My daughter turns 10 years old one week from today.

My entire week has become devoted to planning the ultimate Minecraft party.

We celebrate birthdays quite enthusiastically around here.

Let me tell you why.

 

My Bella is a medically fragile child. I just learned that term about a year ago when a professional referred to her as such.
So, there you go – a medically fragile child.

Bella has Congenital Nephrotic Syndrome of the F1 variety – basically, the most rare. You can google it. Keep tissues handy if you do.

Upon Bella’s very rocky arrival into this world that miraculously she and I survived, we were told (by those who have won awards for knowing such things) that she had a 50% chance of reaching her 5th birthday.
Next week, we are celebrating her 10th birthday.

10.

 

Now, I cannot speak to what it is like to experience the death of a child as a parent. And out of the deepest respect and honor I feel toward dear, beloved people in my life who have experienced what I believe to be the most horrific experience ever, I will not go there. Or even close.

I will tell you what it is like to live as a mother to a child you know, scientifically, has a 50% (on a good day) chance of outliving you.

Things that used to matter just don’t anymore. And because of that, people who were friends prior to our daughter’s birth may or may not still be our friends now. It is difficult for those around us to know what to do with us sometimes.

I have days when I physically and mentally grieve. Sometimes, I am very aware of the trigger (it may be the day or the week that commemorates one of Bella’s myriad of surgeries), or I may have no idea. Regardless, I have to be very kind to myself on those days.

My husband and I have completely lost optimism. We have not lost hope, for that is supernatural, but we have lost optimism.

We’ve pulled in. Our world is smaller now when it comes to community and our daily life.  I cannot do Mom Groups anymore, and even attending church is a huge effort. I am just not able to interact the way I used to be able to and I so often leave those settings feeling absolutely depleted and often lonely.

But, look!
Look at this FACE.

 

This face is a reminder – to you and to me – admitting the very real pain and grief that life offers, of the fact that where our hope lies is just not of this earth! The God I believe in does not “save” people from heartache or sorrow or grief.

 

What He offers transcends it. 
It is this otherworldly peace that seeps in from my head to my toes that comforts me and reminds me that I can let go – that I can trust the Creator that there is no feeling, no guttural pain, that I am experiencing that He does not KNOW.
INTIMATELY.
And I can REST in Him.
I can rest.

And as I rest in Him,
I get the pure JOY of watching Him love on her.

My precious Bella.

I get to watch the miraculous take place.

So,

as Bella supersedes her grade level in reading and writing,
as her very tender heart empathizes with those around her,
as she loves on animals – real or stuffed,
as she giggles and KNOWS that she is adored by her parents,
as she shows courage that would put any superhero to shame,
as she thrives beyond ALL EARTHLY expectations,
as she reveals bits and pieces of her otherworldly relationship with her God,

 

this mother stores all those things in her heart.
Thank you, thank you LORD, for my Bella.

And Happy 10th Birthday, sweet girl.
We have a lot of celebrating to do.

 

 

 

**There is a book of my life with Bella being written. Stay tuned.  **