Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Saturday, February 16, 2013

Worry ends where faith begins

I used to get cold sores all the time.  The slightest amount of stress can effect my body almost instantly.  Now, in no way am I suggesting that my previous life and job were so incredibly important that I was stressed out all the time.  I merely believe I was burning the candle on both ends (and possibly the middle too).  Between family, work, teaching classes and taking classes, I was busy. 

Since staying at home, I have only had 1 cold sore.  In a year and a half.  I am still busy, just in a different way.  It is so nice to have the option to "let something go" for the day (i.e. cleaning, laundry, etc.) in lieu of spending real time with my kids.  My "boss" doesn't mind at all and I rarely feel too guilty about it.

Today feels like one of those days. Two children are on my heart and mind today.

During middle of the night feeding, I read a story about a family with a 2 year old daughter named Sophia.  She has been battling leukemia and they made the heartbreaking decision to put her on life support in final efforts to save her life.  Sophia also has Down syndrome.  The link between the two is not coincidental.

The association of Down's syndrome and leukemia has been documented for over 50 years. Multiple studies have established the incidence of leukemia in Down's syndrome patients to be 10- to 20-fold higher than that in the general population. The age of onset for leukemia in these children is bimodal, peaking first in the newborn period and again at 3-6 years. This increased risk extends into adulthood.  From ~ http://www.ncbi.nlm.nih.gov/pubmed/2955886

This is one of the yuck sides of DS.  An additional worry in life.  O's first round of bloodwork was just fine, but who knows what the future holds?  For any of us for that matter.

To follow her family's story, please visit this page ~ https://www.facebook.com/BabySophiaJoy

The other kiddo is one that no longer walks in this life with us.  Eli was a classmate of my daughter's.  He was diagnosed with neuroblastoma at 3 1/2 and fought his battle with cancer a until he went to begin his life with Jesus last year.  He was 7 years old.  A first grader.  Yesterday would have been his 9th birthday.  His family's journey is also one that inspires me daily. It puts so much into perspective.  Although they journeyed through some of the most awful things with Eli, their faith and love in Him saw them through. Eli had a clear purpose here on earth and so many were impacted by his all too short life here.

Kate talks about Eli and his smile and laughter.  It was a hard time last year when he wasn't able to return to school and have to talk about things with your child that you would never hope to.  But the faith children have is admirable. After he passed, I knew those at school and we at home had done our job.  Kate's response "Now he gets to live with Jesus!"  Yes, bug, he does. Forever. 

Below I have linked his Eli's Army pages and the video from his Celebration of Life.

http://www.elihorn.com/blog/ or  https://www.facebook.com/elisarmy

Celebration of Life Video ~Eli

Why include these today? 


No matter how long my days might seem, there is someone that wishes the day would never end as it might be their final moments with someone they love.

We never will know what path is laid out before us.  I must trust and have faith that all will be as it was intended to be.  The highs will be high and the lows may be low; but they will be nonetheless.

1 comment:

  1. What a wonderful post Jenny! :) Let's get together again soon!


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