Many people believe we live in a ‘bed of roses’. I must admit that I rarely post the really hard parts of our journey. I’m an eternal optimist, and usually see the ‘glass half full’. When people ask how it’s going, my general reply is, “It’s going well”. The thing is, ‘well’ is relative. Considering how things could be going, they are going Very Well. I’ve read and heard of many children who have struggled, whether with medical issues or adjustments, and we’ve been very blessed that, for the most part, ours have been easier than others.
With that said, I do want to share a bit of our journey that isn’t usually shared.
Because, let’s face it, even a bed of roses has its thorns (and weeds if we’re not careful)
As I type, I’m sitting at the hospital waiting for Meimei to get tubes in her ears. She has been diagnosed with some hearing loss, and has very small ear canals. Hopefully the tubes will prevent ear infections and increase her hearing. She also has a speech impediment that might improve once she has the ability to hear clearly. She will see a neurologist next week to see if she has craniostenosis, and whether any surgery needs to be done to correct it.
Next week Enya has the first of two bone grafts of her palate. They’ll take a small piece of bone from her hip and graft it into the roof of her mouth. They’ll do the right side of the palate first, and six to eight weeks later, they’ll do the left side of palate. Once that heals, she will have to have another surgery on her eye for the ptosis. The eyelid has started drooping enough that it is causing some impediment of her sight. In the summer, she will also have another lip revision. Thankfully, these are all outpatient, and Enya is a tough cookie. She too has some hearing loss, but her’s is permanent.
Nini’s medical issues are not so clear cut. When you are talking about neurological issues things can get a little murky. She has many different diagnoses that come together to create the perfect storm. We’re left never quite certain what is causing what issue. For example, she has an unsteady gait. Is it caused by the Chiari 1, CP, or ventriculomegaly? (Prior to the tethered cord release we could have had that on the list as well) She is being fitted for braces that come just above the ankles. Because of those weak muscles, her feet are collapsing inward, so we’re trying to prevent growth plate damage, and help with the pain she feels in her feet and legs. She has what amounts to a traumatic brain injury. Because she never had the shunt for the hydrocephalus, her brain received permanent damage. She is at a two year old level, and the doctors aren’t certain how much she will mature. She has memory loss. She does learn, but it is much slower than other kids her age. She recently came home from school and could name a few colors. Honestly, I wouldn’t have been prouder if someone showed me their college degree. What she learns comes with much effort, and is a reason to celebrate. I mentioned before that the neurosurgeon wanted to know if she could walk or speak when he first looked at her MRI. There is that much damage. It is truly miraculous that she does as well as she does. She has behavior issues that primarily show themselves only at home. We’re learning what causes her to spiral down, and try to avoid those when possible. She is on medication to replace a chemical which aids in calming her. The hardest part with Nini is that she is the sweetest little girl in the world, but there are emotions she isn’t capable of controlling, and learning barriers that cause her to work harder, but learn less. I haven’t found many – actually any- families who deal with these exact issues. (Though I am grateful to know another family who deals with behavior and learning issues, and we can share ideas of what works and what doesn’t.
We deal with so many different medical diagnoses in our home that my medical knowledge has expanded exponentially. It is a new ‘adventure’ every day, and we’re never quite sure what the day will hold. Currently, we’re dealing with a daughter who has some autistic-like symptoms, one with ADHD, another who probably has ADD, low vision, no vision, learning disabilities, language learners, and of course, attachment and bonding.
These are the thorns on the roses. But thorns (which by the way are really called prickles) are there for a reason. They protect those delicate blooms. For us, it protects us from self-reliance. We learned early on in our adoption process that our strength is not enough. We do not possess the love, patience, or wisdom needed for the garden we are tending. The challenges keep us reliant on the Only One who can do all things.
What is really a danger in that bed of roses are the weeds. When I fail to keep my eyes on God, the weeds start taking over. These weeds are the things that keep me from focusing on Him. There are days my head swims (well, truthfully, this is almost every day- lol!), days I want to cry (and days I do!!), days I think I can’t do this, and many days I feel I’m failing at EVERYTHING. There is so much I don’t know about the medical side of things. Many hurts I can’t heal. There is frustration with not having the answers, especially those that will never be clear-cut. If I allow them, they will keep me from the sweet fragrance all around me. They’ll keep me from focusing on the Master Gardener who blessed me with these precious blooms. They’ll have me looking around at problems and potential problems instead of inhaling the aroma of the bouquet He has placed in my home and in my heart. Our girls are the most beautiful , fragrant roses you’ll ever meet. They are funny, kind, tenderhearted, loving, and generous.
In every area of my life, I must be careful not to focus on the negative-which is not the same as burying my head in the sand. I’m well aware of the problems. I must choose each morning to recognize the weeds for what they are and give them over to God.