There are days when I could cry if one more person says “Oh he looks great, he must be doing well!”. Of course, they’re all well-meaning. I know. It’s just a little disheartening when you’re in a struggle and everyone tries to congratulate you on a success that isn’t real.
When your child is fighting invisible conditions, it’s hard for people to look at a beautiful toddler and see that their life is in jeopardy, every moment of the day. There are days when I just smile and nod because a long explanation is going to take more time than we’ve both got. Of course, I am grateful that someone cares enough to stop and ask how he’s doing. It’s just the misconception that if someone looks okay on the outside, that they must be okay on the inside. It isn’t true. What’s worse, is when you’re the mom, and you look at your seemingly healthy child and have to find the one tiny thing that might be out of place. That one thing to indicate that he isn’t well. The detail so minute that most would glance over. Even my husband would admit there are times when he thinks my son is okay and I insist that I see that one subtle sign. Sure enough, we end up scoring more frequent flyer miles at the children’s hospital.
My rare superhero is my second child. My first was such a breeze, truly. I remember lying next to her and just trying to remember every beautiful detail of her face, soaking in her laugh, her smell, and those sweet baby kisses. Motherhood with my son started the same way, until one day, things were just different. Now when I look at my son, I try to enjoy all of those same things, but when I look at him, my eyes are like an x-ray machine, looking for any sign that he’s in distress. His rare conditions have robbed me of that blissfulness.
When my gut first told me something was wrong, we rushed him to the emergency room. I tried to explain to the physician that things just didn’t seem right, something was off. His personality was gone. He didn’t blink. He was staring out in “space”. The doctor took one look at him and without running a single test, he sent us home. He said he “looks fine”. He was “perfectly healthy” and suggested we go home and “enjoy” him. He blamed new mom paranoia. I’ll admit, for a brief moment, I wondered if he was right. We went home. My mind racing in so many directions.
Was I seeing something that wasn’t there?
Was I trying to find something wrong?
Why do I see things that no one else sees?
Those thoughts were short lived. As most moms (and dads) know, when you feel something in your gut, there’s no stopping your mission. A few days after the first ER turned us away, I took him to a second one. Within 30 minutes of arriving, we all knew something was dangerously wrong. My son was near death due to hypoglycemia, and he was still functioning, like “normal”. He just doesn’t show typical signs. He is “hypoglycemic unaware”. Low glucose in nearly undetectable by looking at him. To top it off, his disease is the number one cause of irreversible brain damage in infants. He has Congenital Hyperinsulinism. That’s some pressure.
He was also born with two rare congenital birth defects in his larynx masked by silent aspiration. Silent aspiration is when a person aspirates on liquids or solids and shows ZERO outward signs. There is no coughing. No eyes watering. Nothing to indicate that the person has inhaled liquid right down into their lungs. I didn’t even know that was a “thing”. After fielding through several diagnoses and suffering from permanent lung damage, we are hopefully, finally, on the road to recovery.
Having a child with invisible conditions has made me question my own sanity. I wonder how people view me. Do they think I over exaggerate? Do they think I’m paranoid? If they are caring for him, will they miss those tiny, but important, signs? Will they brush them off? Will they ever understand? Who knows.
To try to give you a little perspective – If you can, imagine your dream home. You know, that house that you’ve day dreamed about. The one you’ll buy with your lottery winnings. It’s beautiful and everything you ever wanted. Incredible curb appeal. The picket fence you’ve always wanted. The wrap around porch. Enough room for the tallest Christmas trees. Spiral staircases. Every add-on you could imagine. Inside you will find everything that means something to you. Your whole heart is inside that house. There’s just one catch, it’s built on a sinkhole. It could all crumble at any moment. That’s what an invisible disease often feels like, for me anyway.
Or, maybe a better analogy would be to imagine that you have a beautiful, intelligent, loving, little boy. He completes your family. He makes your life whole. He has a wonderful life ahead of him. A life that he has had to fight, every single day to have. Inside of him are diseases and conditions that most of the world has never heard of, and you have to be on guard every moment of the day, to get him to the next. You have to see what most can’t. Complacency is never an option.
Most moms in my shoes will tell you that we’re grateful for what we have, well, because WE ARE. I love my children. As perfectly imperfect as we all are, this is the journey we’ve been given. We have a huge support system and my heart is in debt to the kindness we’ve been shown. It’s just a hard road especially when everything looks okay on the outside. What you see, is often deceiving. For my family, rare is our reality and it looks really pretty from the outside. On the inside? Well… that depends on the day.
Update on our little superhero:
We’ve recently had to increase his diazoxide dose to the highest amount since diagnosis, 12.3mg/kg. For almost two weeks he has become more unstable than he’s been since he was discharged in September. Oddly, only in the mornings/early afternoons. Some days in the 40s, but mostly low 50s/60s. 60s aren’t really too bad and not such a concern. But 40s and low 50s are a sign that something has clearly changed, especially when it happens within 45 minutes of eating. We don’t know why the sudden change. Once he reaches 15mg/kg of medication, we will have no choice but to seek other forms of treatment which include; injectable medication, feeding tube, or after we exhaust all other options, a near total pancreatectomy. Hopefully it doesn’t get that far, that would be the last thing that we’d want, but if he continues his pattern, we may have no choice. Before any of that, Dr. Paul wants him admitted back to Texas Children’s for closer observation, labs, and controlled diet, testing various meal types. If things don’t improve over the weekend, I suspect he’ll be readmitted next week. Despite all that, this kid is a trooper. You’d never know by looking at him that he’s so sick. Which is scary for those watching him, but I’m grateful that at such a young age, he enjoys life so much. ❤
On Wednesday, we had our genetics appointment with Dr. Craigen. We have one more test to run called Global MAPS. This test will look for biochemical abnormalities in his plasma. If that is inconclusive, our final step in the genetic discovery will be applying to be in the Undiagnosed Disease Network (UDN). There is no guarantee that we’ll be accepted but we have a passionate endocrinologist with a strong genetics background championing Jackson’s case to the board. Dr. Nadia Merchant will present his case and will work to forward not only his case, but all of those with undiagnosed genetics suffering from Hyperinsulinism. I think she wants this as much as we do. One bonus is that Baylor College of Medicine is one of two sequencing cores, meaning there are no travel expenses for us to participate in the program. Please pray that Jackson’s case gets approved. It may not change his prognosis but it could lead to great advancements in the Hyperinsulinism world. We really want this.
From a fellow blogger and friend, Dani.
I love quotes. There are so many really good, meaningful quotes about the importance of community. “It takes a village to raise a child.” “We rise by lifting others.””Alone we can do so little; together we can do so much.” “Your vibe attracts your tribe.” Community is not just important, but valuable to the human experience. If I believe one thing only about people, it is that we are powerful when we come together for a common cause. You can see it in volunteerism, in disaster recovery… or in my case, in making life a little easier for a mama with her baby in the hospital.
I’m a part of this amazing community. Most of us have never met each other. We have every spectrum of income, education, politics, and religion. Just about every style of parenting, relationship, career and lifestyle can be found in our group. We are all…
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