Dawn@cedarsstory.com, Author at Cedars Story

Who is Frank Stephens- A Man With Down Syndrome

January 15, 2019 by Dawn@cedarsstory.com Leave a Comment

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.

https://www.youtube.com/watch?v=yQJEoRhkapw

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…

Image courtesy Global Down Syndrome Association

“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.

Saving Your Marriage after a Down Syndrome Diagnosis- One Mom’s Fight

January 10, 2019 by Dawn@cedarsstory.com 7 Comments

Saving your marriage after a Down Syndrome Diagnosis

Many moms have shared their stories on this blog and each brings a slightly different perspective to the table. We all experience so many emotions at learning of a child we have had, or are expecting, being diagnosed with Down Syndrome. Some of us lean on our partners and our marriages become stronger, but some really struggle and they are not alone, it is just not something that is often talked about. This post was written by one brave mom who wants others to know that she has been there too. One mom who bravely fought to save her marriage but wishes to remain anonymous to keep her husband from ridicule, that is a strong woman. This is one mom’s fight, saving your marriage after a Down Syndrome Diagnosis.

There is a video floating out there on social media that brings me to tears every time I view it. It’s a group of moms with their children with Down syndrome signing carpool karaoke to the song, “A Thousand Years” by Christina Perri. I play the song for my daughter with Down syndrome before her naps. Some days, I cry while rocking her. The lyrics bring me back to a dark time in our life.

My daughter’s diagnosis was a shock to us. We found out on the day she was born. We had been through many heartbreaking miscarriages, and we had waited so long for this little one to arrive. Of course, I had concerns and emotions to process when the diagnosis was delivered, but I remember looking at her and thinking, “I don’t care. I love you and I will protect you for the rest of your life.” I also remember looking at my husband and watching him go into a state of shock. He appeared lifeless. He wouldn’t even look at her or me.

I remember holding her in my arms in the wheelchair as we moved to our room after delivery. We were in the elevator with another family that had just had a baby. The other mom smiled, her bundle of joy in her arms, and congratulated us. I looked up at my husband and he was not there. He was physically there, but he was not with us.

The lyrics take me back to that elevator ride every time.

The day we met,

Frozen I held my breath

Right from the start

I knew that I’d found a home for my heart

Beats fast

Colors and promises

How to be brave?

How can I love when I’m afraid to fall

But watching you stand alone?

All of my doubt suddenly goes away somehow

One step closer

I have died everyday waiting for you

Darling don’t be afraid I have loved you

For a thousand years

I’ll love you for a thousand more

I made a decision in that moment. This was our baby. This was the baby that made it after losing so many. I waited so long to have her and I would love her forever. I had to believe this was happening for a reason. I would learn everything about Down syndrome.

For the first year and a half of my daughter’s life, my husband disappeared. The man who replaced him self medicated with alcohol. He stayed out late and didn’t come home. I would nurse our newborn through the evening utterly alone. Even when I confronted him, he didn’t care. It was as if he didn’t care about anything at all.

His career involved travel and he made a conscious decision to stay away from our home as much as possible. I would try to talk to him. His response was always the same. He was joyless. The only thing that brought him happiness was his career.

This was not my husband. The man I married had doted on our first daughter. He never wanted to take a vacation without her. He did all the things that Dads do. He threw her in the air. He was her playmate. He did laundry, cleaned bottles, and told me that I looked beautiful when I didn’t. He reveled in being a Dad. He was a good man and husband. Depression had taken him from us.

I confided in very few people while this was going on. The people I did lean on didn’t know how to help me. They knew my husband had been a good man, but they worried. I worried. I would never leave him alone with the baby. He wouldn’t utter the words Down syndrome. I could go on and on about the pile of incidents that occurred that first year. He broke me. He broke our family. He even went so far as to tell me that he didn’t love our daughter, on my birthday no less. I was riddled with anxiety. I was terrified of something happening to me. Where would that leave our daughters? I asked his family for help. I asked his friends. No one could reach him.

I pushed for him to see a therapist. I pushed for medication. He insisted he was fine. I wanted him back and I had to believe he would return to us. I turned to my support groups. Had anyone dealt with this? If they had, they weren’t willing to admit it. No one could relate to what I was going through. People would simply say, “If my husband didn’t love our child, that would be the end of our marriage.” It’s so easy to sit behind your computer and make proclamations like that, but no one was standing in my shoes.

It all came to a head after another night of him not coming home. At the time, I didn’t even care if he was having an affair. I realize how crazy that sounds, but I had bigger priorities. I just needed resolution or closure. So, I kicked him out. He exploded and the rage came out. He beat me down with his words. He said awful things to me. He took everything he had been bottling up, and took it all out on me. It was all my fault. In the 15 years I had known my husband, he had never acted like this. I told him he was not allowed back in the house, until he started going to therapy.

Eventually, he did start going to therapy. He moved back in. He started medications. Some of those medications brought on fits of rage and anger. One night, after drinking, he proclaimed he wanted a divorce and that he wasn’t happy. He took it back the next day, but it was too late. He had done so much damage, and I didn’t know if I was capable of forgiving him. He was not participating in our family or being a parent. He knew nothing about this sweet baby that I had fallen in love with. He had not been on any appointments. He had not met any of her therapists. I was clinging to hope that he would come back to us, but truthfully I was hopeless. This constant state of uncertainty ate at me. I wanted to protect both my daughters, and I didn’t want them growing up in a volatile household. I left him, both girls in tow, and went to my parents’ house.

Eventually, he came to my parents, begging for forgiveness and asking me to please give him one more chance. I told him that he had been emotionally abusive. He had broken us, and I didn’t know if I could forgive all that he had done. I didn’t trust him. I agreed to couples counseling and I told him this was the last chance.

Why am I sharing our story? I know that there are other moms out there, going through this right now. I know you feel more alone than you ever have. You are not alone. Anybody who says their marriage didn’t struggle after a diagnosis is lying. I remember reading articles the day after her birth that said, couples that had a child with Down syndrome had a lower divorce rate than the general population. That made me feel like a failure. I don’t want anyone else to feel as isolated as I did. There is nothing wrong with you. This is life changing stuff.

I am happy to say that my husband has returned to us. It took work. We had to fall in love again. I had to learn to trust him. He had to prove himself to be a better man, husband, and father. It’s a work in progress. We started by carving out times for just us. Medications did not help him. Over time we realized that exercise was his weapon to fight depression. Truthfully, he needed to process it, in his own time. Little by little, I let him into the world of our daughter and her diagnosis. Our daughter is 2 now. He still doesn’t participate in her therapies, but our therapist told me that I need to let him get there on his own. He needs to look at her for who she is, not her diagnosis. He supports my advocacy work, and he listens and takes note of her progress.

He has love in his eyes when he sees her. The other day, my daughters and I ran into his arms, after he had been gone on a business trip. I had a realization in that moment. When we were struggling, he would come home from a trip, and suck all the joy out of the room. His mood and demeanor would bring us all down, but now we miss him. He walks through the door and we are happy for his presence.

At times, it feels like it took us a thousand years to get here. I cried more tears in that time than I have in my whole life, but we made it. I put one foot in front of the other and focused on being a mom to my daughters. They got me through that time.

Some people think I should have divorced my husband, but they have not been through or faced what we have. Depression can change a person. It can make them unrecognizable. A diagnosis can send someone into a state of grief and depression. So, when you are looking at those photos of happy dads accepting their child and loving on them, don’t let it suck the joy out of your world. Not everyone gets there right away, and that’s okay. I wrote this anonymously, because I did not want to expose my husband’s journey, because it isn’t my story to tell. My fellow Rockin’ mom bloggers agreed to share it. My hope is that it reaches someone who needs to read it.

Finding Shoes That Fit Over AFO Braces

December 31, 2018 by Dawn@cedarsstory.com 5 Comments

Finding Shoes That Fit Over AFO Braces

Once you have decided that orthotics will be a benefit to your child, (and if you are still in that phase be sure to check out this post here) you will likely encounter the next hurdle and that is shoes. Yes, my friend, shoes that will actually fit over the new custom braces can present a big challenge as your child will need a good pair of shoes while cruising around wearing the new stabilizing orthotics. So, never to let you down, here is a super helpful set of tips for finding shoes that fit over AFO braces.

Getting Used to Bracing

If you have just gotten your child’s braces you will likely enter a phase of slowly getting them used to wearing the braces. Our orthotist recommended a few hours a day and gradually building up until Cedar was wearing them most of his waking hours. I found that for us, this worked well and initially, while on carpet, we often did not use shoes while we were getting him used to the AFO braces.

Finding the right socks to do the job

For us, we had the best luck when we use very thin socks as opposed to some of the thicker infant and toddler socks on the market. Having the thin socks means that I don’t have to worry about yet more bulk when looking for those perfect fit shoes. These are perfect (not to mention there are a lot of them since our dryer likes to eat socks)

Time for shoes…

I normally prefer to shop online and I love velcro strap shoes (totally easy on a mama) but this was not a win for us while trying to find great shoes for the braces. Many times the velcro strap that goes across the foot will not close over the bracing making it a no win. Another tip to consider when looking for shoes that will fit over AFO bracing is checking to see if the sole of the shoe (on the inside) is removable as this can provide just that little bit of extra room needed for the braces to fit comfortably in the shoe. Oh, and don’t hesitate to size up or size wide when searching for the perfect fit.

So here it is folks… our picks:

Converse lace up shoes seem to fit great but keep in mind you will still see the braces and sometimes they can get pulled off easily (depends on how persistent your child is)

K Swiss Classic Pro Lace Up Shoe. These had a great fit but keep in mind you will have to lace em up.

Adidas Baby Baseline velcro shoe. This is the first Velcro shoe I have found that will actually fit across the braces and close properly.

Lastly, this shoe was not in the video as we found it later but we needed a good church shoe for dress up. This has been Cedar’s favorite and I find that you can almost not see the braces at all in these.

We have seen such improvements for Cedar in his ability to cruise, and stand for extended periods of time since we had him fitted for his custom orthotics from Surestep. Finally finding the right shoes to complete the process was huge for us.

If you are using orthotics, what shoes have worked for you?

NOTE: This is a sponsored post that contains affiliate links. These links do not cost you anything extra but do help with the maintenence of the site.

Looking back on 2 years with Down Syndrome

December 22, 2018 by Dawn@cedarsstory.com Leave a Comment

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.

7 Tips That Will Help You Tell Others about a Down Syndrome Diagnosis

December 7, 2018 by Dawn@cedarsstory.com 2 Comments

Whether you find out during a blood test, an ultrasound, or at birth, a Down Syndrome diagnosis likely will… or has rocked your world. To say it is shocking, scary, numbing and lonely are all understatements compared to the hurricane of emotions that you may be feeling. To top it all off, there is the need to share the news that your baby has a diagnosis of Down Syndrome, yet the intense desire not to. Here are a few things that helped me, and will likely help you also when you need to share the news about your new babe or babe-to-be.