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“Mommy, Want, Please”

Our journey thus far has been filled with obstacles. Road blocks. Seemingly insurmountable barriers of communication. Barriers in language. Two Hearing individuals who are not only first time parents, but also navigating a very unexpected Deaf diagnosis.

When I was expecting, the common question seemed to be “do you want (or think) it’s a boy or a girl??” After our long struggle with infertility, and deciding to not find out the gender, I would say simply that I wanted a healthy baby.

And truly, I wanted a healthy baby who was safely delivered, and a healthy baby to snuggle at home. Healthy means a lot of things. Q is definitely healthy. He is emotionally robust and expressive, he is resilient in ways we could have never imagined or hoped for. Q is also adaptive, curious, and VERY independent. And I could not love him more for these sometimes frustrating habits in my little ‘three-nager’.

Truth is, he is going to NEED that tenacity during his lifetime. His little indomitable will and stubborn “Imma do it myself Momma” is going to be why he continues to surpass all of our barriers and obstacles. Last night, Q signed to me: “Mommy, more please” Yesterday morning, Q signed to me : “Please mommy, I want to play with the iPad” (in ASL, it’s easier: Please mom want play iPad. Oddly, my anxiety and emotions peak during these expressive times. Q’s diagnosis and journey so far has been out of the box, and frankly - brutal on our family. We struggled for a year and a half with no clear answers, no clear diagnosis, and leaving every appointment with more terror and unknown for our son that I could ever have imagined. The cumulative time alone of not knowing and not having a path set us so incredibly far behind. I received a letter yesterday about Q’s newborn bloodspot, as in my terror I was reaching out to anyone and everyone to get answers. Through some wonderful advice of a mentor and fellow momma, I was encouraged to have Q’s newborn blood sample tested for any congenital items that might have led to his diagnosis (or lack Thereof). The incredible thing, as I’m sitting here writing Q yells “Momma” at me, then signs ILY and blows me a smooch with it. Then he spells out the letters in a book he is looking at. Considering we started ASL less than a year ago, I’m so incredibly amazed.

So many wonderful things have happened since our last post!

  • Q had his first Halloween parade! It was the FIRST time he understood the concept of dressing up, and was Gecko from PJ masks. It was amazing. He’s yet to go trick-or-treating, but we will tackle that next year!

  • Q has begun walking beside us in stores. Not riding in the cart, and he has been LISTENING (to our verbal requests and our sign requests) with instructions. His receptive for verbal/aural and sign is significant. Q is in super absorbent mode right now taking SO many things in!

  • Q had another mapping. This was our first ‘fine tune’ meeting. We took him to the ENT with NO STROLLER! For us, this is unheard of. Q listened, he signed, and he only turned off the lights maybe 10 times (which is also getting better, haha!). He had a GREAT booth experience and sat independently for the first time. HUGE progress!

  • Q had a flu shot (as did Jim and I). He did REALLY well. Our fella is incredibly smart, and as soon as we started to disrobe for the shot, he panicked. We had to secure him, but it was over in a flash and he bounced right back. We have an ophthamologist appointment in December, and I’m crossing my fingers that it goes as well as possible. These appointments are daunting for a lot of adults. Over the last year the only place Q really gets to go is the doctors office, the ENT, or the grocery store. We have no fun time, or down time really, it’s all struggling to fit everything in around work.

We are now juggling three in home appointments a week, Jim and I working full-time plus our crazy commutes, and trying to fit everything in at pre-k that we can. We are exhausted. Q is exhausted. It’s Saturday morning and he is curled up in the recliner with a fuzzy blanket and his iPad (“Please mommy want iPad please play please!”). I want Q to be loved.

I want him to KNOW he is loved.

I want to fill him up with so much joy, strength, curiosity, wonder, and LOVE, that he can keep amazing us with his progress. Sometimes, I wonder if I’m enough to do that. Between our schedules, basic life needs, and going through our day to day...I’m scared that I’m missing things or could be doing more. And I’m scared that if I feel like I can’t breathe somedays that I’m going to fail Q. It’s a lot. It doesn’t go away. The worry, the juggling, the balancing. Normal parenthood is a daunting task. Navigating and learning an entirely new culture, and attempting to get Q the services he needs and find that balance that doesn’t drown us all is overwhelming. We get moments of joy, and we have to REALLY take them in. A year ago, Q was in hearing aides. We had found out on November 7th that he was a candidate for CI’s. ONE YEAR! Q is teaching us more joy than we knew was possible. He is learning, growing, and truly ‘becoming’ Q every day. I try my best daily to let go of my fears. Let go of my worries. I try to WATCH him. I try to communicate with him. And we don’t give up. We will never give up. And I know my kid well enough already to know that at least I’ve given him that piece of me, along with all of the love and more I didn’t know existed on this earth.