No words needed.
Since finding Everly's diagnosis last Tuesday...the one we'll never forget..February 25, 2014...we've been inundated with meetings.
Not just a meeting here or there. No. Meetings that last hours, repeat meetings, group meetings, phone conferences, you name it and we've had it. Some we've requested, others we've needed and still others just seem to happen out of our control.
Our meetings really consisted of things that no parents of a newborn should be involved in...ever. What kind of measures would you like for your daughter? What is your definition of quality of life? Do you know who you would like to call in the end? All the questions have been asked in best interest of Everly but they sting, hurt and bite nonetheless. You think you're doing "okay" for a brief moment and then someone reminds you that your daughter has a terminal diagnosis. Then you're not okay anymore.
We've had the heaviest of decisions to make at a time when we aren't at our best. So, we've gone a bit slower in making them so we can know that we've considered all the angles. That has delayed our return home a bit but we believe it will best in the long run. My mom has also helped us to navigate this unknown and rocky road as well. Having her sense of clarity has been most needed.
We always have the opportunity to change our minds and change routes but ultimately we are moving forward in the way we feel is best for Everly. Not us. It's not about us. God has granted us this precious time with this sweet pea and we want to honor her life during this time. For us, it means that we will let God decide when it's time for her to come home. So making the decision and signing papers stating that we will not do any extraordinary measures to extend her life has been the most heart wrenching of all decisions we've made. We have been told we can always change our mind. But we knew from the beginning that how long she is with us isn't for us to decide and to extend her life to make us "happy" is not in her best interest.
Proud biggest brother!!
We want her home. We want her to hear the sound of the boys shooting nerf darts. We want her to hear Ala bark when she's excited. We want her to feel the sun on her body. We want to have family movie nights with her snuggled in with one of the boys. We want to read her bedtime stories in our home. We want her to see her room. We want her to hear the ocean waves. We want her to hike with us. We want her to smile and laugh when her brothers make goofy faces. We want what any parent wants for their child. We want her to experience our life as it is at home right where she should be. That's our hope for her.
Those extraordinary life-saving measures would most likely end up with her up spending her days in the hospital. Pokes, prods, beeps, painful procedures, life in a building. That isn't the hope we have for her. While all parents in similar situations have this decision to make, we made ours within minutes of the diagnosis. We have not looked back on this decision and while it will be beyond any human level of pain, we know that when the time comes, we will know that she has had the best life possible!
As a parent of a child with Trisomy 18, the odds are stacked against her based on all medical research. She's already defied the odds. Today is her 14th day birthday! The medical literature tells us that 50% of babies don't make it to birth and less than 10% make it to their 1st birthday. Guess what? Our hope is that she has the biggest first birthday bash ever! While I know what the medical community says, I know my God is bigger. Only He knows the plans he has for her. Only He knows how her life will impact others. So many in the medical community have a preconceived notion about the life expectancy of these sweet babies. So many don't even have hope for them. Unfortunately, I experienced it first hand a couple of days ago. But I say in response, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
I would like to ask all who are following to please share Everly's Facebook page "Love for Everly" and her website. We are desperate to let others know that while babies with this diagnosis have a "bleak future" and one deemed "incompatible with life"...it isn't a life without hope...it isn't a life without joy and love...and it isn't a life without quality. We know that the diagnosis will not change, we know what the odds are but we also know without a shadow of a doubt that we should "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." Proverbs 3:5-6 While our road ahead is unfamiliar, we realize how incredibly blessed we are to have been given this sweet life to love and nurture. We are humbled and honored to have been handpicked to be her parents and would not change places with anyone.
Thank you all for continuing to love us, love her, love our whole family. Thank you all for continuing to lift us all up in prayer. Thank you all for the meals that will be even more invaluable to us as we arrive home tomorrow. Thank you for your support to provide the things that she will need. Thank you for respecting our need for some family privacy and time together.
We will be okay. We will make it through. We will continue to lift up our Father's name and to give Him the glory.
"Now faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1
"As for God, his way is perfect: The LORD's word is flawless; he shields all who take refuge in him." Psalm 18:30
With love and appreciation,
Crystal & Jimmy
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