Weathering Medical Surprises

May 9, 2017 adopting a boy, adopting again, Brandie, hearing aids, hearing loss, heart defect, oral aversion, Sensory Processing Issues, speech delay, undiagnosed SN, VSD 2 Comments

At the first sign of a chilly night in the fall, my husband and daughter take tarps to their little garden to cover her cherished tomato plants, hoping to buy them a little more time before the cold winter claims them.

Around the same time, my husband and son begin the preparation for winter. They shut down our sprinkler system, and they bring the patio furniture into the garage. Inside, I begin scrambling to find winter coats, gloves, hats, and warm clothes that still fit from last year so that I can determine what I need to buy our children to keep warm and comfortable in the cold of a Midwest winter.

We are hard wired for self-protection and for the protection of what we deem valuable to us.

Sometimes, I think that adoption is much like preparation for winter. We check off the boxes of what needs to be done… home study, training, dossier, and all the other formalities. And then we go into self-protection mode.

For many, that means diving head first into everything we can get our hands on regarding our child’s special need. We arm ourselves with information, and we friend others on Facebook who have children with a similar diagnosis.

For me, that meant researching my future son’s heart defect. He was diagnosed with a VSD (ventricular septal defect — a hole in his heart) in China, but I mentally and emotionally prepared myself for something more serious. Because I had learned the terminology and read about the many different heart conditions, I was ready to hear whatever the cardiologist had to say at our first appointment. I mean, I had the app, you guys. I was prepared.

Self-protection.

So, as we do every year, we make it through the winter. Some days are colder than we expected, the frigid wind making us swear we’re not going outside again. And some days, we get a surprise burst of warmth, when the sun beams are so bright that the grass starts peeking up through the snow.

And, as with both adoptions, there were days of the torturous wait that I swore I’d never do it again. Soon enough, I’d get new pictures of my baby boy, his little smile lighting up the cold, dark days. Just enough to keep me focused on the goal of getting this sweet boy home in our arms.

Last year, as winter turned to spring, we adopted our boy. I secretly reviewed all the medical lingo before our cardiology appointment. Self-protection. I didn’t breathe as I watched the doctor perform an ultrasound of Caston’s heart, which looked like a severe weather map on steroids. I didn’t know what I was seeing, but as I stared anxiously at the screen, I imagined hearing things like “heart surgery” or “worse than the file stated.” Self-protection.

As it turned out, I could have left my armor at home. I didn’t need any of it. Our baby’s heart had healed. The tests Caston’s cardiologist performed showed a stellar little heart, and he scheduled our follow up for a year later. No restrictions. No worries. You can toss the armor, Mama.

I should have learned by now to expect the unexpected.

This year, in the Midwest in April, we hit a warm spell. It was a stretch of days so long that all the neighborhood kids were out again, running from house to house. They jumped on trampolines and climbed playsets in t-shirts and shorts. Our 7 year old asked to set up a lemonade stand. These were all sure signs we were through with the winter weather. I tossed the winter coats in a pile to be put into storage.

The bulbs had already sprung from the ground, and the trees had beautiful green buds. Just as we were settling into the idea of warmer days, the weather took a sudden turn, and all the signs of spring and life were covered in a few inches of snow. The trees limbs hung heavy with the weight of dense, wet snow. The daffodils were covered and drooping. This might kill them, I thought to myself.

The cardiologist appointment was our allegorical “warm spell”. It turns out that we were in for a “spring snow” ourselves. Although the cardiologist had great news for us, Caston still had many medical issues that were not in his referral from China, a series of big question marks.

Why did his breathing sound so horrible?
Why did formula sometimes come out of his nose?
Why didn’t he eat solid foods?
Why did he completely freak out over things like wind and water?
Why wasn’t he walking?
Why did he have no muscle tone in his arms and legs?

The worst to date came when he had to be transported via ambulance to the children’s hospital because of what was deemed a “choking incident”. Whatever was going on, I thought, this might kill him. This is too much for me. I had no armor. I had no self-protection prepared for any of this.

And I certainly couldn’t protect my newest son.



Over the course of the past eleven months, we have been to a total of 77 appointments to uncover some of Caston’s surprise diagnoses, and we are still in the process of discovery. We’ve seen two pediatricians, a gastroenterologist, two ENTs, a cardiologist, an endocrinologist, an asthma and allergy specialist, a geneticist, a craniofacial team of seven specialists, two speech pathologists, an occupational therapist, a physical therapist, a feeding therapist, three audiologists, a urologist, an optometrist, an opthamologist, two radiologists, a chiropractor, and two ER doctors.

(Kinda makes the 12 days of Christmas song seem easy now, right?)

Caston has had a swallow study, an upper GI, surgery twice for ear tubes, an adenoidectomy, a cyst removed from his nasal passage, a laryngoscopy, an upper endoscopy, and a sedated hearing test. We have encountered diagnoses of dysphagia, laryngomalacia, tracheomalacia, GERD, potential autoimmune disorders, reactive airway disease (asthma), possible submucous cleft, developmental delays (including a severe speech delay) and hearing loss.

And we’re not done.

It makes me wonder sometimes. Do the trees and bulbs expect it? Do they brace for the moment when there’s a sudden spring snow? Because maybe they were made to weather it? Perhaps the snow isn’t a threat. Perhaps its presence doesn’t serve to harm, but instead it gives them a good, slow deep watering as it melts. And in the end, their resilience is rewarded with beautiful flowers and blooms.



Many of us have been and will be faced with raising kiddos that are not what they appear to be on paper. We might be in a doozy of a surprise diagnosis. And what if, Mamas and Babas, we become better parents not in spite of this, but because of this?

More patience, more compassion, more sheer fight.

When I see Caston, I don’t see 77 doctors appointments and counting. I don’t see worry and inconvenience and unmet expectations. I see an amazing, resilient toddler who is our biggest cuddler. I see a little boy who just a few months ago couldn’t walk and who is now learning to navigate our staircase with help. I see a precious son who refused all solid food for months who now excitedly signs “more” and comes running when he hears the pantry door open. And I see a family who has grown in patience and love, working so hard with Caston to help him overcome his delays and challenges, celebrating even the smallest of triumphs.



There is no need for self-protection anymore.

My only fear is when I think about what would have become of my baby boy had someone not stepped up for him and provided the medical services and therapies he needed. It’s all these things that make me look at waiting children differently now. It makes me not fear the medical conditions I would have refused to consider before, like cerebral palsy or spina bifida. It takes away the fear of the unknowns.

Do I blame anyone for not providing this information in his referral? Honestly, no. It is simply not possible that Caston could have had access to medical care in China that we have given him here. There were not enough resources for a child who appeared healthy enough when he was surrounded by babies who had far greater and more urgent needs than he did.

Ultimately, I am thankful for the surprises. Had I known what our first year together would have entailed, my head would have said, “You can’t do this. You weren’t made to handle it.” But we have weathered our first year together, and we are all better for it.

Now, the reward for our resilience is seeing Caston learn sign language to communicate his needs.
Our reward is seeing our toddler absolutely love bath time which was a huge fear for him merely months ago.
Our reward is seeing Caston’s little bare feet running through the soft grass in our back yard with his brothers and sisters.

We soak up the rays of sunshine together. Because, for the time being, winter is certainly gone.



……….

If you’re in the midst of discovering medical surprises and undiagnosed special needs:

Know that you are not alone. Whatever surprise you are faced with, there’s probably a Facebook group for it. It is so reassuring to know that at any hour of the day, you can pop on and ask, “How do you keep your child’s hearing aids in while you’re in the car?” or simply, “Is this normal?”

Google is both your best friend and your worst enemy. Need to know how to put your child’s nebulizer or hearing aids back together? Google it. Trying to diagnose your child via WebMD? Walk away from the computer. It will not end well. Trust me on this. Whatever the issue, make an appointment with the appropriate medical specialist to discuss your concerns.

Stop saying, “I can’t do this,” even if it’s just silently to yourself. You can do it because you are doing it. In fact, you were made to weather this, Mama.





2 responses to “Weathering Medical Surprises”

  1. Denise Dunfee says:

    Brandie- you are a GREAT writer! Your love has provided Caston with an amazing family! You have a beautiful little boy! Thank goodness you found each other! He has been able to receive the medical care he needed!!! God is Great all the Time!

  2. Brett Butler says:

    You are a great writer and I appreciate your humility and humor amid a text that could seem very overwhelming.

    When I look at your son? I see security and so much potential. And those are things that can only grow when unyielding love is present.

    Thank you for sharing your story with us and God bless your family.

    Sincerely,

    Brett

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