"Gods glory and our salvation"

JIts naptime here at St Jude. My sweet, rashly and itchy two year old is snoozing away next to me with her doggy nestled up against her chin. Perfect. Just as she looks every time she sleeps, except for the rash and itch of course. She is so beautiful. My Piper takes my breathe away each time I see her do something that should be so simple but instead is yet another visible fact that she is not living the life she should be able to...and this hurts me so very much.

Some days I get wrapped up in the Hope and possibliliy of a future Cure. I find myself laughing and forgetting that Piper has had leukemia for all but two of her 31 months outside my womb. I don't dwell on the fact that all the chemotherapy and steroids have robbed her of the ability to walk easily. That the treatments given to save her life have delayed her speech and created an intense fear of being out of the sight of her mommy or daddy. That should Piper respond to this treatment and should she beat the beast that is infantile leukemia, she is still at a heightened risk of other cancers and much less importantly, learning delays and growth issues due to total body radiation.

People often seem to think I am strong. That I am eternally optimistic.

And I have to tell you I am not.

I am eternally strong in my trust that God loves me so ...but every fiber of my being wants to curl up in a ball and weep. I hurt, like only a mother can, for what Pipers life has had to be. I hurt that the large, busy chaotic family I desired to conceive and carry and raise has never been. That Linley requests siblings but asks that they not have leukemia please. And that I know that despite what I want, I may never give Linley more siblings. And that I may not be able to keep the one sibling my body allowed me to have. And I do not understand and I am certain I never will.

How faithful is God going to ask me to be? With the chance of cure so very small and my heart loosing strength every day I find myself wondering where is His glory? Where is the miracle that I know He is capable of and why, oh why has God chosen to withhold it. It is such a difficult thing to look suffering and sickness in the face each day and only be able to love it the more. I ask myself over and over is Gods faithfulness going to be in the little things? The beautiful moments we have daily with both Piper and Linley or will He reach down and move this massive mountain in our midst. My physical ache to heal and love and nurture and keep my children is heard by my God...how good He is to be faithful to me when my fickle heart so often just wants to pout and demand my own way.

How can I stand to demand anything? Yes, Lord knows, I ache for a whole and healthy family but it's even the season in which I had neither that I felt Him the most. Despite how much this season physically and emotionally has hurt us all I must believe that being faithful to Him, despite how much I ache, will in turn support me and continue to keep me encouraged and praising Him.