Afraid of Down Syndrome

January 3, 2021 by Dawn@cedarsstory.com 4 Comments

I am the mother of a child that most people fear. Yes, you read that right. Children like my beautiful little boy terrify most women. Let me clarify for you what I mean. To look at this precious face you could never be afraid of him, he is joy, love, hope and so much more. But the world says otherwise and statistics continually demonstrate that women are afraid of down syndrome.

That is why in the United States 67% of prenatal diagnoses of Down Syndrome end in pregnancy termination. Wait, before you shake your head and leave because you know where this is going I want to tell you that I don’t blame those women who made that choice. Here is why…

Fear is a powerful motivator. Fear will cause us to make snap decisions, fear will cause our heart to pound, tears to fall, fists to ball up and bring about an impending sense of suffocating dread. Fear will also cause a well meaning, loving woman to make a mistake because she is afraid. That same woman who will likely later see that those with Down Syndrome aren’t as scary as she feared. She will likely regret what fear led her to do.

No, I don’t blame the woman who, out of fear chose to be a part of that 67%. I blame fear. Fear is not something that is given by God, though our children are. Fear is a tool that is used to tell women that they can’t. Fear is a tool that is used to tell women that they won’t be able to be happy any longer, they will have a dismal future, they will be sentenced to the doom of caring for a child with special needs for a lifetime. This is what fear has told women.

Doctors believe this fear too. At least the doctors who have no reference point in the real world for Down Syndrome. Doctors who tell women that their children can’t, their children won’t, and that it is likely their child will not survive anyway.

How One Couple Became Stronger After a Down Syndrome Diagnosis

April 23, 2020 by Dawn@cedarsstory.com 2 Comments

This post has been simmering in my mind for months now, I wanted to share that what can wreck a person, or at least feel like it is, can actually strengthen a relationship into something so solid the ties seemingly cannot be broken.

When we received Cedar’s diagnosis I had been married to my best friend for 18 years, that is a long time, friends. We have been through the births of 5 other children and the miscarriages of 4 that we never got to meet. We have been through career changes, financial ups and downs and so much more walking this path of life together. Marriage is not easy, in fact, there were times that we both wondered in the beginning if we were going to make it.

When Cedar was born I wondered for a time if this was going to break us, if this was the thing that would drive a wedge between us and cause marital stressors that would be hard to get past. You see, I wanted another baby but my husband would have been happy to move out of the baby bearing years. We ended up expecting baby #6, something that was a bit of a surprise to both of us. I had a bit of guilt at first when we received Cedar’s diagnosis, guilt that my husband would be angry with me, that it would be his resentment that I had wanted another child and our child now had a disability. I was worried that deep down my husband and I would not be the same again.

Here is where God, prayer, and a good relationship base helped us become stronger. My husband was my rock in the beginning, he was the one who took the news and just was kind of okay with it. He was the one telling me, it’s going to be fine, he will be great and it is all going to be okay. This was the man that I was afraid was going to be upset…he wasn’t.

There was a lot to take in when we first received Cedar’s diagnosis though, a lot of the medical world that we had to navigate together and we did it by checking in with one and other daily, and praying for one and other as well as praying together as a couple.

In the first weeks we gave each other space, but not too much. We cuddled our new little one and talked about him to one and other. We would ask each other what each other’s concerns and fears were and try out best to comfort one and other. We checked in with one and other by saying things like, “How are you doing with all this today?” Some days were harder than others, sometimes we gave each other a break and when one of us was in need of a break from the emotional aspects of it all, we provided that to who needed it. In a marriage you kind of know what your partner does for healthy stress relief and we offered that to one and other, my husband gave me time to process but also gave me time to do what helped me relieve stress and I provided the same avenue for him.

We also gave each other grace. When one of us was maybe a bit more snippy with the other than usual, we gave each other a break instead of fighting fire with fire. What I learned through the whole process is that there are things that come into your marriage that can actually strenghten you, when you fear that they won’t.

Here are some tips I would offer any other couple on this road…

Don’t push each other away…talk

When you become parents, it is stressful. When you become parents of a special needs child, it is even more so but don’t push one and other away, find time to talk about your fears and use each other’s strengths to help both of you. Set aside a time when you can talk to one and other daily, be it over a cup of coffee in the morning or just before bed at night. If you are the one who wants to talk and your partner doesn’t, this is where prayer is invaluable. Pray for your partner, pray for them to talk to you and to recieve comfort.

Pray Together

We are a Christian couple and I do not know how people make it in their marriage if they don’t have God, I know we never would have. If you set aside time daily to pray for one and other it is never a bad idea, it is even better when you can pray together.

Make Time for Your Relationship

In the midst of all the processing, medical screenings and physical therapy, continue to make time for dates. If you do something as simple as a fine cheese and cracker tasting on your back patio while the baby sleeps, it still counts. If you have the ability to enjoy dinner out on the town weekly, all the better, but whatever you do, date your spouse.

Seek Help When You Need It

When the emotions become too big, the weight of it all too much, sometimes we reach out to others. Maybe it is your best friend, maybe your pastor or a parent, but reach out when you are struggling and let your spouse know that you are reaching out.

Decide It Is Worth It

Any married couple will tell you that there are times when a marriage is not 50/50, in fact, often it’s 100/100 or 25/75, the bottom line is one of you needs to be strong for the other and then sometimes the roles change. Marriage is hard work, but it is worth it. Your child deserves parents who are able to work through the emotions and forge ahead so be sure that you make the decision because it is worth it.

Special Needs Parents; I felt sorry for them before my son was born

September 24, 2019 by Dawn@cedarsstory.com 6 Comments

Before My Son Was Born, I Felt Sorry for Special Needs Parents

I used to be that mom. The mom who pitied those special needs parents.

I would be in the grocery store and I would see the child with special needs yelling out or rocking themselves, I would smile politely and then turn away feeling bad for that mom.

I would be at a restaurant and see parents wheeling their disabled or special needs child to the table and think, I am so lucky to have “normal” children.

I felt sorry for the moms who had a child with special needs.

Yes, I admit it, I pitied them.

[Read more…]

Cedar Saturday

August 24, 2019 by Dawn@cedarsstory.com Leave a Comment

When I looked back over our last few Cedar Saturday posts I realized that it has been almost 6 months since I have done one of these, how in the world does time fly by that fast???

I’ll tell you how, 6 children, homeschooling, a husband who just finished up his bachelor’s degree and life, surgery for both Cedar (ear tubes) and his brother (tonsillectomy) it happens. Summer has flown by and a Cedar Saturday is well overdue.

Rather than cover the last week (since it has been 6 months of weeks) I will just share what has been going on with Cedar and then try my best to start these Saturday posts up again.

Cedar has continued to progress in physical therapy and with the patience and love of his therapists he finally began using his gait trainer (walker) more and more. Here is a good example of how he was doing…

But then…I was off teaching a class for the day to social workers (all about Down Syndrome) and dad happened to be the one that took Cedar to therapy. Do you know what he caught on video? Here are the links to see on Facebook:

and on Instagram

It was a moment that brought this mama to tears. He is still only taking a 4-6 step transition and prefers his bum scoot but it is progress and we are so excited about it!

Cedar also underwent ear tube surgery and did great. I asked for lots of prayer because no mama wants to have their child have to be sedated but Cedar did fine. Here he is just moments before being taken to the operating room and since the surgery he has shown improvement in his language development, we believe he is able to hear better without the additional fluid that his ears were holding before the tubes.

moments before ear tube surgery

We also had another litter of Golden Retriever puppies. It is interesting as we first bred our beloved family pet because she had the best temperament ever and was so patient with Cedar (she is the same age and her birthday is within 1 week of his) Just look at how tolerant she is of him (and incidentally she is his best friend).

Is there anything cuter than a puppy?

Because of this temperment, we have had 2 of our online friends who have children with Down Syndrome come from PA and TX respectively to get puppies from our mama dog. What started as a fun litter of puppies has turned into a desire to have the ability to have another litter or two and share these awesome furry friends with the world.

We spent a week at our county fair where Cedar’s older siblings won awards for their livestock, showmanship, and knowledge of animal husbandry. We even had a few friends come to visit, including our friend Dash who came all the way from Texas with his family to visit and take home a sweet furry friend.

We also swam, camped, and phew…summer is almost over. With that I will wrap up the latest edition of Cedar Saturday and we will play catchup again next week. xoxo

Cedar & Familly

How I Respond When Someone Uses the Word Retarded

June 7, 2019 by Dawn@cedarsstory.com Leave a Comment

How I respond when someone uses the word retarded

It is an outdated term, one that over the years has come to have a very negative connotation for behavior or appearance. It is a word often thrown around without a thought as to what it actually means to those with a disability. We hear it daily as it is a word that has become engrained into our vernacular as much as so many others do. So, how do I respond when someone uses the word retarded?

I admit I myself had used the term, before becoming a special needs parent, and it was without name calling or malice, but instead referencing how a situation or person was behaving. It was ignorance, like so many things before I learned better.

I fully regret my flippant use of the term now and realize that I may have easily hurt someone’s feelings without ever meaning to. How do you respond when someone refers to your child as “retarded”? If you have experienced this there is no doubt a plethora of reactions you have had, whether shown or not. But wait, as hard as it is not to respond out of a place of hurt, this can be a teaching moment if you will allow it.

Related post: When a Stranger recognized my son’s Down Syndrome

There is no secret that we continue to battle outdated stereotypes when it comes to our loved ones with Down Syndrome. The world is still VERY ignorant about what our loved ones can be capable of. They are often put into a box that says “they can’t” or “they won’t” I’m guessing that’s because years ago, when the first recommendation of doctors and professionals was to institutionalize those born with Down Syndrome shortly after birth, they really didn’t reach their full potential. Who could when institutionalized and not provided with a loving, stimulating, enriching environment?

In battling those stereotypes we will often come across very well meaning people who say things that make you want to face palm (or choke them) but we won’t condone the latter here. Just recently I was chatting with a gentleman who was a bit older than me (so that makes him as old as Moses himself, right?) But seriously, his outdated stereotypes came from a place of growing up not ever seeing integration or what capabilities those with DS possess. In our conversation he said “Those little retarded ones (like Cedar) are just so cute and sweet.” I am not going to lie, it stung like a hot poker. He went on to say “retarded kids are always so loving.”

Okay, stop for a moment and breathe (I had to). I know this man meant no ill intent. I know his heart was not malicious. I know he thought he was actually giving a compliment. That is where I had to refocus my mind to before I responded to him. This was one of those moments, like many I will have in the future, where I will make a choice. A choice to remove the hurt from my response, and respond in love and with the mind of an advocate.

So, how do you respond to stupid, outdated, and often hurtful comments. With kindness, compassion and the love I want shown to my son. (and lots of deep breaths)

The response was something like this…”The term ‘retarded’ is one I don’t like to use because it focuses on so many negative things. My son is already showing us that though he may be slower to do things, he is smart and capable.” I went on to educate a bit on why there used to be such low expectations for those with Down Syndrome but that we are changing all of that with early intervention and raising the bar as far as our expectations. I usually finish with something like, for all children, when you expect little, you get little, when you expect great things, you see great results.

I firmly believe that.

I am not naïve, I know that my Cedar will have areas that he will always be delayed in but if I don’t have big expectations for him, he has nothing to try to live up to. It is kind of like if I expect my typical children to do well in school, they do and they try even when it is hard, but if I have no expectations for them, or I accept D’s and F’s when I know they are capable of more, that is what I will get. This is my observation as the mom of 6 children, you often get what you expect. I expect great things and I expect that together, Cedar and I, and the rest of our T21 tribe will effect a change in the way people see what the word “retarded” actually means.