What to tell our children about NMO?

Despite this blog, I’m a very private person. I go about my day without anyone really knowing the pain I’m in. I rarely (closer to never) complain and most of my family and friends forget that I suffer from Neuromyelitis Optica (NMO). But truthfully, some days aren’t good. On my “bad days” I tend to go into hiding, I work from home, I sadly cancel on social outings. I’m okay with that now. My husband is the closest who gets it (as best as any non-patient could), watching me in quiet agony sometimes and I’m sure overhearing my private pep talks to push through the day. And now my daughter is also privy to my suffering.

So how much do I tell her?

My daughter is 2 and a half now. As a mother I’ll do anything to protect her from the realities of this world. I don’t want her to know pain, sadness, disappointment for as long as I can. She’s growing up so fast and I’m often disgusted how quickly our world wants our children to mature. Don’t get me wrong – I don’t want to raise an ignorant, immature brat, but I do want her to enjoy being a princess, blowing bubbles in her milk and laughing at funny faces we make because she (and every child) deserves that.

On my bad days she’s seen me struggle a little bit. On those days I know a look she has on her face, that is a mix of understanding I’m not my usual energetic self with a lot of worry that something isn’t just right. It’s that look that breaks my heart. It makes me worry about that inevitable day, the one when another major attack happens, because it will, and we’ll have to figure out a way to explain it. I’m not pessimistic but a realist who thinks we should be as best prepared as we can be.

I don’t know if this is the right answer (like all parenting conundrums) but when she’s old enough or when I’m forced to find a way to explain it, I will tell her my harsh reality. And that’s ok because I want her to understand that sometimes bad things happen to good people and strong people can have weaknesses. What I have resolved so far is this – NMO will be my battle, not hers. I hope for a cure one day but if things become more challenging as we both age I’ll want her to go and live her life¬† and not become my caregiver. I hope I raise her well that she’ll want to be but of course, I won’t let her. I know I’ll potentially get some grief about this; there are a lot of families that believe one should take care of their elderly, and yes, there’s a certain sweetness and sense of responsibility I respect about that value. But I hope for my daughter to be braver than me, stronger, smarter, healthier than me and I want her to take that and be impactful to our world, not just impactful to me.¬†

Dec 2014

Family, NMO, Uncategorized


One Comment

  1. So Jenna, I read this as a mother of a grown son, who was 17 when I finally had a name (the wrong one it turns out) to call this thing I’d been living with since i was 12.

    I grew up with family and close friends who lived with various disabilities, both visible and invisible. From my perspective, I am grateful for it because it has shaped who I am and I learned from a very young age to NOT see disability as a minus. I learned about resilience, compassion, courage, strength, perspective, advocacy, accessibility and unconditional love. The people in my life were always honest about their challenges and it allowed me to see that everyone has something they struggle with and how they handled it became a blue print for me in dealing with my own medical challenges. Their actions always spoke so much louder than words.

    Kids watch EVERYTHING. They are smart-alot smarter than we give them credit for. Sophie may be small, but on some level she’s already begun processing what NMO means to your life even if she is too young to verbalize it. She will understand it on whatever level she is able. I really understand your desire to not have her become your caretaker-no one wants that for their child. We want them to grow up and go off to chase their dreams. If that’s important to you, I know you will make sure that happens.

    It’s tough that as parents with rare disease we don’t get a manual on how to deal with this stuff. All we can do is move forward, doing the best we can and deal with things as they come up. My son has come with me on occasion to hang out while I have a steroid infusion. We talk, we laugh and we get through it together. There’s a closeness between us that I wouldn’t trade for anything. I think it’s been good for him to have a glimpse for time to time into my world-I think it helps him see I am coping and fighting and that makes it a little less scary for him.

    Being the parent of an only child, the dynamic is different than between parents and kids where there are multiple children. It’s always been the three of us as a united front. We’ve also always been able to talk about anything-and we’ve always been open and honest about the hard stuff. It got all of us through my husband’s kidney cancer 2 years ago and it’s getting us through my life with NMO. My son is 23 now, has a great job, lives with his girlfriend (who will undoubtedly eventually become our daughter-in-law) and he is happy and well adjusted. He has his own life, but we remain close.

    Sophie will be amazing. How could she not be? She has a fierce, amazing mother. As she grows into the woman she will be, you will continue to grow as her mother. She doesn’t need you to be perfect, she just needs you to be you.

    Comment by Lelainia Lloyd on December 16, 2014 at 7:44 pm

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