Living with ups and downs

Two years ago today our Kai Kai went home. The memories of March 2014 have been continuously swirling through my mind these few weeks more present and intense than other days.

As my heart processes these memories I seem to only see those moments I wish I could have been there more for him. There is one moment when we were transferring him from PICU up to the floor where he would pass away and he was trying to respond – we told him look Kai, the sun is out, and I remember he tried to look towards it. We saw him move and turn towards it, but he couldn’t open his eyes, he couldn’t wake up all the way. I wish I had thought in that moment to tell him I loved him. Maybe I did, but I don’t think I did. I was just trying to see if he could wake up, or understand what was happening to him. I know that I never, ever could have loved him perfectly and that I would always make mistakes, but it is hard knowing that I fell short so many times — I remember saying, I will make this up to him. But, I didn’t get that chance.

In my moments of disbelief I often turn to the pictures I have of Kai Kai and to the videos so I can hear his voice. I came across this series of pictures below. I saw it just as I was thinking to myself how do we keep running this race when it feels like each day our hearts truly can’t do another lap? We all have dreams and sometimes those dreams don’t turn out the way we had hoped. We wonder, what does this mean? What do I do now?

It isn’t the end. I believe we’re called and are given the strength to still live a life of true joy and purpose even if it is bittersweet. This life isn’t about getting everything we want, and I’m learning about what it means to accept and live with the impact of this loss while trying to learn how to keep a wounded heart still open to the possibilities of what this path may bring. I can’t change the past and rewrite this story, but I am praying and hoping that this suffering can be used for good.

As you’ll see below, in all of these pictures Maya is crying like crazy – Maya had that tendency a lot in her first few months. I think we all have that part of us inside that we wish we could just cry and scream like that every day so people would know that we hurt, we are angry, we are sad, and this isn’t what we want. And then you’ll see Kai, he starts out stink face and ends in joy and I think that pretty much sums up how maybe some of us feel when all we want to do is cry until we get what we want but we realize that this isn’t how this life works. We must work through this and accept it, and we will eventually get there – and we don’t have to do it alone. God truly gives rest to the weary and provides community for each of us to take turns lifting each other up and leaning on each other in times of need.

Kai Kai we miss you more than we can ever express and we love you more each day. The sun was so bright today and I hope you saw your little sis drawing her “game” for you with the many colors of chalk. Love you Kai monkey. Love you forever

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The Stink Face. It’s ok, we all have one from time to time.

Sometimes you just have to laugh amidst the crazy.

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Proud brother.

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We all need a little love.

It’s National __________ Month

September is national childhood cancer awareness month…. It’s also national Hispanic Heritage month, national poly-cystic ovarian syndrome month, national Hodgkin’s lymphoma month, national suicide prevention month, national uterine cancer month, national thyroid cancer month, and the list goes on and on. Have you ever seen this poster? cancer ribbonsSo many colors, and this is just cancers. It doesn’t include ribbons for abuse, infertility, depression, anorexia, paralysis, heart disease, diabetes, hunger, living under terror, poverty, discrimination, blindness, apathy, loneliness….

Every single person has a story.

I’ve been thinking for a while what/if I should post anything during childhood cancer awareness month…. What could I add? What should I add, if anything? It has always been hard for me to say, “no guys this, this is the most important thing in the world”- I want to advocate for everything, because I don’t want to lessen someone else’s story. So I write this with a humble heart and just share one story among many because maybe there is a reason for someone out there to see this story.

Childhood cancer is the leading cause of death by disease of children in the U.S., and worldwide a child is diagnosed with cancer every 3 minutes. But, it’s more than statistics. It’s a human issue. It’s part of our broken world and it hurts our hearts and it hurts these children’s bodies. It’s one of those things that can be hard to imagine until you see it.kai post surgerykai sick

kain in PICU susanbeautiful kai 03.15.14

I wish it didn’t exist. I want there to be cures. We pray that God will guide us on how to use Kai’s story for good, to help others. But, I know even if there wasn’t cancer, there are still all those other colored ribbons, the national ____ months, and those struggles that don’t have colored ribbons or months.

I know what you’re probably thinking….. man I wish she had posted a Debbie downer post alert before I started reading, but I don’t mean to be. Yes, these pictures of Kai pain me to the soul, the cancer hurt Kai more than I’ll ever know, and it has scarred us for life. But, that cancer is gone. It can never, ever hurt Kai again. And guess what, more people love Kai than ever before. I love Kai more and more each day – so take that cancer! This isn’t your month or your day or your second. This is actually about hope, love, and perseverance – it’s about us recognizing the humanity in each other.

I kept thinking wow, there are so many months and markers for struggles, why is this? For awareness. We want/need people to see, to ask – what is that for? I think maybe in part it’s because we’ve forgotten to spend time and have courage to ask “what’s your story?” and it’s as if we almost need these ribbons and t-shirts to remind us, hey wait a second, maybe (most likely) there’s something going on in their life I should ask about.

That hit me like a ton of bricks.

I don’t want us to need ribbons or national months or days (and please, please, please know I am not saying there is anything wrong with awareness days or ribbons or any of that!!!). Maybe we can learn to be more aware, more present, and open our eyes and try to really see the people placed in front of us. When Jesus was asked what is the greatest commandment … He responded simply: love God with all your heart, mind and soul, and love our neighbors as ourselves. Simple. As. That — community, neighboring, loving others as ourselves

We see our own ribbons, our scars, our stories, but how can we use these awareness months/days more as a reminder of our shared humanity?  Some have the gifts of power, influence, or financial capacity, others have knowledge and skills, but we all have heart. I urge us to not wait to see a ribbon or tears to make us act or to even ask the simple question “are you ok?” But, maybe in recognizing our own struggles and our desire for love and comfort, we can remember our call to help one another on this journey.

We have never been the most photogenic family and the photos we have of the four of us as a family are less than a handful. The one below is our last family photo – I’ve felt so strange sharing it. But this photo, yes it shows great pain, it’s not “pretty”, but it’s our life – and buried beneath tense faces and forced smiles are hearts that ache but also contain love that cannot be destroyed, and so I love this, because we were once all physically together, and we will always be together in our hearts.

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kai on the carousel

 

 

To Kai on Your 4th Birthday

I’ve gone back and forth on if I should post this — I worry alot that it will seem that I am trying to get attention or sympathy through these posts and I don’t want that to be the message. I often question why I post, and truthfully it’s because I hope somehow, some way it helps – helps someone else not feel alone in similar emotions, helps other maybe understand more about a situation that maybe someone else in their life has encountered, and also offer hope and a reminder that we’re all in this together and we all each have our story. So I pray that those intentions are what come across.

Today, June 27, 2014 would have been Kai’s 4th birthday. We have missed him so much today but have much to celebrate in this day.

Dear Kai Kai,

I can’t believe it’s been 4 years since you were born. You were so tiny and I couldn’t believe God had actually entrusted me, the non-maternal instinct girl, with the precious gift and great responsibility of you. I wish I could give you such a big hug today to wish you a happy birthday and take you to the park and run, jump, and play with you and Maya. I can only imagine how adventurous you would be and then your baby sister would be trying her darndest to keep up with you. I often try to imagine how the two of you would be together – in my head it’s the best mix of the two of you keeping each other on your toes, annoying each other like only siblings can, and then fiercely protecting each other no matter what.

Kai Kai – I miss you so much and I’m so so sorry that I do not know how to celebrate this day with you not here. This day should be celebrated – it was the start of your life here, the day you changed everything. And I am so thankful for that day. I am joyous of that day. It’s just that you should be here so we can celebrate together. I want to see how you’ve grown up and not just imagine it. I want to talk to you, hear what you think, see what you find funny, and learn more about who you are.

It’s weird Kai, sometimes when we’re doing something, usually it’s outside and the sun is so bright, I just “see” you – and it’s like I see you as you would be now and I’m not even trying to imagine it. You’re just there. Little skinny legs, a less pronounced Buddha belly, running so fast. You’re always leading the way and I don’t see your face. Kai Kai – I wish we could be allowed to just have you for a second just to give you a hug on this day – I know it wouldn’t be enough for me, but oh just a second. One second more. But I know you’re ok. You’re better than ok. Maybe it’s just that we’re not ok without you when the distance between heaven and earth must separate us.

Kai, I celebrate your life, your amazing life that you lived in your short time with us. I wish I could have loved you better, not been such a broken human, but please know how much I love you. I don’t know why it matters that I want you to know this because the love you now know from God is all you need. Maybe I just want to tell you that I lovIMG_3317e you so much because it’s what will always connect us, it’s what does connect us and your dad and I will always keep loving you in our imperfect ways.

Happy, happy birthday sweet Kai. Four years – you’ve been part of our hearts for four years and you know what, that’s what we have to celebrate today – no one can take that away. We love you Kai Kai, today and forever.

Be brave, Be courageous

It has been heavy in the stories of loss these past few weeks… I don’t know if it’s connected, but I have been struggling more so than usual for the past month in my grieving of Kai. I’ve been tempted to write, but each time I start, I hear of a new tragedy, learn of a friend grieving, read a stranger’s words that echo with as much familiarity as the thoughts that race through my head, and I feel unworthy to say anything. I am not unique.  I am not special. Every single person has a story. Every person has triumphs. Every person has sorrow.

I’ve been thinking so much lately and feeling my heart so tangibly ache with conflicting emotions: each beat feels the raw pain of this loss but somehow simultaneously it fills with love and compassion. In hearing about stories of loss lately, the sadness, the disbelief, the questions of “why” hit you like a sucker punch to the stomach.  But you also see the outpouring love, giving of self, and compassion that are undoubtedly stronger than the horrible circumstances – even if it can’t take away the pain.

People slow down, people set aside their differences (and their phones ). Our hearts are broken for those in sorrow and in turn our hearts grow bigger. I mentioned before that when we lost Kai, my heart was broken, but it truly has become broken open. It will never be mended on this earth – the longing for God and his redemption, the yearning for a restored home, and the hope to see my son once again pull my eyes upward and the wound is a tender reminder that we can have hope.

I wish it did not take horrible things to happen for us to open up our hearts. I’m as guilty as anyone. I wish I knew how to love better, help more. Sometimes it seems overwhelming, but it could be so simple: to pause in our “busy” lives, to serve, to give, to not be afraid to take a chance. I can’t speak for all of the different challenges and sorrows each one of you feel, but in my humble opinion, I think it may always be ok to let someone know you care, that you’re walking with them on this journey. Even if you’re far away and especially if you’re right nearby…. Ask them how are you today? Tell them you have been thinking of them, praying for them. Don’t be afraid to “name” the loss.

The other week when I was having a tough time and could not express one word to explain my withdrawn silence, Shawn said I know that I understand the pain you feel, but I don’t understand how you’re feeling right now. He then later sent me this blog post in which a stranger articulated so many of the things I cannot describe as if she had peeked into the thoughts of my mind. One part struck me:

“On the days when no one but you mentions their name, I am so, so sorry. Say their name bravely. Know that they are still real, they are still here, and you are still their momma.

Kai never leaves my heart and soul, but I have/want to say his name each day no matter what – it means something that I can’t explain. Maybe it’s because he’s my kid and I should be saying his name a ton: “Kai – how in the world did you get up there?”, “Kai, you’re getting so big!”, “Kai, our hands don’t belong in the ________” “Kai, sweet little man, big brother, my son…. I love you.”

Every one of you has a story. Every one of us knows someone with sorrow and pain. I encourage us all to be brave, be courageous.

For all of us: be brave and not feel ashamed of when maybe it’s too hard to fight the pain. Feel the freedom to ‘name’ what you’re going through. Be courageous to let people in – there are so many people who want to walk with you and who will respect how you choose to go on your journey.  When it’s our turn to walk alongside, be brave in reaching out and courageous in accepting silence: know that no response, an inability to respond, and/or tears does not mean the gesture was in vain. Your presence, your message, could be the one reminder in their day that love wins.

These days, one of the things I love is hearing little Maya’s little voice singing the tunes of songs she can’t quite articulate the words to. Sometimes hearing someone’s voice can trigger so much in your heart which is maybe why I love this video of little Kai Kai’s rendition of wheels on the bus. I sometimes just like closing my eyes to hear his voice on a video – I can picture him so well.

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