Friday, February 12, 2016

Special Needs Spotlight || Piper Grace



I’m Meghan and my husband Ross and I live in Massachusetts and are parents to Piper Grace who was born 13 weeks early and is now 6 months old. We also have two dogs who were our babies before Piper came along. I am a Speech-Language Pathologist, though I am currently not working to be home with Pipes. I’m a Texan/Californian who moved to Massachusetts for graduate school, met Ross, and never left (and after last winter that means it’s true love!) Thank you so much for including our story in this spotlight!

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Miggy: Hi Meghan! Thank you so much for being here today and sharing your NICU journey with us today. Your daughter was born premature--3 months early--and while she is only 6 months old now (yay baby girl!)  and you don't yet know how her premature status will affect her in the months and years to come, you did spend 95 days in the NICU with her and that is quite a story on it's own. Lets start at the beginning, at what point did you realize your baby was going to be born very prematurely and can you tell us about that day? What was her birth like? How did you feel? Can you compare your feeling then, to how you feel now?

Meghan: This was my first pregnancy so I didn’t know exactly what to expect. I was pretty healthy aside from a little morning sickness right up to and including my doctors appointment at 26 weeks where my blood pressure was perfect. A few days later Ross and I had planned a weekend outing to the Berkshires and I was feeling very ill. I had a terrible headache and just felt “not ok”. We stopped at a small hospital on our way and found my blood pressure to be 206/117 (normal is about 120/80). They gave me morphine to dull the headache and magnesium sulfate to reduce my risk of seizure from the high pressures. They then transferred me back to a hospital closer to home, where I had initially chosen to deliver anyway, but which also has one of the highest performing NICUs in the world.  At this point I still thought that my pressure would get under control and at worst we just missed a fun weekend and maybe I was looking at some bed rest. The doctors tried every medication possible to get my pressure under control but nothing would keep it down for long. I remember a doctor sitting in my hospital room saying “you aren’t leaving this room pregnant, we just can’t say when that will be.” That’s when it hit home. That’s also when the team decided to begin inducing labor because my pressures were no longer safe. We tried induction for an additional 3 days before my lungs began to fill with fluid and I began to have clonus in my legs, a sign of impending seizures. So at 2am Piper Grace came into the world by C-Section. She was 2 pounds and 12.5 inches long. The surgery was intense and awful.  The doctor who delivered her said it was the most grueling in his 30 years of practice.  Apparently my uterus clamped down around her tiny body when the waters were removed. I ended up with a T shaped scar on my uterus because they had to keep cutting to get her out.  Her back was very bruised after this and the OB was convinced he had broken her tiny arm, but nothing showed in an x-ray. The most awful part of the delivery was the silence when she was delivered and the doctor looking around the curtain, he was white and sweating and just said “It doesn’t look good.” I thought I was going to crumble right then. Thankfully my husband was sitting beside me being very strong. Then, about 20 minutes later they rolled Piper by me in an incubator as my surgery was being completed. The NICU team said she only needed to be intubated for 12 minutes to get surfactant to open her lungs, but now she was breathing on her own. I was immediately calmed and in awe of her strength. I later learned her first APGAR score was 0--no signs of life. Piper was then wisked away to the NICU and I focused on enduring the rest of my C-Section since my spinal block had worn off and I could feel every stitch and staple. I was stunned and in pain during the experience and have a great deal of left over trauma (similar to PTSD) from her birth. It’s difficult to speak about the delivery without reliving it.


Miggy: So your daughter is born and she is in the NICU, now what? How did those first few days and weeks play out? How quickly did you realize that this was not going to be a short stay?

Meghan: As they tell you in the NICU, it’s a roller coaster. Nothing could be more true. While the first couple weeks were scary, Piper had a bit of a honeymoon where everything was going well and she was tolerating all her medications and they started giving her drops of breastmilk through her feeding tube to prep her gut for feedings, though at this point she was getting all nutrition intravenously. Since she was a 27 weeker we knew that we would be in the NICU until around her original due date (13 weeks after she was born). I was in the hospital for 4 days recovering from surgery so I could be wheeled up one floor to visit her, which brought a little relief from my fear and sadness but I also desperately wanted to be home with my husband and dogs and in my own bed. I first held her when she was 4 days old and it was perfect. It made leaving the hospital without her a little easier. I want to also mention that a local rotary club set up webcams (NICView) at each isolette and a system for parents to log in and see their babies from home. I cannot express how much this helped. I could call at 2am when I was in tears missing her and they would turn the camera on her and I felt a bit better. I cannot imagine a NICU stay without that system.


Miggy: Can you walk us through a typical day when your child is in the NICU? Did you have other children to care for at home? Jobs to balance? Were you able to come everyday?

Meghan: My husband took about a month off (unpaid) then went back half days until Piper came home from the hospital. My contract with the school where I worked ended at the end of the school year in June so I was luckily not torn between the NICU and work. A typical day at the NICU looked like this: wake up around 6:30 and pump (I pumped about every 2 hours at this point). Then call the NICU after shift change at 7am to see how her night was and who her nurse for the day would be. During this report I would ask her current weight (measured in grams) and how many bradycardia/apnea episodes she had overnight. I would generally try to make the 25 minute drive to the NICU around 8 am so I could be part of her morning feed (NG tube feeds in the first month or so then bottle/breast feeds). I would participate in all care including diaper changes, taking her temperature, etc. In the early days I would do hour long kangaroo care sessions where I held her skin to skin, and in the later days I would hold her until I went down to the cafeteria for lunch. One of the hardest parts of having a baby in the NICU is having to ask “permission”to hold your own child. After a quick lunch I would return to her bedside and either participate in rounds (where the doctors, students, and specialists meet and discuss the progress of each baby in the previous 24 hours) or feed her again.  After 5-6 hours in the NICU I was pretty much emotionally and physically drained (I was still recovering from a C-section and also had 3 kidney stone surgeries when she was in the NICU). My husband usually visited in the evenings and I would often join him. Though some days I needed to rest at home, which definitely caused the mom-guilt to rise up.


Miggy: Could you talk a little about what it was like emotionally to have a baby in the NICU? Was it a rollercoaster of emotions, did you and your spouse/partner cope well, did you find ways to cope? What was the hardest? Was there anything surprisingly pleasant?

Meghan: A rollercoaster is the absolute perfect way to describe the NICU. Babies tend to have a “honeymoon” period the first week or two after birth like Piper did. She did fantastic, needed minimal support, and generally tolerated everything well. The only hard thing in those early days was that micro-preemies drop weight after birth like any other baby so we watched her go from 2 pounds to 1 pound 8 ounces. After that time period she began to have more episodes of apnea and bradycardia. Basically her heart rate would drop and she would hold her breath. Sometimes she would turn blue then gray and limp and need to be “bagged” ( a few rescue breaths of oxygen with a mask and bag). Those were the worst episodes to witness and honestly once you see your child that way you can never get it out of your mind. It’s hard for me to convey the emotional difficulty of having a child in peril for 3 months. It feels like a constant state of heightened adrenaline. You are never really able to relax. We were always wondering when the next episode would happen, if a head ultrasound would show bleeding, if bloodwork would show something negative. Ross and I handled it differently and often found that we couldn’t be the rock the other needed at all times. It’s a really difficult thing to do as a couple, but in the end I feel like we are stronger and closer for this experience. We learned so much about each other because we chose to work through the issues that came up rather than ignore them. I don’t know if anything about the NICU is particularly pleasant, but I did enjoy the relationships we forged with the NICU doctors and nurses and one other family in particular.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Meghan: Piper is still on a pulse oximeter/heart rate monitor when she sleeps. It tells us that her oxygen levels and heart rate are ok during the night and naps (girlfriend sleeps 13 hours at night!) The sensor and cord are on her foot 24/7 then we just plug the cord into the monitor in her room.  We were at a Christmas party for Ross’s work and one of his coworkers asked if that was something we used to keep her warm.  Like we would plug in her cord and she had a tiny heating pad wrapped around her.  We had to laugh at that one.


Miggy: Sometimes friends and relatives don't know what to do when someone is going through a situation like this. Can you give us some advice about appropriate and positive ways people can help when someone you love has a child in the NICU for a prolonged period of time? Is there something you wish other people knew so as to avoid awkward or hurtful comments or situations?  

Meghan: I know everyone is different when it comes to these things. Some moms don’t like when people comment on how tiny their baby is. But when Piper was 1 pound 8 ounces she WAS tiny. I didn’t mind those comments because it acknowledged the situation we were in.  Plus people usually followed it with “and she’s so cute.” I would suggest not comparing anything in your life to the life of a NICU parent. I know it is human nature to want to compare but saying things like “I know how hard it is for you to leave her every day because I miss my kids so much when they are at daycare” is a silly comparison. I would recommend an alternate like “I miss my kids when they are at daycare so I can’t even imagine what leaving her nightly is like for you.” It lets you try to sympathize without suggesting you know what it’s like. I also recommend not talking about future children. You may think it wouldn’t be a time people would bring that up but they do. I had a very traumatic delivery and feel as if future pregnancies are too much of a gamble, which is really sad for me. Other women may have had a traumatic delivery and hysterectomy and may be dealing with that. Lastly in terms of comments, I recommend not asking why a baby is early. There are many reasons that babies are born prematurely and in general, unless you are really close to someone, those reasons are none of your business.  (And if you are close to the family you already probably know the story). There are some great ways you can help people when they are enduring an extended NICU stay: 1. Understand that they might not know what to ask for.  My sister in law was great about saying “I’m bringing by dinner this week, you choose the day.” and she would drop dinner with no expectation of socializing. It was a huge help and we really missed home cooked meals.  2. Our daughter’s total NICU bill was roughly $1.1 million.  Much of this is covered by insurance but there are things that are not, like my husband taking that month off (his employer was unfortunately not very supportive of our situation). We set up a GoFundMe site and received very generous gifts through that which allowed us to be with our daughter when she most needed it. 3. Come to the NICU and let us show off our baby. We love showing off our baby like any other parents so if you can put the NICU scariness aside and visit it’s great.


Miggy: What is the biggest lesson you’ve learned since becoming Piper Grace’s mom?

Meghan: The biggest thing I’ve learned is to be grateful. We became friendly with a couple in the NICU whose son ended up passing at 4.5 months old. We take nothing for granted. There are days when motherhood is very difficult, as it is for any new mom, but I try to look at the bigger picture. We work on gratitude in our family daily and we credit Piper (and her angel friend) with this perspective. My daughter went through heel sticks multiple times a day, PICC lines, IVs, NG tubes, respiratory assistance, and so much more. I’m pretty sure if she can do all that then I can get through a my day without too much complaining.

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Meghan thank you so much for sharing this journey with us today! On a personal note this was perfect timing as I have a friend who is just embarking on this journey (again) and it was really good for me to read this and have a little idea of what they are going through and what lies ahead. This is really helpful for those of us who haven't been in this situation to understand just how hard it can be and exactly what that rollercoaster looks like day-to-day. I appreciate your honesty with things like PTSD after childbirth--it's so important for people to hear and be aware that it is a real thing that can have real ramifications in a woman's life. Thank you for sharing an experience that was so difficult to revisit. And lastly, gratitude. What a wonderful blessing to have learned. I truly believe gratitude changes everything. 

Thank you lovely readers for sharing and reading another special needs spotlight. I always appreciate your continued love and support. If you or someone you know would make a great special needs spotlight please email me at thislittlemiggy at gmail dot com! I'd love to hear and share your story!

Have a great weekend. 
And Happy Valentines Day.
XO

Miggy

Wednesday, February 10, 2016

Special Needs Parenting: I'm not a better mom than you


I posted the above IG photo a couple weeks ago--and understandably, the photo got a lot of attention. Lamp had painted her toe nails all by herself. You can see the entire caption here. But there was a little more to the story and I wanted to touch on that today. 


In preparation for an upcoming trip I asked the girls if they wanted to paint their nails with me. Yes! Yes! Yes! So as we're getting all the nail stuff out Lamp tells me she wants to paint her own nails. "No." I say, "Let Mom help you."

"I can do it myself mom. Emily let me do it." (Emily being a babysitter she had last year.)

I get the nail stuff down and set it on the dingy, bathroom floor. It's an old bathroom and since we're getting ready to renovate it soon, it's the safest place in the house for a nail painting party with my kids. While I'm still getting stuff out, Lamp grabs a bottle by one foot, starts untwisting the cap...I help her untwist still assuming that I'm going to be the one to actually paint her nails. I turn away for a couple seconds and when I turn back around she already has her big toe nail painted.

It's on there a little thick, but other than that it looks great. Stunned I say, "Wait? Did you just do that? By yourself?"

"Yeah mom...I told you I could do it. Emily let me do it last year and then you told her not to let me do it anymore so she didn't."

Gulp. And oh *$&%.

While I knew they had done some nail painting in the past I didn't realize that 1) Emily had let Lamp try painting her own nails and that she had succeeded, and 2) I didn't realize that apparently, I shut that crap down.

This was one of those sucky mom moments, especially as a special needs mom, to realize I completely underestimated my kid and even worse held her back from something she had already proven she could do.  Palm slap on the forehead. Not only that, but in hindsight what was I so worried about? Probably that disgusting, 60-year old, baby blue bathroom tile. Good job mom.

Moms in general are supposed to have this I believe you can fly! I believe you can touch the sky mindset all the time. And often I think this message for special needs moms gets amped up a bit. Whenever you hear stories of people with disabilities there is storyline of how against all odds--their diagnosis, the doctors, their peers, their teachers--they accomplished this great feat and in the background there is the mom who "never gave up on them." Because as we all know "special kids go to special families."

Brief pause: The last thing I want to do is write another "to the parents of typical kids" post or "dear world, this is what you're doing wrong" post. I have written a few of those posts in my time and while it's important to share our experiences and certainly to advocate for things you believe in,  I think we need to be careful in this idea of telling everyone else how to think and act about every little issue. So if you get something out of this post, great... if not that's fine too. I wrote it mostly for me. Back to our story...

Not a huge fan of that line "special kids go to special families." But I can't say I'm offended either. I get why people say it. Honestly, I think some of it has to do with our hero/victim views of disability (which need to be corrected, but aren't any one person's fault) and of course people are trying to be nice and positive. One of the reasons that line bothers me so much is that it's simply not true, and no matter how well meaning an untrue statement is, overtime it's going to do more damage than good.  According to statistics, children with disabilities experience a much higher incidence of abuse than children who don't suffer from disables. And while I don't have any hard and fast data ready for this one, children with disables are abandoned all the time, and I would assume at a much higher rate than children without disabilities. Do you remember the popular "baby hatch" in China a few years ago where people could drop off unwanted children no questions asked? Well in the first 11 days an unprecedented 106 children were dropped off in the 'baby hatch.' ALL 106 children had disabilities or medical conditions. Of course there is more nuance to this story as well...poor families who can't afford health care, etc. But c'mon, you can't ignore that data either. So yes, not a fan of that saying because in part it turns a blind eye to the real issues children with disabilities face.

But even for us families who love and cherish our children who happen to have disabilities, I don't like or want the added pressure I sometimes feel to live up to this amazing mom label that occasionally gets placed on me. I am someone who tends toward self-deprecation anyway... I guess I'm much more comfortable with an "under-promise, over-deliver" mentality when it comes to people and their perception of me. That being said, I also don't believe in the idea of sharing the negative sides of ourselves as a means of "being real." The complexity of who I am is not any one thing--and certainly not found in the extreme of my best or worst parenting moments.

So why am I sharing all this today? What is the point? If I'm not trying to 'air dirty laundry' and I'm not trying to tell you how or what to think... I guess I just want to add that nuance to the world of special needs parenting, to strip away the extremes. Because when I'm put on a pedestal for doing nothing that special or out of the ordinary, my worry is that I can just as easily be villainized when I underestimate, get angry at my daughter or unfairly punish her--because again, I do that with all my kids from time to time.

I'm not a better mom than you, I'm not a worse mom than you. Like everyone else, I'm just trying to give myself permission to be...good, bad and inbetween.

I wonder if any of my fellow special needs moms feel this? Do you feel like people automatically place a super-mom badge on you whether it's deserved or not? Do you ever feel like people watch you with a more critical eye when it comes to parenting your special needs child--like if you were to loose your temper at your child with special needs vs the one with typical needs do you feel like people would look at you with more contempt and judgement? Did this resonate with anyone else? 

Monday, February 08, 2016

Eazy, Peazy, Last-Minute Valentine Ideazy

Valentines for Kids || This Little Miggy Stayed Home

I have a confession, I don't do that many crafts with my kids. I love the idea of doing crafts with my kids and I would like to do more, but when my oldest daughter gets on Pinterest and is like Mom! Lets make a giant squid hanging lantern and wind chime all in one! All we need is a hula-hoop, 6 yards of organic cotton fabric cut it 2 inch wide strips, a light bulb wiring kit, fishing twine and 12 feet of copper pipe cut in 1 foot increments!  I start to twitch, while my eyes roll back in my head. Then I contemplate the inevitable fate in store for us all, which is that she'll lose interest while we're in the check-out line of home depot, while I stay up past midnight cussing at a hole-hoop squid I never wanted to make in the first place.

But my other confession (if you can call it that) is that I love a sweet homemade  craft, Valentine's included.

When it comes to crafts, and in this case classroom Valentines, I want the idea to be simple, easily executed and for some reason the most important thing is to have all the supplies on hand. I don't mind taking a little time to actually make them while I hang out with my kids, but I detest driving around to gather craft supplies for an 'easy craft.' I had the idea for these super simple Valentine butterflies last week and the only thing I had to buy was a bag of Valentine candy (full disclosure: I also needed more construction paper, but that is something I usually have on hand). One piece of construction paper folded 3 times, with 1 simple cut will yield 2 Valentines! Some stickers and a handwritten message, glue on your candy bar and your done. Homemade valentines for kids don't have to be that hard, and with a little effort, they can be super adorable.


Supplies:
Construction paper (not card stock, it will be to hard to fold)
scissors
markers for writing/drawing
stickers  or even sequins, glitter glue etc. (optional)
glue (I ended up using hot glue)
fun size candy bars (not pictured)
valentines for kids || This Little Miggy Stayed Home


Directions
First, take your paper and fold it in half hamburger style (PSP taught me this! It means the short way, as opposed to hot dog style, the long way--ha!) Then fold it in half again, and in half one more time for a total of 3 folds.
valentines for kids || This Little Miggy Stayed Home

Now you're going to cut half a heart shape on this piece of paper.  Assuming you're right handed, hold the paper in your left hand  and the long sided fold on the right and the open parts of the paper on the left. You want to make sure that instead of ending the cut on the same side as you start the cut, you want to end it on the bottom of the paper so that you include the corner of the folds in the heart. (I've drawn it out below so you can see the heart shape, but no need to draw it when you cut on your own).
valentines for kids || This Little Miggy Stayed Home

Now cut your half-heart shape. It should look like this:
valentines for kids || This Little Miggy Stayed Home


Open it up to see a heart, open that side to see a set of heart shaped butterfly wings, and pull them apart to see 2 sets! Wash, rinse, repeat.
butterfly valentines for kids || This Little Miggy Stayed Home

Decorate and  then hot glue a fun-sized valentine candy bar in the middle.
butterfly valentines for kids || This Little Miggy Stayed Home

Then do it a few more times!
valentines for kids || This Little Miggy Stayed Home


The Valentines above where the ones I made for the tutorial, but the girls made their own to give out to their classmates (well Lamp will take the ones I made as well as doing 11 on her own would be a little too much.)  Lamp couldn't cut the butterflies out herself  (which would be tough for lots of 5 year olds because you're cutting through lots of layers), but PSP did the cutting, writing, and decorating herself...of course I also assisted with the hot glue.
valentines for kids || This Little Miggy Stayed Home


There you have it! If you need a last minute Valentine for kids this is an easy one and you most likely have everything (minus the candy) you already need!

Friday, February 05, 2016

Special Needs Spotlight || Ella

type 1 diabetes || This Little Miggy Stayed Home

Hi there! I am super excited to be part of the spotlight. We've followed along from the beginning, and I always learn something new. I am Alissa and  am mother to three fabulous girls (7, 4 and 1) and married to the love of my life. I am a Pediatrician by day (well, 2 days a week anyways) and momma by night (and those other 5 days). My darling Ella was was diagnosed with Type 1 Diabetes a few years ago, 2 years and 8 days ago, to be exact. We just celebrated her “diaversary.” Ella is the kind of kid all parents of a diabetic dream of… she is responsible, smart, observant, helpful, kind and an all-around good kid. She makes it all look easy. We are lucky to be along for the ride.

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Miggy: Well hello Alissa. We actually go back quite a ways as roommates from our college days--you're one of the few people who knew me when I had pink hair! Additionally, you have been a huge support and help over the years as you are a pediatrician. You reached out right away when you heard I was pregnant with Lamp and you even gave me access to an article in the American Journal of Pediatrics that I eventually gave to our geneticist who confirmed, through this article, that our daughter most likely had microgastria and limb reduction complex! (Did you even know that?) Phew! That's a lot of history. But today, we're here to talk about your daughter Ella and her diagnosis with type 1 diabetes. Let's start at the beginning, when did you start to see signs and symptoms that something was off with Ella? How long did it take for you to get an official diagnosis and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?
Alissa: You not only had pink hair, but you rocked it LONG before anyone else even thought of it! A trendsetter from the early days. (insert Miggy: I’m blushing. Please continue…)
Ella was diagnosed in January of 2014 when she was 5-years-old. We were on a family vacation on the Big Island of Hawaii. After a few days of living in the same hotel room I noticed that she was getting up a few times in the night to go to the bathroom and she was drinking more water than usual. At her recent 5-year-old check-up we discovered that she had only gained a pound over the past year (in reality she had gained a normal amount of weight, but she had been losing weight for a month or so). We didn't think too much of it, and I had actually packed cans of Pediasure to bulk her up. But the triad of weight loss, lots of drinks and lots of potty breaks made my pediatrician brain a little worried. On the second or third day of our trip it started to rain and our plans of exploring the island were shelved. Since we weren't doing much, I decided to stop fretting and just make sure Ella was fine. I called the hotel doctor (did you know such a thing existed!?!) and arranged to test Ella's urine at a local clinic. A few hours later the doctor called me and let me know that her urine had lots of sugar in it. I immediately knew she had Type 1 Diabetes. In that instant I was acutely aware that our life had changed. I knew enough about Type 1 to know what it meant for Ella and our family. I broke down and wept. But, in a gift from God, I was able to quickly snap out of it and was given clarity, peace and calm for the rest of the week. We immediately went to the small island hospital where they ran some confirmatory tests and officially diagnosed Ella with Type 1. We spent the night in the hospital, but because of my background they condensed our diabetes training from the typical week to a few hours and we were able to go home the next day. We were lucky that we caught Ella's diabetes so early. Left untreated, Type 1 causes kids to get really, really, really sick. Thankfully, Ella never got to this point. With hindsight, however, we realized that she had lost her spark. During the months before her diagnosis she had been dull and emotional. One day she said, "Sometimes I try to have day where I don't whine, cry or fuss AT ALL. And then I cry and I think, 'Maybe tomorrow's the day."  The poor girl was trying so hard to be good, but her blood sugar was all over the place and she felt crummy!  Within hours of being out of the hospital and back to the hotel Ella was swimming and laughing and there was literally a twinkle in her eye.
I actually think I dealt with the Type 1 better early on. I was cheery, gung-ho and all "save the pancreas!" As time goes on, and the reality of every single day becomes more clear, I’m a little more down on it. Initially I was convinced that we would have a cure, or at least major major advances, by the time Ella is a teenager. I now know that diabetics have been promised a cure within 5-10  years for the last 30 years and I’m less optimistic. But the advances in technology and the way we manage diabetes has definitely improved. And that makes quality of life worlds easier. So I guess my feelings on it now are more realistic with the long haul in mind.

type 1 diabetes || This Little Miggy Stayed Home

Miggy: As you stated in your email there is a lot of misconceptions about type 1 diabetes. Can you educate us about type 1 diabetes (as opposed to type 2)? Could you also explain how type 1 diabetes affects Ella and your family's day-to-day life?
Alissa: Type 1 Diabetes is an auto-immune disease. For some unknown reason (probably a combination of genetics and a triggering event, maybe a virus) the body gets confused and starts attacking the cells in the pancreas. This leads to the destruction of beta cells, the cells that make insulin. Insulin is the key player in digesting carbohydrates (sugars) and allowing the cells to use it for energy. Because the body doesn’t make enough insulin, you have to give it via a small injection.
Type 1 typically presents in childhood, although it can show up in adults. Signs of Type 1 are weight loss, being thirsty and drinking lots, urinating frequently and/or having accidents at night, fatigue, sudden vision changes, increased appetite, fruity, sweet, or wine-like odor on breath, labored breathing, vomiting, and unconsciousness (obviously, a late sign). Testing for Type 1 is super easy. All you need is a urine sample. So if you are even kind of worried about your child, just get them tested.
Of the 29 million people in America who have diabetes only 5% have Type 1. Given that they are both usually just called “diabetes” it’s inevitable that there will be some confusion. While the two are related, they are very different.  This can sometimes get annoying. (Check out Type 1 Nick Jonas’ response to someone getting the two confused here) When I asked Ella what she wished people knew about Type 1 she said, "It's okay for me to eat sugar. And you don't get Type 1 because you ate too much sugar!" Ella can eat whatever she wants. Cake, candy, ice cream...bring it on. But every morsel of food that goes in her mouth needs to be accounted for. And that’s where it affects our day to day life. The pancreas is an amazing beast. It figures out how many carbs are in whatever you are eating and gives you enough insulin to cover it. If you are fasting or being active and you use up all your glucose, it taps into a supply in your liver and keeps things in check so you don’t pass out.  Since Ella’s pancreas is a dud we try our best to do its job. We weigh food, calculate and make lots of guesses to figure out how many carbs are in everything she eats. Then we (well, it used to be we—now it’s her pump) calculate how much insulin she needs for that amount of food. Her insulin pump has a teeny tiny tube inserted into her stomach that we swap out every 3 days. She also has a cool device on her leg that keeps tabs on her sugar at all times. We change that one every 6 days. She still has to check her sugar 1-2 times on a good day, 10-12 on a bad day. But she’s got sweet calluses on her fingers so it doesn’t hurt that much.  
For the most part, Ella leads an incredibly normal life. She plays the piano, does gymnastics, and loves playing with her sisters and friends. She is smart as a whip and is in a Chinese-immersion program at school. We’ve helped educate her teachers on how to help with her diabetes, and she has a helper at lunch who makes sure she checks her sugar and gives herself the correct amount of carbs the food she will eat.


Miggy: What are the biggest worries you face for Ella? Conversely, what are your hopes and dreams for Ella?    

Alissa: Oh, the worries. It’s part of my training to always default to the worst-case scenario, which is a blessing and a curse. Every time she is away from me I worry that her glucose will drop and she will have a seizure, or worse. This makes it tricky when she wants to do normal 7-year-old things. Any time she goes to a new friend’s house, or does a new activity or sport I have to decide how crazy I want to sound when educating the adults on diabetes. I vacillate between, “If you mess this up she could die! Be really really careful!” and “It’s no big deal, just treat her like you treat everyone else.” I’m learning to walk the middle ground. Every night I worry she will go low. One of the rare complications of Type 1 is going really low during the night and never waking up. It terrifies me. We now have a monitoring system in place so if she is out of whack I will get an alert on my phone. But I still check on her nearly every night.
On a broader scale, I worry about the long-term health effects of diabetes. We try really hard to manage her sugars well, but we aren’t perfect. While we hope for a cure, and research is promising, currently this is a life-long disease. I also worry (well, not really worry, but think about) the fact that she will always need good access to health care.
I have the same hopes and dreams that I have for my other girls. I want her to grow up healthy and happy. I want her to find love, be kind, be successful in whatever brings her joy. I want her to have healthy pregnancies and bring me grandbabies (far, far, far in the future, of course).



Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  


Alissa: When Ella gets low, she gets grumpy and emotional. Once, a few months after diagnosis, we were at a family party and she came in weepy. I thought she was just being whiney and said, “Ella, you are acting like you are 40 and you are not! Pull it together!” We checked her sugar and she was 36 (which is crazy crazy low). She reminds me of that one from time to time…
The whole family gets in on the carb counting act, which can make us look like super health nerds. The other day we were waiting to get my oil changed and my 4-year-old was playing with an app on my phone that tells you how many carbs are things. “Mom! There are 15 carbs in half a bagel! There are 5 carbs in a cup of green beans!” The nice lady next to us thought we were cuckoo.


type 1 diabetes || This Little Miggy Stayed Home

Miggy: Type 1 diabetes is not super visible as far as a condition goes (yes there is a pump, but from what I have seen this is usually under clothing) and as you said above there is a lot of misconception about it. How can people best approach or respond to Ella and her diagnosis? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Alissa: Ella and I differ on this one. I want people to ask questions so we can have a conversation. Ella just wishes people would ignore it and treat her the same as everyone else. When kids ask her about her pump (they often think it’s a cell phone), or what having diabetes means her stock answer is, “I have diabetes. My pancreas doesn’t work. It’s complicated.”
When I am leaving Ella with a new adult and they find out she has diabetes, they occasionally go white in the face have fear in their eyes. I love it when people ask me to explain what diabetes means for Ella and for them while she’s in their care. I worry that Ella will be excluded from things because people are afraid of the Type 1 (this hasn’t happened, as far as I know. Just mom worries).


Miggy: Since you are both a mom and a physician, if you could say something to another mom who is just starting on this journey of type 1 diabetes, what would you say?  What would you say to yourself if you could go back in time?    
Alissa: You will have days and weeks where you manage it with the greatest of ease and can conquer the world. You will have days and weeks where you are drowning and want to curl up in a ball and hide. Both kinds of days come and go. Don’t let the hard days overwhelm you. Ups and downs are what this life is all about. You’ve got this. And by no means is it all bad. Since Ella’s diagnosis we have become tighter as a family. Ella has become incredibly responsible. Even if we could give Ella her pancreas back, I’m not sure we would. (Eh, that’s not true. We would. But I wouldn’t give up all the things we’ve gained and learned).
type 1 diabetes || This Little Miggy Stayed Home
Miggy: What is the biggest lesson you’ve learned since becoming a type-1 diabetes mom?
Alissa: Empathy. Every day when I go to work I take care of sick kids and worried families. I now do it with more kindness and understanding and patience. Life is hard for everyone. For some the hard is easy to see, and for others it is not as visible. But for the most part, everyone is just trying their best and can almost always use a helping hand or a kind word.
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Alissa, this was fantastic! Thank you so much--it's always fun to interview someone I know in real life. First, I loved your honesty... knowing that your daughter has type 1 diabetes and then dealing with that day in and day out are 2 different things. Not to mention that as of right now, this is a life-long condition. That is no small thing. And I was surprised (maybe even relieved?) to hear that managing type 1 diabetes can sometimes be tricky EVEN IF YOU'RE A DOCTOR. That will be so great for so many mama's to hear! And yes to empathy and seeing the world in a more gentle light...the world needs more empathy. Thanks for a fantastic spotlight and for sharing your sweet Ella girl with us. Give everyone a hug from Auntie Miggy for me! (haha--Wink.)

Thanks everyone for all your love and support! I'm always so grateful for people reaching out and sharing their stories...there is so much tho learn from each other's experiences. So please if you or someone you know would like to share your special needs journey please email me at thislittlemiggy at gmail dot com.

Have a great weekend!

Tuesday, February 02, 2016

A Return to Hiking


Saturday we had crazy beautiful January weather. It was in the 60's for crying out loud. Obviously a hike was in order. More than just being excited for a warm day in winter, this hike felt especially exciting as it was the first time I've hiked since my herniated disk over a year ago. Hiking alone I'm sure I've could have handled many times, but hiking with our family means B wears Lamp on his back and I wear Zuzu on mine. And I did it! I hiked carrying Zuzu on my back and it was fantastic! It had been so long since I had Zuzu in the carrier that at first she was not having it. But after just a few feet, looking around and seeing her big sister in a carrier next to her, she loved it.

The hike itself wasn't very long or challenging, or even that amazing if we're being honest (most of it was a dirt path but since it was super muddy we only let the 2 little girls down on this boardwalk), but getting out in nature and being together as a family is as nourishing as the fresh air and movement of our legs. I grew up in a family that didn't do a lot of activities together--I don't want that for my kids. I've learned that the activity itself isn't nearly as important as the simple act of gathering as a family and sharing experiences together. Sure, maybe if you're surfers, hikers or campers that activity becomes part of your family identity, but I think that regardless of what you do it's really togetherness that becomes part of your family identity, which helps create your personal identity, as well as lasting family bonds. Ever since we hiked Arches as a family I had been excited about more hiking (and camping) but when my back situation happened, all of that stopped. And that wasn't the only thing that stopped--I stopped rigorous workouts, I avoided picking up my kids at all costs, even sitting in the care for more than a couple hours at a time was out of the question. But no more! I am happy to report that my back is no longer in constant pain. I can't tell you how great it feels to be pain-free and to live life without first worrying about my back! I gave an update a while ago on my back progress and particularly the role acupuncture played, but I have a new update and something I'd like to share with any fellow back-sufferers out there.




The quick run-down on my back:
--In November of 2014 (1 year 3 months ago) I started to have some lower back pain that in the course of a few hours went from mild back pain to a trip to the ER a couple days later because I was in such severe pain
--I'm talking CRAZY back pain that left me unable to walk (or take care of my kids in any capacity) for 2 weeks, second only to natural childbirth on my personal pain scale.
--Through medication and rest things got gradually better. About 6 weeks out I was about 85-90% better, but with that lingering 10-15% still causing me near constant pain. I assumed that in a few more weeks I would get back to 100%. (Wrong.)
 --I was constantly advised to be careful with my back so I backed off my regular work-out routine, (but started doing yoga 3-4 times a week) and I stopped picking up the kids, heavy groceries or anything that would strain my back. I even avoided sitting for long periods of time.
--Sometimes I would go a few days at a time feeling better, but never more than a few days.
--The following July I had a replapse that while not as bad as the first time, but I was again off my feet for about a week. This time I started to become more emotionally affected. Would I ever be pain-free again? Would I ever be able to work out and return to an active lifestyle? I was starting to feel hopeless.


After that relapse, I decided I needed to get more serious. So I started physical therapy and acupuncture. I honestly couldn't believe how well acupuncture helped--the first time I went I felt immediate relief! I kept going and even went when I didn't feel pain for the sake of maintenance. I was so relieved to finally have results and to feel relief from the pain that I even blogged about my experience with acupuncture here. I was sure I had finally found the answer. I figured that I would continue treatment for a while, but that eventually my appointments would be further and further apart until I no longer needed them. Unfortunately, one day I went to treatment and my back pain didn't go away. I tried to be relaxed about it, but this was definitely a source of stress and worry for me. I went the next time and it was a little helpful, but not much. 4 or 5 more trips later and sadly acupuncture suddenly wasn't working for me anymore.

In search of more answers one night I came across a couple books. The first was Healing Back Pain: The Mind Body Connection. No thanks, a little too new-agey and far fetched for me. The next was 8 Steps to a Pain Free Back--the focus of this book was all about posture and how we hold ourselves in our modern Western society and the incidence of back pain, vs the back pain incidence of our forefathers and even in current indigenous cultures today.

To make a long story short (too late), I ended up buying both, but it turns out that the first book--Healing Back Pain: The Mind Body Connection is what has really turned things around. Initially I was super skeptical, but it really makes a lot of sense to me...and it has made ALL the difference in the world, I would highly recommend it for anyone suffering chronic back pain. The book is not about how it's "all in your head" which would mean the pain isn't really there, your mind is just fabricating it. No, the pain is there and it's real, but the source of the pain isn't that there is something wrong with your musculoskeletal system, but rather the source of your pain is emotional stress. The author, Dr. Sarno, makes the comparison to ulcers. Ulcers are one of the few maladies that doctors will agree stem from an emotional issue (stress, worry), yet with most other maladies the medical community at large (Western medicine) is slow to attribute causes to an emotional issue. You really have to read the book (and some of it is a little repetitive) but honestly, just reading the book, addressing some of the causes of stress in my life and returning to normal physical activity (one of his recommendations) have been amazing. The book has over 1k reviews on Amazon and 4.5 stars. To be clear the author definitely recommends seeing a doctor if you have a incidence of severe back pain! (As do I!) But if you've been dealing with a chronic issue and nothing else has seemed to help, I really recommend this book. In all honestly I started feeling better even after reading just the first couple of chapters.

Like I said, at first I was hesitant...mind body connection? What's that? The thing is I am definitely someone who believes very strongly in the connection of our physical and emotional health, the spiritual and the physical even. I love yoga, I dig meditation (and need to do more of it) I believe our thoughts are the most powerful factors in determining who we are. But at the same time I also believe in Western medicine.  I've taken medication for postpartum depression and have no problems reaching for the Advil when I have an ache or pain. I assumed this book was going to cross some sort of line in my head about mind/body healing... I assumed (wrongly) that Dr. Sarno was going to suggest I use my mind to heal my back, like use meditation and visualization to push my disk back into place or something. But it's not like that at all...and really, what turned me around were all the reviews on Amazon. Like anything, I don't think it's a one-size-fits-all situation--somethings work for one person, they don't for another...but for me this was just the information I needed. I still have little twinges of pain from time to time, and have even had it jump from my lower-back to my neck (he actually talks about this happening) but overall this has been the best advice/prescription for my lower back. I could write about this for a while and go deeper into my experience, but I'm going to leave it at that... but if anyone has any questions for me about this I'd be happy to share more!


Anyone else ever dealt with chronic low back pain that didn't go away? Did anything finally work, are you still looking for something? What about the whole family togetherness thing? Did you grow up with a family that did or did not spend a lot of time together? How did that affect you? If you're a parent do you feel as strongly as I do about family togetherness regardless of what you're actually doing? (Although, doing things the kids enjoy should certainly be part of the plan or eventually they'll revolt!)

Friday, January 29, 2016

Special Needs Spotlight || Rebekah

thoughts on accessibility || This Little Miggy Stayed Home

Hello, lovely people! My name is Rebekah. I am a writer and teacher who lives in a very small, very old house with two chunky orange cats in Kansas City. I’ve been paralyzed for as long as I can remember but did not begin to really unpack what this unique embodiment meant to me until I was in my mid-twenties and began working with disability studies in my PhD program. As I studied for the first time things like the social construction of disability, I began to process a lifetime of memories and feelings connected to my body. While I spend a lot of time writing long-form pieces about my connection to disability, I recently started an Instagram account, @sitting_pretty; I use this account as a medium to 1) reflect on what it means to live as a disabled woman, 2) connect with others who are also processing what it means to live from a particular body, and 3) share more beautiful, nuanced photos of a body that looks and moves differently than most.

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Miggy: Hi Rebekah! I'm SO glad to be featuring you today on my special needs spotlight series. I know you from your lovely instagram account @sitting_pretty and I can't remember if you found me or if I found you but I'm so glad we found each other! In addition to being beautiful, smart, poised (and a little sassy) you are also a paraplegic and a wheelchair user. A lot of your IG posts about accessibility have really struck a chord with me. But lets start at the beginning...you were born a typical and healthy child, but were diagnosed with cancer when you were 14 months old. The tumor wrapped around your spinal cord and by age three you were paralyzed. You also spent a significant amount of time in your early years in and out of the hospital treating your cancer. What do you remember about those early years? Do you remember what it was like to walk? Overall how would you categorize your childhood (or do you)? Looking back now, do you have a different view of how those early years have shaped you?
Rebekah: I actually don’t remember very much from those early years going through the chemo, radiation, and operations. In some ways, those years feel more like my parents’ story than mine. They have very sharp memories of what it was like to watch their youngest baby fight deadly cancer for years, and I have to struggle to imagine how I might have experienced the stories I’ve only heard about myself. I’ve watched the fuzzy, 1980s home-movies taken of me in the hospital with my bald head and baggy, yellow hospital gowns so many times, I wonder what I remember and what my imagination has fabricated into a makeshift memory. I do have a few very vivid clips and snippets from that time that I hold onto tightly: my dad singing songs to me while he pushes me across the street toward the hospital in my ratty blue stroller; using a permanent blue marker to draw scars to match mine on my baby doll while my mom napped; a doctor sticking my paralyzed legs with pins, shouting “Do you feel this?” I don’t remember the months upon months of nausea and vomiting from the chemo, I don’t really recall the needles or the surgeries, I don’t have a single memory of walking, and I can’t imagine what having full sensation in all of my body might feel like. In some ways this feels like a giant gift, and in other ways, it makes me feel largely disconnected from myself. Those years were incomprehensibly formative for who I am now, and I can’t recall them. (But maybe that’s the same for all of us in one way or another.)
It’s difficult for me to trace how these years shaped me. From my earliest moments, I was (understandably) encouraged to be brave and strong and happy in the midst of my pain, and I absorbed this so thoroughly into my body and mind that it took me until my early twenties to understand its larger implications. On the one hand, I think it made me pretty fierce. I am capable of barreling through almost any challenge I decide to tackle, and I like that about myself. On the other hand, I did not develop the skills to recognize my emotions. It’s like those early years of smiling in the midst of pain slowly burned off all the sensors in my body that could tell me when I was unhappy or uncomfortable or discontent or frustrated or sad, and without these sensors to guide me through life, I was pretty lost. In my early twenties I had a pretty significant break-down that motivated me to go to a wonderful therapist who has worked with me the last five or so years on learning to process my emotions, trust my own perspective, and use my feelings as a guide to take care of myself. So, the early trauma had a powerful effect; parts of me were bolstered into steely strength while other parts of me atrophied. This give-and-take seems rather inevitable for something as potent and destructive as childhood cancer.

Miggy: You are the youngest of 6 kids. Can you tell me what your family life was like growing up? I'm sure cancer, chemo, paralysis, and wheelchairs threw your family for a loop! How did your parents handle these unexpected changes? Did you have great support from your family and siblings? Was there anything you wish they would have done differently?
Rebekah: I have two sisters and three brothers, and growing up they were the safest and happiest place in my world. I’ve heard that during my treatments my siblings were often the only thing that could make me smile; they still seem to have a superpower ability to make me laugh more than anyone else. I know in my head that my paralysis must have brought significant changes to the family system, but that’s not how my memory recorded it. From my tiny perspective, my paralysis became a regular fact of life very quickly, about as consequential as my brother’s retainer or my sister’s pierced ears. More than paralysis, I remember Swedish pancakes in bed for our birthdays, delivering May baskets on May Day, marshmallows arranged in a smiley-face in my chocolate Malt-O-meal, secretly listening to Weird Al tapes while my parents were on a date, memorizing all the lyrics to Sound of Music and belting them at the top of our lungs, having underwater tea parties with my sister at the pool, making “magic potions” with all the soaps and powders in the bathroom, falling asleep to my Dad singing us hymns. There were no accommodations made to our house, and I did not start using a wheelchair until I started first grade (about four years after I lost the ability to walk). I slept on the top floor on the top bunk in a bedroom with three of my siblings, pushed a little red tricycle around the neighborhood, and used my walker to make up dances (that I liked to perform for my dad when he got home from work). I found creative ways to use my body to do the things and go the places I wanted. During those first years of paralysis, I lived in this content bubble with my family; they saw me like I saw me – capable and beautiful. In essence, they hardly acknowledged that anything had changed at all, and this was both wonderful and damaging.
While my family saw me as the same little person they had always loved, the world saw me differently, and eventually, I started to realize this. People, especially other kids, stared at me –long stares that followed me down the hall. Kids at school were obsessed with pushing me and my wheelchair around the playground, which made me feel both special and not. I began to notice that I moved differently than other people, and I started to clamber less and stay seated in my wheelchair more. This only got worse as I moved into middle-school – the most horrible age for all the human people of the Earth, wheelchairs included or not. I cringed through one dance with one boy at one party and felt so uncomfortable I wouldn’t be able to dance happily and easily in public until I was twenty-five. By the time I hit my teenage years, I felt unattractive, undesirable, and overall unworthy. But, as I mentioned before, I had no skills for understanding the grief I was experiencing, where it came from, or which feelings were valid and which weren’t. I continued to play my chipper part, but my internal world was crumbling. So, not acknowledging my difference at home made me feel accepted but left me unequipped for processing the fact that there were ways in which I was, in fact, quite different. I felt both infinitely loved and hopelessly alone, supported and abandoned. While I don’t blame a single person for this – I have no confidence that I could have handled it any differently had I been in their positions – I do wish I had had an advocate to walk through some of that with me at the time.  

thoughts on accessibility || This Little Miggy Stayed Home

Miggy: As I said above one of the things that I really resonate with in your IG posts have been the difficulties surrounding accessibility as a wheelchair user. Having a daughter with a power chair we have quickly learned that the world is not accessible! As a disabled adult, living on your own (getting your PhD no less) what is your day-to-day like? Is accessibility a struggle in your daily life? In short, what do you want able-bodied people like myself to understand about the importance of accessibility?
Rebekah: I’m glad my posts on accessibility resonate with you, because I actually struggle quite a bit to articulate my thoughts on this. On the one hand, I want people to understand that I am a capable, strong, independent person who can load my wheelchair in and out of my car and bump down a curb and help carry the Christmas tree home, no problem. On the other hand, I want it to be recognized that the world is not made to accommodate a lot of bodies (mine included). This lack of accommodation is a drag; it often drains me and requires I rely on another person to help me do what I want to do. So I don’t need help, and I also need help; I am independent, and also sometimes dependent; I have found a way to access, and the world is largely inaccessible. All of these things are true at the same time, and it can be a challenge to represent all of it clearly.
I suppose if there’s something I want all of us to consider when it comes to accessibility, it might be to consider the scope of that word--“accessibility.” While I’m always and forever in favor of programs that promote more accessible places for more people, I find that comprehensive accessibility is actually a whole lot more complicated than finding the right tools or making the appropriate modifications. When I think about genuinely “accessible” spaces--the kind of space where I feel safe, included, connected--where I can take a deep breath and know my needs will be met--part of what I see is ramps and handicapped spaces, but mostly I imagine more and more people who are open, present, and flexible about what it looks like to be human in this world. I wish for us to hold back on our assumptions about what it’s like to live in another body--to stop pretending we know how difficult or how easy something might be for another--to recognize the vast discrepancy between our experiences of the same places. I don’t want to be praised for learning to adapt, or pitied for challenges I encounter. Some tasks may look difficult for me that are actually quite simple, while other times I might make something look pretty easy when it actually costs me quite a bit. I think most of us are in the habit of make sweeping assumptions about what it’s like to live in another body, when, in fact, we all experience the world differently from each other in one way or another for this reason or that. So. Let’s hold back on our assumptions, let’s be kind to each other, let’s try to understand what the world feels like from another body, and let’s try to make things as comfortable for each other as we can.
          
            
Miggy: I've written a few posts about the problem with pity (here and here) when it comes to having a disabled daughter and how her biggest obstacles aren't her physical limitations, but the limitations that come from society and from people who think of her as "a poor thing" or who "feel bad for her." I'm curious if you agree that accessibility and physical limitations are smaller problems than pity and the way the public sometimes views the disabled community.
Rebekah: Absolutely, yes, I do agree. One of the most draining parts of living from my particular body, I find, has to be my constant push against the cultural narratives being told about disability and bodily difference. The strangers who approach me at the store or in a parking lot to tell me how brave I am (for essentially just making it to the grocery store?), or the acquaintances who tell my partner how amazing he is for being with a woman in a wheelchair. Sometimes I feel like I’m trying to hurl a giant stone wall off my back just to be seen as a whole, three-dimensional person in the world. Our culture represents disability in such confining roles; we are allowed to be the victims who inspire compassion or “charity” (gag me), or the heroes who motivate the non-disabled to live life to the fullest (because, if a person is able to accomplish anything with an impairment, think what a person could do with the use of all their parts!) (double-gag me). Both of these roles are designed to serve the observing non-disabled person, and really has very little to do with the actual human being living life. In fact, I think these victim/hero narratives are part of why our world remains so inaccessible. The “super-crips” (people with disability who triumph over their adversity through individual determination) contribute to the belief that people with disabilities really can do everything a non-disabled person can do, if they just try hard enough. And the pitiable ones are portrayed as hopelessly dependent on the benevolence of others. Either way, why invest too much in making the world more accessible for these bodies?
So, yes, I do agree that the cultural scripts written for those with disabled bodies are perhaps the most punishing aspect of living with a disability, and I see these perspectives as intricately linked to the state of the tangible world we live in (architecture, media representation, employment rates, etc.). One of my biggest hopes and goals is to contribute to increasing and bringing more nuance to the cultural representation of disability. We need to move beyond that victim/hero paradigm! And, in the words of Eli Clare, “we need images--honest, solid, shimmering, powerful, joyous images--of crip bodies…” That is one of the things I love so much about the photos that you post to your Instagram/blog--you contribute beautiful images of your family that show the beauty/humor/normalcy/idiosyncrasies of living life with a different sort of body. I LOVE that, and I feel greedy for it; I wish for so much more of it in the world.

thoughts on accessibility || This Little Miggy Stayed Home
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?   
Rebekah: Ha! Yes, life definitely presents plenty of moments when I’m in the middle of something that makes all the strangers look at me like I’m crazy. My friend and I running away from angry geese when I hit a curb and fly out of my chair, laughing so hard I can’t get back up (what does that even look like from across the street? Not sure…) Or riding piggy-back on my friend’s back into the 7/11 because we didn’t have room for the wheelchair in the car – the manager was so furious for our “rabblerousing” until he realized I was paralyzed and immediately groveled like the worst sinner. Or the AT&T repairman who came to my house to fix my internet, then sheepishly asked me what word I used to refer to the chair I used to get around. He’d been told to refer to it as a “freedom machine,” but felt too awkward to actually throw the word into our casual conversation. There’s plenty of absurd to go around over here! :)

Miggy: Living with a visible disability has unique challenges, in an ideal world how would you like people to approach and/or respond to you? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Rebekah: I’m approached by well-meaning strangers nearly every time I go into public. People wanting to help put my chair in my car, carry my groceries, hold a door open for me, retrieve paper towels for me in the bathroom. People wanting me to explain my body to them, how long it’s been disabled and why. People wanting to pray over my body for its healing. (This actually happens more than you might think, and, if we’re keeping track, this is my least favorite thing in the world.) My brain recognizes that people wanting to reach out into a world of strangers and help me is some sort of beauty; who complains about strangers wanting to carry her groceries for her? Me, apparently (puts face in hands).
I’ve spent a whole lot of time trying to pinpoint what it is that I don’t like about these wannabe acts of kindness. The funny thing is, I really don’t mind accepting help from the people closest to me. My boyfriend will tell you that I do not hesitate to ask him to take out my trash and shovel the snow off of my ramp. My sisters can testify that I don’t resist when they offer to push me along the sidewalk in the cold winter or carry my mug of coffee across the carpeted living room for me. But I think this is because they already know me; their extension of kindness is wrapped up in care for a human that they know to be capable.  
Of the hundreds and thousands of interactions I’ve had with strangers out in the world, I can only remember one that left me feeling good about myself. A man walked up to me as I loaded groceries in my car and said, “I was going to offer to help you, but you really look like you’ve got it figured out.” He didn’t make a big deal out of it – just said his thing, smiled, and moved on. Years ago, this man made this comment to me, and still it stands out so starkly against almost all of the others. He looked at me with open eyes, reading me as an individual person and not a stereotype.
After thousands of interactions with strangers out in the world, I’ve realized that my body is very quickly read as a sort of handicapped girl caricature. I suppose, if I could choose how people saw me, it would be entirely detached from any preconceived notions of disability or wheelchairs. I wish for people to wait just one beat past their automatic gut-reaction, to listen, to reconsider old ways of thinking about bodies or strength or beauty before doing anything else.
thoughts on accessibility || This Little Miggy Stayed Home

Miggy: As a paraplegic and wheelchair user you probably have a unique point of view on life and see things from an angle many others don't see… Is there anything else you want people to know about you, your life or disability in general? If you could give any advice to a mother whose child has just become a paraplegic what would that advice be?
Rebekah: For a lot of my life, I felt mortified by my body. It was the worst part of me; I wanted to hide it, ignore it, pretend it wasn’t what it was. As I grow, I’m beginning to recognize the truth and power in the very simple idea that “all bodies are beautiful.” Because they are alive, because they have shapes and textures and colors, because their pores have absorbed one minute of this crazy planet, because they have thoughts and feelings and weird little preferences, they are drop-to-the-floor-stunning miracles of gorgeous life. If I could talk to a mother whose daughter was newly paralyzed, I would tell her to learn this organic, spirit dance of acceptance and delight in difference, so that she can teach it to her daughter. This does not mean she needs to ignore the fact that a lot of the world still believes very few bodies are beautiful enough. She will be reminded of this fact over and over and over again, which will probably hurt, and that’s okay. It’s OKAY for her to feel frustrated, tired, misunderstood, cranky, and not up to the challenge of the day, cause even then, even in those moments when she feels the most flattened, she is still a wonder to behold. I think the more we understand this, the freer we are to love and create and enjoy and connect and be.

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THIS. I LOVE THIS SPOTLIGHT. Please, dear readers, share this far and wide. It's so hard for me to narrow down everything that spoke to me as a mother of a daughter with a visible disability and a wheelchair user, but first let's talk about Rebekah's definition of accessibility. BOOM. (Where is a 'mind blown' emoji when you need one?) Yes we need more ramps and parking but mostly we need "more and more people who are open, present, and flexible about what it looks like to be human in this world." And we need to push beyond the victim/hero scripts of disability. YES and YES. As a mother I worry a lot that Lamp will be held to a higher standard as someone who must "overcome" her disability and have a good attitude while doing so. She does't need to be a motivational speaker, a Paralympic athlete, extra smart or anything else (although those are great things). I hope for her that she is just allowed to BE. I once said that disability rights are the final frontier of civil rights (and I took some flack for it too) but the idea isn't that we've solved the issues surrounding race, gender equality, or sexual identity but as a society the conversations surrounding disability issues haven't. even. started. At least not in a meaningful way. When Rebekah says, "I do agree that the cultural scripts written for those with disabled bodies are perhaps the most punishing aspect of living with a disability, and I see these perspectives as intricately linked to the state of the tangible world we live in (architecture, media representation, employment rates, etc.)" Do you know that the disabled community is the largest minority in the world,--a minority the size of China--but the least represented in the media? This is a problem. THIS is why I do what I do, why I share these stories week after week. (And why I love ChangingTheFaceofBeauty.org). Having a stronger representation of disability in the media directly correlates to moving beyond the victim/hero stereotype, it helps to "normalize" for a lack of a better word disabilities and will actually translate to employment and equal opportunity for people living with disabilities. This TED Talk helps break this down a little more. And lets remember Rebeka's final thoughts: "All bodies are beautiful." Because they are alive, because they have shapes and textures and colors, because their pores have absorbed one minute of this crazy planet, because they have thoughts and feelings and weird little preferences, they are drop-to-the-floor-stunning miracles of gorgeous life." Amen and amen.

Thanks again you guys for all your love and support over the years. So please continue to share and like and comment on these stories. They are so very important. And if you or someone you know would like to share your special needs journey please email me at thislittlemiggy at gmail dot com.

Have a wonderful weekend.