I used to think in my early twenties that I would either make a go of the world, let go of my black and white, get elbow deep into the muck of the world, or move to Vermont...
I used to think in my early twenties that I would either make a go of the world, let go of my black and white, good vs. bad thinking, get elbow deep into the muck of the world, or move to Vermont... read more here

Category Archives: Down syndrome

Some blog posts about what this extra chromosome does and doesn’t mean in our family…

A Prayer for My Son, A Prayer for Our World…

A Prayer for My Son, A Prayer for Our World…

We have this little box with a sliding lid that we keep prayers for dinner in.  I made it years ago when the older kids were younger and we were just starting a tradition of saying a blessing before dinner.  Some of the prayers the kids made up over the years and others I collected from books.  We have an old standby that we use at most meal times now, but years ago each child was given a night where it was their turn to choose and recite the blessing before dinner.  Lately we have mostly used the blessing box when we have visitors and want to give them the honor of choosing the blessing.

So it sits tucked away on the counter.  Two year old Paul has found it a few times lately.  He has set it on the table, slid back the top and proceeded to empty and spread out the 4″x4″ white card stock blessings.  He’s been pretty good with putting them back in, so I haven’t said too much.  Today he did it again and his brother Gus, who is almost 4 years old, got in on the action.  Eventually the cards fell to the floor in a messy pile.  I cleaned them up and put away all but one.  Gus had it and when I asked him to hand it to me he tightened his grip on it instead and shook his head no.  I tried sweet talking him a little, but he just did not want to give it up, so I let him wander around the house with the blessing while he made his own particular type of toddler mahem.  Later in the day, I found it laying on the table.  Curious I went to find out which blessing he had chosen…

It couldn’t have been more relevant.

Our world today is very nearly screaming to give voice to the voiceless.   For the tween/ teen trying to figure out how to fit into the world and feel safe using the thoroughly vulnerable space of a public bathroom, for women and the inherent inconvenience of fertile bodies that can derail plans and opportunities, or worse.  For the very littlest of us just beginning the journey of this world deep inside our mothers.  For the people who come to our country for opportunity, to escape poverty and war, who take risks we can hardly fathom for a chance at life and end up vulnerable without the rights the rest of us are born with.

For all the people our hearts bleed for, for the lives our eyes see, the people whose plights we relate to, for the circumstances that touch our families, the people that touch our hearts…

For my almost 4 year old son Gus, who has Down syndrome, a funny, sweet, great little problem solver, whose words, while they are surely making progress are far far behind most his age.

Reading that blessing he clutched in his hands all afternoon nearly took my breath away today…

“Dear Father, hear and bless

Thy beasts and singing birds,

And guard with tenderness

Small things that have no words.”

~Amen.

I read it and I prayed it.  And I know it is a prayer you pray in some way too…

With love from the silent mountains of Vermont,

~Lisa

You Wove Me In My Mother’s Womb

You Wove Me In My Mother’s Womb

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.

vr1a0970

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.

 

Peg Doll Saint Note Card Mary and Baby Jesus

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!

mj1

mj2

mj5

Love from Vermont,

~Lisa

 

———————————–

*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.

 

 

Obladi Olbada Mr. G Turns Three!

Obladi Olbada Mr. G Turns Three!

Tumbling around on the floor this morning enjoying life and one another, I’m like a mother lion with her cubs.  ~G and ~P jockey for space on my tummy for bounces and snuggles.  “Ob-la-di ob-la-da life goes on bra” sings out from my Pandora “Raffi” station and I can’t help but think: “It sure does…”Continue Reading

7 Quick Takes:  It’s Autumn in Vermont Edition

7 Quick Takes: It’s Autumn in Vermont Edition

Here’s my 7 Quick Takes on what’s been going on around here lately… 1 — Fall kind of slid right by no matter how hard I pulled at it’s coat tails begging it to stay!  I did manage to take a few photos before the splendor fades into the winter…     2 — ~PContinue Reading

Learning to Fly…

Learning to Fly…

One of my sons asked me a few years ago what would I choose (if I had the opportunity to be gifted with a super power) Flying or Invisibility?  Without thinking I immediately chose flying.  The son who asked me chose invisibility and went on to state his elaborate case for his choice.  But hisContinue Reading

7 Quick Takes ~ Chicks, Painting When Not Pregnant, Etc.

1.  My husband brought these home yesterday: We have 3 hens and one rooster and now apparently 5 baby chicks.  We had “talked” about possibly getting some chicks, but I didn’t really know it was imminent, till it was. 2.  The NEED (my prerequisite) for these new chicks to have a home other than ourContinue Reading

Motherhood Unexpected – a book review

So I am getting to know this lovely lady in my town.  I’ve known of her for about the last 3 years.  Her blog and memoir were suggested to me by a mutual friend who had read my blog post the day we found out the baby I was 21 weeks pregnant with (our very awesomeContinue Reading

Faith is Faith…

Today is ~G’s 2nd birthday.  (you can see him here when he was just 2 weeks old.) I followed him around all morning and afternoon with my camera.  After a while he was like “Mom, really, put that thing away!”  But I kept grabbing the camera sporadically through the day, trying to capture his mischievousContinue Reading

Bosom Buddies…

  There is no mistaking that ~O and ~G love each other. One of ~O’s favorite things is getting into the crib with his younger brother.  Here’s a photo of them from this morning: We took a walk a little later and for what ever reason ~O did not want to get out of theContinue Reading

Well Loved…

Today is World Down Syndrome Day.  This post is for my 13 month old son Gus who was born with an extra copy of his 21st chromosome and has Down syndrome. Gus you are so loved by your brothers, your Dad, and me.   You have special moments with each one of us, like when yourContinue Reading

Related Posts Plugin for WordPress, Blogger...