Joey will be 16 months on the 27th. In two months he will be a year and a half old. Time to get a repeat swallow study. Time to see where he is with his gross, fine, speech, language, nutrition, feeding. Numbers have already come in. Some say we are on a 9 month level. Some say a 12 month level. It's never the level we are "supposed" to be at, but somehow I know it is exactly where we should be.
This song is for Joey and me and our journey. The beauty is that he never feels like this. Mostly, it's just me trying to get my baby where he needs to go. It's me who walks away from every appointment wondering if I am doing enough. Putting in enough time and energy. Wondering where to find more time and energy. All I know is that the love I feel for you cannot be quantified by any number. It is immeasurable.
The title of the song isn't the most lady-like, but the words, like PINK are super powerful...
Pink – F**kin’ Perfect (Clean Version) Lyrics
Made a wrong turn
Once or twice
Dug my way out
Blood and fire
Bad decisions
That’s alright
Welcome to my silly life
Mistreated, misplaced, missunderstood
Miss, no way it’s all good
It didn’t slow me down
Mistaken
Always second guessing
Underestimated
Look, I’m still around…
Once or twice
Dug my way out
Blood and fire
Bad decisions
That’s alright
Welcome to my silly life
Mistreated, misplaced, missunderstood
Miss, no way it’s all good
It didn’t slow me down
Mistaken
Always second guessing
Underestimated
Look, I’m still around…
Pretty, pretty please
Don’t you ever, ever feel
Like you’re less than
less than perfect
Pretty, pretty please
If you ever, ever feel
Like you’re nothing
You are perfect to me
Don’t you ever, ever feel
Like you’re less than
less than perfect
Pretty, pretty please
If you ever, ever feel
Like you’re nothing
You are perfect to me
You’re so mean
When you talk
About yourself
You are wrong
Change the voices
In your head
Make them like you
Instead
So complicated
Look how big you’ll make it
Filled with so much hatred
Such a tired game
It’s enough
I’ve done all i can think of
Chased down all my demons
see you do the same
When you talk
About yourself
You are wrong
Change the voices
In your head
Make them like you
Instead
So complicated
Look how big you’ll make it
Filled with so much hatred
Such a tired game
It’s enough
I’ve done all i can think of
Chased down all my demons
see you do the same
Pretty, pretty please
Don’t you ever, ever feel
Like you’re less than
less than perfect
Pretty, pretty please
If you ever, ever feel
Like you’re nothing
You are perfect to me
Don’t you ever, ever feel
Like you’re less than
less than perfect
Pretty, pretty please
If you ever, ever feel
Like you’re nothing
You are perfect to me
The whole world stares while i swallow the fear
The only thing i should be drinking is an ice cold beer
So cool in lying and we tried tried tried
But we try too hard, it’s a waste of my time
Done looking for the critics, cuz they’re everywhere
They don’t like my genes, they don’t get my hair
Strange ourselves and we do it all the time
Why do we do that?
Why do I do that?
Why do I do that?
The only thing i should be drinking is an ice cold beer
So cool in lying and we tried tried tried
But we try too hard, it’s a waste of my time
Done looking for the critics, cuz they’re everywhere
They don’t like my genes, they don’t get my hair
Strange ourselves and we do it all the time
Why do we do that?
Why do I do that?
Why do I do that?
Ooh, pretty pretty pretty,
Pretty pretty please don’t you ever ever feel
Like you’re less than
less than perfect
Pretty pretty please if you ever ever feel
Like you’re nothing
you are perfect to me
You’re perfect
You’re perfect to me
Pretty, pretty please if you ever ever feel
like you’re less than, less than perfect
Pretty, pretty please if you ever ever feel
like you’re nothing
you are perfect to me
Pretty pretty please don’t you ever ever feel
Like you’re less than
less than perfect
Pretty pretty please if you ever ever feel
Like you’re nothing
you are perfect to me
You’re perfect
You’re perfect to me
Pretty, pretty please if you ever ever feel
like you’re less than, less than perfect
Pretty, pretty please if you ever ever feel
like you’re nothing
you are perfect to me
Baby boy-- we are getting there. One step at a time. We're in this together.
Posts
Dear Jenny,
ReplyDeleteI stumbled on your blog quite accidentally on purpose a few weeks ago. Now I know why....My son was born 18 years ago with a rare genetic disorder. Multiple physical anomalies....cognitive delay....so rare that to say he is 'writing his own book' is an understatement. I remember the days when we went to have assessments, and being the educated and informed person that I am, I knew what the outcome would be, yet still I held out hope that they would see something I had missed....that maybe on that day Sam would pull out a new trick. He didn't, and it wasn't long before my husband and I decided that these assessments were putting unnecessary pressure on all of us.
Sure we continued to take Sam to therapy and get him whatever treatments necessary to give him every opportunity to reach his maximum potential, but for us we no longer needed someone telling us what he couldn't do. We were, and still are proud of every baby step he takes. He is who he is.....he IS perfect....and this world is a better place because he is in it.
Like Sam, Joey will thrive and grow because of the unconditional love he receives from his family and those around him. He will never stop amazing, and amusing you. I wish I could tell you that the day will come when you can say to yourself that you have done 'enough'...but it won't. You will never stop loving and nurturing him...because that's what mothers do.
Hang in there girl, you're doing just fine. God bless and Merry Christmas!
Deborah
Yes! xoxo
ReplyDeleteJenny, thank you for putting my EXACT feelings into words- Evan just had his annual evaluation for Early Intervention, and while there are usually compliments on how he's coming along, this meeting seemed a bit more negative than previous ones. "It's never the level we are "supposed" to be at, but somehow I know it is exactly where we should be." That is SO so true!!
ReplyDeleteAnd Deborah, thank you SO much for your words of wisdom- you turned me into a puddle of tears, for I so needed to hear that right now. I am usually pretty laid back about Evan's therapies for the most part, but after this last meeting I worry that I'm not doing enough. I had been focused on his strengths more so than his weaknesses, and I really need to re-focus on that. He is perfect to me and will always be.
Love all of you mamas-- Deborah, Meriah and Amy-- thank you for your wisdom, support and words that give me strength and fortitude. I'm singing to myself right now..."You have to accentuate the positive....." :-) Hugs-- Jen
ReplyDelete