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!
Handicap. Special Needs. Exceptional. Medically Fragile. There are different ways people try to label or explain situations like our daughter, Macayla. The designation is important as it keeps us aware, aware that everyone's needs are a little different.
Children like Macayla have uncommon needs. It is not common to need a feeding tube, wheelchair, or anticonvulsants. I guess that is why I prefer the term "special needs."
We are experiencing other uncommon needs. Adopted children struggle in ways that are uncommon in one sense, but in another sense, their needs are ones to which we can all relate....
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.
Photo: Jeremy Bathan
You teach your child how to do a basic task like brush his teeth, wash his hair, or turn the light off as he leaves a room. Yet, he doesn't seem to get it. The task is either ignored or done improperly almost every time. You teach him to stop lying or being defiant over the simplest of issues, but he continues. Month after month and still there is little, if any, progress. Why?
There are several possibilities and we are learning about them. There can be anatomical problems in the brain that prohibit or frustrates learning. In our case, we have no idea with our adopted children what kind, if any, damage may have occurred due to in utero exposure to drugs or alcohol. If there was any, it appears to be very mild. Another possibility would be a learning disability or learning style issue. I put these together since their definition is often disputed or misapplied and identifying them is not always clear-cut. Then, there is also the matter of trust and selfishness. This leads to, and simultaneously feeds on, anxiety and obsessive/compulsive behavior.
I have spoken with several couples or hear of couples whose marriages are falling apart. It is common in our culture and even more so among families with special-needs children. They separate or get divorced and often point to the stresses of the special-needs as the source of their failing marriage.
I disagree. We cannot blame special-needs, finances, or "falling out of love" with our spouse for divorce. Here is why I say this...
Raising children is about transformation. Children transform physically, emotionally, mentally, and spiritually. We can list these areas out separately as a way to talk about them, but they all are intertwined. The child as a whole person transforms.
"Regular" kids, special-needs kids, and adopted kids all go through this and along the way it transforms the parents as well. Having a special-needs daughter made us prioritize life differently than we would have otherwise. We believe this impacted Jacob, our "regular" kid, for the positive. Likewise, our adopted twins highlight the same need to prioritize life but in different ways. God is using this to shape our family as well.
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.
I have been reading a book co-authored by Karyn Purvis called Connected Child. I can only speak for the first four chapters so far, but I think they are insightful chapters!
The book is about how to parent adopted children from abusive backgrounds. I first heard about this book through the resources listing on the Show Hope website, Steven Curtis Chapman's adoption ministry. I think the book is worth checking out and maybe even refer extended family (grandparents and others) to it to help give them insight into what is going on with the newest members of the family.
A recent trip to the beach to hang out with extended family went well, but upon coming home, we realized how difficult it was for our twins. It was a week full of establishing new relationships and relationships are some of the scariest things for them to face because of their background. It helped us see how to anticipate their struggles a little better and prepare them for meeting more of the family.
Us at Hilton Head Island. Photos coming soon!
One of the challenges the twins face is academic. For multiple reasons, they are missing some essential and foundational skills for learning. The missing pieces are inconsistent and scattered, more like a disorder than a delay. My wife, Jennifer, describes it like a tower of Jenga blocks where multiple blocks are missing. Their "towers" can't be built any higher because some key blocks are missing. In fact, we used these blocks to explain visually to the kids why they struggle with school. We have enrolled them in what we believe will be a game changer, not only for them, but for us too!
We truly thought the adoption process was going to be a challenge, but it pales in comparison to the adjustment and challenge of new children living in the home. We knew going in, there would be behavior problems and challenges. We knew God was calling us to adopt. We read books and articles. We spoke with friends who adopted or were fostering. We prayed and thought about "worst-case scenarios" to prepare. But there is nothing like experience and some experiences cannot be prepared for...or can they?