I am amazed by the human spirit. I am amazed by you. Each and every one of you, whether you are at your best or you are at your worst. I had an epiphany a little over a week ago on Saturday morning. It was a rare, slow start, sleep in till 7:30 instead of 5:30 morning and I was downstairs getting the littlest Laverty’s some breakfast. I was thinking way back to my early 20’s when I had recently graduated from college and felt such a huge disconnect between who individual people are in reality and the facades that are put on throughout the day. Nothing seemed to make sense. Why do we dress up for work? How does a teacher put on her teacher voice and act a certain way and then come home and act another? How do I drape myself in a persona and make it work for me when all I want is to be “real”. It was a big turning point for me deciding between, as I have written on the “About” page of this very blog, “getting messed up in the muck of this world, or …moving to Vermont.” Ha ha oh oh oh the irony!!! Can’t even stand it 🙂
Anyway what I couldn’t articulate then, I have been given a language for now through my catholic faith, and that is; we are imperfect people. We are lovely and self giving, and jealous and self righteous. Doesn’t matter if we are 2, 22, or 92. We are all and part at any given moment, in any given situation, around any given person. That is our lot in this world.
We are not perfect.
There is a peace that comes with knowing every single one of us has limitations, that we grow, we learn, we are humbled, we persevere, but never do we reach perfection.
I find comfort and space for love in that fact we are all in that same boat.
When I was 13 weeks pregnant with my 6th son I went in for a routine ultrasound, my husband had to work and wasn’t able to go with me, so I went alone. Immediately after the ultrasound I met with a high risk OBGYN because of some concerning markers they found. This Dr. told me that the baby I had just been watching squirming around on my ultrasound minutes before, had fluid on his neck and that it was was likely due to a chromosomal disorder. What I heard was blah blah blah blah, trisomy this, trisomy that, blah blah blah, bad, bad, bad.
Honestly I can’t remember all that she told me, but I know it didn’t sound at all good. She offered me a very new at the time blood test to determine what may be going on with my baby. I was shocked and sad when it dawned on me that the urgency she was showing about me having the test done had more to do with having time to abort than anything else. I felt horrified honestly, that it was an option, that my baby one instant was valued and the next wasn’t. I asked about waiting to check possibly at my 19 week ultrasound and she told me that one of the possibilities was that my baby could be dead by then. The medical student in the room with us offered me tissues, but I did not cry. I remember clutching the cross necklace I wore to the appointment and holding onto my faith like the center of a spinning wheel. I left without agreeing to any testing.
When I went back for my 19 week ultrasound the fluid in my 6th sons neck had resolved but they saw 3 markers for Down syndrome giving us a 1 in 3 chance that our baby had it. The new non invasive blood test the earlier OBGYN told me about, was again offered, this time, I agreed to it. Although there was no question this baby was loved and wanted no matter what, I also saw merit in preparing myself for something I was very unfamiliar with. When I got the call a week later from my midwife she told me the news that my son did in fact have Down syndrome and offered her condolences.
As if someone had died.
We are imperfect people. Medical professionals, neighbors, friends who don’t know what to say… Me too, I know I say the wrong thing often just in an effort to say SOMETHING…
We are not God. We are not each other. All we have is grace that we can extend to others and humility to nurture in ourselves.
I love my 3 1/2 year old son with Down syndrome. I absolutely do not feel burdened by him. I feel like when I was being told his life was not worth living, it was a lie. A well meaning lie, but a lie none the less.
Looking back at my early experience with a pregnancy with a child with Down syndrome, I do wish the health professionals I met had a more balanced understanding of Down syndrome, beyond a list of cant’s and won’ts, and will most likely be’s.
I recognize these people are human and burdened with their own limited experiences. I want to do what I can to show them and other very human professionals like them the gift of my child with Down syndrome, the child that God wove into my womb and knew with precision all of his inward parts. And I want to help that new mom pregnant with or having just given birth to her beautiful child that has Down syndrome to know it too.
When Gus was just a month or two old I found a brand new Facebook Group for moms of kids born in the same year as Gus that have Down syndrome. For nearly four years we have gathered together almost 150 of us in our Facebook Group to share insights and joy, successes and strategies, through sickness and health and sadly even tragedy. We post pictures of our babies, ask questions, and support each other across the country and even on the other side of the world. The women in this group made me feel from the start like I was not alone and like Down syndrome was just another side of normal, which I believe it is.
Well some of these amazing women saw the need of families with a new Down syndrome diagnosis as well as education for medical professionals and they decided to be the change and started the Down Syndrome Diagnosis Network or DSDN for short. After the success of our Facebook Group they have added about 2000 women to their own birth year Facebook groups so they be supported like we have been. Some other things DSDN does are:
Ensure physicians are educated about how to deliver a diagnosis
Support network of families through: Welcome Gifts, Memorials, Care Gift Cards, Scholarships
Reach hundreds of new families joining the Ds community each year
It is an awesome awesome organization. I would love to help them grow.
It is hard to carve out painting time within my mothering schedule, but I offered up some late nights this month to paint this Mary and Baby Jesus Peg Doll in honor of the coming Christmas season.
I would love to give it away to one of you!
I also designed a note card featuring the image of the Mary and Baby Jesus Peg Doll Saint I painted (thank you Louisa Larson for the photography) using verse 13 from Psalm 139 “For You formed my inward parts; You wove me in my mother’s womb.”.
It is a pdf printable that will be emailed to you after purchase. 50% of your $5 purchase goes directly to DSDN and helping them help folks just like me 4 years ago.
They would be great as a Christmas Card, but also a Christening Invitation, Birth Announcement, or Congratulations on the Birth of your Baby Card. The printable is an 8.5 x 11 with 2 approx. 4″x5″ cards on it. You can buy this paper and these envelopes on Amazon to go with it and you are all set. The best thing is with the file you can print as many as you want, whenever you want.
PLUS you will be entered to win the actual Mary and Baby Jesus Peg Doll Saint I painted. It is a 3 inch wood peg doll painted with acrylics with a non toxic finish. The drawing will be held December 8th, 2016 on the Feast of the Immaculate Conception (one day before my 45th birthday).
Here is the link if you would like to purchase the note card pdf: Mary and Baby Jesus Peg Doll Saint Note Card .
Thank you in advance. Even if you do not actually print the printables and just want an opportunity to win the peg doll, DSDN and I thank you for your contribution.
And lastly here is a little photo shoot of my sixth son Gus with the Mary and Baby Jesus Peg Doll. He was such a good sport for me, crazy mom with camera… I am forever grateful for this boy God wove so perfectly in my womb!
Love from Vermont,
*You do not have to purchase anything to enter the drawing for the Mary and Baby Jesus Peg Doll Saint (though it certainly would be appreciated). To enter just send an email with Subject: “Mary and Baby Jesus Peg Doll Entry” to: [makingitinvt]@[gmail.com]
**remember to remove [brackets] before sending.