Wednesday, October 07, 2015

Loving the Bomb and Sucking Out the Poison

If you've been feeling inadequate, lonely, unnoticed, and completely unremarkable this post is for you.

If you're struggling to find your tribe, your people, or learning to 'invest in people who invest in you' then this post is for you.

If you're feeling worthless and somewhat unaccomplished, this post is for you.

If you're feeling like you're doing an OK job at lots of things but not a great job at any one thing in your life, this post is for you.

I know, pretty heavy for a Wednesday morning and for someone who typically counts herself as having "good self esteem" and generally "thinks highly of herself" and who incidentally also likes "to overuse quotation marks" but yes, I have been feeling all of the above for some time now and because I usually work these things out through writing I'm going to try to work some of this out today. I'm not sure if I'll hit publish, but of course if you're reading this then we'll both know I did.

Lately, I keep going back to 6th grade, which for me happened to be at Goddard Middle school in Littleton, Colorado. I had always navigated the school social scene fairly well. I had a lot of friends  in elementary school and had always been part of the (forgive me for saying this) cool kids group. As far as I was concerned I dug school and school dug me and 6th grade was shaping up to be more of the same. As is commonly done our middle school was the product of two different elementary schools merged together, which also meant the subsequent merging of the social hierarchy from these same two elementary schools. Having never had a problem with these types of mergers before I was confident I would once again be a key part of the social scene and surely this would be the best year yet.

You've no doubt deduced by now that this is not what happened.

As that first week of 6th grade commenced and I set about networking as per the usual customs--sitting with my old friends and the new cool girls for lunch, hanging out in front of school before the first bell rang--something  inexplicable happened... I struck out. Somehow that first week there had been an unofficial yet official vote cast and I was black balled and deemed unworthy of this new 6th grade super group.

It took a while to really sink in. Surely there had been some mistake... why weren't my old friends speaking up for me? Why didn't the new girls (who were definitely the queen bees) find me cool enough?

Did I have my bangs properly rolled and hair-sprayed into a stiff claw-like structure?  Check.
Did I have an interesting back-story about being bitten by a dog on the face over the summer? Check.
Was I wearing Esprit? Check.

What else could I have done? I don't really know what happened, but the facts remained--I was not welcome in this group. Having no other options I became what was known as a 'follower.' A follower was someone who wasn't really part of the group but followed them around anyway during lunch and recess. I knew they weren't my friends, yet some of them had been my friends and so I kept pretending like these kids were my friends, my peeps. Except I wasn't pretending--I knew they didn't want me around but the further we got into the school year the more other friendships and groups were being cemented into what seemed at the time to be impermeable 6th grade tribes of solidified friendship that would last for all eternity, and I missed my window to break into another group. I was stuck. And it sucked you guys, it sucked rocks. 

Of course like all trials I also gained a whole new perspective on my life at the time. I understood how quickly things could change and how precarious friendship could be at this age. I now knew what it felt like to be 'uncool' and to have people consider me as less than. And I also knew this wasn't real. What I mean by that is that I never actually believed that I was uncool or unworthy of their friendship, I just thought they missed the memo. I distinctly remember thinking, Oh...they don't get it. I'm actually really cool and funny. So much funnier than they were in fact. This is actually a really important sticking point here people--I could not believe how unfunny these girls were and yet the kids... they laughed. I don't blame them. In the communist world that is the 6th grade social structure when Chairman Mao makes a joke, you laugh. Anyway, for a while I was actively trying to change the situation, hoping that a well timed come-back or a really sweet cardigan would ease me into fold. But of course that never happened. And while I subtly tried to change the situation, fortunately I never thought about changing myself.

I survived that year and the one thing I knew for sure was that I would never put myself in a situation like that again. This was the first time I would be learning the lesson to "invest in people who invest in you." I eventually accepted the fact that those girls didn't want to be my friends and I had to move on.

So I did. I devised this really awesome and tactical plan over the summer.  Ready for it? Make Amber D. my best friend. That was my entire plan. Sure it was an all-my-eggs-in-one-basket type of plan, but what did I have to lose? Miraculously, it worked. Amber and I became best friends during those next two years of middle school and I attribute some of my very favorite childhood memories to our friendship. Amber and I are still loosely in touch, I went to her wedding 6 years ago and we cried when we saw each other. Even though we don't talk often I still count her as the first true friend I ever had. We didn't get in petty fights, we didn't do any of that middle school girl crap to each other. We were just really good friends. And as time and distance separated us over the years we would always pick back up where we left off. In the end, being kicked out of the cool kids club was one of the best things that ever happened to me.

Back to the present day. One of the most surprising things about being a grown up is realizing that I don't have things more figured out, I have them less figured out. Having moved 4 times in our 10 years of marriage, all while becoming a mother, learning how to parent and how to be a wife while still trying to maintain me is difficult at best and one small shove away from a tight, white jacket and a padded room at worst.

I love this online world I'm a part of--outside of my family it's been one of the most consistent things I've had in my life the past 10 years--but at the same time I've often felt like my 6th grade self again... not quite cool enough. Except often it's worse than that. I don't feel good enough. Part of it is simply finding the time to pursue some of my goals and interests (I'm working on that--it's been really hard trying to find outside help), but the other part are feelings of sheer inadequacy. Whether its mothering, being a wife, blogging, being an artist, a decorator, a photographer, being a friend, making friends I have felt inadequate and have struggled in all these areas of my life as of late. Now unlike my 6th grade experience I haven't faced any mean girls per se (at least not overtly), but I haven't found my Amber D. either. But also unlike my 6th grade self I've allowed myself to be sucked into the lie that I am not enough. Right now every little thing from how I parent to how my house is decorated for Halloween feels sub par, and for some reason this is getting tangled up in my actual self worth. Which only makes me want to get down on myself more because I know better. These things are not who I am and do not equate to my worth. And yet...the feelings say otherwise. Not a fun cycle to be caught it.

Forgive me for switching gears yet again, but I promise this will all come together...there are a couple articles I've read in the past few weeks that have really stayed with me through all this crazy self-doubt and feelings of worthlessness lately. They go in completely different directions, but they correlate in an unexpected way.

The first article is from Elna Baker a name some of you may recognize as a contributor to This American Life. In the article Elna talks about her history with weight loss and general negative body issues. It was really her last two lines that hit me hard and you don't need to read the entire article to get the context, although of course it will help. After talking about extreme weight loss and surgery to remove excess skin, and still not feeling happy with her body and feeling like a hypocrite at the same time she closes with this: "The truth is I think everyone should genuinely accept themselves--everyone, except for me. This is the disease I am still trying to overcome."

Ugh. On one level or another we all get this. For me, I sit here as someone who writes about our value as human beings regardless of our abilities or disabilities, regardless of our successes or failures... I feel like I could look every single person I meet in the eye and tell them they are priceless beyond measure simply for existing, and yet I struggle to believe this about myself. 

The other article comes from an interview with Stephen Colbert. This was a surprisingly good and insightful read, but it's long and you have to read to the end. Honestly, it's well worth your time--read it here. In it he says that one of his improv teachers told him the most important lesson he could pass onto them was this: 'You have to learn to love the bomb.' He goes on to say, "It too me a long time to really understand what that meant.  It wasn't 'Don't worry, you'll get it next time. It wasn't, laugh it off.' No, it means what it says. You gotta learn to love when you're failing... the embracing of that, the discomfort of failing in front of an audience, leads you to penetrate through the fear that blinds you.  Fear is the mind killer." 

Whoa, right? It gets better. 

He then goes on to talk about losing his dad and two of his brothers when he was 10 years old to a plane crash and yet he is a genuinely happy even joyful person who carries no anger in his heart for the circumstances of his youth. He talks about his mom, "'And by her example I am not bitter. By her example. She was not. Broken, yes. Bitter, no.'" The article goes on to say, "Maybe, he said, she had to be that for him. He has said this before--the even in those days of unremitting grief, she drew in her faith that the only way to not be swallowed by sorrow, to in fact recognize that our sorrow is inseparable from joy, is to always understand our suffering, ourselves, in the light of eternity. What is this in the light of eternity? 'It was a very healthy reciprocal acceptance of suffering,' he said. 'Which does not mean being defeated by suffering.  Acceptance is not defeat. Acceptance is just awareness,' He smiled in anticipation of the callback:  'You gotta learn to love the bomb,' he said."

I just want to make sure you're paying attention because this is the kicker. Colbert goes on to say, "Boy did I have a bomb was I was 10. The was quite an explosion. And I learned to love it. So that's why. Maybe, I don't know. That might be why you don't see me as someone angry and working out my demons onstage. It's that I love the thing that I most wish had not happened." 

I've been trying to figure out for weeks how my 6th grade experience relates to my present life. I think the main lesson is in learning to love the bomb--the embracing of circumstances in your life that  will breed acceptance, which turns into strength and helps you rise above. In 6th grade I learned to love the thing that I most wish had not happened. Being a social outcast was the best thing that ever happened to me at that age. I was freed from being this person who had to fall in with the social norms that dictated what it meant to be popular. For years now I have had this realization that I'm a little too artsy for the mainstream crown and a little too mainstream for the artsy crowd. 6th grade was when this realization was starting to come into focus and had I been accepted back then I'm not sure I would have been the same person I am today. I learned to love the bomb. I didn't realize it, I wasn't trying to, but I did. 

Today, the rejection I sometimes feel if a blog or Instagram post doesn't go over well, if my art isn't fawned over or if a personal connection doesn't meet my expectations has at times filled me with self-doubt and feelings of worthlessness. And the main difference is the source of these feelings. In 6th grade it was easy to reject the idea that I was a nobody or that I was unworthy when someone else was telling me so. But self-doubt and feelings of worthlessness that stem from within? That is some seriously poisonous, mind-altering toxic crap. There is no fear more crippling, no restraint stronger than the doubts and false beliefs of worthlessness manufactured inside our own brains.

Exhale. I think I'm getting somewhere.

After expressing all this self-doubt, inadequacy, anger and shame the other night to my husband which culminated in cussing, crying, walking outside in the dark barefoot and more crying I finally came in and asked for a blessing. I was reminded of my worth. I was reminded that it is infinite and eternal and nothing I can do or be will alter that. I was reminded to be still and know that I am God, which is so very different from my usual approach of trying to make, do and know that I am awesome. Trust me, my method doesn't produce lasting results.

In closing, learn to love the bomb...yes, Yes! embrace when you're failing in order to break through the fear that is, as Stephen said, the mind killer. I didn't want to change who I was in 6th grade and I don't want to change who I am now. If I lose a few followers or readers being myself, I trust that in time, I will find my people and my people will find me. The bomb in our lives is our circumstances, not us. So yes, learn to love the bomb.

But when you find yourself spiraling down in shame, fear, inadequacy, guilt, anger, and self-loathing, you suck that poison right out, because that shiz is lethal

Friday, October 02, 2015

Special Needs Spotlight || Will

*Ugh...guys pardon my formatting today, I don't know whats going on here, but for some reason it's just a little crazy. Hopefully it doesn't interfere with the amazing message being shared. 

Hello, my name is Leslie and I would like to introduce you Will, sports fan extraordinaire! He is a friendly, smart and curious 12 year old who has a rare chromosomal abnormality. It is pretty rare and we don't have much information about it so we navigate on a path of the unknown most of the time. A few things we do know, he has global developmental delays and limitations on what he can do. Most of the time he does not see those limitations, which can be good, he wants to do everything all the other kids are doing. However, that can also be hard, some things are just not possible for him, making him sad and frustrated. He loves to learn new things but can get fixated on topics easily, he can be focused one minute but impulsive the next, he has an amazing memory and can recall almost everything but can't read or write. It is as if he has the mind of a 5 year old in some ways and advanced beyond his years in others. Other than having a kid who requires more attention, we are a pretty typical family. My husband and I moved with Will and our two older boys to South Burlington, VT from New Jersey 11 years ago. We have since added a little girl to the mix and it is amazing how an 8 year old girl really does mix things up in a house full of boys, especially one with special needs. Living in Vermont is great for us all but it really is great for Will, from the services, to the schools to the community we feel really lucky to be in such an awesome place.


Miggy: Hi Leslie! Thank so much for being here and sharing your family, especially your son Will, with us today. Can you take me back to the day you knew Will was going to have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Leslie: We found out that Will had a chromosomal abnormality via amniocentesis. We were given little information on the diagnosis and had two kids under the age of 4 at home so naturally it was a very scary and emotional time. It was a wait and see kind of a thing and in many ways it continues to be a wait and see with Will, we still deal with a lot of unknowns but as he has grown and settled into himself more, we are not nervous and scared. While it can still be emotional, we are more comfortable with who he is as a kid and who we are as parents and that helps a lot!

Miggy: It's always really great for me to interview moms who have many years of experience under their belt as a special needs mom--certainly the longer we're on this path the more we grow and discover. I know your son's condition is 'undiagnosed' but can you explain how your Will’s needs affect your and his day-to-day life? Has this changed over time? If so, what are the major differences?

Leslie: Will's needs pretty much vary daily. Some days he is cooperative, delightful and independent and somedays his moods, frustrations & impulsiveness can be unpredictable. He has a hard time expressing himself so he acts out by yelling, acting inappropriately and sometimes he can be physical. It can be exhausting. It has changed over time, I think we get better at being his parents every day. We have developed strategies to cope and creative ways to deal with what comes up. We try not to take him places where we know he will have a hard time. We try to give him opportunities where he will have the most success. We have learned to read his signs i.e. if he starts yelling at you, quick get him some food! If he's had too much structure, quick get him his IPad! Somedays it can be just a matter of us all going to bed early and starting over the next day.

Miggy: Miggy: What are the biggest worries you face for Will?  And likewise, what are your hopes and dreams for Will?

Leslie: I am sure this is high on the list of every parent who has a special needs child: we know it is likely that he will never be able to live on his own and really care for himself so I worry about what will happen to him if something happens to my husband and I. I take comfort in the fact that he has three great siblings and a supportive extended family, but it is still a big concern. When he was younger we worried about him being accepted and finding his place within the community, but that has subsided a lot as we have seen how supportive and kind most people are.
As for my hopes and dreams for Will, I would love for him to learn how to read. I feel it would give him access to so much more in life. He loves listening to books and looking up information on his favorite sports team and players and I would love for him to be able to read about them on his own. I hope he continues to be happy, lives his life to his fullest potential and gets enjoyment in the things he does, whatever that may look like for him. I hope he is always surrounded by caring and kind people who accept and love him for who he is. I know he will always have a love for sports!!

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 situation?

Leslie: We laugh every day with Will but the thing that always makes us smile and reminds us just how special a kid he is, is when we are out and around town with him. We are amazed at just how many people know him and go out of their way to say hello and give him a high five. Often, they are people we don't even know. It makes us wonder if he has a secret life.

Miggy: There are differences you can't see and there are differences you can see and Will is sorta somewhere in the middle. As you explained most people don't realize he's different until they start to talk and interact with him. So how can people best approach or respond to your Will? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Leslie: You are right, Will is somewhere in the middle. There are certain things Will just can't handle, people expect things from him that he can't always give and sometimes the concerns we express go unheard and that inevitably makes it hard for everyone involved. Also, older kids and adults seek him out and engage him all the time. And while his peers are kind and patient with him, I wish they would include him socially. He thinks of everyone as his friend but really he doesn't have any true peer friends. That is very hard for me, he doesn't seem to notice so I try to take his lead but that is a hard thing for a mother to see.

Miggy: Of course the biggest thing most people will come to find out about Will is that he is a HUGE sports fanatic. But he also lacks the ability to ever play on an organized team like most kids his age. Can you tell us a little about his love of sports and the difficulties your family, especially Will, has faced as he hasn't been able to fulfill this dream in the way he wants? And please, tell us about Big Wille Style, the t-shirt line you created for Will and other kids like him.  

Leslie: YES if you think of Will, you think of sports. He really loves all things sports and when he talks about his favorite player or team (they change often!!) he glows. He sounds confident and interested and just plain happy. We are so lucky to have the University of Vermont in our backyard and Will gets up close and personal with many of the UVM athletes. He is know as "THE LEGEND" with some of the players. Sports are a great outlet for typical kids, it is a way to release energy, build a camaraderie and can make them feel like they belong. Will loves sports and asks everyday if he can join whatever team is in season. Unfortunately, as he has gotten older, it has become less of a possibility for him. That is extremely hard on him and on us. We have had to get very creative to help him cope with that. We have figured out that if we get him a team uniform, or equipment then he feels like part of the team. He talks players into giving him their old sweaty jerseys and they are happy to hand over whatever he wants. Just this past weekend he came home with 3 hockey sticks from a scrimmage that he went to. 
That is how our t-shirt brand BIG WILLY STYLE was born, to represent the ULTIMATE FAN. Big Willy Style has helped Will feel like he is part of something, the shirts and the story behind them represent Will and his happy go lucky attitude about sports. He loves seeing people wear his shirts with his "face" logo on them. Also it is a way we can give back to our great community as we donate a percentage of the t-shirt sales to local charities that help special needs kids. You can read more about our story and the story behind over at BIG WILLY STYLE.

Miggy: In 12 years I know you've probably learned a lot of lessons, but what is the biggest lesson you’ve learned since becoming Will's mom?

Leslie: I have three lessons: 1. Sometimes you have to create your own opportunities. My husband has been coaching our older boys in lacrosse and basketball for years and I know he really wanted to be able to coach Will but we realized that was not possible in our community so we took matters into our own hands. We started a basketball program for kids ages 4-21 who have physical, emotional and intellectual challenges. At S.T.A.R. (Special Talents Adaptive Recreation) Basketball, our special need athletes are paired up with school aged buddies in a non competitive environment where they work on various basketball skills as well as play scrimmages. We are gearing up for our 5th season this winter and it is something we look forward to all year!

2. Just let things roll, which is sometimes easier said than done. My husband is much better at this than I am, so I am very thankful we are in this together! One thing I have realized over time is that what I am concerned about or self conscious about, usually goes unnoticed by others

3.  I try not to project too much about the future. My mother, who unfortunately never got the chance to meet my kids, used to say, "You can ‘what if’ from today until tomorrow, but you may as well wait until something actually happens before you try and deal with it.”


Thank you so much Leslie--what an incredible boy you have! And what an incredible mom you are! Your first lesson--sometimes you have to create your own opportunities--is profound, but also proof of what a lucky boy Will is. That idea is great advice for so many people in general, but thinking of it in terms of parenting our special kids we are often going to be faced with dilemma's that are unique to our family. We can't wait around for someone else to notice our needs--we need to be the change we want to see. With the creations of Big Willy Style, clearly you have stood by that idea. I also appreciate your simple and pragmatic approach to life and parenting, as you said somedays it can just be a matter of us going to bed early and starting all over tomorrow. Thanks again Leslie, you have a beautiful family.

Thanks again wonderful readers and supporters of this lil blog. You make all the difference and I appreciate it so much. As always if you or someone you know would like to participate in the special needs spotlight please email me (or have your friend/family member email me) directly at thislittlemiggy at gmail dot com.

Have a great weekend!

Tuesday, September 29, 2015

Eastern vs. Western (My Experience with Acupuncture)

Right now I'm sitting in a cafe across the street from where I just finished my acupuncture appointment. I don't remember exactly, but I think this is my 5th or 6th appointment and so far I give acupuncture two thumbs up.

It's been almost a year since I herniated a disk in my back (last November) and recovery has been long, difficult and at times very discouraging. It took me about a month to resume a somewhat normal life. Within 6 weeks I would say I was 90% better. I assumed the last 10% would come with time and treatment. I went to the chiropractor which helped, and started doing yoga as a regular practice which also helped. I could no longer do the other forms of exercise which I had always enjoyed, so yoga has been a good replacement. That being said I was still feeling pain pretty consistently (almost daily) and after about 6 months I talked to my doctor again and she assured me that it can sometimes take up to a year to make a full recovery. OK then. I kept trudging through, doing my best not to carry heavy things and yet strengthen my core at the same time and hoping that eventually the dull ache that had seemed to take up permanent residence in my lower back would one day vacate. Then this past July I had a major relapse. It wasn't quite as bad as the first time, but definitely the worst it had been since.

So discouraging! I thought I was steadily getting better this whole time, I didn't expect to be knocked off my feet so quickly again and seemingly out of nowhere. So this time I finally decided to step up my game--I went to physical therapy and had an appointment to get a spinal injection. The physical therapy was helping a lot but I still wanted to do the injection to hopefully jump start a final push to recovery. Plus I just wanted the pain to go away. And it did!  For about 3 weeks. Oi.

Now I was feeling really discouraged...was this going to be the rest of my life? Before my back injury we were hiking a lot as a family--I would wear Zuzu on my back and my husband would carry Lamp on his--and enjoying other physical activities, but many of those things have been out of the question for us since this back thing started. I have never had a physical issue (outside of pregnancy) alter my life so much! Not to mention living with constant dull ache in my back was taking a toll on me emotionally as well.

Finally, I decided it was time to look into alternative treatment and so I researched acupuncture. I wouldn't say I was a skeptic because I've always been open to eastern/holistic medicine but having so little success with my back pain in almost a year I was definitely cautious. I found a place in Cincinnati with GREAT reviews and I decided to give it a go.

My expectation was that it would take several appointments to feel any pain relief. When I discussed these expectations with my acupuncturist she shook her head. She said that she expected that I would feel relief right away, but because of the nature of my injury it probably wouldn't last too long--maybe a day or two--but just to note about how long it lasted and tell her on my next visit. Again I was skeptical I would feel relief after this appointment, but....she was right. After my 30 minute appointment the constant dull ache I had been feeling in my back for months was gone. She was also right in that it only lasted about a day and a half. But I've been going about twice a week for a few weeks now and this has been the most consistent pain relief I've had since this back stuff started. HOORAY! To be clear I'm still doing my physical therapy at home and being cautious with heavy lifting and such, but really I can't tell you how great this is to have some relief and to feel like I might finally be on the road to recovery. That being she has also been treating me for my insomnia--which so far hasn't had the same miraculous results. But that's OK. Today's session was the first time I actually nodded off and felt relaxed so maybe we're getting there. I'm going to keep going for a while (1-2 times a week) to keep up with my back treatment and to continue to work on my anxiety/sleep issues.

My first visit I was surprised by a couple of things. Of course the immediate back relief was one of them, but the main surprise can be summed up by saying, acupuncture is no joke! In addition to the pain relief there was a distinct feeling of my internal energies being shifted around. I can't describe it any better than that, or say what the shift was but I was definitely feeling something. Also one time I moved my hand during an appointment and felt this zap up my arm from one of the needles! It was a strange sensation and it made me realize things are happening in there! I don't know what's happening, but something is definitely happening. I haven't had anything like that since, and the needles don't usually hurt after the initial insertion (although some can hurt a little longer than others) but now I try to lay still and just relax. Anyway, I was surprised to just feel so different physically after my treatment.

Like I said above I'm a fan of both eastern and western medicine. I have no problem mixing the two and it seems like I have the same about of trust/skepticism for both ideologies--ha! The thing I'm probably most skeptical of are people who are too extreme in one viewpoint or another. I have met people who "don't do doctors" and people who think that anything holistic is a bunch of hogwash and for me both of those mentalities rub me the wrong way. (I just realized that this also explains the core of my political beliefs as well--haha...but I'm being totally serious.) I will say that for most people there is still more skepticism with holistic/alternative medicine. It seems like when discussing alternative treatments the question that most gets asked is "Did it work?" Whether you're talking about essential oils, chiropractic treatment or acupuncture people want to know "Did it work?" Of course the answer is sometimes yes and sometimes no. But the funny thing is this is the same answer when it comes to traditional medicine! When I get a headache and take a Tylenol or Advil sometimes it works and sometimes it doesn't--that doesn't mean I'll never try it again or that it's totally phony. Same thing with more serious treatments like chemotherapy--sometimes it works and sometimes it doesn't. There are so many individual factors at play in any given medical treatment, it only makes sense that different people will have different outcomes regardless of the type of treatment.

So that's it. For me and my back pain acupuncture is working really well. My only regret is that I didn't try acupuncture sooner.

Has anyone else tried acupuncture? Did it work for you or not? What about the whole eastern vs. western medicine approach? Are you firmly in one camp or the other (I hope we can still be friends--wink), or like me do you straddle both worlds of medicine comfortably? Have you ever tried an alternative medical approach with surprisingly good results?  

Wednesday, September 23, 2015

Thoughts on Walking

face painting last weekend courtesy of the better parent, aka dad. 

Have you ever had that experience where your teacher sends home a note that says something like, "Sally is doing really well in her independent study of advanced chemical compounds! Keep up the great work at home!" And you're like, come again?

That's how I felt when I got an email the other day from Lamp's therapist saying, "Wow!  She's made so much progress! I tried to get a video of her walking but it wouldn't load, I'll send it later!"

Walking?  Huh?

Hey Lamp, come here? So Sue tells me you did some walking the other day....were you holding on to anything?


Were you wearing your brace?



I was just doing some walking on my own mom. (exasperated)

Uh, OK.

(Silently in my head ??????? and !!!!!!!)

Then girlfriend goes ahead and shows me a couple steps. To be clear these are really, really small steps. Whatever you're imagining cut it in half then take it down a notch. But it's not about distance it's about balance, strength, coordination, determination and practicepracticepractice. And in some ways it's not even about those things.

Sidenote: It just occurred to me that she is going to be so good at teenager-ing. I'm going to have absolutely NO idea what is going on in her life while she's right under my nose. Amazing. I can't wait.

From questions I have gotten the past year and a half, I realize that there is some confusion over whether or not Lamp can walk mainly due to various Instagram videos I've posted. Let's recap: Here's the video of the first time she stood up without holding on to anything. A while later I posted this video of her taking a couple tiny steps using her crutch and most recently I posted a video of her standing up from a sitting position completely independently, meaning she's not grabbing anything to help her get up. And now today a short video of the very small but very significant steps she is taking. To sum up: She is not actively walking--not in the way that you and I walk which is to get somewhere. Not even across the room. But she is taking steps--mostly in therapy. To get around she scoots or uses her newest power chair that she can get in and out of all by herself. This power chair is her primary source of mobility around the house while she still takes her first and more conventional power chair to school.

But taking steps without a brace, or a crutch or anything?
This is a very big deal. She's getting there.

But an even bigger deal? She doesn't care that much. And neither do I.

I realize that sounds confusing. How is it a really big deal while also being not a really big deal? I'm so glad you asked, let me explain.

When Lamp was born the whole walking issue was, as noted above, a really big deal. And I was sure she'd be walking on a typical timeline. Part of this was denial, part of this was because I had talked to other mothers of kids who had limb differences on all 4 limbs and those kids still walked by 12-16 months. That coupled with the fact that many doctors had told us that they believed she would walk eventually. But Lamp's differences were more pronounced than the other kids...I just didn't realize it. Or didn't want to (denial).

When you think about it walking/not walking is a rather big medical cliche... we've seen those soap opera scenes where the worried family looks up to the tall, handsome doctor who announces, I'm sorry but he's never going to walk again, as everyone bursts into tears. Of course being a soap opera he does walk again... down the aisle on the day of his wedding as he's getting married to the physical therapist who not only taught him how to walk again, but also how to love again. But I digress... The thing is this question, Will she walk?, Can he walk?, Will she ever walk again? is a rather big marker of I don't even know what, but something, in our human experience. We put a lot of emphasis on this ability to walk. As long as they can walk everything is going to be A-OK!

So yeah, I wanted my kid to walk. And that's not wrong. Not exactly. That first year I was really focused on walking. It felt too important and too big to be relaxed about it. And so when that typical walking time table came and went, I was sad. And I mourned. And I wondered when?

And then one day--I don't remember when--I let go. I let go of the timetable, I let go of the expectation and I let go of the importance of walking. This was really good for me and it felt good too. In time I would learn that it was even better for Lamp. One of the reasons I love her doctor in Dallas so much is that he has such a holistic, healthy approach to limb differences. He observes her whole body and how she uses it all together to do the things she needs to do and wants to do. While surgery could improve her walking, it could also impede her in other ways and therefore we have not yet considered surgery a viable option. I can't tell you how wonderful it is to have a doctor who doesn't want anything--prosthetics, surgery, a fixation on walking--to get in the way of her being a kid. A happy, typical kid. That's the goal.

Isn't it funny how success can look so different depending on the lens you're looking through? From the outside looking in getting Lamp to walk could seem like a huge success and if we had pushed hard enough--surgery, more therapy, more equipment--perhaps she would be there already. But that big success would have come at a bigger cost. A cost that she would she would potentially pay the rest of her life.

If you would have told me when Lamp was born that it would be 5 years before she takes her first steps I would have been crushed. But now, now I see what success really looks like. It looks like a girl who is happy, a girl who loves herself just the way she is, and a girl so unfamiliar with the idea that walking is the most important thing ever that she didn't even bother to tell her parents she took some steps at school.

A whole, happy person is much more important than any individual thing we can do, be or have everytime. That's what I learned today.

Writing this post was really eye-opening for me personally (one of the many benefits of writing). Has anyone else had to let go of something--even something really important--to be happier and healthier WHOLE person? 

Friday, September 18, 2015

Special Needs Spotlight || John Paul

Hi, I’m Jill, mom of 5 boys (ages 10, 8, 6, 5, and 2) and wife of Patrick, who teaches Latin and Literature at a classics-based private school in northern Virginia. Our fifth son is John Paul, who has a type of TAR syndrome, which stands for Thrombocytopenia (low platelets) -Absent-Radius.  In addition to his radius bone, J.P. is also missing joints in his knees, his humerus bones, and some wrist bones. We like to build campfires, watch the Muppet Show, and eat pancakes (sometimes all at the same time). I blog about #theamazingjp and other things much more trivial on my blog


Miggy: Can you take me back to the day you knew your son John Paul, would be born with limb differences? Did you find out at an ultrasound or did you not know until after he was born? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Jill: Like you with Lamp, I found out about John Paul’s short arms at my 20-week ultrasound. It was done in our little county hospital by a technician who was on her first day at the job and had no idea what she was seeing.  I don’t which one of us was more terrified!  Another tech and radiologist were called in to confirm her suspicions that he had no arms, and then I was sent down to UVA hospital in Charlottesville to have further, more comprehensive ultrasound and an amniocentesis.   Nobody there had ever seen this firsthand before. The UVA high-risk OB said she had been practicing for 30 years and had never seen a baby like our baby.

It goes without saying that we were pretty scared of the Unknown. The results of the genetics testing was that J.P. has a deletion on his #1 chromosome, like someone came along and just erased a whole chunk of it. What they found didn’t really fit neatly into any ‘box’, but they suspected that he would have similar symptoms to TAR syndrome.

We turned to our families for support and prayer. We were both raised Catholic and we try to see God’s plan in everything, and we made feeble attempts to make sense of it. Our families were completely amazing and we also received a lot of graces to endure the next few months.  I came to understand that more than anything, our baby would need the love that only WE could give him as his mommy and daddy.  And that brought a lot of peace.

We also found help in an online TAR families support group and in reading books and websites (like this one!), written by people in the special needs community - which was much, much bigger and broader than I imagined!

Looking back, I have to say that there was hardly ANY day in our journey with John Paul that was worse that that day that we found out that our baby would be ‘disabled,’ ‘deformed,’ & ‘different.’

Miggy: Can you educate us a little on John Paul's specific TAR and limb difference diagnosis and how his needs affect your day-to-day life?  

Jill: We were told that TAR syndrome is diagnosed in about 1 in 100,000 people, but the limb differences can vary a lot! Some kids with TAR have almost normal arm length and full-functioning knees. John Paul, however, is missing most of his arms and the joints in his knees. His little hands come right off of his shoulders, and x-rays have shown some kind of modified ulna and wrist connecting them to his shoulder blades.  He’s still small enough that x-rays don’t show all of the developing bones, though, so it’s possible that there’s more there that we can’t see.

When J.P. was very small, we were so focused on his blood disorder that we didn’t really think about his limb differences apart from their appearance.  He was just swaddled up like any other baby, and we carried him everywhere. We didn't know how much he would use his hands or what he would be able to do for himself.  But as he got older and grew, he started surprising us with what he could do: scratch his ear with his toes, feed himself a cracker, make his way from one room to another. Now he gets almost everywhere he wants to go by rolling, or hopping around on his bum. What is lacking in one area is compensated somewhere else. He has an AMAZING core. Any pilates instructor would be envious of his abs. You should see his Flight position.

While he is still small enough to carry around and ride in a stroller, I don’t think day-to-day life is too radically different than having a baby...but then I realize that I’m carrying a 2 year old up and down the stairs, which isn’t what my friends with 2-year olds are doing. He has been using a ‘lender’ power chair with a little joystick rigged up where he can reach it, and even though he is still learning how to steer, he loves having that mobility.  Once he starts using the chair continuously, life will be much different. I’m trying to brace myself for those changes.

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

Jill: My biggest worry is social acceptance once he gets older and is more exposed to the world. I would hope and be so happy for him to have even just one friend that loves and accepts him for who he is. Social cliques and bullying are very real even for the completely normal-looking kids, and have devastating and long-lasting consequences, so of course this is the foremost worry in my mind. I find comfort in the fact that he will always have a sanctuary of friends in his siblings and extended family.

I also worry about his development. He has pretty significant speech delays and of course he is behind his peers in most physical milestones. These aren’t as apparent to me until he is around one of his peers, and then the differences are really discouraging. I know it’s silly to compare him to other 2 1/2 year olds, but it’s hard not to!

Like every mom, I want my children to be happy, to feel safe and secure in who they are and to strive to be and do their best, and to love and be loved. It would also be pretty great if he could learn to play the guitar with his toes. We’re working on it.

Miggy: I know all too well the difficulties that come with having a child with visible differences. How would you like people to approach or respond to John Paul? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Jill: For the most part, people have been really kind to us when we’re out in public. J.P. is a pretty happy, smiley guy, so he usually wins people over before they even have a chance to say something rude. But generally I think people just don’t know WHAT to say or ask, so they just give us a look. I don’t think John Paul is old enough to really notice the difference, yet, and we are 99% of the time around people who know him, love and accept him for who he is. He hasn’t started school yet, but I know it’s right around the corner so it is something I think about more and more.

I think I would just like people to treat him like a person, with kindness and understanding, even though he doesn’t look like them. Sometimes I feel like people see a disability and just focus on that. I don’t necessarily want sympathy from people or for them to dwell on what he is lacking, because I don’t really see John Paul as having something “wrong” with him anymore. We’ve moved beyond that. We’ve accepted it and we’re trying to do the best with what we’ve got. John Paul is so, so much more than what meets the eye, just like each and every one of us! The best and most important things are those which are invisible to the eye.

Miggy:I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son?

Jill: More than anything else, the relationships J.P. has with his brothers is the most uplifting and joyful things I experience each and every day. They all accepted him and loved him dearly from the first moment they saw him, and would do anything for him. They each have a unique relationship with him that reflects their individual personalities.  My oldest son, who is a natural leader, likes to make sure he is comfortable and will often change him or feed him without my asking him to. One brother is super affectionate and always has hugs and cuddles for him. Another brother loves to play with Legos and is always building John Paul little cars and trucks to play with. His brother closest in age to him is his best friend, and always shares his snacks or juice box with him. Whatever my expectations and apprehensions were for how our children would adapt or accept John Paul into our family have been absolutely exceeded. It is such a joy to see!

Miggy: What is the biggest lesson you’ve learned since becoming John Paul's mom?

Jill: There are a lot more people with special needs than thought. I grew up in pretty privileged, comfortable surroundings, and seeing someone with special needs in the community was a rarity.  In our school, where there was no special needs program, they were almost immediately put to the side, socially ostracized or at least ignored. Sometimes even mocked. Maybe I remember it more harshly than it was, and I’m sure there were exceptions, but we generally weren’t exposed to ‘that world.’

I look back and really regret this. I suppose that the intention of eradicating the world from disabilities is a good and noble one, but it is also futile and has some negative consequences. If there is one thing that John Paul has show me firsthand, even though I already believed it, is that all people have value and have something to contribute to the world. Even the people who can’t eat or talk or walk or breathe by themselves. We need all the people - with all of their disabilities and syndromes and special needs! Our family needed John Paul to be a part of it so much more than he needed us.  He has saved us from ourselves - from only thinking about our own wants and complaints. My husband often says that John Paul was sent to us so that we could learn not to complain.

Life is definitely not rosy all the time. There are lots of difficult days - days that I hide in my closet and polish off a whole bag of peanut butter M&Ms and nights were I lie awake and worry and cry. But even in the midst of all of the pain, I am grateful for it. It is a crazy journey, but we will all be the better for it at the journey’s end.


Jill that was amazing. You said so many things that really struck a chord with me, like "the best and most important things are those which are invisible to the eye." Yep. Like you I really hope people learn to see past the disability in others and realize that there is so much more to them. And like you I think many of us weren't exposed to "that world" and what a shame. To ever presume that there is a portion of the human race that we should set aside, that we can't learn from or that we are superior to is humanity at it's worst. Like you said, "We need all the people!"  We really do. Thanks so much for sharing your sweet family, and especially your amazing John Paul with us today. 

As always if you or someone you know would like to participate in the special needs spotlight please email me or have them email me at thislittlemiggy at gmail dot com. 

Wednesday, September 16, 2015

Family Pictures with Mo

My friend Mo came a few weeks ago and took some pictures of our family. I love, love, love taking family photos in our home--the one above is my absolute favorite and we'll be getting it framed soon! We've done family photos on location before--and they were beautiful--but there's something about capturing your home as part of the family as well. Additionally, Mo used black and white film (as opposed to just editing them black and white) and I can't tell you how much I LOVE these photos. The look is so classically elegant and surprisingly different! I even edited a couple of our family photos to be b+w as well. Ha--I know I just said it's not the same as actually having b+w film, but I couldn't help it! You might also recognize these photos as the ones I used for the Mother Mag feature. I'm so lucky to know so many talented photographers... we've had a lot of great family photos over the years.  See here, here, here and here.

If you're in the Chicago or surrounding areas check out Momoko Photography.

Most of these are for a project she's doing on mothers and daughters, so if you're wondering why B isn't in more of the photos....well that's why. Also, we did all the family photos outside which is my only regret! I really wish we had pulled B in for some of the indoor photos. They're still great, but again...there was just something about those indoor photos. I know family photos can be an investment, but to me so worth it. Especially when they can capture a mood and feel like these photos do. Do you get family photos regularly? If so how often? I know it can be hard doing styling, managing kids and even your own expectations--do you think it's worth it? Also have you ever had a family photo shoot you totally regretted? If so what did you regret and what did you do about it? 

Friday, September 11, 2015

Special Needs Spotlight || Hamilton

Hi, I'm Destiny.  My husband Bryson, and our two sons Hamilton (2) and Clay (3 months) live in the Washington D.C. area. Hamilton has a rare neurological condition called Moebius Syndrome. He can't make facial expressions or move his eyes laterally, has low muscle tone and difficulty moving his tongue to eat or speak. Hammy, my nickname for him, loves playing outside, dumping water, and running around. We are excited to share more about Moebius Syndrome with you all.


Miggy: Hi Destiny! Thanks so much for participating in today’s special needs spotlight. Lets start at the beginning, can you take me back to the day you knew you found out your son had Moebius Syndrome? Was this during an ultrasound, shortly after birth or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Destiny: We found out Hamilton had Moebius Syndrome when he was about two weeks old. When Hamilton was born the attending pediatrician noticed his small chin and worried he wouldn't be able to breathe or eat correctly. He was breathing fine, but soon after we tried to give him a bottle and he couldn't suck. The doctors noticed other physical markers of a genetic syndrome (epicanthil folds, hypotonia, and several other characteristics) and so Hamilton was sent to the NICU for a feeding tube and further evaluation. The NICU doctor sent pictures of Hamilton to a geneticist and the first guesses at what he could have were very severe. It is very rare that a baby doesn't know how to eat. Luckily, every test that was run came back normal. 

Hamilton was born at a small hospital and since he wasn't eating full feedings we thought he was going to need a permanent G-tube to eat. The hospital Hamilton was born at didn't have pediatric surgeons on staff so we decided to transfer him to a larger hospital in the area for surgery when he was two weeks old. At this hospital a neurologist came to see him and diagnosed him with Moebius Syndrome. Moebius was sort of a relief, honestly. We had spent the first two weeks preparing for severe intellectual and physical disabilities, or the possibility of not having our sweet little boy live a full life. I have to note that there are many children with Moebius Syndrome who are far more affected, and do have complications with eating, breathing, and have more severe physical limitations. We were relieved because we knew Moebius isn't degenerative and we knew what we would be dealing with.

Miggy: Will you please educate us on Moebius Syndrome and explain how this affects Hamilton and your day-to-day life?
Destiny: Moebius syndrome is characterized primarily by the lack of the 6th and 7th cranial nerves. The 6th cranial nerve powers lateral eye movement and the 7th powers all facial expressions. Hamilton can't move his eyes side to side, blink, smile, frown, or make any other facial expressions.

Day to day it doesn't affect us as much as it did the first few months. He used a feeding tube in his nose for a few months until he got the hang of a special bottle to eat. Now, though he might be the messiest eater I've met, he eats everything we do. He can't suck and he uses his fingers to push food around in his mouth if his tongue can't do it (something we work on), but other than that eating is mostly normal. He goes to occupational therapy and still has physical delays (he did not walk until he was almost two), but again these feel very minor and we feel blessed to have a funny, loving, active little boy.

Sometimes his speech is hard to understand, but he's two, so that's typical. We work with a speech therapist and are working on p, b, and m sounds. When he was first diagnosed I worried about the lack of expressions, but my husband and I have no problems understanding his emotions. And, his laugh, is pretty much the cutest thing I've ever heard in my life.  

Miggy: What are the biggest worries you face for Hamilton? What are your hopes and dreams for Hamilton?

Destiny: I worry about Hamilton socially. I worry about bullying. So much so that I just can't think about it, I push it to the recesses of my mind and try to ignore it. I worry that people will treat him differently, like he doesn't know what is going on because he looks different, but he will fully understand if he's being made fun of. I expect Hamilton to live a relatively normal life. He's going to have challenges, but I hope he can find good friends. I also hope that he can help others. He's a really sweet little boy, and I hope he never loses that kindness. I also hope Hamilton is secure in who he is. We've met amazing adults with Moebius who have wonderful fulfilling lives. I hope Hamilton can do the same.  

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?  

Destiny: When Hamilton was about 6 months old we went to a street fair. A little boy ran up to us and said "I can make any baby smile!" He was pulling out all his best tricks, including making faces about six inches from Hamilton's face. He didn't give up for a while and we couldn't bring ourselves to tell him. When he walked away my husband and I burst out laughing. This sort of thing also happened in checkout lines multiple times. I still say smile when we take pictures. A few months ago we had pictures taken and the photographer said "he looks sort of serious." I had forgotten to tell her he couldn't smile.

Miggy: How can people best approach or respond to Hamilton? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Destiny: People have been so sweet to Hammy, particularly when they know he can't smile.  Young kids in particular are so nice to play with him and treat him like one of the gang. It isn't that noticeable yet, but I think it will be more noticeable as he grows up. I really like it when he's treated as a typical two year old.

I'm not that sensitive to people saying "smile." It's very rare not to be able to smile. I've heard from other parents of kids with Moebius who are more sensitive to these things, so I think it's a very personal issue.  

Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your Hamilton?

Destiny: Hamilton has a younger brother Clay. Clay is only three months old, so hasn't given a lot of support to Hamilton. Hamilton LOVES Clay. Almost every morning, first thing in the morning, Hamilton runs into Clay's room to wake him up. He also constantly wants to give him kisses and rest his hand on Clay's head. Clay also seems to really like Hamilton. I'm so excited for them to grow up together and be friends. Siblings were and are a big part of life for me and my husband, so we really want that for our kids.  

Miggy: What is the biggest lesson you’ve learned since becoming Hamilton's mom?
Destiny: I had never spent anytime around special needs kids until Hamilton. I joke that my heart grew three sizes the day he was born. Now when I see a special needs child I want to go give them, and their parents, a big hug. I learned not to be intimidated around special needs families, now I'm part of the club. I've also learned that there are so many kids who have struggles in some way. So many friends have shared their child's medical histories, diagnoses, or needs and I never would have had any idea until they told me. Everyone deals with hard things, it's just not always visible on the outside.


Destiny thank you so much for sharing your sweet family and especially your darling Hammy (love that!) with us today and educating us on moebius syndrome. One reason I love doing these spotlights is that I am always reminded--once again!--how little I know & to always reserve judgement. I would have never known that there are people who don't have the ability to smile or make facial expressions in general...and now I know. Also I laughed out loud at your funny story--poor kid never stood a chance! Thanks again for sharing your story and educating us about moebius syndrome.

Thanks as always to you wonderful readers for your love and support. YOU are what makes this series so special. Please, if you know someone who would make a great spotlight have them email me at thislittlemiggy at gmail dot com.

Have a fantastic weekend!