Saturday, February 22, 2014

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 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 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! 


Saturday, February 1, 2014

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 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 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 me so much excitement for Jack's life.

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

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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.