Cognitively, Realistically, Joy-filled

The past month or so has been a strange time. It seems that Ivey-lou-who bounced from the surgery last November straight into another chapter. I guess I would say that the ‘hallway’ wasn’t quite the hell that I was bracing for, not that I expected it to be too bad, just the unknown of what to expect. She has been happier somehow and with that she has found more confidence in her world. She has become a little more daring, trying her hand at a few new skills.


And here in momma-world the wave of ‘not doing enough for her’ is engulfing me. It’s completely like the ebb and flow of the tides. Sometimes feeling like we are just enough steps ahead, other times, feeling so behind. She surged in the past few months. She needs more. Medically she has leveled out it seems, for now, there are still a few loose ends, always will be, but medical is not its typical anymore and her cognitive skills are spiking. Cognitive. Wow. She needs more in-put, more signs, more hands-on time and more help to develop concepts.

Have we ever had this conversation before? Have we ever had a conversation about what’s inside that brain of hers – the stuff she can do and the potential waiting to burst out?

She is ready for the next step. Cognitively –

Two weekends ago I went to a workshop and got to sit and listen to a mom with two boys, both born deaf, talk about parents needing to submerge themselves into whatever it is that the ‘child’ needs. Her boys needed a family who could sign, communicate with them, and they went head first into the deaf world. She’s fluent now. I keep thinking back on her awesome presentation and wondering why I didn’t plunge into signing more – I sign ---limitedly, enough to get by with Ivey, but in the past month and a half, Ivey surged. Now I am holding her back. She has something to say, but not enough in her skill and concept bank to put it back out. I don’t want her world to be full of labeling and following commands. She is more than that. Don’t get me wrong, even if I did sign more – the process of teaching Ivey what the signs mean, tactically, is long and a somewhat hard path, she not only needs these random signs, she needs to develop the concepts behind them. But her ship is ready to leave the dock and momma better get on her boat – Ivey isn’t waiting.

Anyway, I did plunge into the deafblind world a couple of years ago and am pretty proficient, even if I say so myself. And deafblindness is not something that can be split into two categories, one being the blind side, the other being the deaf. No. It is SOOO much more than that – the word ‘deafblindness’ does not actually describe this tiny segment of the population proficiently. They have their own unique way of learning, much different than a blind person or a deaf person. So now it is time to plunge further into the ‘hard of hearing’ end of Ivey’s world and become a more aggressive signer, which means all of us residing under this roof will plunge in head-first. We sink and swim together. Still the guilt monster is gnawing away – but note to self, these past four years have been a rollercoaster of medical hell at times… especially on Ivey, she wasn’t ready –she is now. All in due time, right?

Like I said an interesting different kind of month or so have passed. The boys went with me and Ivey to the Ga PINES workshop. They got to go to their first Sibshop. To see their enthusiasm was amazing. They spent the entire day with kids just like them – somehow it empowered them. As much as I crave meeting and talking with other moms with children with special needs, the boys need that type of relationship too with other brothers and sisters. It’s funny how the bond is instantaneous, and very unique, very special.

And in the midst of all the good that is swirling around, there is always the reality of our world that keeps up anchored. Another means for guilt to creep in...things being too good....and it has been testing me as a mother, a mother who wants her daughter to have wings. I have been sitting watching another mom, dad, family, the siblings and two special little girls battle for life in this world. My heart hurts for them and selfishly my heart hurts for us, I know that at any moment we could slip right back into the sludge. It is a very weird emotion. I want to help, but don’t really know how. I feel I look at her with the same eyes that I have seen my own friends look at me - helpless. I know how bad the mom’s heart hurts and wish I could hurt for her for a few minutes just to give her heart a break. Thing is, I know her hurt, my hurt still sits down in the pit of my heart, and know I could take her hurt for a few moments, if it would give her a moment of peace, real peace, and a moment to not be rushed in the anxiety and be able to breathe or sleep for a second-the same things I have wished for so many times when uncertainty loomed. But I just listen to her words and have nothing that truly helps.  And then this past week Ivey lost a classmate. Another blow of reality, way too close to home.  Through this my first reactions were to not let Ivey out of sight, and try and harbor her. But that is selfish and unrealistic. Like I said, we are anchored by reality. We know where we are, where she is and still somehow she defies the odds. But all this makes me think about things that I have wished would go away, but know, are truths of this life. Time is precious, as is she. And who am I to keep her from the world, or the world from her. I want her to live life. It just all seems unfair sometimes.

And I hate that word, literally…"unfair". The boys say that sometimes, “It’s not fair.” I tell them nope, life’s not fair, get over it, move on.. but really when it comes to these little one who have to fight their whole lives just to have life, is that fair? When it is not a decision they get to make? As their parents, well, we’ll fight, we are pretty tough – we push through but why is their time on this earth so different? But I guess that is the difference, even though they are so little, their time is no more guaranteed than yours or mine. They just wear it out on their sleeves for everyone to see. They find more joy in their lives in a few short years than most adults who live out a full life. And even though physically their time is harder, spiritually they are full and from watching the world from Ivey’s point of view, she is surrounded only by people who love her, who cherish her, who do only good by her and she blesses everyone she meets because they know they just saw a miracle with their own two eyes. There are angels in every corner it seems.  That-  is a good life. And even though it is so hard sometimes on us, the bystanders, they bring untainted joy to our lives. Joy that we would have never known otherwise.
Okay enough of that...just please pray for peace for these families. 

So that is the past month or so in a nutshell.

Realistically Joy-filled.

By the way – Ivey will begin her first ballet class this week…