12th Song... #Pipisbrave


The pre-surgical appointments always do me in.

After I've reported her medical history, including 11 operations, numerous hospital stays, daily medications & a few complicated disorders like Celiac & the ever-so-critical Type 1 Diabetes. Whomever, a Doctor, a Nurse, a Therapist, a Medical Student, a Receptionist - Doesn't matter, cause they all are kinda in disbelief that the spicy child in front of them, calling them rude and making them act silly right along side her. The child that's crawling into weird spaces like under desks to hide & then yell "Boo" & is giggling till they can't help but join in too. That this beautiful little soul who gives out "brave pumps", repeatedly tells them "Thank You" & obviously is her momma's heart, has been given such a hard hand to start life with.



And while most fall in love with her, ALL of them once they realize what a WARRIOR she is, give me this look, like "WOAH."


Meaning two things:

1 - That Pip is incredible. To be the person she is despite ALL of it.

And 

2 - "Wow momma, that must be intense"



And it's normally around here where I crack.
Where the reality that in a few days time, we're back in this place.


Of longer bedtimes because I need to soak her in so badly.
Of me eating-every-emotion-ever via the cocoa bean.
Of back-to-back-to-back-to-back appointments.
Of me disconnecting from friends, the blog, life.
Kinda cocooning myself into my own head.
My own Hometeam.





It's the only way I know how to do it, at this point. 
It's this weird zone I have to go in. Just to survive.



It's almost like this place where I am forced to find God. Because I have no where else to turn.
I have to beg someone to help keep her safe.
I have to weep in gratitude when she's back in my arms.
And I have to ask for strength from elsewhere because at times it feels like I just don't have enough.



On Dec 12th my 3-days-shy-of-five-year-old is going for her 12th surgery.



In reality it would be well past 20 - But thankfully, the community of Doctors that provide her care, come together & operate at the same time to save us all this exhausting experience.



And at some point leading up to the other 11 I've always cracked.
Something sets me off.
The tears can't be held in any longer.
And be that I am losing it in a Doctors office.
Or hugging it out with a Nurse.
If I have to break - I break.


And this time, was yesterday, when Pip was getting fitted for a wheelchair & walker. It was like a flashback to when we needed a walker to help because of low-muscle-tone due to Down syndrome.



And I couldn't even help it.
I just started to cry.

This is the 12th song I've had to find.
That is perfect for singing her to sleep.
As a baby they started as lullabies.
Then I rocked her Adele & Justin phases.
Last one, I went in hard with our National Anthem.


And as I used my sweater's sleeve to wipe away some tears, I knew without a doubt, the song to sing for her 12th.



We got this. I know.
I just can't wait, to be on the other side of it...






#bravepumps
#PIPisBRAVE
#myeyeshavebeenpuffyfortwodays


6 comments:

  1. Sallnatt7.12.17

    It's no wonder you go into a "zone"! That is when God is carrying you. Pip is so strong because God and Mom are there without fail. Bless you all <3

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  2. Anonymous7.12.17

    Oh Mumma.

    Biggest of hugs.
    I am speechless.

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  3. You got this Momma! Sending you love from Denver, Colorado. From one beautiful family touched by T21 to another. We will be praying for Pip, her doctors and her amazing family.

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  4. I will ask God in my prayers for his presence with You and Pip and Family and to watch over you all,she will come through with flying Colours!!!!!

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  5. I cannot even imagine. One open heart surgery and that’s all my heart could take. My prayers and all the love a Mama needs in those hours of fear, of doubt, of pain, of hope, of longing and of desperation. Prayers for Pip!

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  6. Your love will carry you through this time as it has so many times before. God bless you and God bless Pip.

    ReplyDelete