Author Archives: cdkuba

10.

My daughter turns 10 years old on Thursday.

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 pretty good chance of not 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.

 

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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. **

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A Week

It’s been a week since Bella had her procedure.

I’d love to say “time flies”, but I’d be lying.

Bella has not yet returned to school – our hope is that she will be back on Monday.

The reason she is not back at school is this::

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This is what Bella’s toe (the better of the two) looks like this morning. She just cannot go to school and risk getting it exposed to pretty much anything a 3rd Grader might encounter throughout the school day.

We are not unfamiliar to days/weeks away from school. We are able to adopt a bit of a routine and Bella’s teachers have always been wonderfully accommodating of us, allowing me to act as interim teacher to Bella.

 

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We even enjoyed a field trip or two.

Today, I even allowed Abeni to stay home so that Bella had someone to play with (admittedly, thus taking the pressure off me so that I might actually get some work done).

There was a significant highlight this week.

 

Abeni Joy turned FIVE!

 

 

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It is hard to believe that she is the exact age Bella was when we brought Abeni home from Ethiopia. And as so often happens, my thoughts and my heart drift to Abeni’s birth mother.

I find myself wondering if she is wondering about Abeni.

I find myself dreaming of a day when Ethiopian, among other, mothers no longer need to even consider relinquishing their babies in order to ensure their child’s survival.

This weekend, Abeni is having her first real birthday party – meaning, the kind where she is aware and excited to have her friends come and celebrate with her. We have found a fabulous preschool for Abeni and she loves being there, and they love her. It has been fun to plan that party this week and for all of us to have something to look forward to!

Abeni is JOY incarnate. She is fiery and stubborn. She is compassionate, always at the ready with a smile and a hug. She is animated with a brilliant sense of humor. She is unabashedly adventurous, and enthusiastic about exploring the world with me.

Something new happened for me personally this time around as well. Usually, over the past almost 10 years, there has been this personal mourning that occurs every time we are faced with some setback with Bella. I find myself retreating to this place of self pity – intensely and acutely aware of the loneliness that accompanies these setbacks. It accompanies me like a limb on one’s body.

For whatever reason, I have welcomed the solitude this time.
I have not felt like I SHOULD be with friends – that somehow the fact that I am alone is some sort of enigma – a social pariah.

I have been able to release that expectation.
And in doing so, there has been a sense of deep, deep exhalation for me.
It has not obliterated the loneliness that is permanently attached to being a mom of a medically fragile kid, but it has allowed me to show up in a way I was incapable of doing in the past.

I am grateful for that.

Stay tuned for Under The Sea birthday photos coming soon!

Home

We are home.

Surprisingly, we were only at the Surgical Center for about three hours total.
That is a welcomed new record.

As predicted, they did fully sedate Bella, which meant that she had to be wheeled – once again – through those horrific OR doors, without me at her side.

She cried.
I cried.unnamed-1

There are way too many of these moments that have taken up residence in my permanent memory.

As always, I think it is important to acknowledge where God not only showed up, but revealed His steadfast and enduring character to us::

* Our anesthesiologist was amazing. The young dad of twins, he listened to us. In fact, he asked Bella what she wanted. She told him. He honored her request. And by doing so, my daughter learned a valuable lesson about the importance of advocating for herself, making her needs known, and that she has a right to be heard. I am indebted to him for this.

* Once again, we had a phenomenal nursing staff. They doted on Bella, were gentle and kind, and one of our nurses was a kidney transplant recipient and understood some of the special needs Bella has.

* I made it through the day. Really – this is a big deal. I was not sure I could do it. It was the first time I had to do this on my own with Bella. We had a bunch of scheduling conflicts, so I had to go on my own. I honestly was not sure I could do it. I could not sleep the night before, and I am NOT a morning person. But I did it. By God’s mercy, I made it through. I am paying for it today, but Bella is not.
And that is what matters.

* Bella’s pain is manageable. This is HUGE.

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So, now what?

For the next 4-6 weeks, we will be doing foot soaks and bandage changes three times a day. Bella will be wearing flip flops to school for the next month and I now have the challenge of trying to keep her feet warm with her toes exposed. 😉

Our continued prayer is that we are able to stave off infection and that her toenails would not reverse to their former growth pattern.

Soon, it will be time to start dealing with the scoliosis, beginning with X-rays.

Sigh.

But for now, we are all taking a bit of a rest. We are regrouping, recharging.
Martin and I have a date night planned.
I cannot even begin to articulate how imperative date nights have become! 
((Aside::)) It is interesting to me how my ENFJ-ness is becoming more and more an INFJ-ness – whether that is because of all that we have been through with Bella, or just me becoming more comfortable in my own skin as I get older – not sure.

And we are preparing for Abeni’s 5th birthday on Monday!!
More to come on that, so stay tuned…

Thank you for your prayers, thoughts, emails, and for being
Our Village.

Toes Part Two

What a day.

Bella is scheduled for her toenails’ “redirection” on Thursday morning.

7:30am.

Normally, this procedure can be done in the actual doctor’s office.
Normally, the procedure lasts 20 minutes.
Normally, the patient pops some Tylenol and goes home.

Bella will go to the Surgery Center.
Bella will need a “dump” of antibiotics prior to surgery. A “dump” means a large, single dose of antibiotics to help stave off her propensity for infection from merely having anything opened/exposed on her body.
Bella will be sedated.
Bella will have I.V. fluids in order to keep her blood pressure above 110.
Bella will have to have a staff ready just in case of a complication.
Bella cannot have NSAIDS (ibuprofen), so she will need to be monitored post-op and prescribed special meds if inflammation is a concern.

It’s interesting. I live in this tension of never wanting to be that Mama looking for drama, and yet, my reality is often a bit more dramatic when it comes to my Bella.tension2

It seems that so often our nature is to repel coming anywhere near that space where tension exists. We just seem to innately want to steer clear of it.
It is as if we are fearful that we just do not have the human capacity to abide in that tension – that it will inevitably destroy us.

And it often becomes reduced to this idea of fairness.

I live in this tension. I have lived in it for almost a decade.

Aside:: Can you believe Bella turns 10 years old this year!?! Twice the age they told us she would reach here on earth!?!?

I, for one, have found something quite profound by living in this tension. I have realized that I am capable of more than I thought was possible, and yet, I have also found that I am not capable of ANYTHING and that the God I believe in is just as tangible, real, raw, authentic, and present as the fingers typing this.

I do not for one minute wish our experience on any other family – on any other child.

I do believe that living in perpetual tension allows me, no – compels me – to reach for understanding, for peace, for wisdom, for faith that goes way, way beyond that which presents itself before me or that which makes sense to me.

So, please keep us in your thoughts and prayers on Thursday.

And please pray the one drive-thru Starbucks is open.

Toes

Toes

Bella’s big toes are becoming a major problem.

We are now on the fourth infection in a row.

It looks as if she may need to have a very painful procedure done in which her big toe toenails are permanently redirected.

For Bella, as always, it will be a bit more complicated – most likely requiring her to remain in the hospital overnight in order to safeguard her from infection. Not to mention, since pain meds will most likely be needed for her, it will be important to closely regulate these as many types of pain meds cause stress to the heart and Bella cannot afford for this to happen. Her kid heart already works unbelievably and abnormally hard to support an adult kidney.

And. of course, there is the recovery. Days on end of not walking. Again.

So, can I just vent here for a minute?

I am pissed.
That is just the simple truth of it.
Why can’t it just be my toes instead?

Why can I not drink some potion from a glorious little crystal, Disney designed locket and take this on for her?!?

Martin and I both just get teary-eyed as we wonder why on earth our daughter has to endure so much.
And there has just been no reprieve. It just keeps coming.
I am not even capable of hoping that an end will be in sight.

 

And yet.

 

I am her mom. And I am a woman of faith.
I am capable of holding this for my Bella, knowing that my God holds me.

Please keep us in your thoughts and prayers as we gather information and make arrangements for Bella’s procedure.

 

Welcome

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I have started this blog as a  continuation of an old blog that I let drop exactly a year ago this month.

You can see it here.

It seems over the past year, I have resorted to snippets of updates and reports throughout various forms of social media. And I am finding that as I simplify my life, I just need one place where I can go and share our family’s story.

For those of you who personally know our family, I am asking that you please follow our blog. We need you. We need your support, your encouragement, even just your avatar at the side of our blog reminds us that we are not in this alone.

And so, here we go.

Together.

Thank you for being our village.