Not only are we on a learning path with Q's hearing, we are on a learning path with our ability to hear the hard things, and to really listen to those things, using them as fuel forward in our path.
There's been a multitude of hard things.
You think after awhile the hard things roll off easier, perhaps you don better armor or work on strengthening yourself...but it's harder when it's your child. Adaptability becomes lost, and reasoning skills are no longer employed by logic you think you have.
I've struggled and am still struggling with doctors, providers, and specialists labeling my child.
I’ve become defensive, and not a good student. In this way, I’m failing Q.
I'm not questioning their expertise, their knowledge base, their background and YEARS of immense skills I will never have, or their love for my child and their cumulative desire to also see him do well. I trust them. I believe them.
I'm simply saying that when you know your child is a certain thing, let’s say Q is a sunrise, and they are telling you they see a sunset...
While you do your best to see it from their point of view guided by their expertise, sometimes it's impossible when you so clearly, and with detail, know-see-feel that sunrise.
It's depleting to our beings taking in constant information.
Good news, bad news, at this point it's simply an inundation and overflow of information.
One more thing to research, more to read up on, to reach out for help and guidance, and to react.
Our reactive muscles are exhausted, our proactive muscles are strained, and yet we feel it's not enough. I feel it’s not enough, and I want more for Q.
The term "Bull in a China Shop" was brought up recently, and it's something I haven't heard in awhile.
It aptly describes how I'm feeling.
We KNOW our child. We know Q's heart, we know his mind, and we mostly understand some of his toddler logic.
We see his brilliant engineering skills at such a young age, we see his tender heart when dealing with babies and any animals - including our feisty chickens - and we see his empathy when he helps my dad, his Papa, around and is always checking on him, holding Papa's hand to guide him safely, and more.
We've seen him complete puzzles effortlessly at a very young age, and have an awareness that his grandparents and others refer to as an 'old soul'; like his Momma.
Quinn is our SUNRISE.
He has a source of joy and resilience like I’ve never seen. I’m constantly concerned about that resilience, and about long term effects from such a traumatic few years early in in his development. I’m actually terrified.
We have so many challenges, and with the late diagnosis, the series of events within our family, our work lives, and our community, each thing has made every single step on our journey it’s own monumental challenge.
The transition to the school district has left me exhausted, numb, stressed out, and discontent.
I simply do not have an adequate background nor do I have the education to understand all the systems. Parent's and their children in need of these systems are at a very great disadvantage without strong supports and advocates in place. Everyone has solid intentions, everyone is doing their jobs (and more), and no one is sitting back twiddling their thumbs.
But if you don’t know, you simply don’t know.
There is a gap and a huge missing piece in IEP's, and that's someone outside of the school district who assists and manages the family.
I truly believe that families in situations like ours: meaning health problems that translate to social and emotional well-being, learning/speech/hearing delays, or anything with great impact that begins with a health diagnosis of some sort, deserve a liaison that works collaboratively with the hospital teams (of which we also have many and it's diverse), the school, the early intervention providers, the daycare's, and anyone in the realm of your child, and works to structure it so it allows all of these important team players to do their jobs within their specialties.
I feel that some days I’m decent at being a mommy. My specialty is providing for Quinn and trying to provide for my family, along with making sure he is fed (it's a task!), mostly clothed in clean things, clean as a busy toddler can be, and that he has a robust childhood mixed with learning, fun, discipline, good sleep/eat/teeth brushing habits, but mostly that he is empowered emotionally, physically, and mentally to grow into a decent human. I also smooch and hug him until he can’t stand me anymore, and then I start over!
My specialty is not in navigating the waters of multiples providers from multiple resources and locations, or scheduling these providers, and pushing our forms, or following the silo approaches in place.
We are struggling to stay afloat amidst these waters because even though we have a Deaf child who requires these services, it's an entirely new process for us to have a child in school, let alone a Deaf child who has specific needs and very complicated service needs.
I want all of these differently specialized and amazing folks to have time to focus on my son. I want a Case Manager of sorts who has the ENTIRE picture of my son. I keep seeing things, that once a concern was in place that it made an impact to the bigger picture...where things might have been determined much sooner, services in place quicker, and a clear path for everyone if one logical human was providing the overview.
I also feel that if I'm not constantly connected to my email, my phone, and all the members of ‘Team Q’ that I will miss an appointment, that I will miss providing information to one of the team members when we are in a tight turnaround for services, insurance, or funding , and so much more. With a proposed Case Manager in place who collects and distributes ALL information to the entire team, and thinking of the time it would have saved me and all of Quinn's various supporting team members...it's significant! It's hard enough to ensure Jim and I are on the same schedule of needs with juggling work and the basics of living to ensure that we don't forget something.
We are fortunate in so many ways, Q being our brightest sunrise, of course.
In spite of the struggles I try to find a few moments of every day to be thankful, and some entire days are filled with thankfulness that we are where we are.
It's been a hard fought view up the mountain to even see this sunrise, and we don’t want to forget to bask in the brilliance of it.
But not every moment is basking, and many moments are so hard fought for, that we've lost sight of how far we've come.
When things are the hardest to hear, I try to pay more attention and focus on simply how to make it easier for Q to hear in the long run.
Because finally, we know he CAN hear!