George and I prepared ourselves as best as possible as we headed back to the PICU to see Taryn for the first time. Only 2 people were allowed in a room at once. We walked hand in hand down the curvy hallway, so anxious about what waited ahead. Taryn’s room was in the very back. As we passed the other rooms, I nervously peeked inside. My eyes scanned the surroundings, darting from room to room. I tried not to look. It felt like I was invading others privacy. But, it was impossible not to wonder about the other patients, the other families, and the other trials flowing throughout this ward. Continue reading
The morning alarm came all too quickly. My adrenaline spiked the moment it went off. We took turns taking a quick shower and dressing in our comfortable clothes as we prepared to settle in for the long day ahead. Taryn was happy and as sweet as ever. Meanwhile, the pit in my stomach nearly swallowed me whole. I tried not to think about what was about to happen to her, now only hours away. I took pictures with her in the hotel room. A nice round of selfies, because, well… I wanted to remember what she looked like right before surgery. And because I was so scared at what might happen next that I wanted pictures to remember her by. You may sit back and think “that’s dramatic,” but it was my truth in that moment. Continue reading
The way I consumed information started to change. I joined a few Facebook groups for craniosynostosis searching for comfort from others who had gone through the same experience as us, and yearning for the reassurance of positive outcomes. While I didn’t actively participate in these groups at first, I did constantly read stories, feedback, suggestions as much as I could. Real stories, real outcomes, real successes. It was here that I learned of an amazing organization, Cranio Care Bears [please check them out at CranioCareBears.org] and donate if you can!
There’s been an unusual lapse between my last string of posts and this post. At first, I didn’t think much of it. But as more and more time started passing, and I felt the urge to write to get this one out of my system and move on, I found myself in a strange state of paralysis. And then, it hit me. This next post would be the diagnosis. The day when everything became a reality. No more what if’s (in regard to what the diagnosis would be). No more, maybe it’s not true’s. This was the date when our fears were confirmed.
This a post (or rather a start to a series of posts), that I don’t know exactly how to begin. There is no clever, or cute way to revisit this journey — the journey we went through last year. My blog has traditionally been very personal, but never this personal. Yet, I feel an intense need to share our story. I want to share it for my daughter, so I’ll remember the important details that fade over time. I want to share it to help others who may be facing the same challenges — the same journey. I need to share, to share to as a way of healing.
Last year our daughter, at about 8 months old was diagnosed with Lambdoid Craniosynostosis. I’m going to share our journey — right from the very start.
I have had a Pin-spiration Revelation.
There are many ideas from Pinterest I have vowed to get crafty over, save money on, or promised to plant. Most of them remain lofty goals on my virtual pin boards. The ones I take the most action on, usually also provide a dent in my wallet, as opposed thifty solutions. However, today I saw a fun post that inspired me to take action, and not with money. One mother asked her children simple everyday questions and recorded their answers. A different type of time capsule, and very in line with the purpose of this blog.
Tonight, I sat down with my boys (Quentin 6, and Kaden 3) and recorded their responses to 21 simple questions. Here’s a deeper look into my world, through they eyes of my sweet boys.
1. What is something Mommy always says to you?
Quentin: “I’m nice.”
Kaden: “Uh…. Poop, but I say that on accident. Love me.” [For the record, I don’t believe I ever say poop…but….]
2. What makes Mommy happy?
Quentin: Giving her a hug and a kiss.
Kaden: Nose kisses, kisses, and hugs.
3. What makes Mommy sad?
Quentin: When someone gets hurt.
Kaden: When someone is mean.
4. How does Mommy make you laugh?
Quentin: By playing jokes on me.
Kaden: When you give me candy you make me laugh.
5. What was Mommy like as a child?
Quentin: Uh… I don’t know. Where you playful?
Kaden: Be happy.
6. How old is Mommy?
Kaden: 5, wait 100!
7. How tall is Mommy?
Quentin: 30 inches, are you lower than that?
Kaden: 14! Yeah, got it.
8. What is Mommy’s favorite thing to do?
Quentin: Having a family day.
Kaden: Scratch your back.
9. What does Mommy do when you’re not around?
Quentin: Goes to work.
Kaden: Go to work.
10. If Mommy becomes famous, what will it be for?
Quentin: A great singer. [See George! I’m awesome.]
Kaden: Piggy back rides on your neck.
11. What is Mommy really good at?
Quentin: Cheering me on when I’m riding my dirt bike.
Kaden: Playing Spiderman.
12. What is Mommy not very good at?
Quentin: Riding a dirt bike. Or magic.
Kaden: Playing Tea Party.
13. What does Mommy do for her job?
Quentin: Helps people know how to work a computer.
Kaden: Going shopping. [hah! I wish!]
14. What is Mommy’s favorite food?
Quentin: Pancakes. [Funny, since I am eating Paleo]
15. What makes you proud of Mommy?
Quentin: When she does something nice.
Kaden: I don’t know.
16. If Mommy were a cartoon character, who would she be?
Quentin: A BeyBlade one.
17. What do you and Mommy do together?
Quentin: Cuddling on the couch.
Kaden: Go bye-bye with you.
18. How are you and Mommy the same?
Quentin: We both have green eyes.
Kaden: Uh… penguin heads. [hmmmmm…]
19. How are you and Mommy different?
Quentin: You’re bigger than me. Your 30.
Kaden: We match.
20. How do you know Mommy loves you?
Quentin: Cause she gives us kisses before bed.
Kaden: 100! [he throws his arms out wide and smiles]
21. Where is Mommy’s favorite place to go?
Quentin: To Target!
Kaden: To the zoo
I must say, I learned more about myself than I expected! If you have kids, and can keep their attention for 21 questions, I recommend you give this a try. I can only imagine how the answers will change over time.
For the longest time Kaden has referred to his big brother as Bobbies. When he first started to call Quentin Bobbies, because he couldn’t say brother, my husband and I would try to help him say the word properly. My sweet, stubborn son would have none of it. “Bobbies!” he would shout back. So…. needless to say, Bobbies is a nickname that has had some serious staying power. Quentin doesn’t usually let anyone call him Bobbies except for his baby brother. Kaden is now 3, and fully capable of pronouncing his brothers name, but Bobbies still sticks. I love it.
As I was cooking dinner this evening, I heard Quentin and Kaden up to something mischievous. Parents, you know what I’m talking about. Sometimes you just know. For Christmas both boys received new dirt bike gear. “Mom!” Kaden yelled from the bedroom. “I want like Bobbies. LIKE Bobbies!”
The boys had drug out all of gear and were suiting up, race ready. When I say race ready, I mean pants, jersey, gloves, goggles…. and Kaden was in need of assistance with his helmet to be “like Bobbies.” Such brotherly love. It’s clear Kaden admires his older brother, and together the two are such an unstoppable team. Of course I helped Kaden gear up the rest of the way “like Bobbies.” The boys sneak back to their room and imagine, with fierce and admirable intensity, they are racing the most important race of their lives.
Just another random Thursday night at our house, where we are geared up and geeked up for dirt bikes, while imaginations run wild. I hope my babies never lose the ability to dream in color.
Recently, I started going to hot yoga again.
I love the warmth, and cleanse, the hard work, and of course the sweat… And sweat you do in a room of 105 degrees. The class I have been attending takes place in the evenings, so usually my sweet boys (all three, including my husband) are asleep when I get home. One night, not so long ago, the house was an unfamiliar silent as I walked in the door after class. I checked on my sweet family and they were all fast asleep, cuddled together in my bed. I kissed each one and headed in to take a quick shower, still nearly drenched from class. As I showered I cleared my head and tried to silence my usual busy mind.
Refreshed, I dried off and ever so quietly turned the bathroom door gently and slowly so as not to wake my sleeping loves. I squinted my eyes, trying to focus in the dark room and pulled the door back towards me when….
Kaden, whom was sleeping angelically prior to my shower, was standing directly at my feet. He spastically jetted his arms up at me, fingers wide, the smile on his face even wider.
He scared me to death. It was one of those scared kind of moments where afterwards, when you calm and realize there was nothing to be afraid of, you get instantly mad. Needless to say he was very proud of himself, and my relaxed state of mind was no where to be found.
Now, of course, I think it’s hilarious. Just a reminder, expect the unexpected with your babies. You never know what mischievous plots they are strategizing in the dark….
Recently Kaden has started to respond to nearly all of my motherly requests with the following matter of fact statement:
Naturally, he means, I am. He says it fast and with authority. He usually fires at me, “I yam, Mom, I yam.” Mind you, he usually is not doing what I have asked of him. The other evening we were cuddling on the couch, way past a suitable bed time for a 3 year old. “Kaden, you need to close your eyes,” I whisper at him, as I loving stroke his forehead of blonde hair. Without missing a beat he retorted, “I yam, Mom,” his eyes never leaving the television screen. I smile to myself, chuckling inside at the inflection in his voice. A couple more minutes pass. “Kade, you need to close your eyes,” I push, more firm this time. “I yam mom.” I quickly inform him, “your eyes are wide open.” He thinks for minute, looks up at me with his big blue eyes and says, “you’re not closing your eyes.” True. Very true.
“Kaden, that’s because I am the Mom,” I say, thinking I’ve outwitted him with a simple answer. “I yam a Mom too,” he responds, so matter of fact like that I am taken aback. He continues to stare at the TV. I can’t help but admire his quick thinking. If being a mom means you don’t have to follow the rules, it was worth a shot to try to pretend to be one. “Nooo…my son, I am THE Mom,” I coo back. Thankfully, he’s satisfied with that answer.
After one more time coaxing him, he relinquishes to my requests, snuggles into me, closes his eyes, and falls to sleep. Special exchanges like this remind me how lucky I am to get to experience this special bond with my children.
I yam lucky.
Such a cliché question.You’d think after asking this question year after year, by many a different person, we would figure it out. And yet, it still remains a mystery. At least to me it does. Quentin is getting ready to start Kindergarten in the fall. How did he get this big? When did it happen? I feel like I am stuck in some strange time continuum. As I recognize Quentin is more than ready for his new adventure, I also recognize I am more worried that I am the one not ready. As the control freak I know I am, it also tears at my heart-strings knowing whether I want Kindergarten to come or not, it’s not up to me to control. It’s coming for me regardless.
Just a bit ago Kaden, my baby, turned 3. I sometimes wonder if he really is the only 3-year-old (a big 3-year-old mind you) who gets carted around often by his mothers choice because he is my “baby.” He’s a pretty big baby. He wears big boy “underwears,” is potty trained, can drop in by himself and ride the entire track at a BMX park on a strider, and yet, I feel the need to cart him around occasionally just because.
These emotions feel so intensely personal, even though I know many other parents have walked in my shoes before. Cherish each second. Each hug. Each kiss. Each scrape and bruise. Breathe it. Roll in it. Dance in it. Sit silently with it.
Babies grow up.
Though this post is less about remembering a particular moment, it certainly speaks to my current emotions. A little self reminder to bask in every single moment.
Let’s live in the present, because it escapes us quicker than we even realize.