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.

Belated St. Valentine's Day

I meant to post this awhile ago, but it got away from me.  James got lots of love for Valentines' Day, which also happened to be the day he came home from surgery.  We gave him two Disney movies (I don't think we will do big Valentine's Day presents any other year, but when your kid is coming home from surgery #4 you get him a big present) and he got lots of fun cards and presents from family.  It was fun for him to come home from the hospital to the waiting Valentine's presents and cards.

And, by the way, February 14th is congenital heart disease awareness day.  We celebrated by staying in the heart ward at Children's with a healthy heart.  Yay!  :D

James rolled all over the place staring at his card from Nona and Grandpa Pilegaard:

James had fun with his balloon from Great Grandmom and Great Granddad Naughton:

With love.

Life is Always Beautiful

This story is beautiful.  The dedication of parenting, the amazing impact that any child can have on a family.  And the beautiful understanding that every life is valuable, everyone deserves love.  Children with special needs are a gift, we should flock to their unconditional love, we should aid parents devotedly caring for their children.  I hope that, as our family continues to grow, as James continues to improve, our hearts can be open to helping those living with the medical struggles we experienced.

I know that, before my experience with James, I was scared to lend a helping hand when it came to anyone with needs that I didn't understand.  I wanted to love them, I just didn't know how.  I wanted to help parents or siblings but I thought my help would be inadequate.  It turns out there is no secret to helping and loving different people in different ways.  Love is the same.  Help is the same.  Everyone needs help.  And everyone needs to learn how to offer and accept help.  It is a hard task.  It can feel like an insult to pride in accepting that you can't handle everything on your own or, especially, when offering a helping hand in a situation entirely new to you, one in which you are uncomfortably unfamiliar.  These situations push us to grow, they push us to draw closer to the love of God that leads us to greater love of our neighbor.  I pray that God keeps my heart open  with compassion and love for these families and their children.

An awful loss, a beautiful life, a daunting task

With love.

Normal Parenting Problems

I cannot tell you how wonderful it is to have normal parenting "problems":

1. James now likes to move everywhere at all times.  That includes while I change his diaper.
2. James thinks his feet are very fun and breakfast time in his highchair is a great opportunity to look at the brilliance of his feet.
3. We need to baby-proof.  This kid is getting into everything.
4. I had to comfort a crying baby who had opened a kitchen cabinet and pulled a pan onto himself.
5. Our kid is getting so big he is going to need a new car seat (this is still going to be a challenge as we work toward sitting).
6. My child is LOUD, in a happy way (but it doesn't work out so well at church).
7. I have to constantly do laundry to get James' meals off his clothing.

I thank God that he has given us the grace to learn what is important in life.  The graces we have received over the last two years are what have lead us here.  I tend to take things seriously, want to have complete control, and then get stressed and frustrated when things don't go my way.  And I know I will always struggle with this, but, for now I am seeing the fruits of our trials.  I can only giggle when James sits in his highchair, kicking his feet wildly and staring at them in amazement.  He still eats 200+ calories in under twenty minutes even with the foot distraction.  I think that is cause for gleeful laughter.  :D

So excited to eat!

All done!

Getting into the kitchen cabinets.

With love.