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There are seasons in life that shake everything. These seasons are often set off by explosive events that take us by surprise and leave us in shock- pieces of expected norms scattered all around us. We don’t always choose these times but these times seem to choose us.
For my wife Pam and I the explosive event was the birth of our sixth and final child, our son Elias Ben Abram. While a new child always changes everything- Elias’ birth challenged all out preconceived notions of what we thought our life would look like- all our plans came to a crashing stop. Shortly after he was born we discovered he has Down Syndrome and in turn a congenital heart defect. Since then it’s been a roller coaster of emotions and doctor visits and a journey to find grace in the midst of the storm. Because he has a weakened immune system last week we spent around five days at UVA hospital in Charlottesville, VA after a bad cold turned into pneumonia. In six weeks or so we will return to UVA for Elias’ heart surgery and then stay for another week of recovery time. The official date for heart surgery is set for April 8th.
Because of all this, around a month ago, we made the difficult decision of temporarily moving off of the farm we live on to seek needed support from my wife’s parents who live thirty minutes from us in the suburbs. We plan on going back sometime after Elias’ surgery but as the weather turns warm and Winter gives way to Spring we won’t be doing our typical large garden plot. Instead of cultivating vegetables we will be cultivating the recovery and healing of our son. We had also planned on starting chickens this year but that is being put on hold. The older couple who owns the farm we live on plan on still doing a garden and thoughts about chickens still simmer on the back burners of our minds but we have to start asking ourselves: what does the new normal look like?
This Spring consider planting a row of vegetables for us as a reminder to pray for Elias and our family.
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Our family is praying for your son. You are wise and loving parents. My sister has a baby daughter with Down Syndrome and a heart defect; she had surgery at 4 weeks and is now doing so well. May God give you peace and healing.
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
(Casting Crowns)
Thank you Lynn for your prayers. We appreciate your kindness and encouragement.
Brother, you guys are in the prayers of our family.
Thank you Dave. We need it now more than ever.
Wow… tears, as I feel for your challenges, and am encouraged by your courage and love. May you know Christ in a very real way as you walk through this valley. I love your vision for life, and am mindful, as I just preached last week, that we can have vision, a rich life, and searing pain and loss – all the at the same time. Blessings to you… and our Kale will be for remembering you
Richard: Thank you for the encouragement, your prayers and remembering us as you cultivate your kale. -shalom brother!
As you know, Down Syndrome is “Trisomy 21.” I had a daughter with Trisomy 18. She beat all the odds of this chromosomal disorder deemed “incompatible with life.” After surviving to full term after a premature rutpure of membranes at 15 weeks, she was with us seven days shy of seven months. Seven people accepted an invitation to a personal relationship with Jesus Christ at her Memorial Service. We were back and forth to the hospital for check ups and longer stays pretty regularly.
I do know the sadness, pain, frustration, depression, anger, peace, acceptance… I have been there. I know the road you are traveling is not an easy one. 60 years ago, your precious little Elias would have been considered “not worth saving.” Praise God, medicine has come so far that people now see the absolute blessing in having a special child. Is this going to be an easy road? Doubtful. Will you be different people as you grow and learn this new normal? Most definitely. Will your life, though different than what you knew, be all the richer for having your circumstances change? I’m pretty sure it will.
While this next season of your life will bring changes, it is infinitely important to cling to your faith, as I’m sure you know. It is only through my faith that I have come through the tough parts of my journey with peace and acceptance. I know you can , too.
I will be remembering you all in my prayers.
Sherry, thank you for your prayers and the encouragement and thank you for sharing about your daughter. We are blessed that popular opinion about people with Trisomy 21 and other similar syndromes,etc has changed- and that their value as people is now widely accepted. We were told by our cardiologist that years ago heart surgery would not even have been considered for Elias because he has Down Syndrome – so things have definitely changed- and we are grateful.
We also have been enriched by these trials and our walk with the LORD has become (and is becoming) transformed for the better as we learn to lean on Jesus in a more real way- He has become our strength- even when we are at our ropes’ end. – thanks for the comment! shalom!