Monday, June 22, 2015

Happy Father's Day!

Before kids and cancer and a life cluttered with busyness, there was this man that loved me well. And, now, that we have added to our family so many beautiful lives, he has loved them well too.

I like words and I like to express myself, but there are some subjects that are too deep, too full of emotion to assign tiny black letters too. Expressing my gratitude and love to Mike is one of them. But I thought this article did a good job so I'll borrow these words instead of burying my affection in my heart.

Mike does all of these things with more love and grace than I ever thought possible. Happy Father's Day to a man that deserves the best and instead settles for the everyday mundane with us.

"His heart aches for his child and his mind swirls with thoughts of what was supposed to be. He thinks of how he should be playing catch in the backyard with his son instead of lifting him into bed at night because he’s gotten too heavy for momma to do it. He thinks of how he should be letting his little girl play dress up with him and having tea parties instead of setting up the feeding pump that will give her nutrients through a feeding tube for 18 hours straight.

While he holds onto hope that his miracle with so many special needs will get better, he experiences what true love is daily through his child and accepts this life, puts on a brave smile for his family, goes to work to pay the bills and is always there to hold his wife when she feels doesn’t know what to do or where to turn.

This dad experiences the joy, the heartache, the love, the fear… all of it. He is willing to go unnoticed, unheard, unseen not because he isn’t equipped to live this special life, but rather because he is willing to be the strong, silent backbone for his child and wife. He is selfless and puts his own feelings aside so he can power through and take care of his family. In a society where the moms of children with special needs are constantly praised, the dad is often the unsung hero behind the scenes, snuggling, bathing, giving meds, working and allowing his family to thrive.

The dad behind the diagnosis may be hidden from your view, but he is there. Quietly supporting his family… and doing an amazing job."

Wednesday, June 3, 2015

Deeper Dependence

"Why are you looking at me like that?" Ava asks when she sees me staring at her intently. 

She has a right to ask. I am looking at her like a hungry animal because I'm starving to take in every detail of her perfectly puffed out cheeks, her crown of curly hair, her brown brown eyes...and so I stare. But what I'm really thinking about are the possibilities. There are so many. 

There is the possibility that she may relapse and that we would have to subject her all over again to this horrific treatment, except this time, it would most likely only buy a few more precious months, days, hours, moments with her.  

There is the possibility that she will suffer greatly in the years to come whether with physical side effects from the radiation, chemo, GVH, or great emotional distress when she is old enough to understand that she will likely never bring forth life from her womb.

There is the possibility that she may grow up only to be stricken by a secondary cancer. And the day may come when we sit by her bedside and brush back her hair from her eyes except this time it will no longer be a little girl's hand that we clasp but that of a young woman filled with the desire to live, live, live.

And then there is the possibility that she will live out her days long after we have passed on. This is the one I linger on. The chance, may it be so, that I will see Ava transform from a little girl ravaged by cancer into a radiant young woman in her teens, twenties, thirties, etc. takes my breath away. I allow myself to imagine her going to school, beginning to find her identity, attending her first dance, moving on to college, finding the perfect mate, becoming a mother with children that the Lord blesses her with through some miraculous act or through the beautiful act of adoption. 

I find myself lost in these thoughts and am only snapped back to reality when I hear her curious voice ask, "Mama, why are you looking at me like that?"

I have to admit, in the beginning of all this, I thought she was sick because of something I did wrong. Maybe God was mad at me. Maybe I allowed her to get too many x-rays. Maybe I didn't suffer enough in life and this was my cross to bear. 

Once, after a particularly terrible incident of almost losing Ava to anaphylaxis, I angrily asked Mike why a loving God would be so unloving to us. I'll never forget his answer because I've had to apply it to life many times after. He proposed that God's loving hand was what actually held back the full extent of wrath that we deserved and gave us, instead, what we were not worthy of--more of Himself. Because as I muck around in the trenches, I see that He is near, right beside me. 

Perhaps out of His immeasurable love, He is teaching me deeper dependence because He knows that I try to rely on myself. Perhaps every trial in life is meant to bend our knee, bow our hearts, fix our eyes on Jesus. 

Maybe without this season, the only time my body would lay prostrate would be to sleep instead of to cry out for every parent that longs for one more day with their child.

Maybe without Gwen's eczema and my need to scratch her back for countless minutes throughout the night, my hands would be busy scanning my phone as a distraction instead of asking God for patience to deal with the everyday irritations like itchy skin.

Maybe without interrupted sleep every night, I would wake up thinking, "Three kids: a cancer kid, a child with allergies, and an infant...I got this!" Instead of remembering that every breath that I breathe is because of His grace. 

But most of all, perhaps, I would forget that I need God, that I need Him with desperate measure: the One who has conquered all negative possibilities and has granted us every good and perfect gift. 

And I would forget to gaze upon Christ, the only One worth staring at.


Thank you for your prayers. They have moved mountains and have slain the giants in our lives. We humbly thank you for remembering us in your prayers.  

Prayer Requests:

1) I have been particularly fearful of relapse these past few weeks. I pray that Ava would never ever have to battle cancer in her life again. But if that day ever comes, we pray for His grace for it will be sufficient to cover us in our time of need.

2) Ava has also been eating less than normal and has been complaining of itchy skin at night. We pray that these are not signs of chronic GVHD and especially that we would not need to use steroids to treat these things. The steroids have long and short term effects that are very undesirable. 

3) Gwen's skin has been the worst it's ever been. She has a lot of trouble sleeping at night and functioning during the day. Her irritated skin is effecting her day to day activities. We will be in Denver from July 27-August 8 so that she can be treated at National Jewish Health for her eczema. We pray for the doctors to have wisdom and to help us implement a plan that will get Gwen to a healthy place again.

4) Gwen has also been complaining of headaches for some time now. She will be visiting an eye doctor to rule out vision problems. If the opthamologist cannot find the source, Gwen will then be getting an MRI to see if there is anything of concern that is causing her headaches. We pray that her headaches would go away and would not be anything serious.

Now on to a very happy announcement! Ava's chimerism results came back and she is at 100% donor!!! We hope her cancer will never ever return.

 Jude just chillin' with Ava at clinic. Never mind that he is half her size already.

My three little monkeys

Dear Jude, this is just the beginning. Love, Ava and Gwen

Jude's got his eyes on you two.

1) Why do I do this to my children? 2) Why is my room such a sty? 

Jude, you need to lighten up a bit. You're too serious all the time.

Monday, June 1, 2015

From Facebook

May 27:
This kid likes to watch food network programs with me because she knows I enjoy it.

She asked me to watch Iron Chef with her today and this is a picture of her crossing her fingers in hopes of Bobby Flay winning the match.

I love her. So. Much.

May 27:
These girls have seen, tasted, and felt hardship. But they have also known love.

May 29:
At clinic with 2 out of 3 of my loves. Missing my girl Gwen but hopefully today's visit is short and sweet. Praying for good numbers!