We lost another child last week. It was not a surprise, but it still felt like a kick in the stomach.
Little Edy had been struggling for most of his time with us, which was over three years. He was missing a large part of his brain, and his brain stem was damaged. As a result, he would stop breathing on a regular basis. At some point, he stopped swallowing, so he had to be put in an NG tube. We never bothered having a G-tube installed because we were told that he did not have long to live, and we did not believe he would survive the surgery.
But day after day and month after month, Edy continued to fight. Many times we thought the end was near and we would say goodbye. But, in typical Edy fashion, he would turn a corner and improve, moving from near death to laughter in a few hours.
Over the last year, he had declined significantly. His bad days outnumber his good days, and we all began to pray that Jesus would take him home. But he continued to fight.
Wanda and I flew to the States on April 25th. The night before we left, I said goodbye to each of the children, and when I came to Edy I stayed with him a little longer. He was looking bad, and I wondered if he would live out the week. But, since I had thought he was dying so many times before, I shook it off and told myself he would fight through it, as always. But, as I said goodbye, I told him, “Little buddy, I will either see you in eight days, or when I get to heaven. Either way, I will see you soon.” It was the last time I saw him.
Wanda and I flew into Pennsylvania and participated in a family wedding that Saturday. On Sunday, we drove to Ohio to see our daughter, Ashley, and her family, including our new grandson, Sonny. We also visited with friends and spoke at a church. And on Thursday we drove back to PA. Before we left, I received a message from Katie Riley saying that Edy was not doing well. He had not been conscious for three days and was bloating badly, a sign that his internal organs were shutting down. While in the States, our Guatemalan cell phones do not work, so we rely on WiFi for communications. We committed to connect every time we stopped to check for updates.
At around 11:00 am we stopped for gas, and Wanda’s phone connected with someone’s WiFi. The message arrived then. Edy had passed away at around 10:25 am.
I had listened to his struggling breathing for the last two years. I had seen him worsen, and I had prayer that he would go to Jesus. Many times I held him and comforted and told him to stop fighting. Yet, when Wanda told me he was gone, it felt like a ton of bricks hit me. The grief of losing him, combined with the reality that we were not there and could not make it back by his funeral, completely overwhelmed me.
We stopped shortly after for an early lunch and to use WiFi to connect, comfort, and make sure the details were covered back home. Then we drove to get back to PA so we could fly out the next morning.
The next 36 hours until we were home with family was a blur. Grief, traveling, concern for those back home, thoughts of the funeral…they all came together in a fuzzy ball. When we were finally able to enter our home and hug our children (by blood, adoption, and internship) I finally felt like I could breath again.
For our family, grief can be difficult, because we are not allowed the same space to grieve that others are given. We have lost nine children from our two homes. Each time, the grief threatened to overwhelm us. And, in some case, the grief was accompanied by the trauma of sudden death and the frantic activity of CPR. And, each time, our family and interns grieved deeply.
But, in many cases, there is a failure to understand our grief. While it is never spoken out loud, the attitude is regularly conveyed that it is not as hard for us when we lose a child because they are not really our children. They are just children in our group home, and we signed up for these kinds of things. So we are not given space.
I am not trying to complain, just making an observation. More is expected of us than would ever be expected of other parents and siblings that had just lost a son or brother. Whereas other parents who had just lost a child would be visited, comforted, receive food gifts, and be encouraged to grieve and talk about their loss, we are not. Brief words are exchanged, and the conversation moves on.
We moved to Guatemala to be a family to children without a family, not to be an institution. Ever child in our home calls us mom and dad, and we call them our sons and daughters. Our biological and adopted children call the kids in our home their brothers and sisters. We love them as our own family, because they are. Yes, our family is way bigger than most, but the size makes us no less of a family and does nothing to diminish our grief when one of them leaves us. It does not make it easier when we prepare their little bodies for burial and place them in little coffins. It does not diminish the grief of standing beside their tomb. It wounds us to the core of our being.
When this happens, I want to be able to take a week off to be with my family and grieve. I want to be able to talk with friends about it instead of receiving a cursory condolence and moving on to the next topic. But I don’t have that freedom. Nor do Wanda and our children.
My friend, Drew, helps me a lot. He listens and understands my need to grieve. He keeps encouraging me to talk and let it out. I met with him two days ago and told about my fear. I am afraid that if I let down the spill gate on the dam that is holding back my grief of all the children we have lost that the flood would drown me. That, once it starts, it might never stop.
At the same time, I realize that holding back my grief is ugly, as well. It bottles up inside me and comes out in the form of anger and impatience. I lose my joy and begin to isolate myself. Even small tasks seem overwhelming. So, I have to let it out. But I have to find people who understand and will give me room to grieve. Drew is one of those people. Wanda is another. Dick is another. And I am learning that they have to be enough.
People often tell Wanda and I how strong we are. They really have no idea how weak we are. If they could see us in the privacy of our room as we struggle to figure out how to keep going, how to keep our marriage and family healthy, and how to get up the next morning…they would not call us strong.
So, we can only throw our tired and discouraged selves into the arms of Jesus and trust God’s promise that in our weakness, He is strong.
A song that has ministered to me over the last week has been “See You In a Little While” by Steven Curtis Chapman. I will leave you with the lyrics.
I hold your hand and watch as the sun slowly fades
Far in the distance the Father is calling your name
And it’s time for you to go home
And everything in me wants to hold on
But I’m letting you go with this goodbye kiss and this promise
I’ll see you in a little while
I’ll see you in a little while
It won’t be too long now
We’ll see it on the other side
The wait was only the blink of an eye
So I’m not gonna say goodbye
‘Cause I’ll see you in a little while
And just one more thing before I let you go
Please tell my little girl I love her
Though I’m sure she already knows
And ask the Father to please tell the Son
That we’re ready and waiting for Him to come
I’ll see you in a little while
I’ll see you in a little while
It won’t be too long now
We’ll see it on the other side
The wait was only the blink of an eye
So I’m not gonna say goodbye
‘Cause I’ll see you in a little while
Maybe you’ll teach me all the songs they sing in heaven
Maybe you’ll show me how you can fly
And I’ll hear you laugh again
And we won’t remember when
We were not together and this time it’s forever
I’ll see you in a little while
I’ll see you in a little while
It won’t be too long now
We’ll see it on the other side
The wait was only the blink of an eye
So I’m not gonna say goodbye
‘Cause I’ll see you in a little while
I’m gonna see you in a little while
Blessings from Guatemala,
Daryl, Wanda, and the Crew
