On friendship and defining a full life

Last night was a pretty sleepless night for me.  Simon was moving around like a crazy babe, which brings me great comfort and actually doesn’t seem to keep me up much. Honestly, I welcome a sleepless night to spend with him in prayer knowing it’s a pretty special time I get to share with my little boy.  My mind, however, was on another family that we have been connected with who was also carrying a daughter with a trisomy diagnosis.  We have made great friends through others who have walked and are walking this path.  We have “met” many friends that we will likely never meet in person, but they are forever friends who know some of the deepest thoughts and secrets of our souls because they have walked in our shoes.  However, when I really thought about what knit us to these new friends - it wasn’t just the loss of our children - but more so the shared bond of Christ.  He is the common thread we share.  Timothy Keller, one of Adam and my favorite authors, describes Christian friendship as “not simply about going to concerts together or enjoying the same sporting event but about deep oneness that develops as two people journey together toward the same destination, helping one another throughout the dangers and challenges along the way…a deep oneness that develops as two people, speaking the truth in love to each other, as they journey together to the same horizon.“  This has proven true time and time again as our family and friends are walking closely with us, bearing our burdens and holding hands with us in the fire (Galatians 6:2, 1 Thessalonians 5:11-15).

My friend, Kari, started her slow labor with her sweet baby, Adelai Rose, over a week and a half ago.  Adelai has 3 copies of the 18th chromosome (trisomy 18).  I couldn’t stop thinking about Kari’s labor last night and was wondering how things were progressing and what it was like to finally lay eyes on their sweet little girl.  Finally, after not being able to sleep at 3:45am, I opened up my email on my phone to see if there had been a CaringBridge update on Adelai.  Her birth announcement was waiting in my email.  As I read it, tears streamed onto my pillow thinking about what Kari’s family was going through – happiness, grief and fulfillment all at the same time.  Adelai was born today, May 8 at 1:35am.  Her parents ushered her into the Kingdom, into Jesus’ arms at 1:35am.  I moved into the bathroom trying to not wake Adam with my tears.  Both of grief and relief.  Adelai’s story had been written, although I am sure her life will continue to fulfill its purpose of love long after her soul is not with us.  Her parents described today as "A Beautiful Day."

Last week, a sorority sister and sister in Christ introduced me to a woman named Chiara Corbella.  Chiara was an Italian woman who carried three babies – two of which only lived 30 minutes.   During the third pregnancy, the baby was healthy, but Chiara was diagnosed with cancer.  She delayed treatments until after the baby was born.  Chiara passed into the next life on June 13, 2012, just a year after her third baby was born healthy.  Her words are compelling.  She said “yes” to all God gave her and was a great example of true joy through hardship.  THIS is exactly how I feel about Simon’s life. While we would love to hear sweet Simon cries ring throughout our house and will certainly long for his sweet body in our arms the rest of our lives, his story is not one of tragedy. His life is perfectly designed by our Creator and will be lived to its fullest whether that be 36 weeks in my womb, 36 minutes breathing or 36 days on earth.  Simon knows nothing but love and will feel nothing but love.  And has been given to us to share Christ’s love with others.  His story is a true love story. 

Here are two of my favorite quotes from Chiara:
“Where is it written that death is terrible and undesired? That having two children who lived only a half hour is a tragedy?” 
“God gave us two special children, but He asked us to accompany them only until birth. He allowed us to hold them, baptize them, and return them to the hands of the Father. There was a peace and joy that was unlike anything else we had experienced.”

Finally, I would love to ask for additional prayers for some of our dear new friends who are also trisomy parents~
  • Audra, Lance and their ten children on earth.  Hadley Mae, in heaven, born August 11, 2013, passed January 30, 2014.
  • Kari, Robb and their two boys on earth.  Adelai Rose, in heaven, born May 8, 2014, passed May 8, 2014.
  • Anne and Nate.  Baby number one, in heaven, passed in utero last summer and are now expecting their sweet Ava Elizabeth sometime in the next week or two. 

My prayer:  God please be with our family as we are in the delivery room preparing to meet Simon.  We allow your will to do be done, Lord.  We will praise you regardless of the outcome.  Please remind us when the time comes to say goodbye to Simon that death is as beautiful as birth.  Never allow us to forget that the love we have for Simon is only a drop of water compared to the ocean of love you have for him.  Amen.


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