Though this blog is called “Cedars Story” you will most often see stories from new parents the world over who have learned that they are going to have or have just given birth to a child with Down Syndrome. I feel that all of these stories are so necessary because we need to feel a sense of community.

However, if you follow us on social media either on Instagram or Facebook you will also see TONS of photos of sweet Cedar, the reason this site was launched in the first place. Many have asked that there be more of him on the site as well…so here it is. I am going to try and give weekly rewinds about Cedar and what he is up to as well.

Let’s start here, this week in review…

Cedar has become quite the master at scaling the heights of our stairs. We have to really stay on top of it though because if anyone leaves the baby gates that keep him safe in the livingroom open, he makes a beeline to bolt towards one of the exits and more often than not he can be found scaling the stairs. With 6 kids in this house you can imagine how often one of the other littles accidentally leaves a baby gate unlatched. Yup, this is a constant process.

We have noticed in the last couple of days some new skills emerging from Cedar, he has started putting hands down and standing in a sort of triangle with his butt in the air and hands and feet on the ground, each time anyone sees this we clap and cheer and I also usually go to him and help him into a standing position so that he realizes he is well on his way to being able to do this himself.

I was gone this week for a whole day (a rare occurrence for this homeschooling mama) and I got an excited text from hubby (my stand in) saying that Cedar had started signing “no” in typical 2 year old fashion, that has become a favorite word. He has begun signing “no” at almost every meal when we ask him if he is “all done”

Currently Cedar’s favorite thing in the world is to watch “Super Simple Songs” on youtube and he will literally stare at the t.v. for an hour if I let him. I have a little mom guilt about allowing screen time but at the same point, at least it is all educational and I am hopeful that he is picking up things like colors and shapes that are often sung about in the nursery rhymes. A second favorite is of course Rachel from “Baby Signing Times” though I don’t let him watch this without someone else in the room because I am always a little concerned he will pick up a new sign and none of the rest of us will know what he is trying to say.

We had a good day this week with combined Physical and Occupational therapy, Cedar met one of his goals which was being able to put a shape into the correct hole on a shape sorter. This is difficult for Cedar because it is a fine motor operation and I often see him try and then get quite frustrated because his fingers just don’t yet have the dexterity to do the job. This week he got the circle in the hole though!

We rounded out the week with a Saturday morning haircut, Cedar has been getting his haircut since he was 5 months old and I still had to hold him in the chair because he couldnt sit up solo yet. He has always done really well with trims.

Lastly, we finished up with an activity that our 4H group had at a local bounce park, Cedar loved every minute!

See you next week when we do a Cedar Saturday in review!

(and if you just can’t get enough follow our 24 hour stories (that’s the little logo icon on our Instagram account) Guaranteed to make you laugh daily.

I remember well the first time I saw it, it was a speech given by a self confident man dressed in a suit and tie before the members of the United States Congress. This man was eloquent, self assured, funny and he just happened to have Down Syndrome. What has resonated with me since viewing this clip on Youtube was the statement that he made, “I am a man with Down syndrome and my life is worth living.” Who is Frank Stephens, a man with Down syndrome pushing the limits.

I don’t know if Frank has any idea of the impact that he is having on families raising children with Down syndrome today, but at least for me, Frank Stephens represents hope for a brighter future. There was a time just 30+ years ago when parents might be given the diagnosis and then offered to let their child just go to a facility and forget about them.  

There are daunting statistics as mentioned by
Caitrin Keiper in that article from The New Atlantis.
“the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent.” In Iceland, nearly every fetus with the condition is killed. CBS News reports that “the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it’s 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity––and Down syndrome is included in this category.”

There was a very dark time in our nation’s recent past when we routinely were told that those with Down Syndrome would amount to nothing, they would not walk, they would not talk and a family would be burdened with their care.

Frank Stephens does not look like a burden to me, in fact, he looks like a young man I would love to meet as he is funny and has quite an amazing outlook on life.

I appreciate knowing that I am not the only one who believes that the tide is turning for individuals like my son. Caitrin Keiper writes in The New Atlantis. “In many other ways as well, a child born with Down syndrome today has brighter prospects than at any other point in history. Early intervention therapies, more inclusive educational support, legal protections in the workplace, and programs for assisted independent living offer a full, active future in the community.”

Frank Stephens is living proof of that as an actor, model, screenwriter and spokesperson for those with Down syndrome. He has even been the love interest of Rachel from the Born this way Cast. He has been introduced to some pretty important people by former President Barack Obama (with whom he had dinner at the white house) and his message, as given in an interview to Global Down Syndrome is a powerful one…

“I really want people to know that my life is worth living. As recently as this year, a Nobel Prize winning scientist, Richard Dawkins, expressed the opinion that it is “immoral” to have a child with Down syndrome. He said he believed that our lives bring more “suffering” into the world than “happiness.” I just don’t know what rock he has been under for the last 50 years. We no longer lead the short, unhappy lives in institutions that he seems to imagine. I really am the “Actor, Author, Advocate” that is described on my business card. I speak to over 50 audiences a year with a motivational message of hope. I just returned from a promotional tour of the United Kingdom with my co-star from “Touched by Grace,” Amber House. I have been to the White House twice (and I didn’t have jump the fence either time), I have debated Ann Coulter on national TV, and I teach people all the time not to underestimate others just because of how they look. God didn’t put me in the world to increase suffering. He put me here to increase acceptance. My life is worth living.”

So in addition to being an amazing young man, who is Frank Stephens? He is a beacon of hope and a man set to change the world for those coming after him. Thank you Mr. Stephens for what you are doing for my son and so many others.

Looking back on 2 years with Down Syndrome

I cannot believe he is 2.  I mean it, somebody pinch me.  Have we only been on this path for 2 years now? Looking back so much has happened.  It seems like longer, yet at times so short of a time I have spent loving this little guy and so much has happened in the last 2 years.  How about a quick recap?

BIRTH

December 2016 we had an amazing homebirth with our 6th child, Cedar.  At birth my husband and I noticed some unique characteristics we had not seen in our other 5 children.  My world felt like it was caving in on me.  Our pediatrician saw us when Cedar was 2 days old and she confirmed that it did appear he had Down Syndrome.  When Cedar was 3 days old he was admitted to the NICU for elevated bilirubin levels, he was jaundiced as has happened with several of our other children.

You can read about that wild experience here.

While we were in the NICU God used a beautiful young lady who was doing rounds with the physicians to stop and share the poem “Welcome to Holland” with me.  That was gamechanger.  I clung to that poem after she read it to me, the tears streaming, but it gave me hope.

We then went home after our short NICU stay and tried to start our new normal, we also got our genetic testing confirmed, Cedar had standard Trisomy 21.

2 WEEKS OLD

When Cedar was 2 weeks old I sat down at my computer to write out a post for my then homesteading blog and this is what came out…

What does it feel like to find out your baby has Down Syndrome?

That post is also how we shared the news with almost everyone with the exception of immediate family.  That was my moment of acceptance.  I also realized I had so much more to say if I was going to help change the way Down Syndrome was viewed and help make it so that no other mama felt as alone and uninformed as I did when Cedar was born.  I also realized that my homesteading blog was not going to be the place to do that as the audience was all wrong.  I began the thought process for creating a whole new blog and what I wanted that to look like, I prayed a lot too.

That poem kept coming back the forefront of my mind though.  I wanted everyone to read “Welcome to Holland” 

I thought on how I might create a piece of jewelry that would somehow tie into the poem and that I could give away to new  moms on this path and the creative process began.  I realized though that in order to share this poem, I would need the author’s permission.  Unfortunately, Ms. Emily Perl Kingsley who is well into her 70’s at this time is not on any social media which made it nearly impossible to locate her.  This is where God comes in, I had hit so many walls trying to find her when out of no where, my daughter did some digging online and found an obscure bit of info that led us to her.  I actually reached out to her via telephone and left her a message figuring I would never hear from her, she emailed less than 24 hours later and gave me permission to use her poem.

2 months old

I was able to create a piece of jewelry that could be given to new moms and I was able to use Emily’s poem.  I provided these to my local NICU’s as well as our local early intervention programs, I had no idea how to reach further than that.

3 months old

We launched this blog.  The desire I had in launching this blog was that other moms who began that dreaded Google search hoping for information would find positive elements and breadcrumbs of hope.  I wanted to share Cedar to help people see that this life was not what I feared it was going to be.  But, I didn’t want to just have a site and blog with my son, no, that was too narrow of a view into Down Syndrome.  I began reaching out and asking others who were ahead of me on the path to share their stories.  As I published these stories on the blog I was healing as well.  Reading that my emotions, in the beginning, were so similar to so many other moms made me feel somehow less alone.

The most beautiful thing to me about the blog was the sheer number of messages I was getting in my email as well as on social media.  Other new moms were finding the blog and reading information, then telling me that it was a help to them.

5 months old

The idea to create a children’s book came to mind.

As I was starting to look for books for Cedar I found that there were very few that featured children with Down Syndrome.  Primarily I wanted real photographs as some of the depictions that were drawn were not favorable in my mind.  I reached out to a photographer friend and the process began when I invited 10 children to our farm when Cedar was just 5 months old and we did a photo shoot.  Though the book wouldn’t be released for another 9 months, the ball was rolling.

8 months

Our blog was ranked #1 in Down Syndrome sites by Feedspot

The traffic began rising which means more new moms were finding hope.

15 months

Our television debut to launch our children’s book on World Down Syndrome day 2018!

We did it, we launched a children’s book and it was well received, now there is at least one more book available to children with Down Syndrome that shows others just like them.

18 months

We officially launched an awareness jewelry line.  Remember that first piece that I mentioned, the Touring Holland one?  Well that one is still given away freely to new moms but we also launched a whole line of beautiful pieces meant to be proudly worn in order to spark conversation.

www.6arrowsdesigns.com

20 months

I was able to attend my first ever DSDN (Down Syndrome Diagnosis Network) Rockin’ Mom’s Retreat and lead a breakout session on blogging to spread awareness.  It was so neat to meet over 400 other moms in Phoenix, Arizona to connect in person and all because of an extra chromosome.  The highlight was when moms from across the nation helped assemble over 750 of our Touring Holland necklaces to provide as free welcome gifts to new moms contacting the DSDN over the next 12 months.

21 Months

I was privileged to join 4 other moms to create a whole new team at our local level and local Down Syndrome Association.  Our sole purpose is to welcome other new moms locally who have received a Down Syndrome diagnosis.

24 months

And that is what has happened in the last 2 years since I first learned Cedar had Down Syndrome.

Pauline’s Story- A 1 in 10 Chance of Down Syndrome

The initial early tests for trisomy disorders can cause alarm, and more often than not they cause a family to hold out on the hope that their child will not be the 1 in 10.  It can also be something that puts a stumbling block in the road of acceptance as a parent is not fully able to embrace the diagnosis when there is a chance that the baby will be born with the standard chromosomal makeup instead of a little something extra.  This is Pauline’s story, a beautiful little girl who had a 1 in 10 chance of Down Syndrome.

We were told our child had a 1 in 10 chance of having Down Syndrome due to physical markers like her nuchal fold. I was told this over the phone by my OB. Over the telephone made it feel a bit distant and not as personal. I also think that some of the messaging or caution is around the health of a baby with DS. The medical community is risk-averse and kids with DS can have complex health issues or not so many. The explanations for having a baby with DS seem very cautionary and can paint a very risky future. My husband and I both knew that with pregnancy–any pregnancy–complications can come up and once your babe is born, the future is still unknown. So it seems a bit harsh to be so cautious about having a baby with Down Syndrome. With all our medical advances, you would think this would be different. I think it’s fine to be realistic and provide a balanced view versus being overly cautious.

I was definitely sad about the type of future my child would encounter. Also, being a first-time Mum, I did not feel confident raising a child with a disability. I was afraid more for selfish reasons about how others would judge me, my child and my family. I had also envisioned a perfect future for my child. The diagnosis changed that and made the future seem more uncertain. It was mainly my own projection of what the future should be, so that it would be convenient and something I could predict and control.

I think most of my fears were around people we knew not being supportive and loving to our child. I’m by nature a very anxious person, so knowing that some babies with Down Syndrome may have complications made me super-paranoid. I also had anxiety from a previous miscarriage, so that baggage came with me, sadly!

We did not tell all our family about our child having Down Syndrome until they met her and then we explained it to them.

We had never really known anyone with Down Syndrome before our daughter was born, there was a girl at our parish, but we did not know the family personally. We were lucky to have watched “Imagine a world without Down Syndrome” back when I was 4 weeks pregnant. At the time, I had no idea our little one had Down Syndrome.

I worried about telling others because I was afraid of another miscarriage, mainly, and the possible health risks for a child with Down Syndrome, which could result in a miscarriage or a stillbirth. I also did not want to tell too many people about it and then have to explain it. We even waited to announce our pregnancy until our 4th or 5th month.

My biggest obstacle to accepting the diagnosis was that I thought maybe the 1% chance of the NIPT test being wrong was a possibility to hold out for. I did not accept the diagnosis. I loved our baby whichever way it turned out, though. For some reason, though, I felt maybe once she was born, against all odds, we would find out our little one would be a typical kid. It’s sad. I think I prayed that her Down Syndrome would be cured. I had a lack of understanding and just my own way of wishing and praying our future would be a different path. It’s strange how even our hearts can pray for the wrong thing and how I was so close-minded to this different path.

As far as health problems, our daughter needed CPAP for 12 hours and went immediately to the NICU. I had the flu, so I did not get to hold her until 16 hours after delivery. Once she stopped needing CPAP, she lost 10 ounces of weight and was not latching for breastfeeding. So we stayed until she reliably started bottle feeding. We did that so we could get our little one home sooner. We worked on breastfeeding again after she was gaining weight and becoming a champ at drinking from her bottle.

This was our second pregnancy as we lost our first at 7 weeks.  This time around we had complications. I had a flu while giving birth and then had too much amniotic fluid. Our daughter was a breach baby and she had a few heart decelerations in the womb. At 37 weeks, when I went in for a regular OB appointment, I was told I would have to deliver that day. I was hopeful they could manually move our babe from breach position, but they did not want to do it with the risk of the heart decelerations. So we waited for 20 hours for a OR to be open, since we were not an emergency case.  At 8pm the following night, she was delivered via C-section.

My husband Pete was more positive when I gave him the news. He was the one who said we get the opportunity to be parents and for him to be a father. It did not matter to him that our child had Down Syndrome.

After going through a miscarriage and then having another high-risk pregnancy, it felt like a lot. Some of it was a challenging time not knowing what to expect. It did bring us together more as a couple, since we had to lean on each other for support–more me relying on him. We try hard to navigate decisions for our daughter together, we share appointments and we try to both be engaged with therapists, doctors, and daycare staff. He has been 100% supportive and sometimes does more than me on a daily basis to take care of our little girl. It’s amazing to see his love for her.

I know this is weird, but I kept saying to myself, “Oh, you can barely tell that she has DS.” In my eyes, that’s what I thought. Some others at drop-in Mum groups noticed it, but not often. So I just left it at that and would not even mention that my daughter has Down Syndrome. Only at about 8 or 9 months did I start to say it more publicly to strangers that I’d meet. Ironically, this was the time that I felt that this was her normal. Having Down Syndrome was part of made her unique and I felt comfortable talking about it without feeling like others would judge her or me. I just wanted to be her advocate and, at the end of the day, for people to just see her for her, a little girl a with personality and individual traits, DS being just one of them.

Can you be honest about your initial feelings and share what they were, this could be a huge help to new mamas so they know that all of us share some thoughts and feelings when we grieve what we thought we were having.

I was mainly sorry for myself and not knowing what kind of a pregnancy I would be in for. It felt like the Down Syndrome diagnosis meant that something could go wrong that would cause a miscarriage, so that made me super worried and anxious. I did not know what to expect, from a health perspective, at all as to what our kiddo or we as parents would go through. I was definitely unsure about her future in the school system, since bullying and judgements are part of that environment. That part still puts me on edge.

What enabled you to move from learning the diagnosis to embracing it?

I think I always accepted my child and I was grateful for a mostly uncomplicated pregnancy and a healthy baby. The first time I got to see her and hold her was the best feeling in my entire life. She was perfect, Down Syndrome and all. That felt like heaven on earth for me.

I also had a strange dream the night after I met her for the first time, I dreamt about seeing myself in the mirror and as I looked at myself my features changed and l looked like I had Down Syndrome. I think that image is so vivid still. It for me still shows me what other people will see, but that means nothing. It’s just an appearance and not who a person is.

How did friends and family respond and was their response what you expected?

Some of the family was very supportive, some shocked and some did not have any reaction. It was all over the place when they first met our daughter.

I find the hardest part for me has been around hospitalization and doctors’ appointments and how sometimes the assumption from family is that my daughter is sick or sickly. For sure, sometimes we’ve been in hospital because our child was very sick. For the most part, though, the appointments are follow-ups to keep her on course. It’s been hard to deal with that perception. Family and friends are curious about her milestones. That is always a challenge to explain. I try to explain hypotonia or developmental delays to help them understand why she is not reaching some of the milestones like her peers yet and how she’ll have to work twice as hard.

How has your life changed?

For me, just becoming a parent is a huge change. I totally did not know what I signed up for–and oh yeah, I’m an only child. My parish priest always talks about the onlies, including himself, being very used to everything being about themselves, ha ha! That changed. Breastfeeding, pumping and the lack of sleep made the first 3 months feel like a tidal wave! It’s not different from the experience of any other new parent. For both me and my husband, this is our new normal. Our parish priest actually helped us understand this; our daughter is our “typical” kid cause she’s our first kiddo!

Angelique is a wife to her husband Peter, a mother to her daughter Pauline and baby Pat in heaven, and works full-time as a UX researcher. She lives in Toronto, Canada. She has always been inspired by her Catholic Christian faith and to walk with Christ on this journey called life.  You can follow along on Instagram @angelqube.