Originally, when I sat down to write this post, I had planned to offer another excuse for why I’d been absent from blog-land for so long. I was all set to tell you about how I’ve made an effort to rekindle my relationship with Art, and that when I started to learn Adobe Illustrator, I became slightly obsessed with it and did it non-stop…ultimately neglecting my blog. I would tell you all about how much I loved drawing as a kid, but I gave it up because I didn’t feel I was good enough. This post was supposed to be about how I’d finally realized it doesn’t matter if its good enough, and I would even show you one of my first digital drawings as if to say “See! This is what I’ve been doing…I got a little bit obsessed with learning illustrator, and that’s all”. When I started to write an explanation of the picture I had drawn, I noticed the theme of the story kind of shifted away from my newly found obsession with Illustrator, to the subject of the picture.
I had a birthday last week for which I received an awesome wacom tablet for drawing and graphic design. I was so excited about it! I needed to learn how to use it, so I decided to use some photos for artistic inspiration. Here is one of the first things I did with my new device:
This is a sketch from a photo of my sister-in-law, Amy, and my nephew, Adam shortly after he was born. I wish I could say that I drew this completely free hand in 2-3 minutes while they were sitting there…or better yet, miraculously produced it off the top of my head, but I cheated. I used a photo.
There was something so touching and moving about this photo that compelled me to use it. There is so much love in it. It was taken just after Adam was removed from his breathing machine, and he wasn’t expected to make it.
Amy had had a normal full-term pregnancy. We were all really excited about Adam, because she and my brother already have two super-cute, amazing kids. I love being an Aunt. I don’t have any kids of my own, so I get super excited about them producing baby cuteness.
When the time came for Adam to be born, there were some complications and he was born via emergency C-section. He wasn’t breathing and had to be intubated right away. His head was also a bit larger than normal, but that was probably okay. It was likely just a bit of hydrocephalus…fluid in the brain, and that is treatable with a shunt (insert the comic relief of poking fun at Uncle Dave’s larger than average head…the dude is really smart).
A closer examination revealed, however, that Adam didn’t have just a little bit of fluid in his brain. He had a condition called hydranencecphaly. He had so much fluid in his brain, that he essentially didn’t have a brain. Well, he had a brain stem, but the space that would normally be occupied by his cortex was completely filled with fluid. He had almost no cortical tissue, and it had somehow gone undetected during Amy’s pregnancy.
From my understanding of his diagnosis, he was not expected to live without the aid of a machine, and even with it, he wouldn’t make it very long without a cortex. This news was a shock to my brother and Amy, and so sad. There was absolutely nothing they could do. The whole situation was heart wrenching and mind boggling.
So, preparations were made. My brother and Amy contacted their families, and made arrangements to have Adam baptized in the hospital before he was taken off the machines. We all came from various parts of the country to witness Adam’s baptism and to support Christopher (my brother) and Amy.
After the service, Adam was extubated as Amy held him. We all stayed for this. Almost 20 of us clumsily draped in NICU hospital gowns surrounded Adam and Amy as he was freed from the tubes. I don’t remember with 100% certainty, but I think it was right around that time that the photo I used for this drawing was taken. As Amy was holding Adam for the first time without tubes, my 4 year old niece spontaneously started to sing”Twinkle Twinkle Little Star” to him. She is a very loving child. Soon after, everyone joined her, and this spontaneous, choked-up, probably off-key chorus of “Twinkle Twinkle Little Star” echoed throughout the NICU. This turned out to be a serious challenge for my efforts to remain tear-free. I cried. And I couldn’t seem to stop crying. As I looked around, I noticed that everyone else was crying, too. Everyone but Amy. She just held Adam and comforted him with more love than I have ever seen in my life. She held him to comfort him as he died. Just thinking about that still makes me cry.
As it turns out, Adam did not pass away that day. He held his own for almost a month…eating and breathing like a normal newborn. They were even able to bring him home from the hospital and they celebrated Christmas with him. And, when Adam did pass away, he passed away at home, surrounded by a family who loved him.
After Adam passed away, I wanted to write something about it for some reason, but I didn’t know what to write or how to write it. I was worried about so many things. What if I say something wrong? Would it offend anyone? Is it my place to write about this? Do I even have a right to feel sad? I couldn’t figure out how to get my thoughts and feelings about it straight. So, I downed a couple of spirited beverages and wrote a post about the Thinker -too-mucher thing that lives in my AMYgdala, instead.
When I noticed this post was turning out to be more of a story about Amy and Adam, than it was about my drawing, I called Amy and asked her if she would mind me posting it. She graciously gave me her blessing to post it, but I still feel a little nervous. What if it is just too much? Am I infringing on their privacy? Their grief? I am fairly certain I did not describe the medical machinery accurately. I’m pretty sure I spelled “EXTUBATE” wrong. I’m not very good at dealing with, or writing about sad events, and I KNOW there are grammatical errors scattered throughout this entire post. But, as I write this, I am just now wondering how much those things matter? Writing is funny that way. It seems to magically bring things to light. Imperfection didn’t stop Adam’s family from loving him, or from giving his life meaning. And that puts so many things in perspective.
Lucky Wreck 
This is perfect Amy, thank you for sharing Adam’s story 🙂 Love you!!
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Thank you so SO much 🙂 Love you, too!
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This is great Amy! As hard as it is to read, I love to hear and remember Adam 🙂
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Thank YOU, Auntie Cole! That really a lot to me, coming from you 🙂
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Your version is so much better than mine. It is totally without pretense, totally from the heart, and totally perfect. I am so proud of your drawing AND your writing. This is a winner!
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Thank you so much, mom. ❤ I don't think it's at all better than yours! In fact, any urge I've ever had to write something came from you. Thank you!
I feel like Christopher, Amy and Adam (and Carlee and James) could inspire 800,000 different stories…each one just as good as the next…just all different 🙂
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What an incredible story and how fortunate for Adam that he was given such loving parents during his brief, but incredible life.
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Thank you so much for that josefkul. Thank you for taking the time to read and share these thoughts 🙂
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Amy, this picture touched my heart from the first moment I saw it. Then I read what you wrote and the sadness and then joy filled my heart. I remember the night you all asked us to help pray for God to take Baby Adam home, I’ve never prayed so hard in my life!
Chris and Amy are amazing people and their two precious children hold my heart in their tiny hands. I wasn’t able to meet Baby Adam, to hold him, kiss or hug him, and I’ve struggled with those feeling for awhile. That being said, your words started to heal my heart. Thank you for writing so beautifully about the little angel. You are also an amazing person and I am blessed to have you and your family in my life!
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Thank you SO SO much, Sara! It goes both ways. We are all blessed to have you! Thank you for loving the people I love so much, too! 🙂
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This is very sweet. Thank your brother and sister in law for allowing you to share. They both sound amazing as does Adam.
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Thank you for taking the time to read this and comment, Ben 🙂 I have been feeling a bit cyber-sappy lately, but shall return to my dorky (and maybe bitter) ways in no time! You are the best. For reals!
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I had to step out of my bitterness for this one, because it was just so emotional and heart breaking. I hope you and your family heals. And I’m glad you are back to blogging. Don’t get discouraged!
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Your post is perfect. I loved the end the most, “Imperfection didn’t stop Adam’s family from loving him, or from giving his life meaning. And that puts so many things in to perspective.” beautiful.
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Thank you MissFourEyes! I can really relate to your “What if it sucks” post when I hit “publish” on this one… *hyper-scrutinize high five* And, I really appreciate you sharing that because it kind of makes me feel just a LITTLE bit braver knowing I’m not alone in the excessive self-scrutiny thing. Wait…is “braver” a word? AAAAAHHH! 😀
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As soon as I reached the part where your niece started singing Twinkle Twinkle Little Star, I started to cry as well. What a sad experience for your brother and sister-in-law, and for you and all your family! My heart goes out to you all. I think it was lovely the way you began this piece of writing, as if it was about why you hadn’t been writing your blog, then went on to talk about the obsession with the drawing tool and the picture, and then finally, to the story behind the picture. I suspect that your nephew’s death may also be a cause of why you were not able to write your blog for a while so it is all connected. I hope you and your family find comfort and hold onto that memory you’ve captured for them all.
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Blathering, Thank you for sharing your thoughts about this with me. I was really touched that you felt along with us. It felt weird… taking a different approach and not writing from a humorous standpoint, so I really appreciate you taking the time to read….AND I’m going to have to start making fun of myself for being sappy and having NO idea what to say when I feel sappy! ❤
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Amy, it was hard to get through that post without breaking out a box of tissues. However, I think it’s the best post you have made. There was such a difference in that post because instead of writing what was in your head you wrote what was in your heart. This is such a sad story but at the same time, I believe there is good in everything. I’m sure the babies life gave everyone a different perspective on their own life. Many people probably stopped taking those they loved for granted and others were confronted with the feeling of how precious life is. For you it sounds like you learned that imperfections are OK. Everyone has them in some shape or form. The drawing you made is great. There is a lot of emotion in it. Keep drawing. Keep writing. You are brilliant. Some of the most famous people went through a lot of pain emotionally or physically to achieve their best work. Put every emotion you can into your writing. ❤ If readers can feel what you are saying they will become connected with you and follow you anywhere.
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Jen, Thank you SO much for your kind words. I feel like YOU put your heart into your response, and that means a lot to me. Your words make me want to keep going…and keep trying to write things from new perspectives. I was kind of (really) nervous when I hit the “POST” button for this, so what you’ve said has extra meaning.
Also, it’s pretty difficult not to be amazed by my brother and Amy. I feel lucky to have them. And, lucky to have you and your encouragement, too 🙂 ❤
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And also I would like to add that I don’t know if you are a Christian, but from my personal beliefs I believe in the Lord and heaven. I feel assured He was in the room that day the picture was taken. That He had a reason behind you taking it that you were not aware of at the time. And that when the time came, He took the child peacefully into His arms to care for until his mother could get there. I wish the family peace, love, and comfort.
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Thank you, Jen. You are such a loving person and a wonderful friend! And, I believe the Lord was in the room that day, too…and every day since. ❤
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Beautiful post, my lovely friend. Thank you for sharing.
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Thank you so much for taking the time to read it, Hook 🙂
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Oh wow. I’m a bucket of tears over here. Where to start.
First of all, you’ve brought so much life and character to everyone who sang “Twinkle Twinkle Little Star” to Adam that day- this is an incredibly moving tribute, Amy, and I’m so glad you found the courage to post it. If you had simply “posted about Adam and his struggle to survive” or even “Amy’s brave fight to be strong” or many other subjects, it wouldn’t have the same humanity that you gave it- wrapped up tightly in your own insecurities and frailties. I’m such a fan of your writing- the style of it- I’ve never seen anybody write with such heart and humanity.
Thank you again for sharing this- I know it wasn’t easy! And thank you too (Amy) for sharing your Adam with all of us. xo
Some little twinklings stars are so special that only Heaven can hold them…
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Thank you so much for this comment monochrome. Sometimes, when I am battling an overdose of my own frailties and insecurities, I look back at some of the things you’ve written on your blog, and to me, and helps me to feel better about who I am. I can’t tell you how much I truly appreciate that! Thank you 🙂
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Man oh man- I could use a big dose of that right about now (do I have it? Is that what you’re saying?!) I have never wanted to give up more in school. It’s so frikking intense (as you know) and I have to keep telling myself to just push through it because quitting isn’t an option.
You’re a lot stronger than you give yourself credit for being, Amy. And another thing- you’re able to be so funny with everything that usually makes many other people bitter. THAT is a special quality because it’s not easy to laugh when you’re going through 10 kinds of hell, you know? But yet you do and you give that gift to others too. Remember that about yourself- you bring smiles and laugh to those around you. That’s special. 😉
Hope your day is a good one!
xo
-B
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Wow! You captured something so beautiful not only in the drawing, but also in Adam’s short life. All lives seem to be short whether they last a month or years there never seems to be enough time to celebrate and share.
Thanks for sharing this experience. I’m so glad that you are posting again!
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Thank you so much! Even though Adam’s life was short, he was so loved and such a strong little guy, I think he made quite an impact.
Thank you for taking the time to read and comment 🙂
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I loved my Wacom tablet back in the day, even though I only had a tiny one.
Very good drawing! (and very good story… definitely touching to read for a brain guy like myself)
I think Becky better watch out… we have a new “artiste” in our midst!
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Hahaa! Thanks Dave! I didn’t know you had one, too! I really like it, but I STILL have so much to learn and get used to!
Thanks for reading and commenting. Always love hearing from you!
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Oh my..this was beautiful and so real there were tears in eyes reading this. Thank you for sharing Adam’s short beautiful life.
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Thank YOU Monica, for taking the time to read and share your thoughts. That makes art and writing…perfect or not…all worth while 🙂
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Everything was perfect in concept… Your writing. Your drawing. And the perfect love for Adam.
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You just gave me a thought…maybe it’s the concept that matters most 🙂 THank you Mustang.Koji 🙂
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Oh-oh…! 🙂
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