May and every day

imageThese are some of Abigail’s many MRI scans. First day of life, a tumor consuming most of her skull. Six weeks later, some of the fluid and hemorrhaging dissipating, compressed brain tissue bouncing back to life, nothing short of miraculous. And now, two images from her latest MRI in April. Tumor removed, but massive brain loss remains. A MRI scan that likely will never look “normal”. Residual effects on movement, cognition, vision, and whatever else will likely remain for years to come. Countless hours of therapy to do something so simple as to open her right hand.

But she is here. And doing exceptionally well. I share this not to minimize the miraculous feats she accomplishes every day. But I share this to show what a benign (which can imply “not harmful”) tumor can do. And if this is the aftermath of a benign tumor, what about the aftermath of a malignant brain tumor?! Children that endure the poison of chemo and radiation, multiple surgeries, complications, illness and death. Losing their lives bit by bit with every passing day. And the mothers, fathers, brothers, sisters that can only watch helplessly.

This is the last day of May. And the last day of the official “Pediatric Brain Tumor Awareness” month. But for families impacted, there is no end to the “awareness” they face everyday. The struggle of not knowing what will happen, juggling the emotions of stress, anxiety, and depression while still fighting for a normal life, weighs heavily on a family. Our family was helped through our darkest times by kindness and love from others, and we know others also need that. Be a light to these families, reach out, help out, show them love. If you know them, do something. Bring a meal, fold laundry, watch some kids, mow a yard. Support comes in many forms, all will be appreciated. Rally around theses families and carry them when they cannot endure another step.

May and every day.

Remember

imageSometimes I forget. I’ll get flustered at the thought of physical/occupational/speech therapies from now until possibly forever. I’ll get overwhelmed at the pediatricians list of referrals to whatever speciality doctors Abigail needs to see. I’ll get freaked out about her most recent MRI images, that have no tumor (a million times yay!) but still look so grossly abnormal, full of empty space where her brain should be. I’ll get nervous about what her future might look like, if she’ll walk, talk, or have serious problems we don’t know about yet. My mind wanders into la-la land and suddenly I’m losing reality, losing gratitude, losing thankfulness. I’m forgetting.

I’m not supposed to have her.

I’m forgetting that I have Abigail when I wasn’t supposed to. Forgetting that I’m living with her, with everyone, really, on borrowed time. That she should’ve been dead or very close to it by now had those reports been right. Had the world had its way. Had she been the 99.9% of cases. I’m not supposed to have her.

But I do. And when THAT reality hits, those petty thoughts about life’s nuisances come to a screeching halt. I come crawling back to God, away from the darkness, and lay at His feet. Because gratefulness overpowers anxiety, love overpowers fear, faith overpowers uncertainty. Thank you Lord, my heart screams! I HAVE a child to take to appointments, to therapies, pump breast milk for, change diapers of, wash clothes for, snuggle with and smother with a thousand kisses a day.

Do you remember? I hear God asking… Do you remember? That ultrasound tech repeatedly scanning her brain trying to keep up the small talk. That first hint something was wrong. That first conversation, the shock, the numbness. That horrible feeling afterwards watching the world carry on while yours was crashing down. Do you remember? The sleepless nights, constant nightmares. The earth shattering sobbing, begging, pleading to keep my Abigail. That crushing, paralyzingly pain so deep it cut your soul in half. Do you remember?

It feels so very far away. But it wasn’t. I’m so sorry for those minutes that I forgot. I let life’s worries in and wreck the real life You have given to us.

We take it all for granted. I pray that You help me feel this same way with Audrey. To know and understand to be grateful for every second, even in the tantrums and defiance, when I’m about to lose it. Audrey’s life is so precious too. All life is. Take an anatomy class to appreciate how intricately complex and delicate our bodies are. Perfectly designed by our Heavenly Father, every tiny cell important. All working together like a beautifully harmonious symphony that makes you you. Mind blowing. It’s amazing to me that more doesn’t go wrong.

None of this is guaranteed. None of this is deserved. I cannot, for one second, protect my loved ones from anything. I cannot pretend that I have any element of control over anything. But God does. I need to remember to give Him my life and my heart every single day. Life can change in an instant, I know that now. And when it does, and the world comes crashing down around us, the only thing left standing is the one who created it all. Please let my heart continue to praise. Please let my attitude always be of thankfulness. Please, please don’t ever let me forget.

Best Case Scenario

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As I’ve been thinking about what’s transpired with Abigail, one thing keeps coming to mind. You know when you look back on life and can see God’s hand orchestrating events and outcomes? You don’t see it or feel it in the moment, but at some point it clicks – Oh, yes God, that was you. This was so dramatic that it clicked very quickly for us. I can see where God’s blessing and protection was over Abigail, even when we were walking through what we thought was the worst case scenario. But contrary (very very contrary) to what we all thought initially, this tumor/whatever it is (yes, we are still waiting on an official diagnosis from pathology) was the best case scenario for Abigail’s life. What I thought was absolutely the worst case scenario was actually the best case scenario. The fact that they found this in utero at 30 wks was best case scenario. The fact that she’s missing a good chunk of the left side of her brain was best case scenario. The fact that where there should have been brain was a ton of fluid was best case scenario. Obviously, the fact that it wasn’t malignant and has totally stumped the pathologists was best case scenario. I think this because here she is, looking all cute, with no glaring issues. No residual effects from having a massive mass and fluid pretty much filling the left side of her skull. Remember when we got the email back from our first initial contact with Boston Children’s Hospital? The neuro oncologist was very concerned about the “extensive brain damage” that may have already been done due to the crazy amount of stress on her brain. And here she is. Wide eyed and full of personality. Without any indication of any kind of brain damage.

Google “fetal brain tumor” and you will find almost nothing positive about survival. Masses found in utero are typically very, very bad with little chance of survival. However, in Abigail’s case, this thing forming so early, destroying her brain in the developing stages, actually gave her a chance to re-route all of her neurological pathways to the right side of her brain or whatever remains on the left. Children’s brains are so malleable, if something isn’t right, it can just go somewhere else and they can regain function. Based on her MRI scans, she should have significant issues. Movement, vision, cognition should all impaired. If she were an adult, she would be severely limited. If alive at all. But she’s not. Best case scenario.

Problems can also come up because you typically have to dig through brain tissue to get to the tumor to remove it. Very scary. That could case all sorts of unintentional brain damage. Our surgeon told us he didn’t have to touch her brain tissue. There was so much fluid, blood and cysts that was surrounding the solid mass that he could access it without touching any of her existing brain. Never cut into any brain tissue! That’s incredible. He actually went through one of the cysts, right up next to her skull, to get to the tumor. So basically, without being too gross, he cut open her skull and instead of seeing brain, saw all this fluid and was able to go through that and scoop out the solid part. This was also why her surgery was so much shorter than anticipated. No slowly tiptoeing around brain tissues trying to cause the least amount of damage. Shorter surgery equals less time intubated, less risk for infection, less blood loss, etc. meaning overall faster, easier recovery. I envision that all of that stuff was cushioning the mass. Which looked incredibly awful on MRI, very much not survivable, contributing to the terrible prognosis we were given. But turns out, I feel like those big black holes that looked so awful on her MRI images were actually protecting Abigail. Protecting her future and granting her the highest level of function possible. Once again, best case scenario.

I can see God’s hand in all of this, from the beginning until now. As I re-live the struggle to understand what was happening and why,  I now hear him saying, “See, I got this! I know. You don’t, and that’s ok. I know beauty will always rise from the mess. You may not see it immediately, but either here or in eternity, you will see and understand.” I read Job 38 a lot, through the uncertainty, because it gave me comfort to know that God has always been there. And I was not. So, like I’ve said many times, what do I know? Basically, after all Job’s moaning and groaning and questioning God (but for good reason because the guy went through a lot!), God speaks and begins to question Job.

4 “Where were you when I laid the earth’s foundation?
Tell me, if you understand.
5 Who marked off its dimensions? Surely you know!”

16 “Have you journeyed to the springs of the sea
or walked in the recesses of the deep?
17 Have the gates of death been shown to you?
Have you seen the gates of the deepest darkness?
18 Have you comprehended the vast expanses of the earth?
Tell me, if you know all this.”

I love that God puts me in my place here. “Where were you?”, He says. And I say, “I don’t know.” And He replies, “Exactly.” I’ve read this over and over. It helps me accept that I don’t know what’s behind the curtain of our circumstances, and to stop trying to control everything. There’s always more that what we can see and understand. Like all we encounter is the top of the iceberg, God only knows what’s under the water. It absolutely baffles me that He knew this outcome, that we walked through this, so certain we knew what would happen, but we didn’t. And the doctors didn’t. It also helps me accept that I cannot understand why Abigail’s story is a story of praise and joy and many, many others are not. But God knows what we do not. He knows the good that will eventually flow from the grief. He can answer the “why?”. He is sovereign. For His perfect and unknown reasons, God protected Abigail’s life here on this earth. And I am forever grateful.

11 and 2

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11 weeks old. Two weeks post surgery. I think I’ve cried no less than five times today. We are home, learning how to be a family of four. Permanently. Funny, I didn’t realize how much mindshare I gave to preparing for Abigail’s death until it was gone. I built everything on the temporary, planned for “when Abigail’s gone…” And now she’s not. Amazing amazing amazing! I still feel very shell shocked. Like I can’t tell if I just dreamed up the last two weeks, like I dreamed up the last 4 months. Did we really go to Boston, cut her head open, take this thing out, and now we are home like it was no big deal? Audrey’s back to stealing baby Abby’s socks and I’m back to juggling feeding, diapers and nap time (or lack thereof!), like any normal parent. I just can’t believe it. How amazing is it that the only residual effect of the surgery is the incision on her head? You would never even know if she didn’t have a strip of hair missing! We were warned about so many things – CSF issues, infection, weakness or paralysis, the possibility of future procedures. Thankfully, as of now, all seems to be well. Her biggest issue is gas. Just like any normal baby. Again, I can’t say it enough but wow, so so amazed. I’m so overwhelmed with thanks to our God. Still living in a haze of “is this really happening?” Some things will catch me totally off guard. Like last night Stephen and I were discussing the future, my work, finances, insurance, etc. and he casually says, “And when she’s 1…” My heart literally stopped and I couldn’t breathe. When she’s 1. When. She. Is. One. Because she IS going to be 1!! Maybe even 2, 3, 28, 53, and 72!! I started tearing up and couldn’t talk. Stephen looked at me, knowing exactly what I was thinking, and said gently, “yes honey, she’s going to be 1”. So hard to wrap my head around. We were told she would die before her first birthday. I didn’t think she’d ever have another birthday. That’s why I named her Noelle. To commemorate the one birthday she’d have. But now, God willing, she’ll have many. Wow. As I’ve said all along, she and God have their own thing going on.

When Abigail looks at you, she gets to your soul. It’s like she knew all along. Those eyes, that hint of a smile, she’s totally saying, “I told you so!” Every little cute normal baby thing made me cry today. One big, toothless baby grin, a sleepy sigh, open mouth baby kisses, her wide eyed curiosity, grabbing and holding tight to mommy’s finger, working so hard to get her fingers and thumb into her mouth, her big sister kissing her “boo boo”. In awe of today. In awe of the future. There are just no words. Today we celebrate – 11 weeks of life, two weeks tumor free, and many more adventures to come as a family of four!

Moving Mountains

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Abigail’s story has sparked a lot of questions, in myself and from others. I’ve been asked by multiple people if I thought God has changed the course of Abigail’s life. Did she really start off with a cancerous tumor and He turned it into something low grade halfway through? I’ve wondered the same thing. If you research what they think this tumor is, a DIG, it sounds like that’s what it does… Starts out looking so much like a malignant tumor our oncologist said even pathology reports (had we done a biopsy at birth) could’ve come back falsely positive for a terrible cancerous tumor. And then it just stops. He said like a switch is flipped. It just stops growing. So is that what happened? Was it low grade all along, a DIG or something similar, or did God change the course of a bad cancerous tumor that would have killed her? Obviously I have no idea nor will I ever know. But I feel like we cannot twist Gods arm into doing things for us, even if they are awesome things like saving a child’s life. And if His arm could be twisted, the amount of faith and prayer put forth on our part would not be the thing to change his mind. This could get deeply theological and I’m not about that, talk to my husband if you want to debate, but I think if God acted based on how much faith we had or how much we prayed, we’d all be screwed. This turns God into a God of works – if I do this, God does that. And that totally negates the concept of grace, God does things because He is God not because we do anything to deserve it. As I’ve stated before, I’m not much of a “name it, claim it” person. And I didn’t pray a whole lot for Abigail’s tumor to go away. I mostly prayed for help to get through the hard stuff and for her not to suffer. I truly did not believe Abigail would “be healed” in the sense that we use the term. I thought God’s plan was to use her brief life here and take her to heaven. I had great faith, not that we’d get a miracle of tumor going away or being benign, but more faith that God is who He says He is, regardless of what happens. So with that confession, it doesn’t make sense that God would have healed Abigail based on my faith and prayers.

That’s not to say prayer and faith are not important. But the point of prayer isn’t to just ask God for things you want. That’s part of it, a huge part for most people, but not the purpose. I believe the purpose of prayer is to build relationship with God and change yourself. Prayer is simply talking to God. When you talk to your friends, you do that because you like them and you like hanging out and building your relationship. Not because you want them to do 1000 things for you at any given moment. If that’s the basis of your relationship, you won’t have that friend long. Prayer certainly changes things, it brings you closer to God, changes your heart. Helps you maybe understand things a little better, especially when He doesn’t answer that prayer in the way we desperately want Him to. And faith, I believe the foundation of faith is belief in God and our Jesus who sacrificed himself on a cross so we could be free. With that kind of faith, everything else falls into place. And you can indeed “move mountains”. But only if God needed to move that mountain to achieve what He wanted to achieve. The mountain doesn’t move just because. Abigail’s mountain was meant to move. I hope that makes sense. Again, this is what I think, you may disagree and that’s ok. That’s what makes life so colorful.

I also believe God knows the beginning from the end. We, as mere humans, do not. None of this was surprising to God, although it was very surprising to us. I don’t think He changed Abigail’s ending, he knew this was going to happen. I think this is just her story. This is her miracle. We all have miracles, every day. Some are just more dramatic than others. Last week, Abigail’s miracle was that they removed a tumor we all thought would kill her. Today’s miracle was that she stopped crying long enough for us to go outside for a bit. And I got to sit in the sun with her. Miracles. They come in all forms. Maybe you got a dramatic miracle like Abigail. Maybe you got an extra hour, day, week, month or year with a loved one that you didn’t think you’d have. Maybe you got out of bed today. Maybe you saw the sun rise, or a hummingbird, or a rainbow. They are all the same. All miracles, proof of God’s unconditional love for us.

So what happened with Abigail? We don’t know. I’m not even going to try to guess. It really doesn’t matter. All I know is that God is in her life no matter what the outcome is. And since we get to keep our daughter for now, I pray He helps us to be great stewards of her life so that souls come to Him through her. She is His mighty vessel here on this earth. And that I hope He opens our eyes to all those tiny miracles we so often take for granted.

God is Good but not because He healed Abby

After the great that has happened this week many people have proclaimed how good God is. We completely agree with them but not for the reasons they think.

God is good because He sent His son to die for us. He has given all mankind the opportunity to fellowship and spend eternity with Him. Thus not in hell. That is why God is good! Not because He did or didn’t do something (See The Will of God). This is the foundation for our faith and is the rock that should never change. His goodness can’t get greater. There is no extra credit if you are perfect to make you extra perfect. God is good.

As we have stated since our birth announcement, God is good not depending on what the circumstances around us look like. My heart breaks for all people (christian and non-christian) who tie there belief in God to the outcomes of life. That isn’t biblical and leads to very dark places and perverted versions of a religion. Not Christianity. If you are at that place where you are upset with God because of a loss, misfortune or life in general. Pray for God to give you His perspective and reason for the source of your pain. You are God’s child and there is nothing that you can do to bring Him closer to you than He already is. He wants you to bring that sorrow to Him. It breaks His heart to see you go through it and He has the perfect medicine for your ailments.

Prayer has been the most vital part of how Erika and I have been able to walk through all of this. We have tangibly felt God’s grace every single day. That grace is what has give us the perspective and fath to trust God, no matter the outcome. We have always known His goodness and arrived at the point where our belief in that goodness and love would never be shaken even if Abigial died. We are so very thankful for her life! Did we pray for Abigail’s healing every day? Yes, of course! We wanted our child to be healed. But we don’t think that 1 million prayers healed her. We don’t think prayers twist God’s arm to do so. If they did, then we (all Christians) would be responsible for all the bad things happening on the earth because we didn’t pray enough. Put that in your theological pipe and smoke it!
We believe those prayers softened our hearts to the Sprit of the Lord to prepare us for the journey ahead. Prayer is meant for us to have a clearer understanding of God’s plan and for Him to soften our hearts to His love, grace and mercy.

Does God hear our prayers? Of course! Does God answer prayers, yes but not always is the ways we want or expect. His answering of prayers depends on the heart of the person praying and if it aligns with the plans of God. The difficulty in this is that we don’t even know the true plans of our own heart, only God does. Is it ok to pray selfish prayers? Yes, God already knows your thinking them so speaking them to Him isn’t going to repulse or surprise Him. It’s the exact opposite! It brings you to a level of honesty in your relationship with Him that wasn’t there before. That veil has been pulled away from your relationship and God now has an opening to communicate with you.

“What happens if she dies?”

I’ve thought about that a lot over the past months. I’ve stared into the abyss of emotions of a child’s death. I would be heart broken beyond belief and would yell and scream at God but deep down I would know that He didn’t cause her death and He didn’t want all this to happen, but He had a reason to allow it to happen. What that was I many never have know but I know He does…

I wrote that many weeks ago before I knew what would happen. Now I have the just as many questions. Why is she alive? What makes her special? Why our family when so many others don’t getting the good news?

What I do know is that this will produce in me a thankfulness for my family, life, community and God greater than ever before. And I’ll need much more grace, love and mercy to find the answers. But in the end I may never know but I’m sure He does…

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.