Dear Tessa: Summer

Dear Tessa:

I am a day out for June’s letter.  That just means that you get two letters this month!  My brain is crowded with memories from our trip up north a few weeks ago, conversations with your specialists and busy weekends.  Summer is providing us with plenty to keep our schedules extra full.  And I love it.  Because I know that we could be in the hospital and thankfully we’re not.

Summer looks a lot like this:




Little swimsuit tan lines, the smell of sunscreen, and late nights by a campfire are all what is making our summer extra enjoyable.

We went up north in June with all of Daddy’s family.  One of the best moments of the trip was when we visited the wild life park.


We were swarmed by parakeets and followed by hungry goats.  You and a goat shared a biscuit.  You laughed at the deer and the peacocks that roamed the park.


The trip gave you a break from appointments.  For the first time in a long time, you were free of frustration.  And if your MDS was bothering you, I certainly didn’t know it.  I watched in awe as you played alongside your cousins.  This trip was an outlet for your curiosity. You turned into such a big girl in that week.

No more straw sippy cups, using a fork while you eat, walking with push toys all over the place, climbing your jungle gym, etc.  What’s next?!!

Tessa-up north

While answers remain unknown for a treatment option for you, I am not losing hope…gaining frustration, but certainly not losing hope.  People always say, “…can’t she catch a break,” or “…what next…”  and I see the frustration in them that wants so much for you to be healthy.  I wish you knew how many people want to help.  I wish you knew how your story touches them.  I hope you feel the love around you because it is amazing.  Your strength is inspiring.  Even though my heart hurts wondering if we will ever come across a treatment, I will never feed the fear.

You are one in a million.  You are my hero.

Love, Mom

MDS Awareness Ribbon

Moving Fast!

Dan and I arrived back home from our vacation to swoop Tessa up and cuddle her all day!  While we were gone, she managed to cut three or four teeth in three days while we were gone.  I talked last post about Tessa meeting her milestones and while I enjoy being a part of them even when they can be wonderful and frustrating (example: teething), I feel like we dodged a little bit of a “parenting” bullet here.

BUT…she was still pretty happy to see mom and dad…

Her motor development as well as physical strength are sharpening as she gets close to her first birthday.  Here are some things that have been happening since our last post.

  • She got more teeth
  • She is learning cause and effect
  • Tessa is picking up large items from her high chair tray
  • She is still scooting backwards, but at greater distances
  • She is working hard trying to transition from laying to sitting and vice versa
  • Her aunt and uncle taught her how to stand at the couch
  • Tessa is drinking from a straw with ease and holding her own sippy
  • “Mom” and “Dad” are being said more frequently, especially when Dad is visible
Cause and effect
“When I hit this, it lights up!”
Picking up a banana
















I was reading on that I need to put things on Tessa’s tray that are easier for her to pick up and still safe for her to eat.  She has yet to develop her “pincher grasp” so large, soft items are working best!  Thanks! 

Almost on the go!

While we were gone, her aunt and uncle taught her this little trick!  Her shoulder strength has greatly improved, and she is able to hold herself up for a little while!

Working hard to get to the sitting position

Blurry, yes, but you can see that Tessa is trying so hard to get into new positions without just falling over.


She is drinking from her sippy pretty much on her own.  She needs a sippy with a straw to help maintain tongue control and to strengthen her oral development.  It took no time at all for her to start doing this!

And after all of that…

A girl is tired!


  • Please keep your eyes peeled for the launch of our Kickstarter video to help raise funds for the children’s book I am writing.  There, you can pledge any amount of money and receive great incentives!  I’ve been informed by our publisher that the illustrator is currently working on our project!  You can look here for details or you can look at after the launch of the video!  More details will follow as I get them!

Thank you!