Brunch with Santa 2018

Santa came at the invitation of Wisconsin Upside Down to have Brunch with me and my family!

I sat- I should say snuggled and relaxed on his lap- but couldn’t think of one thing I wanted him to bring me. 

I have all I need and I’m very blessed.

Mostly I’m blessed to be loved by so many.

May you and yours have a very Merry Christmas.

The Adoration of the Christ Child

This oil on wood painting shows a classic nativity scene, and the little angels kneeling at the front on the left clearly has Down's syndrome. Some think the shepherd at the back on the left also has an additional chromosome.

At the time when the work was created it was common for the faces of those who had commissioned the art to feature within it. Perhaps we are looking at the face of the much-loved daughter of a wealthy and proud 16th Century Flemish family here. 

The 1515 Flemish painting, by an unknown artist, depicts an angel (next to Mary) and possibly the shepherd in the centre of the background, with Down's syndrome.

It's wonderful, and it shows that Trisomy 21 has been around for a very long time. The Flemish artist is unknown, but was a follower of Jan Joest of Kalker. The painting resides at the New York Metropolitan Museum of Art. 

http://www.downssideup.com/2012/12/a-christmas-angel-with-down-syndrome.html?m=1

The Most Wonderful Time of the Year

Things are going well for me and I pray the same is true for you.

I started first grade with a teacher who is willing to challenge me and treat me like she treats all the other kiddos. I’m reading well and am working almost everyday on math facts. Those minus take-away problems are the trickiest. 

In October we celebrated Down syndrome awareness month. My friends and family helped me to raise nearly $2000 for our local Wisconsin Upside Down organization. We walked a mile and felt the love of so many supporters.

In November we celebrated my 7th birthday and then two days later- the three year anniversary of my last day of chemotherapy. My doctor visit was my last active visit with my oncologist and I brought old pictures to share with him. What a journey- so blessed to have made it to the other side! 

Thanksgiving was a good time- a time to be thankful for prayers that have been answered. Mom used to pray that I would learn to talk and to be understood. Now, I talk all the time and although I’m in speech therapy, I’m able to get my wants and needs and fabulous ideas across to everyone I meet. Dad prayed that I’d beat cancer and so did so many others. I was able to do that too, not alone of course, but I beat it and hope never to revisit that again. My family now prays that I’m able to keep up with my school work. This is a crucial time for kiddos like me and I hope too that I can stay at my school for a good long while. We are thankful for friends, family, the opportunity to pray and for love. Oh! And Massimo! I am so thankful for Massimo- my dog. He makes my every day better. 

Have a great Christmas season. Thank you for reading.

 

Three years ago I had 100 days left

Three years ago today I had 100 days left  of chemotherapy protocol to complete. 

Chemotherapeutic treatment for people with leukemia  can last between 2.5 and 3.5 years. I got out early on good behavior and only had treatment from August 2013 to November 2015- ages 21 months to two days after my fourth birthday- a little less than 2.5 years. I don’t remember much.

What I do remember is what I did last week and what I did this summer and all I have to look forward to. I know I’m one of the lucky ones. That I made it through the treatment generally unscathed and with little memory of the hard parts of having cancer.

I still hate all medical gloves (even the ones at the dentist) and don’t like having my blood drawn- but- even some heathy people don’t like those things.

I may have some longer term side effects and I’ll learn more about those at my next and last visit with my oncologist next month- things like memory loss and bone fragility. But really, overall- I know I’m pretty lucky. There are families out there- unlike mine who have a hero in heaven now because of cancer. It’s important to remember them. This journey has taught me to appreciate life. 

Mostly, I remember the good things about my cancer journey - the friendships we made while being part of the HOT unit, the way the community supported us and prayed for us, and the snuggles and special family time that was mandated by my weakened immune system- that really gave us time to truly learn to love one another- no matter what trials we faced, no matter how many chromosomes we had.

There’s a really cool T-shirt my mom has that says, “Love doesn’t count chromosomes.”  It’s true.

What my family has really come to understand since I came into being, I think, is that “All life is precious.”  Mom has a T-shirt that says that too. It’s a lesson I plan on continuing to teach- to help people learn that we are all God’s children- all precious- all valuable- and all capable of leaving a positive impact on this world- all precious.

So, here’s what I’m doing these days with my precious life. Just typical fun summer stuff before I start first grade in the fall. 

How has your summer been? I wish only the best for you and yours. I’m still counting my blessings.

So far this summer—-

I’ve been swimming:

Spending time with Otis, a therapy horse and SMILES 

volunteers:

Mini golfing:


Catching and playing with toads:


 Visiting Texas: 


Spending time with my GranMary and Grandpa Cliff:





Sailing:


Participating in Game On day to help other kids through their cancer journeys:



Swinging:



Spending time with my sibs: 

Here’s a pic from 3 years ago- 100 days left in 2015:

Spending time with my friend Nicole:



Cooking:


Spending time with my sis and her friend and my Nannu and Nanna at the church festival:

Gardening:

Visiting Mr. Amon’s Rose garden:



And playing with Massimo, my favorite dog in the whole world. Mom promised we could get a dog once cancer was through and it’s been long gone for 3 years now. I love my Massimo.

Unbelievable

It’s unbelievable - how far she’s come.

Today Katherine was so incredibly busy with her “normal” life- that when her oncologist basically “broke up with us” it came to me as a real blow and I almost started crying! What do you mean - next visit will be our last visit? and she’ll be transferred to the “Next Steps Clinic.” What if she’s not ready for the next steps? Then I looked at all she did today and I realized- I may not be ready for the next steps- but she is. I can’t believe all of the the things she did today- without so much as a thought about cancer- or even Down syndrome. This kid is going places- and I know it because I had to driver her ... 

Best Day Ever

First ever Piano lesson (Thanks Mrs Penniman for taking a chance on Katherine,) Oncology Visit and book delivery for other cancer kids (thank you donors), zoo trip, Yerkes visit to pick up sister, and first SMILES horsey ride of the season (thank you to all those who donate locally and regularly to this organization- your gift makes lives better.)

Now- it’s time for second dinner and bed.