1/2017 07:37:49 pm

Thanks for sharing your heart and the beginning of a beautiful story. You are both wonderful parents!

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A Mama's Story link
1/1/2017 09:54:51 pm

I absolutely love this, Dawn!! What a beautiful, beautiful story of God's blessing. Your son is so handsome and I can't wait to learn how God plans to use him in His story. <3

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incidentalfarmgirl link
1/2/2017 03:02:24 pm

Thank you, I may be a bit partial but I think he's pretty handsome too!

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Sarah
1/1/2017 10:41:13 pm

Thank you for this. Thank you for showing me how great our God is even during our most difficult times. I read your post early this morning. Throughout the day, I've felt this feeling of joy heavy on my heart. I know that God has given you this beautiful baby because you are amazing. But, hearing that from people and knowing it are two different things. I would just ask you to look at the daughters that you are raising. Think of the pride you have because they are both so sweet, kind and conscientious. They are that way because of YOU! God trusted you with each of your children and saw that you were so good at this raising children in His image thing that he decided this new baby would be perfect for your family! God knows you are an ace at all this motherhood stuff, and He saw that Corey is really good at this fatherhood stuff, and he saw each of your children are really good at this family stuff and he just knew this was this baby's place. I have this joy on my heart because I know that your baby gets to be a part of an amazing family and he's going to be such a blessing for you! I just know it! Praying for you to find a peace that passes all understanding and a joy in your heart that will replace all doubts and fears!

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Michelle link
1/2/2017 09:36:04 am

Dawn, thank you for sharing such raw, open, beautiful feelings. You are indeed the God-appointed, most perfect, wonderful mother for your new blessing. He is indeed a very blessed young man who I am certain will touch so many lives in beautiful ways.

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incidentalfarmgirl link
1/2/2017 03:01:45 pm

thank you, and you are so right, I cannot wait to see what God is unfolding.

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Krista Carson
1/3/2017 01:34:28 pm

I feel as if I wrote this myself. My Ella was born 8yrs ago and went through every emotion just like you and felt guilty. Welcome to this beautiful journey.
PS we have adopted 2 more little girls specifically because they have DS. "For I know the plans I have for you," declares the Lord " plans to prosper you and not harm you, plans to give you hope and a future." let God use you and your new adventure

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Tara (Rambo) Vinson
1/3/2017 02:49:26 pm

This post is beautiful like your sweet boy! Thank you for allowing God to use your honesty and transparency in such a real way! Praying for you in the days ahead!

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Krista Hunt
1/3/2017 03:49:54 pm

Thank you for being so open and honest about the feelings you felt. I know and love a few little ones with Down Syndrome and I am better for it, looking forward to seeing your little guy grow even if only through photos. Congratulations to your family!

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Danielle Tipton
1/3/2017 07:07:16 pm

Dawn: Wow! That is the first word that comes to my mind after reading this. You are going to be an amazing mom to your little man! I always say God gives special needs to certain families and yhe has chosen you. Mark my words as he grows he will put more smiles on your face then any other child has. I am looking forward in watching him grow and seeing the contagious smile he will have on his face. I am so proud of you and your family for the willingness you have to share your story.

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Pam Link
1/4/2017 11:22:42 am

Dear Dawn, Your new little boy is adorable. He will bless your family like no other. Thank you for sharing your story. I have a neighbor with a Disabled child. She was born with a cracked Chromazone and the family was told she wouldn't live a day, then a week, then a year. Well she is now a adult in her 40's? She walks the neighbor hood visiting friends, and listens to music. She's so sweet. She lives in a dream world and had a big crush on my son, she visited often. I helped at church with a Special Needs class. I loved it. They had so much love to give and I gave it back to them. What a blessing it was. Life will be different but you will see how this little Miracle will bless your life. Love you, and Prayers. Pam

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Rachel Thompson
1/4/2017 05:44:15 pm

Dawn, you are excellent at conveying your thoughts and feelings. What beautiful words you have chosen. We are so happy for your new bundle of love ❤️ and look forward to the day we get to meet him 😃 --
Love,
Rachel

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Mandy
1/4/2017 10:29:57 pm

Dawn, this has touched my heart in so many ways. In part because I know you and your family and the place you have in my heart is knit so tightly that my heart just aches to know that you have hurt through this, and in part because I DO know that you and your family are beautiful through and through, and your beautiful son will only reflect that love over and over though his blessed, beautiful life. You will bring each other joy, and that will bring joy to those around you. You have enough Love, enough strength, and are in every sense "enough", because our loving heavenly Father will supply every step of the way. I am looking forward to meeting your beautiful blessing, and hearing how a natural breech delivery went, (ouch?!) You are a poster child for the Beautiful-Natural-Wise-Loving-Strong-Mom we all aspire to be. I love ya!

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Abby
1/5/2017 03:22:59 pm

D- This is so beautifully written and honest. God knew what he was doing; you and Corey are some of the most solidly faithful people I know. You are the most perfect parents for that little boy. Prayers always for and with you. Love, Abby

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Racquel
1/5/2017 05:50:17 pm

You are loved and you are a strong momma...I hope our memory verse this week helps - Therefore do not worry about tomorrow, for tomorrow will worry about itself. Matthew 6:34 - God knows and He will always be there for you and your sweet family...Lots of Love

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MckinneyVia link
5/24/2022 02:08:18 am

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