Friday, August 23, 2013

5 months...Jack in NYC...Hi 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 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 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.  

Monday, August 5, 2013

What story do you want to tell?

God comforts us in all our troubles so that we can comfort others.  When they are troubled, we will be able to give them the same comfort God has given us.  
2 Corinthians 1:4

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

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

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

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

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

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

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

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

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

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

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About Me

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The name of this blog was inspired by Kristin Armstrong's devotional book, Strength for the Climb. I am a midwest girl married to a handsome, hardworking, God-fearing man and the mother of two boys. My eldest son, a social butterfly that has enough energy and excitement to make anyone tired and a personality that will make you giggle with laughter. My youngest son, can cuddle like no other, and his eyes will speak right to your soul. Both of my sons have taught me more about God's grace and goodness. We are blessed to have an extra chromosome in our family as our sweet Jack was diagnosed at birth with Down syndrome. With that, I am reminded daily to trust and rely on God's perfect plan on this journey called life. I am a child of God and grateful to my Heavenly Father for His continued blessings, guidance, wisdom, and most importantly for saving my soul.