To My Coworkers on the Days I Seem ‘Needy’ as a Special Needs Parent


Some life lessons can be more difficult to understand than others.

Life’s balance, as I know it, has completely shifted over the past six months. The independent, dependable person I once was seems to be a distant memory — replaced, instead, by what often feels like a scattered shell of my former self. The woman who never turned down a request for help has become someone who feels like she’s constantly asking for the graces of others. Simply stated, the giver has become the taker, and it’s terrifying.

I am fairly new to the community of special needs parenting. Six months ago, the only “special need” I had was to leave work for a few hours when my son fell off his new bike and broke his nose. My reality now is stretching FMLA leave to cover my daughter Piper’s visits to the developmental pediatrician, the pediatric neurologist and multiple weekly therapy sessions, just for starters.

Presently, I find myself overwhelmed and anxious over the mere thought of what my daughter’s care may mean for my personal and professional life. There’s a lesson in here somewhere, and I feel like the only way to find it is to reach out and ask those in my professional life to consider me, the person hidden behind all of the requests.

I ask you, please, to understand how scary all of this is. We’ve only known each other a little over a year, and that makes all of this so much harder! You barely got a chance to know me professionally before my life became more demanding, so I’ll explain the best way I know how. I was you. I was ever-present, driven and reliable. I was the person who filled in without question when “life happened” to someone on my team. With the exception of needing regular time off to coordinate my daughter’s care, I am still those things.

Because of my needs, I feel like my performance might frequently be overshadowed by my need for accommodation. I give all I have each day I work beside you, yet my sense of personal responsibility causes me to feel like a liability. Unless you have walked this path, you may not be able to understand how heart-wrenching that feeling is.

I want you to know, also, that I see you. Honestly speaking, that is what makes this reality hardest of all. I see how it affects you when I leave you short-handed. Not only do I see you, I care about you. I am mature enough to realize you don’t harbor resentment towards me personally. Still, I internalize your frustration in this situation, and I feel tremendous guilt over the fact that my needs regularly come at your expense. If I didn’t value you as much as I do, this wouldn’t be so hard.

I ask you to understand that besides being a special needs parent, I’m human, just like you. There will be times when I will be sick, need surgery or lose a loved one. Like you, I will need occasional time off to take care of my own needs. Please fight the immediate instinct to be annoyed by this, due to the fact that I already ask for so much. I never wanted to be needy. I wouldn’t change a thing about my daughter, but the gravity of the situation regularly sits heavily on my shoulders.

Lastly, I wish for you to understand how much I appreciate your continued support. No one but me is responsible for the feelings I’ve expressed. Life hasn’t been easy as of late, and though I may seem like an open book, what I share with you often doesn’t scratch the surface. Collectively, you seem to accept that, and continue to embrace me, even with all of my extra needs.

image
Angela.

Follow this journey on drivingthestrugglebus.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Other

Reclaiming What It Means to Feel Beautiful as a Medically Complex Teen

I felt like I was hiding all the time. Your self image wears thin when you’re under the impression that you have to spare the world from the reality of your existence. It wasn’t what I wanted, so I just decided to stop believing who I am is something to be ashamed of. I’m pretty [...]

What I Wish I Could Tell My 13-Year-Old Self in the Operating Room

Dear 13-Year-Old Self, You’re not alone. I know you feel that way because no one is telling you anything or explaining anything to you. I want you to know I understand. I understand because I was there many times before. I was you. I see you, sweet girl. I see your body shaking with fear. [...]

When I Learned to Love the Detour My Life Took After My Illness

I took my own story to Boston College in February to show students that a detour is not a dead end. Somehow I’ve managed to cram more surgeries than I can count into a one-woman autobiographical musical, a presentation on mental health, and a takeaway that difficulties can truly make you stronger. Ten years of uncertainty and setbacks [...]

If You're Struggling, Remember: Adulting’s Not Always Easy, Humaning Can Be Hard.

As a psychotherapist I want to go on record by saying that life can feel hard. Really hard sometimes. The daily stuff of our own individual lives — the Adulting and Humaning we’re all called upon to do each and every waking day — isn’t always fun, glamorous or easy. Not at all. I say this not to [...]