GOLD

Jack turned 14 months at the end of May and we are very thankful he stayed pretty healthy all month!  Just one fever that filled me with the fear that it was RSV and was hoping it wasn’t anything like his days at the beginning of April.  He also welcomed a molar!  Yowsa!  His seventh tooth was a molar!  I was doing some routine facial and mouth exercises with Jack (who would have guessed you needed to strength the tongue muscle for help with speaking and clearing food and also rev up those facial muscles to smile and help with closure of the mouth ) when I put my finger in to massage his gums and there it was!  Boy, does that kid have a good bite!

His one year check up was a little late based on his after birthday party shenanigans that landed us in Children’s.  His pediatrician has always been impressed with Jack and has treated him like any other patient he has.  He went through all the general questions and it was so exciting to hear him wrap up the visit expressing how well he thinks he is doing.

Jack is babbling like crazy and it just happens to be when he is suppose to be getting ready for bed.  He loves grabbing people’s faces and squeezing.  He says Dada much more than Mama ;), but what surprised me most was when he brought his hand to his chin and signed the word, Mama.  He can feed himself crackers and recently picked up cheerios and peas and put them in his mouth.  Some made it in, some Bella enjoyed.  His favorite food is avocado and he would eat a whole one if we let him.  From the looks of his belly, he might need to get on his dad’s training schedule soon. 🙂

He can push himself up on all fours, and before he got sick was ready to surge forward.  It took a lot of effort to get his strength back and just now is starting to sway side to side and I am hopeful he will be motivated to move forward.  We go to PT twice a week and OT comes to our house once a week.  Speech is twice a month.  Again, we feel extremely blessed to have such great therapists, to have the resources available to us, and a happy boy.  So far, he enjoys therapy but when he’s tired or hungry he shows his toddler attitude.

Today, he had an Auditory Brainstem Response hearing test.  The results were inconclusive at the follow up test for the tubes he got in March.  He kept looking at the lady in the booth instead of the dancing tiger in the corner.   I think he liked charming the audiologist more than the toys.  🙂  Here are a few pictures from today’s appointment and I had to make sure that he didn’t rip the stylish headband off during the test.  Gillette has the new equipment for the ABR so he didn’t need to be sedated.  Trying to get a 14 month old to sit and play for 45 minutes while wearing a bunch of cords on his head is quite the job.  I had to work on my hand and eye coordination.  Yikes.  But he PASSED!  Nice job buddy. 

We are very excited for the upcoming weekend and the 5K that support Gigi’s playhouse.  You can read more about the event here and we are praying for good weather.  Jack’s fans have helped us raise over $2,000 for Gigi’s and we are beyond thankful for all the love and support!  Gigi’s provides free programs to all families and I am thankful for the community it has provided our family in the early days after Jack was born.   Recently, I have been in contact with them about being on the outreach committee, specifically the medical community.  I have been in conversations with them about Jack’s baskets and I am excited to see how we can bridge the gap between medical professionals and families’ experiences.

If you are free this Saturday, we would love to have you come out and celebrate with us!  Click “Join our Team” and choose Jogging for Jack.  You will need to create a username and password but after that it’s pretty easy.

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

GOLD

As many of you know, I am a physical education teacher and spring is always crazy with field days and end of the year events.  I had the unique opportunity to teach an all girl’s class this year and I absolutely loved it.  In December I was out on a run and heard the song, Gold, by Britt Nicole.  It has been one of my favorite songs and always puts a hop in my step.

This song is such an encouragement to those that hear it.  It shares the message that whatever you have been told, YOU are worth more than GOLD.  Don’t let anyone tell you that your not loved.  Don’t let anyone tell you that your not enough.  Wow, a song that uplifts individuals!  Is that even possible in today’s society?  I kept thinking of my girls and the issues they face everyday.  The voices in their own head, words that have cut deep, the belief that they have to measure up, the pressures of fitting in.  I asked them what they thought this song meant.  I emphasized that their worth does not come in what others think of them.

I wanted my girls to hear this song, to believe it, to live it.  A friend and I choreographed the dance that they could follow and I could incorporate it into the rhythms unit.  I then challenged them to share it at the end of the year assembly.  As the weeks approached we practiced this dance every class period.  I would see how the girls would express themselves in the dance moves and I then started to hear the words being sung.  I could see the belief in themselves was evolving.  We spray painted black shirts with gold spray pant and wore funky headbands.  As the day approached, they were beaming with excitement.

This past Friday they had the audience cheering at the final chord and many adults in tears.  To see this group of girls, each with a unique story, shared the message with our school community that each boy and girl is worth more than GOLD…it was beautiful. (check out their performance on the video below)

As I reflect on what each girl brought to this song and I hear this song being played in my own head, I remind myself that MY worth is more than gold.  My worth does not come in what others think of me.  Either does YOURS.

Honestly, when I think of the hard days in the past 14 months of Jack’s life, it hasn’t been because he has Down syndrome, it’s when I think of how others view Jack’s life.  I have felt like I have had to defend his life.  I felt the pressure to have to explain to others that his life is worth living (being that many parents terminate babies that are created like Jack).  When I refer to ‘others’, I mean people I don’t even know, not the amazing family and friends we have.  Others.  Who are these others?  Why was I letting others steal the amazing joy I have experienced with their own ignorance?  My son’s worth does not come in what others view his life to be.  My son’s worth does not come in what he can and can not do.  He is worth more than GOLD.  My worth as a mother does not come in what I do and do not do. My worth is more than GOLD.

Wow, looks like this song made an impact on more than these girls.