As mothers, we are the first responders of childhood. When a child has a scratch, we fix it with a bandaid and a kiss. When their feelings are hurt, we fix it with a hug and some encouraging words. And we get to be pretty good at “fixing” things.
So good that sometimes it’s hard to learn to accept things as they are instead of fixing them. Being a third time mom, and getting my “fixing” down to a T, it was a hard lesson for me to learn to accept something as is.
My first two boys were born pretty healthy. And it’s not until you have a child that is not completely healthy, that you really learn to be thankful for healthy babies. Or at least that was the case for me.
My third baby has a skin condition called urticaria pigmentosa. It’s not very common, only about 1 in 10 million babies will acquire it. What it boils down to is that there are too many mast cells present in the skin, which makes it look like little brown spots on his skin.
And while this condition in adults is really grim, most children will grow out of it with no long term effects.
But not all. Which is the scary part. The future can really look like anything for us. It could be completely “normal” or be full of allergic (even anaphylactic) reactions, painful lesions and learning disabilities, etc. And no one really knows what causes it or how to “fix” it.
Hence my lesson in acceptance. It took me about 6 months post diagnosis to really move past the uncertainty. I didn’t like uncertainty – I wanted to “fix” it and move past it to my normal life I had imagined.
I would be changing his diaper, and the spots would be staring me in the face. Here was my happy baby, cooing and laughing at me. Meanwhile, I was holding back tears, staring at his spots, knowing they could mean terrible things ahead.
This literally happened multiple times a day (with every diaper change) or whenever I changed his clothes or gave him a bath. And it went on for months.
I tried my best to “fix” it with my normal repertoire of natural remedies – essential oils (diluted of course), coconut oil, probiotics. And while I’m sure all of those remedies were beneficial for him, none of them touched his spots in any meaningful or lasting way.
I was getting really depressed and exasperated and I felt helpless to help my baby. To erase his spots and to make him “normal” again. I wanted him to have a normal childhood, one where he wouldn’t have to deal with allergic reactions or itchy spots.
I’m sure every parent of a child with any kind of diagnosis has these feelings. We all just want the best for our children, including a childhood as free from pain or discomfort as possible.
I finally realized that I was surrendering the joy I could be experiencing in the present moment for the anxiety of the future. This uncertainty I absolutely had no control over!
I could take him to the best doctors in the state for opinions (and I did) but no one knew how this would turn out for us.
I decided to just take it one day at a time and try to enjoy my baby. To be here with him in the present instead of mourning the future which might not even be as grim as I imagined it.
With each diaper change, I tried to just focus on him and his smiles. Every time I would start to get upset or depressed, I would turn my attention to connecting with him instead.
It took some time, but after a few months, the spots didn’t bother me anymore. I didn’t see them as a death sentence anymore, and instead tried to focus on the positive outward signs. My baby was as healthy as he could be otherwise, gaining weight and thriving.
We had no signs of allergic reactions (knock on wood) despite beginning solids. I also had a list of other symptoms to look out for and thankfully, we were not seeing much of them either. I tried to focus hard on these REAL positive facts instead of focusing on the POSSIBLE negative events of the future.
It was a difficult process for me to accept his condition as is. It took me a while to realize that in accepting it, I wasn’t giving up on finding a solution. It only meant that I would love him AND his spots.
I’m still researching (always researching!) possible interventions for this condition, such as heavy metals testing. But it no longer rules my life to have to “fix” his condition.
We just take it one happy day at a time.