Tag: Grieve with hope

The First Year

I keep saying to myself… I can’t believe it’s been one year. There’s no way it has been that long since I’ve been able to see, hold, and love on my baby boy. He was just here. I can hear his laugh and the way he would inflect his voice and the sound of his furiously fast feet running down the sidewalk. But the seasons have changed, time has continued forward and we are here at the one year mark even though everything inside feels like it just happened.

I remember when we left the hospital after Kai passed away. When we had first entered the hospital just two weeks earlier, winter was still hanging on, there was a chill to the air and the trees were still bare. When we left, I remember it almost being shocking to see how the world had changed…. The world was green and bright and showing signs of new life that happened while we were inside…. inside where Kai’s life had been withering away and the darkness and barrenness of winter felt like the more appropriate season.

I didn’t know how this first year mark would affect me. Every day the pain is just below the surface and a simple memory can rip it freshly open, raw and vulnerable and new. Every day I want to shout, “you can’t see him but Kai’s here!”. As a friend who also lost her son wrote, “it’s like living life with an asterisk” where you want to add the asterisk to every picture and memory to say “Kai is here too”.photo(3)

The anniversary of the date we found the tumors was incredibly hard, I’m not sure why but the memories I had forgotten came flooding in of how everything started – the beginning of the end. Kai couldn’t move, he was groaning constantly in pain, his little hands clutching mine while he tried to rest his head against my chest. I can still feel the warmth of his hands. Then the days continued and the memories kept coming… I can hear his moans that still echo in my heart… “mommy I want to go home… mommy owie, owie”. His piercing black eyes looking at me pleading to help him and confused why I wasn’t making it better. Mommy is supposed to make it better. If love could have healed your wounds Kai, you would have been healed immediately.

March 21. The day Shawn and I got married 6 years ago and the day our son left this earth almost to the minute in line with when we got married. If love could have healed your wounds Kai….

 ….Love Wins.

Those were the words that God was lovingly shouting in my heart when Kai passed away. If love could have healed your wounds…. But oh Love did heal your wounds. You are pain-free not only from cancer but from the pain of this world and this world is so much more filled with love and community and service. Our brave little soul.

We have been surrounded by so much love and support this year, it is truly unbelievable. Shawn and I are not worthy of this amazing life and sacrifice and compassion we have been shown by God and each and every one of you. We don’t know how to do enough to serve you all and give thanks. Thank you to all of you, sincerely, sincerely, sincerely, thank you for helping us hobble and limp through this year.kai and shawn at zilker

Kai, my sweet baby, big brother… our little nuggie …. Goodness gracious how much I love you so and how I wish I could just get to be your momma in a “normal” way… but Kai Kai we will keep being your parents and love you every single day of our lives and thank you for teaching us all so much in your short but beautiful life.

 

 

 

 

Gifts

Six months. Six months…I wish I could be writing something else after those two words…maybe like today marks six months since Kai learned how to ride his tricycle or look how much Kai has grown in six months. But, today marks six months since our sweet boy was able to let go of all the pain and suffering he felt and be free.

For some reason, this milestone is hitting us harder. I think they say it’s because the shock is gone by now and it’s just… real. The absence of his physical presence – the whirlwind of energy, the little voice talking nonstop, the constant to/from the refrigerator or pantry because he loved eating. This past weekend we had an amazing uplifting weekend of getting to do the Houston Head for the Cure race and spend time with friends who are family to us. But coming home from trips out of town always makes his absence feel so much more present, coming home isn’t complete without him. My home here, well, in my mind and heart should have Kai in it.

I’d love for Kai to be in this home, but he’s Home now.

The smiles and joy I had the chance to see on his face here is nothing compared to the joy and smiles God has prepared in His home, and for that, how can I be nothing but on my knees grateful to a loving God that Kai is not suffering, but instead living this new life of goodness and joy I can’t even imagine. I try to keep that image of the true Home in my heart and plant my roots there and keep my eyes focused on Him while living this life. I feel that I fumble so much in doing this, but I am trying.

It’s interesting they say that at six months the shock is gone because now I feel like Shawn and I are more often saying, wait, what just happened?!? I find myself asking, “Kai was real, wasn’t he?” I know that may sound stupid, but I think I ask that so much because now it feels like all of it was too good to be true.

Kai was born – healthy, beautiful, crazy, awesome. Maya was born two years later – healthy, beautiful, crazy, awesome. We got to see a brother and sister interact – Maya’s first smile was because Kai was tickling her; she crawled for the first time because she was trying to get to Kai. I got to sit in-between them while they both cried in their car seats on long car rides – Kai holding my one hand and Maya the other.

It was almost too good to be true.

None of those gifts were because we deserved it or we were entitled to it. Not one single thing on this earth is because of that. Every thing is truly a gift. This moment, this breath, this memory, this love and pain in my heart – it’s a gift. Those moments, the good, the bad, and the ugly, they were a gift.  So even though these six months have been marked with pain, they have also been marked with an infinite number of gifts and opportunities to live with purpose and love more. We have encountered so many people who are suffering and yet they are giving, loving and sharing with others. I want us to do the same. We have so incredibly much to be thankful for, we should be sharing these gifts.

I wanted to share this video, well because I love it so much. I think I just loved this moment I had with Kai and this video seems to capture so well the sweet side of his spirit – it was a rare, quiet moment when Maya was first born and was actually asleep. Kai at the time had taken to sleeping on the floor and he decided this little sleep mat was his “new bed”.  You’ll hear him say “there’s no daddy on there”…. Ahh “kids these days” and their technology – he thought we were FaceTiming with Shawn and expected to see a smiling Shawn he could talk to.

Thank you, thank you, thank you for all of your support, prayers, friendship, messages, kindness, donations to charities, and so much more. We are sincerely grateful and would not be able to be still standing today without you all.

Roller Coaster

It’s been over five months.

Those five months are a small part of a roller coaster that won’t end for a very long time. It’s a roller coaster that goes up and down so much that by the time you recognize you’re at a high point, you’ve already leveled off and started a descent. I’ve walked into Maya’s room at midnight and been lifted to a peak only to walk into Kai’s room next and find myself plummeting!

My thoughts are a roller coaster. For many months I lost the ability to zone out – to focus on nothing when it was a luxury to literally think about nothing. Like those times when you find that you’ve driven for 10 minutes but don’t recall actively thinking about driving – you just went from point A to point B! I could not do that anymore. My heart and thoughts and soul permeated with thoughts of Kai nearly every instant that I was not actively thinking about something else. Driving. Eating. Sitting in a dentist chair (really). Kai. Kai. Kai! Those thoughts were always a 50/50 mix of despair and joy and they are totally exhausting. Nowadays those thoughts are heavier on the joy side. I think less about those terrible days in the hospital and more about Kai playing with his sister.

Speaking of Maya – she insists on watching videos of Kai on our phones. It’s the first thing she wants in the morning. If you take your phone out during the day she’ll reach for it and say “Kai, Kai”. She knows her brother and her face lights up when she sees him. She is forcing me to see the beautiful times with her brother. She even learns from seeing him in these videos. It’s amazing to see the likenesses between the two of them and so gutwrenching that we won’t see the two of them grow up together. Kai’s love for Maya is so evident in those videos and Maya’s love for Kai is so evident when she watches them.

On a micro level so many good things have continued to happen including weddings and healthy new babies to friends and family (including a new nephew honoring his cousin with a middle name of Kai!). Yet I’m also more aware now of all the dreadful things that are happening – car accidents and cancer and very sick babies. It is so hard to see friends struggle inside life altering events that it gives me great respect for everybody that has supported us along the way. Providing support to each other (and accepting it) won’t fix everything, but it holds us together.

While I don’t cry as often as I did a few months ago, I miss Kai more than ever. You can’t help but wonder what he would be doing with his sister and his friends. How would he grow with them and learn from them and teach them? I wrote a letter to Kai on his birthday – here is one line: “I would give anything to go back to a point where we are totally exhausted every single day because keeping up with you was like a never ending marathon.” Kai’s missing energy will never be totally replaced with exhaustive grief because the love that was always there will never go away. The roller coaster has always been there. The only thing that’s changed is that while Kai was riding on it with us for a few years, he got off early and is waiting for us at the end.

Waiting

This week will mark our little baby girl Maya’s first birthday. Holy moly – I know they say time flies, but I just truly can’t believe it. Maya has recently become almost obsessed with watching videos of her brother on my phone. And in the morning if Maya sees a phone she points and says “Tai Tai” and so I let her watch some.

I love seeing him but it also makes me realize how much I took for granted and that pains me so much. Seeing his videos for the umpteenth time, I notice all of the little things – those movements, expressions, nuances of his voice that I know in my heart, but now notice with my eyes and I wish so much that I had just focused so much more deeply in those moments. I find myself watching Maya – the way she is discovering new things, trying out the different octaves (screeching) of her voice, her laugh and funny gestures. I want to be more present. I want her to know she is loved every moment. I don’t want to wait do those things. Don’t wait to give her that hug or tell her I love her even though she has no idea what that means. Don’t hurry her up because I “need” to run an errand.

I hate this but I admit that there definitely was a part of my life where I often lived in the future….Focusing only on what was to come, making plans, or thinking about what could be and not being in the present. I also admit that I did this a great deal when I became a mom – the immediate upside down flip your life takes hit me right upside the head and I grieved the loss of certain freedoms. Yes, in becoming a mom I also got to see how stinkin’ selfish I am. I was also scared because I didn’t/dont know how to do this whole thing —  make him stop crying or help him learn how to sleep, I kept thinking ok, when he’s so many months old it’ll be better, or I wish I could fast forward through this part. Oh, I hate, hate, hate remembering that I had those thoughts. I would give anything for those moments again.

With Maya turning one, I feel so bad because I feel like there is this chunk of time when Kai started getting sick and then of course the time in the hospital where my focus was Kai, and I feel like I missed part of Maya’s first year, I wasn’t fully present in the moment. I don’t remember some things.

A million different thingsare going in our lives, we get “busier” every second. Sometimes I feel like I’m living life in fast forward. But, it’s hitting me hard this week – STOP. The message, “don’t wait”. Don’t wait to live your life. Stop spinning and live it now. We all wait for the “right time” to do something, or waiting to feel less anxious or less busy or whatever the reason, but don’t. Don’t wait to live. Don’t wait to go after your dream or tell someone you love them, or reach out or give a hug.

I think maybe we wait because we’re scared or we feel something is more important. This is what I think causes me to wait at least. But I want to be better. And we’re scared of being hurt, we’re scared of it being too hard, we’re scared of the unknown. But, life is full of bumps and challenges we can never anticipate, prevent or prepare for and when they hit you have no choice but to deal with it. And we can.

I never in a million years thought any of this would happen. And of course I wish so so so much that this didn’t happen. But, every second of this pain means my heart grieves the loss of a love that is still alive — I get to love Kai, and I got to experience his life. What’s that saying —  it’s better to have loved and lost than have never loved at all – and as much as this hurts so bad, the love I feel for Kai is so much greater than that pain and there is no doubt whatsoever that it’s worth it.

So, please don’t wait to be in the moment. Don’t wait to live life. I realize I’ve learned this lesson in some ways a little too late. This a beautiful life amidst the broken-ness, and I don’t want you or I to miss one more thing.

And I do love how kids do really live in the moment, fully being themselves and not waiting to live. And if you feel like howling like a coyote in the backseat like our buddy Kai, you go right ahead.*

*(for those concerned howI obtained this video – yes I was driving, but it’s not what you think. I heard him doing this so I picked up my phone at a stoplight and then just pointed it backwards haphazardly hoping to at least capture the audio and somehow luckily got the video too)