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.
(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!