6 months...Times Square...Obladi oblada...Step UP

One half year.  6 months.  I can not believe that it has gone so quickly, and yes I know I did state this same sentence in my 5 month update.  I seriously am in awe of God's goodness in what we have learned in these quick six months.  First off, the love and support we have received through encouraging words, cards, meals, gifts, and interest in how our family is doing...has meant the world to us!  Speaking of how we are doing...I have a lot to fill you in on so be alerted...this is a long blog entry!

6 month update:  He just went to his wellness check up and again no health concerns! Here are his stats:

Weight: 14lbs 7 oz (60%tile on Ds chart)

Height: 26 1/2 inches (75-90%tile on Ds chart)

Latest things he has been doing at 6 months includes rolling from his back to his belly!  Yahoo, we were so pumped to see him working so hard to roll over this way!  He grabs at objects in front of him especially his football rattle and mom's hair! :)  He constantly watches Luke!  It's fun to see them interact.  Luke goes over to hug Jack and says, "Hey Jacky...how are you?  Jacky!"  Precious.  He bears weight on his legs when held upright and blows bubbles with his lips which makes Luke laugh.  He started rice cereal a couple weeks ago and just ate his first green beans yesterday!  

Here is the picture I captured of him in the jumperoo on his 1/2 birthday!  Happy boy!

We went to see the ENT last week.  I am thankful that he wants to see Jack every three months to stay on top of his hearing.  Children with Ds have a greater risk for hearing loss due to fluid and ear infections.  Well, that is exactly what we found in his ear, fluid.  He will be schedule to get tubes next Friday, Oct. 4th.  He asked that since he will be 'under' that he would like to look at his trachea through a bronchoscopy because of the continued noises he makes occasionally at night. He wants to see how much inflammation is in his airway.  All of this could make his more susceptible to respiratory illnesses this winter.  The procedure should last about 1 hour and do a number on my anxiety level.  

Times Square and NYC

Our time in New York was amazing.  Honestly, the weekend was filled with so many memorable moments and I can't wait to share them with you!  We (Chris, Jack, and I) flew out Friday morning leaving Luke to be spoiled at Gram and Grandpa's house.  We touched down early afternoon and hailed a taxi for our hotel that was 1 1/2 blocks from Times Square.  Thanks to priceline, I scored a last minute 'name your own price' deal three nights before we departed.  

After our car sick taxi ride, we arrived and found a great place to eat lunch.  We had brought the jogging stroller with us and I don't know if the New Yorkers weren't impressed with it or what but we got a few weird looks.  We used it like our own winnebago and stuffed everything in it and Jack.  :)  When we travel we never check bags (even with kids) and we walk everywhere!  So...after lunch we walked a couple miles and came upon this young lad. 

Uncle Andrew, Chris' brother is in training camp in Hartford, CT so he took the train down to see us.  It was so fun to see him for a few hours and show him the sights of NYC.  We went to the Yankees game that evening and Jack was dressed in his baseball uniform and the fans loved it!  I have always been a Yankees fan and it was so fun to go to a game in New York!

Saturday morning will be a morning I will never forget.  We got up and walked down to the area our group (the other families that were a part of the video) and waited for the NDSS symbol to cue that the video was starting.  Our families were back in the Midwest watching from a live webcam of Times Square.  The area was still buzzing with people and transportation moving about but when I watched the picture of Jack and I on the screen it was as if the world had stopped and my eyes just filled with tears of JOY.  

There was my precious boy.  There was me smiling at him, gazing at him, sharing with the world that he was mine.  I told my friend, Jana, who took the photo, that this picture is so much more than a picture.  That picture captured me gazing upon our precious Jack, who God planned perfectly for our family.  As with any newborn,  you are getting to know who this precious being is, and here was that moment captured as he opened his eyes and locked them with mine.  I am forever grateful for that picture.

After the video played twice we got on the bus and went to Central Park where the Buddy Walk was taking place.  We enjoyed food, fun, and time to meet other families and friends blessed with an extra chromosome.  Kristian was a boy that found great interest in Jack and we got a great picture together!  What a cutie!

Obladi...Oblada...Life Goes On

Right before the start of the Buddy Walk Chris spotted Chris Burke, aka Corky Thatcher, from the TV series Life Goes On.  I LOVED that show back in the early 90s!  Corky was the main actor and has Down syndrome.  I asked him if Jack could get a picture with him and he was more than happy to!  After the walk he addressed the crowd in his old letterman jacket! :) 

Chris and I are all about getting the most out of the vacation so we decided after the Buddy Walk to run back to our hotel.  We figured it's not everyday that you get to run in Central Park so we went for 30 minutes until we had to turn off the park and back into street walking traffic.  We stopped at an Italian Pizza joint and had the most amazing garlic knots for a late lunch!  This girl loves bread and especially if it's covered with garlic and cheese and dipped in red sauce!  Yum!!

That night we were so tired!  We walked to the World Trade Center (picture above with some NYC firemen) from there to Chinatown, Little Italy, and stopped off at Union Square.  We made it back to our hotel after getting some amazing Mexican burritos and crashed early to make the most of the next day.  Sunday was filled with some shopping, Empire State Building, Madison Square Garden, and lunch at Carnagie Deli!  Jack was the best traveler and was quite the charmer on the train.  We experienced a few glances and stares, but mostly smiles at our little Jack.  I will leave that explanation for another post when I can share about our 1st awkward question about Jack and what the response was.  Yikes!  

We continue to be hopeful about our life with Jack and so blessed by him!  I have to share that the low moments I have are NOT because he has Down syndrome.  My heartache comes from how the world views or assumes what my son's life will be like.  The pity and the expression that his life will be a burden to us is what hurts my heart.  I could write another long post on this too...but at this point of my emotional state I will take a deep breath, bite my tongue, and tell myself that we are ALL learning along this journey.  

Step Up for Down Syndrome

On this beautiful Sunday morning we gathered with 7,500+ people in Como Park as we celebrated people with Down Syndrome.  Here are a few of our pics from this morning!  We were honored to be apart of Team Drew, Walking with Will, and Walking with Grace.  These amazing families have impacted ours in more ways than they will ever know!  

Everybody Matters

It's the second week of school and we are all settling into a routine.  The boys are doing a great job at daycare and I am so thankful for the love and the learning environment they are in 2days/wk.  I am amazed how quickly the days at work have gone and get very excited to pick them up!  Thank you so much for those that continue to lift our family up in prayer.  We are getting geared up for our trip to NYC to see Jack's picture in Time Square!  So excited!!

So the phrase Everybody Matters has been posted around my gymnasium for the last 5 years.  In early September 2008, I had heard this phrase many times at the funeral of one of my college roommate's mother who was an ECFE teacher in St. Paul and devoted her life to educating children.  Her family and friends talked about how she loved and cared for her students and their families, that everybody mattered.  I left that funeral encouraged by a woman that I didn't know very well, except through a few conversations, and the friendship of her daughter.  Through her family, career, life, and death I was inspired by how she educated everybody.

As I have headed back to school this year I couldn't help but think of that simple phrase.  Everybody Matters.  Everybody.  What does that mean?  Even the student that constantly interrupts me while teaching?  The student that says hurtful words to others?  The student that is always helpful? The student that never stays on task?  The student that is easily motivated? The student that can't afford tennis shoes for class?  The student that doesn't speak English?  The student that doesn't understand my directions? The student that defiantly misbehaves or has a poor attitude?  The student that answers all the questions correctly?  The student that is developmentally delayed?  The student that is athletically gifted? The student that has a hard home life?

When I became Luke's mom in 2011 I had this overwhelming understanding of this amazing realization...here is a portion of what I wrote in Luke's baby book when he was 1 year old...

Luke, you have helped me realize on a much deeper level that everybody matters.  If I looked at others the way I look at you, I would be much more patient, kind, forgiving, and compassionate.

Through this experience of teaching and motherhood, I have understood that each student I have matters to someone. More importantly, each child was created in God's image.  Ultimately as a Christian I have been told this many times.  He made us, loves us, refines us, molds us, forgives us, and guides us.  If I have this type of love for my own children, I can't imagine the love that God has for all of us.  In a society where we are constantly being told that we have to earn love, we don't deserve love, that love and success is earned by our accomplishments, and many other lies.  I am thankful to have a Heavenly Father that says you were created in my image and I love you because I made you.

At each start to the school year since 2008 I have told each of my classes this...

"Everybody matters.  Each person in this space matters to me and matters to those around them.  If you hurt one of my students with hurtful words or actions you are not only hurting them, you are hurting me because I care about them.  You are also hurting the people that love them.  Your actions affect others and everybody in here matters.  This will be a safe place.  Your classmates may look different than you, talk different than you, run different, throw different, but ultimately they matter.  You have a choice with your words and actions and they are powerful.  They are either either helpful or hurtful.  You decide because EVERYBODY MATTERS."

Ephesians 4:29
Let everything you say be good and helpful so that your words will be an encouragement to those that hear them.  

So I ask myself this today...who do I need to give more patience, kindness, forgiveness, and compassion to and realize that they matter to someone?

5 months...Jack in NYC...Hi Ho...off to work I go...

Wow, five months.  I seriously can't believe that it's been five months since we met our sweet Jack.  I missed the 4 month update...probably too busy watching Luke run back and forth to the potty as we took on the task of getting him trained.  Yikes.  I would personally like to thank Lightening McQueen and M & M's for the motivation to get a 2 1/2 year old boy to go potty!  I seriously thought I would save money not having to buy diapers for him but instead stickers, poster board, iced animal crackers, big boy undies..it all adds up!  :)  

Back tracking to 4 months...

Jack had his 4 month wellness check up and guess what???? NO CONCERNS!!!  Yahoo!  I couldn't help but smile when we pulled out of the parking lot and straight home!  Not to a pharmacy, not to Children's...just home!  

Also, Jack decided it might be fun to get up again a couple times at night.  I am thankful to have journaled a lot with Luke and remembered that at 4 months he was waking up again a lot!  EEk..that's a phase I am glad has come and gone.  Add that to Luke's nightly venture into our room to tell me he has to go potty and we have one tired Mama.  Chris swears that he never hears any of this.  I told him that maybe if he would take the pillow off his head he might hear something.  He explained that he doesn't sleep with a pillow on his head.  I respond, "Wow, that must be a big fluffy cloud hovering over your face then.  I must be imagining things."  One day he said, "Gosh, I am just so tired lately." Ha.  Not funny Chris.

Wednesday mornings we like to go to Gigi's Playhouse.  It's been so fun to have a place to go and connect with other families that have children with Down syndrome.  Wednesday mornings is a play group for 4 and under.  At the end of July, Jack finally met his buddy Drew!  His Mama, Jenny, is a high school teammate of one of my friends, Julie.  Julie and family were over one Saturday night right after Jack was born and she told me about Jenny's son Drew and that he is 7 months older than Jack and was born with Down syndrome.  Then she told me that they live in Seattle.  I was bummed.  They sounded like such a fun family and that we have a lot of the same interests.  Well that next week Julie was getting breakfast in the area and guess who walks in?  Jenny and her sweet boy, Drew.  What?? Julie couldn't believe it!  She had just told me about her and then here she ran into her a few days later and shared our story of Jack with her.  Jenny reached out and said she would be more than happy to talk if I was ready.  So...a few weeks later we were talking for an hour about our boys and how life has changed in so many ways.  At the end of July we met for the first time in person at Gigi's.  I just hugged Jenny and I felt this instant friendship.  I looked at Drew with such excitement that some day Jack and Drew could be close buddies.  We played and caught up on the things we had been emailing, texting, and talking about the previous weeks.  Well...Jenny and I talked two weeks ago and she told me that they are moving back to MN!!  I am so excited and so is Jack! :) 

Jack had his follow up swallow study the first week in August.  Since we learned that he aspirates, we have been thickening my milk to a honey consistency.  I blogged about the initial study here where I explained the steps we have had to take to still give him my milk and get it thickened.  Well, he has improved his swallow!  Yahoo!  He has moved from honey consistency to nectar and we have a follow up appointment in November.  I am still hopeful I can go back to nursing him and that he will eventually not aspirate.  

Jack in NYC!

On July 30th I received an email from the National Down Syndrome Society that Jack's picture had been chosen to be a part of the NDSS Time Square Video that will be played on September 21st.  The picture submitted was taken by my life long friend, Jana.  She captured this moment of me looking at Jack when he was one week old.  I cherish this picture.  

and...this is how I felt when I read the news...

What?  Jack is going to be in Time Square?

On my birthday Chris gave me a gift and it was a New York Mets shirt.  I looked at him confused.  I am a Yankees fan so I had to ask him if we were Mets fans.  He said, "You can wear it in New York when we go in September."  Yeah buddy!!

So on September 21st we will see our sweet baby boy's picture, as I gaze upon his precious face, in New York City. We will watch the video in Times Square and then proceed onto Central Park for the Buddy Walk, walking in honor of Jack and all of the people that were blessed with an extra special chromosome.  God is so good and I am so grateful that this moment was captured and that the world can see just how special his life is.  

Hi Ho, Hi Ho, it's off to work I go...

It's like a light switch that has been turned on.  The minute August got here, my anxiety level went up.  I think it's normal for all teachers to feel a sense of panic as we know our days of 'freedom' are coming to a close and we will be back to another school year.

I am going back to work part time (3 1/2 days/wk), job sharing with a coworker.  I have wrestled these past few weeks with this decision.  I actually cried one Monday night in the Target parking lot as I talked to Tracy about all the things that I was thinking and feeling.  One of the feelings was that I felt like it was expected that now that I have a child with special needs I should be staying home.  I feel as if it relies on me to get Jack's needs met.  It's very hard for me to ask for help or expect others to help me in all of this.  I just would rather do things myself.  I try to down play anything that is important to get done instead of asking others to do them (exercises, routines), only to make up for it when I am with him.  

I know it takes a village.  I know that it's selfish of me to think that I am the only one that can do it.  I need to let go.  I need to let go because I will soon crash at the pressure of trying to do it all.  I need to let others help.  The plan this fall is for Luke and Jack to be at daycare 2/week and at home 3/week with one of those days with Grandpa and Gramma Carroll and the other two between me and Chris.  I am excited for them to learn from others and grow in so many ways.  I wrote Jack's teachers a letter explaining that we see him as our baby first, not a diagnosis, and that he is more like a typical child than most people think kids with Ds are.  I explained that we will parent him as we have Luke when it comes to respect and discipline.  We know it may take more patience and repetition but he will be able to understand boundaries and should have similar expectations.  I also included that he will melt their heart with his smiles and his eyes will make you want to snuggle!  He cuddles like a little bear and his cheeks are so kissable!  They were grateful for the letter and are so excited to have him there!  

I won't even start to summarize what I have learned in the past five months or what this summer has brought...so I will have to leave it all for another post...but I will end with this...I need your help.  I know the next few days are going to be very emotional.  I have been through so many emotions this new journey with Jack and it will be very hard to leave him.  As I head back to work on Monday, please pray that I can let go, knowing that Jack and Luke are in good hands. That I can have peace in knowing that this schedule is what is best for our family at this point.  

What story do you want to tell?

God comforts us in all our troubles so that we can comfort others.  When they are troubled, we will be able to give them the same comfort God has given us.  

2 Corinthians 1:4

This entry is inspired by a sermon by Andy Stanley at Lifetouch Ministries.  It's titled, The Story of  Your Life.  I have listened to it three times and each time I hear something different.  He explains the story of Joseph, how he was beaten and sold by his brothers, servant of Potiphar, tempted by Potiphar's wife, put in a dungeon, and then made king in a famined country.  Years after these life events he was approached by his brothers (who didn't recognize him as king) as they were begging for food.  Joseph had quite the story to tell and he could have written the rest of the story by taking revenge on his brothers for their actions.  Instead he extended grace and forgiveness and wrote the story well.  Andy Stanley focuses the sermon on the fact that each of us have a story and decisions on how we want the story to be written.  No matter what situation we are going through, it indeed, will be summed up as a part of a story.  He drove home the point that each event, dilemma, opportunity, or loss will eventually be summed up in a short story or a few sentences.  He charged the listeners...What story do you want to tell?  What decisions do you want to make to write the story well?

The thing I heard the loudest tonight is that we don't get to choose what happens to us, but we do get to make a decision of how we respond to it.

This past Wednesday night something changed me.  I experienced one of those blessings that K's mom was talking about.  "Jack's life will bless you and others in ways you could not even imagine." This experience has changed my whole outlook on how God is writing my story and using my sweet Jack to change my life and others. 

My phone was beeping with text messages to go on FB and check out a classmate's status.  The previous weekend I had traveled home to my parent's house for a casual high school reunion where a few of us classmates got together and reminisced old memories growing up in a small town and catch up on life as we know it now.  I was very encouraged talking with a classmate that I hadn't seen in over 10 years.  He explained that the past two years of his life he has changed.  He talked so sweetly of his marriage to his sweet wife and how he reflected on choices and behaviors that were not helpful to those around him in the past ten years.  I was so thankful to have this opportunity to hear the positive changes he was making in his life and the impact it was having on his family.  I had no idea that four days after that conversation I would be reading his status update that read like this...

So as many of u know this is usually the hardest week of the year for me, but after an amazing weekend with old classmates who I would like to call friends, and spending quality time biking, yes I said biking with my beautiful family it was an awesome week. For ten years I have been destroying myself and family on this day but today is different, Today it doesn't hurt anymore. Why? Because after all these years I realized it isn't poor me, it's thank you Lord for giving me this day. Whether u get inspiration from songs, books etc, run with it. A 4 month old through his mother's blogs gave me inspiration, and for that I say thank you Jack Carroll, ur mom said you Would change the world and I can't agree more. 11 years ago today I said goodbye to my brother and today I say rest in peace. Love u bro.


After reading this I was an emotional mess.  I seriously couldn't get myself together.  My classmate lost his brother in a tragic accident.  I can't imagine the loss he has experienced.  Reading that Jack's life has impacted him and helped him through a painful experience leaves me speechless.  He didn't choose this to happen to his family.  My classmate is choosing to write his story differently.  His story has impacted my story.  Thank you friend and thank you God!  I am humbled.  

You see, that status from my friend, changed the outlook I have for our lives with Jack.  That status meant more to me than I can even express.  I was very hesitant on sharing our story through this blog.  I was nervous to be so vulnerable in my feelings, especially these early days. 

But one thing I can share is that God has always been faithful in my story.  He has always shown that His plan is much better than mine.  

Everyone's story matters and each of us is faced with events, dilemmas, opportunities, and losses...so what story do you want to tell?

With God's help...I will write this story well.  

Enjoy this day...

I contacted K's mom and asked her if we could go on a walk.  (K has Down syndrome and I had the pleasure of babysitting her and her sisters in college).  K's mom is a go getter type of a person that works hard and I can see it in the fruit that is produced in her and her family's lives.  I needed a 'pep talk'.  After the walk I wrote her thanking her for letting me talk her ear off and a chance to ask her all of the questions that I have had consume my mind lately.  A part of her response was, "Enjoy this day."  Such a simple statement.

Enjoy this day.  

One of the areas I talked with her about is the fear that Jack won't be able to talk.  One of the reasons that this fear came is after having a couple of people come to me and share their personal experiences with people with Downs.  They were trying to be comforting sharing their stories but every time it included a part where the person they know can not talk it was like a knife to my heart.  Some of these stories came within the first week after Jack's birth, some a month, and one just recently.  I know that communication can come in so many forms, but I am fearful that Jack won't be able to communicate verbally. I know that this is NOT the case with all persons with Downs, and that many can speak and some very clearly.  It just happened to be the thing that I heard the loudest when listening to these particular stories.  Just an FYI, when a new diagnosis has been given to a family, sharing comments about a child not speaking, being completely out of control, defiant, or stubborn, are not always helpful because if they are like me...I am not always pondering the wonderful things my child is going to bring to our life, but more the things that are going to be challenging.  Maybe save those things for a little later when they have gotten a chance to understand more about Down syndrome.    

A friend of mine shared a sermon by a pastor from Willow Creek church in Chicago.  The title of the message was, Being a parent of a special needs child (June 30th).  He talked about his journey of having a child with Mosaic Down syndrome.  He stated that one of the biggest fears of having a child with special needs is that our child will be invisible to the world.  It's true.  I have wondered that when Jack gets older, no longer a baby, will the world still accept him?  Our society values people on their abilities and my son will have a developmental delay.  Being a baby, so cute and cuddly, will others accept him when he is 16 and will need more time to complete simple tasks?  Will they slow down to see that he matters to me, to those around him, and especially to God?  Will they know he was created in the image of God and brings glory to His kingdom just the way he is? 

Enjoy this day.

I just read this yesterday (July 19th) in the Jesus Calling devotional.  I will paraphrase the parts that hit home for me.  

Bring Me all your feelings, even the ones you wish you didn't have.  Fear and anxiety still plague you.  Use your shield of faith to extinguish those flaming arrows.  Affirm your trust in Me, regardless of how you feel.  Do not hide from your fear or pretend it isn't there.  Anxiety that you hide in the recesses of your heart will give birth to fear of fear: a monstrous stepchild.  Bring your anxieties out in the Light of My Presence, where we can deal with them together.  Concentrate on trusting Me, and fearfulness will gradually lose its foothold within you.  

I have always trusted God, knowing He has a perfect plan.  But this has made me realize how much I let fear seep into my mind and stray me from His path. It has made me try to look ahead to months and years and He reminds me through a simple text message, ENJOY THIS DAY.  

K's mom shared with me on that walk that K was chosen to speak at a Young Life golf fundraiser.  She prepared her speech and delivered it to a room filled with very wealthy old men.  She had 3 main speaking points in the speech which included that Young Life has made a huge impact in the three following ways.  1. She has fun, 2. has met new friends, and 3. learns and talks more about Jesus.  She finished the speech sending the grey hairs off to their last 9 holes charging them to...have fun, meet new friends, and learn and talk about Jesus.  The room went wild!  

Three months old

                                            
Sorry for the delay in the post...we are remodeling the bathroom and it's been late nights working...I am hopeful to share about Jack's dedication and the beautiful morning it was...so stay tuned!  Here is a general overview of what the past month has looked like...

On June 25th, Jack turned 3 months old.  Luke turned 2 years and 3 months and he has officially entered the world of tantrums and meltdowns.  I could feel the stares of those around me as I disciplined Luke after he darted from the elevator to the escalator while I was pushing the double stroller in the mall last week.  He is still trying to figure this new transition of having Jack in the family.  I have tried to spend one on one time with Luke because I know he is trying to do his best to adjust as we all are...along with being a toddler.  We have some sweet, tender moments but it's amazing how a meltdown can suck the energy out of you.

Well in the past month we have had a few appointments that have helped us explain some of the concerns we were having.  He did the swallow study at Children's and it was confirmed that he does aspirate.  Easiest way to explain it is that when he swallows it doesn't always go down the right 'tube' and when he aspirates it goes down his trachea and could go down into his lungs and likely cause pneumonia.  The speech pathologist that did the study told me that what we have to do is thicken his milk to a honey consistency to prevent aspiration.  After she told me this she continued to say that it was hard for her to tell me but there is not something out on the market that is safe to thicken breast milk.  The two products, thick it and simply thick it, was recently taken off the market for causing infections in infants and no longer safe.  I looked at her with disbelief.  What?  You are telling me that I can no longer give him my milk?  All I could envision was our deep freeze that is over flowing with over 3 months of frozen milk.  I had worked my tail off pumping so that if Jack wasn't still very strong at nursing (he burned more calories than he took in) that I could have enough milk for him for months after I decide to stop pumping.  My eyes filled with tears.  I had accepted the fact that I was only nursing him 1/day and the rest pumping and now she is telling me that I have to stop giving him my milk all together.  She suggested that we switch to formula and rice cereal.  I would have been fine with this decision if I hadn't put so much work into the past two months and able to give him the benefits of breast milk.  I had to believe that there were moms out there that would never give this up so I did a little research.

After a couple days of searching the internet for a safe thickener I came across Gel mix.  It's an organic thickener made from Carob bean.  I called Jack's doctor and he said he would look into it.  After doing his own research he said he couldn't recommend it because it hadn't been out very long (less than 5 years), but that he couldn't see anything wrong with it.  It's USDA approved and he could understand if I chose to use it.

So after 4 weeks on it, I can tell that he is getting stronger.  It is a process to get a bottle ready but I can tell it's helping.  With getting bigger and stronger, I am hopeful he will no longer need the thickener down the road.  A blessing in disguise with this whole thickening is that it is helping his muscles with his swallow and which I was told can help later with speech development.  We have an appointment at the U of MN next week with another speech pathologist that gives us information on more things that can help his swallowing.  It's called a feeding clinic.  When the doctor was suggesting we do speech...I kind of looked at her and was thinking...Lady, he's only 2 months old...I don't think he is going to say much right now.  She was referring to swallowing...gosh, I am learning a lot!  :)

The occupational therapist comes out 2/month and also his ECSE (early childhood special education) teacher.  The local school district provides services from birth-21 years of age and I called them when Jack was a week old.  At this age, they work on anything from neck strength, rolling, holding, supported sitting, etc.  His ECSE teacher is helpful in reaffirming his growth.  Both of them have said that he is doing great and that he is definitely strong.  They were also amazed that he was rolling over at 6 weeks!  He continues to get stronger, rolling over numerous times throughout the day, spending time on his tummy, slide line laying, and holding and grasping things.

We visited the ENT on the 13th of June.  It was a very good appointment.  Luke actually saw Dr. K for his tubes when he got them at 15 months.  He explained what he would be looking for and also what he saw from the report of the swallow study.  He said that Jack didn't aspirate that badly and that he thought that he has potential to get stronger in the 8 weeks before our follow up visit and could get back to nursing.  He had to put a scope down his nose to see about the reflux, laryngomalacia, and snoring.  He said that it was a little irritated from the reflux and that he will grow out of the laryngomalacia.  He prescribed Prevacid for the reflux and a nasal spray for the snoring.  Both of them have significantly gotten better so we are so excited to see the progress.  Dr. K has worked with many kids with Down syndrome and wants to see Jack every three months to monitor if there is fluid in his ears and check his ear drums (his ears were too small to see anything) as hearing loss can become a factor.

I have come to understand that each doctor has their recommendations but ultimately we have to make a decision on what is best for Jack.  I truly respect the doctors we have worked with so far, but I also know that unless they have worked specifically with Jack on numerous occasions, they are going off their experience and some generalizations.  I don't think I would ever have formulated this opinion two years ago with Luke.  I was a first time Mom and I just believed everything to be true and followed everything they said.  But I do believe that as parents we have a right to share our feelings if something doesn't feel right.  I left the swallow study thinking I didn't have any other option and had to make the change, and then after a day I got kind of angry.  I got frustrated and thought, I am going to see what is out there.  I asked a few other Moms what they did, what they thought, and what their advice would be.  Sometimes it's best to ask the professionals...Moms!

Some have asked how I am doing.  I think they are mostly referring emotionally.  I have had some really great days.  Jack smiles a lot which melts my heart.  He loves to cuddle his head right on my shoulder.  I will catch Luke going over to Jack and resting his head on him and giving him kisses.  It's adorable.  I am falling more in more in love with Jack and I really can tell you that he is the sweetest baby!  He rarely ever cries, if he does it sounds more like a cat's meow.  It's cute! :)  He is an amazing sleeper...I know this is such a gift...he has been sleeping for 6+ hours for the past two months. He usually goes to bed around 8:30 and wakes up around 5:30am to eat and then sleeps until about 8am.  This has all played into the emotional piece.  I don't function well on little sleep.  We have enjoyed the summer with play dates, going to the park, coloring, playing catch, hanging around the house, time outs (ugh...not fun), and swimming!  I am excited to meet and connect with a few families with kids with Down syndrome this summer too!

I have LOVED running!  Honestly, the time early in the morning, when the city is not awake yet, the sun is shining, and the quietness has been amazing.  I listen to my favorite KLOVE station on I heart radio and it's a time of worship for me.  This gives direction to my day and strength for the daily climb.

Here is one of the songs I ran to this morning...just gave me such encouragement and I hope it does for
you too!  There are times that I doubt the ability I have to be the best Mom to Luke and Jack.  I often go back and read the comments and encouragement that we got right after having Jack.  Many people expressed that we were the best parents for Jack, that things would be fine, that God chose us for him.  Sometimes those words helped me believe in me when I didn't believe in myself.  Thank you.

Remind me who I am by Jason Gray.

May we always remember who we are to Him...Beloved!

Be strong and courageous.

This Sunday we are dedicating Jack at church.  Child dedication at our church is an opportunity for Chris and I to publicly commit our desire to raise and submit Jack to God's will and raise him according to God's Word.  We have been talking about what verse we would like to choose for him and Chris shared Joshua 1:9.  After reading it again and again, I couldn't help but reflect on who Jack and Luke's Daddy is, and why he chose this verse for Jack.  

I have mentioned a few times just how strong Chris has been with everything that has gone on with Jack.  There are numerous times I find strength from my conversations with Chris.  There have been a few particular conversations that stick out to me.  One being the second day of Jack's life.  I could tell that Chris just needed to go for a run.  After almost 7 years of marriage, I know when the guy needs to run.  A few of my friends were going to be coming to the hospital and I actually told him that it was time for him to run.  (He runs 5-6 miles a day...and it's not just a jog...it's a hard run)  Later that night when the visitors had left, he told me that on his run he realized that he GETS to raise Jack.  He says to this day he knows the exact spot and house he was in front of, the point in the run where he just got this overwhelming feeling of peace and affirmation that he is so proud to have Jack as his son.  

                                                     

Another conversation that I was so encouraged by was when a few coworkers willingly came over to babysit Luke and Jack so we could go on a date.  We headed out to a resteraunt and had such a great conversation.  It amazed me that through the 4 weeks of Jack's life, I had had so many conversations with others that I found myself finally checking in with him and how he was feeling.  I asked him what he envisions Jack to be like when he is older.  As thoughts of difficulties flooded my mind, my sweet husband had this comical senario in his.  He told me that he is so excited to see what Jack's personality is going to be like.  He said, "You know he is going to have a little bit of both of us in his personality and sense of humor.  I am imagining him entering the CDC (the daycare Luke goes to) and seeing the preschool teacher, Mr. F, and watching Jack extending his fist out so Mr. F could pound it."  Oh my goodness.  Are you serious?  Here I am thinking of all the help I will have to provide to Jack and my husband is across the table imagining our little guy giving fist pumps to his preschool teacher.  I love this man.  

I received an email from Chris (from work) on April 24 (one month after Jack was born) and it was regarding journal articles that Chris had been reading about research done on children with Down syndrome.  For those of you that don't know, Chris loves learning.  He just recently finished his Ph.D in Applied Kinesiology from the University of MN.  So reading journal articles excites him, and especially if it is in his area of interest.  These articles were written on Treadmill training on children with Down syndrome and their gait for walking.  Not only did he read the articles, he email Dr. Ulrich at the University of Michigan to talk about his findings and what he can do with Jack.  This email went out during the heart of the semester for both of them, finals, presentations, etc...and Dr. Ulrich called him back.  The two of them talked in their Ph.D language ;) and after 20 minutes, Chris hung up the phone with excitement of what exercises he can do with Jack.  They talked about Dr. Ulrich's latest research, on an infant's walking reflex, and how to maximize muscle contraction in Jack right now.  As a Mom, I can't tell you how much those first initial emails meant to me.  The stress lifted off of me.  To know that I am not alone in trying to help Jack be as successful as possible, to have a spouse that is just as determined (actually he is MUCH more) to defy the odds and to celebrate the accomplishments is the best gift.  I am challenged and encouraged by Chris.  

                       (Chris and Jack working hard...sorry it's sideways...didn't know how to turn it)

James 1:2-6

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. 

Chris coaches hockey at the college level and the head coach and Chris meet with players frequently and talk with them about things much more important than hockey.  They talk about adversity, integrity, being men of character, their relationship with God, and so much more.  Chris said that he told Charlie that all of those meetings that they have had with players was God preparing him for a time when we received Jack's diagnosis.  Lean into it, choose joy, and praise God.    

This verse is suppose to be for Jack.  His life verse.  In a world that doesn't always accept those with disabilities, I often get discouraged thinking about how people will treat my sweet Jack.  I have to admit that the more and more I read it, I think it is a verse that I need to cling to in MY life.  It's a verse that my husband lives.  He breathes discipline and determination, in everything he does.  Through all of this, the most thing I am thankful for is my husband's love for God.  I am realizing that the reason he doesn't get terrified or discouraged is because he knows that God will be with us wherever we may go.  

With Father's day this weekend, I can't thank God enough for my husband, who is strong and courageous.  And pray that my boys grow to be just like their Daddy.  

Two month appointment and Jogging for Jack

Psalm 46:10 Be still and know that I am God.

So I am kind of exhausted.  I had to go back to work these last two weeks of school because of insurance, but thankfully it's part time.  I know that we are blessed with a good sleeper and 9 weeks is longer than some Moms have had, but I am still tired.

We had Jack's 2 month appointment last Wednesday.  Here are Jack's stats:

*Weighed in at 9lb 8oz, 50% on Down syndrome chart

*Height is 23 1/4 inches, 80% on Down syndrome chart

There are a few concerns that I brought up which made the appointment a longer one...but no immediate trip down to Children's so that is a positive! :)  

Jack has always been a noisy eater, gulping and gasping.  He gives my heart a huge jump whenever he coughs while eating as it brings me back to his brief stay in the NICU.  Well my friend mentioned to me that he sounded like he had a condition that two of her children had.  Laryngomalacia. When she mentioned it to me I wondered if she was speaking English.  Laryngo...what?  So I had her write it down and also watched a youtube of a child displaying it, and yes...Jack has it.  So we are off to the ENT to see the severity of it.  Most children grow out of it and I am hopeful that Jack will too.  At the ENT they will also look into his snoring sleeps possibly needing a sleep study.  

Okay, so this is where I reveal again that I am kind of 'over the top' when it comes to planning/controlling or what I would define as 'setting us up for success'.  Ha...:)  I asked Jack's doctor that since reading Babies with Down syndrome and talking with other Moms of kids with Down syndrome, I became aware that they are prone to having numerous ear infections which sometimes leads to hearing loss and speech delay.  So with this knowledge I proceed to say, "Do you think after the first ear infection Jack gets, can we just go ahead with the tubes?  It was a long winter with Luke and we waited until the protocol of 3 in 3 months...so to avoid that, knowing it's very common...can we just get the tubes right away?"  He laughed at me.  I actually think that he thought I was joking.  As I drove out of the parking lot, I kind of realized what I was asking.  It was like I was asking him for a prescription for eye glasses when he has not shown any signs of needing them but because I read a book or seen other children with Down syndrome with them...Jack must need them too.

I know I need to relax.  I know I need to understand that just because Jack has an extra chromosome, it's a syndrome and not everything that is common in a few children means that he will have it.  I know I need to trust and stop thinking that I am going to miss something that will be extremely detrimental to his development.  I still carry this weight of stress that if I don't read this book, or do this exercise, or look into this or that, he will be deprived of something.  I often have an attitude of: effort = outcome.  I know this is true in some things, but Jack has Down syndrome and I can't change who God created him to be and a lot of things I will have to rely on God for many uncertainties.  Oh how He is pruning me for totally reliance on Him.

Be still and know that I am God.

This Tuesday, June 4th, we go for a follow up on his stomach and see the GI doctor at Children's hospital.  They will look at his abdominal area again.  We then go onto the swallow test to see if he is aspirating while eating.  If he is, then we will have to thicken my milk and make an extra step to the feedings.  I am thankful to get some answers but know that things can change very quickly.  I was reminded of this when reading 47 strings author 's blog that her daughter with Ds was recently told that she has Myelodysplastic Syndrome.  She more than likely will need a bone marrow transplant.

These appointments are exhausting but something that is more exhausting is calling insurance when we get bills in the mail.  With a lack of sleep, I start out a conversation with the rep very calmly, but when things don't get anywhere and after 20+ minutes on the phone, I start to lose my patience.  Mostly all of the outcomes have been about a referral being needed and a lack of communication between provider and benefits...but honestly, I have gone postal on a few people.  I am tired, I am exhausted, and I am trying to find the joy in these things.

On Mother's day there was a video shown at church and it listed all types of Moms...Moms of small children, Moms of adult children, Moms that have lost children, Moms of children with special needs.  That's me.  I am now a Mom of a child with special needs.  I sometimes still ask myself if this is real.

Jogging for Jack: Gigi's Playhouse

My friend Katie and I haven't run a marathon since 2009 in which we did 3 in that year.  We desire to do so many more yet in this season of babies we haven't raced in awhile.  We just recently did a 5k as a part of a friend's 30 events for her 30th birthday.  It felt great to run again together.  So I mentioned to her that there was another run on June 8th that benefitted Gigi's playhouse.  GiGi’s Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community.  All of the services are free and they are located all over the world.  I am thankful to have one right her in the Twin Cities.  Well here is the page she put together and I am so grateful for her love and support of such a great cause!

http://gigisplayhouse.donorpages.com/5K2013TwinCities/KatieBjorklund/

Hey Friends!! 

Thanks for visiting my personal fundraising page! About two months ago I was introduced to a very special boy, Jack Carroll who was born with Down syndrome. He is the second son of my good friend and sweat sister Carissa Carroll. Carissa and I have run three Marathons together, but on June 8th we will be running an even more important race! Please consider donating to my page and helping a great cause. We all really appreciate your support.

I don't know if Jack will have an interest in running...but I do know that I have an interest in him and he makes his Mama a much better runner!  I love you baby Jack and I'll jog for you always!  

I have called you by name; you are Mine.

 I have called you by name; you are Mine.  Isaiah 43:1

As I was rocking Jack to sleep last night, I glanced over at the picture frame that was given to me from a friend that had the above verse written on it.  I came to realize that this was the same exact verse I had read early that afternoon in a devotional.

I have called you by name; you are Mine.

The devotional was emphasizing that each of us were created with a purpose and when we fullfil that purpose we are bringing glory to God.  Reading this verse yesterday afternoon and then again last night while listening to Jack breathe in and out, feeling his chubby cheek against mine, such soft skin, I couldn't help but thank God that Jack is our child and most importantly that God knew his name and who he was before we did.

Jack William Carroll.

I think that naming a child is a very hard task.  It seems especially hard if you are a teacher and a coach.  Many names are off limits as past students or athletes make a name definitely out of the question.  With both of our pregnancies we wanted to see the boys before naming them.  I really didn't know if we would actually name our children because Chris and I couldn't agree on one.  I would write in my journal...what will your name be?  I hope we can come up with one.

I am surprised it wouldn't be easier as I have been writing down names of kids since I started playing the game MASH as a child or when I met Chris.  What name goes well with Carroll? Come on girls, it's not like you haven't thought it.  After putting your own name with his and agreeing it sounds perfect, you move onto...and what kid names would go well once we have a family. :)

We agreed that the middle name of the options that were in the running would be matched with a family name.  Luke's middle name is Henry after my paternal Grandfather.  He was a very special man in my life.  We knew the minute we saw Luke's long fingers and toes that he had displayed the Nieuwboer genes and it reminded me of my Grandpa Henry.

After the emergency delivery and finding out that Jack had Down syndrome, initially we had a hard time naming him.  To be honest, I envisioned that Jack would look more like Luke.  I thought he would have blonde hair like Luke, and he came out with dark hair like Chris.  When I was told that he had Down syndrome based on his physical features, I thought there was no way he could look like our family.  Which made me think the name I thought I was confident in would not be fair to him because that was not the baby I had envisioned.  This name that I was sold on was not fitting for him.  That night we went to sleep and he was Baby Carroll.

Throughout the next morning I would look over at Chris and ask him, "What are we going to name him?" Every time we talked about him, it was Baby boy, or Baby Carroll.  I said to Chris, "We need to name our son, he deserves a name.  I don't think it's fair to him that we don't know his name."  But God knew him by name.

We went through the list of the four we were considering and when I said to him, "Jack William Carroll" it just felt right, just perfect.  William is after Chris' father, a caring, compassionate man.  Jack is a name that I have loved and felt like it also went well with Luke.  Another strong traditional name.  Immediately after naming Jack, I could feel this sense of pride, the stress lifted off of me, and I could look at him with a sense of ownership.  This is my baby, Jack.  You are mine.  You are Mine.

The first Nurse that came into our room that called him by his name I knew that it fit him perfectly.  When we told our parents his name you could see the excitement in the news.  Just a proud moment.  It was so great to see the loving response and tearful expression after Bill heard what Jack's full name was.

I absolutely love his name.  I know that he will be a strong boy that will be caring and compassionate, just like his Grandpa.  But mostly I know that he is mine and more importantly he is God's.

I have only known him for eight weeks and I have loved learning and watching him grow.  This little boy has helped me realize what my purpose is in life and with that, God will be glorified.  What gives me peace is that God knew Jack before he was even thought of, as he was being perfectly knit in my womb, before he was named, and he knows what Jack will do in his life, and in all of our lives.

My heart hurts to know the reality that some babies that are created with Jack's extra special chromosome are not given a chance at life.  There is a startling statistic that 92% of babies diagnosed with Down syndrome in utero are terminated.  92%.  Three of my friends were told that they would more than likely deliver a baby with Down syndrome based on measurements, indicators on ultrasounds, and additional tests.  None of those three families delivered babies with Down syndrome. The surprise of Jack having Down syndrome was hard, but just a change of course for us.  It wasn't a surprise to God that Jack had Down syndrome.  A friend of mine shared a devotional she had read when we were going through the emotions and the shock of the news.
The "Trust in Him" thought for the day: What are you afraid of? No matter what you are going through, it's no surprise to God. He's not unsure of what's around the corner or unprepared for whatever you're going through. Put your trust in Him and be confident in His plans for your life.

I know there will be challenges at times but what parent doesn't experience challenges raising children?  I have never questioned God, asking Him, "Why us?"  We have been equipped to give him the best life and we rely on strength and guidance from God daily.  Each day Jack reminds me more and more of what Luke was like as a baby.  Oh how I was so wrong that things would be remarkably different.

I do know that Jack is a gift to me, to our family, and he WILL change the world.  Jack's name means God is gracious.  I am so thankful He has been gracious to us in giving such a blessing in Jack and I can call him mine.

Here is the link for the slideshow of Jack's newborn pictures and our family.

I GET to be the one to raise this sweet baby boy...Jack William Carroll.

http://vimeo.com/66071538

PSALM 139:13-14

For you created my inmost being;

you knit me together in my mother’s womb.

¹⁴ 

I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.