Welcome to my room…

Welcome to the second prompt in the Mom Before Mom   series. I am so excited to introduce myself to you before you would have ever known me… and to reconnect with my younger self. Let’s begin… or continue.

What did your childhood bedroom look like? Give a tour. How did it change as you matured?

My parents bought the house in which I grew up in October of 1984. I came in November. I always had the same bedroom, the last room on the right, though now a newly renovated home has made way for a slightly different layout, it is still the one room where I feel I find the most solace. Whoever said you can’t go home was wrong.

Growing up I had my own bedroom, complete with a platform bed my father built me . As I matured into an opinionated 7 year old, my room became a giant poster of me. I hung posters, filled shelves with art projects and crafts (I have always loved crafts), and taped pictures of JTT and Johnny Depp to my walls. These were the Winona/Depp days, where I filled my spare time outside of the gym (I was a competitive gymnast for 10 years) drooling over Home Improvement and Edward Scissorhands.

Flyers’ hockey + JTT + sand art + crafts + tween beauty products + tchotchkes + Bar Mitzvah junk = oh my! And yes, that Whoopi poster IS from Sister Act

After a family tragedy, I was offered a “new” room. A fresh start in the form of new furniture and a bigger bed. My dad re-stained my mother’s childhood bed frame and bureau in whitewash. I have always loved the look of rustic beach homes; the ones that look like the furniture is 100 years old, but it’s actually brand new from Pottery Barn. I had my mom’s things from her girl-hood, though, her beautiful solid-wood furniture became my own. My walls were painted a pretty periwinkle and the lampshade, valance, curtains and bedspread were Laura Ashley. It was the most girlie I’d ever been, or will ever be in my whole life. But when my Dad passed away in 1998, the trend of over-cluttered shelves and walls adorned with pictures from my life, torn from skater magazines or stolen from my sister (she had some really cute friends) continued into my high school years, waning only after my 17th birthday into a room with intricate stories and special moments separated by picture frames and scrapbooks.

This clutter mimics the clutter, confusion and turmoil in my teenage years. How I managed to stay an excellent student? I blame my awesome mom.

I feel like this time, when I learned to separate things, was also the time therapy began to work for me. I guess this is a deeper look into my life, than just my bedroom, but my bedroom was such a reflection of my mind. I had pictures in my bedroom from all walks of my life. My happy young years, before I turned 6 and my brother passed. Then the years after, when my Dad’s beard began to gray and my mom was worn. The months after my brothers were adopted. The joy (and sleepless nights) in the eyes of my parents and sister. The years that passed slowly, painfully after my Dad was gone. The years I turned on my own mom. The pictures in my room were not just taped on, they were mod podged to the walls. Clinging for meaning, a time-stamp of who I was and where I’d been. Loss, pain, overtly-sexual images of Abercrombie models I’d dreamt of kissing, next to pictures of friends who abandoned me after my depression set in. After I cut all my hair off and dyed it purple, gained 20 pounds and lost 35. Boyfriends came and went physically, but in my room they were glued to the wall, forever 15 or 16 or 17. Telling me they loved me in trade for heartbreak.

Somehow, my mom helped me tear all of those things down. From the walls, to the ceiling. We re-carpeted, repaired punched holes and torn out sections of wall from my glue. We repainted my room. It was like making over my soul. In the interim, I had broken the bed frame that was once my mother’s. My bed became just a metal-frame beneath a full mattress and box-sping, covered by flannel sheets and a cosmic red and blue flannel bedspread. I had sheer white curtains with the cosmic pattern in silver on them. I’m not sure why I picked that, except I  subconsciously love space (I didn’t realize this until a few months ago when even Dave was out-nerded by my desire to watch more space shows). Either way, when I came home from college, my space was different as I was an ever changing college student, but it was always my room.

D. Brady (now Love) hanging out with me (c. 2003) in my less adorned, but more adored bedroom

Since the renovation, the room is more sterile. Nothing in it really belongs to me except my American Girl, Molly, and Bear-Bear, my May Stick from my 8th grade year at Springside- all of which are shoved into one of the closets (now the room has two closets!). There are some books on the shelves that will become Addie’s, but the bed spread isn’t mine, the mattress is too comfortable to be something I could afford and the pillows are king. The bed frame is a magnificent piece of furniture that was custom-made and amazing. My mother’s bureau is still in the room, with the same drawer liners I put in as a child and the same piece of custom glass my Dad had cut to fit the top, and that makes the room safe. However, it’s the music box that makes that room my room. There is an antique key wind music box that plays multiple songs, my favorite of which is Auld Lang Syne. It’s worth thousands to a collector, but it’s the one thing in my house that I always wanted (and the grand piano!). That music box, the size of a small hope chest, is my childhood.The first time I entered my bedroom from my youth, after the remodel was done and the house as my mother wanted it, I found this giant box atop an antique cabinet in the space where my bed used to be. My husband, a musician, could not believe his eyes when I lifted the lid and wound the box. He fell in love with it in that moment, as much as I had as a child.

My childhood remains as it always will, in shambles. There are times I wish never happened and people I wish were still here. Friends I never wanted to make and those who are still drifters in my life. But, the one thing that remains true to me (as much as it can in a home that’s not mine), is my bedroom. It’s not a guestroom, or somewhere others are welcome to sleep or watch television. My mom did not make it a craft room, or somewhere to store old sweaters. The dogs do not snuggle into the bed, and the closets always have empty hangers waiting for my family to hang their clothes. My room is not what it used to be, and neither am I. As an adult, the bedroom my husband and I share is not what I want it to be. The furniture is Ikea and the floor unfinished. My closet is small, and I’d love a few more feet, but that is my work in progress, and I’m sure it will change as I mature; Just as all the rooms in my heart- though they stay the same, they change too.

Our little nest, just as we like it… for now 🙂

Giving thanks

In years past, my husband and I have spent our holidays with his family in one way or another, but this year we went to my childhood home to celebrate- not just Thanksgiving, but my nephew’s first birthday (more on that in another post!).

It was a beautiful weekend, even following an 8 hour drive (3 of which consisted of New Jersey Turnpike traffic). I have not seen my nephew in a long time, and his size, strength and teeth were amazing to me! He is such a BOY! His energy, love for my sister (and brother-in-law), curiosity of all things with hinges (see: pinched fingers) and how fast this year has flown all made me thankful for one encompassing person: my Mom.

Ever since I can remember she has welcomed home boyfriends, friends, strangers and their friends to gather at our home and celebrate the holidays. She sets the table for Passover, Easter, Christmas, Thanksgiving and everyone’s birthday. She hosts showers, Democratic meetings and Skype family visits. This season is no different.

As we all celebrated Mark and Addie’s first Thanksgivings, I held on to the flashes of my own youth. Running around in footie pajamas. Falling in and out of sleep while listening to the only person still cleaning this kitchen- Mom, of course. Watching the first round of Christmas movies play on TV and a new tradition (I hope lasts!): Upper Moreland WON the Thanksgiving game!  Addie loved the game so much, she fell asleep.

Football is SO exciting!

There was the attempt at real turkey, as well as the sweet potatoes and cranberry jelly (oh, the sugar!).

First Thanksgiving!

She wore her new dress, and fell fast asleep in her thankful pj’s. I only wish Dave and I had some that said “Thankful for Addie”.

The dress of the season!

I’m thankful for this baby!

For the first time in a couple of years, I brought myself to visit my Dad. As I talked to him, I held Addie close to me. I told him she was little. I told him how much of a sucker he would be for her. I knew he was hugging us right there. I felt him holding her up for me. When I started to sob, Dave held Addie and told her about my Dad and about me. My Mom held me. Crouched down in the cold I waited for my tears to stop. Being a parent is hard.

I put Addie down in the grass, and she was pensive, like she knew she was on sacred ground. Then, she smiled. She had just met two great men: her Granddad and her Uncle Jonathan, both gone before she could meet them in this life. We got into the car, I took a deep breath, checked the rear view mirror for my beautiful girl, and we continued our day.

The hardest part of the holiday was going home.
We got back in at 1am. As I placed my foot on the bottom step of my own home, I expected it to creak, like the one at my parents’. When it didn’t, my heart fell a little.

I hope that someday Addie has memories like mine. Something that reminds her to come home. That home is always home, no matter where you pay your mortgage.

Delaware

And so… finally. How was Delaware?

It was amazing.
It began with me missing the exit, and ended with me in tears at Saladworks.
In the middle, I suppose, is what you want to read about.

We got up early on Thursday morning and prepared ourselves before dressing Addie in her finest romper (read: simple to get her in and out of). I must have been incredibly nervous, because I didn’t take one picture. Not a single one.

Once we were in my mom’s minivan, I set the GPS and headed to the closest Dunks. We loaded up on coffee and jumped on the PA Turnpike. My hands were sweaty, despite the chill in the air, and the drive went well. It turns out that Wilmington is only 70, or so, minutes from my parents’ house. Even missing an exit, we still got to the appointment early. We arrived and were directed to the clinic, where we were welcomed with smiles and open arms. But, enough of that- onto the meat:

We learned a lot of things in our 80+ minute meeting with Dr. Bober and his assistant, Angie Duker. These were the thoughts I’d had just the day after our trip about our experience so far:

We arrived at the train station just 15 minutes before we had to board. It was perfect timing. As we ran in through the thick drops of drizzle, Dave grabbed some milk for the coffee we had made, and we waited for the All Aboard to flip up on the Amtrak screen. We loaded ourselves onto the train; baby, suitcase, duffel bag, diaper bag, toy bag, lunch bag, milk cooler bag and car seat. Once settled in our seats, Addie took her bottle of milk. We pulled into Penn Station in New York a few hours later and I moved into a window seat. As we pulled out, Addie looked out the window, then back at me. Belly-to-belly, she plopped her head down on my chest and fell asleep for her nap. Right on time.

She awoke, her noggin popping up with a smile plastered across her face. Then a frown. Time to eat! Addie chowed down her milk and then happily cooed and spit for a while.

She was wonderful the whole ride; following her nap and eating schedules as usual- and making do with having to sleep wherever- including on my legs.

Then it was Thursday, October 11. The day began like the rest had in the previous week. I was up at 4:30am, unable to sleep through the night since receiving my copy of the sleep study. Mild disordered sleep.  What did that mean?

As Dr. Bober reviewed all the papers I had so carefully sorted (Medical Records, Birth Records, Early Intervention, Genetic Testing, Skeletal Survey and Results, Growth Charts), I was still nervous. Finally, he asked Dave and me what we knew about achondroplasia. I froze. What didn’t I know. I said a few things and he stopped me. We reviewed my biggest fears, from central sleep apnea to decompression surgery and hydrocephalus. We talked about milestones (I have some new charts… I will make a page for them!) and we discussed sleep. While Dr. Bober was not concerned, he did tell me to just keep an eye on Addie and if I notice any changes in her sleep to contact him. However, as of October 15th, when we went to the sleep specialist in Boston, we are scheduled for a second sleep study in March. The sleep specialist would like to see her central sleep apnea occurrences a little lower than they are. Who knew one person could need so many doctors, yet be deemed healthy?

Beyond that, we reviewed Addie’s soft spot and it’s measurements. We were told what to look out for and that a little bit of extra fluid is common, but nothing to worry about. We were told to feel her soft spot once a week. I check every night.

Dr. Bober also talked about spinal stenosis, and the difference between it being a feature of dwarfism and critical. I felt relieved to know that Addie doesn’t present with any signs of critical stenosis, but knowing that the first 24 months of life are where hydrocephalus, bowing and stenosis will most likely show up in childhood, I feel like I’m having a private countdown while I should be enjoying each day, I am bombarded with looking and checking and feeling and testing.

I know. I need to relax.

Then, we moved onto examining Addie: 23 3/4 inches, 14 pounds 2 1/2 ounces and a head circumference of 17.8 inches!
She can’t straighten her arms all the way, which is just another feature of dwarfism that many people have, and, after reading the doctor’s notes (sent to me in less than 3 weeks!), she shows some signs of bowing (bilateral genu recurvatum). Yes, I looked that up- as well as over 10 other “musculoskeletal” notes about appearance. We will be seeing Dr. MacKenzie in April, as well, and he will probably have more to say about that then.

There really wasn’t bad news, per se-,but there were some things to look out for and preventative measures that need to be taken. For instance, a common issue with achondroplasia is kyphosis. Addie presents with lower lumbar kyphosis (when you hold her, you can feel her spine stick out in her lower back):

The fear with this is that in the lumbar region of your spine, your bones sit parallel. If your spine curves the opposite way, the bones will grind into each other, causing the bones in the spine to break and look “bullet-shaped”, instead.

This is not Addie’s spinal x-ray, just an example.

When we hold Addie, we need to provide full back support. That includes when she is up against our chest, applying slight pressure to the base of her spine to help straighten it out, and when she is in our lap, letting her lean against us. Anything she sits in needs to be a hardback, allowing her to conform to what she sits in and not the other way around.

Pressure on the low back.
Leaning back to create spinal support.

Sadly, this limits our carrier time to never. I had always imagined myself a baby wearing mama, but having a healthy baby means more- and so, my arms are always full and so is my heart!

Addie’s first pic in the Bjorn… before we knew!

What IS good for her, however, is tummy time, as it brings her back into an arch… which is great! She is a happy camper on her belly, for the most part, and (as of October 27th) if she doesn’t want to be on her back, she rolls to her belly = A total baby-body workout!

Addie playing some music on her belly!

Some more interesting facts:

* Due to the shape of the ribcage, the liver is [usually] able to be felt. This is not true on an average height child, which is something to alert doctors of should they have a concern. Sometimes, it is falsely interpreted as a swelling.
* Addie’s arms do not fulling extend by about 20% at the elbow. This is totally normal, and should not inhibit her in any way. She does have lower muscle tone, primarily in her arms, but that is just another feature of dwarfism. As well, her limb disproportions were noted in her arms as rhizomelic, and her lower extremities are rhizomelic light. This refers to her arms as short (the long bones) and her legs as mildly (for a dwarf) short. She will, most likely, be around 4 feet tall.
* The diagnosis of achondroplasia could have been made with ONE x-ray of her pelvic bone! The blood test, however, confirms it.
* Dr. Bober feels Addie is doing great! (This is my favorite fact!)

And so, this is how Delaware went.

We met with a great family when our appointment was over, there were lots of smiles and handshakes and then we were leaving… and I was shaking. I was gripping Addie so close to me I could feel her little Buddha-belly flatten against me.

Dave and I decided that we had not eaten, and so we needed to get food in Delaware. (If you’ve ever seen me hungry, you know it’s a sight better left for horror films and psychiatry studies.) We made a left out of the hospital and came across a Saladworks- one of my favorite places to eat. We walked in and parked ourselves at a table after glancing at the menu. I knew what I wanted, and as I told Dave I looked over at Addie. Perfect. Small. Addie. And I grabbed Dave, locked myself in his grasp and cried into his shoulder. I cried for the relief that Addie is OK. I cried for the fact that she will have struggles. I cried because I have not slept through the night since she was born.

We learned a lot, and we will continue to learn. Thank you for taking this journey with me as a woman, as a mom, as a parent, as a friend.