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Listen to Your Mother… that’s me!

I am still full of awe and honor to have been a part of the 2014 Providence Cast of Listen to Your Mother….

Listen to Your Mother Providence Cast 2014 #aisforadelaide

(My intro written by the talented Carla Molina at All of Me Now):
Chelley Martinka is a Philly native with a little thing for Game of Thrones. A closet drummer, she’s a mom to one awesome kid living with dwarfism and is expecting her second daughter this fall. Chelley is up next with “Do It Ugly.”

Do it Ugly

Everyday, when I look at my planner, I see this quote, Dream so big you’ll look like an idiot if God doesn’t step in!

It’s a reminder to do it ugly. To get in in past my ankles, waist deep. To get dirty, cut- go full throttle.

Growing up, I was loud. I would sneak out. I smoked cigarettes and overly enjoyed cheap beer. I played a lot of sports and I was rough when I did it. I got injured. I suffered from depression. I liked a good party. I liked to study so much I graduated college with a 3.5 in 3 years with almost no friends. I got tattooed. And then got some more. I got dermal anchors before they were a trend. I dated. I over committed to people that needed “saving” and after they were saved, I moved on. I broke hearts. I uprooted myself a lot, took on a lot of jobs, was reckless with my emotions and other people’s hearts.

Doing it ugly was more about how low I could go. How many problems I could fix of someone else’s while ignoring my own needs- uselessly helping others chase their desires. I knew I’d never stick around long enough to see the ending. Like the friend who needed money for car payments… a loan I would never see the repayment of- I worked weeks of overtime. I’m not quite sure why, except it seemed like the right thing to do. I was a wild one with a sucker-streak- looking to take care of all the people surrounding me, and sleeping as little as possible while doing so.

But then it happened. I was approached by a lion tamer with the patience of a kindergarten teacher and heart of a saint. Some have come to call him Dave. So here I was married. A wife. Together we ripped apart the money pit and created a home. We both worked long ours and enjoyed uneventful hikes with our dog and nights by the firepit with friends.

Gone was the Chelley of the past, replaced with this woman who quit smoking, ran half marathons, was letting someone else take care of her once in a while, learned to enjoy wine over whiskey and, for whom staying up late lost its once alluring appeal. Who the hell was I, now?

Not looking for redefinition, she came- The reason I had to get all riled up again. My reason for getting my hands dirty- I was ready for parenting. Here I was, rolling up my sleeves and spending late hours burning the midnight oil- literally- we have oil heat. But I was more than prepared, I’d been practicing to parent this special lady since my days as a rebellious teen.

I knew everything I did from the moment I heard her cry would be things she would be proud of. My perseverance would be her life lesson. I would work hard, and when she was diagnosed with a high-functioning disability, I knew I would dig harder than I’d ever imagined. With letters, videos and a blog, I would educate about our life as a family. I’d take attacks and hard words and fight to change the stigma. I’d create a team consisting of specialists in Massachusetts, Delaware and Rhode Island. I don’t know the answer to that, would be an answer I’d never settle with.

I would allow no one thing would define my sweet girl, a lesson I’d learned from my own mother. Dwarfism, gender, religion or a favorite band would simply be aspects.

I would raise her to be generous, dignified and tough. A woman who could do whatever she pleased, in jeans or a skirt, at a bar watching the game or in the courtroom arguing her case. With my biggest dream being a world that truly sees no difference between my Adelaide and any other human. Recognizing her disability as something about her, not something that defines her.

I spent two days bringing her into the world… and I will give my life to give her dreams so big that she never knows what the ground looks like with her eyes closed.

And while most of my days are beautiful- I work hard to make sure they are. Everything in life that feels like it’s too much is all the more reason to get in there. To do it ugly. Everyday isn’t a fight, but when it is, I make sure it’s worth it, to go hard.

This life is my one shot to make it what I want and give that power to my future warrior woman- and no one will lessen my gusto or dampen my dreams- not even God, herself.

Listen to the cast:

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Filed under Educate/Adovocate/Make Change

LPA Fashion Show #lpaSD2014

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!

LPA Fashion Show #lpaSD2014 #aisforadelaide

#aisforadelaide LPA Fashion Show #lpaSD2014 #rehearsal

#aisforadelaide #lpaSD2014 #firsttime LPA Fashion Show

#aisforadelaide #lpaSD2014 LPA Fashion Show #cuteasabutton

#aisforadelaide LPA Fashion Show #runway First try!

#aisforadelaide #lpaSD2014 #finalrunwaywalk LPA Fashion Show

#aisforadelaide #addiandjack ##lpaSD2014 LPA Fashion Show

#aisforadelaide LPA Fashion Show #addieANDPayton #lpaSD2014

#aisforadelaide #LPASD2014 #life LPA Fashion Show


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Filed under Community, Travel

Marvelous Monday

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.”

#aisforadelaide #spinaldecompression surgery #incision pre-op

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.

aisforadelaide recovery surgery colors #prayforaddie #incision

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.

#aisforadelaide #spinaldecompression #surgery incision #recovery

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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.

#aisforadelaide #recovery #dayone #incision Spinal Decompression Surgery

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.

#aisforadelaide #firstsmile #recovery #surgery #postop #incision

We left PICU around 1pm Wednesday, and Addie had some visitors, which made her quite sleepy!

#aisforadelaide #recovery #day2 #sleepingtoddler #incision

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).

#aisforadelaide #addieanddaddy #recovery #spinaldecompression #surgery #incision

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.

#aisforadelaide #addieanddaddy #incision #spinaldecompression Conversation with Dave

Thursday, August 14, 2014

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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.

#aisforadelaide #day3 #recovery #spinaldecompression #surgery incision

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.

#aisforadelaide #recovery #PT #incision

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.

#aisforadelaide #pregnancy #34weeks #baby2 #camillethea #recovery #spinaldecompression #surgery

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.

#aisforadelaide #spinaldecompression #incision #balloons #getwell

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.

#aisforadelaide #addieanddaddy #spinaldecompressionsurgery #recovery #theresnoplacelikehome #snuggles #incision

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.

love,

WARNING:

BELOW IS A PICTURE OF HER INCISION BY THE DAY:

#Aisforadelaide #decompressionsurgery #incision

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Filed under Achondroplasia, Marvelous Monday, Parenting/Family/Lifestyle

Marvelous Monday

“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.

Marvelous Monday Decompression Surgery #aisforadelaide

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.

Spinal Decompression HOlding Hands #aisforadelaide

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.

Have a beautiful week, reader. Talk soon,

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

Marvelous Monday

It was Hell. The week (plus) of recovery that was supposed to be “a few days”.

I wish that was an exaggeration, but as far as common procedures go, tubes and adenoids tops the list. For Addie, there was the consideration of her spinal compression, so we stayed one night for observation where she turned up roses. The kid was a peach.

Then Wednesday struck.

Let’s start with admission…

She was great! We played and I wore a hairnet over my hat and looked really cool. (I was annoyed by one of the nurses who kept reading her name as “Adeline”- not a great way to instill confidence in a parent- but other than that it was OK.

#aisforadelaide #smilethoughyourheartisbreaking #hospital #surgery

I wrote about the surgery before… it was fine. A-OK. And then we made it to recovery… where she was upset and groggy and didn’t really want to come out of it until we’d been wheeled to her room for our stay.

This made for a late night-  so it was nice that Dave came to the hospital and stayed with us until after midnight when she finally nodded off. We’d all eaten some Boston Market (my pregnancy fave!) and watched some movies and I was feeling relieved that, besides some pain, Addie seemed to be bouncing back quickly!

#aisforadelaide #recovery #surgery #hasbro

The next morning was still uneventful as a few of our doctors were at the hospital that morning- the pediatrician, neurosurgeon and ENT- we got a few visitors and I grabbed myself a coffee from the cart before being handed discharge papers, a bottle of ear drops and heading towards the elevators. Good-bye 5th floor!

#aisforadelaide #readytogohome #recovery #adenoidectomy

Addie still seemed great, if a bit groggy, but I expected nothing less, so we headed home. After her bath she asked to sleep, so I tucked her in bed next to me and while I worked on the laptop, she napped. It was a loud nap- her snoring was rattling my brain and she cried in her slumber. When she woke up I offered her something to eat to no avail and gave her some Motrin, as per doctor’s orders. The night got progressively lethargic as she didn’t eat much dinner and was fussy to sleep.

It was well after midnight and I’d just finished working for the night when I saw her pop up on the monitor. She shot straight up and started to cry. Something is wrong, I felt it in my bones. I ran in, Dave and I practically knocking each other over to get to her and as he shut off her air conditioning, I brought her into our room. I could feel her warmth, and as I made a request for the thermometer I felt the hot, wet slip down my back. Sweet potatoes. The ones I’d made for dinner. They’d reappeared for us onto the bed, so I stripped us both and went to wash up while Dave helped and switched the bedding.

I called the emergency line for the ENT. The doctor told me to keep her hydrated and medicated to keep the fever down and call in the morning. The fever didn’t break for days. Food was nothing Addie desired- not even popsicles or pudding. I could see her ribs. And she cried through every night, even with the ibuprofen and acetaminophen regimen we had. I felt lost. When she finally was feeling better enough to get out of bed, I saw that her head was tilted slightly forward and she wouldn’t move it up. We went for a trip out of the house- the first in days- and she’d found a way to maneuver herself so that her head wouldn’t move. While I was impressed with her resourcefulness, I was scared, too. Why was her fever still there, and the crying in her sleep and now she wouldn’t move her head…?

We went to the pediatrician. We called the ENT. We conferred with the end result exactly as I’d thought: Addie was having an extremely rare, albeit not unknown reaction to adenoid removal.

#aisforadelaide #adenoiectomy #rarereaction #surgery #recovery

But now we are here. With the help of serious antibiotics, a lot of time in bed, and fluids, and after 11 days, Addie was on the mend and closer to being herself! I am thankful for recovery… and life lessons. Many times I thought I knew what an outcome would be, and many times I’ve been wrong. In this case, I knew that Addie would be OK, I just expected it quicker. She’s my warrior and I realize that the time it took for her to heal is that what makes her so- it’s the fact that she did it with such  courage. While I felt a breaking inside, she never did. Every time I asked her if she was OK, she would take my face between her hands and kiss me. She never answered. I don’t think she wanted to tell me, “no,” no matter how bad it hurt.

How could I not be thankful for this blessing… A child who looks out for her mother.

As we embark on this week with an MRI and the final decision as to whether Addie will have spinal decompression surgery, I open my mind to being stronger and more supportive of whatever is thrown at me- because this isn’t about me, this is about Addie and she deserves that much in a mom.

#aisforadelaide #perfection #recovery #surgery #adenoids

Your love and prayers are, as always, appreciated.
Have a beautiful week, Reader.

love,

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Filed under Achondroplasia, Marvelous Monday, Parenting/Family/Lifestyle

Our San Diego Zoo Trip in Photos! #travel

I’m a blogger writer, so on this blog I tend to use words to tell my story and photos to back it up. I figured I would let the photos take the lead this time…

Here is our trip to the San Diego Zoo in San Diego, CA from #lpaSD2014! We had an awesome time and think that if you’re looking at going to this zoo, you should try to hit it up more than one day! It’s a lot of zoo!

#travel #tiger #sandiegozoo #california #sandiego #travel #aisforadelaide

 

#aisforadelaide #travel #sandiego #california #sandiegozoo #elephants #giraphs

 

#Aisforadelaide #travel #hippolife #sandiego #sandiegozoo #zoo #california

 

#aisforadelaide #travel #california #sandiego #sandiegozoo #zoo

 

 

#aisforadelaide #tiger #travel #sandiego #sandiegozoo #zoo #california

 

 

#aisforadelaide #sandiegozoo #zoo #travel #california #family

 

 

#aisforadelaide #gorilla #sandiego #sandiegozoo #zoo #travel #california

 

 

#aisforadelaide #lion #travel #sandiegozoo #sandiego #zoo #california

 

 

#aisforadelaide #nursingmother #sandiego #sandiegozoo #zoo #travel #california

 

 

#aisforadelaide #sandiego #sandiegozoo #momandchild #travel #aisforadelaide

 

 

#aisforadelaide #sandiegozoo #sandiego #travel #naptime

 

 

#aisforadelaide #sandiegozoo #travel #hippo #hippolife #california

 

That was our day! Have you ever been to the San Diego Zoo?

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Filed under Reviews, Travel

My Good Life and How I Fuel It!

New CB Disclosure 400px wide

When I wake up in the morning, I always look to my nightstand where I leave a list of what needs to be done. It’s usually long and lists times, if necessary, but what’s it’s usually lacking is a place for breakfast.

#aisforadelaide #todolist #shop #MyGoodLife #CollectiveBias #cbias breakfast

…it’s been especially hard here with Addie not feeling well and having some pain eating solid foods. Naturally, Dave worries about us, but even more so, he worries about my eating and taking care of myself- especially while pregnant. To help both Addie and myself, Dave went on a mission to find some simple solutions for his ladies.

#aisforadelaide #addieanddaddy #shop #cbias #collectivebias #MyGoodLife

A very concerned daddy!

To fuel our mornings, we need quick, easy and transportable and in the breakfast aisle of Walmart Dave found just want he wanted… an easy to mix breakfast shake that I wouldn’t fight him to drink.

#aisforadelaide #cbias #shop #collectivebias #MyGoodLife Shopping at Walmart to Fuel My Mornings

I LOVE milk, but need more than a glass to sustain me until lunch. Nestle Carnation® Breakfast Essentials™ packets are something I come back to again and again. When I was pregnant with Addie, they served as an afternoon snack at work, and now they are what make breakfast so simple for me. In fact, this is the first whole week in my entire pregnancy that I’ve had breakfast with enough calories and complete nutrition. Seriously… 32 weeks today and I’ve finally accomplished breakfast on a routine basis. Go me!

#aisforadelaide #shop #cbias #CollectiveBias #MyGoodLife Fuel Your Morning with Nestle and Carnation Instant Breakfast


I feel like I had the opportunity to have breakfast because Addie has been under-the-weather and so we’re not rushing to her usual classes… but this also leaves us home all day and my sweet lady still not able to eat like her usual self- leaving her little ribs looking rather exposed. Knowing this, Dave and I have gotten really creative with just getting calories in her, but we don’t want to load her up with junk. What we came up with comes from the same family as my breakfast solution: Nesquick®. While Addie has never had any special milk flavoring (just plain, organic 2%), the need to get more calories in her with some vitamins took over, and as I mixed her a cup and we started our day (with lots of appointments), she gladly took it!

While we won’t use Nesquick a lot, it is nice to have knowing there are a few upcoming procedures she will be going through and some of them will render her hopeless in terms of feeding. Milk is the way we usually go to get energy in our sweet girl to just keep her going through the days of recovery. I am so thankful to have found something to help us boost her vitamin intake in  a tasty way!

It’s hard to get up and take care of everything that needs to get done in 24 hours for the house, your kids and family, while remembering yourself, but breakfast is the most important meal of the day! I try to remember that I am not just helping my family thrive by giving them the best nutrition, but by taking care of me  I am setting a good example, too.

Thank you to #CollectiveBias for helping us make breakfast a regular meal in this house again! This is #MyGoodLife… what’s yours?

#aisforadelaide #MyGoodLife #CollectiveBias #shop Fueling my Family's Morning

How do you make sure that you have breakfast every morning while still getting out of the house on time?

GARD Pro Skipped due to post having too many words in it which are on the filter list.

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Filed under Reviews

All day, overnight and in between… 10 Must-haves

A friend of mine wrote THIS awesome guest post about 10 things you need in your bag when you’re admitted… but what about those all day and overnight stays?

For us, we just went through a morning admission to Hasbro Children’s as Addie underwent her second ear tube placement and adenoid removal. I’d spent the wee hours of the morning working, and knew that I would need to get work done, unless there was an emergency. Being at 30 weeks, I needed comfort, too. So… my child is in surgery and I need to work, be comfortable and somehow not lose it every time she pain cries (because besides breaking my heart, I’m already lactating when I hear a child cry). How does one accomplish this in one bag? First… make the bag big. Check out these other tips:

What's in the bag for overnight hopitals stays with a toddler #aisforadelaide #hospitalbag #toddler

1. Big bag with long shoulder straps
I used a beautiful silver tote we just got from a friend… it fit everything I needed PLUS the wide open top made it easy to rest my wallet just inside- this gave me access to Addie’s insurance cards, my ID, money… all the good stuff I needed to pull out a million times. The long straps means it can fit over my shoulder and the stroller handles, and it has no pockets, either. I just throw it all in and go- no searching in different compartments for what I need.

2. Stroller
Even if you don’t use it for your child- all of your stuff will have a home-base! For me this meant a place for my bag, diaper bag and a place to throw whatever little things I needed to throw down in the basket- like flip flips, or my just-in-case sweater. Having a place where all of your stuff goes is invaluable. It may all get jumbled- but you’ll sort that out later.

3. Extra clothes/Flips flops for you and your child
I always pack a just-in-case sweater… it’s for if I get cold, need to wrap up as a pillow, to swaddle my girl in her darkest moments. It’s for just-in-case. I wear sneakers when we are at the hospital- keeps my feet warm and clean and I don’t have to worry about tripping, but I pack flip flops just in case, too. I may need to get up in the middle of the night, or shower. Whatever the case, I slide them in the bag so they’re there. I also pack clothes so that I can feel fresh- a new t-shirt and underwear can bring more comfort than one can imagine in stressful times… and for the babe, I always make sure to have an easily accessible outfit (nightgown or loose top and pants) so that she can be in her own clothes, but still work with the docs and nurses. Extra clothes also means that if your child gets sick post-surgery, you won’t end up covered in it for the rest of your stay.

4. Your own washcloth, socks, pillow
I bring extra thick socks so I don’t have to wear shoes in the hospital room- SO much more comfortable. If you’re a picky sleeper (I really need to become one), your own pillow is a must at the hospital. And towels can be really scratchy and thin. Although an overnight stay doesn’t warrant a shower in the room (at least not for me- I wait til I’m home), sometimes vomiting after a procedure happens and trying to towel off with their linens is bad enough- not to mention washing your face at night. While I don’t pack a whole towel, I bring a wash cloth (color so they don’t get confused), so I can wash my face and sponge bath Addie comfortably.

5. Snacks and cash
Packing a few favorites that are OK to have post-surgery and need no refrigeration (pudding, applesauce, toddler food pouches) is great for your child, especially when first getting them to eat. For me… some crackers with peanut butter, fruit, and something sweet (chocolate!) are musts. I am thankful we have family close so I can get something more substantial to eat, but to have a few things to nibble on when there is nothing else there is key to keeping my mind, stomach and blood sugars as even as they can be. Cash is king, too. I bring it so I can tip the coffee cart or run to the vending machine if I can’t get away to get myself real sustenance for a long time.

6. Wipes… face, hands, diaper
I love wipes. I use them to clean my face when I’m stuck under a sleeping baby, or too tired to move. Cleaning your skin at night is so important… but so are recovery snuggles. To make sure I don’t skip me while caring for her, I keep a pile of wipes next to our hospital bed. Along with those are diaper wipes, pacifier wipes (those are life savers for when the bink drops to the floor), and Mustela Wipes for Addie’s hands and face- these are gentle and smell SO good! Sometimes it is hard to get up and do- to rinse in the sink or wash hands. Wipes make it easy to stay clean and fresh without too much movement- especially important for someone coming off of heavy medication.

Inside the bag for an overnight hospital stay for #baby and #mom #aisforaldelaide #hospitalstay #overnightbag

7. Lotion and chapstick (plus essentials)
While I pack our toothbrushes, a hair brush with an extra ponytail holder always on the handle, there are two other things I don’t enter the hospital without. Hospitals are dry. End of story. I always carry lotion of some sort in my diaper bag, but throw in hotel bottles of lotion (thanks to Dave’s business trips) to the hospital bag and keep one next to the bed. Dry hands are the worst, and sometimes Addie likes a back rub… why not give her a little spa treatment while she’s feeling so down? I feel the same way about my lips. My mouth always gets dry, so I keep a balm or stick close by so my lips don’t crack- and for Addie, too. When she’s only on IV and won’t take fluids, I like to keep her lips moisturized, too. We also bring our own…

8. Water bottle
I bring a big 24oz Tervis water bottle with me everywhere. Dave got it for me in San Diego- our one souvenir!- and it’s my favorite. It’s double-walled insulation means that it doesn’t sweat everywhere and make a mess, the lid locks closed and the space means I have more than just one sip of water at a time. Addie’s water bottle is Pottery Barn Kids Mackenzie and is great because it keeps fluids chilled, it’s easy to clean no matter where we are, and the straw portion gives her easy access. Knowing that we both have water in our own containers that won’t spill or sweat everywhere is great for us. I love not having to deal with plastic cups (that Addie spills from and create lots of trash) and a plastic pitcher that sweats everywhere makes the night easier… especially with my history of open containers next to my bed.

9. A recovery bag (gift)
Addie has some awesome uncles and auntie in Philadelphia and they sent her (and me) some goodies that we received in the mail the day before surgery. I packed them all up and gave them to her post procedure (with a hospital gift shop Elmo balloon). Picking through the bag and exploring new books gave us something to pass the time and enjoy when we got home, too!

10. 3 items from home
For Addie, I made sure to pack Elmo, her blanket and her [current] favorite book. A few things from home make for comfort and a sense of calm. For Addie, her blanket and Elmo are needed for sleep (and easily washed at home), and reading is one of the things that both capture her attention and put her to sleep. We love that our hospital has lots of great movies for her, but for downtime, books and a bit of home really help us settle in. For me, I bring my phone charger, Day-Timer, and cell phone. The phone and charger are no-brainers, but the planner has numbers, names, schedules, business cards with addresses to Addie’s medical team, and photos of family. This all encompassing book is my life being dragged around and helps me plan anything that we may need to without hesitation- it’s old and ragged, but it’s been  my lifeline for over 10 years and the most important thing I carry.

Though it sounds like a lot, all of this fit right into my bag!

What do you bring on overnight hospital stays?

This post is not sponsored!

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Filed under Parenting/Family/Lifestyle, Reviews

Highlights… better than when we were kids!

In exchange for a blog post, we received multiple issues of Highlights magazine. All opinions are my own and not swayed by outside sources.

Years ago, I was a Highlights kid. I circled all the differences between pictures, stuck stickers to everything insight, enjoyed reading articles with content designed just for me, and loved doing puzzle after puzzle of different mediums (I’ve always enjoyed word puzzles more than any!)… so naturally, as an adult, I am drawn to the brand again.

When Addie was under a year, I ordered her a subscription to Hello! Highlights magazine for the youngest of babes, from 0-2. They’re awesome- AND impossible to tear. We’ve collected them all to share with Millie!

#aisforadelaide #HighlightsHello #HighlightsMagazine #shop

I was so enamored with how much Addie loves getting her own mail and magazines, that I contacted Highlights to learn more about High Five!, their magazine printed up just for toddlers ages 2-6! I was delighted to get a few free copies so I could share them with Addie… who I knew would love them- I didn’t anticipate how much, however.

On a rainy day, we pulled  out the issues we were sent to try and Addie got right to work.

#Aisforadelaide #shop #highlights ##highlightsmagazine #highfive #highlightshighfive

What strikes you first is the beautiful, full size magazine itself. The covers are all beautiful illustrated and just like mine- with some of the feature articles on the inside. Addie felt pretty cool with her own mag.

#aisforadelaide #shop #highlights #highlightsmagazine #highlightshighfive #jointhefun

She loved reading the short stories, identifying hidden images and actions,  but became engrossed in the Read Aloud in English and Spanish section. The stories are really vivid, and offer lines in Spanish- which Addie repeats often and usually in context (she speaks more Spanish than I do now!), which integrate well into the story. Not only is she using another language, but she’s learning to identify different objects and emotions in Spanish.

#aisforadelaide #spanish #highlights #highlightsmagazine #shop #highlightshighfive

Each magazine is also packed with puzzles (“That’s Silly”, a find it game) and step-by-step images (with captions) showing different activities, like sitting crisscross applesauce, crouch, jump and jog (like a frog!), action rhyming with movement- different each month! And our favorite, a recipe or craft at the end!

#aisforaldeiade #HighlightsHighFive #shop #highlightsmagazine That's Silly

A super cool one we want to make for Daddy is a painted paintbrush! Taking a plain paintbrush with a wooden handle, you turn it into a colorful, polka-dot brush, perfect for spreading sauce over your favorite BBQ! Or in our April issue, where we learned how to make our own play-dough. And in May, we made some delicious Crunchy, Nutty Muffins- perfect because the ingredients were so basic- we already had them on hand, and it was simple for Addie to help me measure and mix! These mags are perfect because they offer SO much in each issue that we can come back to them time and time again and learn something new- plus, Addie loves to try and find things by herself and tell me stories about the pictures each time she revisits!

#aisforadelaide #highlightsmagazine #highfive #learning #toddlers

Addie helping me make Crunchy Nut Muffins- a Highlights High Five recipe!

I am so excited to order Addie her own yearly subscription so the fun can last all year- and every time we pull out the magazines! From rainy day activity, to a magazine to read during quiet times that will surely be needed after Millie’s arrival, High Five! is the perfect addition to our mailbox as a special treat for Miss A!

Also on my radar? Some NEW projects to be released for all ages! Highlights is working on releasing something for us parents, as well as a new magazine series sure to excite… don’t worry- I’ll share more info soon!

What’s your favorite memory of Highlights? Mine is the doctor’s offices that carried them so I could read a magazine in the waiting room, just like my parents!

 

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Keep Pushing

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.

#lpaSD2014 #LPA Speakers Night

As I embark upon the birth of my second child, I find the title of my piece ironic.

Keep pushing.

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.

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.

 

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change