Last weekend, our family was interviewed by the President of Orange Socks, and we couldn’t be more grateful for the opportunity to share our story.
March 1, 2017, we went in for a routine ultrasound appointment, the 20 week anatomy scan.
After 45 minutes of checking measurements, the ultrasound technician said, “I need to call the other doctor because I can’t find the baby’s legs.”
“What do you mean?” We asked.
“Well, they’re short,” she replied.
“How short?” I asked. At this point, a mild panic set in. I know mistakes can happen and it’s so challenging to even find all of these measurements anyhow.
“By a few weeks,” she said.
Oh really? That doesn’t seem so bad. At least he has legs I thought!
We were recommended to drive into town to the main women’s hospital and have an ultrasound done by the head of the ultrasound department.
Sean, Truly and I drove down to the hospital and I was very nervous. We just went with it, but it was a very surreal, nervous experience.
The doctor said very little during the ultrasound, his voice and demeanor were gentle.
When we were finished, I sat up and he said, “The femurs are shortened and curved.” He showed us the ultrasound image of Niko’s femurs.
“I think it’s a form of Dwarfism.” He told us.
This was the gut dropping, body-numbing moment…. this was the moment that we can refer to as the moment…. where there is a before this moment… and an after this moment…. this is the moment that divides… that creates the before photos… where I look at myself and think, “Oh, that’s the woman who she was before everything changed….”
Everything went quiet in my mind, as our doctor trailed off about not thinking it was brittle bone, or something like that…. something about skeletal dysplasia….
Looking at the films, I didn’t really see what the big deal was with the bones… they were so little…. we are talking about millimeters here….
I slowly learned that there is an average measurement for the anatomy at 20 weeks. If anything is not matching up, then it’s a marker for an abnormality, a genetic condition, a problem.
Read our full pregnancy and diagnosis journey here.
One of the hardest things was coming to terms with having a baby that was considered different.
The shock of an abnormal ultrasound and being scooted off to a genetic counselor put things in a crazy place for us.
It took time to settle into the idea that this pregnancy was no longer considered normal and our lives were no longer what we thought they were.
It came as a great shock.
We just didn’t see it coming, as I’m sure many families can relate.
As the weeks went on and the follow up ultrasounds continued, we were faced with decisions and new realizations that not only was our baby different, but there was a possibility that he wouldn’t survive.
Although it was incredibly reassuring when his echo cardiogram came back normal, and all of his organs were normal, Osteogenesis Imperfecta, when diagnosed in-utero, is a very serious diagnosis.
We were coming to terms with the idea (and medical reality) that our son may not survive due to his severe bone deforming condition.
I often wondered if the doctors had it wrong.
I often wondered if this was all just a mis-understanding.
I would later learn to see that my inability to understand, was perfect…. and my understanding is not required to carry out my purpose here on earth…. my understanding is not required to follow the path of divine guidance… my understanding is not required to hear God’s voice and know that He is already there…. and everything is unfolding exactly as it needs to… in exact alignment with the greatest good and the blueprint of my higher self.
My understanding is not required to be a channel of this child’s soul and for his physical form to manifest into an earthside bundle of cells and stars and light and love….
“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully & wonderfully made. Wonderful are your works; my soul knows it very well.” ~ Psalm 139
For four months I took a journey of self-discovery, of faith, of deep- rooted trust…. of surrender and joy-seeking.
With great pain, comes great joy.
I learned that when we are given the opportunity to experience great change, unsteadiness and deep un-knowing….
…. not only do we rise, but we become the person we are meant to be.
…. we find courage.
We break the shackles of our human-ness and touch the tip of the brightest light that shines over all of creation.
We remember who we are and why we came here.
In the eye of the storm, we find peace and calm that cannot be manufactured….
…. it’s real and true.
Give a woman full access to her power, and she will show you strength, beauty and a greatness that comes from true authenticity and courage.
Remind a woman why she is here, and you will see a woman who knows fear and shows up anyways.
I can’t help but think of all the other women and families who share a similar story.
We are all connected and sharing our stories can help heal our own hearts and the hearts of others.
I also can’t help but think about the mom who shared online that she terminated her pregnancy after receiving a diagnosis of Osteogenesis Imperfecta… she had the same ultrasound results as we had….. shortened and curved femurs at 20 weeks.
My heart-ached for her loss, and it ached for her medical professionals who failed to offer her support and information. Perhaps it would have changed her outcome, perhaps not…. this is the un-knowing that may haunt her. Rather than dive into a future outcome that dwells in the realm of limitless possibilities…. her heart may have to sit with a possible worse outcome… one that never was, or never got to be.
Trust, faith and power are not afforded to us all, but they need to be. If we felt empowered to, would we?
If we felt empowered to live a life beyond our wildest dreams, would we?
This is a message that reveals itself through my prenatal diagnosis journey, and the birth and life of our son.
This message touches on a greater one that invokes the idea that if we felt our power, received through deep pain, deep joy and the opportunity to be transformed in a way we may not have initially thought….. what greatness could arise in our lives and in our families? What profound change could we make in our communities and in the lives of others?
And when I see a woman or a family who don’t remember their power…. I don’t think “they shouldn’t” or “they couldn’t”….. I think, If they felt empowered to, would they?
I see their greatness when they may not.
I see what they are capable of, even if they do not.
It’s time that we remember who we are so we can help others remember, too….
…. step into our power so we can support others on their journey, too.
There is a meme online that reads the following, author unknown:
A Special Needs Parent Fell in a Hole
Family member: What hole?
Boss: Oh that’s a shame. You can take the day off.
Doctor: I can prescribe you something so you feel more comfortable in the hole.
DBHDD: We will assess the size of the hole. However, it may take up to 18 months.
Local authority: Oh we meant to fix that hole, let’s see if we have a ladder around here…
Charity: Here’s a form. Fill it in to apply to get on the waiting list for a ladder.
Another special needs parent: I’m here! I’m coming down there with you. I’ve been here before. I know how to get out and I won’t let you do it alone.
May we find hope and peace on both ends of this hole.
Thank you to organizations like Orange Socks that inspires life despite diagnosis.
Visit Orange Socks for more information and look for our story to be shared this spring!