Riding the unfathomable waves
Alex and I had our immediate family around us yesterday as we headed back to the hospital for another meeting with the doctors. As we sat together in the NICU with our loved ones - we started to hear the hard details of our exceedingly rare and sad case. The twins are suffering from nonketotic hyperglycinemia (or NKH), a very rare (1 in 250,000) genetic metabolic disorder that creates elevated levels of glycine - a basic animo acid - in the blood and brain. There is no known cure - and brain damage and eventual death is sure - even with the aggressive therapies that are available.
I can't express to you how hard this is. Sadness comes to us in waves. We cry in shifts - and are just trying to cope as best we can. Having our parents - and the support of our family and friends has been a tremendous help. After we visited the twins yesterday, we picked up Greer and headed out for some lunch and a little time at the duck pond. Just for a short time, we were able to push back the heartsickness and focus on our family - and most importantly, our beautiful boy. He truly is a blessing and a miracle.
Today we have an appointment to see the hospice doctor to discuss what our options might be if we were able to bring them home. We may not even have the opportunity - as both Eleanor and Quinn are now on assisted breathing.
As much as I anticipate seeing them again, there is an unfathomable pain that comes with it. It is like watching someone you desperately love disappear slowly into space. You know there is peace and the arms of eternity waiting for them, but you are left behind to bear the loss.
Please continue praying and thinking of us as we continue this journey.
I can't express to you how hard this is. Sadness comes to us in waves. We cry in shifts - and are just trying to cope as best we can. Having our parents - and the support of our family and friends has been a tremendous help. After we visited the twins yesterday, we picked up Greer and headed out for some lunch and a little time at the duck pond. Just for a short time, we were able to push back the heartsickness and focus on our family - and most importantly, our beautiful boy. He truly is a blessing and a miracle.
Today we have an appointment to see the hospice doctor to discuss what our options might be if we were able to bring them home. We may not even have the opportunity - as both Eleanor and Quinn are now on assisted breathing.
As much as I anticipate seeing them again, there is an unfathomable pain that comes with it. It is like watching someone you desperately love disappear slowly into space. You know there is peace and the arms of eternity waiting for them, but you are left behind to bear the loss.
Please continue praying and thinking of us as we continue this journey.
5 Comments:
Dear Greg,Alexis and Greercito,
Thanks for taking the time to stay connected through your blog. Out of the deep sadness and pain we share with you over Eleanor & Quinn's situation, we send our love and prayers. Someone once said, "after you jump into the darkness of the unknown, faith lets us believe that we will either land on solid ground, or we will be taught how to fly." Our hope is that you all can find the courage, the endurance, and the grace to walk this journey with your girls.
We wish we were there in Portland!
Your Comadres in Denver
By
Anonymous, at 2:29 PM
I work with Kristin Warner. I just want to let you know that my heart goes out to your family. I cannot imagine the pain you are going through right now. Just know there are alot of thoughts and prayers with you to help you get through this time.
By
Anonymous, at 9:58 AM
Our hearts break with yours, our tears fall with yours and our prayers are continualy being lifted to Jesus on your behalf.
Former The Dalles residents:
Gary & Laurel Deardorff
Paul & Dolores Trueb
By
Anonymous, at 3:22 PM
our hearts go out to you durring this most difficult time.we are familliar with your agony as we lost our first born son Austin to nkh in 1991 ,then our second born son Aaron was diagnosed with nkh as well in 1995 at 3 years of age.we suffer for your babies as well and wish all the strength god will provide.you are in our prayers always.
By
Anonymous, at 10:25 AM
we know the anguish you are ggoing through,we lost our first son Austin to nkh as a newborn in 1991,then our second son Aaron was diagnosed with nkh in 1995 at 3 years old.we are so sorry for the pain you and your children are in,but know that our hearts go out to you.I know you dont live in Boston but there is a very good dr there at the floating hospitale named marie Ampola.Good luck and may god watch over you.
By
ocoee mom, at 10:33 AM
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