Joey- The Professor

As I was completing the lengthy morning task this morning, I was thinking about how blessed Matthew and I really are. I was thinking back to a couple of months ago when we first were faced with this difficult diagnosis and how we were going to handle this.There were a couple of questions that we were very unsure of the answers. How would I handle this? How would Matt handle this? Will our families ever understand that their first grandchild was going to be disabled? Will this guilt ever go away? How will our marriage survive? How bad IS it truly going to be? Will Joey blame me one day? And of course the question you are never supposed to ask...why God?

Now, while not all the questions can be answered right now but I do know that we will be okay. As I was cleaning his scar this morning, I was also thinking about how much Joey has already taught me.

Things my two week old child has taught me:
1- Responsibility.We have to keep up with doctors names, numbers, and appointment. Cathing (although now we only have to cath every 6 hours now! BOOM!) cleaning and maintaining his back incision. Checking his fontanel to make sure its not bulging or swelling. When he spits up having to guess if is just normal baby stuff or his hydrocephalus. Any type of red mark having to ask; is this just a red mark or did he come into contact with latex..which we still don't know if he's even allergic or not. How is his poop looking since he has bowel issues. Making sure he takes his medicines on time everyday. When should we call the doctor when it could just be a "normal" infant thing? We have to make these assumptions every single day. AND on top of all those things, we have the typical baby things to be concerned about. SO yeah if that's not responsibility, I don't know what is.

2- Compassion. I never knew how much I could love something as much as I love Joey. I will admit when we first found out about spina bifida, I had a lot of hostility and very little tolerance towards other peoples problems. I mean I still feel that way when I see someone complaining on facebook about how stuff they can control sucks but when I hear about other things that they can't control my heart goes out to them. I will continue to pray for them, just like everyone has done for us.
 
3- Patience. Patience with everything. Patience with Joey when he's crying because he's hungry or mad because he's being messed with. Patience with Matt. He's been a wonderful dad but in his defense I have been a "mother" since June but now that Joey is here, this is something completely new to Matt. But bless him, he tries his absolute best. And I love him for that. Patience with family. Patience with our dogs. Even patience with technology.

4-  Being a better housekeeper. Now anyone that knows me knows I am the world's worst cleaner. I hate to clean. I mean I REALLY despise cleaning. I mean why clean up something when you are just going to mess it up again? But now that Joey is here, I want to make sure the dishes are done because it really makes things easier on me at 4 am when he's hungry. I also never knew how a tiny baby who never goes anywhere has more laundry than Matt and I combined. Craziness.

Now that is not everything he's taught me, but those are pretty important things to me. Those are things that I have never really thought about. And if you would have told me a couple of years ago, that I would be responsible for caring for a "disabled" child I would have told you no way. If anyone would have told me about the decisions that we have had to make just for one sweet baby, I would have again told you no way. Matthew and I are very happy with the decisions we have made and while they haven't been the easiest they have been the smartest. And I know I would have never done it any other way. I also think I have somewhat of an answer to that other question- why God? I think it's because he knew that no would ever love this little boy more than us and that he knew we could handle it. Through him of course. And I thank him everyday for giving me the opportunity to do this awesome job as Joey's mother!

This is a poem I found that I really enjoyed and I hope you do to!

Poem: The Special Needs Mother

Before
When I worked,
When I worked at a Job, that is,
I thought I worked hard.
And I did.
I thought I was anxious.
And I was.
But nowhere near
Nowhere Near as hard as I work now
And nowhere near
As anxious as I am now.

But for some reason
For a very good reason
I am happier now.
Lighter now.
More joyful.
And a wee more playful.

And Liberated.
Feminism has nothin' on me.
I am liberated.
Liberated from the trivialities.
Like worrying about what people think
What they think when I dance my funky dance
Or wear my high heels in the gym

Or play with my child

In the supermarket forgoodnesssake
Or when I tell you, a stranger, what I really think
Like you have the most beautiful hair.
Seriously.  Shiny and sexy.
And liberated enough
To smile at your surprise.

I am all these things.

For a very good reason
My child, see, is special needs
And so much more.
SO much more.

So much joy
So much laughter
So much light

He is perfect.

He opened my narrowed eyes
My tight grip
My rocky heart
He taught me to let go
Of narrow expectations
Of trivial worries

Like getting into the right school
Or having the right stroller
Or learning the right musical instrument
At just the right age


So he can get into the right college
And the right job

As if  there were such things.

He taught me what really is right
Like playing
And laughing
And enjoying the now
And loving the simple things
The magical things that we take for granted
Like echoes
And doors.

And if you're wondering
Like I probably would have
In another lifetime
No, I wouldn't want a different child
Or an additional child
Because my child is special needs.

Because, you'd know,
Like I do
With all my heart
That I already have the perfect child.

And that makes me
The happiest mother.