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Archive for the ‘perspective’ Category

In the midst of some continuing troubled times with Nik’s increasing chronic pain episodes and so many moments when I feel tired and hopeless about any number of things having to do with Nik’s development and future, Nik somehow finds ways to make me smile and laugh. Or to weep with overwhelming love.

So many of these moments involve either his antics with food

Of course, I completely understand the attraction. I’m just as crazy about the big guy as I am the little guy.

Thank goodness for my two anchors; when I seem to lose my way they are the beacon which guides me back home. Back to what matters most.

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Were I to measure what I perceive to be the quality of life for my child and my family this past year —of my Nik’s progress —based on the past few months, I might indeed feel as dreary as the cold winter rain outside my window today. Nikolas has been ill a lot this autumn; he’s faced struggles which resulted in our removing him from school. He is still battling with the mysterious episodic pain which stops him in his tracks and makes my heart feel like it will shatter from frustration over my inability to make it stop —to find the cause to rid him of it once and for all.

I might also be depressed by the fact that my child cannot talk and doesn’t point to make his needs and desires known to those around him. Or the fact that he still doesn’t take any of his nutrition by mouth; he is completely dependent on his g-tube. I might be anxious about his sensory issues or his still being in diapers or any host of other things he can’t do right now.

Those are the things which throw themselves in my face each and every day. I can understand how some might feel they or their child are being held hostage —that there is some ransom which, if only they could come up with it, if only they could pay it would release their child and their family from the frustrations and heartaches faced each day. But those people who cannot see the child in front of them are missing the boat so broadly that they are in danger of drowning in the morass of their own self-pity, tears, and hand wringing.

I will be the first to admit that I occasionally indulge in all of those activities; sometimes I must simply for the release of emotions that threaten to pull me under. I must lighten my burden so I can rise above and keep moving for the sake of my child. Not some changeling who has replaced my stolen child in the dead of night —MY child who is right here with me in all his myriad moods, with his multiplicity of quirks, characteristics and disabilities each and every day.

In looking back at the year that’s passed —preparing for the newness and potential wonder of the coming year, I have been reminded of the amazing progress my son has made, the challenges he has faced and conquered, and the depth and richness he has brought to the lives of countless people each and every day. Even when I cannot see it, it is happening. All this with the help of, and sometimes in spite of, all the intervention we can afford to provide for him. In our case, that’s not a lot right now; if I won the lottery I would find a way to provide as much as possible for Nik. Alas, we have to pretty much take what his Medicaid is willing to pay for and cobble together makeshift solutions where we can. It isn’t always easy but is vastly rewarding.

If I blinked –if I didn’t take the time to review –I would have missed or taken for granted my son’s learning to walk and to stand, to sip from a straw, to remove his clothes, to zip his jacket and unsnap his pajamas. I would have missed him climbing out of his crib and ignored the marvel of motor planning and balance, coordination and sheer confidence that feat had to take.

I would have missed picking up on his uncanny ability learn the tune of songs he’s heard only a handful of times. His ability to use some of those same tunes to communicate things to a savvy listener —I need to wash my hands, I need clean pants, it’s time to brush my teeth, it’s time for medicine. I would have missed the transition of my son going from complete sensory overload —to the point of near catatonic state at the end of the school day— to my home schooled child who now knows and can tell me –using his body –what he wants. Who takes my hand in his and leads me to the armoire where he can see his shape sorter on top; he tugs my hand upward to ask for it. When I take it down and ask “Is this what you want, sweetie?” he grins and sits down on the floor to play with it —with me. It is something we always play with together and he knows it. I would have missed the complexity of his asking me to play masked in the simplicity of requesting a toy.

Or the beginning of him trying to communicate his hunger; he screams and cries and throws himself on the floor as if he is simply going to expire. It’s taken a while for me to catch on but now I can ask, “Are you hungry? Do you want to eat?” and he will growl a funny little guttural sound and lift his shirt to expose his belly —where he knows his feeding tube gets inserted and then he gets filled up. I would have missed the opportunity to teach him that he can say “Mamamamama!” when he is hungry and to know that I will come to him; he doesn’t have to thrash and fight for everything he wants. It is slow but it is progressing.

I would have missed the opportunity to see that my child has come so very, very far from mindlessly pushing buttons and keys to hear lights and music without purpose —or flitting from toy to toy to toy in a matter of mere seconds, unable to focus on any one thing long enough to understand what he can do with it, let alone complete a task —to watching with pride as he sits and plays, engrossed, in a musical book as he turns the pages and explores what the different sounds and pictures tell him. Or the ability to grasp a crayon and scribble a few lines on a page. I would have missed the significance of that development; the ability coupled with the desire to communicate something —even if it is purely for or to himself. He is communicating –a thought, a feeling, a sensation, a vision.

Or his wordless declarations of independence –of moving from diapers to pull-ups, from his special seating system to a regular booster seat all on his terms not mine.. His determination to walk or crawl up the stairs at nap and bed times with as little assistance as possible. His ability to communicate clear-cut choices of toys or activities. His unbridled enthusiasm about going for a ride in the car. His unfettered joy at playing with each of his amazing therapists.

I would have missed the increasing frequency of sly smirks or mischievous gleams in his eye. Or the need to drop everything to clap hands with Nanny or Granddaddy when he hears them come into the room. The way he rubs his cheek and forehead against my husband’s chin, feeling the reassuring scruffiness of Daddy. Or the squinty-eyed grin he gives me every single morning before he gets out of bed. My son communicates in so many ways if I can but slow down enough to hear him –take the time to learn his language.

I might have missed him learning to tolerate new textures, tastes, and sensations; he is gradually increasing his tolerance for things that I once took for granted like the feel of warm sand beneath my feet as I walk on the beach. Or the cool feel of water splashing on my face on a warm summer day. Had I not looked in the mirror at the reflection of this year, I would have missed those subtle shifts for Nik which have the potential to open up new vistas for our entire family.

My child is certainly not a hostage being held by anyone or anything; there is no need to ransom him from anything or for any reason. He shows me every single day that he is ready —and able with my help –to fight his own way out of whatever box anyone tries to constrain him in. He is my fearless, determined boy who will prevail because of the strength of his spirit and his capacity to inspire love, loyalty and commitment in those around him.

Woe betide his so-called captors of any ilk —medical conditions, neurological impairments, bad educational systems, and well-intentioned but misguided professionals even his parents if they get mired in fear and limiting thoughts. Nik will kick ass and take names later as he saunters out the door to his life. His very full, very rich, and increasingly present life.

If one lives each day wearing only the blinders of fear, limits, gloom and doom about whatever challenges their child faces, they will miss the child who has been right in front of them all along. The real hostage in this case is their sense of perspective.

I am grateful that Nik keeps mine in constant, if delicate, balance.

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In case you have been in seclusion lately, you are most likely aware of the Ransom Notes campaign recently begun by the NYU Child Studies Center. If not, please take the time to go here to check it out. Then, if you are as outraged as many, many people are, I hope you will go here to add your signature to an open letter to NYU-CSC urging them to halt the advertising campaign. This is not an autism-only issue; it is a case of perpetuating negative and harmful stereotypes about numerous disorders which can impact a person’s life. Education must include a more holistic picture of the person impacted. My son is not his diagnoses nor are any of these people or their loved ones their diagnosis.

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God, grant me the serenity
To accept the things I cannot change
The courage to change the tings that I can
And the wisdom to know the difference

Serenity Prayer

How fast the time flies when you aren’t paying attention to the big picture every single moment. I feel better after writing last night’s post and reading some of the incredibly supportive responses. I do forget sometimes that it is ok to feel the feelings and wallow a bit before moving on.

Today, I am moving on. Today. We’ll see what tomorrow brings when it comes.

My mother and I went to Tar-jeh (Target) last night for a little bit of retail therapy. Ok, very little bit; I needed to get a new coat and gloves for Nik now that the weather has gotten cold and damp. I found a very cute snow suit and gloves for a reasonable price. I’m sure you’ll see it in future ads, er um I mean pictures, on this blog. More importantly, I found some lovely traditional Christmas music CD’s for only a dollar a piece!

Music is such a vital part of who I am and yet, in our current situation, I haven’t been singing or playing music or even listening to much except when I am working out at the gym; even that one has been sporadic lately! I think that contributes a lot more to my state of mind than I realized. I’ve been feeling really down this past week over the prospect of not decorating for Christmas (too many dangers for Nik) and really scaling back due to finances. After finding the CD’s last night, I popped one into the car stereo on the way home and instantly felt more grounded and soothed. Today, I am listening as I putter around the house on this rainy, gloomy November day. Every little bit helps, right?

We had feeding therapy this morning; it was another wonderful session with Miss M. She is so proud of the progress Nik is making and was pleased to hear how well he did at Thanksgiving dinner; I haven’t blogged about that but he did great taking tastes of everything on the table (except the peas) and even tolerated a few very small soft chunks on his tongue without panicking. He’s showing a bit more conscious control over his tongue as well. Major progress.

I talked to Miss M about the augmentative communication (AC) and some of my concerns about whether she had enough exposure since she’s been working with “the little guys” for so long. She told me that there is a very big push now to start using AC much sooner so she is getting up to speed. In addition, Easter Seals has opened a new assistive technology department right in her building and we will have access to their services while we work together. We even agreed that we would extend the two sessions by fifteen minutes on the front end (we are the first appointment of the day) so we can get some extra time in.

I felt good as we left. The same kind of good feeling I had when we made the decision to remove Nik from school. A right feeling down to my bones.

Nik’s birthday is Sunday; I cannot believe that he will be four years old. It seems like only yesterday he was a frail, tiny bundle with wires and tubes attached to him. I can still smell, in my memory, the scent of freshly laundered hospital blankets and the slightly sweet plastic of his oxygen tubing. For so long I couldn’t even imagine what my child would look like without those things. Yet here I am today, mired in the memories and fearful of letting them go. Not because I don’t want to move on and forge ahead into whatever the future may hold.

I don’t want to forget where we came from.

I know that time will soften the jagged, raw edges but I am wary of letting the scar fade completely. I want to remember the fight in my son’s spirit –filling his tiny body –willing himself to defeat such seemingly insurmountable odds. I think if I can only hold on to that, I can remember more readily that same fighting spirit in those moments when the fight isn’t literally life and death. That my warrior-angel child has fought tougher battles and prevailed and will continue to do so –over and over, as long as he draws breath and as long as he is loved and nurtured.

Yes, that I can do for my child. That has been –continues to be– my special gift to him every birthday. Every day.

Hard to believe that four years ago Nik was fighting for his life every moment of the day.

Three years ago, he was just learning to sit up independently.

Two years ago Nik was unable to stand independently.

Today, I watch my child in awe and wonder as he rambles and roams about our family room –chattering and humming all the while. Listening to his laughter as he carries the pillows from the sofa –one clenched between his teeth, the other in his little fingers –to deposit them on the other side of the gate to the back hall. It is a game of which he doesn’t tire easily. I watch in amazement as he moves his large castle climber about the room, gauging exactly where to position it so he can climb up and reach something on top of the television. I scold him with a laugh; he relents with a smirk and scampers on to his large green toy bucket (a 20 gallon bucket that I stow his toys in at night) to climb inside and then tip himself over. From there it is back to the castle. He slides head-first backward down the small sliding board. He giggles when he hits the bottom and does it over again.

From such humble and frightening beginnings to the laughing, confident, perpetual motion machine I see today.

Perspective –that is his gift to me.
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Miracle
(Written by Linda Thompson/Stephen Dorff, Recorded by Celine Dion)

You’re my life’s one miracle
Everything I’ve done that’s good
And you break my heart with tenderness
And I confess it’s true
I never knew a love like this ’til you

You’re the reason I was born
Now I finally know for sure
And I’m overwhelmed with happiness
So blessed to hold you close
The one that I love most
Though the future has so much for you in store
Who could ever love you more?

The nearest thing to heaven
You’re my angel from above
Only God creates such perfect love

When you smile AT me I cry
And to save your life I’d die
With a romance that is pure in heart
You are my dearest part
Whatever it requires
I live for your desires
Forget my own, your needs will come before
Who could ever love you more?

There is nothing you could ever do
To make me stop loving you
And every breath I take
Is always for your sake
You sleep inside my dreams
And know for sure
Who could ever love you more?

11/30 — Edited to Add:

Good catch by Niksdad…so much for the clarity of MY perspective! LOL

Three years ago Nik was in the hospital (again) for correction of his abdominal malrotation and obstruction; TWO years ago he was learning to sit; Last year —his third birthday —he couldn’t stand.

Sigh, everyone needs a good and careful editor!

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