Being Bella's Mom

Being Bella's mom means I live with fear.

I awake every night, place my hand across her chest, to ensure that she is breathing.

Being Bella's mom means I live with the difficult choices I have had to make.

I know that in doing so, people will not understand and that can be lonely.

Being Bella's mom means I live with permanent heartache.

I know that, with our current medicinal science, I may someday have to tell her that she cannot bear children.

Being Bella's mom means I live with sheer terror.

I know that it is quite possible that I could outlive her.

Being Bella's mom means I live with sorrow.

I know we will lose our house, and perhaps experience financial ruin, due to her outrageous medical costs.

Being Bella's mom means I live with disappointment.

I know that I can never move my family overseas as I would have loved, due to the lack of her immune system and the proper care.

And yet...

Being Bella's mom means I get to experience pure joy.

I know what it is like to behold a miracle.

Being Bella's mom means I get to experience raw Faith.

I know what doubt looks like, and I know a God who can handle it.

Being Bella's mom means I get to live in the moment.

I know what it means to truly take nothing for granted.

Being Bella's mom means I get to carry another's burden.

I know what it is like to be loved and cared for by a village, and I will do everything in my power to do the same for another.

Being Bella's mom means I have Hope.

I know that there is more to life than this - on any given day.

Being Bella's mom means I get, well, I get what really matters.

Period.

Just from witnessing her smile.

40

I will sing
sing a new song...


At the end of this month, I will turn 40 years old. Huh. Wow.

I am going to be honest with you.

I am really okay with it.

In fact, I am kind of excited about it. And I will tell you why.

For one, I have been very fortunate to have had phenomenal mentors in my life. These women were where I am now in life when they mentored me. One woman was starting to pursue her doctorate - with four kids. One woman was launching her music career in L.A. One woman had become an advocate of Ethiopian orphans, and started working in advocacy for deaf children.

And my mom - started a non-profit for women at about the same age as I am now - and well, it has become more than she could have ever hoped for or imagined. And here I am - having just launched Someone's Child and it is already moving faster than I can keep up with!

And because I allowed these women to speak Truth into my life in my twenties and earlier, because I took risks and decided early on that I would live outside of the box instead of spending all my time and energy constructing the perfect box, I can honestly stand before you now and say I have no regrets. I am very grateful for all the people I have come to know and learn from, for all the places and countries I have visited or lived in, for all the education I pursued, for all the hardships I have endured.

I am grateful, that through these life experiences, God refined and transformed me and continues to do so. I have learned that people are way more important than one's pride. I have learned that being a truthteller and being strong must be coupled with grace and mercy. I have learned that it is healthy to avoid toxicity and drama, and to cling to encouragement and non-competitiveness in one's relationships. I have learned that my voice is powerful - and it is okay to embrace that, and not try to squelch it for fear that it might offend or be "too much" for people. I have learned the joy that comes from giving one's life away in the pursuit of advocating on behalf of another. I have learned to be comfortable in my own, unique, beautiful skin.

So, as the 40 is fast approaching, I find myself often humming one of my favorite songs, U2's "40" based on the Psalm. And this is how I plan to embrace this number, this season, not as an ending, but as a beginning.

I will sing...
sing a new song

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.