Family member, Husband, and Friends,
I'm writing this letter because my words seem to fall on ears that do not want to hear.
You see, I am a mother, warrior, angel, advocate, provider, and protector.
I love to talk about my children not unlike every other parent. However sometimes I need to talk about things that make you uncomfortable, for example, my sons disabilities and the multitude of things that come along with those disabilities.
And sometimes I need to talk and release the fearful and upsetting parts of being a special needs parent. That does not make me a failure, a pessimist, negative, depressed, or lacking of faith. That makes me human. I wish so badly you would understand this and just be a shoulder to cry on, whether literally or metaphorically every once in a while.
I wish you could understand how hard I fight every day to ensure my sons future be filled with endless possibilities. I wake every morning with hope and lay my head down every night, tired. Physically, emotionally, tired. I set the timer on my coffee pot for the next morning to do it all over again. Every day. Therapies. Appointments. Schedules. Wash. Rinse. Repeat.
I field your questions. The "when's", "why's", "will he", "can't he's", and "why can't he's".
The answer is, I don't know. I don't. I'm fighting to find the reasons. I'm explaining to him the reasons I have to hold him down for needle prods and listening to his screams. I'm HIS worst nightmare in those moments. I'm HIS hurt. There is still no answer. Hopefully soon-ish. All I have are the "what if's" of an unknown diagnosis.
I carry my tall, lanky, 2.5 year old everywhere because he can't walk, or crawl, or talk. I'm reveling and delighting in his achievements with him, no matter how miniscule or far behind the other children. He is the brightest child I have ever met. He is my world. He is my Joy. He is beyond the best. He is mine and I am his. We are learning sign language to communicate in his non-verbal world. To be a part of it, instead of trying to discern his whines and noises and becoming frustrated. He is learning how to eat independently with adaptive utensils and scoop bowls. Every meal results in a mess and ultimately tears because after he is physically too tired he needs help to lift his spoon. just. one. more. time..... And I see it in his eyes, "Mommy, why can't I do this?".
It's hard to try to explain to him why his sister's shrieks, and music hurt his ears to the point he cries. And why his noise cancelling headphones need to be worn so his ears 'will feel better'.
It's heartbreaking. Most days are. Why can't things be easier for him?
Sometimes our days are so long.
Sometimes I can't sleep because I just want to lay with him and hold him.
I am scared. Sometimes. Of life for him in the future.
And sometimes I need you to remove your rose colored glasses and let me finish my sentence without another interruption.
I need you to not offer me your advice. Not tell me I "can't think that way". Not inform me that God gave me the ability to care perfectly for my child. Not tell me to be optimistic. Not tell me I am being negative. And please think before telling me you can't hear what I have to share with you because you "just can't deal with hearing something like that".
In the politest way I can possibly say this, I need you to please just shut up.
When I speak, it is me, waving my white flag. When I share that I am tired,I am letting you into the very depth of my weakness and strength. I am laying down my shield and taking a moment to bow down. I need help. I need, if even for only five uninterrupted minutes to allow myself to take a break, to feel the fear. To cope. To release. To put it all into words and get them out of my body. To breathe a sigh of genuine love filled exhaustion that only a mother knows. To admit I am human. To have the hope that someone, somewhere, understands.
That someone, somewhere, understands that we, as special needs mothers, need to speak about the things that are endured. The things that damn near break us. The things that no one is comfortable hearing us say....
So please, let us speak.