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When You Wonder If It's OK to Let Yourself Mourn as a 'Medical Mama'


Over the last two years, I’ve woken up every single day with a positive attitude, ready to take on every challenge, every disappointment, and celebrate every win.

I wake up at 4 a.m. and begin my day and as I listen to the sounds of a BiPAP ventilator in my daughter’s room, I plan out everything I need to accomplish for the day. There’s work, doctor and therapist appointments, phone calls (medical supplies, insurance issues, scheduling and rescheduling appointments), scrolling through support sites on Facebook to see if there is anything new in the rare disease community that will help my daughter, paying bills, laundry and then dinner.

The list could go on forever.

All of this is being planned while my two kids sleep, and I pray my daughter’s machines don’t go off and that when she does wake up, it’s a good day for her.  At 7 a.m. the kids wake up and the day begins.

Will it go as planned? No, never.

Still, I always put my happy face on and roll with the punches.

I’ve taken to the idea that no matter what life throws my way, I have no choice but to remain positive. I’ve done a really good job with it, but recently I had a number of events that happened over the course a week that seemed to hit me hard. It was like there was no time to dust myself off and push forward.

I always tell myself just breathe. But this time it just felt like the hits kept coming. Every time I’d try to breathe, I’d have the wind knocked back out of me.

What if I just took some time to mourn these losses? What if I let myself just feel bad for a day? What if that’s just what I need?

I once again tried to talk myself out of that and pushed on. Then I received even more terrible news. I told her doctor that although we may have had what seemed to be a major setback, we had to believe everything happens for a reason and continue to push forward.

Although this time when saying it, I felt an extreme need to sit with that pain for a while and not actually pick myself up.

I found myself fighting to hold back tears, because the low I feel is so low, that I fear if I give in, I will never come back.  

I hold back. The day is so busy, there is no time for tears. Once again I bury that low and try to find a high, the one thing that can wipe away those tears is the smile on my daughter’s face. I get my kiss and hug, dust myself off and move on.

The question I’m still asking myself is, is it OK to give in to that low — even if for a short while — or will that lead me down a path I can’t come back from?

I know I must remain positive and strong to keep this fight going.

Am I still the strong mama everyone looks to and respects if I allow myself to feel that pain?

Will giving in to the sadness change the course of this fight? Will it slow us down?

I don’t know, and I’m not sure I want to find out so for now, so I’ll take a moment to just breathe.