Sometimes...

We recently returned from our twice-a-year trip to Lucille Packard Children's Hospital at Stanford. As many of you know, Bella's health the past six months has been laden with sickness, with the coup de gras being a kidney infection.

So, I felt a bit more anxiety than normal this trip. It is the first time we have seen Bella's team since the kidney infection, and I could not help but wonder what damage may have been done.

It turns out that indeed, there has been damage, but not because of the infection necessarily! Let me explain a couple of things about pediatric kidney transplantation.

1. Bella's toxic kidneys were removed and replaced with one adult kidney.

2. This means, a majority of Bella's organs, intestines, etc. were literally re-arranged in order to accommodate an adult kidney (she was 14 mos. when she had a transplant) which is now located in the front of her torso, versus the back where we all carry our kidneys.

3. Kidneys do not regenerate. Once they lose function, it is permanent. The shock of transplantation coupled with a child's heart's inability to pump the proper flow of blood to and from an adult kidney caused permanent damage from the start.

4. Bella's anti-rejection drugs are a Catch 22. They will be a part of her daily regimen for the rest of her life in order to suppress her body's natural desire to reject a foreign kidney. At the same time, a side effect of these very rejection meds is that they are toxic to kidneys, thus very slowly killing off the kidney. This is why her medication levels are monitored so closely and why we have so many blood draws.

5. Having an adult kidney as a child, trying to pump enough blood between a child-sized heart and an adult kidney, having your inner parts not be exactly where they are meant to be and supposed to be means that Bella tires faster, needs more restorative time, needs more nurture, and just needs more period.

Upon review of Bella's kidney, it has come to our attention that Bella's kidney is losing function, experiencing more toxicity from the meds, at a faster rate than we would like. So, we have adjusted Bella's meds as the first means of combating this and hopefully slowing it down. If this does not work, well, let's just not go there yet, shall we?

As you can imagine, this news was very difficult to digest. And, I found myself grieving a bit. Let me explain.

When Martin and I got married, part of our vows were to honor the passions and callings in one another. We planned on spending time living in Martin's home country of the Czech Republic. We planned on me working and traveling on behalf of the vulnerable. And of course, having a family was included in all of that as well.

Then, Bella was born. Our world was turned upside down. And all of the sudden, those passions and callings for me (and Martin, too) were put on hold - indefinitely.

Would I change anything? Absolutely not. Do I sometimes grieve that I am not able to live out right now some of the passions God has placed on my heart? Absolutely. And sometimes...

sometimes I grieve more than others.

It also makes me grieve for Bella. She is starting to understand that she is "different". She is starting to work out all of the horrific trauma that she experienced as a baby. We, as a family, have started to receive insensitive comments from people. And that. Well, that just brings out the mother lion in me.

At the same time, and ever more strongly, I feel a sense of resolve. I feel more passionate than ever to ensure that my daughters feel that their parents think they hung the moon. I feel more convicted about encouraging my daughters in what they are gifted in, instilling them with a sense of purpose. I feel more passionate about ensuring that my daughters become beautiful, compassionate, Godly world-changers.

I am woman.

Hear me roar.

"The Most Wonderful Time of the Year?"

The Pandora Christmas station is playing. Martin is out picking up Bella from school and Abeni from a friend’s home. On the fridge is Bella’s Christmas countdown. 11 days to go.

I wish I felt “festive”.

I wish I felt filled to the brim with “Christmas Cheer”.

I wish I could sing “It’s the Most Wonderful Time of the Year”

and mean it.

This has been one of the toughest few months for me in a very, very long time.

For one, Bella came very, very close to rejecting her daddy’s kidney that was transplanted in 2005.

Second, I lost a dear friend to cancer.

Third, I sliced right through the tendon in my right pinkie finger and have been in some pretty intense pain.

Fourth, we have to foreclose on our lovely home.

And there is other stuff. It seems that so many people in my life are in very, very difficult times as well.

How I wish I could tell you that I am doing sooo awesome. But I can’t.

Can any of you relate?

The thing is – I learned quite a while back that there is freedom in not being enslaved to circumstances.

There is freedom in not always trying to control my world in order to achieve maximum happiness. Or security. Or stability.

That is where my Faith come in.

Is it a crutch? You bet it is. It has kept me from falling flat on my face (or other regions) more times than I can count.

My faith, as has already been tried and tested, allows me to look ahead with Hope.

My faith allows me to just feel like crap sometimes in the midst of it all.

And my faith is the stuff from which Christmas is made of.

I am going to try and hold on tight to that.

Reconcilation

It is the beginning of November and I find that I am pulled in a million directions. There are fundraisers for school, homework, play dates, dance lessons, doctor’s appointments, small groups, and on and on and on.

And in the midst of all of that busyness, I tend to get very introspective. I tend to find that my mind demands to be recognized, whether I deem there to be time for it or not!

And in that vein, I have been thinking a lot about a certain path that I was put on in the early 1990’s. A path that lead to the inception of a lifelong journey that seems to continue to have endless spokes originating from one simple, yet profound word:

reconciliation.

For me, especially in the 90’s, this word was most often, but certainly not limited to, racial reconciliation. I found myself immersed in groups like Multicultural Student Fellowship, International Student Fellowship, SOAR (Students Organized Against Racism) and I even received a Masters degree in Multicultural Education and Social Justice. It was, and has continued to be, a huge learning curve for me.

And now, here I am. I am the wife of a Czech man and the mother of an Ethiopian daughter. My family could not be more multicultural, unless, I was Angelina Jolie.

And in lieu of all that I learned and continue to learn, I am noticing a pattern that is a bit disconcerting to me. And our dependence on social media does not help matters one bit.

First, let me share a story with you. One that is really not easy for me to share, as I am embarrassed about it – to this day.

When I was in graduate school, I had the privilege of meeting and spending a lot of time with a group of amazing individuals from Kenya.

One night, we decided to all pile in my car and go to a movie. As we were driving to the movie theater, we were cut off by a car that had a huge sticker on the back of another country’s flag. Before I knew it, this is what came out of my mouth:

“Stupid foreigners!!!”

Yep, I said that. Me. The woman who at the time was co-leading the SOAR group. Me. The woman who had already devoted a decade toward the pursuit of racial reconciliation. Me. The woman getting her MASTERS DEGREE in Multicultural Education and Social Justice. Me.

Well, the silence in the car was palpable.

And then something ethereal happened.

Laughter. And grace.

My beloved Kenyans did NOT let me get away with that comment. Many conversations ensued in the weeks ahead. A lot of forgiveness was asked and even more was given. And most importantly, not one of those dear friends gave up on me, turned their back on me, wrote me off, judged me, and they did not gang up on me and tear me apart. They knew that I am not perfect. They know my life story, where I come from, what my life’s experiences have done to help my paradigm shift in a positive manner and what it has done to hinder it.

And most importantly, they knew and know today that even in my longing, my desire, to be a Woman of Faith who feels called to racial reconciliation, to social justice, to advocacy, to deep and authentic friendships among different races, I am human.

And I will blow it.

As a result of all of this, I get a bit concerned. As a Caucasian mom of an Ethiopian daughter in a predominately Caucasian small town, I get looks. I get comments. I get stares, some quizzical, some disdainful. It can be hurtful.

Everything in me wants to pick up my cell phone, jump on Facebook, twitter to the world about how wronged I was. I want to call out the “racist” individual who wronged me and my child! I want to incite a mob response, getting everyone I know to respond and comment as well about how awful my experience was, how ignorant people are, how enlightened I AM in comparison.

And then I believe God brings me humbly back to that event in the car. With the Kenyans. On the way to the movie.

And I find that, while I am a huge fan of being truthful and letting an individual know that their comment was hurtful and that he or she might want to take a moment and consider why he or she said what he or she said, I am finding that

Grace and Truth make for great sisters to Reconcilation.

We all are human, therefore we ALL have prejudices.

Can you imagine what would happen if we offered people grace more often?

This idyllic and very human woman who has been the recipient of such grace is hopeful at that thought.

The Day Has Come

It has been over six years since Bella was born, since our life took a very drastic and unexpected turn. It has been over six years since A Sadness entered my soul, and we have come to co-exist quite peacefully.

So much pain, so much sorrow, so much trauma.

As an adult, we are able to work all of that through. That is one of the perks of being an adult.

For Bella, that is not how it works. Her body, brain, emotions, etc. are not fully developed, and due to the amount of trauma all of the above have been through, so much was repressed.

Lately, Bella has been asking about "what happened to her" - why she takes medicine, why she has this big line down her belly, why she was in the hospital, why so many pokes all the time.

We were warned this day would come, and we received confirmation today by a trauma specialist, that indeed it has. Bella has begun to act out in response to the trauma she experienced.

Bella has begun to work through her trauma, which today alone, resulted in three tantrums.

I am fighting tears as I write this. I admit that I hoped this day would NEVER come. I am not sure I am ready to help my precious Bella work through this trauma. I am nervous that the desire in ME to have a tantrum in response to my daughter's suffering will come out! I am nervous that she will suffer emotional pain and I cannot fix it, make it go away, or take it on myself for her.

So, our family begins a new journey. And what a sense of humor God has in the journey beginning a week before school starts.

But this is what I know.

I have watched with my own two eyes numerous palpable, undeniable examples of God working in the life of Bella, and in my life as a result. I have NO doubt that the God whom I serve, adore, wholeheartedly trust,

has got this.

And I believe He has impeccable timing. I believe that He wants our family to work this through with Bella now for a very specific purpose which may or may not ever be revealed to me.

So, we ask you to join us in prayer in the following:

1. That our "team" can find tangible ways to help Bella help herself.

2. That Martin and I would be united in our parenting and patient, gracious with each other.

3. That Martin and I can get some time to renew ourselves in the midst of the marathon ahead.

4. That through all of it, we can shower Bella with love, patience, being slow to anger or frustration.

5. That Bella would receive deep, lasting emotional healing.

Thank you. We will keep you posted as this leg of the journey continues.

How Time Flies

A week ago, we returned from yet another voyage to Lucille Packard Children's Hospital. This trip was a bit different than those prior for two reasons. One, I had surgery 48 hours before we left, and two, Martin went with me (and mom caravaned down with us after helping with the girls during the surgery).


Our plan was to enjoy a vacation, of sorts, with a little clinic mixed in, thus hopefully distracting Bella from the main reason for our Bay Area visit.


And, how I wish I could say that it worked beautifully.


But - let's not get ahead of ourselves.


The good news is that Bella is thriving - and I do not ever get tired of saying that. Our nephrologist said, as we were preparing to leave, "it is extraordinary that we have not seen you a lot more frequently."


It is extraordinary. It is miraculous. It is a very real and tangible example of how present God is and how He never ceases to surprise us with joy if we allow Him to do so. And even as I type that previous sentence, I must admit to feeling a hint of doubt, which quite honestly, stems from a form of "survivor's guilt".


I have dear friends who lost their son to cancer in between Bella's birth and her kidney transplant. Whenever I look heavenward and and inhale thankfulness to God for Bella's life, for sparing her when there is nothing scientific that allows for her to still be with us, I also exhale remonstration as to why God took Zach home. It is a conundrum to me. It will most likely never be answered in this lifetime.


And yet, one thing of which I am certain, there is no better way to live than in the friction between the explicable and the inexplicable when it comes to faith. It is the perfect formula from which humility and courage, hope and contentment can take root.


So, back to our Bay Area visit and the expectation versus the reality. Because Bella has been so sick, we never experienced the "terrible twos", or "threes", or "fours"...


but we are IN it now.


There is no question that part of what we experienced with Bella that week was her way of working out all the tension, fear, and anxiety that comes with these clinic visits. And I am sure her highly intuitive self could pick up on her Mama's tension around it as well.


And yet, it did not totally subside once we returned home. In many ways, we are glad for this stage, as it proves to us once again that Bella is thriving - she is feeling well enough to be able to push back, vie for her independence.


And at the same time, having a child who goes through a stage meant for a younger age at an older age means Martin and I are in for a unique challenge. We are fortunate to have family friends whose professions are a perfect fit to come alongside us to teach us how to lovingly guide Bella.


We have said it before and I will say it again:


Thank you for being on this journey with us.
Thank you for showing us what Love looks like incarnate.
Thank you for holding up our precious Bella in prayer.


Please enjoy this video below of Bella being, well, unabashedly Bella.


-Carrie

Bella Update

I have been trying to stay off my computer a LOT more in honor of Lent, but just wanted to thank you all for your prayers regarding Bella, and to let you know what we learned.Bella had her bi-annual clinic at Lucille Packard Children's Hospital (LPCH). When we go down twice a year for this clinic, we are asked to set aside an entire week for any clinics, labs, hospital stays as needed. Bella was due for a biopsy, so we were aware that we very well could end up admitted.Clinic turned out to be better than we could have imagined. The Nephrology Team was very pleasantly surprised with Bella's lab results, how she looked, and all the benchmarks she has hit. It is one of the very few places in life where one is happy to hear "we are so glad we have not seen you here much!". Our social worker told us how rare it is that we have not spent a LOT more time in the hospital.

One very positive outcome of our clinic is that Bella gets to go to every six weeks for blood draws instead of every four. This is HUGE as she has very weak veins and blood draws have to come from her hand (below her knuckle) instead of her arm. They are very painful for her and her hand is very sore afterward.Another positive outcome is that a biopsy has been delayed indefinitely.

There are still some areas of concern. Her blood pressure is low We will be monitoring this more closely than before. It is very stressful on her little five-year-old heart to pump blood to and from an adult kidney.

We are also entering a more common season for rejection. Parents and kids can get more laid back about the intake of fluids, and we need to be very diligent about this in order to avoid those early stages of kidney rejection. Bella cannot go anywhere without a water bottle in tow.

We were reminded by the team that Bella will go into rejection at some point in her life, and to take those early warning signs seriously. We were reminded again of how susceptible she is to certain types of cancer, such as skin cancer, and others I honestly can't remember at the moment.

We learned interesting things. For example, Bella needs to always have a bike with very wide handle bars so that when they are turned sideways, they go around her torso and do not directly lead to to an impact with her kidney (which is now in front - instead of the back - of her stomach). Who knew?!?

So, thank you for your thoughts and prayers. Thank you for the support you have given our family.

Haiti

is breaking my heart.

I cannot stop thinking about it.

I find myself in prayer often throughout the day...especially on behalf of the orphans.

I have friends who are on their way there now, or are already on the ground. I have friends of friends bringing their sons and daughters home from Haiti.

What more can I say?

I keep coming back to Jeremiah 31:13b

"I will turn their mourning into gladness;
I will give them comfort and joy instead of sorrow."