Be Not Afraid

Open Wide

There are so many things I can’t control.  I suppose I’ve known this all of my life, but its never been more clear or pronounced than since my diagnosis of lymphoma.  And in the past few days, I’ve felt this even more intensely.  I became officially neutropenic last Thursday, which meant that my body had lost it’s ability to fight off disease and my white blood cells were non-existent.  Now, on the one hand, I was excited, because this is something that is expected with the kind of chemo (EPOCH-R) I am receiving and I was happy to know that the chemo is affecting my body as it is supposed to (hopefully this means it is killing my tumor as well!).  But, on the other hand, I left my doctor’s office wearing a face mask, with a list of foods I needed to avoid, and with orders to not leave my house until my next appointment on Monday.  Of course, with an adorable baby now at home (which is so wonderful!!) the fact that I had to stay at home all weekend wasn’t the worst news.  Yet, I found myself completely depressed by it, and I knew deep down that it was because it signified how little control I often feel I have left over my day-to-day life.

During the weeks I get chemo, I go to my doctor’s office six days in a row, and during the two weeks I’m not getting chemo, I go to my doctor’s office at least twice a week.  Two of the days I get chemo I spend a few hours hooked up to the bags of chemo in my doctor’s office.  The other days I come home attached to bags of chemo that I keep tucked in a little purple purse.  The purse is always either on my shoulder or lying next to me, and for 96 hours I am continuously connected to the chemo via IV tubes connected to a PICC line in my right arm.  I am so blessed to have the selfless love and help of my amazing family and husband, and the support of countless wonderful friends and family members, and yet, keeping up with this schedule and regimen is still difficult.  (Let me just say quickly how grateful I am for your support-it’s difficult for me to even express how much your emails, facebook messages, phone calls, cards, and gifts mean to me!!)

But even more than it is difficult to keep up with the schedule and regimen of my new life, it’s hard to accept the fact that the way I imagined life with a new baby would be is drastically different from the way it is.  Accepting the fact that I cannot care for John Paul on my own or always do the things I want to with him or for him is heartbreaking.  Since I was still neutropenic on Friday, I was unable to go to his first doctor’s appointment.  Because of the PET scan I am getting tomorrow morning (to determine if the chemo is shrinking the mass in my chest), I will be unable to get close to John Paul or hold him or feed him for the following twenty-four hours.  Though I’d always wanted to breast feed, the chemo makes this impossible.  These things, even more so than the chemo schedule or being house-bound, make my heart ache.  Even though I know deep down that it probably is not true, I can’t help but worry that I’m being a bad mother, or that John Paul and I will be less bonded because of the things I cannot do.

There are so many things I can’t control.  I can’t control the fact that I have cancer and that it has changed my life.  Admittedly, I’ve been wallowing in this fact the past few days (and if you’re still reading, thank you for bearing with me-I really do apologize if it sounds like I’m just complaining!!).  But tonight, I walked outside in the beautiful Spring air and watched a gorgeous sunset with my husband, son, and mother, and I couldn’t help but feel anything but thankfulness and gratitude.  As I watched the sun dip below the trees I let go of everything I’d been feeling:  all the frustration, disappointment, and fear, and gave it up to God.   And in that moment, I was reminded of how strongly I still believe that once we give everything up to God, we receive things greater and more beautiful than we could have even imagined.

One night, a little over a year ago, I literally fell on my knees and cried out to God, “Why?”  I wanted a baby, and I couldn’t understand why it couldn’t be at that time in my life.  I still don’t understand why.  And I still don’t understand why I miscarried my first baby in July.  I probably won’t ever have answers to these questions.  Yet, I know without a shadow of doubt that John Paul is a gift from God and that he came into my life exactly when he was meant to.  Yes, it is hard to accept the things I can’t do for him because of chemo.  But at the same time, I can’t imagine fighting cancer without him by my side.  The love I feel for him is unlike anything I’ve ever experienced and beyond anything I could have imagined, and I know that God has blessed me during this difficult time in my life with my sweet baby boy.

The night I fell to the ground asking God why I wasn’t yet pregnant, a prayer came to me.  I later turned this prayer into a song called “Open Wide.”  It’s words are as relevant to me now as they were that night.  They remind me of my need to let go of everything and give it up to God, even when I’m in darkness and can’t see the light that I know is ahead.  They remind me that even though doubts enter my mind, there is a truth stronger than anything else:  God is always with us, and He’ll never leave us to face our fears alone.

Open Wide

Here I stand, my heart on the ground.
Faith so strong is nowhere to be found.
I wish I could see the path You make for me.

My heart is breaking, but I know You’re waiting with
Your arms and Your heart open wide.

I’m lost and so lonely, but I know You hold me, with
Your arms and Your heart open wide.

Open wide.

I am ready to say I give in.
How long ’till love will win?
I so long for You to make me strong.

My heart is breaking, but I know You’re waiting with
Your arms and Your heart open wide.

I’m lost and so lonely, but I know You hold me, with
Your arms and Your heart open wide.

I am Yours.  You are mine.
You’ll never leave me to face my fears alone.

My heart is breaking, but I know You’re waiting with
Your arms and Your heart open wide.

I’m lost and so lonely, but I know You hold me, with
Your arms and Your heart open wide.

Open wide.

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14 comments

  1. Kristin Jeffery Payne

    Beautiful song Ali! Reminds me that God says he will “never leave you nor forsake you”. And also, “come to me all you who are wearied and burdened and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” I know I have trouble believing this often, even about trivial things in life, nothing like the burden of cancer. I am so sorry you are suffering, and I hope you get a good report tomorrow!

  2. There you go, getting me all choked up at work. But that’s a good thing. You’ve brought me back to what truly matters. Love the line: “…I still believe that once we give everything up to God, we receive things greater and more beautiful than we could have even imagined.”
    Love and prayers…

  3. Rebecca Worthington

    Love you so much Ali. I am thinking of you constantly and praying that tomorrow goes wonderfully.
    It already feels like forever since I’ve seen you, I miss you so much and can’t wait to celebrate Easter with you and to meet John Paul. Call me anytime you need to talk. LOVE YOU!!!!!!! XOXOXOXOXOXOXOXO

  4. Fran Hazel

    Hi Allison, Michael and John Paul, You CAN do this Allison!!!!!God is there to help you through this—I have another friend who is going through a similar(Colon ) cancer right now and she has been posting blogs— Her feelings and thoughts are very similar to yours –so you are not alone in these feelings—She just received good news — as will you and I cannot wait until the day when you can post—I DID IT!!!! And You WILL post that !!!!! LOVE ALL OF YOU—-Give John Paul and Michael kisses from Drexel Hill!!!Love All of you!!! Aunt Fran

  5. Michael Oh

    Hi, Allison, do you remember me?! Mike’s facebook posting led me here. I have not kept in touch with Mike and other friends so long…I heard that you two got married, now I know that you have a beautiful baby….and as I read your writing and listened to the song, I felt my heart breaking so badly. I am so sorry.
    As you said, God is with us and there is nothing to fear when we truly believe in him. I know that it is a difficult journey for you and your family, but please remember that you have so many friends who love you and will pray with you, trying to be with you in spirit throughout your fight against the hardships. Take care and I will try to visit here as often as I can to walk together with you and Mike. -Michael Oh

    • Of course I remember you Mike!! Thank you so much for writing!! It is so very good to hear from you! Your prayers mean so much to us. And it means even more to know of how you’re walking with us through all of this.

      We pray that you are well!!

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