This is one.
This photo captured the day we told the boys their sister had a life-limiting genetic condition called Trisomy 18. This photo was taken just moments before our lives as we knew it would be no more.
Everly was born in February 20, 2014. Unlike most, we did not have a confirmed prenatal diagnosis of Trisomy 18. At our 20 week check up, there was a concern and then at 23 weeks, there was a suspicion of T18. However, in the subsequent weeks, that concern went by the wayside and it was thought to be a congenital heart defect alone.
Nothing more.
On Everly's 5th day of life, our doctor sat us down and gave us news that would forever change our lives. Our perfect little girl had a chromosomal defect that the medical community considers fatal. That day we began to grieve the loss of the life we thought we would share with her.
The news shattered us. Devastated our family. Brought to light fears we never even knew existed.
We spent one full day letting the news soak in before we had the boys come to the hospital to share with them as well. How do you prepare to tell your children something so awful? Garren, at age 15, knew as soon as we started to speak what we were going to say. He remembered the 3 week period early on in my pregnancy the doctor suspected Trisomy 18. It was such a difficult day to watch the agony, the questioning, the confusion and to know not only could you NOT do anything about it but you felt the exact same way as their parent.
I look back and remember the anxiety we had as adults thinking about telling the boys their sister may not make it home. To us, we only knew what we were told...most babies don't make it but a very brief time after birth.
So, we had no expectation she would then spend 11 glorious months with us...experiencing the BEST life! No, on this day, we thought we should begin preparing for the end. We didn't reach our point of hope until we began to listen to HER and let HER lead us! It was then that we began to look toward our newly created BUCKET LIST for her with excitement, hope and joy! Our list started with just riding in the van, feeling the sun on her face, sleeping in her house. Who would EVER guess this special BABY BUCKET LIST would include riding in a BOAT, visiting the MOUNTAINS, and meeting SANTA CLAUS?? Not only did we get to do her first little list of three things but her list grew to eventually top 100 AMAZING experiences we shared as a family!
What is a challenge for us is why other families do not get this chance? Why even our family didn't get to see one year? Five years? Or her lifetime? It's impossible to not ask this difficult questions. I can only answer that it is not us in charge and our God does turn ALL things for good. Why do we need to experience what seems like the depths of HELL to get to the GOOD? We will not fully understand in this lifetime. That I know. Common platitudes given in times of crises fall on deaf ears when you've lost a child. Ask who has experienced it. However, I can tell you that the peace we feel comes from knowing that He is in control and that He walks beside us, carrying us as necessary. It is not true that God will not give us more than we can handle. I can tell you firsthand that losing my Everly was 100% no doubt, absolutely more than I could handle alone. Without Him, I would not be able to get out of bed, function for my two boys, move forward. No, it IS because of HIM that I CAN choose JOY each and every day.
So, I look at this picture taken when Everly was 6 days old, 1 day before my 41st birthday, and I am so grateful that our family CHOSE life for Everly.
We chose to spend each and every day living in the moment, being intentional in our time. We made this choice on good days and on bad days. Our Sweet Pea's diagnosis would not stop us from LIVING, from experiencing. Yes, it was hard and yes, there were challenges. But our desire to be purposeful with our hours, days, weeks was a conscious decision.
One that we remain so grateful for...each and every day.
You might not be in the same situation we were in, you might not have a medical diagnosis. But if you are not living your life to the fullest, today is the day you can make a change. Small steps.
Enjoy this moment. Do something you love. Live with purpose. Strive to make a difference. Have no regrets.
Be intentional in your interactions, plans, life, relationships.
Today is the day. Do it for Everly. Do it for yourself.
With love,
Crystal
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