While we enjoyed all the workshops that the LPA National Conference had for us, we also loved participating in other events- like the Fashion Show! Check out Addie in her first appearance in the LPA Fashion show at #lpaSD2014!
Tag Archives: LP
It’s ok that the day itself may not be marvelous, because the life that follows will be.
And that’s the damn truth.
I’ve struggled with what is OK to share, and what isn’t, and while Addie is at such a young age, I think it’s helpful for parents to know about what may happen with their small children, especially their children with dwarfism going through scarier surgeries, like decompression. For us, we may have a special case (Addie doesn’t seem to bounce back from anesthesia very well), but here’s the story.
Many parents have recalled surgeries from years past and reminded me that our kids bounce back. I totally agree that they do- Addie is such a fighter, sometimes I think she must not be mine. But just because she fights doesn’t mean that sometimes her body doesn’t betray her, or that the bounce that some people recall as “a few days” really was closer to a few weeks… but who can remember years ago in such detail?
So… while it is fresh in my memory, while I’m living it, let me tell you what last week brought us, and why not being 100% doesn’t make this a bad week.
(Disclosure: Addie has decompression of the foramen magnum and a C1 laminectomy. There is a photo at the very end of the post you can enlarge to see the incision.)
Tuesday, August 12, 2014
When we got to the hospital, she was asking for banana. Thrilled that Daddy was going on an adventure during the week, I could tell she knew where we were when we left the car with Hasbro’s valet. We walked in the door, I led the way to the admission room- this isn’t my first time at the rodeo. After check-in, we went up to the 2nd floor to meet with our team, do vitals, review health records… the usual. When I saw Dr. Deer, I was thrilled. I’d requested him to lead the anesthesia team and I could feel myself breathe a sigh of relief when I saw his face. “I knew the name looked familiar…” he smiled… as he’d just put Addie under for her MRI in June. Thankfully, the second I asked, Addie’s neurosurgeon put in my request. Things were starting off well.
After the big stuff was done, we went on to the way cool things, like a syringe of Versed (aka Midazolam, used before surgery or medical tests to make you feel sleepy and relaxed – This medicine is a benzodiazepine) and the playroom. As she played, I reminded Dave to pick her up after a bit because she would get loopy. He grinned and scooped her up. She looked up at him and explained in a slow voice with a beaming smile, something about Sesame Street and Cookie Monster then laughed. He looked at me… “told ya,” I laughed. He was wearing the OR gear that was reserved for me… only I am pregnant and can’t go back to the OR with the gas. I gave her kisses and more kisses and a hug that I could feel was being taken away from me. “OK, Mom. We’re ready. Dad, follow me.”
And they were off. I stood there, motionless, for what seemed like 10 minutes. Then I started to pace. I stood in the doorway when he finally came back towards me- making a right to strip off the gown, hairnet and mask, and then a left to come back to the waiting room. We gathered our bags and headed to the surgical waiting room. The patient progress monitor (sort of like a departures/arrivals screen at an airport, but with patient number and status) was not updating from the day before, and I was apprehensive the whole time because it was never fixed… but with Dave sitting near the phone, I was sure we would know something soon.
And then 3 hours passed into 4. It rang… “You’re speaking with him,” Dave spoke into the receiver. I popped up from the couch where I’d been in a sleepy stupor, started grabbing my things around me and my bag. “Ok, thank you,” and he hung up. “She’s done? Can I see her? What did they say?” In his usual calm demeanor, he told me, “about another hour.” I started the timer. An hour left.
I played with my ribbons relentlessly. Orange and purple she’d said. “Should mommy wear them in a bow?” I asked. “Yes, ok,” she replied. And those were what I was holding on to.
At about 7 after 1 (5 hours and 7 minutes after I’d seen her), Dr. Klinge walked in. I looked at her with this anticipation and excitement that felt like it was jumping off me. As she sat down, we talked about Addie’s compression and how it looked once she got in there. She showed ultrasounds that she took of the spinal cord, the flow, and discussed how there was some scarring around her dura (the outermost of the three layers of the meninges that surround the brain and spinal cord) and pinching. I heard nothing except, “no permanent damage. We took care of it all…” as she talked on. I was handed a bag of Addie’s baby curls with her name on them, and “Do you have any questions?” she asked.
“When can I see her?”
She smiled at me and we talked a bit more… and then she left. Addie would be going to her PICU room before we could see her (skipping the general recovery area), and after what seemed like an eternity, I saw him. Dr. Deer walked toward me and I stood so fast my chair fell over (to be fair, the HUGE bag of Addie’s medical history was on the back). I scrambled to grab everything as he told us she did great and we could come back to see her. As he scanned his badge to PICU, my heart was slamming. “She’s asking for something… a bunk…” the nurse trailed off. “Binky bunky!” I grabbed her pacifier, lifted her mask and placed it in her mouth. Immediately she calmed… but once she saw Dave, she begged to have him. He sat down and held onto her with all his might as she settled.
The first night was rough, but we made it through. As the nurse told me what her lines were for I cringed. Fluids, morphine, Valium. I felt like I was in a panic and was pretty stressed out. Dave got us dinner and even in her stupor, Addie was thrilled that my dinner included guacamole. After we got her settled, Dave went home for the night. Around 3am I woke up and paged our nurse. The pain in my right side was excruciating, my belly was tight… a contraction that wouldn’t let go. “Do you want a wheelchair?” Julie, our nurse, asked. She was so nice… looking at me with encouraging eyes- I think she wanted to wheel me to Women & Infants. “I just need to drink some water,” I assured her. For about 20 minutes I stretched, drank water and walked around. Finally, I was able to lay back down. Scared I was going to bring labor on, I did my best to sleep, but around 4am, Addie woke up. She was puffy and itchy and wanted to be held… so I did what any 34-week pregnant mom would do. I adjusted myself as best I could and held her to my chest. She immediately went back to sleep and I cried into her shoulder.
Wednesday, August 13, 2014
Her first PT and OT session went well, although she was shaking due to lack of food and a high dose of meds, but… I got my first smile! And that made my heart soar.
We left PICU around 1pm Wednesday, and Addie had some visitors, which made her quite sleepy!
She wept a lot throughout the day, and stayed on her morphine and fluids, barely eating anything. Dave came as soon as he got out of work, which was just what she needed. Addie had woken up in a stupor around 6:15pm and screamed for him for a better part of an hour as multiple people tried to console her, including her Auntie Ashley. But then Daddy was there… and all was well in the world, again. Daddy makes everything better, with our one mishap coming when the line in her foot loosened as it was being taken out and blood went everywhere. Thankfully, it was one of those “looks worse than it is” things (and no, I won’t show you the picture).
We snuggled in for the night, and Dave tucked us both in with her gently whimpering for him. The wrap around her head was bothering her, but I was glad it was there. I wasn’t ready to see the full incision, which was only half visible from underneath a piece of gauze. When Addie rolled over a while later, screaming in pain, I buzzed the nurse, who came in and put another dose of morphine on for her. She looked at me through drowsy eyes and asked for “mama’s pillow”… the pregnancy pillow I’d brought for myself now neatly nestled her small body in it’s curve, leaving me with the hospital pillows to ease my aching body. Her body was wrapped up in barely anything, but she was running warm and we monitored her fever, which stayed low, throughout the night.
Thursday, August 14, 2014
Thursday went well, with a PT trip to the activity room, a visit from Grandpa and Poppy (Dave’s dad and grandfather), and time spent with Namah (Dave’s mom). When the bandage was removed, she put her head in my hands to scratch- I went to town, gently rubbing her forehead and behind her ears. I could feel her body relaxing. When I first saw the incision I was taken aback. It was beautiful- her warrior badge shown upon her little head with such gusto and force. It almost took my breath away. From where I was sitting, it looked like 6 inches. There was something so unobtrusive about it… it was there, but her hair would cover much of it, and the stitches, being dissolvable, were not dark or menacing.
She did great all day… most of the day, but after nap time, she was irritable and upset. She’d slept through her medication time, and because we were trying to go all by-mouth, she was unhooked from the IV. My mistake for thinking her being asleep was substitute- when she woke up she was grabbing her neck and screaming through tears. I buzzed the nurse who rushed meds in for her. As I calmed her and gave her lunch, she felt warm. We continued to monitor her fever, which stayed low into the night.
Addie had taken all of her medication by mouth the whole day, and thus we were almost a shoe-in to go home the next day! As I settled her into bed and laid down next to her, we both drifted to sleep. I felt Dave kiss us both and whisper I love you before leaving. I wanted to cry when he left… even though I was mostly asleep, I missed him at night. About 2 hours later Addie woke up screaming. We got her some more meds and she looked at me with these big pained eyes. I felt awful. Her fever was almost gone and she just wanted to go home. “You want to get out of here?” I whispered. She grabbed my face and smiled before we both tried to go back to sleep.
Friday, August 15, 2014
After not sleeping much (she somehow takes over all beds), I hopped up and was dressed and ready for discharge before Dave even got to the hospital for his morning visit.
The pediatrician came in (I love that our pedi checks in with the hospitalized patients every day) and looked in Addie’s ears. With a diagnosis of no ear infection, we knew that muscle spasms were responsible for some of the waking and night screams. I agreed to leave the hospital with a script for a muscle relaxant… For my two year old. This idea went against every fiber of my being, but her being in pain wasn’t something I could handle. We were almost packed and ready to go when we got word that neuro was backed-up and wouldn’t be up to check Addie out for a while. With a sad goodbye, Dave made his way into work. As he left, I checked her head. She’s warm. “100.9°, mom. We’ll keep an eye on it.”
For hours, no one came. I tried to get fluids and food into her, we met with PT and played, and she rested. Slowly, with some meds, the fever lessened- and being under 101.5º, the neurologist agreed we could be discharged. If you know anything about the discharge process, it’s not quick. Paperwork to leave, scripts, instructions and signatures all need to happen before we get the approval, but when Dave came back at 6pm, we were ready. With bags, balloons and flowers in the wagon and Addie chomping at the bit to “please, I go outside now,” we made our way to the revolving door of Hasbro Children’s Hospital.
As she brushed her teeth for bed, I ran downstairs and grabbed my measuring tape. “I need to know,” I said to Dave. He knew what I meant. “Exactly 3 inches,” he said. And that was that. Our first night was OK, with bags of liquids, diazepam in pill form (yes, a pill…) and some sorbet for good measure, I left CVS. Addie took her meds with some disdain and headed to bed, waking only once and settling with a second dose of medication and some snuggles, until 7:30!
Saturday, August 16, 2014
With a morning reminiscent of most other mornings at home, Addie wanted to do something… so we headed out to the Hope Street Farmer’s Market in Providence (RI). She did great, and though I was upset about one person who sidestepped me and got in close to Dave’s shoulder checking out the back of Addie’s head, our mid-afternoon adventure was great- running into friends and enjoying some fresh air!
Addie came home and took a great nap, again waking in pain. Managing sleep times and pain management is a challenge I don’t think I will ever truly conquer. For the rest of the day she was OK, coming out of her grogginess and enjoying a trip to the grocery store for some dinner staples. But then sleep came in clips. After settling in, she woke up screaming and grabbing her head. I could see she was trying to get out of bed- not a good thing for a toddler on muscle relaxants, so Dave ran in while I went downstairs to get her meds. She settled in with him, but just an hour later was up and screaming again- at her door! I picked her up and brought her into bed, where she continued to scream through the night… unable to tell us what was wrong, Dave and I could do nothing but hold her and try to get her in a comfortable position.
Sometimes I feel helpless as a parent… this was one of those nights I felt like a total failure. Her cry left me in pain, and my inability to fix it left me in shame.
Sunday, August 17, 2014
I first saw her Sunday morning when Dave carried her into the bedroom with my coffee. My eyes half opened, I heard her squeak, “Good morning, Mommy!” My heart felt lighter… she was doing OK. Dave looked a little rough, but I knew he would be fine. Our day, as all the others since the surgery, was up and down. There was some crying and pain, but there were also moments of love and snuggles. Her love of being outside and exploring, hand holding and snuggles made their way into each corner of our day, and we’re on the mend. We’re getting there.
With just 5 weeks to go to 40 weeks, Dave and I are laughing at the lack of sleep… Hardcore prepping for baby two, people have jested. Loving our girls and giving them all of us, is more like it. Martinkadelux- always a team.
Here’s to a beautiful week, Reader. Mondays where we choose to see the marvelous, create it for ourselves and spread it to others.
BELOW IS A PICTURE OF HER INCISION BY THE DAY:
“How many times has this happened?” She asked me to repeat the number.
“Six. But only 4 times this year.” It was May. I knew our batting average was not good on this one.
“I’m going to refer you to a neurologist just to get her take. Other than that, she’s perfect- don’t you worry.
I’d heard that before. When Addie was a newborn, I was told not to worry. A lot of kids have big heads, but they just wanted to be sure. I’d pushed to know more and at 9 1/2 weeks she was diagnosed with achondroplasia. And here we were. I’d pushed it. I’d asked if these blackouts were normal. She’d hit her head. No breathing, loss of color, completely limp, eyes rolling. 10 seconds with a lifeless body that would spring back the with force of the Devil inside, screaming. Followed by a headache, but other than that, back to herself. Six. Times.
“So she hits her head, cries, then stops and passes out? Sounds like she’s holding her breath.”
“No,” I responded. “She hits her head and nothing. I pick her up, trying to stop her fall from the beginning and nothing. She is lifeless. Then she comes to. She doesn’t cry first. She’s not holding her breath.”
“I see.” I see, too. Her hands furiously typing into the tiny laptops that the hospital just implemented in their paperless plan. She’s slamming at the keys, catching each word.
“Does she ever get headaches?”
“Yes, but they’re weather related, my husband and I get them too. She has them a few times a month.”
“So you all get headaches at the same time?”
I paused. I felt hot and upset. “No, we don’t.” I’m wracking my brain. Dave and I get them on the same mornings, but not always Addie. Some days she just rolls around holding her head, and some nights she’s done this. “But it’s not all the time,” I’m sputtering. I want to take it back. How did I miss this?
We talked for a while longer. We did a neuro workup… a few times. Then, “I’d like to order an MRI to check it all out if that’s OK with you, mom.”
I left with papers and numbers and numbness. From the first hours I spent reading about achondroplasia, I feared decompression surgery. The recovery, pain, spinal cord, scarring. Everything about decompression scared me.
The MRI was done, and that was that. I was sure she was fine. My achon baby who walked at 16 months, spoke in full sentences, showed no significant apnea after age 1… she didn’t have classic signs of compression in her spine. She was fine.
She was fine.
I got a call the very next day from a doctor. The neurologist didn’t like the MRI, the neurosurgeon didn’t like the MRI. The story, the images. They were not great news. “Give her office a call. They will get you an appointment soon.” The appointment they gave me was nearly immediate.
We discussed surgery, but nothing was in stone. I wasn’t convinced. I wanted more opinions and I would get them in San Diego from our specialists- but after the images and story, the answer was still clear as mud. Sure she falls a lot- all kids do. The blackouts may not be from compression. Her images are not indicative of surgery. Our doctors could go 50/50 on the surgery. I felt lost, but with an order for more images. They would tell us something. They must.
So last Wednesday we headed to Boston. Hungry and hot, Addie was ready for whatever was in store so long as she got to eat at some point. By 3pm they finally took her back- she was so loopy from the meds that she could hardly whimper when I handed her to the anesthesiologist, but I was still torn apart. We met back up in recovery, where Addie was still asleep. There was a laundry list of medications, and my usual lion woke up rather calm (read: drugged) from the anesthesia with her usual intubation-throat, looking for snuggles. At last, we were in the car and headed home.
By midnight we were mostly asleep, but not ready for the next day.
We walked into the APC building at Rhode Island Hospital- full of angst and armed with her MRI from the day before. We talked again. I mentioned her falls seemed to be from slow feet. Her waking in the night. Her headaches that still happen, but not often. We talked about how she hangs her hands funny sometimes, but she seems strong. There haven’t been any blackouts since April- she hasn’t gone backwards since then. Then there was a neuro workup.
At first, I thought it was my mind playing tricks, but as the specialist hit her heel, I saw her foot jerk. The fluid motion I was looking for, the common reaction of a reflex was replaced with this ugly movement. Taking her foot in her hands, she pressed up, let go and checked with the hammer again. “Clonus.” I said. She looked at me with sad eyes, knowing eyes. She recognized defeat in my voice. I had nothing left to fight about. Clonus is a sign of neurological hindrance (a continuous rhythmic reflex tremor initiated by the spinal cord below an area of spinal cord injury, set in motion by reflex testing). Catching it and treating the compression would be key in keeping Addie healthy. She could eventually stop walking and suffer from severe spinal damage without it. Decompression was the way to go. I had my answer.
All I could think was fucking clonus.
The neurosurgeon came in. More people checked. Sure enough. What wasn’t there just a few weeks ago was emerging. You can’t make this stuff up. I was near speechless.
I’d wanted an answer. I said I did, at least. I wanted a yes or no, and I was looking for reasons. There it was. Coming in little jerky, hesitant motions. I signed the paperwork for her surgery (which is happening tomorrow) and we headed to the lab.
“Her veins roll away,” I said. “They look closer to the surface than they are. Seriously- they will try to escape. They’re hard to get on her.”
“We do this a lot,” she said back with a polite smile. No one likes to be told how to do their job, but to be fair, I warned her and I know my child.
They pulled the needle out 3 times, and moved it around in her small arm a dozen times. “I got it,” a phlebotomist beamed. The second one who’d tried. I was annoyed, I was crying. I’d told Addie that this day wouldn’t hurt. We were just going to talk to the doctor. But here she was screaming from her back, “No mama. I want uppahs. Please pick me uppahs. You said. You said. It hurts.” I tried to take it on, “I’m so sorry, bug. I’m so sorry I lied.”
“YOU LIED.” She screamed. It came in a spit. A slap in my face. She was covered in snot, and red-faced. The fear spilling from the corners of her eyes. I started to heave into her neck. She suddenly stopped crying and began to stroke my face. “Don’t be sad, mama. It’s ok. You ok, mama.” I stopped my tears. This was her moment. She began to whimper again into my chest. They taped the gauze on and she practically leapt into my arms.
We got home and she fell right to sleep. She napped. I made lunch and I started some laundry. I called Dave to tell him everything and I answered all of his questions. I joked on the phone with my mom about attempting to get a urine sample from a 2 year old. I sat down to work. And then it hit me. I started to panic. I lost my breath. The scar. It would be on her neck forever. I didn’t want her to have that scar.
It’s not the aesthetic I worry about. It’s her sweet neck. Where I nuzzle. Where I pull her hair up and the most graceful neck appears, balancing her head gently upon her shoulders. Long and lean. Untouched. Beautiful. There will be a scar in that place, to constantly remind me: I couldn’t fix this. I’m her mother, and I could do nothing but hand her over to a team of specialists.
As I came out of my panic, I decided I needed to put time aside. This week, as much as I want to write because I love to write, I will not. Of course I have work to do, but who I am means more. And who I am is a mother, a wife. I need to support my family this week and appreciate all of your love and concern as we regroup and work through this. As Addie goes through decompression surgery, we too must decompress.
I’ve spent weeks in denial- maybe months. I ignored a lot of things, never mentioning them except to friends because it was just Addie being Addie. Headaches I kept calling seasonal. Falling that looks like she was dizzy. Holding her hands in a funny way some times- almost floppy. Blacking out entirely when she hits the back of her head. Holding her neck. Screaming at night (which is pretty new). Gasping for air in the night, but not related to apnea (still sort of a mystery and hoping surgery helps). And now, clonus. I’ve denied it all too long, and I could not be more thankful to the multiple doctors who pried and asked more questions, forcing these things out of me. Showing me that decompression, though scary, is truly the direction we’ve been headed. Her strength, both physical and mental is sure to be tested, but our girl will be strong. My warrior.
Addie will be at Hasbro Children’s Hospital from Tuesday to possibly Friday (hoping for discharge before the weekend and maybe earlier), and I will be by her side the whole time. Her recovery means more to us than anything now, and while I can’t wait to be back (I love to write and share!), I have to take this time for family.
We went to Dan Diego for the LPA National this year, and though it’s only our second National Conference, like last year, I was blown away by the fantastic hotel that was chosen as the main site. The Manchester Grand Hyatt in San Diego offered many comforts in the rooms, wonderful on-site food, is within walking distance to all-things awesome, and has gorgeous views from both towers (where guest rooms are located)!
When we pulled up to the hotel, it was about 1am. Eight of us unloaded from a shuttle service we’d all taken for a nominal fee from the airport located just a few miles away. Immediately men were there to take our bags and help us to the front desk where I checked in and asked a bunch of questions pertaining to our reservation. Because we were staying there under the conference rate (unbeatable) and when I’d first booked the night of July 4th was full, I ended up needing to make 2 different reservations to get the dates we wanted. Though understandable, I was bummed to learn that we would have to switch rooms the next day, but not to worry about that- we could stay in the room as long as was necessary to get our other room ready- a HUGE relief when you’re talking toddler, luggage and pregnant mama.
We started out in the Harbor Tower, getting to our room, searching through our suitcases stuffed with rolled up clothes until we found our PJs and toothbrushes, then passed out in the comfy bed. I was happy that although it was the 4th of July and there was a lot of celebrating going on, I didn’t hear it through the walls. We were able to get a great night’s sleep, and thanks to the time change and a nap on the plane, we were up pretty early!
We wandered out to get breakfast at Café 222 (I’ll tell you all about that in another post) and then we headed back to the hotel… on our way stopping at an awesome playground and community garden to swing, walk, and talk about outdoor gardening all-year long! It was SO cool to just happen upon a superbly clean (not even a cigarette butt or graffiti in sight) city play area with such a beautiful garden and maintained path.
When we got back to the hotel from our breakfast and walk, we packed up anything that had been unpacked, checked out the view and then got a call that my parents had arrived! Addie was just ready for a nap, so Dave went to meet them and collect their luggage until their room was ready- awesomely, by the time he got down to the lobby, their room was already ready (3 hours before check-in time!) and he helped them get to their room and settle in before he headed out for some snacks.
When he returned, we moved into the room where we would stay for the remainder of our time with the help of a bellhop and a sleeping toddler perched on my shoulder. This time our room was in the other tower, the Seaport Tower, on the 29th floor. Because we had to switch rooms, they actually gave us a higher floor (better view) without asking! The rooms were almost identical, with the biggest difference being that the bathroom layout was a bit different making the door open as you would expect, where the first room it slid open (which was really cool!).
We had a room with 2 double beds, thinking Addie would be in her own bed, but because she’s two, she ended up in our bed most nights- which made me wish we’d gotten a king, but the beds were comfy and we made it work! The table by the window was great for sitting and looking out over the city and I loved that we had a comfy chair so that I could sit and read while Addie napped (everyone made use of that chair for the same reason!). We also could relax in the room with the single-serve coffee and teas they provided which were actually good! The desk in the room was perfect for getting the work done that I could without WiFi, which was only free in the lobby, and the large TV in the room got PBS- making everyone happy when the adults wanted an extra 10 minutes of prep time and the Miss wanted to go, go, go on an adventure (from the Cat in the Hat theme song!).
The biggest drawback of the room was the fridge that was not only really small, but didn’t get cold enough to hold anything that could spoil. At conferences, we like to bring or buy food while we are there to save money on eating out, but not having refrigeration made that hard. Being able to rent a microwave for the room, however, is pretty awesome! The sink in the bathroom also seemed really high- and I’m tall. While the look is clean and modern (which I love), it’s not easy to actually use (I stood on my toes to wash my face over the sink without spilling water everywhere).
Finally, the pool! While we didn’t make it to the pool designated for adults only, we did get to spend some time at the 4th floor pool, which was beautiful! We walked right out from the elevators, to the deck, which is easily accessible from either tower and grabbed as many towels as we needed (no need to steal them from your room!), parked ourselves on some chairs near the steps and enjoyed playing the friends, splashing and sipping water. There is deck-service, which is awesome, for anyone who wants to order something to eat or drink right from their chair! Addie and Dave spent a lot of time in the pool- with Addie playing on the steps and jumping in from the side with the other kids. Me? I lounged my big, pregnant belly in the sun for a dose of vitamin D and a nap! The chairs were so comfortable, I would have stayed there had Dave not reminded me we needed to get dinner before Addie’s bedtime!
We really loved the hotel and all the grandeur it offered while still being affordable (at the conference rate for us), but wish the lobby had been a bit more conducive to meeting people. Last year at the conference the hotel lobby was built in more of a compact and circular feel, with the lounge closer and lobby seating closer together, as well as the hotel restaurants close-by. This made it easier for people to connect and bump into each other. With the lobby being planned in more of a rectangle with the bar at one end and a café at the other, and minimal seating, it was hard to bump into people- although easy to find a place to meet up if you planned it.
The Manchester Grand Hyatt made staying in the city such a luxury- close to good food and meet up spots like the The Seaport Village and within walking distance to the Gaslamp Quarter and convention center- this is the place you want to stay, whether business or pleasure, on your next trip to San Diego!
I was unable to find anyone who recorded (or even took a picture!) of the LPA Speakers’ Night, but I wanted to share my piece with you. I plan on recording me speaking it, but wanted to share it with you (written) in the meantime. So, without further stalling, here is my LPA Speakers’ Night Piece entitled: Keep Pushing.
As I embark upon the birth of my second child, I find the title of my piece ironic.
While that’s not my birthing mantra- that one is just breathe- Keep pushing is my mission in life.
Letting ourselves be defined by anything, even things that are so apparent, like our gender, sexual preference, race or disability is no way to live. It’s no way I will let myself or my children live, so why do other people expect me to allow such behaviors from them?
The answer is simple. The answer points a finger. The answer stings. The answer is me.
People treat others as they are allowed to. Sad? Pathetic? Lame? You bet. But it’s the truth. We love to take advantage of life- be lazy where we can be. We often, as humans, forget the implications of our language.
We let people call us homo, fat, crazy, midget, whore. Because as a culture stopping these things is too “politically correct”. We fear that we are being “too sensitive”, we aren’t raising tough kids, or we ourselves do not have thick skin.
“Good luck this time!”
“Good for you- trying again.”
“Sucks you didn’t know before she was born.”
“Is there anything they can do for her when she’s older to make her taller?”
Fellow humans have said these things to me. Why does the world view dwarfism as something to be cured, rather than embraced as a difference?
We don’t want to question what others say. We give up our right to know about ourselves when we don’t ask the hard questions.
“I don’t know.”
“We will learn together.”
“Let’s come back to that.”
“This is my first one.”
Doctors have said these things to me. Why is the education about dwarfism so slim that many medical professionals fear the diagnosis of dwarfism- offering patients little education and less options.
My mantra, Keep pushing. For respect, for knowledge.
Do you see it yet? Do you feel the need to push?
There is change that can be made. There is change that needs to be made. There are generations coming up behind you and me, behind the children being born today and the children following them. There are millions of people yet to be born, and thousands will have a form of dwarfism.
But they will not be dwarfs.
They will be painters and doctors. They will be writers and scientists. They will be political leaders and dreamers and veterinarians. Those born with a form of dwarfism will love and be loved. They will change lives and shape the world for future generations. The way we need to now.
There is a need to define ourselves by what we want as a community and let the masses, not the few, lead the way. Television shows that pigeonhole this community, media misconceptions, movies and comedians are things of the past when we push- and keep pushing- to be defined not as little people, but as people. Height doesn’t make someone smart, or happy, or better than. Average height just makes you average.
Be spectacular regardless. Keep pushing.
When a doctor tells me they do not know, I ask, “how will you find the answer?” When I am given news about a health concern and then that same medical professional attempts to leave the room, I ask for further explanation. I ask what our course of action is. I ask what their medical opinion and experience are. What is the timeline. How do we proceed? I push to know more. I push to make them answer. To make them accountable for their diagnosis. I refuse to let Google do my doctoring. I refuse to leave not knowing.
Too many parents email me with the same story. It goes like this: The doctors told me my baby would be a dwarf. They gave me a packet of papers and told me to make appointments for these things. They told me to be prepared, but not for what.
More often than not, I offer my telephone number. I spend hours each week calming mothers-to-be and new parents. Not giving medical advice, but offering an ear and listening to questions that are left unanswered. Unanswered concerns from a doctor who left their patients with a handout and maybe a few people to call.
This is not OK. This is not how patients should be treated. Dwarfism is not unknown. Specialists exist!
In my hours on the phone I’ve looked up local hospitals with clinics, referred many to our own team in Delaware, and always given out the LPA’s website. Hours spent giving the same basic information that needs to be readily available to all patients with a diagnosis of dwarfism. Support, love and most importantly, knowledge.
Keep pushing so that when someone sees a person of short stature they smile, the same smile they offer any other human on the street. Why? Because a person of short stature is any other human.
Keep pushing to make changes, because if there is such an uprising about a professional football team name change, then there should be a change across the nation of high school sports teams named The Midgets. Because other people do not decide what offends you. Because other people don’t control our emotions. Because being sensitive, caring, respectful people is what defines a civilized culture. That is what humanity means. Because even doctors need to learn something new every day. Because bedside manner isn’t dead (and neither is chivalry, if you were wondering).
There isn’t a facet of our culture that doesn’t need advocacy from our community, so be that voice. Never stop pushing because it doesn’t bother you anymore, or because you think one person can’t make a difference. One voice. One community. One change at a time.
Keep pushing because letting ourselves be defined by anything, even things that are so apparent, like our gender, sexual preference, race or disability is no way to live. It’s no way I will let myself or my children live, and I won’t being defined by anyone but myself.
So much to say about what’s been going on, but I keep reflecting on our wonderful experience in California.
If you followed my social media pages, you may have noticed #lpaSD2014 making it’s way around with pictures, quotes, and events… all leading to the LPA National Conference in San Diego. It was amazing.
It is also something that we could not have participated in without the help and support of our parents and my aunt and uncle. Both my parents and Dave’s helped us get there (via flyer miles, rewards, food, and accommodations). I am also extremely grateful for my dearest, who works his tail off at work and then each weekend doing repairs to save up for the cost of eating away from home (yes, a BLT in San Diego is $10!). But it is more than the money. It’s the understanding. My mother-in-law was initially going to come with us (she will be attending workshops with us in Boston in 2017!), but decided that it was just too much for her… however, she still supported us going, which means the world to our family. San Diego is an awesome vacation spot, but the conference, the LPA organization and the knowledge and friendships we gain each year are invaluable to us.
Addie was blessed this year with a gift from a family who lost their child to a rare(r) form of dwarfism with a Lifetime Membership to Little People of America, and we could not be more thankful. Knowing that Addie will always have access to the best advocacy, community and medical advice, even after Dave and I are not here to guide her, eases my heart. There are so many lesser known facets to the LPA organization that I hope she explores- including scholarships and a deep-rooted community- that having this membership offers her access to all this and so much more- forever!
With that, the opportunity to go to as many regional (local) and national events as we can gives us all opportunity to learn, play, educate and be educated. Last year, I was a part of a panel that focused on social media and how we present ourselves as a community, and this year I spoke about why I keep pushing (advocating) for more education and awareness. Dave got to learn about different home adaptations and how he can make our house more comfortable for Addie without making it difficult for us. Even the grandparents got to go to some workshops and learn a bit more about what it’s like to grow up as someone with dwarfism, the things they can help Addie with, and just take part in the community.
All-in-all… this was an amazing experience. Made that much better by our trip a few hours north to see my Aunt Donna and Uncle Ted. While I am forever grateful to the LPA and being able to experience national events, being able to see my Uncle Ted meant more to me than I can express. My Mom did not find her brother until she was in her 20′s. Adopted at birth, she was able to reconnect years later with a lot of research… and I am so glad she did. My Uncle is amazing- traveling to see us a lot in my youth- and coming to stay with us for much longer than he anticipated, when my Dad passed. We often joke in my family that I was a wild child, but that didn’t really happen until my Dad died. My Uncle saw firsthand how out of control I became and how quickly I down-spiraled. But still, he stayed. Day after day he supported my Mom and did everything he could to help with the daily running of the house, and the big things that my Dad had been too sick to do in his last months of life. Going out to see him, hug him, talk to him and see the spark in his eye was more than I could ask for.
He’s sick. I hate that. I hate seeing a man who has rocked the world, serving our country, playing a major role in aerospace development, advancing the programs that offer guide and service dogs to those who need, and most of all being an amazing family man- he’s diminishing in body… but never spirit. I was afraid he would be fragile and was instead surprised to see him, stout as ever, never batting an eye when he needed oxygen or apologizing for needing a break. Quite simply, as Ted has always been, he just is. Maybe that’s where I get my no apologies life-view from… I am who I am, be damned if it upsets you or makes you uncomfortable. And my Aunt Donna, his rock, she’s kind of amazing, too. Her love, support and drive are inspiring. A teacher for years, she set Addie up with all the fun stuff while accepting oxygen deliveries, getting towels for Addie and I to swim, her beaming smile never fading.
There are some days that are really hard. For everyone. I have a family who has taught me, and continues to do so, that there are way more rainbows than rain if we look for them. I am thankful that we got to Cali this summer… for the sun, sand, friendships, education, family.
Have you done a big summer vacation this year? What was your favorite part?
I read THIS yesterday as parent after parent on my Facebook feed shared the article. At the time, I was scanning the web from my phone from beneath my dearest Adelaide, softly crying.
Although I’ve posted a few updates on her, it’s been a whirlwind since we’ve returned from the LPA National Conference in San Diego… we landed late Saturday night, spent the day jet lagged, but as a family, on Sunday, then had an incredibly busy Monday running from Addie’s physical therapy, the OB and chiropractor for me, and fielding calls from 4 different doctors (have I mentioned that when an actual doctor calls, it’s usually not good?). On Tuesday morning I said goodbye to Dave as he headed to work, and he kissed me extra hard. The look in his eye told me what I needed to know; it pained him that I would be going through a surgery without him and he had no words. Neither did I. He carried our still-sleeping girl to the car for me and kissed her face and head as he hesitantly closed the car door.
I didn’t even cry. After she was under sedation, I calmly left the room, my head spinning as I attempted to control my breathing. I gathered our belongings for our overnight stay and meandered around the corner to the waiting room where, after spending a solid 15 minutes staring at the surgical board, called my mom. Then I tried on one long-sleeve shirt, but then I was wearing too much gray, so I took it off and put on the blue one- it was from the 5k I did a few weeks ago. You’re strong enough for this, Chelley. I sat down and got out my work. I use 3 different spreadsheets to track my work, sponsored posts, links, blog posts and the like. I took out a pen and started to cross things off and move things around. I planned for a few days of recovery where I could do some work, but not a lot. I took out my highlighter and crossed off everything I’d done. I felt grateful that I have the option to push work aside when I need to because Dave takes care of us.
So back to the article. It’s a few days post-tubes (second set) and adenoidectomy and Addie was on top of me, where she’s been a lot since her surgery. Perched on my chest, or curled up around my belly inciting kicks from her baby sister, inside. She was running about 100º and shaking, her little body clad in nothing but a Bumgenius diaper, snoring and sweating through my own tank top. Every now and again, she would stir and cry in her slumber. So I read, and I softly cried, too. If you follow along with the article, I cried because:
1. Sometimes lonely doesn’t describe it. Even when I have a moment to connect with friends and family I cannot express the fear I feel. The fact that everyone in the world could be there to hold my hand, and I would still feel like I was standing alone- especially when I am there without Dave. Because when we do have time to talk, I want to talk about Addie every moment and not at all, and not knowing how to process your own emotions is a lonely place to be.
2. Dave and I are a power couple. We aren’t changing the world, but we’re shaping our own. And we have to work at it everyday. We discuss a lot of medical things, we sleep very little large chunks… but we do it all together. Sometimes we snap and bite, but the lines of communication don’t close. Sleep, fancy cars, and, yes, even intimacy can wait… but not forever. We fight for that. For this. For us.
3. Enough said. I can go mama bear in 1.4 seconds flat, however.
4. All the time. This is also due to my losing a brother, young cousin and father before I was 13. But even more so, as we look deeper into Addie’s spine and decompression and blackouts and sleep… I feel relief when she wakes up. I hate that feeling. I just want to wake up and not have my heart leap and stop until I see her ribs expand and contract with the sweet sound of her breath. I hope this fear won’t last forever.
5. Sometimes I know that my voice means less than my body. The length of my reach engulfing her body as she cringes in pain or fear at an appointment. The way she melts into my shoulder or tucks into my chest as they try to take another set of vitals, insert an IV, measure another limb. The way she won’t wear a mask unless I gently place it over her face. There are no words… just the touch of mom. Recently I learned skin-to-skin is important past infancy, as Addie craves feeling my heart beat and holding my necklace. She reaches into my shirt just to feel my skin, and I crave comforting her. Touch is so healing and speaks louder than words. When I ask her if she’s ok and she grabs my face into her own kisses me and settles into my arms. Words seemingly, in that moment, mean nothing.
6. While Addie doesn’t have speech issues, hearing your child come out of sedation like a lion screaming for you or waking in an apnea episode startled wanting only you… those are the times I cherish her communication most.
So, in light of her adenoids being removed, which gives off the most horrible breath, and my heightened sense of smell, her small shaking body, feverish and gripping, the hours we’ve spent in the same position (painful for me)… this is just what we do. And after the hours. The physical ache and mental exhaustion… the moments left in between. There’s still a light inside.
So here we are again… Hasbro Children’s Hospital! Addie is headed in for her second set of tubes and an adenoidectomy. I talked to 4 different doctors yesterday, and though I am pretty much not answering my phone if I see 401-444-#### (which indicates someone from Lifespan Hospital Network calling me), I am thankful that we have such an amazing team, willing to do all the research possible to keep Addie safe and healthy.
As many have read, we’re going through a lot of diagnosing and problem-solving for Addie’s blackout episodes, which included an MRI. Sadly, we did not have full follow through of the order, and Addie will need to undergo another round of imaging so we can get a better idea of what might be happening. For this, we will head up to Boston (in a few weeks)…. for today, we just want to get through the ENT battle.
After I wrote about needing sedation (Addie is intubated as her airways are constricted), and how incredibly apprehensive that makes me (pregnancy hormones don’t help), many people chimed in. I wish that I could say their words helped, but sometimes they hurt or scared me more. When I lost my father 16 years ago I remember a lot of other people missing “the mark” of things to say- there are a thousand articles about what to say to someone who is grieving, but what about parents and caretakers who are scared? I know that nothing said truly makes anyone feel better, but there are things that have made me feel a bit worse about what’s going on and I wanted to share them with you because many parents have told me they too feel the same way–>
1. Don’t worry.
See, the thing is… I’m WAY past that.
2. It’s not a big surgery.
If my child is in surgery, it’s a big surgery to me. It’s a part of me I’ve entrusted to the Earth in a situation I cannot even try to control.
3. Been there. Done that.
While I am aware we are not reinventing the wheel here, routine surgery for one is not for another. Please, try to not one-up others.
4. I had that, and I was OK. (Or my child did)
I know lots of people with lots of stories. I know kids that do GREAT under anesthesia. I know kids that have gone into comas from it, too. I know that when Addie wakes up she is a mess, her throat hurts, she’s raspy, she needs to be held and fights needed oxygen. I know that she gets ill, but refuses to drink or eat to help it. I know that she will be OK because we have a handpicked team, but brushing off a parent’s fear doesn’t make them feel better… or at least doesn’t work for me.
5. I know someone who died from that.
No joke. Someone told me they knew someone who had a child who died during a routine surgery- then they IM’d me their prayers. Ummmmmmm… I know things can happen, please don’t share those personal stories with me as I’m scheduling a routine surgery.
6. Try having (insert different procedure here).
This one really gets me. For some society has created a need for constant comparisons. Pissing contests. Who has it harder. I’ll tell you what, I know what hardship is. Maybe it is experience (I am still just a mom to one, and if you think back to those days, you too will remember your feelings were different then than they are now), maybe it’s age, or financial status, or location… or maybe, just maybe, it is how I feel as an individual. And it is OK for me to feel the way I do. Maybe, someday, I will experience a similar hardship to you- but if you’re that person who feels like your life is harder, it just won’t matter… I’ll never be justified. This is, if you truly think of it, tragic for you.
And now that that’s off the table… I appreciate your kind words, your loving emails, texts, phone calls. So many are pulling for Addie to feel 100%, and for that I could not be more thankful. For those who go through major experimental surgeries, I pray for you everyday and I am thankful for the love and support offered to those families. When any family is going through unusual circumstances, the support system that surrounds them gives them the most strength. Thank you, Reader, for your strength.
And so… we are back. Many times I spent my Marvelous Mondays writing about what I am thankful for as friends or my surroundings, but today, I want to be thankful for opportunity. We don’t go on date nights, or celebrate with fancy dinners or outings, most of the time the idea of vacation seems intimidating and daunting for the sheer cost factor, but we are never short on opportunity.
Much thanks to our parents, who help us do the big things in life. We’d love to cruise the Bahamas, take a trip to Disney, see the Eiffel Tower… but more than that, we want to learn and support this amazing community around us- the reason I even began this blog… we want to be active members of the LPA as fully as we can be!
Last week, we took full advantage of our membership and joined hundreds of others in San Diego.
I spent hours in workshops, gatherings, meetings and group events… to learn, to think, to take notes, to listen, to share, to dream, to wonder, to play! Addie participated in her first fashion show! I met SO many wonderful people I’d only ever spoken to online. Dave got to SIT DOWN! I spoke… in front of way more of a crowd than I was expecting, and though it was not recorded (to my knowledge), I will share the piece with you soon. We made
So, what is there to not be thankful for in life? I’m not thankful that Addie will have to undergo another MRI for more imaging. I’m not thankful that we still don’t know why she’s blacking out. I’m not thankful that there are so many questions and so few answers… in general. But who is counting? What this means is that there is more to see, more to know and more to learn. Advocating for our community, for our family and for Addie herself is never done. So let’s start this week in thanks… and get ready to work hard once again!
Happy Marvelous Monday, Reader!
Oh. Em. Geeeee!!!!!
There’s so much to say and so little time to type! I just want to let everyone know- we made it safely to the LPA National Conference- and I survived another public speaking engagement! We miss our sweet Carter Jay, but he’s having fun with his grandparents and ruling the roost.
If you are here at the conference, please let me know! I would love to meet as many new people as possible! Just leave a comment, or email me through the Contact tab! I will be posting way less this week and appreciate your understanding!