Once upon a time, I was convinced that he looked just like me. Now I see glimpses of mannerisms that are spot-on Jamin, while he grows into his own person.
It blows my mind that he’s twelve. Twelve and a half, to be exact. Almost-a-teenager, if you ask Aiden. It was in the middle of any regular old school day, but a special one for us. He was getting a little bit of that rare only child time as our oldest, when the sunlight in our favorite Mexican restaurant caught the blue in his eyes. He laughed, and went in for another scoop of queso.
The MRI machine was loud.
I don’t think I was prepared for how loud it would actually be. I’d just filled out a questionnaire about metal situated in body parts before accompanying him, and pictured it yanking at some unknown implant or at the very least, my permanent retainer while I stood there. Apparently MRI’s are highly magnetic? It’s funny the flaming hoops your mind will jump through when anxious.
When he was a baby, and then a toddler, they’d given him a sedative and put him under, and his father and I had all but drawn straws. Since they’re only allowed one guardian, the MRI had been dad. I don’t remember going back with him then, as the CT scan was what I was present for. I’ll never forget that juxtaposition of a little baby in a huge, round, looming scanner.
Now, Aiden’s lanky legs stretched out to his blue sneakers, from that giant donut of a tunnel. The machine’s beige face was decked out in friendly looking, off-brand under the sea characters. I held on to his ankle to let him know I was there, actually surprised that he held his head so still in the cage-like holster. His headphones in place, my own blue foamy plugs they’d handed me, shoved cautiously into my ears. The vibrations nearly made him numb. And the pros in matching scrubs stood on the other side of the glass, seeing results before I would.
When he was about six months old, I remember peering over the pediatrician’s shoulder and looking at the arches on a growth chart. A fog settling over me while the doctor showed me his height and weight lined up where they were supposed to be, but his head couldn’t be charted. Always a little large for his age, his head suddenly jumped in size. And it was the jump in between measurements that they were concerned about. Aiden’s head wasn’t lining up where it should.
The pediatrican scheduled a CT scan. We went, and then waited on results. I remember working on a painting in our garage to keep myself occupied while Aiden napped in his nursery. Jamin peered from the door of the house wearing a serious expression; the news wasn’t what we’d expected. The CT scan revealed fluid on his brain.
We were referred to a neurosurgeon at Children’s in Birmingham.
There are cycles of thought that one goes through when their safe, shoebox diorama of a life suddenly has the lid placed over it, and is jostled out of whack. There’s something about the word neurosurgeon that sounds like the most serious of all surgeons – The word is even a mouthful.
I remember that first appointment clearly, when the neurosurgeon walked into the exam room. I’m not sure what I’d pictured – perhaps a reassuring 60+ year old, with a lot of years under their belt? I remember feeling quite astounded that said neurosurgeon couldn’t be much older than us. I kind of wondered if he knew what he was doing – Cue the mom paranoia. While I held a baby in my lap, the diagnosis was, well, more big words.
Hydrocephalus, which meant that he had fluid on his ventricles that can lead to pressure build up, and possible brain damage if untreated.
And Chiari 1 malformation of the brain.
This meant a lot of things. That his brain’s tonsils {his cerebellum} descended into his spinal column. It could affect him later in life, when he hit puberty and pressure was added to those tonsils through excess growth. So we had a lot of possible outcomes: He might have brain surgery one day. He might have to have physical therapy to learn how to use his limbs and muscles again. He might have a shunt placed to drain excess fluid. He could need surgery to release pressure on his brain from fluid build up… the possibilities were piling up.
Or, this could be Aiden’s “normal”. It was literally a wait and see.
It was the first time in my life to realize, that grey areas exist. I was so anxious about his future. Every parent wants that seal of guarantee and approval that their child will be healthy. It was a real wake up call that we’re not guaranteed anything. I went from denial to bargaining and all the the things in between. I purchased a book on Chiari, that ended up with creases and well worn, underlined earmarked pages. I worried for my son’s future, until we settled on wait-and-see acceptance, while we educated ourselves.
With each followup appointment, we made the trek to Birmingham, and kept an eye on those symptoms. And we really started to trust that neurosurgeon who actually knew what he was talking about {despite not being a grandpa}. Each appointment eventually evolved from every three months, to every six months, then once a year…. they were further out, simply a routine. Until one appointment, three children and a house later, we received a bit of an all clear. Aiden was four.
I remember breathing a little easier. We were just to keep an eye on him, watch for symptoms. And return at the age of twelve.
The age of twelve seemed like an eternity away. Over time, it became easier to push it into the back of our minds, and accept it all as his normal. But you’d better believe that every fever spiked, {He’d once had a febrile seizure when I was pregnant with Emerson, that landed us in the hospital and nearly sent me into labor} every little trip over the stairs, every headache, every eye appointment was secretly filed away under my mommy radar – just keeping tabs. It never truly went away. It was always in the background.
And then, as parenting goes, I blinked. He was twelve.
Aiden, was none the wiser. He had absolutely no memory of the scans, checkups and follow up appointments. So we never bothered to tell him. There was no reason to make a fuss over something that had eventually kind of faded into the background of our lives. Then the day came when that familiar appointment reminder card arrived in the mailbox. We made the explanation as casual as possible, so that he had nothing to worry about. He’d be going in for an appointment and an MRI. Of course, we’d be right there with him, every step of the way.
It’s funny how things work out sometimes. Over the years, his neurosurgeon moved from Children’s in Birmingham, to Vanderbilt Children’s in Nashville. I remember feeling disappointed when we received the news, still living in Montgomery years before. He is now {impressively enough} the Chief of Pediatric Neurosurgery. With lots of other titles and letters that I can’t really possibly know what they stand for, and years of work, research, and sacrifice to back those titles. As it turned out, he knew what he was talking about, after all… and when the time came, we asked if we could transfer under his care. Little did we know that years later, we ourselves would be living in the same city.
So after the MRI that day, we had a standing appointment with him, to review the results. We traveled the maze that is a children’s hospital, with shiny floors and bright colors, all the while reminded of the little patients that reside there. We arrived at his office, and waited.
“Is this a blast from the past?!” When he entered the room, he smiled, remembering us.
“Well, here we all are,” he said. “A little older, a little wiser,” and we laughed.
There was another exam that reminded me of Aiden’s last: touch your nose, follow my finger, walk on your toes…
Then he pulled up Aiden’s scans: His last scan at 4, on the right, and his latest, just an hour before, on the left.
The new scans revealed this:
His fluid on the brain, was now completely gone. His ventricles clear.
His cerebellum {tonsils of the brain} had ascended back into his skull, right where it was supposed to be.
“Congratulations,” he smiled at us. And then, “We do see this from time to time. His head literally corrected itself.”
I think we’d expected a check-in of sorts, where they informed us of his brain’s status or something. With a game plan on when to check in again. Or a good defense to look for symptoms in the future and what to expect next. We never dreamed that it would be completely gone. Out of all the reading and research we’d encountered years before, we didn’t think it could just disappear. It’s like someone, in the books and websites and personal experiences we encountered… forgot to tell us that.
He then added “You no longer have this diagnosis.”
We said our thank you’s and goodbyes.
He left the room, and I burst into tears.
So there we were, after his appointment, in the middle of the Mexican restaurant laughing together. On the other side of a very long journey. On a very special day. Our own little party of three, I gave his hair a playful ruffle, while we discussed Harry Potter over laughter and queso. We sat there, the sunlight streaming in, with a small celebration of our own.
We spend so much of our lives, agonizing over the past, and obsessing over the future. It’s a rarity to live fully in the present. I can honestly say I struggled with this one when it came to him, for a very long time.
I’m not so foolish as to think we’re guaranteed anything. Life is hard with grey moments and struggles and sickness and death. Our hearts ache for the parents that are in the middle of real things. Life can change in an instant, for good or for bad. Life also rushes by in a blink, and it can be hard to soak it all in and embrace what we have, now.
So why did I share this story? I’m a different person than the one that I was twelve years ago as a new mom. It’s easy to take the good things in life for granted, and I am not so naive to know that it could have very easily been different news we received on his appointment that day.
And sometimes, it’s important to share the good news. Because the good stuff in life is there, too.
On the other side of a long journey that really came in a blink, we’re embracing the present while we have it.
With gratefulness, because it’s a gift.
A little older, a little wiser.
ART Murphy says
AWESOME!!!!!!!!
ashley @ the handmade home says
Thank you!
MomofTwoPreciousGirls says
I held my breath reading this whole thing! Thank GOD he is a perfectly healthy almost teenager!!! I bet those were tears you were holding back for years. Congratulations on such great news!
ashley @ the handmade home says
YEs – very much so. Thank you so much! ;}
Amanda says
What a beautiful story, Ashley! I’m so glad you got such wonderful news. My husband has Chiari and didn’t know it until he was in his 20’s – thankfully for us it just causes some severe headaches and he has to take medication regularly – it’s not severe enough to need surgery. But, I know how scary it can be! Thanks for sharing!
ashley @ the handmade home says
How crazy is that? So glad he’s okay. Did he present symptoms and then they found it? We actually had two friends who ended up having to have the full surgery – they’re both okay. The doctor told us it’s more common than we know.
Edie says
I am so happy to hear this good news! God is truly working for good in your lives. What a blessing to have three beautiful healthy children.
Mary Carson says
I donât read your every post, but when I do I am mesmerized by your storytelling abilities. Thank you for sharing your life.
ROSE LEFEBVRE says
Thank you for sharing. Each of us is always growing, especially where it concerns family–children and loved ones. Your journey has affected everyone and also given an appreciation for life! God bless you all.
Sue says
So happy for Aiden (mommy and daddy,too). Beautifully written and so heartfelt. Thank you for sharing.
Alison says
Yes, we need to hear the good stories that make us cry and thankful for what we have. So glad you shared his story with us.
Mary Singlleton says
Wow ! Just wow! Thank you for sharing this Ashley. I’m so grateful that your precious boy is healthy. Your words brought me a deep sense of thankfulness in the unseen blessings of my own life. Miss you guys.
Amanda says
I read this as I received a text from a friend who, while moving furniture, found an unopened thank you note Iâd written 6 1/2 years ago from a particular crazy time that flipped my world upside down. Iâm even more thankful tonight that friendship has only become stronger over the years!
Glad to know your boy is healthy!
Sarah @ Ugly Duckling House says
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Great post! So glad you got the best news. đ
Lynn says
I just cried happy tears đ. What a wonderful miracle Aiden will have to share all his life! Hope you guys make it to Auburn some time next season. Weâd love to see you and those precious kiddos!
Jessica @ Four Generations One Roof says
So happy everything is ok and a beautiful story indeed of how time can change everything đ
Kitty says
Thank you for sharing this slice of “real” life. I’m so very happy for your outcome. What a scary thing to be hanging over you for 12 years.
Lisa says
Amen, Ashley. Y’all have a beautiful God-story to share! đ
Lisa says
This was a beautiful beautiful story! So happy for your family đ Thank you for sharing!
Nicole says
I am so glad you wrote this! As a mother of a son with a congenital heart disease, I can totally relate to everything you just said.
We had a wonderful surgeon when he had his procedure and an amazing cardiologist for our yearly â check in â appointments. We had a similar teenage appointment just this past August and enjoyed a moment of just my son and I for lunch after, definitely makes you appreciate the little things
Iâm so happy to hear both our boys have a great outcome!
Southern Gal says
Great news!
Lisa says
This brought tears to my eyes. We are in a very similar boat with my two and a half year old. Check ups are now one year apart. Thank you for sharing this.
Sue says
Ashley. My dear friendâs granddaughter has just been diagnosed with this today (donât know what stage). I told her to read this post. She is 14 and been having headaches. So praying for a good outcome as Aiden has had. Hope this is her normal and doesnât need surgery. Thank you for sharing.
ashley @ the handmade home says
Hey Sue – Thinking of your friends. I can only imagine what they’re going through, and hope her outcome is the very best possible. Big hugs from all of us.
Bonnie says
I have tears running down my face as I just finished reading this! Thankfully, my coworker can’t see me – HA! I’m so happy for the great outcome. God is so good.
ashley @ the handmade home says
Thank you, Bonnie. I thought it was a story that we needed to share. We’re very grateful.
Adam @misterback.com says
Hi, Ashley!
I have finally decided to write to you after reading this article! I am currently studying the PhD Physical Therapy program as well as write on my own blog (although just started hehe).
I also have a bachelors degree in Kinesiology and I am a Certified Strength and Conditioning Specialist. Your writing is really inspiring! Just checked in to tell you. Finally stepped out of the shadows of just being an anonymous reader!
ruby says
i love happy endings!! so very thankful for this one…