The Ache of Advocacy

I often say that the moment the second line came into focus on the pregnancy test I became a mother. What I didn’t know at the time was I also became an advocate.

The role of mother was obvious, and taken upon (somewhat) gracefully.  Whether it was staying away from lunch meat while preggo to changing diapers and losing sleep with little complaint, pureeing baby food to worrying myself sick about everything. Motherhood happened naturally, even without the instruction manual that I begged for when they led us out the hospital doors. I still don’t think I’m doing it right, but I figure if she’s alive and smiling and bathed occasionally… I’m doing alright. 🙂

Advocacy however… That was a role thrust upon me with such force I feel like I’m still flying backwards.

It began the day I was admitted with hypertension as E danced in my womb. We were told that E would be early, that we needed to prepare. And so I did. I Googled (oh, Google), I asked for books on the NICU, had nurses and doctors visit to explain in detail all that would go on. I even had the woman from the Birthing Center come and give us our ” hospital birthing class” that we had missed since being admitted, even though we all knew she was going to come via c-section. I researched. I educated myself. It was only the beginning.

My advocate’s voice is one that I haven’t found easily.

It started as a whisper in the NICU when the doctor looked at me when E was critically ill and said, “What do you think, Mom?” and I thought, “Me? What do I know?????” But he was genuinely wanting my opinion, my insight on my daughter. I told him what I thought, and he heard me… even at a whisper.

My voice grew a bit stronger on the phone talking to the receptionist at the therapy clinic… I was asking for my daughter to be seen by any and all therapists… At 3 months old… when even “typical” babies aren’t doing much. 🙂 I became quite efficient at asking, “Why are you doing that? Tell us why. Teach us how.”  to the therapists and doctors that treated E

As the months grew on, my voice strengthened. I pushed and pushed and pushed for diagnostic care for E when her development lagged and lagged behind with no obvious answer.

And then we found the answers we wanted.

I now knew, from the immensely helpful online group and Foundation, which tests to ask for, what therapies to focus on, what doctors to see… I kind of… almost… maybe knew what to do. Having research and support was a game changer in my advocacy. I am now not alone in my fight. I’m still fighting, to be sure… but now with more direction.

But… it doesn’t make it hurt any less.

My advocacy for E has led to a lot of uncomfortable, undesirable situations for her. Pokes, prods, anesthesia. Days spent in therapy, hours spent in specialists offices. All things that were necessary and ultimately for her good… but as a Mama this goes against everything my heart wants for her. Even though I am the one fighting, she is the one taking the hits. I want to keep away any pain, any bad thing… Every poke, every prod is one into my heart.

Recently, we received the recommendation for E to receive 40 hours a week of ABA therapy.

Forty hours… a full time job for a two and a half year old.

The 2.5 year old who already hasn’t had a “typical” life… who is more comfortable playing in patient rooms than she is with her peers. The girl who screams when she sees someone wearing latex gloves because that normally means pain for her.  She will now have intensive therapy all day, every day of the work week.

This aches more than I can say.

She absolutely needs this therapy. She needs me to advocate her. My head knows this, but my heart just wants to stop everything and just eat pancakes in our pajamas all day every day.

But my heart also loves this girl more than I ever thought possible. My heart and my voice have fought for every good I can for her.

I can bear this ache of advocacy because she is thriving and growing and FLOURISHING because of it.  May my aches be dulled by her smile, and may her aches be dulled by mine.




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