unexpected JOY...

I love this time a year. I love the excitement that Christmas brings out in people and I especially love the sound of kids singing Christmas carols proclaiming the birth of Jesus Christ.  This time of year brings back so many memories of programs, caroling, family, and presents.  

I have come to realize that many people go into the holidays dreading them.  I am not sure if it's the preparation for guests, the demands of perfection (placed on by others or themselves), the baking and cooking, the hustle and bustle, or the years of not being appreciated for their hard work...but I remind myself that Christmas is to be about God's Son, to share in the celebration of His birth, and to acknowledge the gift of His life and how it changed everything.

I started this Christmas season with a very special invite from a friend I had met this summer that happens to have an extra special chromosome in her family.  Her daughter, Molly, was also diagnosed at birth with Ds and we met through a mutual friend.  D sent me a message and invited me to come hear her speak about life with Molly at the Christmas women's event at her church.  The title of the women's program was Unexpected Joy.  

As I listened to D talk about her story I shed tears for many reasons.  Some were because my family also knows the pain of getting a diagnosis in a way that was not done with tact, professionalism, and tenderness.  (D's husband was asleep on the couch next to her when they talked to her).  Other tears were for thanksgiving in having a Godly woman express some of the same feelings I had when receiving the news, the news that was not expected.   I had tears of healing, hearing again that I am not alone in the thoughts I have when raising a child with Down syndrome.  I had tears of relief hearing that there was a time she had to finally ask her family and close friends for help...as we are both the 'do it yourself...pull up your boot straps' kind of women.  Tears of gratefulness as I hear how much JOY that Molly's life has brought to her life and those around her.  Could she have imagined the amount of  JOY she would have when she heard the diagnosis 2 years ago and her world changed forever.  I also had tears of thankfulness as I think of my sweet Jack and how his life brings me so much JOY.  

Unexpected Joy.  

There was another woman that experienced Unexpected Joy a long time ago...her name was Mary.  This young virgin girl, engaged to be married to Joseph, told she would carry a baby, and she would name him Jesus.  What...what?  Talk about news of the unexpected.  Not what Mary had envisioned when she was dreaming of her future...and how would she tell her fiancé, Joseph?  And Joseph...how does he respond to the unexpected news that his soon to be bride is pregnant.  How is he to believe such a story that an angel came and told her she would be pregnant with the Messiah?  Not exactly what he had planned for himself, I am sure.  But they both responded...obediently to what God had planned for them. 

What if they wouldn't have responded?  What if Joseph would have left Mary and decided that he was to marry another?  He would have missed out on the biggest event in his life.  What if Mary would have not been willing to carry the child and not been obedient to the God she loved?  She would have missed out on being the mother of the Savior of the world.  

I think of the Innkeeper.  The guy that told a man and his fiance, a woman that had just traveled on a donkey at 9 months pregnant, that he had no room for them.  How did he respond when he realized he just turned away the Messiah, Jesus Christ, the King of Kings, the Prince of Peace, the Great I Am.  

Jason Gray writes a song from the perspective of the Innkeeper.  

Rest (The Song of the Innkeeper) 
I found them standing in my door
In the clumsy silence of the poor
I've got no time for precious things
But at least they won't be wandering
If they're sleeping on my stable floor

There were no rooms to rent tonight
The only empty bed is mine
‘Cause I’m overbooked and overrun
With so many things that must be done
Until I’m numb and running blind

I need rest, I need rest
Lost inside a forest of a million trees
Trying to find my way back to me
I need rest

As a boy I heard the old men sing
About a Kingdom and a coming King
But keeping books and changing beds
Put a different song inside my head
And the melody is deafening

I need rest, I need rest
Like a drowning man in the open sea
I need somebody to rescue me
I need rest

To Rome we’re only names and numbers
Not souls in search of signs and wonders
But we're waiting for the day of our salvation
The messiah who will be our liberation
We’re waiting, I’m waiting

I need rest, I need rest
Oh come oh come Emmanuel
With a sword deliver Israel
I need rest

Tonight I can’t get any sleep
With those shepherds shouting in the streets
A star is shining much too bright
Somewhere I hear a baby cry
And all I want is a little peace

How many of us will miss the greatest thing that could happen to us because we don't respond?  How many of us will not respond in faith to God's plan when we receive the news of the unexpected?  How many of us are going to miss out on the JOY...the Unexpected Joy?

Christmas Poem by Amena Brown
unlikely situations :God often interrupts our expectations and births His plans in the most unlikely situations.

Merry Christmas! 

8 months...give thanks in ALL circumstances...get after it

Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

 I Thes 5:18

Yesterday we captured Jack sitting up for at least 20 seconds all on his own.  It felt like a minute because I screamed to my sister to take a screen shot since we were on face time having a great conversation and she managed to capture this picture.  He did it!  The screeching excitement from Renee and I probably made him freeze in position before he toppled over! :) He has been working so hard on his core muscles at OT and PT and I am so proud of him.  I have signed up to be his biggest encourager and I can't help but to be beaming with excitement for him.

We had a big appointment this past Wednesday at Children's as Jack had his EEG.  We were concerned about him shaking his head back and forth for a few seconds.  It would happen occasionally throughout the day.  I was able to catch him doing this once on a video and we sent it to the doctor.  She ordered an EEG and to be completely honest I have been so worried about it for the past couple of weeks.  I wouldn't openly come out and explain my feelings, or I should say fears, but it was coming out in a variety of ways, take for example, snapping at those around me.  I was on edge.  Fear will make you act in ways you are not proud of.  Fear, I could personally define as my decision to have a lack of trust.  I was again putting trust in myself and not asking God to take my fears and give me peace about the results of the test.  Its a trend of mine, to try and control things or think of possible outcomes, so that I don't allow it/them to hurt me, or better yet surprise me...because I was already prepared for it in my head.

"Lord, I realize you gave me a huge surprise 8 months ago, but how quickly I forget that lesson."  

Trust and let go of the control.   

Thankfully the EEG was around the time of his morning nap so he slept like a champ considering he had 15-20 electrodes stuck to his head.  I thought he looked pretty cute with his new dreadlocks! :)  The test took less than 45 minutes and we were down to get his blood drawn for the thyroid test after that.  We are still anticipating those results.  

 *ps...I hate it when they have to take his blood*

On Wednesday afternoon I went for a run and I was on the home stretch when the message I was listening to was over.  I decided to listen to some music and as I posted before, one of my favorite songs is Lord, I need You by Matt Maher.  A couple minutes into the song I received a phone call pausing the song.  Just as I was confessing that I was in need of the good Lord, I was hearing the nurse say that Jack's results from his EEG came back normal.  I had to pull my ear buds out, put my cheek up to the phone, and ask her if I heard her correctly.  His results for the EEG were normal?  The EEG and not the thyroid?  She explained that the doctor got the results back and she was at home and wanted the nurse to call us and tell us the news.  I was in tears as I made it back to our house!  I was so excited to share with Chris that the results were normal.  We weren't thinking we would know for at least a week and I was so grateful she called with the results...just in time for Thanksgiving!

So...give thanks in ALL circumstances...

I have read this verse many times before, but my heart understands more of what it means when it says ALL circumstances.  When things don't go as planned, do I still give thanks?  I asked this question Wednesday when I received the news that Jack wasn't having seizures, would I still thank Him if he did?  Or is this something I only give thanks for when receiving the things I want?  This leads me to think about adversity and can I truly say that I thank God for it?  I am thankful to say that when reflecting on the adversity that I have experienced so far in my life I can say I am very thankful for it for it as it's prepared me for this season of my life.

GET AFTER IT...

So speaking of adversity...Chris came home a month ago and said he talked to his players about adversity.  He told me that he felt it was important to speak to them about how we experienced the news of Jack having Down syndrome.  He was starting to notice that after the first two weeks of practice some of the guys were showing frustration about their roles on the team and their playing time.  He was seeing how that was effecting the dynamics of the team and decided that he could challenge them with an example of facing things that don't go as one might initially expect.  He explained that everyone has a choice and it comes down to the heart.  Are you going to GET AFTER IT and lean into it?  He expressed to them that one day in life they will face things that are much harder than playing time and chemistry class.  What they are faced with today will prepare them for the difficult things that come their way, IF they choose to GET AFTER IT.  When Chris was asked, "Are you familiar with Trisomy 21?" there was initial fear, confusion, and grief of what we thought...but we had a choice.  If you know Chris at all, he doesn't just do things...he GETS AFTER IT.  I expressed this in this blog post in June, but in summary he remembers the exact place where he was when he realized that he GETS to raise Jack and from then on has fully accepted him for the person God created him to be.

So in this season of thanksgiving...I give thanks in ALL circumstances...for the adversity that prepares us for something far greater...and for a husband that encourages me to GET AFTER IT.

7 1/2 months...Speak what is true.

Luke 6:45

What flows from the mouth is a reflection of the heart.  

  

It feels like such a long time since my last post.  Hockey season is in full swing for Chris and I have been trying to balance the part time teaching and part time being home and at times I feel like I am playing catch up at both.  But...here is a recap of the past month and a half...

On Oct. 4th Jack had surgery to insert tubes into his ears and also have a bronchoscopy done.  The procedure to enter the tubes doesn't take long but the bronchoscopy took a little longer as they inserted a camera into his esophagus.  It appears that his passage way is narrow and he would benefit from occasional nebulizer treatments throughout the winter.  Dr. K assumes that he will probably aspirate for a few years.  This was disappointing news as I was still hopeful to nurse Jack and say goodbye to my pump (or at least give it a rest), but that doesn't look promising.  So we will continue to thicken his bottles and see what the swallow study tells us in December.  I can be stubborn (or very optimistic ;)) and won't give up until I see it to believe it.

Later in October we went back to the Down syndrome clinic at Children's.  They gave us a very helpful chart of appointments to make and a timeline of when things should be done.  One of those tests was for the thyroid gland.  Kids with Ds have a tendency to develop hypothyroidism (lack of thyroid hormone) and the easiest way to detect if there is a problem is by a blood test.  Well, this mama wasn't so excited about the blood test.  I don't know if the lab tech was new on the job, but after he attempted to take blood out of Jack's left arm and couldn't get enough and then moved to the right one, I told Chris that his turn was up to hold him.  I couldn't watch another minute of the guy poking around a 7 month old's soft, pudgy skin looking for a vein in one arm and then attempting to get more out of the other one.  Yikes.  Well his results came back...and it was 7.2.  Normal range is in the 4s so the doctor asked that he come back in and get it tested again.  Thankfully, Chris could take him in and it sounds like it went much smoother.  The results came back and it was 6.2, so we will have to go back in on November 27th and get one more test so they can see what his normal levels are.  If he does have a hypothyroid he will take medication daily to regulate the hormone.  If it is not taken care of, it can have negative impacts on his cognitive development, joint health, and metabolism.

We also found out today that Jack will need to have an EEG done. We found that on a few occasions he was shaking his head back and forth, almost like he was shivering, just for a few seconds and then it would stop.  I had seen a clip on Noahsdad.com to be on the lookout for infantile spasms and when I saw Jack do this a couple times I thought we might need to bring it up to the doctor.  This test will be done also on the 27th down at Children's.  

I just recently read in my journal from last year that on this date we had found out from the ultrasound that our baby was going to be a boy.  I often reflect on the numerous ultrasounds that I had with Jack, reminding me that if God wanted us to have known he had Ds before birth then some indicator on at least one of the four would have shown something for them to recommend considering additional testing.  God knew that Jack would be our second child, a boy, and created with an extra 21st chromosome.  He also knows what our future will look like and it's a reminder not to be concerned about tomorrow.  

So, as I stated in the first paragraph that I have been feeling a lack of balance with being both part time at home and teaching.  There are times throughout the day that  I keep thinking of how I can be helping Jack get stronger.  This isn't just because he has Ds as I had similar feelings with Luke with it came to his development, activities and routines.  I put a lot of pressure on myself.  A lack of sleep and constant thoughts of what I should/could be doing don't mix well.  Here is an example...the past couple weeks I have been traveling home to see my mom and dad because my mom had a major surgery.  Well I kept thinking that Jack would be in the car seat again for the 3 1/2 hour trip so I was uptight that he wouldn't be working on his exercises.  So my mind starting coming up with ways I could get him stronger in this car ride so I decided to make a stop on the way home and instead of keeping him in the baby carrier I got him out and carried him in front of me so he could work on his neck strength and posture.  Goodness.  I was hauling my 17lb baby in my arms while pushing a cart in the middle of Costco.  Not only could I not get the things in my cart that I needed to but I got a few glances.  Then my thoughts went to...Listen people, my child has Down syndrome and I don't have time or interest in your reaction, we have work to do, so please move aside.  I had a good laugh with a friend after reflecting how crazy I probably looked and it was good to put things in perspective.  I can just hear my sister as she once asked me if I really ever relax.  Ah, sometimes.  

Well, Jack's therapy is increasing and I don't want to have all of my 'at home' time being spent at therapy.  So Chris and I have discussed that I take an additional leave from teaching by taking another day at home.  I am very excited about this, although the decision was hard based on a few things including the amazing insurance that we have through my job, loss of income, and additional expenses with appointments/therapies.  So just when I was anxious about how we could make this work, I received an email from a contact at the University of MN asking if I would be interested in teaching a course 1 day/wk for 2 hours for the spring semester.  This course would be teaching future educators what I do...teach elementary physical education!  God always provides.  He is providing me additional time with my boys which I am so excited about, income for the day I am taking off, and another example of how TRUSTING in HIM, He always has a better plan.

I could write so much more but I will finish with this song that I love.  Here's my heart Lord by David Crowder Band.  Click on the title and have a listen.  Tears streamed down my face when this song was played after communion on Sunday.  I absolutely love the worship at our church.  This song was exactly what I needed to hear.  Do I really give Him my heart and life?  Or do I think I can do all of this on my own?  Do I have more faith in myself than Him? Do I place more value in what the world views as good, worthy, and admirable?  What is it that my heart desires?  Who defines my value?  Is my life my own?  What is true?

I am found...I am Yours, I am loved, I am made pure, I have life, I can breathe, I am healed, I am free.  Because You are strong, You are sure, You are life, You endure, You are good, always true, You are light breaking through.  You are MORE than ENOUGH, You are here, You are Lord, You are hope, You are Grace, You are all I have, You are EVERYTHING.  

Here's my heart Lord.  Speak what is true.

You make beautiful things...

October is Down syndrome awareness month.  A whole month dedicated to celebrating the special extra chromosome that Jack and 400,000 other people were born with!!  Awareness...before having Jack I didn't realize how important the awareness piece was.  When we got Jack's diagnosis at birth, my mind immediately thought of the challenges of having a child with Down syndrome and my own ignorance about what I thought life was going to be like.  I frantically flipped through the books that ended up giving me outdated medical information and pictures of families...one with a mom wearing a corduroy jump suit and a kid with Down syndrome that had a terrible haircut.  I was thinking...how am I suppose to relate?  Is this our new life?  And then the fog lifted and I started to talk and connect with people that were like us.  I started to spend time with their children, realizing that their child was more like a typical child than what I perceived, seeing the joy and love their life brings to so many, that they are reading and writing, working and living independently, in activities, and thriving in society.  Families were still going on vacations, living normal lives...and not wearing corduroy jump suits.  :)

Also, now knowing that 90% of babies that are created just like Jack are terminated in utero, mostly out of fear of what they think it's going to be like, I can't help but share the beautiful things his life has given us so far.  A mom wrote the feelings that are so close to my heart...please take a moment to read her article...

http://sippinglemonade.com/

Beautiful things.

At Jack's dedication in June, I became so overwhelmed with tears of joy.  We were standing in front of the congregation and I listened as Chris recited Joshua 1:9 to Jack and all those present.  I watched as he looked into Jack's eyes intently sharing God's Word and our desire for his life.  My eyes filled with tears.  It was a beautiful thing.

So the title of this blog comes from a song by Gungor, Beautiful things.   

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new

Shortly after we committed to our role and responsibility as Jack's parents, some of our family and friends came up with us and shared in the promise to love and support us as we commit to raising him in a Godly home.  The worship continued and although I have heard Beautiful Things many times, it was more powerful than ever that morning.  The base drum was so loud and so moving that I just couldn't get my emotions together.  But these weren't tears of sadness, they were tears of joy.  Joy for the beautiful things that I have seen God provide through Jack's life.

You make beautiful things.

I have seen beautiful things in how this extra special chromosome has connected us with a supportive, loving, and amazing community of families that share in the joys and challenges of Down syndrome.  I can not believe the love that I have even gotten from complete strangers.  If it's a email message checking in, an encouraging comment or picture of their child, asking about appointments or therapies, or simply affirmation of feelings or thoughts that pass through my mind.  We were just adopted into the best 'club' that we could ask for. They are all encouraging to me.  This is a beautiful thing especially in the early days because you know they have had similar feelings as you and they are telling you how much a blessing your child will be.  Everything that I listened to and trusted back then has shown true and I am grateful for their words.   It really is true...the good moments have definitely outweighed the hard ones.

Could a garden come up from this ground?

I have never felt more love from our family and friends than in the past 6 months.  It's amazing how much support we have received and excitement for what our path will look like in the future.  I have seen relationships strengthened, encouragement and forgiveness expressed, and grace given.  It's amazing how a 6lb 14oz baby with an extra chromosome can unite and put everything in perspective.  We are surrounded by so many blessings in the people dear to us.

Hope is springing up from this old ground.

I find hope in the strength I get from my relationship with Christ.  I have never been closer to God.  It's a daily choice I have to make, allowing Him to have the control.  I have to surrender my temptation to take control and rely on the promise that He has a much better plan for me.  Sometimes I try to take the reigns back, but He quickly reminds me that He can handle it.

He is making me new.

I ask myself if I would have acknowledged many of these things as beautiful things before having Jack.  I would like to think that I would, but honestly I don't think to this level and probably would have written them off as ordinary things.  He is making me new.  I truly have a better understanding of God's love and desire to guide His children.  I have a new found purpose for my life, a deeper desire to be more like Him.  To completely surrender my plans, to truly trust, and appreciate the many beautiful things that God has given me...including Jack's extra special chromosome.

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.