I am angry.

I am angry. Angry may be an understatement. I am angry with a heaping
spoonful of frustrated, mixed with a dash of hopeful. Fold in a bit of desperate
and that is where I have been the past few days. . . hence the reason I haven't
posted a blog. I've been trying to work out my emotions with God's grace without
much success, it seems.
I've watched Noah slowly deteriorate over the past week as the tumors grow; day to day he looses some function that at one time gave him independence and confidence. He has always been a proud little guy, not wanting to cry over spilled milk or even a port access. He didn't want me to help him use the bathroom the other day, so I stood close to the toilet holding his backpack (that houses his morphine pump). He lost his balance and fell off the potty. As I helped him up he forced a smile through embarrassment, saying "I am going to laugh at that, Mom. Yep. That was funny." I know he is not only hurting physically, but his pride has been crushed and he fusses at me if I call him my big boy. He retorts that he is a little boy now. Wearing pull-ups again, he needs a lot of assistance to walk on his frail legs and also is loosing his vision so he runs into things without someone directing him where to turn. His train of thought wanders and he forgets the phrases he is speaking before he finishes them. Last night as he was lying in our bed during one of the few moments he was awake, he told me we needed to take him inside, he needs to be in his house. While John played some of Noah's favorite songs on the guitar he did his best to sing along with a very faint, raspy voice. He hasn't had any fluids through his iv because of congestion/fluid buildup and very little food for several days. His breathing pattern has slowly been changing from day to day; last night I timed 12 seconds between breaths. His pain is what I would describe as borderline severe at times, based on his past expression of pain. Yesterday and today he hasn’t interacted with anyone except during his few periods of alertness in the late evening. Our family just keeps sitting with him, talking with him, reading his favorite books and looking for some kind of communication.
I know it's better for him to be medicated than in severe pain, but seeing him almost lifeless but a deep breath here and there is horrible. It's like hell on earth watching my child suffer and slip slowly away from me, and I don't use that cliche lightly. We have had some sweet moments the last week, as I've noted in the last few blogs and he decided he wanted to go to Toys-R-Us on Saturday for a shopping spree. He did well and sat up in a buggy in order to better see his treasures. Monday evening he had a burst of energy and wanted a prize from Target. He did such a great job that one prize became four and he was able to lay down and "play" with his toys at home. These moments stir up some hope in my heart, but the anger is still there as well. Noah hasn't moved from our bed since Tuesday evening. Last night, he struggled to breathe and gasped for air several times during the night. He doesn't have the strength to cough up the mucous from his chest. These all are indicators that the end of his earthly life is near, whether it be a week or days we cannot know.
 Even though I have cried and screamed to God in my heart, and I do not approve of the path He is allowing my family to walk, I am choosing to love God and trust Him through this situation and in my anger. In the same manner I choose to love and trust my husband when I am furious at him (yes, we definitely have our moments) but on a completely different level. I made a commitment to John in December of 2005 to stick with him through the good, bad, and the ugly, and to choose to love him every day of my life. (Marriage is definitely not always fairy tales and pixie dust, and true love is deciding to love my spouse when it’s not convenient for me to do so, i.e. things aren’t going my way, my needs aren‘t being met, life just plain sucks.) That commitment I made should not be broken. In a similar comparison, but on a completely different plane is my commitment to my God and my faith. When I decided that Jesus was the man I wanted to attempt to emulate, God was the Father I needed and couldn’t find on earth, and the Holy Spirit was real, and my Comfort, I was all-in with no turning back. Sure I've regressed in my walk with God, and I've wrestled and worked out my salvation like any other Christian. But there is one thing that I’ve always clung to - His love never fails. After becoming a mother I can see a tiny glimpse of how much He loves me, and the truth of His promise to ALWAYS love me, no matter what. When Noah has acted his worst, called me stupid, told me he didn't love me or want me around, I became hurt ("you hurt my heart!" as he would say). But my love for Noah is never once based on his ability to love me back or his choices to ignore my commands or even his respect for my decisions for his life. My love for Noah grows so deep that neither death nor life, angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing can separate Noah from the love I have for him. Now I am quite imperfect and ignorant, and therefore cannot love perfectly as does my Father God. So if in my imperfect love for my child I can without question love him beyond his own imperfection and ignorance, into eternity, how much more then is my Father God loving me through this anger and frustration, pain and desperation I am feeling right now? NO, I don't understand this suffering my child has been forced to endure, but neither do I understand or claim to even begin to comprehend the way God willingly sent His Son to die as a sacrifice for a sinful world, aka you and me.
In October 2011 after my life was uprooted and moved to Birmingham, I completed a miscarriage and found out about Noah's third recurrence on the same day. In my frustration and despair, God gave me the faith to claim this truth in my journal:
"He may allow everything I have to be taken from me - my son, my husband, my home - and yet He has still given me the greatest gift in the world in salvation through Jesus Christ, despite my unworthiness. This is the ultimate act of kindness and compassion - this is not at all 'fair.' How could I, knowing and receiving this, ever turn my back on Him?"
Right now, my life is not fair. My son’s life is definitely not fair. It is not fair to my family and friends that Noah is suffering…dying. It is not fair to his sweet little friends whose parents are forced to help them understand what is happening to their buddy Noah. It’s just not fair…but such is life. So that’s where I am today, wrestling with God, once again working out my salvation and emotions, begging for answers to questions that I said I wouldn’t ask in the first place. If you see me or write to me and ask, ‘how are you doing; how’s Noah?” please don’t expect a sugar-coated answer. This is real and raw, and statements such as, “Noah is going to a better place,” or “God‘s plan for Noah is fulfilled” are not going to help. I need my son here with me on earth, and unless the Lord reaches down very soon and heals Noah, my time with him is extremely limited. God’s love never fails, and my love for Him will not either…but we have some wrestling to do. Noah needs peace and comfort - it seems like when we reach a good spot for him, his health changes somehow, causing pain/discomfort somewhere and it’s a continuous balancing act with his medications to keep pain under control. John and I need wisdom, as well as peace; there are always decisions to make with end-of-life care, and we still have lots more to talk about. At risk of sounding like a broken record…this is hard. We appreciate your faithfulness to journey with us and pray for us when we feel at our lowest. I will continue to let you all know when things change for us. Much love to you all!

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