Today is Macayla's birthdays. Yes, plural. She was born on Earth on this day in 2001. Yet, at 11:25 p.m. on this day in 2010, she went Home to Christ and celebrated her birthday in heaven.
It has been a tougher week than usual. Normally, her birthday week, for reasons unknown and unexpected, has not been difficult, but this year its is. Memories are mysteriously sweet and painful.
Macayla is a gift. Her life is one to celebrate. I miss that life, of course, but I am so thankful for it. As much as I want her back, I cannot be so selfish as to wish her back from the healing and wholeness she now has. Her impact on us and others has been greater than we could imagine and we do not yet fully know all of the impact. I thank God for her and for giving her to us.
Happy Birthday, Macayla! And thank you for the gift you are and the joy you brought to our lives! Thank You, Lord, for allowing us to be her parents. Thank You for saving us and we look forward to seeing you both, face-to-face, one day!
"God will not give you more than you can handle."
"God won't give you more than you can bear."
"God never puts on us more than we can stand."
Wanna bet?! If we could ask Job in the Bible if God will allow more into your life than you can stand, what would he say? My family will testify that we have been through more than we can handle on our own strength.
This cliche creates all sorts of problems for us in the church. It is unbiblical, impractical, and deadly to our relationship with God. This is why...
Grief is a thief. It comes when you least expect it. It takes you off guard. Why did it slink in today? Why during car line at the school when I'm about to pick up the kids? There was no thought or memory that triggered it. It wasn't a song on the radio or something I saw. Suddenly, I was grieving over Macayla. I miss her so much.
Why then? God had a reason today. One of our twins was struggling. I could tell there was a lot of anger just waiting to boil over. I decided to press and see what was driving it. In the process, we had a God-sighting...
Macayla's First Christmas
This is our first Christmas with the twins and as I thought of that, I simultaneously realized this is our third Christmas without Macayla. It brought back memories that make me smile and tear up at the same time. Just as we are walking through old memories as we create new ones with our son and twins.
This made me go back and look at our Old Blog we started in the summer of 2006. It seems like forever ago and just like yesterday. In 2008, I also started a parallel blog called Uncommon Needs to talk shop about devices, meds, equipment, etc. for special needs. Time flies!
There are many families that need prayer right now as well as a helping hand. I hope to give both. There are families who are missing loved ones, and this may be their first Christmas without them. For me, the holidays weren't as hard as I expected the first year, but the second year was tougher. But grief doesn't care if it is Christmas or some random Tuesday; it comes when it comes.
Children are God's gift to us and we should cherish them. They only live with us for the first quarter of their lives (if they live 80 years). So time flies and we need to enjoy these moments while we have them, never taking them for granted. Celebrating our loved ones more than the stuff makes the memories last. Celebrating the One for which Christmas was named more than the stuff transforms our holiday back into a holy day.
This week, we lost the presence of another warrior child. Samuel had Leigh's Syndrome, a mitochondrial disease. The amazing family Samuel was born into faced a situation that was not unlike ours. Our experiences were not exactly the same, but they were in the same neighborhood.
Speaking of neighborhoods, this week many may be seeing green porch lights on in recognition of Mitochondrial Awareness Week. It is a way to shine some light on the struggle this disease brings to families all over the globe.
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.
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.
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.