We are about to go from a family of three to a family of five! We are adopting. We are not allowed give a lot of detail at this point, but we have two coming to live with us soon. We hope they are living with us by Easter! Then we hope the adoption will be finalized by late summer or early fall, but we are not sure of timelines yet. If they are living with us by Easter, I think it is very fitting.
Easter has lost its importance in American culture. Even many Christians have lost sight of Resurrection Sunday’s significance. Christmas is just more “fun” to celebrate and we tend to prefer babies over crosses and tombs. But the cross and tomb are so much more. That which is most worthy of celebration is around the corner, and we may not give it much thought until the Saturday night before, as we pick out our “Easter clothes” for church or pictures.
A young guy we know, named Hunter, has gone Home this week after his battle with Battens disease. He was nine years old like Macayla. When we lose a child or witness the loss of a child, it brings up many questions and feelings. It is so hard to understand, but there is more to the story.
Be sure of one thing, God did not create Battens disease! Battens disease is a mutation, which means it is a deviation from what was intended, from what was created. Battens disease, along with every other way to die came from one decision. The Bible gives us a picture of God creating everything, weaving together different parts of creation, and once it was all finished, God looked at all He made and said it was “very good.” That means perfect. That means no Battens disease, no death. Humans were part of that creation and in order for creation to be “very good” humans had to be able to experience God’s love. In oder for humans to truly experience God’s love, they had to be able to choose it. If love can’t be chosen, it is not truly love. But with choice comes the real possibility that selfishness, not love, will be chosen.
Along the New River in North Carolina, there is 160 acres of beautiful land where families with special needs can go for a rare blessing. Freedom.
We have been blessed as a special-needs family to go to this place called Camp New Hope. We experienced freedom from doctor’s visits, housework, cell phones ringing continuously, and freedom from the weight of our daily grind. Going on vacation with a medically fragile child can be not only a logistical challenge, but an emotional challenge as well.
Grief is Sneaky
Grief is a journey, as the saying goes, but it always surprises me. For me it has never been a constant feeling hanging over my head or weighing on my heart. It is more like waking up one day to find a mysterious bruise on your arm that is really sore to the touch and all week long you keep bumping it.
I have found that some situations can trigger it. But more often, a glance at a photo or a situation suddenly makes you aware that grief is already there. Yesterday, the photo of Macayla by my bed made me realize the bruise of grief was there and very sore. Today, driving by the Krispy Kreme doughnut sign bumped that bruise again. Macayla loved those things! On the way to church, we would pass that lit up, glorious neon beacon declaring, “Hot Doughnuts NOW!” and Macayla would say, “Doughnut?”
I recently saw a family and their special-needs child. It had been a while since we had seen each other. I must admit the jealousy that crept up in me because their child is still with them, but God reminded me to rejoice with them instead. He reminded me to rejoice for the fact that Macayla is whole now because Christ is indeed the resurrection and the life.
Macayla is free. I miss her. I wish I could buy her a doughnut.
Had a vivid dream this morning. Went to pick up Macayla from a home she was staying in. The dream never explained why she was in this home and not in ours, but we had not seen her in a long time and there she was. She was sitting in a recliner with the TV going and a nurse sitting next to her. When I walked into the room, I called her name and that wonderful smile came over her face! I was so excited that I literally fell over the recliner trying to get to her! She laughed even though she could not see me. She wiggled in her seat like she used to and got excited. I was able to stroke her hair and give her kisses. I made the noises she liked to hear and the smiles kept coming.
The the cruel reality set in. I looked up at Jennifer and said, “We need to get her home. Why hasn’t she been at home?” The dream started to fall apart as I realized Macayla died over a year ago. The dreamscape disintegrated, revealing my bedroom. I woke up empty.
But there is something better than a dream in our future. In fact, it is more real than anything here and now. We will see our girl again. She will do more than wiggle and squirm in a recliner. She will have full sight, the fullest sight possible. She will run and dance! I have all faith in what Christ has promised. There is a reunion coming, but waiting for it is tough.
I still find myself looking at items in Lowe’s or Wal-mart and think, “How could that be modified to fit on a wheelchair?” I still have a desire to tinker and invent things that inexpensively solve challenges created by special-needs. I have even been brainstorming about a portable misting station that has a self-contained water supply. That is so needed here in the South during the summer!
So, I still maintain the blog Uncommon Needs. It has all of the more technical stuff about equipment, medications, feeding pumps, etc. It also has links to equipment providers and a few ideas I came up with, such as a beach wheelchair that was cheaper to make than to buy one. There is also my special-needs bike trailer on there. These are the more popular posts for the summer. Please contact me if you have any questions or if you have ideas others can benefit from, please share them here or on the Uncommon Needs blog where appropriate.
As is often the case with grief, it is quite sneaky and can be the unexpected and unwelcome visitor. While getting something out of the cupboard, I caught a glimpse of the mortar and pedestal we used to crush Macayla’s meds. Later in the day, I saw a black Dodge hightop conversion van in front of Lowe’s and wished I was still driving ours, because it would mean Macayla was still with us. Then we had pasta for dinner and all I could think about is Macayla’s love for noodles. They were just memories, but for some reason these were not the kind that bring sweet sentiment. They brought fresh pain.