Why I Love My Son's 3 21s

James turned two last week and I am in a nostalgic mood.  We are finally starting to feel distant from the emotional struggles and exhaustion of the past few years which is refreshing, but we appreciate these years for the growth, faith, and love that we received and were able to give.  A friend recently had her twenty week sonogram and the doctors told her that they suspected Downs.  It was odd being on the "observing" side of the situation, but I was so glad that we could be there for her and her husband because it is a confusing feeling to hear that your son may have an extra 21st chromosome.

I remember well how confusing it is.  We couldn't figure out how to pray.  We wanted our baby just the way he was, the baby that we loved, the baby God had blessed us with, but should we pray away the struggles that come with the possibility of an extra 21st chromosome?  Every parent wants what is best for their child and it is hard to believe that mental delays and physical struggles (sometimes involving surgery) are what is best for him.

I have only just realized the best way to pray in these situations.  The only way to make heads or tails of wanting what is best while still accepting God's will is to ask for what is "good" for the child.

"Good" is so different from most parents' wishes: health, happiness, an easy life.  The sentiments are natural but not necessarily the most important.  Health and happiness will come and go (who hasn't had a rough relationship, a bully at school, terrible strep, or an ER trip with some crazy story?) and life needs character-forming struggles.   The best life is a good life.  "Good" goes deeper, it hits the core of who we are as people, how we see the world and interact with it.  "Good" is how we approach each conversation and action.  "Good" is how we love.

James certainly has a "good" life.  He radiates goodness and love to everyone he meets.   His interactions with others are the deepest level of goodness.  People I have never met like me because of my beautiful, friendly, happy James, my son that challenges me to be a better person, to give pure love.

Most people equate quality of life with health, success, happiness, and friends.  Because of this many "poo-poo" the quality of life of people with an extra 21st chromosome.  Oftentimes people with Downs do have medical struggles.  Because of mental delays people think kids with Downs won't succeed in education and other endeavors.  And with mental delays how will they be happy and develop friendships?  These people are severely mis-informed and, I believe, scared of people with Downs and have never met and interacted with a person with an extra 21st chromosome.  The health aspect can be difficult, but I can't tell you what a bright light James was through his hospital stays.  He flirted with every nurse and won everyone's hearts even in the midst of his struggles.  Mental and physical delays are not the cross everyone believes especially with the magnificent (and sometimes free) programs for development.  And it is incredible to see the happiness radiate from these kids and adults, the friends they develop and have for life.  It is just beautiful.  Who can say these kids will have a terrible quality of life?  They may have to work a little harder, but they certainly have a "good" life!

Back to the title of this post: "Why I Love My Son's 3 21s".  It is simple.  They make him who he is; the always happy, dancing, music-loving, waving, giggling, affectionate, stubborn, strong, social-butterfly that he is.  I wouldn't want to get rid of my son's third 21st chromosome because then he wouldn't be James.  We love him exactly the way he is and isn't that one of the best things to have in life?

James' third 21st chromosome means he will have to work harder than most kids, it will teach him determination, discipline, and perseverance.  It means he has a heart so open to others that he radiates love.  It means he will be a witness to the "goodness" of life no matter what the circumstance.  Can you imagine having that kind of joy in life?  I am sure that extra chromosome means so many things we have yet to discover and I can't wait to find out what this next year and the rest of his life brings.  There have been many difficult times, stressful situations and struggles, but, although he has been the one in pain, James has brought us through them with love.

I am grateful to James for the gifts he has given me just by being who he is.

Happy son on his second birthday!

With love.

Happy Birthday, James!

With love.

A Room of His Own

I hope to have some pictures of James' new therapy room up later this week, but here is a sneak preview:

James' therapist brought him a chair that we can strap him into so he can sit better.  Mark made a little table to go with it so James can do some good hand play and get his feet out of sight.  We are still trying to convince James that it is fun to use his hands.

With love.

Indulging in Italian Heritage

James had his first spaghetti!  We've held out before on the chance that he has a tomato allergy, but he did well with the new food.  He didn't have actual spaghetti noodles but spaghetti squash which cuts down on the worry that it will disagree with his little stomach (he's had squash before and it is a whole, unprocessed food unlike spaghetti).  As you can see in the video James got a blend of our dinner which consisted of spaghetti squash and Mark's famous spaghetti meat sauce.  He liked it until he decided he was done (possible sensory overload from the new tastes) and decided to spit it out at which point we had to stop the video and discipline him.  Kids with Downs are very smart and know when they are doing something they shouldn't and James definitely knows that spitting is not the way to tell us that he is done eating.  We had to give him a little slack because the sensory experience may just have been too much for him.  We'll have to try again when make spaghetti this week.

This new food was extremely exciting to us as parents as we are taking small steps closer to normal eating.  James has been working on chewing small, soft vegetable chunks and now is expanding his oral sensory experience with new foods.  This is a big deal for him as he doesn't deal well with oral change, not uncommon for kids that have oral delays.

Here is a video of James' first spaghetti.  I apologize for the boring parental conversation, it is a pretty standard James-related conversation as we work together to help James develop his skills.

With love.

In Philadelphia!

Pictures first today.

St. Rita's Shrine, Philadelphia 

Liberty Hall, Philadelphia - Both the Declaration of Independence
and the Constitution were signed right behind us.

Liberty Hall and the Founder of the Navy

Enjoying the day.

Not sure why he is getting his picture taken with a big broken bell.

Haha, just kidding.

Philly cheese stake!

James was happier with his own meal.

On Monday we went on a mini-pilgrimage to Philadelphia to the shrine of St. Rita, the wonderful saint that helped up through James' pregnancy, surgeries, feeding issues, etc.  We didn't know it existed until our friends gave us a perpetual membership to the St. Rita Society as a Christmas present.  We made it in time for Mass and were able to explore the basement of the shrine that contains two relics of St. Rita.  As we attempted to get upstairs to the main church a woman flagged us down and said she wanted to say "hi."  She had seen us in Mass (who hadn't, our kid is loud, but everyone loved having him) and told us that she grew up with friends and relatives with Downs and loved "God's little angels."  She was so kind and took us over to the rectory to help us get the key for the upper church where the parish secretary was so friendly to us as well, telling us about her son with special needs.  Needless to say we felt welcomed.  The upper church was absolutely gorgeous, but we couldn't stay long because we had a hungry baby (and a hungry husband).  

We got Philly cheese stake #1 at Pat's King of Stakes, the original cheese stake place in Philly before heading to Liberty Hall for a tour of the historic buildings.  James was really good during the tours, although loud.  We think he liked being around lots of people.  

We drove around, found the St. Cardinal John Henry Newman shrine and found Philly cheese stake #2 at a little shack that is rated in the top 10.  We took a nice long walk along the Delaware River after dinner which James loved before hopping back in the car and heading home.

James absolutely loves car trips.  And music.  

With love.

Things That Go With Summer

Reconnecting with old friends:

James reconnected with his panda buddy that kept him company in the hospital, they are having a great summer.  :D  He's also had a couple other fun people come to stay and play.

Postcards:

James got a postcard from Great-Grandmom and Great-Grandad and he loved it.

Grilling:

Daddy got a grill and the boys are excited.  :D

Singing and playing sports:

James loves balls!  We have enjoyed playing soccer and catch.  He made up a song about how much he loves his ball (see above).

Summer pjs:

James got his first set of big-boy pjs and he looks summer handsome and comfy for the hot summer nights.

With love.

In Honor of the 4th

James' first hotdog!

Our speech therapist told us to let James try lots of different textures tastes.  She suggested pretzel sticks and the like so when we had hotdogs I jumped on the chance to give him a good food that he can hold and wouldn't choke him.  We aren't sure whether he liked it or just liked holding it.

Happy Independence Day!!!

With love.