A mom and "wholistic" chiropractor's musings and roadmap with Down syndrome

Archive for October, 2019

Our diagnosis story

The “diagnosis story” is one I ask of all my patients….to see how it may have energetically and emotionally impacted the child, but mostly to hold space for mom and help validate her experience.

Oh the stories I have heard…….heartbreaking, infuriating…horrifying at how callous, uneducated, uniformed and just plain disrespectful. Mothers telling their doctors “under no circumstances will we abort” and are pressured EVERY.SINLGE.VISIT… “it’s not to late to change your mind…”

“your child will never walk or talk” “your child will be a burden on you and your family” “your child will never be able to do anything…”

Such lies.

And even if that WAS the truth- if a family decides to ‘take that on” then you RESPECT and SUPPORT their decision.

We did not have that experience…ours was a bit different.

The markers for Down syndrome on the one ultrasound I had were missed. To be honest, for that I am thankful.

The first person to suggest Connor had Down syndrome was our midwife, one who had not made it to his birth. It was about 11 days after his birth and we were there for a check on me and Connor. The whole appointment was very fishy- and my intuition was trying to tell me something was off. She took one look and said ” You are going to hate me forever, but I think he has Down syndrome”.

I said, “WHAT? Are you joking?”/

She said no, and you are going to hate me forever, but I think he does. You don’t need to test him, you can just take him home and love him”.

(Which would have been disastrous considering he had both a form of pre-leukemia as well as a major hear defect.)

We we not given a lost of things he would not be able to do, maybe it was implied, maybe that was my own stereotypes and prejudices….I would wrestle with those later…I was just in shock and thought the midwife was crazy.

What I WISH, looking back, was that this was not made about HER “you are going to HATE ME forever”….. there is no hate. That is ridiculous. But what would have been supportive is ” you have a beautiful child. Look how strong and healthy he is!! He is gorgeous! He is going to have an awesome life. I think he may have something extra…. he has some markers for Down syndrome. Let’s talk about getting him evaluated. He’ll be able to accomplish so much and have an amazing life, just like every other child…anything awful you have heard about having a child with Ds is bullshit…” SOMETHING along those lines. Maybe it would have softened the blow, maybe it wouldn’t- I had to go through my own process, face my own demons around that.

I can tell you, almost universally the biggest regret those of us with a child how has Down syndrome has, is that we grieved the diagnosis. So many of us thought it was the end of the world. A big part o that is what we have been exposed to culturally about Down syndrome. But when one’s own medical team is pressuring abortion…..how can you not grieve?

I wish i could go back and tell myself “don’t be sad- this is literally going to be one of the most amazing, transformative, expansive, heart opening things that may ever happen to you. You are going to experience love, acceptance understanding and joy like you haver have. You are going to become part of a community that will becomes so dear to your heart…you may not see it just now, but this will be THE BEST.”

That is why so many of share- to teach all of us, that these lives are precious, and NO ONE knows the future. 

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Whatever It Takes

I remember this moment-

We learned Connor had TMD- a type of pre-leukemia only found in Down syndrome.

I remember throwing up a lot that night.

In between trips to the toilet, I was on the computer.

The first thing I googled was “essential oils for Down syndrome”… Don’t ask me why- that is what I was led to type.

It led me to a blog of an Australian chiropractor who also had a child with Down syndrome. I felt a little less alone.

But it was his blog that led me to the now gone Einstein Syndrome blog, where there was the Top 10 things you need to know about Down syndrome.

I was not ready to deal with #1 on the list- that would come later though, and prove to be exactly right.

As I read the rest of the list, I realized, many of the things on the list we would have done anyway, regardless if our child had Down syndrome or not….no vaccines, real food etc.

Then other things on the list I was right on board with and had already been starting to study.

I remember thinking “I have been being prepared my entire life to have this child WITH Down syndrome! I’ve got this!”

From that blog I learned about TNI- Targeted Nutritional Intervention. It took me very short time to get up to speed on Down syndrome biochemistry. The premise of what I call “hacking gene over-expression” made intuitive sense immediately, I knew it coudl be done.

With time, using energetic testing, labs, energy healing, and functional medicine principles all helped to prove what my intuition told me so early on. And now working with hundreds of kids and adults, I know it is true and it changes lives.

But I will always remember that moment, when in the depth of my darkness and despair, that voice inside me said “whatever it takes”.

And I am so so grateful. For all of it. 

 

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The Down syndrome Mother

I feel this is a very nice and needed sentiment….
(the one down below….LOL- copied from another Ds mom!)

I do not feel the exhaustion- not from my experience as a mother to Connor- as a wholistic chiropractor who works mainly with people with Ds…well that is another story! 

I feel very blessed with how healthy Connor is. We have gone through many early challenges with him- TMD ( pre leukemia), open heart surgery, feeding issues, …I feel like there are things I am missing, lol….but we work hard on his health and it has paid off and I am so grateful, because I know many others who work just as hard and there are still challenges….I know because of the work I do with the Ds community…. working with hundreds and possibly thousands, I see and know firsthand it is not always easy.

For me, I try to no think too much about what may or may not be ahead- I try to stay present as much as I can, even during the tough times. I am not always successful by any means, and sometimes need some help re-centering.

This is such a fascinating journey….on the one hand, if you understand the biochemistry of Ds, you know the future is not so bright, in general, for those who are not actively working on supporting their biochemistry. So there is always this space of “Am I doing enough”. “Am I missing something?’.. Why is he /his labs/his body not responding the way I would like?” “What can I be doing better?” “Why am I not doing some of the things I know I need to do!”

It is easy to get trapped and stuck here- and that is a dangerous illusion.

And on the other hand, I balance this with …” whatever will be will be. We ARE doing a lot to support him! This is our journey, but this is also HIS journey. I trust in the love and the every present goodness of God and all creation, and I trust that everything works out for a higher transformation, even when I can’t see the big picture, or even with my experience tells me differently.”

It is an interesting tightrope of vigilance, action, intensity with faith, letting go, letting God….allowing yourself to grow and be changed by this life.

I love my Connor. And I love that he chose to be here, with Down syndrome…it is selfish on my part, 100%- but I feel very deep down, in my bones, in my soul, in my heart- that I could not, would not have been able to have my OWN transformation of the heart, without him. 

I so love my fellow Ds mommas! You have all made my life so much richer as we travel down this road together!

 Dr. Elizabeth

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“For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child.

The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child.

Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments, but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting life with Down syndrome can be hard. Very hard.

The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them.”
This Down Syndrome Awareness Month, take a moment to see the momma behind the child.

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Copied from another DS mom.