11 months...Jack's basket.

On the 25th of February, we will celebrate 11 months with Jack.  I am in awe of what we have learned in these short 11 months.  Only God knew what this year would look like and I am so thankful He guided us each step of the way.  

Jack got his first haircut!  For some reason I felt this underlying rule that my child couldn't get his haircut until he had his first birthday.  I don't know where I came up with this imaginary rule...but last week, I broke it!  I realized how out of control his hair was and I brought him to see our favorite magician with scissors.  

And in Jack fashion, he charmed all the ladies...like a heartbreaker always does.  

Jack's basket 

I have had a chance to reflect and process Jack's birth and the time we spent in the hospital.  Many of the memories are positive ones.  But I can not forget the negative ones either.  From the way the diagnosis was delivered to the awkward pregnant nurse that was assigned to my room on the last day.  I felt like I had to say, "Honey, it's okay.  More than likely this won't happen to you."  I told my sister that in all of the days that we had stayed there, she was the only one that acted distant and I wondered if that was how it was going to be when we left our cocoon and headed into the 'real world'. Why would you assign an about-to-give-birth nurse to the room where the family just received this unexpected news?  Thankfully, God wrangled my emotions, and I asked her all the exciting questions about her meeting her little girl, where she was delivering, if she had other children, and sent her off with encouraging words.  Glad someone could make the situation less awkward. 

Thankfully I am able to move past the hard parts of our birth story, but I am saddened to learn that numerous families experience a traumatic way of how the diagnosis is given.  One friend said that while her husband was sleeping on the couch, they came in and told her.  Two weeks ago, I met with a mom and she explained that the minute she delivered her daughter, they brought her over to the warmer because she was a few weeks early.  Immediately after she got whisked away to the warmer, without even getting a chance to see or hold her precious baby, the nurse practitioner announced, "This baby has Down syndrome and needs to go to the NICU immediately!"  Not only did this family experience this heartbreaking event, she told me that she felt like they were treated like they had the plague.  My heart hurts hearing this and even more when I realize it's very common.   

I was mentioning to Chris that with Jack's 1st birthday approaching, I wanted to bring something to the hospital.  With being there for almost five days, many of the staff members expressed that Jack made an impact on them.  I am assuming many of them might wonder, what ever happened to that family...the one that got the unexpected news.  My thoughts were leaning towards flowers but the more I thought about the emotions and interactions we had during our stay, I was thinking something bigger and more meaningful.  For us, for them, for families that have a child with Ds, and for a family that only God knows will be given the same news at birth...  

The day after Jack was born I had to ask for information on Down syndrome and someone came in with a white binder that was titled, Down Comforter.  It was an outdated binder filled with general information on Down syndrome including delays our child will experience cognitively and physically, and a bunch of blurry medical information that scared the crap out of me.  

What if a family would be congratulated and presented with a gift?  What if that set the tone, a chance to celebrate a beautiful baby?

I have kept in contact with one of the staff members and I asked her if she would be willing to talk to her manager about an idea I had.  To celebrate Jack's birthday and life, I was hoping to create a basket and have it given to the next family that will get a diagnosis of Down syndrome at birth.  The basket will contain the following items: a personalized letter and picture from our family and two others that are raising their children with Ds, Jack's favorite rattle, a couple toys from our PT (she wanted to donate a few toys after she heard of the idea...love her), and an adorable onesie for the new baby.  I know that the family might not be ready to accept this gift at first, but to hear the news, "CONGRATULATIONS" will be something they reflect and thankful for when their child steals their heart.  To get this gift and read of families thriving with children with Down syndrome, I am hopeful this will be the first of many of the unexpected blessings that their child will bring them.  

I got a call back from her the next day and she said that her manager responded saying that the hospital would be honored to be able to give Jack's basket to another family.  I asked how many babies were diagnosed last year and she reported with the number two.  So...we will be delivering two of Jack's baskets, the day before his 1st birthday!  

As we finished the conversation on the phone...she asked, "Would you ever be interested in coming to a staff meeting and sharing a family's perspective of receiving a diagnosis at birth?" I can not express how confidently I answered, "Absolutely, I would LOVE to do that." 

Jack, I can not tell you how much you are changing the world.  Tonight, I am reminded of your life verse...and love how you and your extra special chromosome are teaching me to be strong and courageous.  

God, you are so faithful and so good.  

*A few additions have been made to the baskets since the first baskets were delivered.  Resources from DSDN, Gigi's Playhouse, Help Me Grow, and the book Unexpected are included.  A violin cd, blanket, hat & booties, and additional items have been donated to fill the gift basket and help families know their child is already loved!  

**Since this initial blog post, Jack's Basket has gone to all of the Twin Cities hospital birth centers and are also sent across the United States.  You can find more information on our Facebook page titled Jack's Baskets and stay tuned as we are working on a website for Jack's Basket!  

If you are interested in giving a tax-deductible donation to Jack's baskets and getting them in the hospitals, please click the yellow DONATE button at the bottom of the page. We can not thank you enough for the support! 

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10 months...I want to see you be BRAVE!

Jack's thyroid appointment went great!  It's so awesome to meet a doctor that comes in and goes through a series of questions about his development, milestones, and finishes the appointment sharing that she thinks our kid is a rockstar!  Plus, when she entered the room, he was flipping through his book...so I think he impressed her with his reading skills.  :) We are a little bias...but we do think he is a rockstar!

It was discovered that after a month of being on the thyroid medication his lab results came back low, so she reduced his dosage.  She also predicts that he will more than likely not need to be on thyroid medication after the age of 3.  It's critical to get the thyroid under control in the first 3 years of a child's life based on how the brain develops, so we are very thankful that from birth a child's thyroid levels are tested.  We give the medication to him at his dinner feeding by crushing up the pill and adding it to his solids...ain't no big deal.  ;)

A friend of ours asked us how we feel about going to the appointments.  I expressed that I do remember feeling a little overwhelmed at the beginning because there were so many.  I remember thinking, I should be going to play dates, not doctor appointments.  I was a little over ambitious with scheduling appointments though...because I just wanted the knowledge of what to expect and know how to best care for my little guy.  Then I decided, if I am going to spend an hour or so at a doctor's appointment, I am going to make this a fun event and stop to get coffee afterwards...or lunch...or a shopping/browsing excursion!  If life gives you lemons, make lemonade.  

I started teaching my class at the U this month and the anticipation of it gave me butterflies like I was toeing the line of a marathon...same excitement and nervousness.  I knew once I got there I would be fine.  The class is called Teaching Physical Education in the Elementary School.  Right up my alley!  I have 32 students and the first class flew by!  I love the college age as it's such a monumental time in their lives and I am thankful to be a part of such an exciting phase of life for them.  I am anticipating a fun semester filled with professional growth for me and a chance to see what the latest trends in being 'cool' are these days.

I want to see you be BRAVE!

God's timing is always perfect.  This past week I was thinking of K's mom and felt led to text her and share what was on my heart.  I babysat K and her sisters in college and have written about their encouragement to me in numerous posts.   Here is what I text her...

Me: Good morning!  (Insert pic of Jack) I just wanted to tell you that I am thankful for your Godly example of a hard working mom!  I think of you often and I am encouraged by you!   

K's mom: Too cute!  K's in the talent show tonight at the HS, signing the song BRAVE (by Sara Bereilles)...she's also up for senior winter fest royalty!  Coronation tomorrow :) life is good.

My wheels got turning on how I could make it work to get to the talent show that night.  I was able to help with bedtime with the boys and hurry over  before her act.  I hadn't been in a high school in a long time and it was very entertaining to see the acts that were preforming...from solo rappers, to boy bands.  As K's name was announced along with her two closest peers (which happen to be the volleyball stud and the lead actress in the fall drama performance) the crowd hooted and hollered.  

The curtains parted and there on the platform was K in a sequin dress, sequin leggings, and sequin shoes!  She rocked that outfit.  Behind her were these beautiful friends signing along with K.  She whipped her hair around and had the dance moves that lit up the auditorium.  She was like Beyonce in Destiny's Child...all eyes were on her.  The final part of the song was moving...as she signed the words...I just want to see you be brave...I just want to see YOU be brave...K pointed to the audience and dared us to be brave.  At the final chord, the crowd was on their feet.  She nailed it!  I was a mess.  Tears streaming down my face.  Along with a stellar performance witnessed by all...she won the talent show!

As the lyrics read...say what you want to say...K signed that message to the whole student body the following day at the HS's winter pep fest.  She showed me what brave is...and I felt like when she was pointing to the audience she was challenging me to be brave!  She said so much through this song... and has through her amazing life...

The time had come for the announcement of the crowning of the queen...and when her name was announced that she indeed was voted by her classmates as the queen of winter fest..with double arm pumps and a "yes" she accepted her crown. :)

Watching this community be impacted by her amazing personality, her love for life, and her ability to inspire us to be brave...gives me so much excitement for Jack's life.

Congrats Queen K...I hope you wore your crown to bed tonight.  

Take me deeper than my feet could ever wander...

I can remember right after Jack was born that I couldn't go an hour without asking God to give me strength.  I often go back and read the blog entries where I shared these fears of what I thought life would look like and the deep emotions I was having.  Why is it that when things are tough, I am on my knees until I am able to get up again...only to humbling ask Him to forgive me for taking back the reins.  There have been times I have had a desire to go back to those days and be fully reliant on Him, like I was in the first few weeks.

So I start off this 2014 year with the goal of not waiting until those events present themselves, to bring me back to my knees, but to daily TRUST and put FAITH into asking God for His guidance.  Charles F. Stanley writes in the Life Principle Bible that adversity reveals our level of faith.  Fear always accompanies adversity; in fact, a degree of fear is what makes something an adversity instead of just another experience.  Wow, how getting a diagnosis at birth was adversity for us, the fear of the future, the fear of the unknowns...a different plan than we expected...but now...Down syndrome is just a small part of who our sweet Jack is...and hard to define as adversity.  Fear causes us to project the very worst that can happen-that we will never recover, that all hope is lost, that we will never again enjoy some treasured thing.  Many of my first initial thoughts when hearing the words, Down syndrome.

And then there is faith...

Again, music expresses what my heart yearns for.  Oceans (Where feet may fail) by Hillsong United (please click the link and listen to how this song will move you) orchestrates an amazing picture of Peter leaving the boat when Jesus called him to TRUST and walk towards Him on the water.  The disciples had been out at sea when a storm hit and Jesus came to them walking on the water.  They didn't believe that it was Jesus, more a ghost, so Peter asks Jesus to command him to walk towards Him, on the water.  As Peter begins to walk towards Jesus, he starts to doubt the call that God commanded of him, and starts to sink.  He was focusing on the wind and the waves and not focusing on Jesus.   

Spirit lead me when my trust is without borders.  Let me walk upon the waters.  Wherever you would call me.  Take me deeper than my feet could ever wander.  

I can say that I would have never asked God to give me a child with Down syndrome when I was pregnant with Jack.  My faith was in God but it was in what I wanted and envisioned for my life.  My faith...was in Christ but also in myself...and now that faith, that I cling to...has taken me deeper than my feet could have ever wandered...

You've never failed me and You won't start now.

Luke 11:28 states that obedience always brings blessing.  In the past 10 months, I have felt the many blessings of walking on the water, trusting Him.  It has been one of the best years of my life and I know it's because I have relied fully on my faith in Christ.  The waves may crash and the oceans rise, but the times I have trusted God and been obedient to His calling for our lives...the fears have subsided.

My prayers have changed...take me deeper than my feet could ever wander...may my faith be made stronger.

9 months...little guy, big potential.

On Christmas day Jack turned 9 months old!  We had an awesome holiday celebrating with both of our families.  We are so blessed with amazing siblings and parents!  We were also able to spend the month celebrating the birth of Jesus with caroling at the local nursing home (eek...5 moms and 10 kids under the age of 4...quite the adventure), Macy's 8th floor display, two women's Christmas events, my annual favorite things with the home girls, precious moments reading books to Luke and Jack about the birth of Jesus, putting up the tree, sharing gifts with each other, a wonderful candlelight Christmas Eve service, and the boys' Christmas program at their daycare/preschool.

 

Here is a short video of my energetic cow and adorable little lamb at their Christmas program:  Luke and Jack's Christmas Program

 

Jack's thyroid test results came back lower than the first initial test but still higher than normal.  This time it was 5.7 and 4 is the normal range.  We go to meet with an Endocrinologist on January 9th to get more information on the thyroid and what the future will look like with this medication.  

I absolutely love going to physical therapy!  We go once a week and our PT works Jack pretty hard and he is doing amazingly!  It is such a blessing to have such a wonderful place to go that has high expectations and we all enjoy going!  Luke asks to go to the PT's house because he has so much fun and she has the BEST toys...sorry Luke...it's not her house (it is her business)...but it does feels like home to us! :)  He is still working on that six pack so many exercises are spent on his core muscles.  He has been working on transferring his weight to the opposite side to grab things and has also gotten into the crawling position!  What a champ!  I always leave there with such excitement on the progress he is making.

We started treadmill training this week.  I posted about this in June, as Chris had talked with Dr. Ulrich, who has conducted numerous studies and published many journal articles on kids with Ds, as treadmill training improves developmental outcomes with walking.  Jack owned the treadmill like a boss.  :)

 

Little guy, big potential.  

So I wanted to share some of the videos that really encouraged me.  In the early days I used to stay up way too late and try to find videos, information, and pictures of what Jack's life would be like.  Again, I reflect on those days realizing that fear drove a lot of my thoughts and feelings about Jack having Down syndrome.  Will he be able to talk, walk, read, have friends, get a job, live with us forever, and on and on.  I had made assumptions of what persons with Ds could and could not do...boy was I wrong!   I do know that just because someone has an extra special chromosome doesn't mean that my Jack is going to be like them...just like we can't generalize ANYONE!  When we do, we miss out on some amazing individuals because of our own ignorance.  Check out some of my favorite people and how their lives encourage me!

Meet Teddy Kremer. I watch this video at least once a week.  He is a baseball fanatic and is the batboy for the Cincinnati Reds.  Teddy your love and excitement for life makes me smile! :)

Meet Tim Harris.  He's owns his own restaurant...and I would love a hug from this guy! I received this video two days after Jack was born.  I remember watching it in the hospital.  How many of us dance ourselves into our job everyday...can you say JOY????

Meet Rion Holcombe.  His mom captured him getting his acceptance letter to college.  I love the moment when he realizes it and looks up at his mom...gets me every time!  College...breaking stereotypes left and right!  Way to go Rion!  

Meet Jack Carroll.  Little guy, big potential.  YOU have been one of the BEST GIFTS I HAVE EVER GOTTEN and over 24,000 times people have read about you changing the world.  I am in awe of God's goodness and I am so thankful to get a front seat.  You have big potential, HUGE! I love you buddy and honored to be your mama!

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.