I have another daughter

I love the book Wonder. It's about a boy named August, who has a gene mutation that caused physical abnormalities in his face, and the various relationship dynamics in his life. There is a line from the viewpoint of Via, the sister, where she says, "August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun." This quote strikes me to the core because I wish so hard it wasn't true. But so much of our life and my work and even this blog revolve around this stupid disease.

Growing up, I knew a girl named Sarah. We ice skated together and went to the same middle and high school. We weren't friends but we knew each other. She was in the popular crowd. She wasn't the prima popular, but the wing woman and side kick. I had known of her for probably 11 years before I knew anything about her family. As a senior, I worked at a videographer's studio and was putting together a photo montage that Sarah's family had ordered for her graduation. Her younger sister has down syndrome. And I never knew it. I probably hadn't paid attention to who was part of her family at school events and she didn't tout it openly.

It makes me think of Via in Wonder when she starts high school and doesn't talk about her brother and even tells her new friend that she's a only child. It makes me think of my other daughter, Morgan. She's an incredibly bright seven year old. Morgan was probably four years old the first time we explained that all the doctors visits were because Kylie's heart is special and it doesn't quite pump the way everyone else's does. When she was a little older, we added that there are arteries in her body that carry blood and the medication Kylie takes keeps those arteries open so her heart doesn't get too tired. And that medication is different than vitamins.

I still remember the day Morgan asked if Kylie was going to die. She and I had been talking and I had to explain to Morgan that Kylie isn't going to get better (unless researchers find a cure in the future). And it was so painful to see that veil of innocence taken away from her. It doesn't help that so much of my Facebook feed has pictures of kids in hospital beds. We were watching a video today of a machine based CPR and her question was, "Will Kylie need CPR?"

I worry too much sometimes at the toll it takes on her. She's often so aware of my exhaustion and I can tell she goes out of her way sometimes to avoid needing things from me. And it's not fair. She didn't choose this; none of us did. But I can't take it away either. I read in a two separate books that during childhood, we develop coping mechanisms for pain, disappointment and trauma and they often become some of our most natural and powerful strengths. I feel like I see glimpses of that when Morgan becomes so self reliant and resourceful. She almost has a innate reaction of not wanting to be instructed on how something should be done. She has melded these traits into another natural talent she possesses.

She has an imagination that is beyond my comprehension. She can create realms and stories and just disappears into a world of her choosing. Even when she was little, she was the kid that would take pieces from each play set and put them together into a new story (which drove my organizational mind crazy) and I'm so glad I let her. And she's an incredible artist. She also reads three grade levels above her. I can't keep up; I just hand her the bag at the library now and say, "Enjoy shopping."

She is generous and kind. She always wants to buy things for people or give her money to her brother or help us pay the bills (we don't let her pay our bills). I want to, and need to, push against the natural gravitational forces that this chronic illness bears downs on me. I want to carve more time out to spend with this amazing girl because as she grows up, she's going to be unstoppable in whatever world she creates.

The best group of people you never wanted to meet

Community is essential when you are a parent of a child with chronic illness. I was so fortunate when my friend Sophia introduced me to my first PHriend, Monica. Monica encouraged me, hugged me and said "Welcome to the family."

At conference we had a time to get together in support groups. There was a group specifically for Parents of children with Pulmonary Hypertension. My friend Sarah said to the group, "This is the best group of people you never wanted to meet." And it is so true because being a part of that group means that you share with us a huge pain and suffering in your life. But I've also never experienced such a true belonging with a group of strangers than those parents. We live 100s and 1000s of miles apart. An online support group keeps us connected day to day. And conference gives us time together to celebrate, support, and grieve.

In another session, a parent said to use the online group to vent your feelings and get support. Take your emotions there. There is no need to spout that off into your children. It was such a profound yet simple statement. My PH child and other children have no idea the stress and pain I feel so frequently. And they have no business at this age to have to carry a burden like that. They know her heart is special. And that she takes medication to help it work like theirs. And that's why we go to the doctor so much. That's all they need right now. I have a community to help carry of the load of I-can't-keep-it-together-right-now! And for that I am extremely grateful.


The conference I attended was through the Pulmonary Hypertension Association (PHA)

She is Heard - Self Worth

My friend Jessica, recently called me to give my very first talk as part of her She is Heard movement. And I like to be prepared, so I wrote it out. It was to a dinner table of nine amazing women on the theme of beauty and they all shared so many wonderful pieces of wisdom that night. I was truly honored to be a part. Since I had already done the leg work, and didn't die upon giving my talk, I thought I'd post it here. Enjoy!

I'm kind of an extremist. Not the adrenaline junkie, jump off of cliffs or kayak down rivers type of person. I'm more of an emotional pendulum. An all or nothing personality. And that's a really good thing in some things. Jesus...he's either everything to you or nothing. Marriage...committed or don't bother. Drugs...don't do them!

But it's not such a great thing with your self worth. If you do you're either all that and a bag of chips, rather arrogant. Or you're lower than the ants and worth nothing. I have a degree in the latter. A proficient self-depricator. And that has been a big part of my current journey learning about self-worth.

When my self-worth comes under attack and I allow shame to overcome me, I try to protect myself through judging and blaming. Most of that judging and blaming is directed internally at myself. That internal wounding happens in the things we're afraid of, the things we fear. Where it strikes me deepest is in my fear of loneliness.

I remember being in elementary school and climbing to the top of this metal ladder structure (singing The Little Mermaid's "Part of Your World") and just wondering "Why don't I fit in?" "Why am I so different from everyone else?" And shame uses my self-deprication to tell me that my loneliness is my fault.

That I'm not enough. I'm not extroverted enough. Not adventurous enough. Not involved in enough. Or I'm too much. I'm too emotional. Too deep. Too quiet. Too granola.

And fear perpetuates a fear-reality that becomes a twisted truth-lie: I'm destined to be alone.

But often the things we're afraid of drive us to beautiful things when we put that fear in the hands of God. Because God said I have worth. And He and I fought about it. Because if I have worth and are worthy of love, I'm worthy of worth and love from those He created and loves and gave worth.

And we fought more about it. And I landed on two things which became evident after I found myself serving on a small hospitality team at my church, Mosaic.

The first is we need to have a positive perspective. In the hospitality kitchen, I'm the only mom (98% of the time). From my self-depricating standpoint, I'm a lone wolf. I'm not like anyone else. I'm stretched too thin with commitments to my family or not available enough. I'm not young enough. This isn't a team for moms. But a positive perspective says that I have something that would be lacking if I weren't there. There's just something comforting about having Mom in the kitchen. Regardless of if she can cook (which I'm decent at doing), but Mom can just bring a grounded peace in the kitchen space.

The second is that we need to step into courage. My default when I'm afraid or shaming myself is to shut down, withdraw, run away and be silent. So my courage is to stay put, to open my ears to listen and my eyes to be observant. There were weeks where I didn't want to drive there, or maybe I'll just slip out to the bathroom, or I'll just focus in on my task and be lost in the hustle. And those weeks, showing up was my courageous act. And at the end of the day, it's enough.

When I close my eyes and step into courage with a positive perspective God silences the fear and replaces it with hope. And hope has given birth to love. Love for myself and for others. When you have the courage to embrace the you God believed you to be when He created you and the positive perspective to start seeing your uniqueness as strengths, you cultivate a knowing of your self-worth.

The book of Ephesians says we are His masterpiece. An artist loves His masterpieces. And every masterpiece is unique. So when you have a knowing of your self-worth, work at becoming aware of those things that you're really good at, or that make you different from everyone else. Like for me: I'm really good at hugging. It's a strange compliment I get a lot. But it made me stop and think that not everyone has little ones that run and hug them every morning. Or wake up next to someone who will hug them. But in that kitchen, there is always someone who will embrace them with love and worth.

And it's amazing how you start to see how God uses those uniqunesses to fill needs and create beautiful things.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Remembering to Breathe

Two weeks ago, I was beside myself in tears as I thought about Kylie's upcoming cardiologist appointment in December where she will have an echocardiogram to get a new measurement of the pressures in her lungs.

It will have been 5 months since we chose to not put Kylie on medication, but rather to attempt to fix her persistent pulmonary hypertension with natural healing. God has provided miracle after miracle in her and our lives that meds just didn't seem to be the right puzzle piece in this part of her masterpiece. There has been so much inside-out healing in our family this year that we made the decision to embrace the holistic healing path in a search for the root cause instead of treating symptoms.

We saw Heewon (our nutritionist) last Saturday. She couldn't find the bacteria in Kylie's body. It had begun in her lungs, moved to her blood, then liver. Now, it's gone. Gone. I had the biggest swell of joy. I was filled with so much gratitude I nearly started dancing and hugging her. Luckily, keeping Kylie from grabbing every vial in the office is a good distraction from over-celebrating :)

What we can't know yet is if this bacteria was the cause of her hypertension. So we still walk in the unknown.

And that's a scary place to be without faith and wisdom, which I pray for daily. I am not God. I am not the one who knows what is best for Kylie and directs her in the ways she should go. But God has entrusted her story to us. It sometimes feels like He has entrusted me with much when I feel I have not proven myself with the little. But I have to remember He qualifies the called; not the other way around.

And I'm not alone in this. I was slightly taken aback when Ethan mentioned he wants to be there on Friday when Kylie is tested. It was a thought that had not even crossed my mind. I was like, "You have work." But I had to breathe and let it sink in that we made these decisions together. He is her father as much as I am her mother. And if one of us feels the weight of foolishness (that's mostly me), the other can lift the fallen one. We walk together through this.

I wrote down the following in a journal to get it out of my head at the time:
"The decisions I made, I made them out of faith and love. I don't know if they are right.

In three weeks, I will stand in front of a doctor, an expert in a field that makes my understanding seem smaller than a grain of rice.

I will hold my breath as I present my daughter. It will feel so much weightier than a simple measurement reading. It will feel as though my worth, my beliefs, my choices will be weighed and judged."

And the comforting voice of God reminded me. Breathe. You are my child. Your worth is in me no matter how foolish the world thinks you are, how foolish one man thinks you are.

And then I saw the greater narrative. I thought about the end of time when we stand before our God and it will feel much the same. I saw myself in tears saying, "God, I don't know if the choices I made in my life were right or wrong. But they were made out of faith and love." And I won't know what will come through the fires of God, but it doesn't mean I don't keep pursing love just because I may not understand in this lifetime.

God loves correction and refinement. He loves to chisel at those who seek him. Love is made more perfect in Him. And perhaps the more I love, the more I may understand. Or not.

I've been reading Brené Brown's books Daring Greatly and The Gifts of Imperfection. They have brought about so much reflection and healing about the shame I heap on myself. There is a beautiful line in her book about keeping a list of names of whose opinions truly matter; it should be a short list. And that has been a hard practice for me to incorporate into my life because it doesn't mean that others' opinions don't effect me. They just can't define who I believe I am or the me that I and those closest to me love.

So even if Friday's results tell me that she is no different than she was three or six months ago, it does not mean we made a wrong choice. There was a bacteria in her lungs and it is no longer there. She is healthier because of the choices we made. We made a choice that brought about good even if it isn't the result we hope for in the end.

Another thing I'm learning from Brené's books is to shut down foreboding joy. I refuse to not make hope a big deal worrying that I may look foolish if I'm wrong. I refuse to not press into the discomfort of being proud of the choices I made. I will say I hope with abandon that the doctor will be amazed and she is healed and healthy. 

And if I'm wrong I will grieve with those who love me for those choices because I was courageous enough to let them know I had hopes and expectations. But I will not dwell on that possibility until it is a reality. Hopes met or unmet, Friday will come and go, and we will find our way with our God and our Tribe from there.

So we are praying for Plan A. We want her future to be one of health and joy. Please join us in praying for our Kylie-bear.

Yes. I'm a realist in transition hoping and learning to be an optimist.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Brené Brown is a researcher and storyteller. Her blog can be found here.