#Ichthyosisawareness month is almost over and I didn’t do all the posts that I had plan. But I think this is where I want to end my thoughts for this month regarding a genetic skin condition that blindsided us and hurled our whole family far away from where we thought we should be.
I’m starting to learn that I was letting the fear from other families with ichthyosis cloud my own intuition and judgement. I feel like I’m finally coming out of the fog and realizing that Olivia is not nearly as fragile as I was made to believe. Even though our dermatology team told me from early on that she would be able to do pretty much anything a typical kid could, I had a hard time wrapping my head around it. But it’s true. It’s just on her own timeline. Even though we make take a few extra precautions, it does not have to be as scary and extreme as I was made to believe. But of course, I can say this now. And as in now, I mean this week. Or even today.
You know that feeling when you are recovering from an illness and that taste of feeling refreshed makes you realize how awful you felt before? I can relate to this most when a hangover finally wears off 😬 or when I was in denial I had mastitis and I finally took the antibiotics and felt like a human again. Well, for me this goes for my mental health, too. More and more research and studies are coming out linking Post Traumatic Stress Disorder (PTSD) to parents that have experienced a health crisis with a child. And that was the validity I needed that this life with ichthyosis isn’t just “hard.” There has been severe trauma that we are forced to look at face to face and catches us by surprise. An example of this is watching a sci-fi show in which there is a scene where a baby is born with a severe visual defect and is killed immediately upon birth. It took our breath away and caused a river of tears. We paused the show momentarily, only to return to finish it and go on with life. At least we have one another, yes, but it’s hard to help people heal when you still have a lot of healing work that you need to do.
Just this week I’m realizing how depressed I was and what a dark place I was in the last few months. It’s easier for me to run full speed ahead when I can’t figure out what to “fix.” This time around, every little task made me feel like this hole I was in was magically getting deeper and hopelessness was starting to creep in. For anyone who has experienced depression like this, you might be like me and can rationalize the heck out of it, but drive yourself crazy that you still don’t feel right. I don’t know what snapped me out of it this time. I know it wasn’t just one thing. Being on vacation for a week with the family and seeing my mom, sister, and aunts definitely helped. I also have been running again, I was able to receive funding for respite care, and I set up spiritual direction with a priest I really look up to. But reading Shannon Evan’s book Embracing Weakness: The Unlikely Secret to Changing the World gave me the little push that I needed to see a way out. I highly recommend spending the $11 to read it! Since coming back from vacation, I don’t feel like I’m under an avalanche of housework and medical appointments even though none of that has decreased. It just feels manageable.
And that’s how I know I wasn’t okay. Now I see that I was trying to shove my weaknesses and my hurt and my trauma under the rug. I hoped that if I just kept doing everything I needed to do, this would eventually pass. What I really needed was to validate that this hard stuff that I felt was leading me to be a person I never wanted to be, could be places of growth that would help me be more empathetic, more patient, and more loving towards others. Because surely I’m not the only one who feels this way and maybe by sharing this, someone else can start to see that they aren’t the only one who feels this way either. And just like I take extra precautions to protect Olivia and keep her safe, I can take some extra precautions with myself, too. And in the end, my mental health isn’t just about me feeling better. It’s about me being in a better and stronger position to shower my husband and kids and friends and family with the love and support they need right where they are.