Updated NDSAN website

Check out CJ's story on the NDSAN website.

Some people ask why do we need awareness?

Some people ask why do we need awareness?
- To be reminded how much your son is loved and that the impact is bigger than just the two of you.
- To see the light bulb get brighter and brighter!
- To smile as someone who "can't learn that stuff" leaves typical in the dust.
- To educate even just one is to impact the future.
- To watch motivation bring things to a whole new level.
- To observe "no point in even trying" hit it out of the park.
- To help one more person understand.
- To keep things in the present, looking towards the future.
- To know who is on the other end of the phone call. 
- To know high expectations are expected and reached.

We are all more alike than different.

Comparisons

CJ does not have all of the facial characteristics of Down syndrome, which leads to a two fold conversation.  For a good majority the idea that he has Ds doesn't come naturally and the awkward conversation centered around him not reaching milestones on time takes place. Once they realize he has Ds, the usual responses center on how he doesn't look like it, am I sure he does and/or he must not have it that much. 

I have the genetic test results. He in fact does have Down syndrome; and outside of mosaic Ds, there are not degrees like there is of the doness of your steak. He has his mother's lips and if you really want proof check out one of my favorite parts of him - his Palmer creases on his palms. They make for sweet hand prints. 

Running on CJ time usually does not lead for comparisons to fall CJ's direction, but everyone once in a while the comments of "you need to hurry up and grow as big as CJ" come along. Not bad for a middle of the standard growth chart kid ;).

...but what about CJ

It is no secret that I have a soft heart and have a hard time saying no when Iowa Kids Net calls...unless of course, they call at 3am, then I find it rather easy to say no and no.
I know I am not the only person who gets questioned concerning the impact foster care has on my "real" child.  First of all, glad you consider him "real" in this situation, now if we could just work on  the concept overall...

CJ is social...I know it takes a lot to figure that out, haha.  He loves watching kids play and being around people.  In the past two months I have watched him light up on two separate nights - both when a surplus of people were around due to foster care transitions.  I have watched him figure out how to climb over babies on the floor, and stop to pat the baby on the back.  I have marveled as he entertained those younger than him and rock the empty car seat back and forth.

He has taught someone half his age to crawl and been motivated to get moving by another toddler. 

Our lives would be very different without all of CJs siblings and I wouldn't have it any other way. 

Compare and contrast

As we sat waiting at one of our many appointments in Omaha today, I watch CJ play and interact with other children.  As they all played around each other, I noted how I could sit back and observe with no need to defend my child or explain his disability.  Though it may have had something to do with the specialized eye doctor's office we were sitting in, my hope and wish is that CJ continues to be just another kid for as long as possible. 
One of the children playing in the waiting area had many similar physical features as CJ including skin color and hair texture.  As this young man brought toys to CJ to play with, I inquired how old he was.  To my surprise he was a month younger than CJ...and walking...and talking a few words...and carrying toys...and climbing up and down a chair...  In some ways I felt heartbroken watching the boy's advance development displayed before me.  (Also, I do believe this boy may grow to be very, very tall!)
I know, I know, on CJ's time and in CJ's way...still hard though!

Amazing Friends

How cool is this?!  Sarah at http://sarahely8989.blogspot.com/ has the blog listed as one of the amazing friends she follows!!  I love following Sarah's sewing adventures.  Go check her out!

Who needs a clock?

Who needs a clock when you are running on CJ time?  From desating on command in the NICU to getting his first tooth a year to the day of coming home; Charles James Galvin, named after his great-grandfathers and affectionately known as CJ, rolls at his own pace. 

For Miranda Galvin in the summer of 2011, the idea of becoming a foster parent was placed on her heart, and about this same time her dream to adopt a newborn baby with Down syndrome also started.  As a special education teacher in Sioux City, Iowa, she was thinking more like when she was 35 or 40 and either was married or had decided to start a family without Prince Charming.  After completely foster care classes, and while waiting to get a call for her first kid, she signed up with the National Down syndrome Adoption Network.

 Fast forward to November of 2013; Galvin is busy planning a birthday party for one of the two siblings in her care.  Thing 1, as the birthday girl is affectionately known as, enjoys going with Galvin to GiGi’s Playhouse in Sioux City where Galvin is heavily involved in the educational tutoring, playgroups and Down syndrome Awareness Walk operations of the Playhouse. 

The morning after the cupcake birthday party, Galvin receives an email from Stephanie at NDsAN.  A baby boy had been born the day before, Thing 1’s birthday, and Stephanie is wondering if Galvin would like to be considered as a potential forever family for the little boy.  Not wanting to close the door on any opportunity in life, Galvin agrees but assumes a young, single gal from Iowa doesn’t have a chance.

Thirty-six hours later it is time to pick Thing 1 and her little brother up from daycare to take them to visit their mom for the weekend.  As Galvin arrives at daycare, she realizes she has a voice mail from Stephanie congratulating her as the new mom of the baby boy in Tampa, FL!  In the midst of a life changing weekend of preparations, Galvin heads to the Playhouse to work on a project day she is orchestrating to get the latest set of photos of smiling area children on the walls.  It is in the middle of just another morning at the Playhouse that Galvin shares she is officially a Playhouse mom.

Today, a morning at the Playhouse includes 14 month old CJ playing on the floor with his friends, while Galvin pauses to add another hat to her duties at GiGi’s, the one as mommy sitting on the couch catching up with her cherished friends, fellow moms.

A year in review...

As 2014 closes out, the traditional year in review begins to hit social media.  I don't have a cookie cutter year to look back on; 2014 was one that was life changing for me.  Yes, CJ was born in 2013, but much of that time was spent sitting in warm, sunny Florida.  :)

January
Finally had the chance to settle in and find a groove in our new normal.  Luckily for me, someone slept through the night starting the second night out of the noisy NICU.

February

March

April
Surgery - CJ has his PEG tube replaced with a GJ button.  This was one of two surgeries this year that led to an almost instant response from CJ.  He was a different kid after this.  Guess I would be too if they took a plastic disk out of my stomach...

May
GJ replaced...that didn't last long!

June
Game changing surgery number 2.  The entire package of this surgery showed me how much trust I have in CJ's medical team and how amazing, especially, his ENT is.

July 

August

September
Baptism and adoption finalization FINALLY!

October

November
Happy Birthday!  Time to dig into that cake!

December
Bedtime just got easier: No need for O2 at night and forget the need for the feeding tube too!

ZERSCHLING: Gigi's Playhouse is welcoming home for Down syndrome families

ZERSCHLING: Gigi's Playhouse is welcoming home for Down syndrome families

CJ’s Siouxperific Pal

I have been involved at GiGi’s Playhouse for several years now and have even co-chaired the walk before. However, this year when my friend, Miranda, adopted a son with Down syndrome the Playhouse took on a new perspective. I could not be more excited to be able to participate in this year’s walk as a member of team “Super CJ.”

           CJ could be described as “super” for a number of reasons. First, CJ is super tough. CJ at only 7 months old had undergone 3 successful surgeries and taken each   one in stride. He has a smile that lights up a room. One of my favorite things is being with him in public and watching people’s faces at they can’t help but smile because his super smile is contagious. CJ is also a super friend, he knows when you are talking to him and begs to be talked to more. CJ is super aware and loves listening to stories, he looks intently at the pictures and even helps you turn the pages. CJ is also super friendly, he loves being around people and getting to cuddle.

           I am excited for CJ to be able to grow up with GiGi’s Playhouse as a part of his life. He loves getting to meet and play with the other babies as well as being held by the older kids. His mom loves being able to connect with other moms and swap notes on different things at the playhouse. Few places connect people and build friendships the way that GiGi’s does, and even fewer places spread love the way that GiGi’s does. One of my jobs at the playhouse is at volunteer coordinator and I watch people fall in love with GiGi’s and the unique group that makes up our GiGi’s family all of the time.

        I encourage you to help support the playhouse and help spread love with us in October.

                                                                                 Thank you,

                                                                                 Hana Krommenhoek

Baptism September 21 2014 Charles James Galvin III

It's all in a name

Remember CJ's adoption story? http://mommieanda.blogspot.com/2014/01/god-found-me-you.html?m=1 

Well guess what?! 

Those Reece's Rainbow Angel Tree ornaments were of three beautiful children, including my Angel Tree Angel "Susan". I knew Susan had a forever family a few weeks ago and tonight her family was highlighted on the website's Facebook page as they reached another milestone in the process.  

As I looked through their blog I not only got to see updated pictures but God's crazy and well thought out plan added another chapter. Not only do we live only a few hours apart BUT GUESS WHAT THEY ARE NAMING HER!?!  Same spelling and everything!  Hope I get the chance to share the news with Thing 1. 

I had the wonderful chance to connect with her new mom via social media tonight. God is so amazing!

'Twas the night before the first day of school...

As I lay here the night before the first day of school, I realize it is not just any new school year. It's not just the seventh new school year of me teaching. It is the first night before school of me being a mom. Not only 100% mine, don't have to share, always forever mom; but mom of a kid with special needs. A teacher of kids who CJ could be just like in six years. A teacher whose partner teacher is welcoming eight Kindergarten students with nervous parents into the elementary school setting tomorrow. A mom who so very soon will be on the other side of the fence for first day of preschool, first day of Kindergarten and just first day of new caretakers of my child. 

I am beginning THIS school year not worrying about how many side hugs I give or how messy my handwriting is in the communication notebook. I am beginning this school year as a mom who just happens to also be a teacher.  

Snapshot of bedtime

And to think this is only the kitchen prep part!

Repeat twice a day, no matter how late you may be running in the morning ;). 

CJ time

Seven months ago I didn't know when CJ would be able to eat by mouth again. I was so frustrated about the lack of feeding therapy and help. I was worried I wasn't doing enough to help him learn how to eat. 

In typical CJ fashion he is loving getting the chance to eat and of course has an opinion on it :)!

Now my worries have shifted to gross motor but I know in CJ time those worries will be old news too. 

New mom

Dear new moms - 

I may not have much to add to your post-pregnancy body conversations or your discussions on breast feeding, but I wish you would open the stroller line and let me slide in.  I may not have gotten to experience the kicks in my belly but the waiting wasn't any easier. The path I took is not as traveled as yours but it lead to the same place of caring for a little human being. 

-not a tummy mommy but a mommy all the same 

God Moments

On a weekly basis I get the chance to pause and reflect on God moments from the week. This weekend God was on fire through CJ! 

He had surgery Friday morning. Dr. Sewell had planned on a 2.5 hour surgery. Once he had gone back Emily and I had brunch - salad and pizza at 10:45am. We hadn't been back in the waiting area for long and Dr. came walking towards us with a smile on his face. I was confused but didn't think it could be bad based on his facial expression. 

The over two hour surgery only took an hour. The most difficult part was getting the IV in. Possibility of going home sooner than thought too. After the Dr left a nurse came to give us a report that he was out of surgery...um yep the doc already told us. Guess we also missed the nurse originally while we were eating...

He did super in recovery and was ready to go to his room in PICU shortly after. By the time the afternoon was closing out everyone was impressed with how he was doing. 

I played the role of stubborn mom. I was determined that no preventable hiccups were going to delay us going home. 

Doc stopped by before 7:30 am Saturday. My stubbornness eliminated any reasons for not going home THAT MORNING!

God is good!

Gifts

As I was rocking little man, as thing 1 lovingly nicknamed him this weekend, long after he had fallen asleep tonight; my brain began to wonder and reflect.  Reflect on those who are not in my life by choice; either by mutual or one sides choice to walk away. 

Though I miss some of these individuals who crossed my mind tonight; it wasn't for myself that I was sadden by our lost disconnect. It was for them and their lack of opportunity to have someone as awesome as little man in their lives, even if just occasionally.

For them to not truly smile from ear to ear as a small child laughs and giggles. For them to not have the opportunity to share in the celebration of reaching a milestone once seemed to be so far away. You see I no longer find myself counting down days till the next turn of the calendar - except maybe to pay day for the sake of my bank account.

A major life responsibility has brought me peace and a feeling of contentment. Though life is still going by too fast and it seems like just yesterday, I can honestly say I'm doing a decent job of enjoying each day.

So before you push someone aside out of convience for yourself, consider what they can give to you. To receive a priceless gift. 

Happy Thoughts

As I was reading a blog about the power of positive affirmation today, I began to think about CJ's response to me telling his story and how I can portray his adoption story.  Often, when I begin to tell his story, CJ will display body language of being annoyed or upset - yes I know he is a baby...  Whether he is acting on the words, tone or focus of the situation, I can do my best to use the power of positive affirmation in connection to his story, ethnic background and hair.  Though there maybe limited dancing and yippee shouting... 

His Plan

I'm taking part in a 8 week class at church and today we reflected on the idea of God creating the Earth and then He just stepping back to let things run it's course. 

It dawned on me how much proof against that I have. And how much strength I have in response to people questioning my choices based on what a potential future husband might think. 

His plans are so beautiful and well orchestrated when you stop and think about all He has done in your life. I will admit I could have said no thanks but I'm so glad I didn't. His love for me shows in His thoughtful blueprint. 

A beautiful young mom makes the choices she did that leads to making the decision to put her unborn baby first.

For prenatal care to consist of one false negative, the perfect date for an appt. and the need for baby to be born right then and there. 

An email followed by a phone call built on the foundation that you atleast try opening the door. Worst outcome is it's locked. 

Lack of chance to need to make a decision. 

The heart of a young birthday girl to speak through. 

A maid of honor support system without the wedding. Along with the silent love a father has for his daughter. 

And you question what Prince Charming is going to think?  I'm pretty sure He has that covered too!