At 42 Degrees

At 42 Degrees

Friday, May 8, 2015

What I Didn't Know About Motherhood

Five years ago when Isaac was born, I felt confidently, and even over-confidently, I confess, that I had a handle on this motherhood game.  

After all, my oldest son was 21 years old, my youngest eighteen, from teething to toilet training to growth spurts to adolescence and even open-heart surgery when my oldest son was 10 months old, eons ago in the past century, and all the concerns in raising a child with a ‘heart-condition’ that needed monitoring, so I wasn’t a rookie. Or so I assumed, then Isaac was born, and everything I thought I knew about motherhood was thrown out the window, because in the face of Autism – realistic expectations, just don’t apply.

Beginning with a severe case of jaundice, which sent Isaac to the NICU for four days, and then two months of bilirubin lights, nothing was typical, or familiar – such as nursing your newborn wearing sunglasses, praying for sunny days in the depths of winter, and vaguely wondering why your precious baby wasn’t soulfully gazing into your eyes when he nursed, once those bright lights were no longer needed.

No patty-cake, no splashing in the bathtub, Isaac was very business-like and polite as a baby: “Do what you have to do, and get it over with” – said his expression during bath-time or when changing his diaper.  It was puzzling, especially since Isaac was clearly so bright – he smiled, he laughed, his expressive face, adorably communicated his needs and wants: food, cuddles, sleep, with giggles interspersed.

And when I say adorable, I do mean ADORABLE!!!

Walking for Isaac was early – eight months old, he crawled to the sofa, stood up and not walked, but ran, no joke, never had I seen such a physically active child, as my youngest son, as he explored the world through gross-motor movement. However, while walking and running and climbing were early – talking for Isaac wasn’t.  Such a bright little guy, Isaac could repeat many words, if he wanted to, but rarely did those words – cheerfully piped, ever reappear.

Strong willed? That wasn’t an unknown, hello my older sons, but Isaac’s level of mental endurance: was. Again, what I thought I knew about raising a toddler went out the window, even as the specter of those double AA’s appeared on our horizon.  In fact when the speech pathologist, gently told me that Isaac had Apraxia, I merely said, “Ok.” – because I had no idea what the motor-processing disorder entailed. Her assessment that Isaac should be flagged for Autism, was a little more worrisome, but again – Autism, to me, was just a word, I had no idea what its impact upon my son meant.

And in many ways I still don't.

Isaac's prognosis for the future is still a huge question mark.

Yet, we have a child with major communication difficulties, to raise,...and HOW at times is also a huge question mark. 

How to engage a child, who won’t engage? How to assess and nurse your child when they are sick, a HUGE and very scary difficulty - for him and us, and it all falls back on communication. How to communicate with a child, who doesn’t seem to attend to what you are saying? How to read to a child, who doesn’t seem to comprehend what you are saying?  Without comprehension, how can you tell your child – how much you love them? 

Well, the love has been easiest of all to overcome,...for these three remain: faith, hope and love and the greatest of these is LOVE. 

Most assuredly Isaac knows he's loved, after all we both survived days and nights of such adventures as the GREAT INSTANT COFFEE SPILL,....eesh it was a mess, our house smelt like Starbucks, but my little guy didn't understand,...what to do, but clean him up, offer kisses and hugs, and pray for wisdom to overcome such communication disconnects,...

Motherhood has highs and lows, this much I knew from raising my older sons. Also Motherhood is a journey and not every day is the pathway straight or smooth, this I understood, and this I could live with, but motherhood and Autism is a different journey: you are blind, your hands are bound, and your feet are hobbled, and you don’t know where you are going – at least at first.

Thank you special needs professionals who dedicate your lives to helping children with special needs – YOU are our guides, lighting our way – like fireflies in the darkness, you shine, illuminating the pathways enough for us to see.

Also, thankfully a mother’s heart is made of stern stuff, even when battered with bewilderment and despair, because no mother would even pretend not to be devastated to have their child endure disabilities – I know, I was, and cried buckets, and then dried my eyes and got to work.

Because, trust me, those bound hands, don’t stay bound long, there is nothing more determined than a determined mama, and I thought I knew about such determination, but Isaac takes everything to the next level.

Like, I never knew I could endure – years, not days, but years, like in over four years of sleep deviation, or begin a blog – open to the world, to share our son’s condition with all the joys and challenges.  I never thought, I’d have to deal with toileting issues, we’ve had to deal with, or nurse a child to the very end boundaries of toddlerhood. I never contemplated the thought, I would have to learn to communicate with my child, by alternative means, or wait so very long to hear him say, “Mama."

Let's not forget the puzzling sensory issues, which make birthday cake icky to a birthday boy. 

Again and again, I say these words, but for me, they ring so true: Isaac experiences the world in a different manner, and he makes sure YOU do, too.  Just tonight, two more Miracle League Buddies, discovered this truth for themselves, and for motherhood – it exponential.

 The joy is exponential as well, and duh, I should have known that, but this go-around with motherhood, keeps taking me by surprise. My youngest son dances through life, so patient dealing with my communication difficulties, because I can’t hear the music, he hears. I can only see that sunshine smile, and those dancing feet, fast and fleet, exuding sheer joy – because to Isaac, life is to be lived.

And as a mother, I thought I knew that, but life with Isaac is not academic: What You Need To Know About Motherhood, In Five Easy Steps. Life with Isaac is to be experienced. My youngest son, barely verbal, teaches me how to live each moment, even as we walk by faith, not by sight, because in many ways – we still don’t know where we are going, but we’re together, and per Isaac’s instructions, we don’t walk, we dance, and it is Isaac who unhobbles my feet and holds my hand during this journey. And it’s Ok, I can’t hear my son’s music, he can, and all I have to do is follow his lead.

This post would not be complete without a shout-out to my older sons, Teddy and Michael, it’s been such a blessing and joy to be a part of their lives to see them grow into such fantastic men. Isaac has good role-models.

Flip cap is Michael, the bearded one is Teddy

And yes, this journey with I.I. is different, and yes there is still so much to motherhood with a special needs child, I don’t know, but you know what? It’s Ok, the Lord is gracious, to help me figure this out, step by step, for my youngest son is challenged, but not incomplete: Isaac is Isaac, and to us, he’s more than a blessing – he’s a sacred trust. Truly it is such a privilege to love and care for this child who brings so much joy to our lives we can barely believe he is ours – Thank you, Lord, Thank you!!!

To every mother out there - Happy Mother's Day!!!

Until I post again,...may God bless and keep you!

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