James in a Box

Anybody want a present?  :D

With love.

Happy Easter, Take 2

I think Easter was the best day ever for James.  We surprised him by sticking him in the car first thing in the morning to head to church which made him super happy.  Then he got to see three groups of his favorite people: our neighbors, my side of the family, and Mark's VA side of the family.  He was pretty excited about all the socializing.

We bought him a truck for his Easter basket since he can't have candy and we thought he would be pretty excited about it.  So far, not much excitement.  We were hoping to show him how to roll it while sitting up and maybe that would motivate him to want to sit but all he wants to do while sitting is kick or throw things.

Here are a few pictures, beginning with James' first Easter egg hunt.

Working on getting the egg into the basket.

He decided he didn't want to pick up any more eggs.

Snuggling with Daddy instead of hunting.

James and his buddy checking out their eggs.

With love.

Happy Easter!

He is risen, Alleluia!!!

James got a spiffy new outfit for Easter, complete with his first tie.  I thought he would hate the tie, he always tries to pull his bibs off and throw them away, but he loved playing with it.  Mark gave him a haircut last night so he looked extra handsome for Easter.

Happy Easter!!!!

This is the best we could do at 7AM.

With love.

Family Road Trip!

Hello all.  Sorry for the long silence.  Fair warning, posts will probably become less frequent now that there aren't as many medical updates.

The Pilegaard family went on our first family vacation!  Mark, James, and I got to spend a few days in Williamsburg, VA and had a great time despite the rainy weather.  It was great to have a spacious two bedroom condo with a full kitchen and dishwasher!  James really enjoyed the open space - he never stopped exploring and even became infatuated with the spring doorstops.  James did well in the second bedroom and we loved having a room to ourselves for the first time in a year and a half.

We were able to hit several historic places, definitely worth the venture into the rain.

Yorktown:

The river is behind us.

"Dad, that doesn't look so safe."

Jamestown:

It was raining pretty hard here, but we had to get a picture with the sign.

Colonial Williamsburg:

James tried to dive back into the stroller after our picture.

It worked.

And he was pretty excited about it.

We don't have a tub at our house so we took full advantage of the one we had on vacation.  James loved his baths:

We thought the bath love would transfer to the pool:

He enjoyed it until about a minute in when he decided to stick his head in the water.  I think he may be traumatized for life.

We got to have a nice dinner out and James and I had a "cardigan date."

"Hi."

I'll upload James playing with the doorstop soon!

With love.

James' First Sweater

Getting his first sweater may not seem like a big deal, but it sure is for James!  Until surgery to close the g-tube site James' drawer was filled with onesies, long sleeve shirts that button around the diaper, and overalls.  We had a few regular shirts for messy or casual times and to give us hope that one day James would wear "normal" clothing.  But, we had to be careful with our clothing selection so that James could not get his little hand around the tube and do damage or bump into something that might hurt the site.  And the clothes had to have buttons so that we could run the tubing between the buttons to provide accessibility and protection.  As James got too big for the onesies we had to search high and low for overalls that had snaps.  Luckily we found a few pairs, two jean and one tan corduroy for special occasions.

So, as the bandaging came off the site and the scab started to get less scabby I started thinking about the endless clothing possibilities in our future.  Not only will it be much easier to shop for James, but it will be much easier to dress him, too (all those buttons take forever)!  We took a little trip to Children's Place Outlet for their $2 winter clearance sale and got him his first sweater, a long sleeve rugby polo, and his first pair of jeans.  It was so exciting, he really looked like a little boy!

Below is what happens when I put James' cute sweater on and let Mark finish feeding him breakfast while I get ready for Mass.  Note the mohawk hasn't gone away that evening for Aunt Melanie's birthday celebration.  And that I do think my husband is funny.  :D

With love.

Denmark Proud to be Down Syndrome Free?!

I recently stumbled across this article by Elizabeth Lev.  I didn't know what the title, "Misdirected Wonder at the Miracle of Life: Rottenness Beyond Denmark", meant, but I remembered her from my semester abroad in Rome as our favorite guest lecturer.  I was surprised to find that it was an article on the calculated extermination of people with Downs Syndrome around the world.  Denmark, specifically, touts its record and claims that the year 2030 should bring the last birth of a Down Syndrome child in it's country.  WHAT?!  Why does no one seem to recognize the demonic attempt to eliminate people with an extra 21st gene?

I will let you read the article for yourself as Elizabeth Lev provides very good information of the subject, I will just give you our experience.

Prenatal testing has become accessible and affordable to pretty much everyone.  Prenatal testing does have a purpose in our society.  There are situations where prenatal testing is necessary to perform medical intervention before the birth of the child.  However, how often is this the case?  Ms. Lev points out that 92% of fetuses in the UK and US with a Down Syndrome diagnosis are aborted.  When I was pregnant with James several doctors tried to push invasive prenatal testing on us, telling us it would affect how we would proceed with the pregnancy.  These doctors were not necessarily telling us to have an abortion (one doctor did mention that "option") but they tried to convince us that it would change the way they handled the pregnancy.  For instance, if it turned out that James had some fatal genetic anomaly they "would not do a C-section" so as to prevent issues in future pregnancies.  WHAT?!  Would you like to stop a second and ask me what I want?  If my baby was going to die you better believe I would want them to cut me open so I could spend even five seconds with him.  And whatever happened to do everything you can for a person instead of resigning them to "fate"?

Why do people with an unborn child suspected of Down Syndrome decide to abort their babies?  When we had James we received a beautiful welcome packet from the Down Syndrome Society of Norther Virginia.  Among other things we received a book called "Gifts" about how children with Down Syndrome had a positive affect on lives.  I came away from that book more depressed than uplifted.  A majority of the stories began with the decision making process of aborting or continuing the pregnancy and ended with a short bit on how that child has made the parents and/or family happy.  Why did these parents consider abortion?  The big two seem to be inconvenience on the lives of parents and fear that the child will live a life of pain.

First, inconvenience.  Unfortunately, our culture is in "me" mode.  Parenting is a sacrifice and if couples aren't prepared to make the ultimate sacrifice for their children I hope they will think before they procreate.  If couples don't live a life of self-sacrificing love in their marriages then it is hard to believe that will pass on to their children.

Second, pain.  I will tell you it has been incredibly difficult to watch my son go through four surgeries, to see his pain and not be able to cure it.  Thanks be to God we are past that stage and our son is healthy.  Even in and through all this pain my son has shown the joy of life.  His smile alone brightens anyone's day.  We all have pain in our lives and how many of us would rather we never be born?  Pain happens, but love conquers pain.  I can't begin to tell you the amount of people that stop to marvel at my son.  I don't think any of them realize he has Down Syndrome.  They tell me they can't get over how happy he is and how he brightens their day.  I had a woman chase me down in the grocery store once because she has seen James before in that store and hoped to get another smile from him.  He had the entire hair salon cooing at him yesterday.  We, as a nation, as a world, are so lucky to have people to show us that life is a gift and that, through the pain, there is no doubt that life is worth living.

With love.

Support Brings Hope

It is so important for everyone to have a support system.  It is even more important for families of a child with special needs to have a support system.  Sure, we have our doctors and therapists, they certainly do help us.  But who is there after our appointments, when we walk through the doors of our homes to work through the daily difficulties and try to implement all the important developmental exercises the doctors and therapists have advocated?  Our only recourse is family and friends (well, and, of course, God, but I am focusing on the "earthly" support system).

If you know someone who has a child, brother or sister, grandchild, etc. with special needs, please reach out to them.  Just a simple, "how are you doing?" phone call or email makes such a big difference in the day.  I remember a couple friends who called me a few time in James' first few months.  They (sisters) both left (separate) messages saying that they wanted to check in to see how we were doing, let us know that they were praying for us, they would be happy to do anything we needed, and not to worry about calling back.  That type of completely self-giving charity meant so much to me.

It is amazing how much we can learn from children.  This little boy would do anything for his friend.  Check out the lengths he is going to help find a cure for his friend's liver disorder (p.s. the friend has a g-tube).

Boy Raises Money for Friend

With love.