Friday, April 15, 2016

Hold Me Now

It's 2:56 a.m. CST.

There used to be a time when night time was the best part. I could snuggle under the covers and let my body relax into the the soft and slumbering forms of all the good in my life.

Yesterday I dreamt that we were in a new house. I looked through the rooms anxious to see if there was a space for Ava. And there was! One room had her bed, her things all laid out the way she would have wanted. For a moment I allowed myself the joy of imagining life with her in it. It has been so long since I let this thought come and stay for a while. 

But there's also the recurring dream where I am in a building with many stairs and hallways. We have to get out but we don't know the way. Every door has the potential of being the wrong one. We are trapped and alone. We are trembling in fear.

Nights like that happen more often. It jerks me awake and I reach for her to see if she is there. I can only rest after whispering into her ear enough "I love you's" to elicit one back. Then I can be sure that I am not dreaming. She is really here beside me, breathing in and then out, all proof that her spirit is still very much on this earth with us. But I imagine a time in the future, when living becomes the actual nightmare...when night and sleep and dreams cannot come fast enough and does not last long enough.

Yesterday, Ava went to the hospital for her last push of chemo. It was supposed to take an hour max. We were still in the infusion center at 8:30 p.m., the only patient left for the night. Ava's platelets and red blood cells had fallen and she needed to be transfused. Laying in that small hospital bed, after watching the 3rd movie of the day, Ava fell asleep from the Benadryl she was given to combat the allergic reaction she had to her blood transfusion. My own blood had begun to churn as I felt anger building up at being imprisoned in this sterile room. The nurses that were slow to get the order in for her blood and platelets had become careless prison guards. The medicine pole she was tethered to became her chains and the inability to enjoy the day like countless other children, her punishment.

That same day my friend who had lost her son to cancer just 6 months earlier was celebrating his 4th birthday...without him there. As I posted to wish her son a happy birthday, I read a comment that made me stop and take a quick breath. "It is so heartbreaking...but at least he is not in pain anymore."

Thank God that FB requires typing, and typing requires words to be formed and fingers to move, and that requires time. Because time is what kept me from spewing back a slew of reasons on why the words "at least" should never be used when talking to a grieving parent. 

I don't want to sugar coat tonight. Cancer is the devil, this world is broken beyond repair, and the pain of losing your child is as close to hell as any believer will get to the actual place.

While I was laying in that hospital bed with Ava, a text popped up from my dear friend in Seattle, Jai. She was one of the first cancer moms I met when Mike and I were still shell-shocked parents numbly getting Ava ready for transplant. We shared about life over a cup of coffee. We got real, real fast. There's nothing like kids dying to get you to shed off years of facade and just get down to it. We shared our stories, our hearts, our tears. She ministered to me in ways that no one had been allowed to until then.

Her text told me that her daughter, Allistaire, had relapsed for the 3rd time after her 2nd transplant and that the disease was spreading quickly. Her baby, the one she has fought for over many years, would now likely die from cancer. Her prayer request was simple. "Pray for my faith," she said. She asked us to share this request far and wide to any person willing to pray for a fellow sister in distress, in the testing of a lifetime. If you feel led, please turn your prayers toward my sister, Jai. Please storm the heavens on Allistaire's behalf. Please.

We have talked often about how it is most likely that our daughters would die. Everything is stacked against them. Of all the types of cancers to get, of all ways the disease could have coursed, of all responses they could have had, our daughters have had some of the worst. But still, my heart wanted to hope. No, our daughters will live. I wanted to believe. But now this.

These are the years when our kids are still asking to be held. We are walking down the street and suddenly, they turn in toward us and step in front of our stride. "Hold me, Mama," they say. They look perfectly capable of holding their bodies up, they have been walking for years. But they'd rather be in our arms resting from the weight of the world, however light, on their little legs.

God, our burden is great. Our legs tremble from the unbearable pain of watching our children suffer and then die: touching the prickly fuzz forming on their bald little heads, listening to wails and moans that our embrace cannot quiet. It is agony to know that there is the very real possibility of seeing them take their last struggled breaths of air, feeling their spirits leave their bodies, tasting the bittersweet truth of what death on this earth means, what life eternal means.  

Allistaire is everyone's child because cancer does not discriminate. We were not a cancer family up to the second before we became one. There is no sorrow greater than losing your child. If there were, I believe the salvation story would have included it. But, no, the story of redemption and love holds the death of a precious son. God, you know this deep, searing loss.

We don't know how to do this. We don't know how to not lay down next to our dying children and just die too. We don't know how to stop fighting. We don't know why this is happening. We don't know how it will end. We don't know how it will be redeemed.

Yet we do know you, God. And I am asking, with arms stretched high, could you please hold us now?


Christina said...

I completely love this. Your writing is raw and touches me.
And yes, I also agree with your thoughts about that comment. Some of the things people write/say...I just have to show grace. Enough said there ;)
Praying for you all the time! Please continue to update.

Anonymous said...

My heart is breaking for you and your family! There are no words, but the word of God that can comfort you in your time of need.

Isiah 41:13
For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you.

SmileyGirl said...

I met Jai when my daughter was at Seattle Childrens for an entirely different reason. We met in a family room and she reached out to me. I heard Allistaire's story and have followed it ever since. Jai has ministered to me in so many ways through her blog and I've come to know Ava's story too. Cancer is such an awful and unfair beast and all we can do is stand back and support you from afar. Know that my thoughts and prayers go out to not only the Anderson family but to yours also.

Anonymous said...

Thank you for this posting. I met Jai and Allistaire (and her awesome grandparents) at Children's when my 2 year old daughter was getting chemo. Jai was the bravest and smartest mom I've ever know, Allistaire was the most vibrant lovely girl. I remember Allistaire used to waive at us & shout her greetings out at my daughter joyfully every single time we pass her room. Despite all the chemo and radiation therapies, she was dancing, singing, making everyone happy. Oh, she was full of energy. My heart is breaking to find out her end is near... I also lost my daughter last November, but wished so much that Allistaire would be healthy again. I just hope sweet Allistaire and her family have the meaningful, peaceful last moments..

Anonymous said...

Esther, my sister thanks for sharing, truly our cancer kids are the God's angels, they are sent to the world for a different mission, or the mission, to teach the people to love, love each other!