Cedars Story

Real life Down Syndrome Awareness

Life is Forever More Beautiful Because of Down Syndrome- a Twin Story

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My name is Jessica. My husband, Jared and I were married in 2011. We decided to start having children right away and we now have four children, Raymie age five, Kyrie age three, Nora and Jack are twins and they are eight months old. My husband and I are originally from Idaho, but we currently live in Iowa. My husband is a mechanical engineer and I am a nurse, but currently a stay at home mother. We love the stage of life we are in right now. My husband is very fun and loves to get the kids all riled up (of course right before bedtime). Jared and I go well together, I am more of the nervous, cautious type, and he is a lot more fun and relaxed. At one point we had four children age four and younger. Sounds chaotic, and at times it is, but I am always told “wow, you have your hands full”, But there’s that saying…you should see our hearts.

I went to the doctor appointment alone, it was our third baby, we knew the routine and I would show the pictures to Jared later. During the ultrasound, I thought I saw two sacs, but I instantly put it out of my mind. There was NO WAY I would have twins. Well, the ultrasound Tech told me otherwise. I instantly started to cry. Ugly cry. I didn’t see this coming. We were thinking three MAYBE four children. But, God had a different plan for us. The Tech told me to go use the restroom so that she could get a better look at it all. As I was in there, I remember giving myself this pep talk that wasn’t so peppy in the mirror. It consisted of a lot of, “no way this is happening” and “is this really happening”. As soon as I was done with the doctor’s appointment I called Jared to tell him the news. He didn’t believe me, at all. In fact, his exact words were “yeah, well we’ll see”. You have to know my sarcastic and humorous husband to know that this was really funny that he didn’t believe me. I didn’t believe it myself. The rest of the pregnancy went really well. No complications, all ultrasounds (three or four of them) looked great. I was HUGE.

Twins and Down syndromeThe delivery had gone so well. I was induced at about 6am. The babies came easily with no C- section. Nora was born at 11:29am and the first thing I said was “Awe, she’s beautiful”, as they whisked her away to be monitored and checked. Jack came six minutes later at 11:35am. The pediatrician came over to talk to me about the babies and said, “The boy looks good, but we have some concerns about your girl. We believe she has Down Syndrome.”

 

She handed Nora to me and said, “See her almond shaped eyes, her lower set ears, this line on her hand?” I remember the way I felt, but it’s hard to describe. We were still in the OR, (that’s where we had to deliver, just in case we needed an emergency C-section). I wasn’t mentally, let alone, physically stable to receive this type of information. You know that heart sinking feeling you get, I believe it was that. The look on Jared’s face as soon as they told us is burned into my memory, left there as a scar forever. It wasn’t a bad look, or a sad look. It was a look of shock that I can’t seem to get out of my mind. They then rolled me and Nora to our room, while Jared walked next to Jack. I believe we sat in our room for 30 minutes without talking because so many nurses were in and out checking/testing the babies. The nurses would duck in and out, quickly and quietly doing their work. The word was out. The girl that had the twins has one with Down Syndrome. As they would leave I would burst into tears and try to quickly recover as soon as they would come back, even though I knew they knew and my face was swollen and red from the tears and crying. I wasn’t trying to hide Nora’s diagnosis; I just didn’t know how to react yet. And the only way that came to me, was tears.

Twins and Down Syndrome

Jared texted family and close friends during this time and was looking up some information on Down Syndrome. The first thing he said, when we were alone, was “They live for an average of 60 years.” I know that sounds morbid and I’m sure he was looking up other information as well, but I proceeded to cry as he comforted and reassured me that this is something we can do. Jared is a lot stronger than I am. I had told people about the day I was getting induced. A good handful of people knew the babies were coming that day. I’m sure there were a few people wondering what was going on, they knew we had had the babies but had heard nothing. I felt like I had to give everyone answers and updates right away, but I couldn’t even do that for myself.

Related Post: Two Beautiful Babies: One Diagnosis

The pediatrician came into the room a little later and said, “So, do you have any questions?”, as if she gave me a whole packet of educated information about it (which she did NOT). I said no. But I think about it now and I’m angry. I’m angry at that pediatrician for not telling me anything about Nora’s diagnosis or the resources to get Nora the help she needs. As soon as the pediatrician pointed out Nora’s Down Syndrome features, I couldn’t stop seeing them. I wanted to be able to see my little girl for who she is, not for her diagnosis.

That second that I got to see her and call her beautiful before I knew of her diagnosis; I will cherish forever because I loved her and saw her beauty before the diagnosis. My friend Jessica said it perfectly, “You’re mourning the loss of the child you thought you were going to have.” I imagined having two little bright blonde babies running around, causing trouble and I didn’t think I would have that. I feared not knowing how our lives would be from here. I didn’t know what to expect as far as what Nora would be able to do or not do.

We let the kids come to see the babies and it was adorable to see them love them instantly, without any knowledge of the situation. We were released from the hospital, and unfortunately, with NO information or informational packets about Down Syndrome. Days later we were back in the hospital with Nora because of a kidney infection/UTI. Later come to find, due to Hydronephrosis. Luckily, they let Jack and I stay too so that I could feed them both. A month later, we were in the hospital again, this time for RSV. Which, at the time was a blessing in disguise. Because of the RSV we went to The University of Iowa Children’s Hospital and there they made sure we were taken care of. Nora got all of the tests she was supposed to get immediately after birth and more. We are very blessed that Nora has not had any serious health issues and she has a healthy heart, but we didn’t know that until Nora was about two months old.

 

Related Post: Twins Luca & Giancarlo: Down Syndrome diagnosis

At times, it’s hard not to compare Nora to her twin brother, Jack. But I believe Jack was sent here with her to be her protector. Nora is one tough little girl and is very easy going. She is currently sitting up and baby talking a lot. She loves to sit and watch her siblings be crazy and interact with everyone around her. Nora loves to be tickled and giggle. She loves diluted juice and eating baby food, maybe a little too much. We currently do physical and occupational therapy about three times a month and she doesn’t love it. She gets real mad when they try to make her move in a way that she doesn’t like. She has a bit of sass in her.

Nora has changed our lives for the better. She has been such a light and joy in our lives! When she looks at me, I feel as though she already knows me and my soul. Nora has brought out a side of my husband that I have never seen before and I love it! She brings a soft and gentle side to him that only she could have done. She has also helped me to reflect on the way I teach and parent my children. Everyone instantly loves Nora and she can make any one happy just by smiling at them. She is definitely a little social butterfly. We are so very blessed to have Nora in our lives and I am grateful to my Heavenly Father for letting Jared and I raise her. Life now, and forever, will be more beautiful because of our little Nora.

Related Post: Adult Twins (one with Down Syndrome)

 

Jessica and her husband live, love and laugh with their 4 beautiful children.  The family resides in Iowa.  Be sure to follow along their adventures on Instagram @Jessica_Hendrickx

Daycare and a Baby with Down Syndrome

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As this is not my area of expertise, but many moms face going back to work and finding appropriate care for their little ones with Down Syndrome, I asked our community of friends on Instagram to share their experiences of having a child with Down Syndrome and utilizing a daycare center.  Rachel, a beautiful mama to Isla and Sullivan, works full time and has had a fantastic experience with her current daycare center.

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Down Syndrome Diagnosis in a First Time, young mom

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Down Syndrome diagnosis first time mom

Down Syndrome diagnosis in a first time mom, it is an  anomaly that can occur in any pregnancy regardless of age, race, culture or socioeconomic status.  Though it is true that the incidence of Down Syndrome rises for older mothers, that doesn’t mean that young mothers are unable to bear a child with Down Syndrome.  When a mother, especially one under the age of 25, finds out she is having a child with Down’s Syndrome, that Prenatal Down’s Syndrome diagnosis in a young mother often becomes a huge shock.

The beauty of Taylor’s story, however, is her embrace of the diagnosis and the life she and her family lead with little Treg as their tour guide.

 

Here is Taylor’s story:

 

I remember that my husband and I were sitting in a room for our 20 week check up. We were talking to the doctor about why we got charged $2,000 dollars from a lab company for blood work, after all, we had denied all testing.

 

But at about 16 weeks a nurse came in and took my blood. We asked her why and her response was “its routine, we need to check your blood type, and send all your blood work information to the hospital for delivery.” Somehow my blood work got sent in for quad testing. (Now I thank God that it did, he truly has a hand in every detail of our life).

 

 

“Look, guys, I know you were wondering about the bill from the lab company, but it’s pretty much mandatory we do these testings now…. and listen we got the results okay? And, we need to discuss what was found…

 

You got a positive result for Down syndrome on the testing. How it works is that it takes your blood and factors in a bunch of information about you, and if one thing is wrong, like the conception date, it can mess the whole testing up. I’m sure it’s okay, he won’t have it okay? You are so young, the possibilities are like none.”

 

I stopped hearing at this point, I was focusing on holding back my tears, I could hardly breathe, the room became really small, and I just couldn’t breathe.

I wanted to shout at the doctor to shut up and leave. What was he even saying at this point? At least Jordan was listening (my husband).

 

Then it dawned on me…Jordan is still here… I looked up into his eyes, “Sorry” That’s all I could say. I was so sorry. I wanted to give my husband what I thought was a “perfect baby” and I failed, so over and over again, I just said, “I’m so sorry.”

“Don’t cry okay? Your baby won’t have Down syndrome, everything is okay. I can offer you another non-invasive test, but I really don’t think you need it, this will just give you peace of mind.” So I immediately got my blood drawn for cell-free DNA testing.

Related Post: Young Mom & a Down Syndrome Diagnosis

For being so young, I am only 24, 23 when I became pregnant with Treg, it was surprisingly very hard to conceive. Month after month I found myself heartbroken.

 

We wanted a baby so badly. Then one month, my period was late, and I had never been happier about it. A week or so went by and I was lying in bed with my husband. I felt something wet and looked down and there was a pool of blood beneath me, I screamed and sat on the floor, “something isn’t right!” I was crying now “something is very wrong!” I finally peeled myself off the floor, scrubbed my sheets clean, and threw them in the washer.

 

My dreams were crushed. But a few weeks had passed, and still, I hadn’t really gotten a period. So I used one of my old pregnancy tests from the month before.

 

It was positive.

 

I couldn’t believe my eyes, so I took another. I drove about an hour away from our house to where my husband worked, I handed him one of the SIX pregnancy tests I had taken. I had never felt joy like that. He couldn’t stop smiling. I thought my baby had disappeared, but he was pure magic. Somehow he survived.

 

So those were my thoughts when the positive results came back for the cell-free DNA testing. The doctor called and told Jordan because I was at work. Jordan said to me, “Tay I think there is a good chance our little boy is going to have Down syndrome.” But I had my magic baby, and that’s all that mattered.

prenatal down syndrome diagnosis in young mother

People often ask me “what would you tell yourself then, when you first found out, that you know now?”

 

But I don’t think I could have told myself anything different. I think my reaction was human. I think everybody needs time to heal and feel their emotions. The only thing that could’ve changed is actually meeting Treg.

 

The moment I met Treg, I met the purest truest love of my life. He is my son, not just a baby with Down syndrome. Most days I don’t even think about Treg having Down syndrome. He is just my baby, and I am his mother. There is nothing weird, or uncomfortable or awkward about it, and that’s what I wish I could have let myself know, or feel I guess you could say.

Related Post: Beautiful Baby Lemonade

 

I don’t feel different than any other mother with a typical child. I cry during the tough moments, I celebrate our success. They might just be harder to reach than the typical child, but they are magnificent and that much more fulfilling when they do come.

 

Treg has truly been such a blessing he is doing tremendously, and partly due to early intervention he is crushing all his milestones right alongside the typical child. Although it is crazy to think of how young I am, to have a child with Down syndrome, and Treg being my first at that- I am thankful for my circumstances. I am able to keep up with Treg, play with him, and go above and beyond tending to all his special needs, therapies, doctor visits, etc. I’m just like any mother, I am full of love and pride for my child.

prenatal down syndrome diagnosis in young mother


 

 

Taylor is a 25-year-old mother, who is a makeup artist for Lancome. Taylor married her sweetie 4 years ago and Treg is their one and only child. Taylor and her family live in Houston. The family spent 1 month in the NICU with Treg where he struggled with oxygen, and learning to eat without a tube; before they finally took home their bundle of joy! Treg is a smart, curious, and wild almost 11 month old. He is the center of joy in the Wheeler home!

You can find Taylor blogging at ridingathreewheeler.blogspot.com or on instagram as @Thehouseofwheeler

 

 

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Down Syndrome on the Mission Field: A Missionary’s story of a Birth Diagnosis

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Missionary Down Syndrome

I first met Becky and her family years ago, it was a brief meeting and one that I had no idea would mean that in the future we would share a connection deeper than most mothers.  You see, Becky is an American missionary to Ivory Coast in Africa and she and her husband have a daughter with Down Syndrome.  This is not something I gave much thought to years ago when I first met her lovely family during a church visit.  However, time changes things.  I timidly reached out to Becky after the surprise birth of my son, Cedar, to let her know that we had this deeper connection.  I say timidly because I now feel guilt that I did not reach out to her more warmly and lovingly the few times our paths crossed when she visited the states with her family.  Her daughter, Morganne, is a beautiful soul, but back then, I still did not know exactly how to interact with or engage someone with Down Syndrome.  I didn’t understand.  Now I do.

I reached out to Becky as I didn’t know her story, I only knew her daughter’s name and how to reach her.  My church has been privileged to be involved in the ministry of Becky’s family for years, but I didn’t know this mama’s personal diagnosis story.  She was lovely, graceful, and kind and here is what she shared…

My name is Becky and I live in Bingerville, Ivory Coast.  The Ivory Coast (Cote d’Ivoire) is a sovereign country in West Africa. I came here to Africa after marrying my husband in 1991. The first week that we met, he told me that he was 26, did not date for kicks anymore, and he was going to be a missionary in Africa. So, I knew where I was headed if I married him.
Even though I did not feel special enough to be a missionary, I was willing, and I found that was all God was looking for in me. I have loved being married to my husband and living here in Africa. My role is defined, first of all, in learning daily to love the Lord through serving and helping my husband in the ministry.
 I found out in the delivery room here in Abidjan that Morganne had Down Syndrome. I had no idea as nothing showed up in any of the preliminary diagnostics. It was a complete shock, and I could not even remember the name Down Syndrome when I first saw Morganne!
 Immediately upon seeing Morganne, the nurses took her to start working with her. She was not breathing well and was blue. She was at a table not far from me, and every time my husband looked over at them while staying by my side, they would look down and not look him in the eyes. He knew something was wrong. Finally, they came by and showed the baby to me, not saying anything, and then took her away to put her on oxygen. I knew when I saw her face something was very different. I asked Bob, and he said it will be ok.
We then had to be persistent to find out what was wrong. Here in the Ivory Coast, the doctors assume that the patient and loved ones will not be able to deal with bad news. For this reason, the doctors will not tell you the real problem. They knew something was wrong, but they only said that they would do some tests. Finally, the doctor came to see us. It was then that he told us that he was not sure that Morganne would live, and that there seemed to be a problem with her heart.

 Related Post: Showing the possibility with Down Syndrome in Tanzania

The doctor seemed so discouraged and we felt truly sorry for him. Still, they could not tell us what was wrong. I would say the way it was presented was quite negative, but they as well were unsure of all that was involved.
My initial reaction was fear. I felt overwhelmed trying to raise a child who had a heart problem and so many other obstacles to overcome. I remember I cried the whole first day of her life! I had never known anyone with Down Syndrome before this point.

I always shied away from those with disabilities and so now I found myself wondering if others would do the same with my daughter.

 I did worry about what others would think. I always struggled with what people thought of me anyway.

 Related Post: Down Syndrome in South Africa

My biggest obstacle to acceptance was how to raise a child with Down Syndrome in a foreign country. I had no idea of what lie ahead and what was available here.  Here in Ivory Coast we have a huge difference between the poor and the rich. Most people here are poor and are not able to really take care of the health problems that accompany this kind of a diagnosis. So, they live and stay mostly at home and help around the house as they are able. There is a school for disabled children in Abidjan, but the school was not really a place where we were ready to leave Morganne each day.
 
I have found though that people are very kind to Morganne. They can tell that something is different and it has truly opened doors for us to show Christ’s love. They feel that life is so much better for us as Americans,….but Morganne shows them we hurt at times too. I have also met some people recently who are trying to use sports to help children with special needs. This was great to see as overall most people here do not have much knowledge of how to help or educate these children. I would love to have a Sunday School class for them one day….but I need help!
When she was born, Morganne had a hole in the middle of her heart at birth that had to be corrected with open heart surgery at 6 months. (atrio-ventricular canal).  My pregnancy was much like my earlier two, so I had no cause for concern. Everything seemed so normal.  My labor started and stopped two days prior to the actual due date. I was so thankful to have my mom here to help and watch the older two children. The day of labor was very long, much longer than my first two. Once in the hospital, they could not find a heartbeat, so I had to have a monitor hooked up to watch. The labor was very hard and slow and later my Mom wondered if the Lord was helping Morganne as she did have a hole in heart! My husband was a tremendous support to me. At first, we were grieving terribly at what we thought was our loss, then the Lord reminded Him He had given us a life, and we needed to fight for her. Morganne’s health was precarious for several months leading up to and after her heart surgery. The very day she was born, God gave him this comfort and he has truly fought for her ever since.
 I was very torn that first day after her diagnosis, in realizing that we would never be alone as a couple after all our other children were grown. For some reason, this was the hardest thing for me to accept. As we began working through all of the details in her care, I saw how perfectly God had put us together for Morganne. Bob began working hard on a medical journal for her, keeping track of everything that she had done and what was ahead to do. I began attacking Physical Therapy, Occupational Therapy and Gross Motor skills. I feel Morganne has kept us closer as we have had to work as a team.
For my two oldest children I would keep a baby calendar of stickers indicating when each smiled for the first time, rolled over, sat up, etc. I soon realized that I could not keep such a calendar with Morganne. She was not going to be ” on time” according to other people. This took a long time to accept.
 
Among the books that I started reading, many said to just enjoy Morganne as she was and have fun with her. This was very hard to do with so many medical issues involving her heart and therapies, etc that needed to be done. I felt I was always trying to fix her. Yet, Morganne kept her own pace, loving and laughing with everyone around her. I remember God’s Word was a huge comfort to me during those first few months as I read over and over that He is my strength. The first few weeks we made a choice mentally that this was a child that God had given to us, a life , a blessing.
As we moved forward in this choice, God gave us an overwhelming love and joy in caring for her. As each new phase of sickness or problem has come, I have just gone to Him with all of my fears and frustrations. The first week, when we almost lost Morganne, gave me a chance for my heart to catch up with my head in acceptance and love. I would say that this was a turning point for me when I begged God to let her live……I knew I loved this new little one and we have been fighting ever since to love and help her the best we can. All of our family has been very supportive, encouraging and so helpful!
Our lives have truly been blessed by Morganne. There is work in taking care of her, but she brings joy to our family. Her humor is contagious and she had truly taught us how to laugh and enjoy the simple things in life.  Morganne is now 20 years old!!
Becky is a homeschool mom and the wife to a pastor who is her best friend.  The family lives in Bingerville, Ivory Coast. Becky serves in the ministry to ladies, young girls, and children.  Becky plays the piano for church services and helps her husband in any capacity needed. Since returning home to Africa in this last term, she has had many visitors to either teach in the Bible College, see their mission field, or help in medical missions. You can usually find Becky busy trying to be a good hostess to those that God sends their way. (either American or Ivorian pastors, and many others)….She always tries to remember that even a smile at a little child or a cup of water….is very important.

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