Unmeasurable Joy

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Joy. Gut busting, yelling from the rooftops, hugging neurosurgeons, tears, tears and more tears. My daughter is going to live. LIVE! Literally I cannot hardly believe it.

I’m not sure the words exist to adequately describe what has happened to our family over the last 48hrs, or the last 4 months. The emotional rollercoaster of devastation, uncertainty, paralyzing fear and anxiety, brief glimpses of hope, then trying to keep that hope “in check”, then beginning to throw the conservative hope out the window and truly allowing myself to believe in life. I wonder if it was all a dream. More like a nightmare. As I look at sleeping Abigail now, barely 2 days out of major brain surgery, and she looks perfect, I wonder if I imagined the whole thing.Did I imagine that we were given a terminal diagnosis of a malignant brain tumor? From multiple doctors? Did I imagine hearing “this is fatal”, “extremely poor prognosis”, and “fetal brain tumors are very bad actors”? Did I imagine that we were told repeatedly that hospice was our best option? Even as she continued to thrive and develop, we were reassured that the best plan of treatment was no treatment at all. Her health was explained away as “sometimes these tumors stay dormant for a bit then start growing again” and “she may not show symptoms for a couple months”. We were told we were doing the right thing. The possibility that she’d live through this was never brought up, never an option. Did I imagine all this!? What if we were still sitting at home twiddling our thumbs waiting for Abigail to deteriorate? I’m not sure if I’m angry at the doctors. I do believe that they were confident in their thinking and were trying to prepare us for what they “knew” would happen. Probably what would have happened in 99.9% of cases. But I also don’t think our doctor sought another opinion before dishing out such a bleak prognosis. We were told we could go out ourselves, but “probably wouldn’t hear anything different.” Ha. I think it would have been wise for our neurosurgeon to take our scans and get another expert’s thoughts. Maybe we could have avoided some of this emotional trauma. Just doesn’t seem right. But no matter. I guess that’s why they call it the practice of medicine. The doctors were wrong. Way wrong! And I’m so, so glad! I cannot wait to march this girl into their offices and say “Look at her!”. I hope Abigail’s happy ending brings them joy in their error and a story to remind them that things are not always as they seem. I hope as they present a terrible scenario to devastated parents, they say “but, in this one case…” and the parents are reminded that life is always an option. The doctors prepared us for every scenario, except life. But hope is always an option!

My emotions are so vast and complex, I’m having trouble processing them and I just cry. I don’t know if I’m crying out of happiness or sadness or because I’m too overwhelmed to handle this. This wasn’t supposed to happen. I’m incredibly glad it is, but it wasn’t supposed to. I truly believed my daughter was going to die. Went through all the early stages of grief, planned her funeral, squeezed in as many snuggles as humanly possible, and accepted that her time was very limited. My heart accepted that she was going to die. I took her to the beach, stuck her feet in the sand, all while believing the next time she’d go to the beach, it would be to sprinkle her ashes. I fully planned to join the “parents who’ve lost children” club. I’d like to say I prayed endlessly for healing, but I didn’t really. I did pray, but most of my prayer was focused on God’s sovereignty and not so much claiming healing over Abigail. Maybe that was the right thing to do, maybe it was a cop out. I prayed for a miracle, but didn’t really believe it would happen. Seeing this confession in black and white… I’m so ashamed. I’m mad at myself for this, for giving up on her. Giving up on God. For just accepting the doctor’s advice and not questioning more, sooner. I’m mad at myself for viewing her as such a lost cause, I didn’t even bother to get a place for her to sleep. What kind of mother doesn’t fight for her child? Why didn’t I insist on doing everything and anything to treat this tumor? Would it have made a difference if I would have fought sooner? I just didn’t want her to suffer. Didn’t want to put her through hell only to watch her die anyway. Makes me cry now, that she’s very much alive, and I didn’t do anything sooner. Maybe it would have made a difference.

Then, also wrapped up in the incredible joy, is guilt. Somehow, for some reason, we were spared. Why? What on earth did I do to ever deserve this? I just confessed what a faithless, disbelieving ding dong that I am, surely someone else would be a much better receiver of a miracle. Someone who prayed more, believed whole heartedly, who child needed it more. Why not someone else, who deserved it? Why doesn’t every child get to live? Why doesn’t every parent get to hear “not malignant”? Did Abigail get a miracle that someone else didn’t? I know I have no control over it. And God doesn’t dish out miracles based on who has the most points in the religion game. But I still feel undeserving. And I am so so undeserving. Such is the beauty of God. I couldn’t do anything to deserve it, it was just His plan. I am exceedingly, abundantly grateful to receive this gift, the gift of my daughter, but oh it hurts to be here in the place where happy endings are not the norm. I can’t help but feel terrible that we are going to walk out of here and our neighbor may not. I look at those parents. I was supposed to be you. But I’m not.

So now what? In a world where sorrow steals hope and joy, we know we have received a precious, irreplaceable gift. We are stewards and witnesses of a miracle. Now what are we going to do with that? I cannot brush this off as a “oh this is a great thing” and move on with our life. Something major is going to come from this. In Abigail’s life, in my life, in Audrey’s life, in the lives of the countless people who’ve heard Abigail’s story. I must hear God’s plan for Abigail and mother her to foster the greatness that is inside. Things must change. I cannot be a “realist” aka pessimist any longer. I cannot take this life for granted. The calling is there, I don’t know what it is, but Abigail was spared for a significant reason. She is God’s pebble and her ripples will extend deep. Now what are we going to do with this miracle baby? Who, at 2 months, has been just born again and given a chance at life. Oh Lord help and guide us. She is Your vessel. She is living proof of Your greatness. She is a world changer.

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6 thoughts on “Unmeasurable Joy

  1. Our Dear Heavenly Father – thank you for this beautiful miracle!!!!

    I am in tears, I have posted this precious baby to our local newscaster’s page, and I tried to post to Dr. Ben Carson’s page!!!

    I am so happy – hooray for you, Abigail!!

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  2. She is incredibly beautiful! God has a plan for her and wants you to know that. I wish you all the time in the world with your beautiful amazing daughter!!!

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  3. I’m so happy to learn that Abigail is going to live !!! You are right to believe that God has a special plan for her. He has given her a new life so bring her up with love, joy and most importantly, with the knowledge that God has performed a miracle on her. I cried while reading your latest post and I’m extremely happy for you 🙂

    Stay blessed and continue to believe in God !

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  4. I will keep Abigail in my prayers. Being involved with Maryland Right to Life and 40 Days for Life campaign, thank you for sharing your story. I don’t need to tell you parents, but you will be blessed for giving life to Abigail and she is blessed as well.

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  5. Please tell the wonderful grandparents that there is a site on Facebook as a support for grandparents supporting their children and grandchildren. It’s called GRANDPARENTS WITH GRANDKIDS WITH DOWN SYNDROME.

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  6. What a beautiful angel!!! With amazing parents to fight this battle with love!!! He HAS a purpose for her here still!!! You could see that clear!!! She had her surgery where I had my 3 brain surgeries, close to same spot.msne is so beautiful…and will continue to thrive thru the grace of God and love of her amazing family!!!!! Bless your hearts. Bless your doctors wisdom thru our Lord!!!!! Much love to you!!!
    In His Grip,
    Heather Siebens

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