This year, like the past few years, Mother’s Day and National Apraxia Awareness Day are about a week apart. Unlike in previous years though, this really struck a cord with me recently. First and foremost, I am a mother. I have had the joy of giving birth to four beautiful babies. Each of their stories and personalities are different. They each bring me immense joy and they each cause unique pain to my heart in their own different struggles.
For those of you that don’t know. One of my kiddos brought home some new challenges to our family when he was about 2 1/2 years old. At that time, he was diagnosed with childhood apraxia of speech. This is a rare speech disorder where he was understanding everything that was said but couldn’t get his brain and his mouth to work together smoothly to get anything out.
Even though I am an occupational therapist, I found myself learning all over again how to be a mother. I began navigating the waters I thought I knew so well with different intentions and from a different perspective. I entered, officially, the world of “special needs moms.” Like always, I was a quiet observer for a long time as I accepted this new role. It seemed like a wholly different place. I could totally understand the emotions and frustrations, the joys and the tiny victories that all of these moms enjoyed. It felt like home… kind of…
Somehow, between the lines, an “us/them” mentality existed. The camaraderie came in sort of weird ways sometimes… banding together against the world… since it often felt like the world was against us. As I sat back and read Facebook posts from all sorts of different moms, I realized… the words that “we” said are the same words that “they” said… and vice versa…
“They just don’t understand.” “You have no idea what this lady said to me in the supermarket.” Followed by “Totally! People are stupid, ignorant, jerks…”
“How can they talk about everything their child does?” Followed by… “Those people are so annoying.” “No need to hang around those people.”
“We always have to fight to get what we want.” Followed by… “Teachers are terrible.” “Doctors are terrible.” “The School Board is terrible.” “Therapists are terrible…”
“I have to speak for my child.” Followed by… “You go Mom!”
The words from moms are simply the words from moms. “We, “They” changes based on where you are standing at the time of the conversation. These things are said about people from different perspectives all the time! I am sure that what I am about to say will offend some people but it’s what I believe in my heart… as a mom. As just a plain old mom. That’s who all of us “Moms” are. So, as you read on… realize that in this conversation you are both a “we” and a “they.” What I want to do from here on out is simply move this conversation towards “us.” “Us” as moms…
Truth be told. I can’t be any of my childrens’ voices. I need to empower them to have their own… whether it’s vocal voice, communication device, sign or action. I will not always be there for any of my children. I simply won’t. That is just a fact. I can’t personally get over my child’s immense shyness and the bullying that comes with it. I can’t personally get over the lack of filter on what comes out of my child’s mouth and the trouble that comes with it. I can’t physically smooth the pathway between my son’s mouth and brain. I can’t stand on stage and sing for my daughter when stage fright and the butterflies kick in. I will tell you, this mom’s heart does not differentiate between any of those struggles. It hurts all the same.
I am tired of the word “fight.” Fight is a stressful word. It brings negative emotion and connotation with it. Instead, let’s have a discussion. Let’s compromise. Let’s share perspectives until we agree. Let’s sometimes agree to disagree. Don’t those sound less stressful than fight? I don’t want to fight about class placement… for advanced placement or for special education placement. I don’t want to fight about political school agenda or teacher preference or deference or ignorance. I don’t want to fight with the counselor about who was right or wrong in bullying… either for the way my child dresses or for the way my child speaks. I don’t want to fight with insurance about pre-authorization or pre-exsisting conditions for a orthopedic surgery or an ambulance ride or for speech therapy. I don’t fight. I discuss and discuss and discuss.
Let’s all understand that at one point we absolutely did not understand. We forget what it was like before we gained our unique motherhood experiences. We didn’t understand sleepless nights or the pains of childbirth. We didn’t know the joy of feeling a child move within us and the pains in our hearts that we would have once they were outside of us. We didn’t understand total dependence or the struggles with budding independence. We didn’t understand that we have to let go in order to let our children fly. We didn’t know what it was like to lose a child… or to never embrace the one we didn’t get to meet but hoped and prayed so desperately for…
In reality, the problems and burdens we face change, I believe, as we change and as our children change. Just as one time we believed the world would end if our child did not, for once, seriously, just sleep through the night… and now we wait up at night… waiting for our teenager to be responsible and return safely home.
I know that before I became a mom I was sympathetic and not empathetic. I know my adult-child relationships were different. I know it took me a long time to understand the ins and outs of apraxia and Autism and Cerebral Palsy and Down Syndrome. I am still learning, even after 20 years “in the business of disability.” Why? Because each and every child is different. Each and every mom is different. Because each and every family that brings forth a child with one of these diagnoses is different and each and every one of the people I know with these diagnoses are different. Why? Because they all have their own personal strengths that make them the awesome people that they are. We were all here… we are all here… still learning.
Let’s not compare. The pains my children have are no greater or less than the pains your children have. My children are no more or less precious than your children. My pride and sharing of it does not belittle the accomplishments of your child… no matter how big or small. We are all in different places along our motherhood journey. My path may be filled with hills and valleys whereas your path may be filled with timbered trees and rocks. My lack of understanding of your situation could equally apply to your lack of understanding of my situation. My burdens and challenges are something I alone am meant to shoulder, based on my knowledge, life experience and situation. I may still need to grow in order to stand up again, but they are totally different from the burden that you shoulder. I can only ever sympathize and can never truly walk in your shoes. How about I applaud your children and you applaud mine?
Any time I see a post about… “I wish that was what I had to worry about…” I am reminded of this story shared one week at church…
One man complained that his life is too hard for him. He came to God, told him about his troubles, and asked:
– Can I choose another cross for myself?
God looked at him smiling, took him to the store of crosses and said:
A man came into the store, looked around, and was surprised: There were such a great variety of crosses – little, big, medium, heavy and light.
The man walked around the store for a long time looking for the littlest and lightest cross, trying to carry different ones at different times. Some were too long, some were too short… some too heavy… some too light. None felt right. Finally the man found one he liked and felt comfortable and then came to God and asked:
– May I take this one?
– Yes, you may. – answered God. – It is your own cross.
One more thing. There are stupid, ignorant jerks everywhere. You will find them wearing all sorts of different clothing and having many different skin tones and they can be either gender. They are equally tall and short, heavy and skinny. They can be really any age. They comment on your children’s behavior or your behavior. They give you rude looks. They give your children rude looks. Do you know what my mom always taught me about those people?
“You never know what they are going through at home.” And once again… my mom was right. I just am happy that I am not as grumpy as them… well… okay, sometimes I am…
I recently shared some advice with a new mom in a support group for parents of kiddos with apraxia of speech. As I re-read it, it proved to be good advice for all moms. So here it is…
My best advice would be breathe. This journey is a marathon, not a sprint. And let me tell you, this sucker is a mudder, so you will need to pace yourself, care for yourself, realize sometimes you will be ahead, sometimes you will be behind. Sometimes you will feel great, other times you will feel your heart pounding out of your chest. You will want to stop. You will want to quit… but you will hit your stride… and so will your child. Your stride will NOT be the same as everyone else’s so find what works for you guys and what will get you ahead slowly and steadily. I am not sure when we will get to the finish line, but at least it feels like its in sight, so don’t look at it constantly. Instead, enjoy the scenery right where you are at this moment.
So this year as I head into Apraxia Awareness Day, I am headed into it as a mom and I am inviting all other moms to join me. Why would you want to? Simply to gain some perspective on what another mom might be going through. We are all just moms in our hearts. Let’s band together and support each other that way, in the store, in school, on the playground as “us”… Okay?
Thanks for stopping by!