Sitting In A Postcard

Sitting In A Postcard

The darkness wraps around me like a soft blanket. Colors are muted into the shades of pre-dawn. The sound of the waves lapping against the beach, rhythmic, calming. My view from the 18th floor of this exquisite hotel down onto the beaches of Waikiki is limited only by this gentle darkness.

I was awoken this early by the soft voice and gentle touch of my angel. My four year old son. He is my miracle. When I wonder if God is real and if He is good...(Lord, please forgive my humanity) it is his innocent face and voice saying "Mommy" that reminds me of God's factual, provable, indisputable ever-loving reality.

I sit here in the pre-dawn darkness on my balcony in Hawaii. The notes of "Give Me Jesus" flowing around me, a hot beverage, and this darkness. But it is not a darkness to be feared. It is a gentle darkness, full of warmth, and promise.

To my left I see the twinkling lights of Waikiki, mirrored in long gold columns onto the waves. Directly below me is the infinity pool, glowing turquoise and tranquil with the lighted tiki torches dancing in the breeze. When I look directly out I see nothing. Nothing but a soft black/gray. The sky is the same color as the water creating kind of a fuzzy, eerie, warmness that holds me. This world of simplicity is quiet. I like it.

It is the morning of our second day here in Hawaii. My family is around me. The only thing that has ever mattered. To say it is surreal would be an understatement. As much as I have traveled I have never been to Hawaii. Its always been on my list, but places like Italy and Africa took precedence. I wish I had not waited so long. I love it here.

But we are here for a reason I wish never existed. DIPG. My Julianna. As I sit here, alone, nothing but the sky, the water, and You, Lord....I ask "How does one reconcile this beauty and pain? Hope and   humanity. What used to be and what is?" I asked God to help me not overthink this trip. Not to struggle with the "I love Make a Wish because they are making this possible for my Julianna and I hate them because they have to," kind of thoughts. I prayed many times for that not to be in my heart here. It would taint it. She would see it on our faces. She would know...

How does one reconcile the "What could happen" with "What is happening"? I heard the most poignant message for church the Sabbath before we left. A sweet friend, used by God, spoke about fear and faith. She said that Faith is a decision. Not a feeling. So true. Many of us wait to "feel" faith. I am sorry but it will not come. You will have times of great feelings toward our friend Jesus, but Faith is the choice to believe He is Good, He is real when you have no feelings left. Satan whispers lies in our ears that if we don't FEEL God is is not there. Father of lies.

Our friend said that fear is really saying "God I am not completely sure that what You have planned will work out so I need to make a backup plan." That resonated so deeply with me. Like a voice saying what my heart was feeling. How arrogant of me to think that any plan I made would be safer, wiser, better then one made by the hand of God.

When we got off the plane here in Oahu the air filling our lungs was sweet, warm, Hawaiian. Looking down onto the beach, seeing the green mountains, surfers balancing on the white capped waves, pineapple juice in my hand....I had the distinct impression that I have fallen into a postcard. That I am sitting in one. This sand is too white, the water is too turquoise, the people are too beautiful to be real right?

I have had the feeling before, when I went to Aruba with a quartet I was part of in college, beaches, palm trees, white sand. When I stepped off the train in Venice, the colorful buildings, the canal...the trees in Africa...Postcards. All of them. Places I had dreamed of going, seen pictures of and when I finally came it was like "Wow, this is real! This wasn't just a story, or a photoshopped promotional tool! It is even more beautiful then the postcard!"

The sky is changing to a muted grey, with streaks of deep purple and pink. I can see the outline of the tall mountain across the water. Black and two dimensional, it is majestic. Appearing out of the darkness like a stately guardian that was there all the time but I couldn't see it. I think that is how God is....There, big, solid, real....but with the darkness of the world we just can't see Him till the Son comes.

I remember Julianna saying to us while she was in the hospital right after she had gotten diagnosed. "No more sad tears, only happy tears. Lets fight this!" That is the message of this trip. However improbable we are here, in this postcard, together. Every moment is real. Every moment is precious not in the morbid make-memories-cause-you-may-not-have-long-left-together kind of way that the doctor said....NO. In the this-is-where-we-are-today-and-we-are-blessed kind of way. No sad tears. We will sit in this postcard for these five days and feel goodness. Blessings. Togetherness. Whatever happens when we get out, well....I will leave that to Gods' planning.

She smiled yesterday. Really really smiled. Giggled, laughed, shrieked, swam, mothered my son as she used to do. It filled my heart. To see her happy. Like HER. She did a little happy dance once. I almost burst into happy tears. It was so like herself. Today is here. I am here with her. To see her see Hawaii, and that is a gift.

I see my sister and brother-in-law. I love them so. I am so proud of them They are the best parents anyone could ask for. They may not feel like it, but the love, and focus on the now they show inspires me.

I see the water now. The fingers of sunlight are reaching from behind the black mountains and shooting across the sky. I see a dark figure of a surfer on their board, paddling out into the blue. Tranquility. The ironic part is, when you think about going to a "postcard place" you think that it can't possibly reach your expectations. That the water can't be as blue, or the air as sweet, or the sun as magnificent. You are sure these postcards have been photoshopped, I mean really, isn't everything made to look and sound better then it really is?

The irony I have found is this. Postcard places are BETTER in real life. Genuine places of beauty and peace cannot be captured in 2-D. I am struck, sitting here on the 18th floor gazing down on paradise....What if Heaven is that way? We have just a "Postcard" view now. An image given to us in the Bible of what it will be like. How it will feel, what we will do. In our human way we try to bring it to life. The song "I am Only Imagine" says " I can only imagine, what it will be like, when I walk by Your side....surrounded by Your glory, what will my heart feel, will I dance for you Jesus, or in awe of you be still, will I stand in Your presence or to my knees will I fall, will I sing halleluiah, will I be able to speak at all I can only imagine...."

We are living with only a postcard view of heaven. A promise. When we get there...Oh when we really get there, step into that place...the air will be sweeter, the sky will be brighter, the colors more exquisite, the peace...deeper, the pain....gone. Let us hold onto that hope. That what we see now is shrouded in that fuzzy darkness and soon we live in the real paradise.

Today we are swimming with dolphins. We will be here. All here. Thankful for these moments. Stacie told me that she had read about a teenager with DIPG who said it really stood for "Determined I'm Praising God." What a testimony. What an example of faith in the midst of death. I pray to have that faith and to soak up every moment of this life.

From the beaches here in Waikiki, we send our love to u all. Thankful hearts. Blessed hearts. but mostly hearts filled with hope, for the day we step into heaven and realize that postcard view we had of it....wow....it didn't even come close to reality.

The Dark Side...Waiting For the Light

The Dark Side...Waiting For the Light

Facebook has always been a quandary to me. An odd place where life is filtered, pictures that represent only a moment in time are posted as representative of reality. "The Facebook Life" is a real phenomen that drives some mothers to tears as they compare their real life exhaustion to the photo-shopped image with their counterparts. Feeling like a failure because they don't measure up to the non-reality.

Well, over these past few months I have found much good about this venue. It is an incredible method of disiminating information, rallying the troops and connecting with individuals who can support you in your time of need. I am thankful for Facebook. And for each and every person who has clicked on Julianna's website, donated, and most of all prayed. 

However, as I become more intertwined in this community of DIPG warriors, families, advocates, and read each of their stories, I am overwhelmed. There are too many. Too many little faces in the innocence of childhood. Too many Mommies and Daddies, Aunties and Nana's desperate for help. 

Its odd actually. At first I felt no part of this community. I mean surely this is a dream right? The rain drops pounding on the windows outside the hallway of the pediatric oncology unit were not real. The little red wagons being pulled around the nurses station, filled with little ones are an illusion right? IV lines disappearing under little shirts, pumps being pulled behind by hollow eyed parents with smiles of desperation. They all look the same. Why is my Julianna in one of them? How can those be her little braids disappearing down the hallway in the wagon pulled by her Daddy? 

We will wake up tomorrow and she will come bouncing in all smiles and curls and sparkle. Petite and agile, a little dynamo. 

But it wasn't a dream. The pain of it would surely would have woken us up by now. No one could stay in a dream and still have this much pain.

Well if it wasn't a dream then it is a giant mistake. Yes that is it. It's an error. They have the wrong child. They haven't done their safety checks (thinking as the ICU nurse I am) and made sure they have the right patient, right chart, etc. Seriously people, you should check your stuff before you scare people to death....

But they did and we are.

I remember vividly the moment we heard the words it seems all DIPG families here. The oncologist was standing in the room. She had come in all chipper and smiling. I had not seen the MRI scan myself yet and asked her to show it to me. I might be an ICU nurse, but it didn't take one to see the large, glaring glow of foreign tissue in the middle of my Julianna's brainstem.

I found my eyes kept looking down to the lower lefthand corner of the MRI. Where her name was. I kept checking to make sure I had read it right. That it was still there. That I was still there.

As my eyes kept returning to her name. The name we as a family had talked so much about before she was born, the oncologist just sort of droned on and on. I am sure she was saying words that mattered, and they probably even made sense. But, honestly all I could think of was "I wish you would just be quiet. Stop talking. Go away."

I know that it is probably horrible for me to admit it. I am kind of ashamed to but it is the truth. These thoughts I had. I share them only to give insight into the moments that shape us. So that others who have walked through moments such as these don't feel alone if they have thought similar things.

It's uncanny how the words were heard on that diagnosis day have been heard, almost word for word by other families with the same diagnosis. "Go home and make memories." "Well, its inoperable, and we don't have any real treatments so....you should probably just...make the most of the time you have left."

As these words floated from the lips of the oncologist into our ears...I remember strange things. The way her pants were creased down the front. The way her smile stayed intact as those impossible words roll out of her lips. Why is she smiling? Stop smiling, this isn't a time to smile. I wanted to wipe it off her face...literally. The way her hair curled up around her ears. Why did she bother to curl her hair? Who curls your hair when you have to tell a family their little girl is going to die? She should be wearing sackcloth and ashes for crying out loud....The way Julianna looked so ok. On the bed, her mommy arms around her. How can she have a time bomb in her little head? This is ridiculous. I am picking her up and walking out the door. Enough of this dying rubbish.

I remember the way the pattern on the floor was symmetrical. How could it be so even when everything just fell apart? The world is off kilter and the floor is still in nice even patterns. I don't blame the oncologist personally and I should feel badly for picking apart her appearance but it was what my mind did. I will never forget those details. 

Two months later, as I sit here, I realize that I have come to another reality. The shock has not worn off. The wish for different news is still there. But we have spent time educating ourselves. We have become acquainted with other families who are living this same reality. Facebook is a wonder. A resource of information, encouragement, and support. 

I am thankful for each of these amazing people who have banded around us and offered information, contacts with others who are walking down similar roads, and support. 

I thought DIPG was rare. They told us it was rare. It isn't rare enough. There is a wonderful Facebook page dedicated to the support and awareness for families fighting DIPG. Almost every day they share stories, ask for prayers, send out encouragement and advocate for these precious children. Almost every day there is a new face, a new family has heard those words, a new child warrior is facing this DIPG monster.

Every day these amazing advocates send out the faces, the stories, hopes, and needs of each of these little warriors. Collages of their precious smiles, all fighting for their lives. Each smile is a story. So easy too scroll past. Its not MY child right? I couldn't happen to me. 

I have likened this journey to sitting down and watching TV. Your show goes to commercial and a commercial for St. Judes comes on. Tender music, valiantly fighting little people with no hair and a lot of courage. The pleas for help, funding, and support come from the mouths of mommys and daddys.  While your heart may be moved by these stories, you feel only a twinge of guilt when you change the channel to something less uncomfortable.

We can't change the channel. That child in the bed, walking down the hall with the IV pole is OUR Julianna. We can't seek another view when it gets too uncomfortable or heartbreaking. I am not shaming those who do "turn the channel" both literally and metaphorically. Not at all. I am simply trying to explain something that I can't explain. 

Today it happened. I was scrolling through Facebook and came across a collage of DIPG warriors. There she was. There was her face. My little Julianna. My first reaction was "What? Why is SHE in this collage? I don't understand? Thats not right. She doesn't belong there. There has been a mistake somehow I will have to get in touch with them and make sure they fix that." But it is real. It made it more real somehow, seeing her face there.

I don't want it to be real, but it is. I want to fight, to hide, to run, to scream. To, as a dear friend of mine so elegantly captured my heart " Scoop her up and run to the mountains where she can be wild and free."

But that will do no good. All I can do is fall on my knees. While not literally moving, falling to my knees is the only way to make progress. To find help. To keep breathing. It is the hope we have.

As I sit here and think about it, her face, there, I am thankful for the creators of those collages to do that. To speak her truth. To let others see her amazing spirit, her smile, her heart. While I would do anything to take it away, it is real and I am thankful that her story is being told. It matters. SHE matters. She is not just a number or a diagnosis. She is a life. Full of promise, and hope, and courage. 

The national cancer research budgets allocates only 4% of its annual budget to childhood cancer research. 4%. And of that 4%, the amount devoted to DIPG is miniscule. Ridiculous. Unthinkably small. How can this be? How did I not know this? I read the following quote awhile back. 

It really hit home. I realized that we all have a mission of some kind. Often grown from a personal tragedy or hardship. Yes, it might be a little overwhelmingly sad that nowadays my Facebook feed is entirely devoted to cancer, children fighting for their lives, and asking for financial help. I am not sorry about that though. She lives with this every moment and so will I. As she fights for her life, the least I can do is speak of her courage.

Bottom line. Life can change in a heartbeat, appreciate the moments. That isn't just a quote, a feel good sign to hang in your living room. It is real. I know that our minds can only absorb so much reality at a time. I realize that despite the darkness GOD IS GOOD. THERE IS HOPE. Don't feel sorry for us. 

I have a new perspective on others who may look, walk, talk, or live differently. As I walk through the grocery store, hand in hand with my hero, I see the faces of curiosity, sometimes pity from those who pass by. A little girl, unsteady on her feet, a big red service dog at her side. I know they are thinking "What has happened to her? Why does she have a service dog? What is her story?"
I know that their curiosity is not malicious. I find myself so proud of walk beside her. If they only knew. Big battles, little warriors.

Sitting here tonight, odd thoughts rambling through my mind and jumbling onto the keyboard. I don't know what my goal of sharing this was. Just felt like I needed to capture them. Thanks for being here with me. For me. For all of us. And mostly for my little Julianna. Who inspires me and drives me to pray for heaven like I have never prayed before. 

She is teaching me to live NOW. She is teaching me to love with all my heart NOW. She reminds me that the life we have here is merely the foggy moments before the sky clears and the light breaks through. Her courage and bravery fill me with the yearning for heaven. Please come soon Lord. Thankful for all of you who have been here for us and for our Jesus who has never let us go...