Thoughts from the Middle of the Night

I was reading a book, The Forgotten Garden by Kate Morton (a great read, by the way, I HIGHLY recommend it), and in the book, one of the main characters gives up her baby. Her description of pregnancy made me think back on my own pregnancy.

I think back 0n the 287 days that Noah grew inside of me and I remember how I used to spend a lot of my time thinking about him, what he’d look like, who he’d grow up to be. I’d rest my hands on my growing baby belly, looking at my ever-changing body. I went through periods of sheer fear (telling first Caleb, and then our parents that I was pregnant), elation (we were having a boy), disappointment (I originally wanted a girl), annoyance (everything and everyone I encountered), pride (“When are you due?”), contemplation (what are we going to do?, how will we raise him?), and everything in between.

I think back to those times, when Caleb felt the first kick, and when he put my hand on my stomach so that I felt it too. There was so much promise, so much hope. For the first time in a very long time, I was happy. I was able to do what many women can’t, and I did so with relative ease; I was able to carry a baby to term, a seemingly healthy baby.

The character’s description of her pregnancy brought all that back for me, but when she describes the love she feels for her daughter in the first few days of her life, it reminds me of how I feel like I haven’t really bonded with Noah yet. He still doesn’t feel real. I think it has something to do with survival. I spend every day thinking that his seizures are going to come back, that any minute he’s going to stop breathing (apnea was a comrade of his seizures). I’m not bonding with him as I should because I’m afraid…..I can’t get too close, or if I allow myself to, something will happen and he will get ripped away from me.

That thought terrifies me. As grateful as I am that he didn’t pass away when he was supposed to, just 6 and a half weeks ago, I feel like it’s all too good to be true, in a sense. He can’t have gone from “brain dead” to “wait and see” in just 4 short days. It’s like a trick; an illusion of health.

I hate living like this, but it’s reality. I go through my day knowing that no matter how healthy he looks on the outside, Noah is one very sick little boy on the inside. I hate living with the guilt of “If I had just gone for the induction a week early…” or “If I would have been better at breathing with the oxygen mask…”. I hate the “what ifs” almost as much as I hate the ever-present uncertainty.

I also think back to the day he had his seizure. After the initial news hit, I didn’t cry again until we were on the road to Edmonton. I spent the entire 6 hours between his seizure and us finally getting on the road completing the necessary series of tasks needed to get us there. I had a clear, concrete plan of manageable steps that I could take. I think it helped me because it was something I could control. It was me that tracked down the nurses and doctor I needed to get discharged, I got in contact with the social worker at the Stollery, got us a hostel room for the night in Edmonton, set up a stay at Ronald McDonald house for the following night (which we didn’t end up using), etc. I had a check list of things we needed to do; that I could deal with. There was no uncertainty, just “Get to Edmonton…..and then we’ll figure things out”.

Now that my entire day is clouded with uncertainty, it’s a bit like being stranded outside in a storm. You have no idea what’s going on, but you just try to make it through and weather that storm.

It makes me sad that I haven’t bonded with Noah as much as I should have by now, and it makes me sad that I have a shield up when it comes to him. People ask how he’s doing, and of course I fake-smile and say “better”, and when they say something like “I’m so glad he’s alright now”, I fake-smile again and try and pretend like a giant weight didn’t just appear in my throat. Because the thing is, he’s never going to be “alright”. There’s always going to be that thought, “Is today the day?”, for literally the rest of his life.

I’m also fairly tired of people calling him a “miracle”. I know that you all mean well, but it’s starting to grate on me a little bit. When the doctors tell us that they have no idea what his brain damage will appear as or if he’ll have another seizure, please do not make it out to be like my child is cured. HE IS NOT CURED. HE IS NOT PERFECTLY HEALTHY. HE IS NOT “NORMAL”, NOR WILL HE LIKELY EVER BE “NORMAL”.

And that sucks, it really does. I have so much fear; for him, for me…I wish that I could just be a normal, scared new mom, and not a new mom terrified that her son is going to die at any moment. I can’t help but feel like maybe I deserved this, somehow. I had a perfect pregnancy, and then at the moment that it’s all supposed to come full circle, that moment of his first breath, first cry, when I hold him against my chest for the first time, his cord still pulsing…….that moment was taken away from me.

For that I feel cheated. The whole time, I had expected my labor and Noah’s birth to go the same way as my pregnancy had gone, but PSYCHE, nope, sorry sweetie, you lose this round. I feel so much anger because of that.

I’m angry at myself, like if I would have done something differently, he WOULD be a normal, healthy little boy. But I’m also angry with whoever it was that decided that I’d be dealt this hand. What did I ever do? Why is it that crackheads and prostitutes can go on and have perfectly healthy babies, while I, who did not even have a SIP of alcohol my entire pregnancy, get the short end of the stick in the life lottery?

It. Is. Not. Fair.

You hear the cliche, “Life isn’t fair”, and really, no shit. Noah is living proof of that.


9 thoughts on “Thoughts from the Middle of the Night

  1. I am glad you enjoyed the Forgotten Garden, I really liked it too. I will lend you the next book by Kate Morten – The House at Reverton – it’s pretty good too.

    I feel for you Olivia – it bugs me too when people say it’s a miracle. A miracle would have been if you had had the “perfect” labor and Delivery, and had a pink crying baby nuzzled up to nurse minutes after he was born. The absolute terror you had to endure, and all that little Noah had to go through to get where he is now (which is not healthy, and “ok”) was no miracle. Every day like playing mine sweeper, treading softly, peeing quickly, sleeping lightly, hoping that Noah will keep fighting, keep winning, and the seizures will remain an aweful memory that you will never have to relive.

    We are waiting with you, hoping the best for Noah, whatever that may be, we will take it. And we will all love him just the way he is, for who he is.

    “But I’m also angry with whoever it was that decided that I’d be dealt this hand. What did I ever do? Why is it that crackheads and prostitutes can go on and have perfectly healthy babies, while I, who did not even have a SIP of alcohol my entire pregnancy, get the short end of the stick in the life lottery?”

    This got me thinking, and I wanted to share.

    God didn’t do this to Noah, or you and Caleb.

    James 1: 13 – When under trial, let no one say, “I am being tried by God.” For with evil things God himself cannot be tried nor does he himself try anyone.

    Job 34:10 – Far be it from the true God to act wickedly, and the Almighty to act unjustly!”

    Ecc 9: 11 – I returned to see under the sun that the swift do not have the race, nor the mighty ones the battle, nor do the wise also have the food, nor do the understanding ones also have the riches, nor do even those having knowledge have the favor; because time and unforseen occurence befall them all.

    Who Is Responsible?

    1 John 5:19 – The whole world is lying in the power of the wicked one.

    So who is the “wicked one” and why would God allow him to have power over the world?

    Noah’s story, in his short little life that has so far been filled with so much pain and fear, leaves us all with many questions. The Bible actually has satisfying answers. I suppose there are questions that need answering before you can even look to the Bible for hope. Were we created? Did we get here by evolution? Is there a God? Does he care about us? I promise you finding the answers to these questions, will give you peace. If you aren’t satisfied with the answers you are given, keep asking. If people are giving you answers based on their religious beliefs, get them to show you from the Bible what they believe.

    Just want to help, and this is the only way I know how. I have found peace in the answers from the Bible, and real hope for the future. When someone I love dies or is very sick, I am sad like anyone else would be, but I have found comfort, and I can’t help but want to share it.

    Hugs to you 3 – I miss Noah so much, and I am thinking about you all the time. You are all in my prayers daily.

  2. I am bawling as I read this.
    Noah IS a miracle in his own right. His sole purpose for the time being, is to grow strong, and touch the lives of everyone who hears his story. I can’t imagine the heartache and uncertainty your family has gone/is going through, but you have to think about how your situation is helping quell the fears and uncertainties of other families who are experiencing the same things. The other moms in your online groups, and the moms you met at the hospital-how alone they must have felt until meeting you and Noah, and realizing they are not the only ones dealt the same hand. Also, there was absolutely NOTHING you could have done different. That cord could have been wrapped around his neck a week earlier and the same thing could have happened. YOU DID EVERYTHING you could do in your pregnancy. Don’t EVER feel like it is your ‘fault’.
    It is an unknown how Noah will develop in the coming weeks/months/years, but we must remain optimistic for him, and not lose hope in this tiny, triumphant human! Just think about how far he has come in his 6 short weeks. It will take time, and lots of love and support, but I believe he will make wonderful progress.
    You are such a beautiful, strong woman, Olivia, and my heart is so heavy for you. Please remember that there are so many of us rooting for you guys, and it is okay to break down once in a while. I am here for you. Anytime. For anything.

  3. I think all of what you’re feeling is “normal”…in my uneducated in these types of things opinion. I sure hope you won’t always feel like it’s your fault though…because there is no way for one second that I believe you are at fault in any big or little way.

    Adding the book to my “to-read” list…

  4. I am crying now as I read this. I’ve been following your blog since I read about it in Nyana’s blog, and I eagerly check for updates every day. I’m always looking for updates on how well you and Noah are doing, hoping one day to come on here and find the all clear from the doctors… something saying they were completely wrong and “surprise”, there never was anything wrong. This post really brought it all back to reality for me – that that update will likely never come.

    I’m a mother of 4 children. My youngest was a colicky baby, and I didn’t bond with him for AT LEAST 2 months. I was terrified that his colicky behavior was a statement of how “happy” he was to be with us. I thought maybe he knew what I feared in my heart – that 4 kids was more than I or my husband had the sanity to handle… that I wouldn’t have the energy, heart, or love to do it all. I thought that one day I would wake up and he would be dead. I thought he would hate it so much with all of us that either he or God would decide we weren’t good enough for him.

    I know that this is NOT EVEN CLOSE to the situation you have been dealt. I cannot fathom what you have been through, and I can totally see how you would feel like it’s surreal. I get that you are afraid to love him, for fear of losing him. The truth is – we can ALL lose a child on any given day. The thought scares the living daylights out of me, and the fear with my youngest was SO strong, it felt REAL.

    A friend of ours had a daughter who was diagnosed with a condition where her muscles didn’t grow when she was 2 weeks old. She passed away at 4 months of age. The oldest she could have lived was 4 years old. There was no treatment – there was no hope. Their lives were shattered into a million little pieces the day she was diagnosed, and again on the day she died. This was their advice: Let him in. Love him. Let yourself go into the “what-ifs”, but finish with a “but not now”. You deserve (and as does he), to know what the mother/child bond and love feels like. YES – it’s overwhelming. YES – it hurts more than you could ever vocalize. YES – you will never be the same. You will hurt and will never recover when you lose a child, but you won’t hurt any more if you love him.

  5. Big hugs to you, my dear. Big, big hugs. Like everyone says, nothing you did makes this your fault. Noah chose you and Caleb, for however long he’s with you, for whatever he grows into, to give him the best life you can. I’ve spent hours and hours awake at night playing the “what if?” game, and it’s a vicious cycle that doesn’t help anything.

    I’m angry for you, for what you’re going through, and I understand more than many that life just isn’t fair. But keep giving him all the love you’ve got and then some, and you’ll get the greatest reward out of it, for as long as you get to love him, and then some. I’m here any time you want to chat. ❤

  6. This post reminded me a lot about how I felt after Odin was born. I was so angry that my body couldn’t do what it was supposed to. That I couldn’t grow my baby without harming him. I remember not being able to see him for the first 5 days of his life and being terrified every day of that that he was going to die and I would never get to see or hold my baby. The first time I held him I knew I loved him, but I didn’t feel like it was that “special” love between mom and baby. Odin was very lucky, he thrived and came home so fast. But it took me months to finally connect with him. I felt like Kyle had more of a bond with him than I did for the first 3 to 4 months. It takes time, it’s not like they tell you in the happy little movies, that you have that instant bond with your baby.

    All I can say is don’t think about what might happen, it will prevent you from ever being as close to your baby as you want to be. Take it one day at a time. The bond will happen and one day you’ll realize that it’s there.

    I know the “miracle” baby thing can be annoying. My mom calls Odin that all the time. It bugged me at first, but I take miracle in my own form. For me it has nothing to do with god or religion or any of that. He’s my little miracle because of the way he fought his hardest to be with us. Noah did that, he decided he liked the looks of you guys and he was sticking about no matter what the doctors said. Be proud of that! Your little guy is so strong. Now you have this amazing opportunity to get to know Noah for all he is and will be.

    Take your time, love your baby, and one day you will be in love with your little man:)

  7. Your post made me cry, Olivia. I can’t imagine how you must feel or what you and Caleb must be going through, but just know that we’re here for you and you can bare your worst thoughts to us without fear of judgment. Love & hugs!

  8. Very honest and real post. I think of you and Noah everyday. There is nothing I can do to help you….however I do hug and hold my little boy even more thinking of you and Noah. He has made a big impact on many of us already in his life.

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