The last few weeks have been very
challenging. I'm sure if you keep up on social media with anyone in
the ministry you have heard a lot about this. Honestly I haven't
wanted to write any of this. On May second we lost Edy after he
fought for years. Daryl and Wanda were in the states, which made it
harder on them, and harder on us to not be all together. But the
team here came together. So many people from all areas of the
ministry stepped up to help cover things. So the next morning, on
May 3, we had Edy's funeral, and buried him in a tomb. I can't say
much about the funeral because it was a bit of a blur to me; unreal
maybe. It is sad that we have almost a routine about how to arrange
a child's funeral. We have made the short walk to the cemetery too
many times. 
So many people loved Edy. He was
surrounded by it every day and loving arms carried him home. So now
we have begun the necessary, but hard details like giving his
wheelchair to baby David, who desperately needed one tat small. But
it is Edy's chair and it hurts to see someone else sitting in it.
It is confusing to the kids who comprehend in varying levels. Cesar
sees David in Edy's chair and asks where Edy is. We didn't have
enough space to fit beds well in the boys room, but now we do. We
pulled his name out of the med chart because accidentally setting up
and dumping his meds is expensive. His towel has passed to Kevin,
and it feels wrong to see Kevin wrapped in it. Soon cloths too need
to go to the other boys his size who really need longer pants. But
how do you do that and not feel like you are forgetting him? I know
we aren't, but why is it so hard to peel off a simple label.
Nearly 2 weeks later and I still expect
to see him when I go down in the morning. When it is my night to
watch the monitor I wake up abruptly because I can't hear his labored
breathing and in my dream he just stopped breathing again. I want to
grab him for snuggles when I call home, have computer work, or
reading to do. I miss his hair through my fingers, and his tiny
hands wrapped around my thumb. I regret that my family now can never
meet him. I miss his huge eyes and every facial expression from
scowling or crossed eyes, to a side grin or his full face smiles
that brought his head around. Sometimes I stop and remember just
what he felt like curled in my arms, head bobbing from the effort
every breath took for him.
I remember, and it hurts not to have
him. But I prayed for this. I prayed that his suffering would come
to an end, and that he would know peace. And I praise God that he
breaths without pain now. That he sees the face of his creator and
knows true joy. Edy always had so much joy here, despite tubes, and
coughing, and spasms. I know however, that here it is only a poor
reflection of the joy he encounters now with Christ.
Elsewhere, life keeps going in the
home. More diapers, meds, and therapies. Just a few moments are
here. Esther is practicing standing. She really hates this, but she
really loves food. So members of our team get creative in motivating
her to stand.
Livni is our night nanny, and loves our
kids deeply without often seeing many of them awake. Here is a
precious moment I caught the other morning when I came down.
Humberto's feeding tube popped (which
happens from time to time), so we got to insert his new button port
from the states. Now his tube doesn't get caught on anything, and
doesn't get so infected. It also is better than the button port
Walter has because it has a one way membrane on it that doesn't let
fluid pass. This means no more tube feed spills!!
As a family we were blessed to be able
to go together to see a movie we all enjoy a lot; Avengers End Game.
This may seem silly, but after the week we had had, getting excited
about this long awaited finale was quite a release. The Alvarez
family covered both houses so we could go together. Whether practice
for their home, or just fun with the kids, it was a great blessing.
I had a moment to think the day Edy
died, and I posted it quickly to facebook. Two weeks later I'm still set on this.
“Edy is finally home. Free from pain, and gasping, and sharp spasms and tubes in his nose, and hurt. Breathing easily, seeing beauty, walking and running with the king. Edy took his first breath without pain today. And my arms feel empty. God thank you for the gift of this child. And thank you for bringing him peace. He was loved in person and from afar. And he has impacted more lives than he could ever have known. Edy was a missionary himself teaching people about the deep and profound love of God. I praise God for every moment I got to spend with him. Every hug, kiss, cuddle, laugh and smile. Also for the hard moments of medications, tubes, suctioning, crying and spasms. Edy was so crazy loved by so many. And God is so good. Thank you God for letting me be a part of Edys life. And thank you God that he is finally free.”.
x
