Loving Every Bit of You

Loving Every Bit of You

I kiss your head and stroke your hair

And wrap you in your blankie tight,

I whisper, “I love you more each day”

And watch your eyes close for the night.

This quiet time is so precious

A moment for mommy to reflect alone,

How did it happen, yet again?

Another day gone, things left undone.

“I should have done more,” I think.

“How do I still have all of these tasks?

My day was full, occupied and busy

What did I do all day?” I ask.

I should have worked more on your standing

A moment missed is a moment lost,

How will you ever get good at walking

If I don’t work with you at any cost?

I should have pushed you in therapy

Instead of coming to your defense,

How will you ever learn to use your hands

If I don’t make you use that sense?

I should have exercised your vision

By using our latest picture cards,

And what about your communication?

We’re behind a million yards.

I should have used more music

For hearing practice throughout the day,

And I should have tied more sensory

Into our fun games and play.

I should have made some fresh blends

Of your most favorite foods today,

How will you ever be able to eat

Without practice eating oral purees?

I should require more signs from you

I gave in to your needs too quickly,

How will you ever learn to ask

Unless I learn to be real picky?

There was so much that I missed today

So much that I should have done,

How will you ever catch up

When today’s already come and gone?

I hear you take a big sigh, in sleep

And I watch your chest rise and fall,

I remember that there was a time

We feared we would not have you at all.

You, my child, are so precious

You are my everything, my son,

Every part of my day revolved

Around loving you, my number one.

We didn’t work hard at walking

This truth I must confess,

But we cuddled in our comfy chair

And I gave you 100 kisses, no less.

We missed a chance to practice

New things in therapy today,

But when I said, “Craaaazy baby!”

You had a new, fun sound to say.

You may not have practiced your vision

But we watched your favorite show,

Your eye tracking was spot on

I especially love how your eyes glow.

I turned the sound up loud

During your favorite Frozen song,

And it almost seemed for a moment

As we danced, you sang along.

Plans for sensory play fell through

But I smiled as you used your hand,

To grab the shovel from our neighbor

That he carefully buried in sand.

I hoped you’d eat two feeds today

After all, you’ve been eating so well,

But I saw you were having a good day

And I didn’t want to trigger seizure spells.

We missed some chances to sign today

But I know how you best communicate,

Often it’s your heart speaking to mine

That’s a language I can’t negate.

So now I see much more clearly

All that happens in our day,

It’s not about tasks and milestones

But loving every bit of you, in every way.

I managed to teach you much today

And you have taught me even more,

It wasn’t things I was told to do

But spending time with the one I adore.

This life is short, not long enough

My time with you may be even less,

So I choose to use every moment

Making memories, and not regrets.

I love you my angel, and always will

You’re everything; and in all I do

I promise to let the small things go

And use my time loving every bit of you.

This poem was written out of feelings of frustration and anger.  I needed a way to vent, and it came through words.  I recently heard AGAIN comments about how I am not doing enough for Jayson.   "He would be walking by now if you just worked enough with him."  "He wouldn't need that feeding tube if you would just feed him."  "He would be talking by now if you made him.  Instead, you just do everything for him."  It is clear that these comments come from people who just don't understand.   They are founded on ignorance.  But they hurt.  They cut me to my very core, because they often come from those closest to me.  I already have many feelings of inadequacy, as most mothers do.  I have my insecurities and at the end of every day I think of what I could have done better.  But honestly, I'm trying to steer away from that.  It's not healthy, and quite honestly, it's not what life is about.  Yes, it is very important for my son to work on his therapies and developments.  He doesn't just stand up and walk one day like most kids.  He needs the teaching, coaching, support and practice.  But do you know what he needs even more?  His mommy.  My love.  Security.  Hugs and Kisses.  So yes, we work on things every day, but I am DONE going down my long checklist of therapies and checking off the things we have done and highlighting the things we haven't.  D.O.N.E.  

Why the sudden change?  Because my life got shaken up again.  We had another hospital stay, after being home for 1 1/2 years.  We had a rough battle with seizures, and we're still fighting.  I lost my baby boy for weeks, in the sense that he just wasn't all there or interactive.  I am reminded how quickly things can change and how fragile life is.  I do not want to take another moment for granted.  So honestly, since Jayson has had such a rough month (and so have I), we haven't worked a lot on therapy.  There have been more important things... like maintaining a healthy heart rate, eliminating seizures, keeping calm, sleeping, and surviving.  

And this one BIG 'aha' occurs to me tonight:

What if Jayson left us tomorrow?  Would I say, "Well, sure glad we got those therapies in yesterday!  I'm glad he was able to take a step yesterday before he left this world."???  No.  Not even close.  Do you know what I would say?  "I'm glad he sat in my lap for 30 minutes and just played with my hand.  I'm glad we watched Cloudy Meatballs 2 and laughed together at the part that says, 'There's a leek in the boat.'  I'm glad I just stared at him and watched him play.  I'm glad we read Pete the Cat books.... over and over again.  I'm glad I took those silly selfies and made a fun collage and had Jayson help me pick which ones to use."  THOSE are the moments that matter.  Jayson may not be able to walk.  He may not ever be free of his tube, and he may not ever be able to speak. We don't know what his future holds.   But he will always be loved, cherished and adored.  Always.  And I made a promise to him today to prioritize our time together focused on the things that really matter.  And if we include some sensory play, and take some steps in the process, PERFECT.  Because what really matters is cherishing the time we have with those I love.  

So I plan to spend my time, Little J, loving every little bit of you. xoxoxo