DSAM: Jennifer's Story

Jennifer and Liam

It is day 16 of Down Syndrome Awareness Month and I am so pleased to be able to share Jennifer's story with you. Every parent has their own unique experience and I wanted the opportunity to share a variety of perspectives here in hopes of shedding some light on what it is like to be a parent of a child with Down Syndrome.

My name is Jennifer, and at age 28 I found out I was expecting.  I was so thrilled and excited and scared. My entire pregnancy was not easy from the very start, I was constantly sick pretty much the entire time.  To make things even more difficult I found out I had gestational diabetes.  At my 33 week ultrasound the doctor told me that Liam's humorous and femur measurements were short, which is know as a soft marker. Before this ultrasound all my ultrasounds came up "normal". The doctor proceeded to tell me that I had a 1 in 150 chance that my baby would be born with Down syndrome. For a very long time I hated my doctor for telling me this. With this information hanging over my head I was a mess, I cried, I was angry, I couldn't understand how this could possibly happen to me. At 37 weeks I went into labor and three days later I gave birth to a healthy beautiful baby boy. Liam weighed in at 7 Lbs and measured 19 inches. He was absolutely precious. The second I saw him though I knew, I knew he had Down syndrome. I could see it, but no one else could or they decided not to see it. Through genetic testing we confirmed that Liam did have Down syndrome. The next few months were dark for me. I mourned the life I wanted for my child. I cried. I just couldn't understand. 

As a new mom, already not knowing what I was doing, add low muscle tone into the picture.... it's a game changer. Two days after we were released from the hospital we were re-admitted. I had no idea that Liam wasn't latching on, he lost 11% of his body weight was extremely dehydrated and extremely jaundiced. I felt terrible! How could I not know that he wasn't nursing, how could I think his constant crying was normal? I thank god every day that something worse didn't happen due to my inexperience. Low muscle tone, tongue tied and nipple shields were my new reality. I worked closely with a lactation consultant for a full three months to get Liam to nurse successfully.  We worked tirelessly together to figure out this dance called nursing, I pumped and bottle fed meantime. Our hard work paid off, literally at the three month mark he just got it. It was such a big moment, I was so happy I didn't give up or give in. Everyone around me was telling me to just give him formula. 21 months later and we are still nursing strong. Like our nursing adventure, every milestone has been just like that. We work and work and work to get Liam to achieve his next milestone, and then one day he just does it.  Liam is amazing and silly and smart, it just takes him a little longer to do things.  It's truly amazing watching his determination and motivation to achieve what he wants.

  Every single day I celebrate the little things, all the things that parents of a "typical" child would over look.  I have forever been changed in such an amazing way.  Now I look to the future with optimism and hope, and I know that it's just an extra chromosome ... It doesn't define what a wonderful little human he is.

Thank you Jennifer for sharing your story!! 

Liam is AMAZING!

Abort What You Think You Know

I read an on-line article today about a woman in the UK who chose to abort her son because she was told he had Down Syndrome and a host of other health problems. I would never judge anyone for terminating a pregnancy as I am Pro-Choice but I had immediate feelings of sorrow for her. I feel sorry for what she is missing and what she really has lost. She should have aborted her pre-conceived notions about Down Syndrome and what the "professionals" (who likely have no children with Down Syndrome or first hand knowledge) told her and her husband. I applaud her courage to share her story and images with the insensitive masses and open up to ridicule. I wonder what her reasoning was to come forward now during Down Syndrome awareness month and have to question the plug for the agency that helped her. The Antenatal Results and Choices (ARC) who she will be soon running a marathon for.

Based on her carefully crafted language she and her husband seem like a loving pair who have done their best to rationalize their decision of terminating Oscar's (yes they named him) life before they had a chance to meet him. They claimed his heart condition boasted a 1% survival rate. Maybe this is what pushed her to the decision of termination in conjunction with her fear of having a "poorly child with Down Syndrome"? or it was their feat of judgement of him? or their lack of knowledge? I wouldn't want to speculate. She claims to have received support for her decision as opposed to being met with opposition in general. This was also a really sad part of her story and a reflection of how our society as a whole views Down Syndrome. She implies that people understand why she would terminate a baby with Down Syndrome and it is more accepted than aborting a "perfect" or "typical" baby.

My son isn't typical but he is perfect.

This being Down Syndrome awareness month I feel it is an excellent time to start a dialogue about professionals and how they deliver diagnosis and information to emotional, vulnerable, terrified parents and how this information and its delivery impact their decision's and lives.

In her article she notes that approximately 3 abortions a day in the UK take place because of a Down Syndrome diagnosis. I would love to know how many are based on FEAR of the unknown due to the inaccurate information provided by their health care professionals, who after all are just people too.

We blindly put our faith in these people as once we enter a health care facility it is as if we loose all common sense and revert to placing blind faith into the hands of our intelligent, over achieving peers who achieved a higher education than us and dedicated their lives to their profession for whatever reason. 

In the US physicians and physicians assistants take the traditional Hippocratic Oath, with one major cornerstone being "First do no harm". Is failing to provide accurate and/or current information to parents harmful? I will say YES! With 1 in 691 births in the USA one would assume that more attention would be paid by health care professionals to update their information on this not-so-rare chromosomal issue.

I can speak from experience the devastation that a poorly and thoughtlessly delivered diagnosis does to a mother. My son Blake was born with Down Syndrome in 2011 and we has no prior knowledge or even risk. Our ultrasound, like my daughters was clean with no physical "markers" for Down Syndrome, I was under the age of 35 and declined genetic testing and deemed it unnecessary as I would have had Blake no matter what testing revealed.  When he was born he came in a dramatic fashion and spent 6 days in the special care nursery with issues unrelated to Down Syndrome. The Doctor's suspected he had  Down Syndrome because of the shape of his eyes. This was the only physical characteristic seen at birth, no simian crease, no low set ears, neck issues, heart issues, etc.

They took his blood and told us we have to wait about two weeks. They (Doctors/Nurses) also gave us some cliche, bullshit, information about people with Down Syndrome. Reciting stereotypes and things you hear from random people. No congratulations or the excitement that I received when my daughter was born. Just solemn faces and lots of "doom and gloom". I was given generic resources to call but never anything REAL about people with Down Syndrome. A lot of "we don't know" and "Everyone is different" and all the things that could happen that would be considered negative, wrong or a struggle for us. I received NONE of "People with Down Syndrome live productive lives" "People with Down Syndrome are living into their 60's and beyond" "People with Down Syndrome have jobs, relationships, go to college and have happy lives".  You can imagine a hormonal, post-partum mothers terror as I am reaching to the only trusted people that are there, the ones who are supposed to be all powerful and knowledgeable, the Doctors and medical staff! When Blake's doctor did give me his final diagnosis I had brought Blake into the office at two weeks of age for his circumcision. When I politely asked the Doctor, "So... Did Blake's test come back"? His reply "Oh, you didn't get my voicemail?" I was in shock and said "Obviously not or I wouldn't be asking" and he replied" Oh yeah he has it" and promptly got up from his chair to go check the other room for foreskin removal prep. The doctor left me hysterically bawling my eyes out in my husbands arms.

Oh yeah he has it? Seriously? A diagnosis left on a voice mail? A diagnosis so thoughtlessly given to me with no compassion or care. He had very little answers for me and in a follow up frantic phone call I had more information than he did about Down Syndrome and the different types from a simple Google search.

I always wondered who the person was who received the news of Blake's extra chromosome on their voice mail. They probably felt sorry for whomever was supposed to receive it as I'm sure that message was not much better than the one we had live.

Image by: Hayley Marie Photography

I wonder if this woman's decision would have changed if she would have had a chance to talk with me or another mother who is actually living with a son with Down Syndrome. Ultrasounds and Doctors can be wrong, remember mine that said Blake had ZERO markers and Down Syndrome was a non issue .... maybe the same was true about her child's "1% chance of survival"?

I also want to point out that Blake has been a treasure to his siblings, not something that takes time away from them. He can be the bratty little brother too like any other kid but by-and-large they all like playing together and including Blake. We have an age range in our house of 16,12,6,3 who all require attention from us. As parents you juggle and "make it work", having a child with Down Syndrome is not a detriment to your other children.

Blake is many things, a son, brother, nephew and grandson. He is now a student in an inclusive pre-school with peers and friends. He is an inspiration to me personally and impacts the lives of all of the people he comes in contact with. He is also a little stubborn contrarian who is self directed and knows what he wants. He is funny and loves to dance. He is a rough-and-tumble, sensory seeking boy. He is MY SON, perfectly imperfect.

I want to offer the mother a lifetime of compassionate condolence that she will need while forever missing the beautiful baby she didn't want to take the chance on. I'm sorry for her fear and her grief. I'm going to kiss my son now and celebrate that he is not a generic, 'typical' child. I will celebrate how exciting our lives are now as we just don't know what Blake will do or achieve next, just like our other kids. I will happily accept the extra work, sleepless nights, stress and worry that comes with the title of "Mother". I feel fortunate that life forced me into changing my perspective and gave me the opportunity to be a part of the Down Syndrome community.  She should have aborted the ideas and stereotypes she thought she knew, instead of Oscar.  Again, I respect a woman's right to choose, I just hope she had the accurate information when making her choice. If she truly did I think her decision may have been different.

My husband, Blake and I

I would love to be a resource for other mother's who are contemplating this decision and be available to share my experience. The Antenatal Results and Choices (ARC) organization's mission is "We believe that every parent should have access to non-directive information and support through antenatal testing and its consequences"
I would be open to providing the parents support so they gain access to ALL the information from a person directly dealing with someone who has Down Syndrome, not a chart, graph, or medical statistics and what "could" happen.  I would like toadd that there are MANY positive "consequences" to having a child with Down Syndrome. NO ONE KNOWS what a child will do or not do but the child. It is up to you to decide if you are willing to live with the "What if" based on tests ans stats alone or instead accept your child for all of his/her uniqueness and embrace your new reality.

I would be happy to consult with ANY mother at ANY time.

Image by: Tamara Wickstrom

World Down Syndrome Day 3/21

Out to dinner on Valentine's day!

Today is World Down Syndrome Day!  It is the 9th anniversary of this global celebration. The celebration centers around the Down Syndrome community, every ones unique abilities and our global connection as human beings. Today I celebrate the core foundational values that should bind us the world over; respect and equality for all people.

It is also my 400th blog post. I am so proud that this post can be dedicated to a community that I adore and that I was welcomed into with open arms on May 13, 2011 when my son Blake was born.

Thus far it has been an interesting journey, an extra chromosome means an extra full time advocacy job, extra love and and extra rewards beyond my wildest dreams.

Our Family Rocking Our Socks for WDSD & Blake! 

I have learned more about myself in the last 2.5 years than I feel like I have my whole life. For example, patients was a virtue that I truly had yet to acquire, then Blake came into my life. I am always rushing and watching time flying by but Blake's extra chromosome has forced me to slow down and take the time to experience and enjoy. As a mother to both my children and step-children I am essentially looking at the world through different eyes. I all ready feel like a better person for knowing Blake. I feel very honored to have been given the gift of also being his mom. I look forward to the rest of our journey together and the journey of educating the world about people with Down Syndrome.

The community deserves respect, equality and above all LOVE. Again, everyone deserves these basic human rights. We should all make it a daily practice to embrace and celebrate our differences really, regardless of our abilities. Let's spend our time today, and all days just enjoying each others strengths and unique characters. 

"A free soul is rare, but you know it when you see it- basically because you feel good, very good, when you are near one of them"- Charles Bukowski (author)

Soul Sunday: BRAVE

Blake and I

Down Syndrome Awareness Month is now over but being Canadian I'm taking the liberty of honoring their DS awareness week (Nov 1-7). Down Syndrome Awareness month/week is an important time for mothers, advocates and people living with Down Syndrome to have our voices and stories heard in hopes of educating the public. I was planning to write about my traumatic birth experience with my son Blake followed by the traumatic manner in which his diagnosis was given and talk about the triumph one can feel out of such perceived trauma or tragedy until the other day when I was face to face with a stranger.  

Blake enjoying the guitar - wearing Fab Kids top/pants from London Calling Collection

I was doing my regular domestic diva duties and grocery shopping with both of my children in tow. I may or may not have been pacifying them with a chocolate chip cookie so graciously given to frantic mothers shopping by the local bakery department (they must be mothers too). I was casually glancing over at the produce when a stranger approached me and put a hand on each shoulder, staring intensely into my eyes saying “You are SO brave”. I paused in shock and gave my blanket polite response to any ‘compliment’ and was just able utter “Thank you”. Before I could ask her what she was referring to she locked eyes with my little boy sitting in the grocery cart so patiently waiting for another bite of his chocolate chip cookie, she loudly proclaimed again, “BRAVE” and abruptly walked away. Stunned, my mind flashed to several things before I could actually process what she was saying; “Brave? I thought, for what? buying the Albertson’s guacamole? For wearing a vintage 70’s poncho with Native Canadian Moccasins to the grocery store? for feeding my kids cookies before dinner? Then it hit me. She was telling me I was brave because I am caring for my son, who she must have identified had a disability or specifically Down Syndrome.

I spent the balance of my shopping excursion contemplating this stranger’s declaration of my “braveness”. At first I was irritated and it brought me back to the feelings of annoyance when Blake was first born and many people came to me with “I’m Sorry” statements instead of the natural reply to a new child’s birth, Congratulations! I was irritated at her ignorance for not knowing how amazing my son is despite his perceived disability. But after a long internal dialogue and reflection in the isles of this grocery store, I realized she was right. I am brave. I am a mother. I have carried and nurtured cells to human life, I have given birth twice, I have spent countless sleepless nights tending to my children, I face societies ignorance every day when I step outside my door as people stare and whisper about my son. I struggle with the unknown future each day for both of my children. I stand back while other children the same age out play, out climb, out talk and out run my son. I wipe asses, noses, sticky hands and bloody knees. I bake, craft, clean, launder, entertain, cook, guide, advise. Oh, and in my spare time I am also a wife, business owner and my own person with needs/desires/passions. I AM brave. I am so thankful in hindsight for this woman who had the guts to face me and project my truth back to me.

I AM BRAVE.

I am brave because I focus my efforts on my son’s abilities not his disabilities. My son is smart, loving, strong and spirited. He understands what you say to him (receptive language skills on par with his age of 2.5) he just can’t respond verbally ... yet. I hear no “mamma” or “I love you” verbalized but it is okay, I can feel it. He signs for “more”, loves to dance, says and waves bye-bye, gives the best hugs, loves books, music and is willing to try anything with no fear. Blake and I entertain professional women all week long together, occupational and speech therapists.I work tirelessly to help my son achieve all the physical and verbal skills that come naturally to most, but for him take’s more work and effort. For example, Blake is naturally attracted to toys that require jumping but as of today he does not have that skill. In the face of challenges like these my attitude is “oh, well, maybe tomorrow”. Maybe tomorrow he will say mom? or mamma? We just keep working, moving forward, and being brave. This is not to say that everything in my chromosomal plus world is fabulous and positive. Blake also throw tantrums, spits, head bangs, defies me, pulls his sisters hair and is constantly destroying or undoing everything in his path. Sounds like a typical 2.5yr old? I don't know but it is typical for Blake.

The Motherload: My Step & Bio kids - Blake, Danica, Kaleigh & Dylan

You have to be BRAVE to be a mother of a child with Down Syndrome and you also have to be just as BRAVE to be a mother to ANY child. Every mother reading this is brave as we all face our own unique issues with our kids of all ages. I am a mother of two fabulous children and a step mother to two others, each with their own unique talents and challenges. This is what I want to world to know about Down Syndrome; these individuals are more like your children then they are different. I still face the same struggles and challenges as you do as a mother, just mine last a little longer or take more effort to accomplish or overcome but believe me we WILL accomplish them.Together. Bravely. 

Blake & His Sister Kaleigh

Great Expectations: Down Syndrome Edition

Blake with his sister Kaleigh

The times in my life I have had the greatest expectations for a person, and event or anticipated an outcome of a situation I have found myself the most disappointed. I have done it over and over again too, somehow expecting a different result. Wait, that's the definition of insanity, isn't it? The most 'insane' concept to me is expectations but I continue to get sucked into this vortex.

Life is a journey of work. Work from home, workout, go to work, work on your craft, work on yourself. Removing expectations from people is something about myself I am currently working on. It is a tough one as you have to retrain yourself in a sense. My son Blake has Down Syndrome (In case you missed the other dozens of posts about it). His presence in my life has been a crash course on a daily basis about removing expectations and replacing it with acceptance.

Let's think specifically about the expectations we have projected onto our children. We expect them to be the top of their class, their first words to come early, to be the smartest, fastest, happiest children. We can't help but compare them to others. Don't bother lying to yourself we ALL do and have done it. I am presented weekly with charts, statistics and developmental averages for which Blake is to be measured against. How can I not have expectations?  It seems only natural right? YES, if I want to be let down and set myself up for disappointment. I work on releasing my expectations of him so I can let him go at his own pace and do what he wants, when he wants from a developmental perspective. This notion of 'letting go' and letting him be who he is on his own schedule has been a tough one for me. 

Some of us judge our parenting skills on the development of skills in our children and how fast they reach these milestones which is the ultimate fallacy. Early intervention and extra practice will enhance a skill but honestly each individual child, when THEY are ready will complete a task, master a skill or say a new word. I used to judge myself  because my children's progress seemed to be the only measure of all the hard work, time, effort and care I poured into them each and every day. I don't do this anymore. Instead I honestly ask myself if I gave my best at the end of each day and move on.

How does my tale apply to every one's life? You don't have to have a child with Down Syndrome or any children for this to resonate in your life. Removing your expectations from others will help you minimize stress, allow you to be in the moment and actually ENJOY the event or time you are spending with someone. In my case, I enjoy my son's milestone(s) and his progress, no matter what the pace. I cannot project my schedule of how I want or wish things to be, but remove these expectations and learn to accept the way things are. The ultimate parental freedom.

Blake's extra chromosome has forced me to slow down my life and look at the world with new eyes. The only great expectations I have are on myself, to enjoy each and every moment.

Blake's Story: DOWN but not OUT

In honor of National Down Syndrome Awareness Month I teamed up with my friend and loving mother of 3 Tori Spelling and contributed my story to the Raise section of her eMAG EdiTORIal yesterday.

Read My Story: DOWN but not OUT HERE


Blake 2 days old - Special Care

This was my reality in the first week of Blake's life. He fought to be here and it was his courage that inspired mine.

As I look back on the last 5 months of Blakes growth I am forced to think of my own. Never has my character been so tested, my constitution so tried or my values and belief system so rocked. What I have realized is that our energy, collectively is best spent celebrating our differences and not judging them. We are ALL guilty of it (Myself included). What a boring, generic world we would live in if we were all the "same" or "similar". Where applicable apply the label of LOVE only.

The comments I have received from my family, friends and most of all virtual strangers in the last 24 hours have been overwhelming to say the least. I cried a lot yesterday while reading the public comments as I realized how many amazing, genuine, good hearted people in there are in this world, more than enough to drown out the negative, ignorant ones.

I look forward to what the future will hold with Blake and the rest of my family. A future that is unknown for all of us. We will enjoy our moments together confident in the fact that the world may knock us DOWN but they will never take us OUT! This is just the first you are hearing from me but I fully intend on becoming a LOUD voice of advocacy and information as I strive to give children with DS a voice. Sharing facts, and feelings in an intelligent and empowering way! I am PROUD of my son's extra chromosome ... Turns out thankfully MORE is MORE xo


"Every human being is intended to have a character of his own; to be what no others are, and to do what no other can do." - William Henry Channing


For more information about Down Syndrome visit the NDSS website.

Want to read more personal stories from the DS community? Many mothers reached out to me yesterday and shared their virtual spaces of LOVE!

Kellie: Enjoying the Small Things
Christine: Brody's Buddy Ride
Amy: GiGi's Playhouse
Kayla: Loving Austin
C. Smith: Results Not Typical
Amy: Mayson
R-WORD: Pledge to choose your words wisely and kindly!

Julie: Nina's Story