Jogging for Jack 2014

As many of you know, we are big supporters of GiGi's Playhouse.

(Meeting Drew's family for the first time in person at Gigi's Playhouse.  We LOVE them and so grateful for their friendship!)

We are participating in their annual 5K event on June 7th, and I'm inviting you to become a member of our team! Jogging for Jack!  Last year we found out about the 5k two weeks before the event...and had a BLAST!  We would LOVE for you to join us this year!!

Whether you're planning to run, walk, or just enjoy the day: you can help us start raising funds for a very important cause.

The race is at Burnes Park and the address is:

                                                                    Burnes Park
                                         301 2nd Street N.

Hopkins, MN 55343

Just click the link below!  You can read about all the great programs at GiGi's Playhouse. When you're ready, please click the Join this Team button to sign-up. If you can't attend the event, please consider supporting our team with a donation on our page.

Team Name: Jogging for Jack

The homepage for Jogging for Jack is:

http://gigisplayhouse.donorpages.com/Race2014TwinCities5K/JoggingforJack

On behalf of the thousands of children and families served by GiGi's Playhouse: thank you so much for your support.

Also, we are making shirts for Jack's team and if you are interested in buying one you can email joggingforjack@gmail.com.  They are American Apparel shirts tri-blend track shirts (click on the sizes to see the website).  

Sizes available:
baby onesies: 3m-24m
infant: 3m-24m 
kids: 2 year, 4 year, 6 year
youth: 8 year, 10 year, 12 year
adult: small-2XL

They are $15 and the money can be sent to our home address.  Here is the logo that will be on the shirts:

We love you all and hope we can see you all there!  

Chris, Carissa, Luke, and Jack

                                               

PS...Guess who's getting geared up to cross the finish line first again?

COME JOIN US THIS YEAR!!

Oxygen

So I was hoping to post pictures of Luke & Jack's birthday parties but it looks like Jack partied too hard and we landed a recovery vacation at Children's hospital.

On Sunday evening, Jack woke up with an extremely high temperature.  We gave him some tylenol and this was the last night he slept in his crib.  He was starting to cough and every time he would, he would vomit.  On Monday he seemed to be very lethargic and tired.  He wouldn't really sleep unless I was holding him.  Later that afternoon I took him to the doctor and they tested him for the flu which came back negative.  He threw up again and his temp continually was around 103 throughout the day, peaking at 104.  His doctor was not working that day and the doctor we saw said he had an ear infection and potentially RSV.  She sent us home with a plan that included two neb treatments, twice a day, and an antibiotic.

On Tuesday, he seemed to be doing better until about 4:30 and then significantly declined.  His doctor asked that we go down to the ER to check his oxygen levels and if he was having signs of dehydration.  The Xray showed that he had pneumonia.  The doctor also came back saying he tested positive for RSV also.  That would explain why his temps were consistently high.  It is said that RSV runs it's course and it can be up to a week before the temperature comes down.  This has made him completely uncomfortable and he has refused to sleep unless we are holding him.

They released him from the ER because his oxygen levels were 97 which was an excellent number (100 is perfect).  We were told to follow up each day with our doctor which I did on Wednesday.  At that appointment he was at 95 and we went over his symptoms.  He ordered a test of his oxygen on Thursday morning and follow up x-ray.

Each evening was very long, slept in a chair or with him laying on my chest, elevated in bed.  We all are so tired.  We rolled out of bed and headed to the doctor where his oxygen levels were anywhere from low 90s down to 79.  He said that if we don't give him a neb treatment he would be sent via ambulance to the ER.  So off Jack and I went to downtown St. Paul, to Children's hospital.

In the ER the readings were very similar and they admitted him immediately.  His temp soared to 105 and it took the nurses 8 pokes before finding an vein that would work for his IV. That was not a highlight for Jack's mama.  Ugh.

Our hospital stay has been pretty good, a few frustrations, but most importantly our focus is on Jack's improvement.  He works much harder at what most of us take for granted...example: coughing.  When we have a cold, it's very easy for us to cough up mucus and clear our airway and it takes everything in Jack to clear all the 'junk' out which is effecting his ability to inhale oxygen.  His lungs are working diligently and with also having pneumonia along with RSV, this kid is a fighter.

He has decreased his dependence on oxygen support, occasionally going to room air (which is what we breathe at...which is 21%) and then sometimes needs to go back up to 25 or 30%.  I have realized I can't control when or what the next few days look like, which reminds me that all I need to do is pray for his strength and health and give him a little extra love!

I am very grateful to Chris' parents for taking care of Luke.  We have alternated going home for a few hours to spend some one on one time with him.  I can't tell you how much I love Luke and his  personality.  He is hilarious.  He lifted his binoculars and told me yesterday we were going on an adventure.  I cried when I had to leave and go back to the hospital.  I can't wait for us all to be home.

Jack has the hardest time at night.  They were waking him up to give him neb treatments that had a medicine in it that makes the him cough...which is not fun to any person that has been sleeping for a few hours.  He then is so irritated, he tries to rip out his oxygen, and has taken hours to get back to sleep.  I had a meltdown last night and just cried while I tried to calm him down.  The nurses we have had have been awesome and last night I would declare as an angel.  She rocked Jack to sleep and we got 7 hours of sleep!

What do our days look like in the hospital?  Well, Jack's radius is about a two foot cord, so he hasn't seen much of the hospital. ;)  The rooms are so nice, they just remodeled last winter and it really kind of feels like we are in a hotel.  Jack sits on his bed and plays with toys and we sing songs, play patty cake, and read books.  His appetite came back a little bit today and he was eating his favorite food, avocados!  It was such a beautiful day today and I had the pleasure of sharing a devotional at a soon-to-be mama of a precious girl, who also happens to have an extra special chromosome.  Jack can not wait to meet this baby girl.

Along with getting out today, I went for a run.  Children's is near one of the steepest hills in the cities, Grand Ave hill.  (Katie-it's nothing like what we did at the Nike Women's Marathon though ;))  I knew I was up for a challenge and since running is my free therapy, I thought, what the heck?  I'm lacking in sleep and exhausted but no hill's going to stop me!

As my lungs were burning after conquering that hill, all I could think about is the fact that my sweet precious boy was working that hard simply just to breathe.  How many times do I take for granted the simple tasks that many others work so hard to do?  

Delivering Jack's baskets to the hospital...1 year later

I didn't realize how excited I would be going back to the hospital one year after Jack's birth.  While we were driving today I realized that it was the exact same time and day of the week.  A Monday afternoon around 3 o'clock.  We even took the same route to get there...but instead of my uterus contracting...I felt like my heart was. :)

Creating Jack's baskets has been such a delight.  Thinking of what to put in the basket, hearing from friends and family that would like to contribute, getting packages at the front door filled with blankets made by friends with love, picking out an adorable outfit that will bring a smile to the family's faces when their precious baby is in it, and simply watching how God put the words to the letter on paper.  How do you put in to words what your child has taught you in this year?  Remembering the early feelings that were experienced, the grief, the fears...and then the joy.  The moments I did not expect, the fears that haven't come to fruition, the amazing ways people show their love, the silent moments when God gives you peace.  How do you fit that into half of an 8.5 X 11 piece of cardstock?

And then it came...

Dear parents, 

Hello, my name is Carissa and I would love to be one of the first people to congratulate you on your newest addition to your family.  Congratulations!  I also want you to know I have also experienced receiving unexpected news.  My husband and I welcomed our son, Jack, and were told at birth that he was born with an extra chromosome and has Down syndrome.  There were moments of confusion, grief of what we thought our lives would be like, and fear.  Please know that you are not alone in your feelings.  

Although this basket and words of encouragement might be hard to read at this moment, I hope that you find comfort in hearing from our family and friend that is also raising a child with Down syndrome.  I encourage you not to read (at this point) the outdated material that will give you generalized statistics and  concerns that are associated with Down syndrome.  I found comfort in hearing from actual families that are loving and living their lives with children with Down syndrome.  

So with that, I want to tell you a little about what Jack's life has already taught us...

He looks like his older brother, Luke.  He has his nose, his ears, and his amazing hair.  He is more similar to him than different.  He is rolling, sitting, playing, babbling, laughing, learning and exploring.  He has my husband's strong willed determination to accomplish tasks that many of us take for granted.  He can cuddle like no other and his eyes speak right to your soul.  His smile will make anyone's day turn around and his extra special chromosome has made relationships stronger and mended others.  His life has been a blessing to us and inspired others.  The unexpected news of him having Down syndrome was not a surprise to God, and it has been a year of trusting that He has a perfect plan for our family.  

Although there were many tears at the beginning, I would not change one thing about Jack.  He has been such a gift to our family.  He was fearfully and wonderfully made by God, just like your precious baby.  

My prayer for you is that you take the time to grieve the baby you thought, and love the baby you were given.  Your precious baby will steal your heart, will stitch it up with a much stronger, more beautiful thread that will be a much better masterpiece than you could have ever imagined yourself.  

Most of my hard days are when I allow myself to look too far down this journey and I am quickly reminded when I gaze upon his beautiful eyes that he just needs my love today.  God will sustain you and give you the strength and guidance you need to be the best parents for your child.  Trust Him and you will experience the unexpected...JOY!  

Blessings to you and your family.  Enjoy this basket, filled with love and support for you from our sweet Jack and those that love him.  

Love, 

Jack's family

“For you created my inmost being; you knit me together in my mother’s womb. I  praise you because I am fearfully and wonderfully made; your works are wonderful, I  know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.“ Psalm 139:13-15

Letter to parents from us and Drew's family

Can you tell I am squeezing this nurse?  It's because of her we were able to make this happen.  I shared with her that because she was gracious to answer my questions, listen to me, have conversations and make arrangements, we are able to have Jack's baskets be a part of this hospital and make an impact on another family's experience.  She is also the person that got the ball rolling to have me come to speak to the staff.  I shared with her that because of her work and dedication, many families' lives will be changed!  

The angel in the nail salon.  Read about it here.  God, you are so good and you orchestrated this meeting.  Thank you Diane for loving my kids like your own.  Thank you for who you are in our story.  For congratulating us on our beautiful baby and for showing us God is ALWAYS with us.  Nail salon or hospital.  

Last night, Chris and I got a chance to pray over the baskets.  It was a chance for us to ask God to bless the families that will receive these.  He knows their circumstances, He knows their baby, and He knows their upcoming journey.  

It is my prayer and big dream that all children beautifully created with an extra special chromosome in the Twin Cities (and maybe even beyond ;)) could receive a loving welcome from one of Jack's baskets.  Every child should be celebrated and welcomed into the world and it's sad to me that many families are never congratulated and some are even treated differently or avoided because of a Down syndrome diagnosis.  With that, I am excited to share that I will be speaking to the hospital staff on September 8th, giving a family perspective on receiving unexpected news.  There is possibly two other hospitals that are interested in having me come to speak to their staff.  Please pray with me that this could happen.

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 your support!

*****Since the writing of this initial blog post, Jack's Baskets are currently available to all birth centers int the Twin Cities and sent across the United States.  We follow HIPPA privacy laws and have ways to request baskets.  You can find more information on our Facebook page, Jack's Baskets.  Stay tuned for Jack's Basket official webpage!********

My doctor also loved the idea of Jack's basket and welcomed me bringing one to the clinic to give to a family that will receive a diagnosis during pregnancy.  Wow...what if we could impact those families?  The amount of babies that could make it to birth...as the reality is that aprox 90% of babies diagnosed in utero are terminated.  

We are excited to celebrate both Jack (25th) and Luke's (26th) birthdays this week!  We love them both so much and our hearts are filled with joy and love.  

http://vimeo.com/66071538 

That's right Jack, Mama said you would change the world.   

Words. Helpful or Hurtful.

My mama always told me that if I didn't have anything nice to say, don't say it at all.  I will admit that at times in my life, my tongue has been like a sword.  Sharp and hurtful.  

Words.  They carry so much power.  They can encourage and discourage.  They can bring comfort and they can tear apart.  They can spread truth and also lies.  Words, are helpful or hurtful.  

This month has been one of reflection.  One that has brought many tears...of the highs and lows of the past year.  Remembering how the words of Jack's diagnosis were given...to the amazing support we received when we introduced him to the world.  Your comments and encouragement sustained us.  

Being that one of my love languages is words of affirmation, I CAN NOT TELL YOU HOW MUCH YOUR ENCOURAGEMENT MEANS TO US.  Do you know that there were nights that I stayed up late and reread all the comments that you shared with me...believing that we could do this...and do it well!? Sometimes those comments were what helped me get through the first few hours.  God used your comments to help me see that we were well equipped for doing the best we could for our family.  Some of the early emotions included doubt...and YOUR words and presence in our lives have made a huge, huge, huge difference.  Thank you.   

Some people make cutting remarks, but the words of the wise bring healing.  

Proverb 12:18

Thank you for not saying, "I'm sorry."  We are thankful that only two people did...and an overwhelming amount of you said, "Congratulations."  Saying that you are sorry translates to me that you are sorry that Jack is the way that he is.  That you are sad about how my son was fearfully and wonderfully made by God.  God does NOT make mistakes.  Guess what?  I wouldn't change anything about Jack and there is nothing to be sorry about.  

Helpful or Hurtful

Lastly, I want to share something with you that hurt very deeply.  

A few weeks after Jack was born, I became aware that two middle schoolers that I know were making fun of a classmate and her brother, who has Down syndrome.  These two were not just saying hurtful words, but they were also adding damaging body gestures.  This sibling was in tears.  My heart was breaking hearing the details.  These two students were trying to win the attention of their classmates by their immaturity and complete lack of thought for anyone besides themselves.  They learned this behavior somewhere.  They learned that it's okay to call someone a retard and think that it doesn't matter.  That word has always infuriated me.  What also infuriated me was how the incident was initially handled...no punitive consequence for these students until someone spoke up and asked why people with disabilities are constantly being discriminated..as if it's okay.  Why are these hurtful words accepted as common language among kids.  Why is the r-word still being used as if it doesn't hurt.  Just like the n-word hurts so many, especially the African American population.  The word is used so casually and people do not understand the impact that it has.  

It's hurtful...not helpful in conversations.  It brings no value to you or the person you are talking to.  The times I have heard it used is to put someone down and make the person feel inferior to them.  

Please stop saying it.  

If someone says it in conversation, please ask them not to.  If you have children, please teach them why it is so hurtful to my son, to me, my family, my friends with children with Ds, and people with developmental disabilities.  

Tomorrow, March 5th, is the 6th annual campaign to spread awareness to stop the r-word.  Spread the word to end the word.  Please consider making a commitment to end the word.  

Don’t Use Foul Or Abusive Language. Let Everything You Say Be Good And Helpful, So That Your Words Will Be An Encouragement To Those 

Who Hear Them.

Ephesians 4:29 NLT

What if we used our words to encourage others, to instill belief in them, to help them reach their full potential?  

Your words are either helpful or hurtful.  You decide.  

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! 

.  

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!