If you’ve consistently read my blog since inception, you know I’ve got a global village of families that get it. They are my John Tracy Clinic family. [If you are a newly diagnosed family who have children with hearing loss, please take advantage of their resources.]
We keep in touch via Facebook, individually and as a private group I created so we can continue to “stay close” and not feel so isolated in our day to day journey with our kids.
Today, my wonderful fellow JTC Mom posted something so relatable to me, to us as special needs parents that resonated with me. And her post started with the title above.
Yes, we go through things other parents don’t necessarily think about. Our day to day often times are automatic and require no brain power in what our expectations are other than doing our usual routine. But for us parents, that literally think of the little things, the little accomplishments or little struggles like holding a pencil, walking, speaking, as most of that often times occur organically, we are expected to burden the weight of it all and are expected to carry it – much like a camel. A camel that doesn’t carry water, but can go a long period of time without water, carries the fat to survive hot climates.
We are often times in these ‘hot climates’ when everyone around us are in a happy, spring-like non humid spring day. [or insert your picture perfect weather day here]. And the times we have these days, the remainder of the world gets, we often times do not know what to do on these perfect weather days. Because that’s when life usually brings you back to reality. (am I the only one that is super grateful for days like this but feel crazy because we are waiting for the other shoe to drop?).
We go through the motions of life, our expectations, never ending errands to ensure our family’s wheel keeps spinning accordingly. This doesn’t account for the me time, I still don’t do but promised to in January. 🤦🏻♀️ (but I will count this as some self reflecting/mindful practice). The regular, mundane, everyday, ‘normal things’ everyone gripes about are and can be overwhelming for any family. But my camel hump, carries the fat that can potentially cripple another. Yet, we are expected to walk this Earth and not be human about the things we deal with. Despite how far my son has come from what the ‘medical professionals’ said:
“We expected him to be further along than where he is a post cochlear implantation…”,
“It is good we are continuing his sign language because there’s a significant delay in his speech still.”,
“We believe there may be some neurological issues that should be addressed,”
“We believe and with your permission, would like to refer him to be assessed for autism,”
“Tests results indicate, sensory issues coupled with….,”
“…comobidness or his autism and ADHD and how they can mirror each other…”
Let’s discuss what teacher professionals say:
“He struggles with…..”,(this times 10!)
“We don’t see behaviors….(But we do!),
The list goes on…. and when you think you’ve heard it all, there’s more professionals saying more things using a gentle, soft tone in their voice. It doesn’t make the words that come out of their mouths any less piercing when it hits our hearts.
We carry A LOT! We have daily things we think about that a typical parent probably wouldn’t think twice about. That’s a blessing for them. But it isn’t a curse for us special needs moms. I have to think multiple times : for myself, for him, for his disabilities x [insert # here]. It isn’t easy but in all the jobs/ roles I ever played in my life, this by far is the most grueling, stressful, busy, anxiety-inducing, financially , taxing exciting, loving, awe-inspiring, extremely rewarding and purposeful in my life. No I don’t get 6 figures nor live a glamorous life that you see on social networks: with the vacations, fancy new cars, etc. There’s no glamour here! But my reward surpasses anything material in this world. I get to actively be a part, learn about my son daily, learn about all his puzzle pieces & advocate for his needs!
The problem with most in our society is that being flexible with situations like mine. I’ve tried for some time to look for any work. I mostly get I’m overqualified. So I’m being punished for looking for “easy” work because I’m trying to also take care of my son’s needs. It’s unfair. When it comes to FT work, I have to weigh my options to of what the pros and cons are if I go back to work FT. Health benefits, the costs of what will be increased if we go back FT, cost of healthcare, copays, extra expenses we typically had covered. We don’t even have a frame of reference because we don’t see those medical expenses and I know for sure, it’s way more than we can handle. We’ve been under for so long, I’m used to it. Sad, right? I can’t be the only family comfortable in this awkward place. But we have so many other pressing worries, we push those in the back of our brains. We have all these worry tabs open and that got lost in the browser we haven’t closed.
What keeps us going is that we are, despite circumstance, blessed beyond measure. Everyone has their stressors in life. We are lucky to have a child (some can’t conceive). We have a roof over our heads (others are homeless). We have food to eat and clothes to wear (others have to steal, beg or panhandle and carry what’s fits in their bags, if they have one). Having our child, changed how I viewed life. I believe if I didn’t have him, my view would remain the same: close-minded, unaware of society’s flaws/issues, unaware of what others go through, therefore, being ignorant to what they go through, completely self-centered and busy with our own lives. I am more patient (although so may argue that), empathetic, kind, and awake to the little things. Hearing my son speak/sign, being able to quickly identify what’s bothering him, being able to take care of him and NOT get others sick, taking him to his appointments, having memories that will last a lifetime. Funny, I’ve got a ton of acquaintances stating they have mom guilt. I’ve got a lot of mom guilt myself but when they express how much they miss out on because of work, I feel lucky to be able to not have that worry. It’s all about perspective and I am grateful for it.