Monday, September 22, 2014

What is a Special Needs Mama?

I'll never forget the day it happened.

Well, the actual date escapes me, but I know it was in 2013.

I was at a dear friend's house, trying (unsuccessfully) to hold back tears.

My friend Felicia knew I was going through a rough time, and had just asked me, "have you grieved yet?"

I had no answer, because I had no real idea what she was talking about. "Grieved?" I asked her.

"Yes", she replied, "you know, grieved for Logan not having a normal childhood? For the life you thought he would and should have?"

Let me back up a little first: Felicia has a precious little boy with autism. She has been through it all. She has experienced pain, heartbreak, and joy in her journey. And she recognizes how incredibly HARD it is to have a child with special needs.

Before that day, I never considered my Logan to have special needs. He doesn't have any specific diagnosis for any disorder, just FPIES.

What is FPIES? Well, I won't go into it too deep here - just know that he can't eat anything processed, EVER. Which may not seem like a big deal. He only has about 25 safe foods, including oils and special baking items. He has NO safe milk, other than goat milk. Protein in most forms is deadly to him, as are foods that are high in fiber.

To put it simply, he cannot eat a single thing I haven't baked or prepared in advance for him. Ever.

That day, Felicia explained to me how incredibly important it is to realize that not only does Logan have special needs, but that I'm also a special needs Mama.

I ended up crying quite a bit that day. Felicia, as she always has been, was very reassuring, and knew just what to say. I was at my wit's end.

My house was always a mess. My lawn was never mowed. Laundry was piled up. There were never any new decorations to put up. The dog always needed a bath. I was exhausted and had nothing left.

But she reassured me that day. I remember talking with her, explaining how many hours I was in the kitchen every single day, making his food from scratch just so my boy could eat.

I remember telling her he might never go out for ice cream with his friends, or even play at a park near an ice cream shop. We talked about the fact that we don't go to restaurants or parties, ever. I told her how we very rarely go to local events, because of the food. Vacations of any sort involve days of preparation, planning, and a cooler the size of our vehicle. And a whole lot of mini heart attacks.

I remember her telling me that I truly was a special needs Mama. She explained that just because Logan didn't have a specific syndrome or physical handicap, didn't mean that he wasn't special needs. She validated my concerns. She gave me a voice that day.

And I am forever grateful to her for that.

Being a mom is HARD. Being a special needs mom is IMPOSSIBLE. If you know what I mean, then you qualify too.

I have been there when Logan has had a trigger food two days prior and he is so angry, hurting, and frustrated that he is trying to slam his head off the floor in anger. I have tried to talk him down when he kicks or hits out of frustration and pain (he otherwise NEVER does this). I have held him all night as he screams and flails in excruciating pain, after having just a BITE of a new food we wanted to try. I have held him tightly in Emergency Rooms, when he is unable to move because of stomach pain and severe constipation.

I have begged God, prayed that He would take Logan's pain, and give it to me. I have experienced the all-too familiar feeling of my heart sinking at his first hiccup after a food fail, knowing it would be days (if not weeks) of misery and pain all-around.

I have pleaded with doctors to help my boy, and in turn have been told that they weren't worried.

I have heard well-meaning friends and family ask me what he CAN eat and stare at me in ignorance when I explain his condition. I have had some of the people closest to me question whether he is just hungry, and I've been told to "give him more meat!" as a solution.

This post isn't meant to rant, although it IS therapeutic, I must admit.

It's to encourage. It's to tell you that if you have a child with FPIES or some other form of food allergy; if you have to alter your entire life around a need that your child has, then you are a special needs parent.

The laundry and dishes can wait. The decorating can be done later. Who cares about the lawn or whether you have stained siding on your house?

Your child needs you. My child needs me.

Forget what everyone else thinks.

Forget about visitors that come to your house and stare openly at the mess or the overgrown lawn.

Forget about other people's ignorant opinions about your child's diet.

We are our children's #1 advocate. We stand for them. We fight for them. We cook specialty food for them, and take better care of them than anyone can.

Everything else can wait.

I encourage you to find your own supportive friend. If you don't know one, message me or add me on facebook. My heart goes out to you, Mom: you are my hero!

PS - yes, my house is still in chaos, my lawn is currently not mowed, and the dog still needs a bath. But my boy is currently eating a homemade doughnut and smiling at me, so I guess I can deal ;)


  1. Awe Amanda thank you for sharing this I love it and so understand! :) Amee

    1. Amee, thank you so much! You know how bittersweet it can be writing your thoughts out!

  2. Amanda, I can't say that I know what you are going through because I don't. But if there ever comes a time when you need help with giving the dog a bath, cleaning a toilet or mowing your lawn, then i can say I have been there and I am more than willing to help. Love you!